Grief and Loss Across the Lifespan

Judith L. M. McCoyd, PhD, LCSW, QCSW, is an Associate Professor at Rutgers University—School of Social Work, teaching in the Advanced Clinical curriculum and working with both the PhD in Social Work and DSW doctoral programs. She worked in perinatal, emergency room, and oncology settings during her active practice life before academia and continues to maintain a small private practice with perinatal and end-of-life care as specialties. She is coauthor of Grief and Loss Across the Lifespan: A Biopsychosocial Perspective (2009) and coeditor (with Toba S. Kerson) of Social Work in Health Settings: Practice in Context (3rd ed.—2010). She presents at national and international conferences such as Council on Social Work Education, National Association of Perinatal Social Work, and the Interdisciplinary Conference of Social Sciences, and publishes in journals about perinatal decision making, technology and health care, societal aspects of bereavement, and social work education. Her research agenda involves exploration of the ways perinatal technologies impact the experience of child-bearing and bereavement when perinatal loss occurs.

Carolyn Ambler Walter, PhD, LCSW, is a Professor Emerita at the Center for Social Work Education at Widener University, Chester, PA. In addition to teaching part time at Widener, she has served as a mentor and instructor in the DSW program at University of Pennsylvania, School of Social Policy and Practice and maintains a private clinical social work practice. Dr. Walter is the coauthor of Grief and Loss Across the Lifespan: A Biopsychosocial Perspective (2009) and the author of The Loss of a Life Partner: Narratives of the Bereaved (2003). She is the coauthor of Breast Cancer in the Life Course: Women’s Experiences and the author of The Timing of Motherhood. Dr. Walter has published many articles in professional journals on such topics as women’s issues, grief, and social work education. Dr. Walter has also given professional presentations at state and regional hospice conferences throughout the United States, at Association for Death Education and Counseling, National Association of Social Workers, and Council on Social Work Education national conferences.

Grief and Loss Across the Lifespan

A Biopsychosocial Perspective

Second Edition

Judith L. M. McCoyd, PhD, LCSW, QCSW Carolyn Ambler Walter, PhD, LCSW

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Walter, Carolyn Ambler, author. Grief and loss across the lifespan : a biopsychosocial perspective / Judith L.M. McCoyd, Carolyn Ambler Walter. — Second edition. p. ; cm. Carolyn Ambler Walter’s name appears first in the previous edition. Includes bibliographical references and index. ISBN 978-0-8261-2028-1 — ISBN 978-0-8261-2029-8 (e-book) I. McCoyd, Judith L. M., author. II. Title. [DNLM: 1. Grief. 2. Adaptation, Psychological. 3. Attitude to Death. 4. Counseling—methods. 5. Human Development. 6. Social Support. BF 575.G7] BF575.G7 155.9’37—dc23 2015014933

This text is dedicated to:

Ryan Patrick McCoyd and Ian Walter McCoyd, my sons who have navigated losses resiliently and who fill my life with meaning and joy.

—Judie McCoyd

The family of Carolyn Walter: Bruce Bryen, Carolyn’s husband, who has supported her in all of her efforts to complete this second edition, Kim Remley, Brian Walter and her grandchildren, Matthew, Connor, and Hazel, who have

brought her incredible joy during midlife and now older adulthood. —Carolyn Walter

vii

Contents

Preface xv Acknowledgments xvii

1. Introduction 1 Text Structure 2 Objectives 3 Biopsychosocial Aspects of Grief 3

Biological Effects of Grief 3 Psychological Effects of Grief 6 Social Aspects of Grief 7

Introduction to Grief Theory 8 Classical Grief Theory 8

Task-Based Theories 8 Stage-Based Theories 11

The Transition to Postmodern Grief Theory 16 Dual Process Model 17 Meaning-Making and Grief 19 Continuing Bonds and Grief 20 Disenfranchised Grief 21 Ambiguous and Nonfinite (or Chronic) Grief 22

Issues of Intervention 23 Therapist Activity in Intervening With Grief 23 Mindfulness as an Intervention for Grief 24

A Final Word About Grief Work 25 Discussion Questions 26

2. Perinatal Attachment and Loss 27 Objectives 27 Developmental Aspects of Pregnancy 28

Biological Developmental Context of Pregnancy 28 Psychological Aspects of Pregnancy 30 Social Aspects of Pregnancy 32

Summary of Development in the Prenatal Period 33 Loss as Experienced by a Fetus 34 Loss of a Fetus as Experienced by Significant Others 35

Biological Changes Associated With Intrauterine Fetal Death 35 Psychological Aspects of IUFD 36 Social Aspects of IUFD 39

Other Types of Perinatal Loss 41 Infertility 42 Assisted Reproductive Technologies 42 Medically Complicated Pregnancies and Loss 43

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Share Grief and Loss Across the Lifespan : A Biopsychosocial Perspective

Contentsviii

Prenatal Diagnosis and Termination for Fetal Anomaly (TFA) 43

Delivery of a Premature or Medically Compromised Neonate 44 Intervention 45 Readings 47

Disenfranchised Grief Following Negative Childbirth Experiences 47 Rumyana Kudeva

My Septuplets 51 Elizabeth

Summary 56 Discussion Questions 57

3. Infancy, Toddlerhood, and Preschool 59 Objectives 59 Developmental Stage: Trust Versus Mistrust and Autonomy

Versus Shame 60 Biological Development 60 Psychological Development 61 Social Development 62

Losses Experienced in Infancy and Early Childhood 63 Death of a Caregiver 64 Nondeath Losses 66

Loss of Caregiving 66 Loss of a Child’s Own Health 67

Loss of an Individual at This Age by Parents 68 Death of an Infant, Toddler, or Preschooler 68 Loss of the Idealized Child 68

Typical and Maturational Losses Experienced at This Age 69 Birth and Gradual Loss of Complete Care 69 Birth of a Sibling 70

Readings 70 First Time Dads 70

Geoffrey L. Greif Maternal Depression and Early Infant Development: Risks for

Relational Deprivation and Loss 74 Janet Shapiro

A Case of Perinatal Stroke: Examining Multiple Layers of Loss 78 Jennifer Boiler

Summary 82 Discussion Questions 82

4. Elementary School–Aged Children 83 Objectives 83 Developmental Stage: Initiative Versus Guilt and

Industry Versus Inferiority 83 Biological Development 84 Psychological Development 86 Social Development 87

Loss Experienced by an Individual During the Elementary School Years 88

Contents ix

Impacts and Perceptions of Loss for Elementary School-Aged Children 88

Death Losses 89 Death of a Parent 89 Death of a Sibling 90 Death of a Pet 91

Nondeath Losses 91 Losses Due to Sexual Abuse 91

Typical and Maturational Losses 92 Loss Due to Parental Divorce 92 Loss and the Military 93 Loss of Being a Child 94

Intervention Issues With Elementary School Children 94 Loss of an Individual of Elementary School Age as Experienced by

Others 96 Parents’ Loss of a Child 96 Forgotten Mourners—The Grandparents 99 Losses (Nondeath) Related to Child Protective Services 99

Readings 100 A Small Miracle: Perinatal HIV Transmission 100

Deborah Calvert Not an American Movie 103

Huong Nguyen and Deborah Falk Summary 108 Discussion Questions 109

5. Tweens and Teens 111 Objectives 111 Development: Identity Development Versus Identity Diffusion 112

Biological Development 112 Psychosocial Development 114

Losses Experienced by the Adolescent 116 Death Losses 116

Death of a Parent 117 Death of a Sibling 118 Death of a Grandparent 119 Death of a Friend 120

Nondeath Losses 121 Loss of Self-Esteem/Identity 121 Loss of a Relationship 121 Loss of Health 122

Interventions With Tweens and Teens 122 Response to the Death of an Adolescent 123

Parents’ Loss of a Tween or Teen 123 Grandparents’ Grief After Adolescent’s Death 124

Typical and Maturational Losses 125 Higher Expectations for Responsibility and Independence 125 Aspects of Identity Change 125

Readings 127 A Girl Unlike Other Girls 127

Katharine Baratz Dalke

Contentsx

Bereavement After Losing Friends to Homicide: Two African American Teen Girls Speak 131 Celeste M. Johnson

Sophie’s Move to a Residential Care Facility 136 Bonnie Fader Wilkenfeld

Summary 140 Discussion Questions 141

6. Emerging Adults 143 Objectives 143 Developmental Stage: Adult Sufficiency or Insufficiency 144

Biological Development 144 Psychological Development 144 Social Development 145

Losses Experienced by Emerging Adults 146 Death Losses 146

Death of a Parent 146 Death of Friends/Lovers 149

Nondeath Loss 150 Chronic and Life-Threatening Illness 150

Death of an Emerging Adult as Experienced by Others 151 Parents’ and Others’ Responses to an Emerging Adult’s Death 151

Typical and Maturational Losses 152 Loss of Economic Viability 152 Loss of a Love 153 Substance Use Disorders 154

Interventions 155 Readings 156

Grief, Resilience, and Healing During Emerging Adulthood 156 Natalie Carlos Cruz

Emerging Adulthood: Hereditary Breast and Ovarian Cancer 160 Allison Werner-Lin and Lindsey M. Hoskins

Inheriting an Unfortunate Legacy: Growing Up Fatherless by Suicide 164 Chris Michael

Summary 169 Discussion Questions 170

7. Young Adulthood 171 Objectives 172 Developmental Crisis: Intimacy Versus Isolation 172

Biological Development 172 Psychological Development 172 Social Development 173

Losses Experienced by the Young Adult 173 Death Losses 173

Death of a Parent 173 Death of a Life Partner 174

Nondeath Losses 178 Parental Divorce 178 Loss and Problems Related to U.S. Military Service 179 Chronic Illness 180

Contents xi

Others’ Experience of a Young Adult’s Death 180 Loss of a Young Adult as Experienced by Young Adult 180 Parents and Siblings Experiences of a Young Adult’s Death 182

Typical and Maturational Losses in Early Adulthood 182 Loss of Young Adult’s Ability to Pursue Their Vocational/Career

Aspirations 182 Delaying Decisions About Childbearing 183 Losses Connected With the Transition to Parenthood 184

Readings 186 Loss of a Child: Case of Lisa 186

Roseanne Muscarella The Impact of Intimate Partner Violence on Adult Development 190

Barbara Gillin Connecting and Disconnecting: Losses From Leaving Street-Based

Sex Work 196 Corey Shdaimah

Summary 200 Discussion Questions 201

8. Middle Adulthood 203 Objectives 203 Developmental Crisis: Generativity Versus Stagnation 204

Biological Development 204 Psychological Development 205 Social Development 206

Loss as Experienced by Midlife Adults 206 Death Losses 206

Death of a Parent 206 Death of an Adult Child 207 Death of a Sibling in Adulthood 208 Death of a Cousin 210

Nondeath Losses 210 Facing a Chronic or Life-Threatening Illness or Disability 210 Loss/Transition of Employment 211 Divorce 212

The Loss of a Midlife Adult as Experienced by Others 213 Death of a Life Partner 213

Death of a Nonmarried Partner 214 Typical and Maturational Losses of Midlife Adults 216

Loss Experienced by Parents When Children Leave Home 216 Loss of the Family Home 217 The Transformation of Identity and “Letting Go” of Past

Dreams 217 Intervention 218 Readings 218

I Lost My Cousin 218 Judy Catterton

Losing Jack: Accidental Death of a Spouse in Midlife 222 Jean

Finding the Way . . . Again 227 Clare Smith

Contentsxii

Job Loss in Midlife 231 Kudu

Summary 233 Discussion Questions 234

9. Retirement and Reinvention 235 Objectives 235 The Transition to the Third Quarter of Life: Reinvention and

Retirement 236 Retirement: Diverse Pathways/Models/Meanings 237 Losses Experienced by the Adult During Retirement and

Reinvention 238 Loss and Transformation of Identity 238 Loss of Routine: Search for Balance 241 Loss of or Change in Work Relationships 242 Loss of Financial Resources 242

Typical and Maturational Changes/Losses 243 Loss of or Change in One’s Belief System: The Importance of Spiritual

Growth 243 Changes Within the Marital/Partner Relationship 243 Changes in Relationships With Friends 245 Changes in Relationship With One’s Community 245

The Process of Change: Coping With the Transition Process 246 Loss of a Retirement/Reinvention Adult as Experienced by Others 247

Adult Children 247 Parents 247

Readings 248 Retirement 248

William P. Miller Reflections on Retirement—1 Year Out 250

Marcia Krayton Goldstein Jean Haskell’s Story 253

Jean Haskell Retirement Is Not a Dirty Word 255

Norma Bolden Summary 257 Discussion Questions 258

10. Older Adults 259 Objectives 260 Developmental Crisis: Integrity Versus Despair 260

Biological Development 260 Psychological Development 261

Developing a Point of View About Death 261 Social Development 262 Positive Aging—A Paradigm Shift 263

Losses Experienced by the Older Adults 264 Death Losses 264

Loss of Partner 264 Death of an Adult Child 267 Death of Friends 269

Contents xiii

Resilience in the Face of Death Losses 269 Suicide Among Older Adults 269

Nondeath Losses 270 Coping With Chronic Life-Threatening Illness 270

Typical and Maturational Losses 271 Loss of Home/Relocation 271 Grandparent Caregivers 273

Intervention 273 Meditation as an Intervention for Older Adults 273

End-of-Life Issues 274 Palliative and Hospice Care 274 Death With Dignity—Patients’ Rights at the End of Life 276

Readings 277 The Ever-Changing Landscape for Hospice Social Workers 277

Michelle Brooks End of Life as a Military Veteran: Wesley’s Story 281

Patricia A. Findley Summary 286 Discussion Questions 287

11. Conclusions 289 Objectives 289 Accompanying the Bereaved in Their Grief 290 Maturational Losses as Disenfranchised Losses 291 Importance of the Dual Process Model of Coping With

Bereavement 293 Importance of Continuing Bonds 294 Meaning-Making as a Process of Growth 295 Trauma and Grief 296 Grief Counseling Efficacy and Hidden Losses 297 Grief and the Clinician: Cautions 298

You Cannot Bypass Grief 298 Take Care of Yourself 298

Discussion Questions 299

References 301 Index 341

xv

Preface

This new edition of our book has been a labor of love—for the new grief literature that we got to include, as well as for the chance to share it with students and clinicians. Our first edition came as a result of our work together as consultants and our shared frustration about the dearth of texts that could meet the needs of the Grief and Loss classes we each taught. Our philosophy that loss is at the heart of growth and that death loss is only one type of loss animated our work. We were happy to share new information about continuing bonds, meaning-making, disenfranchised grief, and the dual process model in our first edition, and have enjoyed hearing from instructors and students about how helpful the text has been.

Sheri W. Sussman, our editor extraordinaire for the first edition, contacted us to discuss a second edition and we were thrilled. The field of grief theory and intervention has been growing rapidly, informed by trauma theories, neu- robiology, and new interventions. Further, social media and other technolo- gies have been changing the way we mourn. We were delighted to have the opportunity to collaborate and update these areas in this second edition.

Death and Dying courses in social work, nursing, counseling psychology, and medicine traditionally focused on topics such as the experi- ence of dying, the delivery of health care during the end of life, and the experi- ence of mourning after a death. Classic texts such as Rando’s (1993) Treatment of Complicated Grief; Worden’s (2002) Grief Counseling and Grief Therapy; and Parkes, Laungani, and Young’s (2000) Death and Bereavement Across Cultures have been joined by newer ones, yet we believe our text offers a unique bio- psychosocial perspective. We include neurobiological aspects of develop- ment and grieving as we truly believe our students need to understand these aspects of biology if they are to claim a biopsychosocial perspective in the 21st century. Also, identification of maturational losses and the developmental aspects of grieving are foci seldom found in typical texts that address grieving and loss, though we believe they are quite important. The readings that end each life-stage chapter enliven the pedagogical material and add additional dimensions to the material. We have developed ancillary materials available to qualified instructors (e-mail textbook@springerpub.com) that include out- lines, PowerPoints, and activities for each chapter and have also included the readings from our first edition to supplement the case materials available to readers of the second edition. We hope this second edition helps each reader feel prepared to help grievers of all ages and types.

xvii

Acknowledgments

We have many to acknowledge and thank for their help in our work with this text. First, we would like to thank the instructors, students, and clinicians who have given us feedback on the first edition. All have helped us to improve and update this edition. Second, we thank our “Readings Writers” who wrote the readings at the end of each chapter and are experts, sometimes academically and often experientially. We appreciate your willingness to share your stories to enliven this text. Third, we want to thank our clients and research partici- pants who have shared their loss experiences and meaning-making thereby teaching us ever more about the subtleties and nuances of multiple types of loss. Fourth, we owe gratitude and respect to the people who taught us about grief and loss experientially: for Judie McCoyd those include Judy Achuff (high school “best friend”), Eunice and Ben Maurer (grandparents), Mary and Walter McCoyd (in-laws), and Doug Moyer (sibling). For Carolyn Walter, these experiential lessons of loss started early and included Joseph Penrose Ambler (father) and John Walter (first husband) who taught Carolyn many important lessons in grief, recovery and meaning-making. Fifth and not least, we thank Jim Baumohl for his close editing of most of the chapters to help us clarify our points and protect us from garrulousness and vagueness.

We give deep thanks to our family and friends who have supported us in this endeavor. Carolyn Walter thanks her husband, Bruce, for supporting her through many difficult moments in writing this second edition, as well as friends, Norma, Janet, and too many to name! Carolyn also thanks the grad assistants at Widener who helped gather recent literature for this second edition. Judie McCoyd thanks all her friends, especially Corey Shdaimah and Anne Dalke, who helped her navigate recent rough transitions. Great thanks to Jim Baumohl for his “over and above” help with editing and the household.

Finally, we wish to thank Sheri W. Sussman at Springer Publishing Company for believing in us and this book enough to ask us for this second edition. We are grateful to be working with her.

Share Grief and Loss Across the Lifespan: A Biopsychosocial Perspective

1

ONE

Introduction

Loss is at the heart of life and growth. When we wrote this in the first edition of this text, it reflected a relatively new understanding of some functions of loss and grief. Now, nearly a decade later, it is not at all controversial. Life changes and maturation are understood to result from losing (changing) an attachment relationship, a prior lifestyle, a behavior pattern, or otherwise modifying the status quo. We regularly encounter books that suggest that individuals grow and mature as a result of loss (Okun & Nowinski, 2011). Still, we are cautious and observe Klass’ admonition (2013) to avoid approaching grief as if it will always create growth and we recognize that the sorrow involved may linger. Yet, as practitioners who strive to assist clients in their growth, we must be aware that change and maturation, even toward a more positive state of func- tioning, often involve losses that are unrecognized, but felt nonetheless.

We offer this text to reflective practitioners of all levels of experience, as well as to educators searching for a text on loss that explicates developmen- tal differences. We have significantly revised this edition with new literature, more information about technology and social media, integration of new neu- robiological understandings and discussion of how attachment, trauma, and mindfulness practices may intersect with grief and loss. We believe that our focus on loss as a normal, though destabilizing, experience has been welcomed by educators, practitioners, and grievers because it reflects more closely the experiences they have gone through following losses of various sorts.

Here, we convey the most recent understandings of loss and grief theory, trauma and attachment theories, developmental aspects of grief from a bio- psychosocial perspective (including neurobiological and genetic information), research on specific responses to loss situations, and discussion of interven- tion strategies that are supported by practice wisdom and empirically based research. Normal maturational changes are recognized not only as growth, but also as a special form of loss in which one is expected to delight in the growth and ignore the loss aspect of the change, a perspective we challenge. The customary, destabilizing force of loss promotes self-reflection and this can lead to growth, particularly when the mourner’s experience is validated and supported.

Our approach toward what is customary or typical is quite deliberate. We not only identify various losses that are common during different developmen- tal stages, but maintain that loss and subsequent grief is normal. We are using the term normal in the sociological sense meaning that it reflects statistical norms: It reflects the most common experience. We are not using it to indicate that there is moral content attached to the occurrence. Loss and grief, though uncomfortable, are part of human existence and can produce growth and

Grief and Loss Across the Lifespan2

insight, with or without professional help, though we believe that most people process losses more easily when they talk with someone. Although compli- cated grief reactions exist, most grief is not pathological. As practitioners, we have learned that most people are able to cope with even tragic loss when they have someone who is able to accompany them on their grief journey. We hope to help you, the reader, feel comfortable helping grievers of all types.

We hope this text allows practitioners to understand how the experience of grief is influenced by biological responses to stress, psychological responses to loss in the face of previous attachments, and by social norms and supportive others. We further hope that this understanding allows practitioners to concep- tualize their work in ways that allow the mourner to make meaning of the loss and process it in each griever’s unique way. We envision a practitioner who may seem passive in not “pushing” one grief model, but who actively helps the mourner explore her or his new identity in the face of the loss. Good grief work allows the mourner to learn more about themselves and their “fit” in the world and to grow as a result of the work the practitioner and griever do together.

TEXT STRUCTURE

This text is arranged so that each level of development from infancy through aging will be addressed in four ways. Each chapter opens with a vignette about an individual who is experiencing losses characteristic of a specific age group. The objectives of the chapter follow each vignette. (For this chapter that has no vignette, they will be found between this section and the main content of the chapter.) This is followed by a review of normal developmental issues for that age, particularly the abilities and challenges that are specific to it. The next section describes how an individual of that age tends to cope with a death loss. The third section addresses how an individual of that age may experience her or his own life-threatening illness and how significant others tend to react to and mourn the death of someone in that age range. The fourth section of each chapter identifies the typical losses someone of that age is likely to expe- rience and addresses protective and risky ways of coping with those losses. Each chapter ends with short readings by experts who share a broader range of losses, while also providing intervention suggestions from practice wisdom and empirically supported research perspectives.

Typical losses are those that are relatively common to a specific age group, but which often are met with little support precisely because they are “normal.” Pet loss, for example, is likely to occur during the school years, just as the loss of a romantic relationship is common in emerging adulthood. These are examples of typical loss. Off-time losses occur during a stage of life where they are not expected. Although parents often die when children have reached middle age, it is considered an off-time loss when a parent dies during a child’s adolescence or emerging adulthood. Off-time losses are more challenging because few peers are available to provide role models for grieving, peers may distance themselves due to unfamiliarity and discomfort, and formal support resources may not be appropriately responsive because the loss is off-time.

Other typical losses are due to development and we refer to these as maturational losses: for example, when a toddler loses unconditional

1 Introduction 3

positive regard and is no longer viewed as “cute” for misbehavior, but is held accountable; or when a young adult marries and must give up the freedom of single living. We believe maturational losses to be a form of “disenfranchised grief” (Doka, 2002). In this volume we name such losses, recognizing that until named they cannot be acknowledged and mourned. We also sound a note of caution that while recognition of the loss is necessary, overt mourning is not always required.

OBJECTIVES

After reading this chapter the reader will be able to:

■ Review biological impacts, psychological experiences, and social contexts of grief. ■ Trace the evolution of classical grief theory to the task- and stage-based grief theories of the modern era.

■ Describe postmodern grief theories including the dual process model (DPM), meaning-making, continuing bonds, disenfranchised loss, ambiguous and nonfi- nite loss.

■ Explore cultural impacts and the role of ritual in coping with loss. ■ Provide social and historical context for grief therapeutics, including recent changes in the DSM-5.

■ Discuss concepts of mindfulness, attachment, and cultural humility and their intersection with grief work.

■ Utilize the perspective that loss is a normal and necessary part of life.

BIOPSYCHOSOCIAL ASPECTS OF GRIEF

As our title indicates, we take a biopsychosocial perspective on grief and loss across the life course. This requires that biological aspects of human devel- opment, including neurobiological and other physical changes, be incorpo- rated into our thinking as well as the more typical psychological and social aspects of development. Much of this material will be new to many clini- cians, yet practice in the 21st century requires that mental health practitioners of all stripes understand immunological, hormonal, and other biochemical responses humans have to stressful events; genetic and epigenetic influences on psychosocial behavior (and vice versa); and the neurobiological impacts of grief and trauma. We provide ample citation so that readers may explore this material in more depth.

Biological Effects of Grief

The association of higher mortality with bereavement has been strong, long-lasting, and significant (Parkes, Benjamin, & Fitzgerald, 1969; Stroebe, Stroebe, Gergen, & Gergen, 1981). Although some older studies found no

Grief and Loss Across the Lifespan4

statistical significance to risk of death after loss (Clayton, 1974), more recent studies confirm that individuals can and do “die of a broken heart” at dou- ble the rate of nonbereaved people matched for age and other demograph- ics (Carey, Shah, DeWilde, Harris, & Victor, 2014; see also www.sciencedaily .com/releases/2014/02/140225101258.htm). Additionally, widowers die at higher rates than widows (Stroebe & Stroebe, 1993). How and why does that happen? What are the biological mechanisms that function to put grievers at risk? How might practitioners intervene to promote health after the death of a loved one?

Explaining the complex mechanisms of morbidity and mortality due to a “broken heart” is beyond the scope of this book. However, a basic understand- ing of how immune systems, genetic/epigenetic factors, neurological systems, and cardiovascular (and other organ) systems can be affected by stress and grief (and by depression and anxiety) helps practitioners recognize the impact of psychosocial factors on physical health and think about how to promote health despite bereavement. For those interested in more detail, Koch (2013) provides a useful summary of diseases caused by mind–body interactions including “broken heart,” otherwise known as Takotsubo cardiomyopathy.

Popularly, physical health is viewed in Western societies as “about the body” and psychological well-being is “about the mind/brain.” Yet, the inter- action of mind and body has been assumed in some cultures for eons, and the recent embrace of mindfulness and other practices originating in Eastern religious and cultural practices has shed light on those interactions (Siegel, 2010a, 2010b). Often, people have associated positive emotions with good health (Seligman, 2012), yet recent findings strongly indicate that a mix of positive and negative emotions (tempering bad with good and good with cau- tion) actually seem to promote health even better (Hershfield, Scheibe, Sims, & Carstensen, 2013). The interactions of emotions, stress, trauma, and physical health are mediated through immune, genetic, hormonal/biochemical, and neurological functions, all of which impact organ functions.

The immune system is one of the most potent mediators of mental and physical health in connection with levels of expressed emotion (Brod, Rattazzi, Piras, & D’Acquisto, 2014; Salovey, Rothman, Detweiler, & Steward, 2000). A significant body of work (well summarized in Salovey et al., 2000) shows that negative emotions decrease secretory immunoglobulin A (S-IgA), which then causes individuals to be more susceptible to infection by viruses such as the common cold. Likewise, the negative emotions of grief reduce the immune system’s efficiency and provoke inflammation, which has negative cardiovascular (Gianaros et al., 2014) and neurological effects.

Although genetic endowment is frequently viewed as static, new under- standings about how genes are “turned on and off” has led to new understand- ings of how genetic expression changes as a result of environmental stresses (McCoyd, 2014; Rothstein, 2013). Further, the genome is actually changed over time in ways that can be passed down to offspring (epigenetics) (Bienertová- Vašků, Nečesánek, Novák, Vinklárek, & Zlámal, 2014; Zucchi et  al., 2013). Some of these genetic and epigenetic effects involve exposure to stress for extended periods of time, which has clear implications for people who are stressed by grief. Yet, genetics is even theorized to play a part in the differ- ences between people who experience complicated grief and those whose

1 Introduction 5

grief follows a more customary trajectory (O’Connor, Schultze-Florey, Irwin, Arevalo, & Cole, 2014; Schultze-Florey et al., 2012). Indeed, the Mindfulness practices that we suggest for help with managing grief have been shown to help calm the inflammatory response believed to negatively impact both immune system function and genetic expression (the inflammatory response is regulated by genes) (Creswell et al., 2012). In short, we should not neglect the reciprocal relationship between genetics and grief.

Neurotransmitters and other neurochemical interactions also play a role in the interaction of mental and physical health. The major mediator of brain chemistry under stress is the hypothalamic–pituitary–adrenal axis (HPA), which, when activated, causes a release of cortisol, the stress hormone. Norepinephrine and adrenocorticotropin hormone (ACTH) are also released when the HPA is activated, with rises in ACTH typically creating a feedback loop with cortisol (which then rises, ideally leading to lowered ACTH pro- duction). This feedback loop seems to break down in depressed and stressed individuals, with cortisol staying elevated. Children and youth are reported to have disturbed cortisol functioning after the death of a parent: the cortisol awakening response becomes blunted and heightened levels of cortisol remain in their systems (Dietz et al., 2013; Kaplow et al., 2013)

Other work (Gundel, O’Connor, Littrell, Fort, & Lane, 2003; O’Connor, Gundel, McRae, & Lane, 2007) has focused on the neuroanatomy of the brain. Researchers used functional magnetic resonance imaging (fMRI) to scan acutely bereaved individual’s brains after interviewing them about their loss. They found indications that the posterior cingulate cortex, the cerebellum, and the inferior temporal gyrus are all affected; each has a role in autobiographical memory and creation of the “storyline” of individuals’ lives. Freed, Yanagihara, Hirsch, and Mann (2009) showed that differing levels of attention to one’s grief are associated with changes in the way the amygdala (the “emotion center” of the brain) interacts with the dorsolateral prefrontal cortex (where “thinking” and executive functions process emotions and meaning). These changes suggest that rumination (attention focused unremittingly on grief) may create neuroanatomi- cal changes over time. O’Connor et al. (2008) have shown that the reward center where attachment “shows up” is stimulated when individuals with complicated grief are examined with functional magnetic resonance imaging (fMRI): both pain and reward centers are stimulated as reminders of the attachment figure who died are shown whereas those with customary grieving show only the pain. In short, grieving affects both the neurochemistry and structure of the brain.

The cardiovascular system is affected by psychological factors due to the disruption of hormones like cortisol and neurotransmitters like norepi- nephrine and ephedrine (Lazzarino, Hamer, Gaze, Collinson, & Steptoe, 2013). Mental health factors that create stress on the cardiac system constitute another mechanism through which bereavement is related to morbidity and mortality (Dande & Pandit, 2013; Stroebe & Stroebe, 1993).

With such issues in mind, it is important for the grief counselor to pro- mote physical health. Regular exercise, balanced diet with an increase of B vita- mins and antioxidants, increased omega-3, and exposure to light (Zisook  & Shuchter, 2001) can all be encouraged. Urging a checkup by a physician is rec- ommended, along with encouraging self-care and decreasing risks during the bereavement period.

Grief and Loss Across the Lifespan6

Psychological Effects of Grief

Development plays an important role in the processing of loss. This text explains many of the psychological aspects of grief and loss at each developmental phase of life and addresses the impact of cognitive functioning and development on the understanding of death. Our motivation for this text is to integrate under- standings of loss with knowledge of human development over the life course. We assume that every loss is framed within the griever’s stage of development. When a loss happens in childhood, that loss will need to be reworked as devel- opment proceeds; the loss of a sibling at the age of 7 will need to be reassessed in adolescence and young adulthood as the secondary losses inherent in the death evolve. The 7-year-old will miss his or her brother as a playmate, but the 35-year-old may miss the help of a sibling with aging parents’ needs.

Grief nearly always entails psychic pain, challenges in coping, and irri- tation, sadness, and rumination. Less commonly discussed is the heightened sense of vulnerability and fear that accompany grief (Sim, Machin, & Bartlam, 2014). Although clinicians working with grievers have long known that newly bereaved individuals fear another loved one dying and often become afraid to go out into the world or sleep alone at night, this aspect of grief has not received the attention it deserves. Loss stimulates an acute sense of vulnerability and subsequent hypervigilance just as trauma does (Lopez Levers, 2012). Rando (1993) captured this in her extensive list of symptoms of grief, yet vulnerability is seldom recognized as an expected aspect of grief. Helping grievers recog- nize this customary part of grieving helps them to feel less frightened and “crazy” when they feel anxious.

Rando (1993) also echoed Simos’ (1979) observation that major losses are made up of many smaller, secondary losses. For example, the death of a parent during childhood is a tragic loss of an attachment figure, but also incorporates losses of guidance, economic support, a sense of a secure base, a protector, etc., not to mention losses of friends and a familiar school if adjustment requires a new living situation. For a griever to fully mourn the primary loss, these sec- ondary losses must be recognized and validated.

Rando (1993) also described how time and grief interact. Although many grief theorists and others try to put a time limit on grief, she recognized that grief continues to be felt long after the acute phase resolves. The “anniversary reac- tion” wherein the griever has a Sudden Temporary Upsurge of Grief or STUG reaction is an example (1993, pp. 64–77). At times, the griever may not even be conscious of the occasion, yet feels dysphoric every April, the month a loved one died earlier in the griever’s life. STUG reactions can be inspired by something as commonplace as hearing a song or having a reminder of the loved one.

Practice wisdom has long held that multiple losses accumulate, leav- ing more intensity to grief. However, while the nursing literature is rife with discussion of cumulative grief because nurses experience loss when patients die (Marino, 1998; Shorter & Stayt, 2010), few empirical studies have directly explored it. Some of the better research does not find the expected negative outcomes of cumulative grief (Cherney & Verhey, 1996). Nursing literature notes the possibilities for burnout and compassion fatigue while Cherney and Verhey (1996) suggested that there could be adaptive habituation to grief. This is an area where much more research is necessary.

1 Introduction 7

Still others note the role of cumulative grief through historical and other losses in addition to death losses (Brave Heart, 1998) and persuasively argue that prior losses create a backdrop that can impede coping with new losses. As it is likely that individuals manage cumulative losses differently, the clinician needs to take a thorough and accurate history, including the prior losses (of all kinds) experienced and the griever’s response to them. We also believe that losses due to development will be part of this cumulative load.

Social Aspects of Grief

Social rituals are fundamental to most important transitions, including those provoked by loss and death. Traditionally, funerals were grounded in reli- gious practice and a community of believers and provide a deeply social way of mourning losses (Parkes, Laugani, & Young, 2000). Yet, as Parkes et al. observed, by the 1990s fewer U.S. citizens participated in organized religion and its mourning rituals. Recent studies suggest that fewer U.S. or European citizens engage in religious funerals than in previous generations (Norton & Gino, 2014). Yet, Norton and Gino (2014) show that the use of specified per- formed behavior defined as ritual is useful in both allowing a griever to have a sense of control and to lower levels of grief and mourning. Reeves (2011) asserts that a ritual involves “out of the ordinary” (p. 409) activities, at least one other person, and symbols of the lost entity. Vale-Taylor (2009) observes that as Western societies become less religious, hospice services of remembrance now often provide secular or ecumenical rituals for the bereaved. Creative activities that memorialize the deceased, assist the grieving, and support the caregivers, are also increasingly being used to aid mourning (Bertman, 2015).

Undoubtedly, technology is changing the way people are socialized generally (boyd, 2014) and in the realm of death and dying. The evolution of social media and other technologies has also had an impact on grief and loss. In the absence of shared religious rituals, some communities turn to Facebook and other Internet sites to share their grief (Falconer, Sachsenweger, Gibson, & Norman, 2011). Indeed, group treatment modalities for support after loss are arising on the Internet despite some resistance from traditional group work prac- titioners (Lubas & De Leo, 2014). Websites are designed to help confront death anxiety and avoidance (www.orderofthegooddeath.com) and  virtual memori- als are becoming ubiquitous (www.forevermissed.com; www.legacy.com/ns; www.muchloved.com/g_home.aspx; www. virtual-memorials.com).

When social expectations are violated, grief and grieving are affected. Disenfranchised grief and ambiguous grief (both discussed later in the post- modern theories section) derive from inconsistencies between the feelings of the griever and what is culturally recognized as a “real” loss, and an “allow- able” state of grief. Such “feeling rules” (Hochschild, 1979) vary by religious, national, ethnic, and generational contexts. Some have explored the “sympathy biography” (Clark, 1987) that defines what losses and events generate sympa- thy and how sympathy functions as something exchanged among friends and family with an awareness of what is fair trade. Norms and rules about losses to be mourned and the people entitled to mourn them (and for how long) are social creations not artifacts of biology or individual psychology.

Grief and Loss Across the Lifespan8

One aspect of the social world is the set of assumptions each person car- ries about the way the world works. It is a set of assumptions (e.g., my hus- band will always be there to kiss me good night; children outlive their parents) that make the world familiar and predictable. This is known as the “assumptive world.” Traumatic events violate it and trigger distress (Janoff-Bulman, 1989, 1992). Attig (2001) asserts that bereavement requires that the mourner “relearn the world,” another way of recognizing that assumptions must be revised and one must learn how to live in the new world without the loved one. Parkes (1988) defines grief as a psychosocial transitional state necessitating a readjust- ment of assumptions:

For a long time it is necessary to take care in everything we think, say, or do; nothing can be taken for granted any more. The familiar world sud- denly seems to have become unfamiliar, habits of thought and behavior let us down, and we lose confidence in our own internal world. (p. 57)

Although Parkes implies this is primarily an issue of “our own internal world,” the assumptive world entails assumptions that are both personal and social. We argue that the assumptive world must be understood in much the way social workers use an ecological perspective. For instance, on the micro level, assumptions exist along the lines of “I’ll pre-decease my child”; on the mezzo level, one may hold assumptions like “once a mother, always a mother”; but macro level assumptions can be violated too as when Hurricane Katrina dev- astated Mississippi and Louisiana and assumptions that “communities and the country will always take care of people when tragedy hits” were shown to be false. Whenever assumptions require revision, an individual’s world feels uncertain, yet when these assumptions are dashed at multiple levels, we would expect that the challenges of adapting and revising the assumptive world (“re-learning the world”) will be greater.

INTRODUCTION TO GRIEF THEORY

Classical Grief Theory

Task-Based Theories For everything there is a season, and a time for every matter under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up what is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance—Ecclesiastes 3:1-14 ESV

Mourning is regularly the reaction to the loss of a loved person, or to the loss of some abstraction which has taken the place of one, such as one’s country, liberty, an ideal, and so on—Freud, 1957, p. 243

Grief is as ancient as consciousness, yet is a relatively recent subject of scholarly attention. Freud was one of the first to address grief, melancholia, and

1 Introduction 9

mourning in a scholarly manner. He observed that we can mourn for things, values, and statuses, not only as a response to a death. He also assures that grief and mourning are “not pathological,” even when psychotic thoughts, feelings, and behaviors occur as an understandable (and usually normal) reac- tion to loss.

Freud proposed a “task-based theory,” predicated on the idea that the mourner must decathect from the lost entity. Freud’s theory of behavior states that the psyche cathects people and loved entities with libidinal energy and that that same libido must be withdrawn in order for a mourner to heal after loss. He believed people experiencing melancholia (what we might now call dysthymia or depression) had not successfully withdrawn the libidinal energy (decathexis) and needed help to do this. In Freud’s understanding, the next task was to transfer libido to a new love object via cathexis. He asserted (Freud, 1957) that mourning is only completed when the ego becomes free by virtue of decathecting libido from the lost love object. He suggested a year as the customary time necessary for this to occur. (As a person of Jewish heritage, despite his religious skepticism, he may have adopted the traditional year of mourning accepted and ritualized in Jewish faith.)

Freud’s was the primary theoretical paradigm for early grief work. Usually couched in the language of “letting go,” counselors have long held to the idea that a mourner must separate from their attachment to the lost entity, even if they did not necessarily view this through Freud’s theory of deca- thexis. Though simplistic, this task-based model for grief work has periodi- cally re-emerged as a template for grief work in other forms. Indeed, this task of decathexis, separation or “letting go” continues to inform practice wisdom despite the development of new understandings of loss and grief. Freud him- self set the context for some of the modern re-interpretations of grief work. He wrote to a friend who experienced the death of a child (as Freud himself had):

[A]lthough we know that after such a loss the acute state of mourning will subside, we also know we shall remain inconsolable and will never find a substitute. No matter what may fill the gap, even if it be filled completely, it nevertheless remains something else. It is the only way of perpetuating that love which we do not want to relinquish. (Translated letters, Freud, 1961)

He implies that decathexis may occur but that recathexis is not likely to fill the gap, that it “remains something else” that mourners do not relinquish eas- ily. We will return to this idea as we address the theories of meaning-making (Neimeyer, 2001) and continuing bonds (Klass, Silverman, & Nickman, 1996).

Some of the first empirical work to explore the grieving process was done by Erich Lindemann (1944), who studied the responses of grievers following the Cocoanut Grove nightclub fire in Boston in November 1942. He designed the study in advance to be fielded immediately after a tragedy so that there would be no anticipatory grief, but a sudden loss. He believed this would allow him to assess mourners’ responses more accurately. He theorized that grief normally includes somatic distress, preoccupation with the deceased, guilt, and sometimes, hostile reactions. He asserted that eight to ten sessions with

Grief and Loss Across the Lifespan10

a psychiatrist over the course of a month and a half were sufficient to man- age grief work. This was based on his findings, yet few would agree with him today. Evidence can enlighten or mislead, and research does not always pro- duce conclusions that stand up over time. The evidence in support of any “best practice” is always the best evidence at the time and always subject to revision.

Following traumatic death, Lindemann believed that tasks of grief must be accomplished, but he moved beyond Freud’s two tasks of decathexis and recathexis. He postulated the following tasks:

1. Emancipation from bondage to the deceased 2. Readjustment to the environment in which the deceased is missing 3. Formulation of new relationships.

In some ways, step one mirrored decathexis and step three mirrored reca- thexis, but Lindemann contributed the idea that this was not a totally interior, psychological process. He acknowledged in the second task that bereft individu- als must adjust to a social world in which their loved one is no longer living. Yet he defined 4 to 6 weeks as the time frame to accomplish these tasks as a norm. The unfortunate consequence of his time frame was that mourners who wanted to be perceived as healthy avoided grief expression after 4 to 6 weeks and grief work practitioners began to view grief that lasted much longer as pathological.

The time frame of grief has long been contested (Kendler, Myers, & Zisook, 2008) and the “normal” duration of grief remains controversial (Costa, Hall, & Stewart, 2007; Penman, Breen, Hewitt, & Prigerson, 2014). Penman et al. (2014) note that while more variability in grief trajectories is acknowledged today, there is still uncertainty about how to define grief that seems to be out of the norm. When the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association came out most recently (DSM-5; American Psychiatric Association, 2013), it no longer included what was called the “bereavement exception.” Previously, depressive symptoms that might rise to the level of a major depressive disorder (MDD) were excluded if there had been a death loss up to 2 months before. Many declared the 2-month cutoff unrealistic as mourn- ing often extends well past 2 months (Wakefield, Schmitz, & Baer, 2011). At this point, the focus is on diagnosing MDD when criteria are met (with recognition that grief seldom includes the level of self-loathing and feelings of worthless- ness that generally accompany MDD); for more discussion, see www.dsm5 .org/Documents/Bereavement%20Exclusion%20Fact%20Sheet.pdf).

J. William Worden (2009) has become known for a task-based grief theory and intervention framework that encompasses the following steps (Worden & Winokuer, 2011):

1. Acknowledge the reality of the loss 2. Process the pain of the grief 3. Adjust to a world without the deceased 4. Find an enduring connection with the deceased while embarking on a

new life.

Worden’s tasks provide a way to work with grievers without the assumption of “cure,” but with the expectation that grievers can be assisted in moving

1 Introduction 11

through their grief. Worden adds the experience of processing pain and many embrace Worden’s task-based strategy as it provides an action plan and a way of taking hold of a process that often feels very out of control.

These task-based theories of grief and intervention were a major step for- ward from assumptions that the bereaved were pathologically affected if they could not move on with their lives as if little of import had occurred. Freud depathologized grief and the other task-based theorists explicated what the bereaved needed to accomplish in order to heal. In the undisciplined, untidy world of grief (Foote & Frank, 1999), a structured response lends a sense that there is a map to guide the way.

Stage-Based Theories

Like Lindemann, Kübler-Ross (1969) was interested in empirical data. As part of a seminar on death and dying at Chicago Theological Seminary, she and her students talked with dying patients about their thoughts, feelings, and expecta- tions about their conditions at a time when medical practice wisdom held that patients were not to be told of their life-threatening illnesses. Her book On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families (1969) was the source of the now widely accepted and reified stages of “Denial and Isolation,” “Anger,“ “Bargaining,” “Depression,” and “Acceptance.” It is notable that following these stage-based chapters in her book, there is a chapter entitled “Hope,” a characteristic that she identifies as crucial:

No matter what we call it, we found that all our patients maintained a little bit of it and were nourished by it in especially difficult times. They showed the greatest confidence in the doctors who allowed for such hope—realistic or not—and appreciated it when hope was offered in spite of bad news. This does not mean that the doctors have to tell them a lie; it merely means that we share with them the hope that something unforeseen may happen that they may have a remission, that they will live longer than is expected. If a patient stops expressing hope, it is usu- ally a sign of imminent death. (Kübler-Ross, 1969, pp. 139–140)

Her stages of adjustment to a terminal diagnosis are now widely applied to all types of losses. Yet, her stages were developed for people who are losing their lives, not those who have lost loved ones; these are different experiences. She has become known as the mother of grief theory, yet her classic stages have been applied to a population that was different from the population she researched.

The stage of denial is particularly misunderstood. Kübler-Ross originally conceptualized it as a stage during which the diagnosed would “shop around” to ensure an accurate diagnosis and/or express hope that testing results and a terminal diagnosis were incorrect. She viewed this as a “healthy way of deal- ing with the uncomfortable and painful situation with which these patients have to live for a long time” (1969, p. 39). It is unfortunate that this stage has been widely misinterpreted and misapplied in grief counseling. It has often been viewed as a stage to be “broken through” or confronted, with counselors often applying Draconian methods to ensure that denial is not maintained in

Grief and Loss Across the Lifespan12

connection with a death loss. Indeed, Volkan (1985) developed “re-grief ther- apy” as an intervention for those viewed as pathologically bereaved. His useful concept of a linking object, an object that reminds the mourner of the lost one, is used within a therapy designed to cut through any “denial” that may remain:

Throughout treatment, patients experience a variety of emotions as they gain insight into their inability to let the dead person die. . . . The use of the linking object brings about special emotional storms that are not curative without interpretation that engages the close scrutiny of the patient’s observing ego. (Volkan, 1985, pp. 289–290).

This assertive confrontation of denial has become one of the suspect inter- ventions associated with early grief work counseling. The fact that denial is viewed as a stage to break through, rather than as the protective adjustment time that Kübler-Ross described, reveals one of the difficulties of stage the- ories more generally. Both the bereaved and less reflective practitioners can view these models as a recipe, an intervention plan to be broadly applied. This assumes a one-size-fits-all quality to mourning. It also implies that knowledge of the stages or phases can allow one to move more quickly through them—a fallacy with major implications.

Kübler-Ross’s model of moving from protective denial to a state of anger and irritation (in her study, often directed at caregivers) is usually viewed as a one-way journey. It is portrayed as if an individual, once in touch with the real- ity of their loss, will now become angry (either at the lost loved one or at others), and will then move into a bargaining stage. Clinical work with bereaved indi- viduals shows that anger and irritation flare throughout bereavement. Further, the bargaining that was so intuitive with the terminally ill patients Kübler-Ross interviewed (e.g., if I make amends to everyone I have wronged, I will get well/ improve) seems less applicable to the bereaved. Once aware of the loss, par- ticularly a death loss, there is little that the bereaved has to bargain for as they are aware that the loved one is, according to the resolution of the denial stage, already dead. Yet grief work counselors sometimes believe that expressions of bargaining are necessary before a client can move into the depressive states so characteristic of grief. Once a bereaved individual moves into expressions of sadness, tearfulness, and depressed activity, their family and friends (as well as professionals) then recognize this stage as classic grief and mourning.

The bereaved individual may fluctuate among the various stages and “acceptance” comes gradually (most often), not in one delineated event. The stages imply a progressive, linear movement through the stages (characteris- tic of theories of the “modern” era) rather than the back and forth movement seen most commonly among the bereaved. It is notable that “acceptance” for Kübler-Ross’ population has a very different quality than that of the accep- tance of loss by a bereaved person. For Kübler-Ross:

Acceptance should not be mistaken for a happy stage. It is almost void of feelings. It is as if the pain had gone, the struggle is over, and there comes a time for “the final rest before the long journey” as one patient phrased it. This is also the time during which the family needs usually

1 Introduction 13

more help, understanding, and support than the patient himself. While the dying patient has found some peace and acceptance, his circle of interest diminishes. He wishes to be left alone or at least not stirred up by news and problems of the outside world. (Kübler-Ross, 1969, p. 113)

This is quite different from acceptance in the bereaved, from whom we expect more breadth of emotional expression (including happiness occasion- ally), more involvement with prior interests and more engagement with the greater world. These differences are seldom acknowledged in the simpli- fied formats often provided as the stage theories for loss. Kübler-Ross was quite clear that these were stages characteristic of individuals who were dying, and might not apply to other populations, although she later said they could apply to the bereaved as well (Haupt, 2002), a claim about which we are skeptical. She cautioned against believing stages will occur in exact sequences. This caution is seldom incorporated when people learn the stages she postulated, with the result that a fluid and complex process is given a mechanistic cast.

A second classic stage theory grows from the empirical data of Bowlby (1998) who followed the children of World War II as they were separated from their parents in war zones and cared for in safer areas. He later studied wid- ows (and a few widowers) and believed that this population confirmed his findings in the study of children. He postulated stages of:

■ Numbness—defined as being shocked and stunned, not as denial; Bowlby identified the protective nature of this stage.

■ Separation anxiety (yearning/searching)—defined as an alternating state of  despair and denial, with anger folded in, much like that found in chil- dren separated from parents. He claimed that pathological grief is charac- terized by being stuck in one of these modes—either yearning, or angry and detached.

Thus anger is seen as an intelligible constituent of the urgent though fruitless effort a bereaved person is making to restore the bond that has been severed. So long as anger continues, it seems, loss is not being accepted as permanent and hope is still lingering on. (Bowlby, 1998, p. 91)

■ Despair and disorganization—As the loss sinks in, there is an attempt to recognize the loss and develop a “new normal.” It is a time of lost objects (keys, etc.) as well as lost thoughts and lost time.

■ Acquisition of new roles/reorganization—When the bereaved relinquishes attempts at preparing for the deceased’s return (gets rid of clothes, etc.) and moves into new aspects of life and relationships with others, the bereaved is understood to move through reorganization.

Bowlby’s (1998) stages are reminiscent of what he recognized in children: they yearn and pine for their parent when separated. He theorized that the attachment style that the child exhibited (secure, anxious, avoidant [Ainsworth,

Grief and Loss Across the Lifespan14

Blehar, Waters, & Wall, 1978]) would influence the impact of loss and that children who were less secure in their attachments would be more likely to exhibit anxious or detached feelings when experiencing a loss. He and others have speculated that these influences carry on into adulthood, with adults’ grief reactions to loss influenced by their attachment styles. Additionally, as the quote illustrates, he recognized that anger acts as a barrier to processing grief and that the bereaved only begin to move through their grief once anger subsides.

Since Bowlby’s observations about the direct relationship of the level of attachment to the loved object and the degree of loss, many researchers have explored the ways that attachment styles inform the grief process (Field & Wogrin, 2011; Zech & Arnold, 2011). For example, anxiety is said to be higher, with subsequent intensity to grieving and yearning, when the attachment styles of the bereaved are less secure. Insecure attachment styles are corre- lated empirically with difficulties in grieving, but the ambiguous validity of measures of conceptual categories such as degrees of attachment and nonat- tachment, and bonded versus nonbonded relationships makes research at the intersection of attachment and bereavement challenging (Shaver & Tancready, 2001). Regardless of attachment style, clinical experience indicates that the level of fondness and connection positively correlate with the level of grief and mourning.

As important as the attachment style of the griever and the degree of con- nection in the lost relationship may be, it is also true that the bereaved experi- ence uncertainty about the future. This is understandable as many plans are abruptly changed through loss and separation. Uncertainty may provoke anx- ious behavior and a heightened sense of vulnerability. Sometimes this anxiety provokes attempts to defend against attachments and that may subsequently leave the individual isolated at the very time they are most in need of support.

Maciejewski, Zhang, Block, and Prigerson (2007) explored the stage the- ories of Kübler-Ross (1969) and Bowlby (1998) and found more support for Bowlby’s stages, though aspects of Kübler-Ross’s stages were present. They studied 233 bereaved individuals over the course of two years and concluded that stages of disbelief, yearning, anger, and depression all had discrete peaks over time. They found that “acceptance” ran as a concurrent trend in a linear, positive fashion. Almost immediately, their findings were questioned. Roy- Byrne and Shear (2007) asserted that the authors had “overstated their find- ings” and that they “drew oversimplified conclusions that reinforce formulaic, unhelpful ways of thinking about bereavement” (http://psychiatry.jwatch .org/cgi/content/full/2007/326/1?q=etoc). Concerns about stage theories remain: the idea that they are applicable to all and that they seem like recipes for grief are the more problematic of these concerns.

A recent classic comes from the work of Therese Rando (1993). Although framed as processes rather than stages, Rando argues that individuals move through similar phases (whether stages or processes) that are fairly universal. She identifies these as the Six “R” processes—a blend of stage (phase in her language) and task-centered models that she asserts lead to the outcome of a healthy grieving process. Her model (Rando, 1993, p. 45) is below and con- sists of phases and tasks for the mourner to accomplish in each phase. It is

1 Introduction 15

prescriptive in that it describes a process the bereaved must experience if they are to proceed toward healing. Note that the titles of the phases and subphases are Rando’s (1993), followed by our description of their meaning.

AVOIDANCE PHASE 1. Recognize the loss—The bereaved must acknowledge and understand

the reality of the death.

CONFRONTATION PHASE 2. React to the separation—The bereaved must experience the pain of the

loss, give it expression and mourn secondary losses. 3. Recollect and re-experience the deceased and the relationship—The

bereaved is to review and remember the relationship realistically and also review and re-experience the emotions that arise as they remember the relationship.

4. Relinquish the old attachments to the deceased and the old assump- tive world—The bereaved is to let go of previous bonds and beliefs and develop a “new normal” with new relationships and attachments.

ACCOmmODATION PHASE 5. Readjust to move adaptively into the new world without forgetting the

old—The bereaved is to revise his or her assumptive world; develop a new relationship with deceased; adopt new ways of being in the world and form an identity not predicated on the presence of the deceased.

6. Reinvest—This is a time to invest in new relationships and roles and indi- cates a resolution to active grieving.

Although Rando (1993) provides a model with more room for individ- ualized tailoring of the treatment process, the model assumes that compli- cated grief is common and requires treatment when grief is deemed to be too extended, too brief (or absent), or when it does not follow the trajectory outlined in these various stage and process models. Despite Rando’s obvious compassion and concern for bereaved people, her model is subject to some of the same criticisms noted above. These models are of the “modern” era: all progress is forward and the map is the same for all. The model is normal and deviation is considered abnormal. Yet pathologizing variation in a highly variable process like grief seems rather obtuse from the “postmodern” per- spective that is skeptical of essences and “natural uniformities” in the social world.

THE GRIEF WORk HYPOTHESIS Task and stage-based theories imply a specific way to work on or “evolve in” one’s grief. The primary activity is emotional processing and the good griever actively works on his or her loss. This is known as the Grief work hypothesis—and it was discredited in the early 1990s (Stroebe & Stroebe, 1991) although still cited in the late first decade of the 21st century (Costa et al., 2007). The grief work hypothesis assumes that emotional ventilation (crying, mourning, anger) needed to be expressed before one could begin to heal from a significant loss. The implication was that if this

Grief and Loss Across the Lifespan16

type of ventilation did not occur and the person was seemingly healthy, the attachment to the lost one must not have been strong. Multiple studies have found this to be inaccurate (Bonanno, 2009; Carr, Nesse, & Wortman, 2006; Konigsberg, 2011; Wortman & Silver, 1989, 2001). Indeed, a significant group of bereaved people actually become worse if emotional ventilation is pushed upon them; this subgroup can do quite well without any professional inter- vention. We must thus attend to the particular experience of each griever and recognize that many will heal without professional help.

The Transition to Postmodern Grief Theory

Some theorists in the Foucauldian tradition critique grief theorists and coun- selors for “disciplining grief” (Foote & Frank, 1999). Grief counseling is viewed as a way of pathologizing grief in ways that allow therapeutic intervention to produce conformity to societal norms. This is “diffuse power” not overt coer- cion. It is a form of self-care and self-improvement (something Foucault calls “technologies of the self” [Martin, Gutman, & Hutton, 1988]) that functions to contain grief within a therapeutic context.

They comment:

Grief, like death itself, is undisciplined, risky, wild. That society seeks to discipline grief, as part of its policing of the border between life and death, is predictable, and it is equally predictable that modern soci- ety would medicalize grief as the means of policing. (Foote & Frank, 1999, p. 170)

They also critique focusing on only the psychological aspects of grief, asserting that this deflects attention from the social and physical consequences of grief and mourning.

Walter (2000) too has recognized how policing grief can be destructive. He traces the evolution of policing grief from the Victorian era’s enforcement of contained, formalized and time limited grieving to a current expectation of expressive grief with a tendency toward medicalization of the grief process. He asserts that mutual help support groups have evolved as a form of resis- tance to policing and medicalization, while themselves evolving norms that contain an expectation of grieving like other group members.

Postmodern theories of grief grow from a social constructionist under- standing of the world (Berger & Luckmann, 1967) which asserts that humans construct their understanding of the world in ways that they then see as self- evident and true. This “true-ness” is deeply felt, yet differs from how others will construct their own truths. For example, in some traditions (Jewish and Amish) the dead are buried with little fanfare and usually within a day, whereas in others (Irish) the dead are “waked” with viewings and parties before burial takes place. Members of each group believe their traditions to be “natural” and others to be odd. Postmodern understandings hold that there are many truths, each created within historically specific social milieu. This approach is embraced by grief theorists and therapists (Neimeyer, Klass, & Dennis, 2014) who assert that “grieving [i]s a situated interpretive and communicative

1 Introduction 17

activity” (p. 496) during which grievers work to make meaning of their loved one’s life, to find their current place in a changed social context, and to per- form (or resist performing) grief in ways consistent with the relevant cultural context.

The narrative tradition of therapy (White & Epston, 1990) grew from social constructionist and postmodern understandings and is predicated on each individual developing his or her own story with the help of the therapist. A narrative project, making meaning of the deceased’s life, death, and relation- ships is viewed as critical to processing grief (Neimeyer, 2001). Along with the evolution of this meaning-making approach to grief work, grief theorists and practitioners began to question classic models and templates for grief. Social constructionism and postmodernism more generally imply that no individ- ual’s grief must follow a certain pre-set path; further, decathexis, resolution and/or acceptance should not be envisioned as desired outcomes for all griev- ers. This allowed Klass, Silverman, and Nickman (1996) to theorize what many mourners had been saying all along: the end of active grieving does not have to entail a detachment from the deceased. Most often, it entails continuing bonds, which change in quality. Foote and Frank (1999) assert that postmod- ern meaning-making approaches provide a basis for resistance to disciplin- ing grief—at least until those strategies too are institutionalized and become a form of policing grief.

Another construct often used in the context of grief, and which must be challenged for many reasons, is the notion of “closure.” In connection with the stage of “acceptance” that Kübler-Ross proposed, many have come to believe that closure is necessary for grievers to heal. Even if one sets aside the idea that acceptance is the desired outcome of grief, the construct of closure is knotty when explored through a sociological lens (Berns, 2011). “Closure” arose in the popular narrative during the 1990s and developed multiple meanings, all of which reflected the hope of grievers to be relieved of pain and suffering after a loss. Perhaps most insidious (if predictable), closure came to justify myriad commercial endeavors from “burials” in space to “diamonds” made of cremains (Berns, 2011). Berns notes that the word “closure” is used to mean closing a chapter, remembering, forgetting, getting even, knowing, confess- ing, and forgiving; such broad usage allows many services and products to be sold—and laws to be made—in pursuit of closure. Yet as a concept, closure is as slippery and suspect as most other “natural” outcomes of grief. Just as Klass (2013) recently cautioned not to assume all grief leads to growth (2013), we emphasize that not all loss experiences (nor even most) will or should lead to closure.

The following postmodern, conceptual approaches to grief work allow grievers and supporters to tailor their interventions, avoid thrusting uniform models on grievers, and support therapeutic or informal healing strategies without insisting on closure or acceptance.

Dual Process model

A deceptively simple grief theory came from the work of Stroebe and Schut (1999): their theory met the criteria for a postmodern grief theory that is not

Grief and Loss Across the Lifespan18

prescriptive and can be tailored to individual grievers. Their theory drew from Bowlby’s ideas (1998) about disorganization and reorganization. Although Bowlby conceptualized these as discrete stages, Stroebe and Schut (1999, 2010) envisioned ongoing oscillation between loss orientation (LO) and restoration orientation (RO). This differs from Bowlby’s stages of disorganization and reorganization in that the bereaved person has times of mainly experiencing the grief actively and focusing on the loss (LO), and others of (mainly) mov- ing toward building a new life. These usually alloyed orientations both have value. One allows for distraction and restoration time that frees the mourner to move into new roles and activities while the other allows processing time for the loss. Both are necessary.

Notably, rumination (a typical aspect of early LO) is often portrayed as the sine qua non of grief work (Bonanno, 2009), yet Stroebe et al. (2007) devel- oped the DPM theory to show how excessive rumination is actually a mode of avoidance, not accomplishing the work of LO or RO (although they frame this differently within their explication of rumination and its problematic nature in grief over time [Stroebe et al., 2007]). They identify excessive rumination, particularly focused on one’s own emotions and a refusal to believe one can recover, as antithetical to healing and a form of avoidance that is not part of the fruitful work that occurs in LO or RO.

Stroebe and Schut (2010) built on their original model to show how it can be used as both an assessment tool (How much of the bereaved’s time is spent in each orientation? How does the proportion gradually change toward more RO?) and also as an intervention (therapeutic guidance can help griev- ers move into whichever orientation the griever might be avoiding). Different developmental stages may also affect this process as it seems that children spend more time in RO (particularly utilizing distraction) and seem to oscillate naturally between orientations more quickly. Research is necessary to explore whether these impressions are generalizable and useful.

In a volume of OMEGA devoted to empirical examination of the DPM, Carr (2010) synthesized the studies and observed that some did not find the expected response to DPM interventions (e.g., those involved in DPM groups fared no better than those involved in typical loss oriented support groups). She speculates that grief groups may meet the more universal needs of LO, but that RO requires new skills that are more individual. She also raises Shear’s (2010) hypothesis that a certain amount of avoidance of active grief is adap- tive; however, predicting optimal times for avoidance is elusive. Carr (2010) concludes that the optimal balance between RO and LO remains relatively unresolved.

Revision of the assumptive world also is implicit within the DPM. As discussed above, the assumptive world is the set of fundamental beliefs car- ried as schema, often without awareness until they are violated. The death of a loved one jolts the belief that the world is a fair and just place, violates the belief that one will not have to live without the loved one, and challenges the griever to revise and relearn assumptions about the way the world works. This activity occurs in RO as grievers work to understand what their assumptions were and to restore a sense of safety, predictability, and continuity by adopting new assumptions and defenses against fears evoked by the loss itself and the associated loss of the assumptive world. These new assumptions indicate that

1 Introduction 19

one has found some meaning in the call to move forward into life. Attig has clarified how “relearning the world” differs from revision of the assumptive world (Janhoff-Bulman, 1992) in that the assumptions revised are all cognitive, whereas relearning the world requires relearning a sense of safety and belong- ing along with a new way of negotiating life (Attig, 2015).

meaning-making and Grief

Although Viktor Frankl is most associated with Man’s Search for Meaning (1984) and White and Epston (1990) with meaning-making and story-telling via narrative therapies, Robert Neimeyer has most notably applied these concepts to grief theory and intervention. He traces this back to

Kant (1787/1965) who emphasized that the mind actively structures experience according to its own principles and procedures. One con- temporary extension of the argument is that narrative—the distinctly human penchant for storytelling—represents one such ordering scheme (Bruner, 1986) . . . Significant loss—whether of cherished persons, places, projects, or possessions—presents a challenge to one’s sense of narrative coherence as well as to the sense of identity for which they were an important source of validation. . . . Bereaved people often seek safe contexts in which they can tell (and retell) their stories of loss, hop- ing that therapists can bear to hear what others cannot, validating their pain as real without resorting to simple reassurance. Ultimately, they search for ways of assimilating the multiple meanings of loss into the overarching story of their lives, an effort that professionals can support through careful listening, guided reflection, and a variety of narrative means for fostering fresh perspectives on their losses for themselves and others. (Neimeyer, 1998, 2001)

This is quoted at length because Neimeyer’s (2001) explanation fits with our view that understanding grief and working with people in grief therapy is a mutual project. Grief therapy is a respectful process of hearing and witnessing the stories people tell of their lives and their losses, questioning them in ways that allow them to open themselves to other perspectives while also leaving room for them to reject those possibilities. At its best, grief work encourages mourners as they construct and reconstruct stories of meaning that enable them to move into their new lives and their new assumptive worlds in the physical absence of the lost entity.

It is important that clinicians working with grieving people recognize that their stories will take multiple forms and the task of the therapist is not to force adherence to a “true” or “real” one. Instead, we are to help the client create their own coherent story while illuminating blind spots. New under- standings can enable a story that fits the client’s evolving worldview in ever- more useful and function-promoting ways that create meaning in the griever’s life. This is a relational project involving a willingness on the part of the thera- pist to engage with the client in an authentic and caring manner, exhibiting genuine curiosity about the way the client is telling the story. Successful grief therapists convey realistic hope that this process will help the client return to full engagement with life and loves.

Grief and Loss Across the Lifespan20

Early in the development of grief theories of meaning-making, Davis, Wortman, Lehman, and Silver (2000) questioned whether it could be assumed that most bereaved individuals find meaning in loss. In their sample, only about half reported finding meaning in the loss. They suggested that grief workers might intervene more effectively by helping the bereaved to under- stand (a) the risks of staying stuck in their grief, (b) how to use the therapist as a “container” during the early phases of intense grief, (c) the benefits of using rituals and traditions that have meaning and comfort for them, (d) any ruminations/obsessions and how to move them into a flowing narrative rather than a recurrent thought, and (e) how to set attainable goals that allow grievers to make choices and sense accomplishment. Neimeyer, Baldwin, and Gillies (2006) have continued to build on these and other suggestions for inter- ventions to assist meaning-making while incorporating continuing bonds and other postmodern concepts. Even more promising, these ideas are expanding into related fields like genetic counseling (Douglas, 2014) in ways that may allow more people struggling with loss to receive the support they need (in this case, the diagnosis of a child with a genetic disorder).

Continuing Bonds and Grief

A pivotal understanding in contemporary grief theory came when Klass et al. (1996) each examined data from their disparate research populations and real- ized that “Rather than letting go, they [the bereaved] seemed to be continuing the relationship” (1996, xviii). They challenged the notion that disengaging from the deceased or lost one is the goal and illuminated the concept that “the bereaved remain involved and connected to the deceased, and . . . actively con- struct an inner representation of the deceased that is part of the normal griev- ing process” (p. 16). In the Introduction to their important book they noted:

When we discuss the nature of the resolution of grief, we are at the core of the most basic questions about what it is to be human, for the meaning of the resolution of grief is tied to the meaning of our bonds with sig- nificant people in our lives, the meaning of our membership in family and community, and the meaning we ascribe to our individual lives in the face of absolute proof of our own mortality. The book challenges the idea that the purpose of grief is to sever the bonds with the deceased in order for the survivor to be free to make new attachments and to con- struct a new identity. . . . [T]he constant message of these contributions is that the resolution of grief involves continuing bonds that survivors maintain with the deceased and that these continuing bonds can be a healthy part of the survivor’s on-going life. (Klass et al., 1996, p. 22)

Again, this is quoted at length because it clearly defines a major shift in how grief theorists and therapists approach the nature and goals of grief. Aside from the implication that as with meaning-making, each individual will have a highly personal outcome to their grief, this also carries a caution. Just as bereaved people were “policed” into nonexpression of their grief (or more recently into full expression even when this did not fit their needs), we must remain cognizant that while some grievers may find comfort in continuing bonds, others will find them unnecessary.

1 Introduction 21

Recent work on grief after traumatic loss differentiated types of continuing bonds. Field and Filanosky (2010) indicated that externalized con- tinuing bonds (hallucinating the deceased loved one; hearing voices of the deceased) are associated with poorer adjustment over time. Internalized con- tinuing bonds (having an internal sense of the deceased still comforting and caring) seemed protective (from complications of grief) and comforting.

Cultural understandings are important here. Mexican “Day of the Dead” celebrations and Buddhist worship at shrines of deceased loved ones are only two of many rituals that foster continued bonds. Japanese ancestor worship (Shinto and Buddhist) also maintains continuing bonds with the deceased (Valentine, 2010). Individualized assessment of the client, discussion of cul- tural aspects of the grief process and customs, the intuitive and respectful stance of the therapist, and the awareness of the wide range of ways people move through and process their grief are imperative for sensitive, competent grief work.

Disenfranchised Grief

Doka (1989, 2002) coined the term disenfranchised grief to conceptual- ize grief that is not recognized, validated, or supported in the mourner ’s social world. Essentially, the concept means that the grief does not meet the norms of grief in the griever ’s culture. Hochschild (1979, 1983) has referred to norms that guide “appropriate” emotions in a given situation as “feeling rules.” Disenfranchised grief comes as a result of breaking the feeling rules, or of living in a time when feeling rules are not established or are discrepant (McCoyd, 2009a). The lack of norms leaves the griever uncertain about being “allowed” to feel sad about a loss not recognized by social peers. Further, it may leave grievers wondering if they are even “allowed” to call their experi- ence a loss. Doka (2002) defines five categories of disenfranchised grief: (a) grief where the relationship is not recognized, such as gay and lesbian rela- tionships, extra marital relationships and other relationships that lack social sanction; (b) grief where the loss is not acknowledged by societal norms as a “legitimate” loss, as when abortion, relinquishing a child for adoption, pet loss, and other losses are not viewed as worthy of sympathy; (c) grief where the griever is excluded as is often the case for individuals who are children, who are aged, or who are developmentally disabled and are (inaccurately) not believed to experience grief; (d) grief where the circumstances of death cause stigma or embarrassment, such as when a person dies of AIDS, alco- holism, crime, or in other ways that are viewed as the result of moral failures; and (e) grief expressed in nonsocially sanctioned ways, as when a griever is deemed to be either too expressive, or not expressive enough, reminiscent of the policing of grief discussed above.

The nature of disenfranchised grief means that grieving individuals do not receive the social support and degree of sympathy from others that they desire to enable processing grief and moving on in healthy ways. The very core of grief (for most) is to actively process the pain. Yet, many have that pain exacerbated by social isolation or rejection with little support (if any). Many of the losses discussed in the following chapters fall into some of these

Grief and Loss Across the Lifespan22

categories, particularly losses that are not recognized as worthy of support by others. In these cases, the mere validation of the event as a loss and normaliz- ing the grief response can allow the griever to move through the loss response without the complications that may occur otherwise.

Recently, Robson and Walter (2012) challenged the notion of disenfran- chised loss as not reflecting the hierarchical nature of loss found in most situations (particularly as it relates to who is considered entitled to sup- port and sympathy). They noted that the language of disenfranchisement implies a binary nature: One has freedom and legitimacy as a voting citizen or one does not. They developed a tool for measuring the levels of grief allowed those in different relationships to the deceased (e.g., the mother, the husband) and found substantial agreement that this is a hierarchical set of relationships. They observed: “Our contention therefore is that disen- franchisement is not a norm, but a feeling experienced by mourners whose personal grief exceeds their position in the hierarchy either as generally perceived or as perceived by one or more significant condolers” (Robson & Walter, 2012, p. 109). They noted that clinicians tend to work with grievers whose grief outstrips the sympathy allotted to them. The clinicians may assume their work is to enfranchise all grief, an assumption Robson and Walter question. They note that the language needed to research these areas involves norms, legitimacy, and validation—language that most grief work practitioners have likely used anyway. We will often talk about validating the grief of those whose loss is viewed as “disenfranchised.” Validating grievers’ sense of loss is likely to continue to evolve as more nuanced expressions of grief, relationship to the lost entity/person, and types of loss remain the focus of research within varied social contexts. To emphasize the point yet again: Grief is social.

Ambiguous and Nonfinite (or Chronic) Grief

Ambiguous loss (Boss, 1999), also called “frozen grief,” is difficult to process because of the uncertain definition of who or what is lost. In ambiguous loss, the lost entity is

■ Physically present but psychologically absent—for instance, a loved one with Alzheimer’s or head trauma/brain injury or

■ Physically absent but psychologically present—such as when someone is kidnapped or missing in action during a war.

It is unclear how to adjust to such losses. Without a death (the first case), it seems premature and even cruel to grieve as if there has been one; in the second case, grieving would remove the hope of return. Boss points to the following difficulties with ambiguous loss:

■ Adjustment to the loss cannot occur as it is uncertain what one is supposed to adjust to.

■ Rituals are not available and there are few social supports. ■ The irrationality of life is on display. It is hard to feel that there is a rational world when nothing seems clear or rational; it is seemingly unending. The

1 Introduction 23

uncertainty drags out and there is little ability for resolution and no end in sight.

These losses also confuse support people, who are perplexed about whether to express sympathy or maintain a stolid sense of normalcy and hope. Because the loss has not fully happened (yet), people lack social support, yet they struggle with the fact that their loved one is slipping away bit by bit. Boss reports a case where the mother of a veteran of the Iraq war with significant head trauma struggles with the fact that her son is alive, yet certainly not the same son she raised and loved (Boss, Roos, & Harris, 2011). Learning to live with a life that has become incomprehensible (unpredictable and utterly different from what one planned) is a key to managing ambiguous loss: as the loss is relational, the treatment must be relational (Boss et al., 2011, p. 165).

This may be why peer support groups seem so efficacious with grievers such as these. Group members share a similar experience of confusing loss over a protracted period. Although similar loss does not guarantee similar response, the group can discuss obstacles to social recognition and strategies for coping with the lack of support.

A similar type of grief, chronic sorrow (sometimes referred to as nonfinite grief), reflects the living nature of the loss (as in ambiguous grief). This type of grief is characteristic of parents whose children are born with (or contract) dis- orders that affect their development and ability to participate in typical soci- ety. This grief tends to be “permanent, periodic, and progressive in nature” (Boss et al., 2011, p. 165) and reflects the losses parents experience when they see other children accomplishing goals their children have not or cannot. Riesz (2004) describes her experience of mothering a 30-year-old daughter with developmental delays and details the experience of nonfinite loss. Boss et al. (2011) suggest a form of intervention that may provide guidance for many forms of ambiguous and nonfinite grief.

ISSUES OF INTERVENTION

Grief theorists tend to identify phases (and associated tasks) through which the mourner must move in order to heal. Newer theories avoid the prescrip- tive nature of many of the earlier ones, yet the onus remains on the bereaved to move through some process. Interestingly students and others who want to assist those who are grieving, often ask “What can I do?” not “What should the bereaved do?” Asking what we can do is actually the much more important question.

Therapist Activity in Intervening With Grief

Lloyd (2002) provides a general intervention strategy for customary grief after death loss. The practitioner is to (a) explore attitudes toward death and dying from psychological, sociological, and philosophical/religious perspectives; (b) explore and analyze the bereaved’s constructions of life; and (c) explore the processes of adjustment to the world without the lost entity. Within each area for exploration, attention is to be paid to how the bereaved is redefining roles,

Grief and Loss Across the Lifespan24

rebuilding identities, negotiating transitions, surviving trauma, and maintain- ing morale.

Boss, Roos, and Harris (2011) suggest intervention to assist those with ambiguous and nonfinite loss. The clinician is to: (a) name and validate the loss; (b) help the client find meaning in their new role; (c) address trauma when it is present; (d) temper mastery—by which they mean tempering the mourner’s expectations to have control of, or overcome the situation; (e) help the griever reconstruct identity; (d) normalize ambivalence— recognizing that having both love and hate for the person who is changed from their previous persona is normal; (e) revise attachment; (f) discover new hope; and (g) identify resources for support.

Walter (2003), in her research with people adapting after the loss of a life partner, also emphasized the issue of validation. She recognized that gay and lesbian couples often had little recognition and validation of the loss of their life partner. Mourning a disenfranchised loss, and often denied access to the usual rituals of support after death, such an individual benefits from having someone with whom to reflect on how his or her identity is changing and has changed. Further, Walter notes the “two incompatible urges” (p. 245) of want- ing to cling to the pain of the loss, but also to move on to the new life ahead. Seldom do people have social contacts ready and able to provide the nondirec- tive approach necessary to accompany bereaved individuals as they review these opposing urges and reflect upon prior experiences. Grief counselors are called upon to patiently be with and witness the pain and possible growth that comes from loss.

mindfulness as an Intervention for Grief

Mindfulness has become widely known and accepted as a practice for becom- ing more attuned to one’s own internal sensations, emotions, and responses, as well as to tune in with others. Starting as mindfulness meditation, pop- ularized in Jon Kabat-Zinn’s (1982, 1990) work, mindfulness has many new iterations that apply to practitioner’s own practices as well as to the work we do with grievers. Cacciatore and Flint (2012) synthesized much of this move- ment in their ATTEND model of bereavement care, making the point that it is for use by the practitioner/therapist; it is for use within the therapeutic relationship; and it is for the client’s use. The pillars of the ATTEND model are: attunement, trust, therapeutic touch, egalitarianism, nuance, and death education. Attunement comes first and is likely the integrating principle of mindfulness. Attunement requires attending to oneself and others’ well-being and being. It entails empathy, responsiveness, intentional attentiveness, and allowing each person to observe and accept pain and suffering as well as posi- tive emotions. Dan Siegel puts this at the heart of being a mindful therapist (2010b) and notes that “presence” is a sense of being open to the other (the client) while attunement requires presence but also includes “focused atten- tion and clear perception” (Siegel, 2010b, p. 35).

Cacciatore and Flint (2012) define trust as compassionate communica- tion that allows the client to know there is safety and care within the relation- ship. The second T in ATTEND is therapeutic touch, which they acknowledge is controversial. Nevertheless, therapeutic touch conveys caring with a gentle

1 Introduction 25

touch on the hand or shoulder, or a willingness to sit side by side as a griever cries. Egalitarianism focuses on the idea that the mindful relationship is humble and takes place between equals in a collaborative and safe relation- ship. “Nuance” reflects all the unique aspects of the client and the practitioner as they come together to work on the client’s challenges; they note that nuance rejects assumptions and one-size-fits-all answers and means that all work together is tailor-made within the mindful relationship. Death educa- tion encompasses both psychoeducation to assist the dying and the grieving to know what to expect of the dying or grieving process. It demands that the practitioner remain up-to-date on new aspects of death education and counseling.

Similarly, the acronym SIFT (Epstein, Siegel, & Silberman, 2008) helps practitioners be mindful within the therapeutic relationship. SIFT refers to how the practitioner must review sensations, images, feelings, and thoughts. By doing so, the practitioner gets in tune with concerns about how the client is feeling, what responses the practitioner is having that may create barriers to staying attuned, and allows the practitioner to stay fully engaged with the person with whom they are working. In psychodynamic education, we refer to this as attending to our countertransference so as to avoid “bringing our own stuff” into the relationship in harmful ways. Siegel also uses the acronym COAL to reflect the importance of curiosity, openness, acceptance, and love, which infuse the mindful therapeutic relationship. Regardless of which acro- nym frames the work one does with grievers, mindfulness requires intense connection and attunement with one’s client and with oneself in the service of the client. Such intense work can only be done well when the practitioner attends to his or her own self-care. Whether practicing mindfulness exercises on one’s own, engaging in contemplative practices, or finding routines that help one stay healthy, it is imperative that practitioners be aware of their own well-being and responses. Throughout this text, we will describe varied mind- fulness and other practices for use with clients. Here, we urge our readers to become familiar with mindfulness practices and to utilize them day to day. Kabat-Zinn’s Full Catastrophe Living (1990) is a great place to start and many of Siegel’s works involve mindfulness practices as well (2010a; 2010b).

A FINAL WORD ABOUT GRIEF WORk

In 1991, Stroebe & Stroebe asked the question “Does ‘Grief Work’ Work?” Their answer was “maybe.” Findings that widowers who avoided emotional expres- sion had worse outcomes than those who did not suggested tepid support for grief work; however, widows did not exhibit this same association. This led the authors to suggest that “the view ‘everyone needs to do grief work’ is an oversimplification” (p. 481). Indeed, Bonanno, Wortman and Nesse (2004) found that the majority of widows and widowers did well after spousal death (see “Older Adults” chapter for more detail). In short, most feel pain, but are able to cope, even after major losses.

Here, we raised the concern that classic theories may create a tendency toward policing grief. We also raised questions about the efficacy of grief work. Nevertheless, reflective practitioners must avoid the paralysis that can

Grief and Loss Across the Lifespan26

result from giving so much weight to these concerns that we neglect to provide support for those who ask for our assistance. Remaining open, mindful, and reflective about new understandings in grief theory, while also using empirical data derived from one’s interaction with clients will guide us toward mean- ingful work with grievers. Whether the grievers perceive the work to be use- ful (or not) will allow us to modify our work to fit that particular griever’s developmental and mourning needs. These are requirements of ethical and sensitive practice in the world of grief support.

DISCUSSION QUESTIONS

1. What rituals do you typically engage in after a death in your family and how do you believe this helps or hurts the mourners?

2. Consider disenfranchised losses you have experienced in your lifetime. If each one was actively mourned, how might that change the way you feel about those losses?

3. How would you approach a client who comes in to a first session and says “My spouse just died and I know I’m in anger right now but I want to get to acceptance.”

4. In light of the tepid support for grief work for all losses, how do you think most death losses of close people should optimally be managed?

27

TWO

Perinatal Attachment and Loss

Samantha is a young physician who wanted to complete her medical residency before trying to start a family. She was concerned when she had not gotten pregnant after “a year of trying!” Yet once she was urged to have sex with her husband every other day for a month, she got pregnant right away and was jubilant. Her joy turned to fear after the anatomy ultrasound at 17 weeks gestation indicated that her fetus* had a skeletal disorder which would eventually be diagnosed as osteogenesis imperfecta (OI), a disorder where the bones break very easily. Indeed, the fetus she had come to call “Sweetpea” already had a broken femur. After lots of soul-searching, discussion with her husband, and exploration of the science of cure and care for individuals with OI, she and her husband elected to interrupt (terminate) the pregnancy. She knew that she and her husband’s lives would be “turned upside down” if they had the baby, and she also wanted to spare the baby the pain and suffering that individuals with OI experience.

Samantha was distraught when some friends quit talking with her because she “aborted her baby.” Meanwhile, she was grieving the baby she had loved. She had elected to have labor induced and to hold Sweetpea as she died. This both comforted and traumatized her. A year and a half later, she delivered a healthy little boy. She will always remember Sweetpea and she finds it very unfair that women who have to make such difficult decisions are stigmatized when all they are trying to do is spare their child pain. She remembers Sweetpea every year on anniversaries of her birth/ death and due dates.

OBJECTIVES

After reading this chapter the reader will be able to:

■ Understand the prenatal and postpartum attachment process as a frame for the way loss is experienced during and soon after pregnancy.

■ Describe the ways that biological changes in pregnancy impact attachment and the subsequent experience of loss.

■ Think about the role of technology in mediating perinatal attachment, diag- nosis, and loss.

■ Analyze how social norms define perinatal loss and constrain options and sympathy after such losses.

* Throughout this chapter we use the medically correct word fetus even though we recognize that most pregnant women would use the word “baby,” which is what we would encourage clinicians to use if that is the woman’s preferred language.

Grief and Loss Across the Lifespan28

DEVELOPMENTAL ASPECTS OF PREGNANCY

The beginning of a pregnancy is a time of anticipation, uncertainty, and hope. Samantha’s experience highlights how emotionally charged the expe- rience of pregnancy and childbirth can be. Success in achieving pregnancy is often complicated by older maternal age, which leads to fatigue (mean- ing that attempts at pregnancy are limited), lowered fertility, and ultimately the anxiety about getting pregnant that can cause difficulties in becoming pregnant. Once a woman is pregnant, the attachment to the dreamed-of baby grows rapidly, yet technology from ultrasound through genetic screening and testing means that difficult decisions may be part of many women’s experi- ence of pregnancy. Here, we will consider the development of the prenatal attachment in a typical pregnancy, focusing primarily on the mother as the pregnancy occurs in her body. This, of course, differs for those who adopt a child, use a gestational surrogate, or otherwise create their family in less typical ways.

The development of an emotional bond between the mother and the growing fetus is a primary task of pregnancy. Nearly all credible behavioral theory focuses on the relationship between the infant and the mother or primary care giver as the formative force behind most relational behavior. Relatively recently, research and theory exploring how that bond develops prior to the birth (which Bowlby had identified as the beginning of attach- ment) has exploded (Brandon, Pitts, Denton, Stringer, & Evans, 2011).

Here we will explicate what is known about the biological, psychological, and social aspects of the formation of the bond with a fetus during pregnancy and what is lost when a pregnancy ends prior to birth. The mother’s perspec- tive on that bond, including the role of the mother’s biopsychosocial context during pregnancy and the ways it sets the stage for the beginning attachment once a baby is born, is critical to how the mutual attachment process begins once the baby is born. Obviously, parental attachment to the fetus frames the experience of perinatal loss.

Biological Developmental Context of Pregnancy

The beginning of pregnancy causes radical changes in a woman’s body. Instead of moving through a roughly 28-day hormonal cycle to which she has become accustomed since adolescence, she is suspended in a phase of her cycle during which high levels of estrogen and especially progesterone are secreted. Other hormones including human chorionic gonadotropin (HCG) are secreted in ever increasing amounts. Aside from the physical effects of breast tenderness, bloating and nausea that accompany these hormones, emotional effects such as increased irritability, labile moods, and an increased sense of vulnerability are believed to be related to these hormones as well. Recent research suggests that pregnancy-related nausea may actually be associated with both HCG and progesterone, priming women to have aversions to the smells, flavors, and textures of foods and other substances that are unhealthy during pregnancy (Hahn-Holbrook, Holbrook, & Hanselton, 2012).

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Physical changes involved in pregnancy clearly influence the woman’s emotional life, and can have implications for attachment to the fetus. On the one hand, these changes provide palpable evidence of the fetus’s presence in her body; on the other hand, they can lead to feelings of less control over her body. These body changes can inspire resentment and blame of the fetus if the changes are overwhelming or unwelcome. In short, the physical changes of pregnancy can be a reassuring reminder of the fetus’s presence or a burden to bear. How a mother views these physical changes will likely have a strong influence on her emotional state generally, and her attachment to the fetus spe- cifically. Likewise, she (and likely her partner) may be creating “representa- tions” of the fetus (ideas about the characteristics, motivations, and growth of the fetus—e.g., “he’s such an active scamp!”) which seem to set the foundation for the development of secure or insecure attachments after birth (Ammaniti, Tambelli, & Odorisio, 2013).

As the fetus grows, it makes its presence increasingly known, first by gentle brushings (quickening) often experienced as “butterfly wings inside,” but progressing to large movements in confined spaces as the fetus moves and tries to stretch in the latter stages of pregnancy. This corresponds with the woman’s body getting larger, a development often connected to her sense of attractiveness (or lack thereof). A new center of gravity and increased weight alter body dynamics so as to increase the sense and actual- ity of vulnerability. A sense of being a stranger in her own body may lead to high levels of psychological discomfort, particularly for women whose self-image is strongly tied to physical appearance, or for women who have great need for control. These physical effects may impact the way a woman perceives her growing fetus.

Progesterone (a primary hormone of pregnancy) is believed to help prime “nesting” behavior—the tendency to create a safe place to house the newborn—and obsessive nesting may be a normal aspect of late preg- nancy (Feygin, Swain, & Leckman, 2006). As prolactin is secreted along with oxytocin at the time of birth, the reward system of the brain is stimu- lated, fear is buffered, and women have increased affiliative motivations (Hahn-Holbrook et al., 2012), meaning they generally want to remain close to the newborn as well as friends and family. Interestingly, rats raised to be addicted to cocaine, when primed with their newborn pups to promote oxy- tocin release, actually prefer closeness to their pups over cocaine (Mattson, Williams, Rosenblatt, & Morrell, 2003), indicating the strong level of reward new mothers get from physical closeness with their newborns. In the reading by Kudeva at the close of this chapter, the hospital protocols that separate new mothers from their newborns are seen to interfere with this bonding and to leave some mothers bereft.

Sleep problems bridge physical and psychological aspects of pregnancy. The aches and pains associated with a growing uterus combine with frequent urination and hormonal influences to deprive pregnant women of easy sleep, and loss of sleep is consequential. Recent research ties sleep disturbance to the depressive symptoms pregnant women often experience and they urge obste- tricians and others to attend to women’s sleep and intervene when possible (Kamysheva, Skouteris, Wertheim, Paxton, & Milgrom, 2010).

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Many women are fascinated by the development of the fetus as it goes from a recently fertilized egg to a newly born baby (neonate). Many websites help parents track growth, from the hipster pregnancy site “The Bump” which tracks embryo and fetus growth by food size (starting out as a poppy seed) (http://pregnant.thebump.com/pregnancy/pregnancy-tools/articles/ how-big-is-baby.aspx), through Baby Centre which gives details of devel- opment at each week of gestation (www.babycentre.co.uk). Envisioning the growing fetus allows women and their partners to promote prenatal bonding and strengthen attachment, but it may also make the woman more susceptible to intensified grief if she experiences a loss.

Psychological Aspects of Pregnancy

The complex psychology of pregnancy is grounded in the development (or not) of a relationship with the developing baby, both the physical fetus grow- ing in the uterus and the image of the baby developing in the mother’s (and others’) mind(s). Early psychoanalytic and psychodynamic understandings of the psychology of pregnancy were rooted in the symbolic nature of the fetus. Pines (1993) comments:

Freud, a man of his time, believed that pregnancy and birth gratified every woman’s basic wish. The gift of a child would partially compen- sate for the unfulfillable wish for a penis. My analytic experience does not confirm this view. . . . I shall discuss the revival in pregnancy of infantile fantasies about herself as the intrauterine foetus in her moth- er’s body which are activated by her narcissistic identification with the foetus now situated inside her body. (p. 97)

This psychoanalytic symbolism of the fetus as father’s penis or self-as- fetus has been viewed with suspicion over time (due to lack of evidence) and few now accept the notion that pregnancy fulfills women’s allegedly deter- ministic longings for birth.

To define phases of, and typologize approaches to, pregnancy, Raphael- Leff (2005) combined psychoanalytic understandings with ideas about the permeability of body boundaries in pregnancy and the longings for infan- tile security with the seeming invasion and violence of birth. She defines three phases of pregnancy. In the first, the mother’s thoughts and emotions are defined by a kind of “psychological slippage” (2005, p. 62) where the mother at times feels consumed by the changes of pregnancy and at others forgets that she is pregnant. She is often focused on emotional nurturance and nurtur- ance by food during this time. Psychoanalytic understandings of this phase focus on the reactivation of the mother’s emotional past, particularly the ways she was mothered (or not) and the fantasies she may have about her growing pregnancy. Raphael-Leff posits that the second phase of pregnancy happens after quickening (feeling fetal movements) and modifies the sense of fusion to realizing that the fetus moves independent of her own movements. Raphael- Leff views this as a time when women start to imagine the personality of the

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fetus and to have a sense of “two-ness.” By phase three, the fetus has achieved viability and the birth experience looms large; negotiating with her care pro- vider becomes a focus to ensure the health and safety of the baby-to-be.

Raphael-Leff (2005) asserts that a woman’s relationship with her fetus and her care providers falls into three categories that frame the psychology of pregnant women. The “Facilitators” are delighted to be pregnant and gestating; they experience fusion in Phase 1, communion in Phase 2, and relinquishment in Phase 3. “Regulators” tend to see pregnancy as a means to an end and try to keep the mundane realities of pregnancy as far from daily experience as possible. Phase 1 is a time of heightened self-control, attempting to avoid being overcome by physical effects or sentimentality; Phase 2 is also defined by self-control and an awareness of the fetus as a kind of parasite; and Phase 3 is characterized by detachment and the desire to get through the birth. The women classified as “Reciprocaters” blend the two types and experience some ambivalence in Phase 1, are able to tolerate the uncertainty of pregnancy in Phase 2, and ultimately are able to take a wait and see approach during the third phase, which they approach with preparation.

Bowlby, a founder of attachment theory, considers patterns of attachment as indicative of how an individual will form relationships in adulthood.

Attachment behavior, like other forms of instinctive behavior, is medi- ated by behavioral systems which early in development become goal- directed. . . . The goal of attachment behavior is to maintain certain degrees of proximity to, or of communication with, the discriminated attachment figure(s). (Bowlby, 1998, pp. 39–40)

Bowlby’s focus is on the relationship between born-child and the mother and how that relationship defines future attachment patterns of the grow- ing child. Nevertheless, the clear implication is that mothers, driven by both species-survival forces and their own attachment patterns, will attach to new- borns quickly. This implies that some process went on before the birth that primed the woman for the attachment. Recent research focuses on how the concordance or discordance between mothers’ prenatal representation of their baby-to-be and the reality of that baby’s attachment style after birth affect infant behaviors (exploration) and maternal depression (Huth-Bocks, Theran, Levendosky, & Bogat, 2011).

Depression and anxiety symptoms are common during typical preg- nancy (Glover, 2014) and even more likely during high-risk or medically com- plicated pregnancies (White, McCorry, Scott-Heyes, Dempster, & Manderson, 2008). Robust, recent research findings show that preterm birth and low birth weight are highly correlated with anxiety in pregnancy (Ding et al., 2014) and that depressive symptoms and other stressors result in poor pregnancy outcomes and poorer maternal-infant attachment (Glover, 2014; White et al., 2008). Levels of stress are particularly high when a mother has had a prior pregnancy loss (Gaudet, 2010) and women who have experienced pregnancy loss often attempt to avoid early attachment as a way to protect themselves emotionally (Cote-Arsenault & Donato, 2011). Ironically, the more women

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worry about the health and well-being of themselves and their fetuses, the more likely they will have problems. Mindfulness, yoga, and other medita- tion techniques assist pregnant women in reducing stress (Beddoe, Paul Yang, Kennedy, Weiss, & Lee, 2009) (see also the websites www.noetic .org/education/self-study/mindful-motherhood-course and www.mindful .org/mindful-magazine/mindful-pregnancy).

Social Aspects of Pregnancy

Societal messages about pregnancy and the reinforcement of various behaviors during a woman’s youth such as playing house and babysitting can influence her feelings and behavior regarding the pregnancy. The lessons learned are culturally derived and generally fit that woman’s ethnic, racial, religious, and generational contexts. In some countries, women avoid medical care because it is believed merely to cause problems (and indeed, in countries where women are lacerated or flogged during labor to scare away bad sprits, or told to confess if they are having difficult labors, this suspicion may make sense) (Evans, 2013). Yet even in Westernized nations, cultural heritage and religion will influence expectations, attitudes and practices regarding pregnancy, beliefs about the fetus, and childbirth (Schott & Henley, 1996). Societal messages in the United States in postcolonial times through the 1950s dictated that pregnant women should avoid any physical labor and should be coddled and focus inward, scripting women’s behavior in the early part of the 20th century. When these societal messages changed, pregnant women expected to work until the onset of labor, give birth, and continue with work as soon as physical recovery was complete (as in agricultural societies and recent U.S. feminist culture). Women who elect to step outside the norms of their culture are likely to be ostracized (Schott & Henley, 1996), providing feedback to other pregnant women about desired behaviors. An example of this is the relatively rapid change in U.S. culture that allowed pregnant women to drink alcohol while pregnant in the 1970s, then saw alcohol consumption in pregnancy as a public health problem that might warrant criminal prosecution (Golden, 2000, 2011).

Similarly, early-stage pregnancy was socially ignored until the 1970s when it became ever more imbued with notions of “life” and value (Freidenfelds, 2013). Cultural components play an active role here. Some social environments (consider poor, developing countries) give very clear messages that pregnancy loss levels are high and that it is best to avoid giving much thought to a preg- nancy until very close to delivery. Other social environments (especially cur- rent U.S. culture) encourage early pregnancy testing, visualizing the fetus on ultrasound and often even naming the fetus from the moment one is aware of its existence. Again, failure to adhere to the given norms brings sanctions from family members, friends and pregnancy-care providers. When messages about norms are in conflict or discrepant, this seems to make the emotions and lessons even more complex and challenges coping capacities (McCoyd, 2009a).

Emotion work (Hochschild, 1979) is socially guided and is consciously used by pregnant women motivated to maintain a sense of health, cope with negative events, manage pain, and achieve the desired birth (Carter & Guittar, 2014). Emotion work involves women bringing their emotions and emotional

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behaviors into congruence with socially derived feeling rules about how to feel (or behave as if they are feeling) (Hochschild, 1979). Feeling rules related to gender roles and maintaining “good patient” behavior influence how the social surround frames emotion work for pregnant/birthing women (and their midwives) (Carter & Guittar, 2014).

The social context of pregnancy also affects outcomes of attachment and representation. Huth-Bocks et al. (2011) found that social contexts such as experiencing poverty, domestic violence, and poor social support interact with balanced prenatal representations of the baby (ability to think about positive and negative qualities/behaviors attributed to the fetus/baby prenatally) to influence the baby’s attachment style at 1 year. Insecure attachments are more likely under conditions of high social stress and negative maternal prenatal representations.

This implies that attachment to the fetus and enactment of pregnancy is powerfully shaped by social environment. It further suggests that attach- ment may be limited in cultures that do not view pregnancy as something to bond with prior to birth. The earlier interpretations of prenatal attachment as a psychobiological imperative might need revision. Instead, conformity to the determinants of culture could be a salient determinant of prenatal bonding behavior.

New technologies of high resolution ultrasound, nuchal fold testing, cho- rionic villi sampling and others are used frequently in Western cultures and often viewed by pregnant women as bonding tools (as opposed to fetal health testing, their true intent) (McCoyd, 2007, 2013). The technological imperative which may be characteristic of highly developed countries (McCoyd, 2010a) interacts with variable community norms about pregnancy and childbirth. Hearing fetal heart tones, visualizing the fetus on ultrasound, and identify- ing the fetus’s sex are now all typical experiences for pregnant women that connect them more strongly to the fetus on emotional levels. This may enhance bonding in normal circumstances, but may also intensify grief if a perinatal loss is experienced.

SUMMARY OF DEVELOPMENT IN THE PRENATAL PERIOD

Pregnancy involves the development of both the fetus (from multicelled blastocyst through embryonic stages and into a fetus which is eventually capable of living independently) and development of the woman (from individual through pregnant woman through mother with responsibilities toward another person). The development of a woman from a nonpregnant individual to a new mother holding a baby is a prime exemplar of a maturational loss as we are defining it. Maturational losses are both a form of growth and maturation, but these events also entail losses because a known and (usually) comfortable stage of life is left behind for a new, unknown stage. Even in ideal circumstances—a planned pregnancy lovingly accepted by prepared parents (and extended families) who traverse pregnancy and delivery with no real complications—people experience losses. The woman loses true independence in that she must consider how her self-care and nutrition affects her pregnancy. She loses sleep, her nonpregnant body, and possibly her sense

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of being autonomous. Her partner may feel a similar loss of independence as she or he is now tied more tightly to the pregnant woman and may be relied upon for economic, emotional, and other support. Although these losses are generally welcomed as a sign of maturation and movement toward a chosen goal, they are losses nonetheless. The greatest loss is experienced by the fetus at delivery as she or he is thrust from the womb where every need has been met without any demand but growth. The moment of delivery requires the baby to breathe, do the work of swallowing to get nutrition, respond to stimuli, and lose the protected, darkened calm of the uterine environment. We tend to focus only on the growth of maturation, but nearly all maturation involves these types of poorly recognized losses as well.

LOSS AS EXPERIENCED BY A FETUS

Little is known about the experience of a fetus. The time of conception (when egg and sperm join to become one cell) through the development of multi- celled spheres that exist after cell reproduction for approximately 2 weeks is a time called the germinal period. From 2 to 6 weeks postconception (8 weeks from the time of the last menstrual period), the embryo grows and primitive nervous and circulatory systems develop. At the beginning of the third lunar month, the rudiments of all systems are present and the entity is called a fetus. The fetus is approximately one and a half inches at this point (12 weeks of gestational age) and grows to approximately 20 inches by the end of the 40th week of gestation. The genitalia and facial features develop during the third to fourth lunar month and bones begin to harden. The fifth and sixth months are a time of rapid growth. Sensory development occurs and eye movements begin between 16 and 24 weeks, with patterned eye movements that indicate sleep/wake cycles occurring by around 36 weeks of gestation. It is believed that shades of light and dark are perceived, but with little stimuli from the external environment, it is unlikely that any interpretation of these light/dark patterns can occur. Likewise, fetuses respond to auditory stimulation between 24 and 28 weeks of gestational age (Birnholz & Benacerraf, 1983), indicating the ability to begin taking in stimuli from the external world. Despite these sensory developments, most sense-making and meaning-making rely on expe- rience with the environment; the stimulus of light changes or auditory input likely makes no sense when the fetus has no context (or cortex for that matter) with which to interpret the sensations.

Some speculate that the mother’s emotional state has bearing on fetal experience because the chemical and metabolic substances that cross the pla- centa via the mother’s blood supply may have physical effects on the fetus such as increased heart rate, and so on (Ding et al., 2014). Indeed, recent research shows strong associations between mother’s anxiety and depression and the neonate’s birth-weight and temperament, as well as other complications of pregnancy (Glover, 2014). It is possible that the fetus experiences the physical aspects of some emotions (oxytocin leading to warm and comfortable feelings; adrenaline leading to anxious feelings), yet again, with no prior experience through which to interpret these sensations, it appears unlikely that the sensa- tions affect the fetus in cognitive or emotional ways. Further, we know that

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brain development occurs rapidly in the last weeks before delivery and after the birth, making developed and complex cognitions unlikely as the cortex only develops over the last trimester of pregnancy and the first 3 months of the neonatal period. As such, we cannot interpret how losses may be experienced by a fetus, just as we suspect a fetus has no context for making interpretations of changes/losses it experiences.

LOSS OF A FETUS AS EXPERIENCED BY SIGNIFICANT OTHERS

Biological Changes Associated With Intrauterine Fetal Death

The experience of miscarriage, intrauterine fetal death (IUFD) or other preg- nancy loss will lead to an abrupt change in the biological status of the preg- nant woman. If labor must be induced, the experience of laboring to produce a dead fetus/baby is physically and emotionally grueling. Hormone levels will drop dramatically (www.childbirthconnection.org/article.asp?ck=10184) just as with delivery of a live child. Prolactin release will signal oxytocin release and the woman will have to cope with breast enlargement and milk produc- tion until bound and unused breasts quit secreting milk. Endorphin levels are high during late pregnancy and delivery to blunt the pain of labor but these also drop off dramatically after delivery (www.nct.org.uk/birth/hormones- labour). These hormonal and other metabolic changes happen regardless of whether the fetus is born alive or not. It is assumed by most obstetricians and perinatal observers that hormonal changes promote feelings of depression ranging from “baby blues” to postpartum depression. The drop in hormone levels creates a propensity toward depressive moods that a pregnancy loss will exacerbate.

Women who lose a pregnancy often experience a sense of failure due to their body’s inability to accomplish the task of pregnancy and body image is likely to be affected (Bennett, Litz, Sarnoff Lee, & Maguen, 2005; Cacciatore, 2010). Women seem to interpret the inability to provide a “safe nest” as a fail- ure of the body that brings into question future ability to sustain a pregnancy. Clinical experience shows that women frequently comment on mistrusting their body’s ability to sustain future pregnancy. They often generalize this into a broad mistrust of their bodies. Certainly the medical language of perinatal loss—“failed” in vitro fertilization (IVF) cycles, “mis” carriage, “incompetent” cervix, and “elderly” primigravida (older first time mothers) all carry implica- tions of fault.

Although not totally consistent, most studies have found higher levels of grief associated with fetal death or stillbirth (after 20 weeks estimated age of gestation [EGA]) as compared to those experiencing miscarriage (prior to 20 weeks EGA) (Cole, 1995; Goldbach, Dunn, Toedter, & Lasker, 1991). Yet, the developers of the scale most commonly used to assess perinatal grief (the Perinatal Grief Scale) have found that complicated, chronic, and delayed grief responses are found most commonly in those who experienced early pregnancy loss (Goldbach et al., 1991; Lasker & Toedter, 1991). A biological interpretation that ties grief to gestational age might be based on the observa- tion that hormonal drops may be less precipitous earlier in pregnancy (since

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it is known that levels continue to rise for the duration of a pregnancy) and a smaller drop may lead to less intense mourning. But the medical literature is silent on this subject.

Phenomena frequently mentioned in the lay support literature (Davis, 1996; Layne, 2003) are the physical sensation of aching arms, a feeling of an abdominal void, and occasionally hearing baby cries when no babies are around. These sensations have provoked little interest from the medical com- munity; however, many peer counselors (parents who have had previous peri- natal loss) believe that these are biological phenomena. They explain that the mother’s body was primed to respond by holding the baby, with the weight of the baby supported by the mother’s arms and abdomen, and that one’s body is mourning these sensations. Some even speculate that hearing baby cries is due to a heightened awareness (with the implication that this is also biologically primed) that either allows one to hear at great distance or that interprets other sounds as the sounds one was expecting to hear.

Furman (1996) explains the phenomena of aching arms and abdominal voids in psychoanalytic terms. She observes that the integral role the fetus had to the mother’s own body means that after birth there is a “lack of restitution by being unavailable on the outside” (p. 432). She posits a need for restitution (or a body to hold) as a result of violated body ego integrity. She views the flexible body ego boundaries of pregnancy as too quickly stretched with no time to transition: the change from accommodating another (the fetus) within oneself to a return to “aloneness” happens rapidly. This quick return to a non- pregnant state, with no subsequent close physical contact with a dependent baby, leads to a sense of violated body ego that requires time for readjustment. She notes that therapeutic interventions designed to acknowledge the loss of the mother’s body integrity (comparing it to an amputation) and designed to promote a sense of the baby’s external existence (something the lay literature refers to as memory building) are beneficial to this readjustment.

Psychological Aspects of IUFD

Before the early 20th century, women seldom responded very emotionally to an early miscarriage as these were common, and actual birth was physically threatening to a woman’s health (Freidenfelds, 2013). More recent norms in Westernized countries include early diagnosis of pregnancy and heavy valu- ation of even the fertilized egg, which has changed the experience of miscar- riage for many women (Friedenfelds, 2013). Miscarriage (loss of the pregnancy before the 20th week of gestation) has become more recognized as a source of emotional pain for many women—there are sympathy cards for miscarriage. A robust lay literature and network of support groups for perinatal losses of many sorts have evolved since the early 1980s. Stillbirth (intrauterine death between the 20th week of pregnancy and birth) has traditionally been viewed as a “legitimate” death.

A recent Cochrane Collaboration systematic review observed that women were historically separated from their dead and dying infants due to the belief that if they did not see the neonate, there would be no attachment and hence

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no grief (Koopmans, Wilson, Cacciatore, & Flenady, 2013). Contemporary understandings about prenatal attachment are very different, of course; peri- natal practice has changed, and women are now encouraged to acknowledge their attachments, keep mementos (ultrasounds and bills when a fetal body is not available), and to see and hold their baby’s body if the state of development and delivery method allow this. Social work and chaplaincy services tend to be involved with bereaved mothers, and some nurses are specially trained for bereavement work. Yet none of these measures have been rigorously tested and found to be effective at preventing complications of grief, which are found in about one out of every five bereaved mothers (Koopmans et al., 2013). These newer approaches of assuring that newly bereaved parents receive support from social workers and/or chaplains in addition to their medical care providers have been widely supported, even if not considered “evidence-based practice” due to a lack of randomized trials of varied forms of care (Bennett et al., 2005; Koopmans et al., 2013). Indeed, it is difficult to imagine how one might ethically refrain from certain empathic interventions to assure randomization of treatments when women have just experienced perinatal loss. That said, a recent memoir about stillbirth indirectly notes the newer norm of social work intervention:

Not long after they started working on me, someone entered the room and said they needed a parent to come with them to the emergency room [where the baby was] to talk with the social worker and make decisions. . . . I know what “social worker” means. It means death. (Heineman, 2014, p. 21)

Although supportive interventions by social workers and chaplains may indicate “death,” it seems that some degree of supportive counseling is recommended by lay literature and academic reviews (Bennett et al., 2005; Koopmans et al., 2013).

Attachment theorists such as Bowlby identify psychological impacts of loss. Bowlby observed that

many of the most intense emotions arise during the formation, the maintenance, the disruption and the renewal of attachment relation- ships. . . . Similarly, a threat of loss arouses anxiety and actual loss gives rise to sorrow; while each of these situations is likely to arouse anger. (1998, p. 40)

He theorized that people are strongly motivated to maintain affectional bonds and “all the most powerful forms of attachment behavior become acti- vated” in the face of loss (p. 42). It is easy to see these behaviors and attempts to recapture pregnancy when women are told that their fetus has died in utero. Bowlby wrote:

In the case of the anxiously attached, mourning is likely to be character- ized by unusually intense anger and/or self-reproach, with depression, and to persist for much longer than normal. In the case of the compul- sively self-reliant [the avoidant], mourning may be delayed for months or years. (2000, pp. 139–140)

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This provides a different interpretation for why some women experience chronic, complicated, or delayed grief reactions (an interpretation that has noth- ing to do with gestational age). One might assume that the securely attached would grieve in a healthy manner. Further, women who have anxious attach- ment patterns may grieve in an extended and self-reproaching manner, while women who have avoidant attachment styles may delay or resist mourning. It is clear from clinical practice that women differ in the intensity of their grief and their level of anger directed at self or medical providers (as well as at women currently pregnant). Generally, the due date after a loss is a challeng- ing time, yet it is also often a point when emotions and longing begin to give way to restoration orientation.

Klaus and Kennell (1976) seem to have been the first to study perinatal loss empirically. They were pediatricians influenced by Bowlby’s conceptu- alization of maternal-infant bonding. They likened perinatal loss to the loss of a spouse. To posit such a serious equivalence was quite unusual as, at the time pregnancy loss was something to be hidden and forgotten. Most women were told to go home and get pregnant again as quickly as physically pos- sible. Hospitals disposed of the fetal remains, with women assured that they should not concern themselves with such details. Women found little support for their sense of loss and felt their expressions of grief to be stifled. Klaus and Kennell supported the development of hospital protocols to allow contact with the infant, and to avoid tranquilizing medications (noting that they interfere with grief work). They introduced the idea of “group discussions,” observing that  bereaved mothers benefit from reading other bereaved mothers’ diaries (pp. 235–239).

Although comparing perinatal grief to that of being widowed made such grief more legitimate, this conceptualization did not recognize the unique aspects of perinatal grief. Perinatal loss involves losing a part of oneself (the pregnancy), which differs from mourning an object separate from the self (a spouse). Further, social norms about the care and responsibility parents owe to children are unique to the parent-child bond, adding levels of guilt that are qualitatively different from those found between spouses. Parents are expected to protect children from harm, and fetal death can be interpreted as a tragic role failure.

Bowlby (1998) accepted Klaus and Kennell’s (1976) assertion that mourn- ing a stillbirth is like the mourning of a widow. Bowlby acknowledged that perinatal bereavement includes “[n]umbing, followed by somatic distress, yearning, anger, and subsequent irritability and depression . . . [and] preoccu- pations with the image of the dead baby and dreams about him” (1998, p. 122). He supported changed hospital protocols allowing women to hold their dead babies and to encourage naming them and conducting simple funerals. He recognized women’s need to acknowledge the baby’s existence as a separate entity in order to effectively mourn it. He notes “this loss becomes a nonevent with no one to mourn” (p. 123). Bowlby acknowledged the need to attach to the deceased baby in order to mourn. This chance to see and hold the baby had been implemented in most hospitals by the early 1980s, but came into question again following a study by Hughes, Turton, Hopper, and Evans (2002) that con- cluded that women who held their stillborn infants experienced higher levels

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of anxiety and depression in subsequent pregnancies. Critics of this research observed that all bereaved women in the sample were strongly urged to see their baby rather than merely being told that they might do so. Also, while anxiety in subsequent pregnancies is likely for those with pregnancy loss, the comparison group in the Hughes et al. study consisted of women who had not had a previous pregnancy loss.

More recently, research has focused on how the option to see one’s dead baby is presented. Erlandsson, Warland, Cacciatore, and Radestad (2013) con- clude that when contact between mothers and their dead babies is managed as a matter of course rather than emphasized by giving a choice, women tend to feel better supported and less frightened. While this study had its own weak- nesses, the findings are consistent with McCoyd’s experiences working with hospitalized women after perinatal death.

Klaus and Kennell (1976) asserted that “replacement pregnancy” may occur when fetal loss occurs and the mother is unable to work through the task of separation from the expected child. They wrote:

[W]e strongly encourage the parents to refrain from having a replace- ment infant until they have completed their mourning reaction. We explain that it is difficult to take on a new baby at the same time one is giving up the baby who has died. (p. 237)

They suggest a waiting period of at least 6 months. There is no well-developed theoretical or empirical basis for such a

prescription. More recently, the replacement child concept has been called a myth (Grout & Romanoff, 2000). As Koopmans et al. (2013) note, we are still improving our knowledge about effective supports for families affected by perinatal grief; becoming prescriptive about whether and when to have another pregnancy is surely premature. It is clear, however, that meaning- making (Neimeyer, 2001) is what counts most for grievers of all sorts of losses. For perinatally bereaved parents, the loss challenges their sense of coherence (meaning) and their assumptive world (Uren & Wastell, 2002).

Social Aspects of IUFD

It is likely that 15% to 20% of all recognized pregnancies result in miscarriage or fetal death (Cole, 1995) and that when early conceptions are included the level of loss may be as high as 70% (Freidenfelds, 2013). Although much more acknowledged than before, social recognition of perinatal grief remains lim- ited. Although not all women grieve early miscarriages, women who have actively attached prenatally are likely to do so. With social norms and prenatal technology that promote such attachments, it seems sensible to assume that many women will benefit from some level of support and validation for their mourning.

Although Bowlby (1998) is most identified with attachment theory, he was also very aware of the influence of culture on mourning. In his chapter on “Mourning in Other Cultures,” he cited Firth’s (1961) observations that funerals

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have three functions: (a) “bringing home that the loss has occurred” (p. 127) by allowing public expression of grief and inducting the bereaved into new roles; (b) allowing the community to say farewell and thereby reconstitute itself as a changed community; and (c) the occasion’s exchange of goods and services allows expression of reciprocal altruism. Bowlby (1998) added three observa- tions of his own: (a) a funeral allows the opportunity for the living to express gratitude to the deceased and to take action to honor the deceased; (b) anger may be given a socially acceptable expression (as in groups who direct anger at neighboring tribes or at the deceased during the ritual); and (c) they usually provide some acceptable period of mourning (sometimes ending at the end of the funeral itself). It is important to recognize that the perinatally bereaved usually receive none of this support as funerals are rarely held (particularly for those who terminate due to fetal anomaly). They have no community to validate their loss through ritual, no recognition by a community that it has lost something, and little other support. Expressions of gratitude or caring toward the baby make little sense when the baby never had a role within the social community and expressions of anger are both nonsensical and socially proscribed. Indeed, the implicit message is that since the baby did not have standing in the community, the mourning should be done quickly and out of sight. Because grieving rituals and social support enable more effective resolu- tion of grief, it is not surprising that mourning perinatal death is tricky.

Race, class, and ethnicity all have a bearing on the way prenatal attach- ment is viewed as well as the way perinatal grief is enacted. For instance, research indicates that African American bereaved parents have higher rates of pregnancy loss, more cumulative stress in the form of marginalization and oppression historically and currently, and cultural norms that encourage con- tinued bonds, higher emotional expression, yet less overt familial dialogue about grief and loss (Boyden, Kavanaugh, Issel, Eldeirawi, & Meert, 2014). These circumstances would seem to make grieving more challenging, and because traditional therapy is not generally viewed as a legitimate form of health seeking in the community, grievers may be left alone with difficult emo- tions. It is possible that religious and other communities provide support, but the academic literature is silent on this point. In a study that explored miscar- riage in several cultures (Wojnar, Swanson, & Adolfsson, 2011), lesbian couples were found to experience complex grief reactions because they had navigated many barriers to pregnancy, dealt with disapproving social contacts, and negotiated who would carry the pregnancy (Wojnar, 2007).

Models to assist with perinatal grief have been proposed. Wojnar et al. (2011) suggest that the Meaning of Miscarriage Model (revised from Swanson’s 1983 model) is a useful and culturally sensitive way to assist bereaved parents. The themes for intervention are explored with the bereaved. These themes include (a) coming to know (about the pregnancy and its potential loss), (b) los- ing and gaining (naming what was lost), (c) sharing the loss, (d) going public, (e) getting through it, and (f) trying again. These explorations are to be combined with Swanson’s theory of caring that includes (a) maintaining belief, (b) knowing, (c) being with, (d) doing for, and (e) enabling (Wojnar et al., 2011, pp. 554–555).

Family members are affected by perinatal losses as well and some of the “forgotten grievers” are the living siblings (Avelin, Erlandsson, Hildingsson,  & Rådestad, 2011). The death of a newborn in the neonatal

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intensive care unit (NICU) has been shown to have lifelong effects for some siblings (Fanos, Little,  & Edwards, 2009). It is likely that siblings who are aware of a miscarriage or stillbirth will react similarly to those who experi- ence the death of a sibling in the NICU: they will likely have raised anxiety and worry about their parents’ health and coping, and a feel like they are “not enough” for their parents (Fanos et al., 2009). Working to avoid fam- ily secret-keeping, and promoting rituals such as scrapbooking and other memorializations, seemingly assist siblings in coping after perinatal death (Youngblut & Booten, 2013).

Grandparents are often put into the “forgotten griever” category as well (Gilrane-McGarry & O’Grady, 2011). They have “double grief” as they mourn the grandchild that will not join the family, and also grieve for their son or daughter. Gilrane-McGarry and O’Grady observe that as most grandparents have experienced many other losses due to age, they experience cumulative grief as well as “double grief.”

Other times, family and peers offer little comment, assuming that everyone can move on as if nothing happened. The general lack of rituals for enlisting support and saying good-bye in this type of loss differ drastically from other types of loss where funerals, memorial services, and social sup- port are common following a death. This lack of ritual has consequences as the mother and her supporters try (mostly in vain) to either move on with- out acknowledgment (difficult because the mother is feeling loss) or find new ways of observing the loss.

Social recognition of loss is complicated further when the mother has a fetal anomaly diagnosed and subsequently ends the pregnancy. These are desired pregnancies, “electively” terminated (McCoyd, 2007, 2008, 2009a, 2009b; Rapp, 1999), and if miscarriage and stillbirth are silently disenfran- chised losses, the termination of a pregnancy affected by fetal anomaly is actively hidden because of the stigma associated with abortion in U.S. culture (McCoyd, 2010b). Although women may disclose the loss to their intimates, they often do not provide the full story. This may leave them feeling that what support they receive is the result of deception and they have difficulty utiliz- ing it effectively (McCoyd, 2007).

Perinatal bereavement is experienced and expressed in a variety of ways. The level of prenatal attachment has much to do with the way the loss is expe- rienced and mourned, just as the medical care providers’ responses and sup- port, and the social network members’ responses are crucial to how bereaved parents grieve. Only a full biopsychosocial assessment prepares the clinician to practice intelligently and sensitively in such cases.

OTHER TYPES OF PERINATAL LOSS

Perinatal loss is experienced most often in miscarriage, stillbirth, and neonatal death. Aside from these obvious forms, infertility is a type of disenfranchised perinatal loss. We address this in detail in Chapter 7 (Young Adulthood). Here, we briefly address the alternative (and ever-expanding) pathways to parent- hood that entail loss of the typical and highly valued pregnancy and childbirth experience.

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Infertility

Infertility is defined as a year of unprotected heterosexual intercourse that does not lead to pregnancy (Greenfield, 1997). It is experienced as a perinatal loss (see Gilin reading in Walter & McCoyd, 2009). The rate of infertility in the United States is hard to estimate and seems to vary based on race, social class, age, nulliparity (whether one has ever been pregnant before), and other demo- graphics, but is estimated to affect 7% to 15.5% of “eligible women,” (women who are trying to get pregnant) (Thoma et al., 2013). With more women post- poning pregnancy due to changing economic and social norms for emerging adults (see Chapter 6), the rate of unwanted infertility likely will rise as more women who want children age beyond their optimal fertility.

These women and couples feel the loss deeply when they are unable to become pregnant. Many people begin to visualize the hopes they have for pregnancy long before they pursue it. Infertility is an assault to these expecta- tions and creates losses including an increased sense of vulnerability, a loss of self-esteem, and a belief that one’s body is defective and/or has betrayed one (Lind, Pruitt, & Greenfield, 1989). This is a silent, disenfranchised loss that brings little support from others. The financial and emotional expenses are seldom recognized even by people who are supportive. The reading by “Elizabeth” at the end of this chapter captures some of the stresses involved in infertility treatment as every period (menses) is viewed as another loss, sometimes compounded by the complications attending assisted reproductive treatments.

Assisted Reproductive Technologies

Full discussion of the many available assisted reproductive technologies (ART) is outside the scope of this chapter, yet anyone using ART experiences the loss of the “normal/typical/customary” way of creating their family. In the United States in 2010, approximately 1.5% of all births were due to ART, with states such as New Jersey, New York, Massachusetts, and Connecticut accounting for the highest rates (between 3.5% and 4% of live births in each of those states) (Sunderam et al., 2013). Using the definition of Sunderam et al. (2013), ARTs encompass any measures that require handling of both eggs and sperm. They do not count ovulation promoting medications that may enable typical coitus to produce a pregnancy with a heterosexual partner, or insemination with donor sperm, even though these are also fertility treatments that entail medical assistance and a sense of loss. Now, it is possible through In-Vitro Fertilization of one woman’s egg with a man’s sperm, subsequently gestated in a second woman, and raised by a third woman to create a child with three mothers, one genetic, one gestational and one social/adoptive— see this link to a New  York Times story illustrating this: www.nytimes.com/ interactive/2010/12/22/magazine/20101222-twiblings-audio.html?ref= assistedreproductivetechnology&_r=0.

At each level of technology, losses include: a changed sense of body integrity and function; changes in the relationship with one’s partner; losses of

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embryos; and loss of innocence about the “natural ease” of creating a family. Many issues must be resolved: how much ART to use; how long to keep trying; how to assess the ethics of using donors and surrogates; and what and when to tell children about their conceptions (Paul & Berger, 2007). Additionally, losses due to the birth of very premature children are common after ART (either in the form of a death loss when not yet viable or loss of the healthy baby as when multiples are born and have the sequela of prematurity such as cerebral palsy, vision and hearing impairments, and cognitive impairments). Multifetal Selective Reduction is recommended when more than three fetuses “take” and some even recommend taking the pregnancy down to a singleton (Evans & Britt, 2005). As the reading by Elizabeth shows, these reductions leave a feel- ing of loss and grief even when they go as planned. Although the joy of a child joining one’s home may be great, there are challenges with ART that may entail loss, as can be seen in the following: www.nytimes.com/2009/10/11/ health/11fertility.html?ref=assistedreproductivetechnology

Medically Complicated Pregnancies and Loss

Women often expect that pregnancy, once achieved, will proceed with little effect on their lives until the time of delivery. Advances in pregnancy care have reduced maternal death and pregnancy complications over the last century, though recent concerns about maternal mortality worldwide are attributed to everything from aging mothers, more women with chronic illnesses becoming pregnant, anemia, ART, and poor obstetrical care (Lumbiganon et al., 2014). Complications occur in 10% to 20% of pregnancies in developed countries and range from hyperemesis gravidarum (Munch, 2002a, 2002b, 2009) to placenta previa to premature labor to pregnancy induced diabetes or hypertension. All of these conditions have biological, psychological, and social aspects unique to the condition, but all have outcomes in common. Women experiencing these conditions experience loss of control, both because their bodies are not behav- ing in the ways they would choose, and because required medical care limits autonomy (Bachman & Lind, 1997). Anxiety, grief, boredom, fear, ambiva- lence, and guilt are also commonly associated with pregnancy complications (Bachman & Lind, 1997). Social workers and other caregivers can validate a woman’s frustration and fear and also promote control where it is possible. Notably, mental health status prior to conception is a primary determinant of pregnancy outcome (Witt, Wisk, Cheng, Hampton, & Hagen, 2012) often affected by prior losses and/or psychosocial contexts. Social workers and other counselors may be able to intervene to improve the odds of healthier mothers and babies.

Prenatal Diagnosis and Termination for Fetal Anomaly (TFA)

With the advent of ultrasound and amniocentesis, the ability to see inside the uterus to assess fetal health became a reality. Most pregnant women do not hesitate to engage in prenatal screening (which determines risk of

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an anomaly), particularly in Westernized nations (Santalahti, Hemminki, Latikka, & Ryynaen, 1998; McCoyd, 2013). Advancing maternal age is known to increase the risk of trisomy conditions (chromosomal abnormalities), yet obstetricians encourage screening for all pregnant women because other fetal anomalies might be detected (genetic, cardiac, and neural tube defects for example) (ACOG, 2007). Because many more young women get pregnant than older women, the number of pregnant women under age 35 whose fetus gets diagnosed with an anomaly is greater than the number of “older” women with an affected pregnancy (Choi, Van Riper, & Thoyre, 2012). Most women who are told that their fetus is at higher risk for an anomaly have not previously considered this possibility (McCoyd, 2007, 2013) and may not understand that they must have a diagnostic test to determine whether the fetus does indeed have whatever condition is of concern.

Positive diagnoses rarely predict the degree (intensity) of the condition. As indicated in the reading by Elizabeth that follows this chapter, or the read- ing following Chapter 3 (Toddler/Preschool) by Heather Douglas, there is frequently much uncertainty about the viability of the pregnancy, the possi- bilities of a term birth, and the outcomes for the baby born with any particular condition. Complicating matters further, women and their partners have only a brief time to decide whether to trust the information they have (McCoyd, 2010a, 2016) and whether they believe themselves capable of bringing such a pregnancy to fruition and raising the child (McCoyd, 2008). Following the angst of quick decision making under conditions of uncertainty, when ter- mination is elected women often feel a short surge of relief, but this is often followed by grief they do not expect. Although most women are clear that they are losing a pregnancy/fetus they desired and became attached to, they often feel constrained in their grief because the “treatment” of pregnancy ter- mination is, technically, an abortion—a medical procedure fraught with stigma (McCoyd, 2010b). Women and their partners end up mourning in secrecy, making a loss that is already difficult even more challenging. Helping women to recognize the reasons for their decision, helping them lower their sense of guilt, and helping them recognize their right to grieve the healthy child they hoped to have are critical to effective intervention.

Delivery of a Premature or Medically Compromised Neonate

Sometimes a medically complicated pregnancy yields a premature baby or neo- nate. Other times, premature labor starts and cannot be stopped or membranes rupture and the neonate is born. Time magazine recently referred to a “Preemie Revolution” (Kluger, 2014), noting that 478,790 babies were born prematurely in 2010 and 462,408 survived (p. 29). Yet of those born at 24 weeks EGA, just over half will survive, and most of these will experience complications such as cerebral palsy, neurocognitive delays, and hearing and vision impairments. By 28 weeks EGA, most will survive and over half will survive without noticeable complications (Kluger citing CDC, 2014, p. 29). Even when survival is likely, parents must endure the highly technology driven neonatal intensive care unit (NICU) with its frightening alarms and machines, and manage fears for their child’s welfare currently and in the future. Parents are also concerned about

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how to pay for both the hospitalization and therapies to ensure that the child will catch up with developmental milestones over time. These fears (and loss of the expected joys of having a child) combine with a sense of vulnerability that accompanies most losses; additionally, parents must allow the medical system to take charge of nearly every aspect of their newborn’s care, denying them bonding opportunities and the confidence of competence derived from providing the newborn’s care.

The losses identified in Kudeva’s reading at the end of this chapter are heightened when a baby is born prematurely. Not only do parents have little chance to have the birth experience and bonding time they wish for, but they have real concern about whether their child will survive the hospitalization unscathed. As Boiler’s piece (following Chapter 3) indicates, the losses keep coming as the parents navigate each day hoping to keep home life and work life managed while they try to spend as much time as possible at the NICU doing “kangaroo care” (holding skin to skin—known to enhance the well-being of preemies both short- and long-term).

These same types of losses are often experienced by parents whose child is diagnosed with a disability or developmental disorder of some sort at birth. As Douglas’ reading (end of Chapter 3) notes, parents sometimes are aware that their fetus has a diagnosis, but many are hoping the newborn does not show evi- dence of the diagnosis, or is less affected than predicted. The losses involved in starting the parenting relationship in a medical setting give way to the ongoing losses of learning what delays their child is likely to experience and advocating for needed services rather than enjoying the congratulations of friends. Notably, such congratulations are often awkwardly tinged with sadness or left unspoken.

INTERVENTION

Intervention for perinatal grief is as hidden as the loss. OB/GYN providers seem unfamiliar with resources for psychosocial intervention, whether Shear’s work with complicated grief, perinatal loss support groups, or other targeted psychosocial intervention (Lacasse & Cacciatore, 2014). In a study of medica- tions used after perinatal bereavement, those given either benzodiazepines/ other sleep aids or antidepressants were most often given the prescriptions by their OB/GYNs, most frequently within a week of the loss (Lacasse & Cacciatore, 2014). This raises concerns about the wisdom of intervening with treatment that has potential for iatrogenic harm prior to allowing natural heal- ing or trying less intrusive psychosocial treatment.

McCoyd (1987) developed a framework for intervention for use with perinatal loss that has been applied by MSW students to multiple types of loss over the last decades. Called the Five Vs, it provides interventions the practitioner can use to guide the work without resorting to structured, predetermined tasks. The Five Vs provide a model for grief therapists who desire some structure for the work, yet recognize the importance of allow- ing the bereaved to follow their own needs and inclinations. (The reading by Douglas following Chapter 3 [the Toddler chapter] also provides interven- tion strategies for use in perinatal work and with parents who have a child with a disability.)

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The Five Vs are validating, valuing, verifying, ventilating, and being visionary. Validating is often one of the first steps of work with the bereaved, particularly if the loss is disenfranchised. The primary task of validation is to help the bereaved to identify areas where they may not feel sanctioned to grieve, and to recognize and validate the right to be a mourner. Particularly when a pregnancy has not been revealed, the bereaved parents may not have others who acknowledge their loss. Helping women and couples to recognize the right and necessity to mourn is a critical first step to facilitating the healing process.

Valuing and verifying may be subsumed within the validating domain. By recognizing that the lost entity had value to the mourner, the clinician vali- dates the griever’s right to mourn. Implicit within this is a message that the pregnancy/healthy baby was of value to the bereaved parent and that there was worth to what was lost. Helping the bereaved parent to discuss all aspects of the lost entity/person’s value acknowledges the importance of the dis- rupted bond (a domain for exploration). Verifying includes any intervention to assist the bereaved with gathering tangible mementos and/or developing rituals that “make real” the loss. These reminders can be used by the parents to stimulate support from friends and family. Creating memory boxes with footprints, handprints, locks of hair, and pictures if possible is useful to par- ents’ own grieving, but can also be used to remind others that the baby had a presence in the world.

Most social workers and other grief clinicians are quite familiar with ventilating. They regularly urge clients to “vent,” to “let it all out,” or in other ways be emotionally expressive. Ventilation can be done in a variety of ways and does not always need to incorporate tears. Indeed, if the clinician falls prey to the grief-work hypothesis and insists on tears as a form of ventilation, they actually risk harming the mourner. Ventilating entails an expectation that the bereaved is able to talk about the loss with authenticity and consistent affect and content, not necessarily overt tears. In pregnancy loss, gender ste- reotypes of mothers mourning with tears and fathers with rigid control often hold true, but not always. In my practice, I have found that mothers often are overtly emotionally expressive until the due date and then their partners all of a sudden start to express anger, sadness, and irritation. It seems as if the partners “stay strong” for the mother and once her emotion has run its course, the partner’s authentic response is allowed expression. Ventilating may lead to meaning-making and the clinician should explore the many ways the loss has affected the griever’s life. Further, in this phase of work the grief therapist is most compelled to remain quiet and provide support but no platitudes or trite phrases that could interrupt the mourner’s ability to ventilate their thoughts, feelings, and reflections freely.

Being visionary is often part of the ending process, but occurs throughout the work (whether formal grief work in a therapeutic setting or in supportive friendships). This generally entails assisting the bereaved person to think through likely future events and recognize their potential for intensifying grief feelings (Rando’s [1993] STUG reactions). In being visionary, the grief therapist can share lessons learned from others about when and where grief is likely to be heightened. With perinatal loss, the due date for a lost pregnancy often revives feelings of grief. Grievers often need to reflect and mourn at this time.

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Likewise, helping the perinatally bereaved anticipate that future pregnancies are likely to be fraught with reminders of the loss can help them recognize and manage anxiety if that comes to pass.

READINGS

Disenfranchised Grief Following Negative Childbirth Experiences

Rumyana Kudeva

Rumyana Kudeva is a New Jersey licensed clinical social worker in private practice. She has provided outpatient counseling to children, families, and couples in the past 7 years. She specializes in providing counseling to women during their childbearing year, treating perinatal mood and anxiety disorders and posttraumatic stress disorder due to childbirth. Rumyana received her bachelor’s and master’s degree in social work from University of Sofia, Bulgaria and is in doctoral studies in clinical social work at the University of Pennsylvania, Philadelphia. Her clinical and research interests are in women’s mental health, feminist studies, grief and loss, posttraumatic growth, and narrative theory.

Introduction

When we talk about grief and loss during the postpartum period people usually think about childbirth complications resulting in the death of the baby. In my clinical research and work, I have encountered many women’s stories of loss and grief even after seemingly uncomplicated childbirth. In fact, I might have never become sensitive to those stories were it not for the grief that washed over me after the birth of my second son. This type of grief is complex and multilayered; it encompasses not only the objective charac- teristics of a birth gone not as envisioned, but also the subjective realm of the lived experience of childbirth and the way the woman imagined her role in the birth of her child.

Nevertheless, due to women’s ambivalence, the grief is often unacknowledged and denied by broader society. Comments such as “at least you have a healthy baby” leave women silenced and invalidated in their grief. Cultural norms and technocratic views of childbirth as means to a baby and not a rite of passage into motherhood can leave women feeling belittled and even blamed for having unrealistic expectations (Davis-Floyd, 1992; Kitzinger, 2006). The disenfranchisement of new mothers’ loss by society leaves no room for grieving which can lead to unresolved feelings and isolation (Doka, 2002).

Furthermore, the disenfranchisement by others is often internalized and becomes self-disenfranchisement, which leads to feelings of shame and guilt for having negative feelings toward the birth of their child (Doka, 1992).

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Many women never speak with others about those feelings knowing that they would be misunderstood and judged. Not grieving openly not only pro- longs and complicates the experience of grief, but also can result in unre- solved grief, which may resurface in a later pregnancy or loss. Moreover, self-disenfranchisement can directly affect one’s ability to seek and find new meaning and create one’s own grief narrative that facilitates healing and acceptance of the postloss life.

The Influence of Developmental Tasks and Milestones

One of the major developmental tasks during the childbearing year is the woman’s transformation into a mother. This is a deep and laborious pro- cess, seen by some as a rite of passage into motherhood (Davis-Floyd, 1992). The new mother needs “holding” and empathic caring to encourage self-nurturance and growth into her new role (Kleiman, 2008). Coming out of childbirth feeling disempowered and silenced can complicate this process and deepen her feelings of failure and inadequacy (Kitzinger, 2006). Furthermore, disenfranchising women’s grief can deepen their isolation at a time when they need the most support and social “holding.” Sarah (all names in this text are aliases to protect the confidentiality of the interviewed women) shared with me her struggles to find support for her grief: “I feel very isolated and keep in the feelings I have. . . .”

As mentioned above, some women may experience difficulties in acquir- ing the new maternal role and accepting the changes in their self. The incon- gruities between the imagined self as an active birthing woman and the self which in contemporary Western birth practices is often turned into a passive recipient of medical care/services leave many women disempowered. They may have feelings of helplessness and self-doubts as new mothers (Davies- Floyd, 1992). Lynn experienced this: “Not being sure of myself and my experi- ences, not feeling like a true mom because I didn’t do it vaginal.” Similarly, Andrea talked about the confusion that set in after the birth of her daughter: “And it is the most helpless position. You feel like when you are a mom all this knowledge should be downloaded to you and I had no idea.”

The Biological Impact of the Loss

The disenfranchisement of women’s loss of the dreamed of birth and the way they imagined their role during the birth of their child can complicate their bonding with the baby. Kelly described it: “At first I felt guilty that I didn’t love him enough . . . at first I really thought that I didn’t love him as a mother should, I just felt that I was babysitting.”

When the continuum of birth is disrupted by hospital procedures and practices, or the mother and the baby are separated from each other, it may disrupt their initial bonding (Odent, 2009). Maggie did not get to see her sec- ond daughter for “almost three hours after I gave birth to her,” causing her to feel “frazzled, freaking out” and even feeling physically unwell. Jean Liedloff (1985) describes the grief: “If the imprinting is prevented from taking place, if the baby is taken away when the mother is keyed to caress it, to bring it to

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her breast, into her arms and into her heart, or if the mother is too drugged to experience the bonding fully, what happens? It appears that the stimulus to imprint, if not responded to by the expected meeting with the baby, gives way to a state of grief [emphasis added]” (p. 59). Liedloff (1985) argues that when the baby is brought back to the mother later, when she is in a state of mourning, she may have difficulties bonding with him or her, which can induce feelings of guilt and shame for being inadequate as a mother. Maggie experienced this with both of her daughters. She is certain that “it would have been a different experience if I had gotten a better first moment with my children, my first two children, you know.”

There are deeply ingrained cultural norms of childbearing. Almost all of the women who I interviewed shared an expectation that they should have the inner wisdom and ability to give birth vaginally. When their birth experi- ence differed, they were left with shaken self-images and a sense of inadequacy. Elizabeth felt as though her “body has failed me! Yet again!” She spoke about losing her sense of womanhood and feeling “so not feminine and freakish.” Another first time mother, Kaya spoke at length about her panic and doubt that her body was not working as it was supposed to after her water broke and her contractions did not start on their own: “I just felt that my body is failing me and that I was doing it wrong.”

In addition, a negative childbirth experience can have an impact on future reproductive decisions (Porter, Bhattacharya, & van Teijlingen, 2006). Mary was sad telling me this: “And probably that is the reason why I don’t want to have any more children, because I don’t want to have another C-section. Both my husband and I wanted to have more children but that’s not the way to do things, I guess.”

The Psychological Impact of the Loss

One of the most common consequences women voiced about the disenfran- chised loss of the dreamed of birth was shaken confidence and impaired self- image. Their sense of themselves as capable, independent women and mothers was bruised by the loss of agency and autonomy during contemporary child- birth. They often shared feelings of failure and incompleteness. Maggie felt that she did not know who she was after compromising with her main life beliefs and principles in the process of labor: “With my second daughter after I gave birth I felt so unsettled. I felt so unsure of myself. I doubted who I was because I always lived and tried to do things in my own principles.” Maggie spoke poignantly of the experience of loss of her voice, her power, and ulti- mately agency. She felt as though she had betrayed herself: “I was so mad at myself for not sticking up for me, for not sticking up for my baby, for not doing what was right for us.” Losing her voice during her second birth resurfaced again during her postpartum period when she started to question her prin- ciples and beliefs, silenced her feelings and her grief due to others’ comments, and did not allow herself to actively mourn.

Self-directed anger resurfaced in other grief narratives as well. Sarah had tears in her eyes while recalling her “failed” natural birth: “So I end up telling myself I am dumb, why didn’t I do that? Why didn’t I stand up for myself? I think I gave my power away.” Violating the cultural norm of the happy and

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joyful mother, some women find themselves feeling guilty and ashamed for having any negative feelings about a birth that has resulted in a healthy baby. Societal messages such as “at least you have a healthy baby” trigger some women to disenfranchise their own grief and feel bad as mothers for harbor- ing grief. Their healing was hindered by the experienced shame (Attig, 2004; Neimeyer, 2005–2006).

The Social Impact of the Loss

Some women talked openly about their frustration with their partners who were not emotionally supportive of their reconciling with the birth experience. Mary felt that her husband was completely supportive of her but still “he just doesn’t get it.” Elizabeth hoped that her husband could just “try to understand and put yourself in my shoes a little bit!” and “oh God, can I have just one ounce of compassion and understanding about this?” Grieving alone when they have been through the childbirth together with their partners leaves some women isolated and disenfranchised in their feelings as Andrea recalled in tears: “Yeah, it was very lonely for sure.” They were often urged by their part- ners to move on, forget about the birth, and focus on the positive. At the same time, the partner may also experience a loss of an imagined role during child- birth and could struggle to provide support to the woman due to his own feel- ings of shame, anger, and unspoken grief.

Another important relationship that might be affected by the loss of the dreamed of birth is the relationship with the care provider. In the tech- nocratic model of care, women may not develop caring relationships due to the mechanization of the process and providers’ failure to recognize the spiri- tual nature of birth and women’s related needs (Mauger, 1998). Many women report feeling abandoned, alienated from their experience and misunderstood or ridiculed by hospital staff and their birth attendants (Kitzinger, 2006). These feelings can foster a traumatic association with the birth process and trigger a grief response to the lost connectedness with the provider (Lyerly, 2013).

Interventions

Narrative therapy interventions seemed to be most appropriate in working with women who have experienced disenfranchised grief after the loss of their dreamed of birth. As Lewis Mehl-Madrona states: “Everything is a story, including our identities, our selves, our meanings and purposes, our theories about the world” (2010, p. 12). Simply witnessing one’s pain validates the loss and the grief experience. The cocreation of a grief narrative which is part of the woman’s birth story can facilitate the re-inventing of a new self-narrative.

Psycho-education about grief and loss and about the developmental tasks one has to achieve will also normalize women’s feelings and validate their reaction to a disappointing birth experience. Also other creative therapies such as participation in healing circles, art therapy, journaling, and meditation can be helpful.

Additionally, mindfulness informed therapies can help women to accept their feelings toward the birth and foster loving kindness toward them- selves, which further validates their previously disenfranchised grief. Healing

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through forgiveness of one’s flaws, and those of professionals or loved ones who attended the birth, can foster a postgrief growth and peace with the expe- rience of loss. Postloss growth may also transfer into offering support to other women seen as “sisters in loss/scars.”

Discussion of Optimal Social Supports that Enable Coping with this Loss

As Mehl-Madrona states: “No one heals without community” (2010, p. 10). Because every individual birth story and grief narrative is part of the collec- tive narrative of birth and grief (England, 2011; Mehl-Madrona, 2010), every woman needs to be held by their “tribe” while reconciling with their birth experience. Peer support groups can be very helpful in meeting the need to be witnessed in their grief and belong to a group of women who “walked on the same path.”

Another important piece in social support is including the family in treatment by providing psycho-education and even marriage counseling if needed to facilitate communication. It is important to assure emotional sup- port from friends and family so the woman does not isolate herself in silence. Empowering women to advocate for respectful treatment by others is an important part of self-growth and self-affirmation.

My Septuplets

Elizabeth

Elizabeth is the middle name of a mother who experienced infertility, a multiple preg- nancy with seven embryos, a multiple pregnancy with twins, and a singleton birth. Due to the nature of her story and the continued stigmatization of pregnancy termina- tion, she has elected to use a pseudonym.

In April 2007, I headed to my follow-up ultrasound appointment at my reproductive endocrinologist (RE) after having completed injectable fertility medications and artificial insemination for the first time. Rey and I were very excited. I finally had a positive pregnancy test and my numbers were looking good. Our excitement was tempered with nerves. We had been trying to get pregnant for a year and had completed 3 months of Clomid attempts prior to the injectable meds. We were getting used to the ups and downs of fertility problems. Every month we would do exactly as our RE recommended, we would get excited about the prospect of being pregnant, and then I would get my period, and the sadness and frustration would set in. This time was different though. Something had worked! I was finally pregnant. I knew my numbers were a little high, so we speculated about whether I was pregnant with twins. I walked into the ultrasound room, and by this point I was well versed in the ultrasound protocol. Rey came in with me for this appointment. The ultrasound began and I could tell the tech was quieter than usual. I imme- diately asked if there was a problem. He began reading the ultrasound to his

Grief and Loss Across the Lifespan52

assistant in the room. “Baby A is . . . by . . . (size).” I felt a sigh of relief. He then said, “Baby B is . . . . by . . .” I thought “Wow, there are twins!” He then said “Baby C is . . . by . . . .” I thought “Oh my God, there are triplets!” I was scared and overwhelmed, but still there was a feeling of excitement. He then said “Baby D is . . . by . . . .” I then felt scared, the excitement faded and the fear took over. I remember saying, “Are there any more?” The tech responded “No,” and left the room to get the RE.

When she entered the room, she took control of the ultrasound machine and looked at the babies. She immediately started talking to me about selec- tive reduction. Selective reduction was something I truly had never thought about. She spoke so frankly about our children and the need to reduce to twins due to health concerns for me and the babies. I honestly did not know what to think. I was so overwhelmed and scared. Rey and I left that appointment scared and very confused. I had another ultrasound scheduled in a week with the RE. During that week, Rey and I talked a lot about what to do. We got a lot of unsolicited advice from family, we researched the outcomes of quad preg- nancies for both the mother and the children. Rey believed reducing was best, but was willing to do what I wanted. I was not sure what to do.

The RE had suggested that one or two of the babies may naturally stop developing. The thought of wishing for that to happen seemed inconceivable after waiting so long to get pregnant. The guilt of wishing for that was terrible, the guilt related to thinking about reducing was even worse, and the thought of carrying and having all four was frightening. It seemed like an impossible situation.

As we went to the next ultrasound, I remember feeling as if there were more than the original four. We entered the ultrasound room again, with the same tech. This time I just laid still and waited for him to start talking to the assistant. He started with Baby A, followed by Baby B, then C, D, E, F, and G. I just laid there in disbelief, but not complete shock. I had prepared myself that there could be more, and I really had felt there were more. The RE entered the room once again and immediately gave us the name of a selective reduction specialist who she would recommend. At this point, it was not even an option in her mind. I have to say, following that appointment I do not think there was an option in our minds either. I did Google septuplet births and found one family that had successfully delivered all of the babies. The risk to me and the babies seemed too high and we began to research selective reduction and specialists. This was a terrible time for me. I did not know what to do. I felt like I did not want to connect with any of the babies knowing that I was planning to reduce five of them. Even though we had quasi made the decision to have the reduction, the thought of going through with this seemed incon- ceivable. How do I save two of them and kill five of them? How do the doc- tors choose? This thought just haunted me. It did not seem fair to the babies. I wished I wasn’t pregnant.

I thought of all of the options. Option 1, have all of them. Rey was afraid that I would not survive and that the babies would have medical and developmental delays. Option 2, have the reduction and have a set of “twins.” This just seemed so unfair to me. In my mind, they were all my children and I viewed them as siblings who deserved to be together. The thought of sacrificing five of them to save two seemed utterly unfair to me.

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Option 3, end the pregnancy completely. This seemed, in some crazy way, the fairest of all of the options. I remember waking up one morning and just not getting out of bed. Rey went to work and I just did not. I stayed in bed and just felt like I did not know how to move on. Eventually Rey called and realized I was still in bed. He came home from work and we had a long con- versation about our “options.” Rey was very clear that he wanted to reduce to twins. He felt like it would be awful to not give at least two of them a chance at living. I understood that, and logically I agreed. Emotionally, my mind still screamed that this was not fair to the other five. There were times that I thought I should just try to have all of them but the fear was overwhelming and Rey was completely opposed to that idea. I really felt that unless I made the decision to reduce to twins and give this pregnancy the best shot, my marriage would suffer. I was not sure how we would ever get past losing all of them if I chose to end the pregnancy or how we live with seven children with disabilities, even if I survived. None of the options seemed good to me. The reality we faced was unfair, scary, life altering, and sad. At the end of that day in bed, I had made my decision to move through the process of reduction and hope to get through to the other side with two healthy babies and an intact marriage.

At that point we started the process of scheduling the selective reduction procedures. When I first made the call to the doctors’ office, I spoke with a genetic counselor. She was very understanding and sympathetic. There was much more to this process than I had imagined. The first step was conducting a chorionic villi sampling (CVS) to determine which babies had no genetic abnormalities and were placed well in the uterus; they would be saved. During this phone call, I was also told that the CVS would be conducted at 13 weeks and the reduction at 14.5 weeks. I was extremely upset when I real- ized I would have to wait until the second trimester to have any of this done. Once I had fully made the decision to reduce, I wanted the procedure to be done as quickly as possible. Why let them grow when we knew we would be reducing them? It was explained to me that there was a specific time win- dow in which they do these procedures for the health of the remaining babies. I accepted that because I had no other choice, but it was very difficult to know that I would be carrying these babies for weeks with no intention of giving birth to them. During that time I hoped that some would naturally reduce. Rey and I continued to go to our weekly ultrasound appointments and at week 8, we learned that the set of identical twins stopped developing. Relief was my initial feeling. I also remember feeling sad for their loss, but at the time it was overcome by the feeling of relief that this had naturally happened. It wasn’t until later that I would feel the true loss of those babies.

Somehow, week 13 finally came and it was time to go in for the CVS. I had some idea of what the procedure entailed but I really was not concerned for my own discomfort. As I walked into the hospital I remember thinking I  just needed to do what the doctor told me and that this time would pass. I tried to tell myself I was doing all of this to have the healthiest outcome for this pregnancy. I am not sure I ever bought that logic completely, but I did not really have any other choices. At this appointment, they told us which babies they were planning to save. I started to feel a connection to those babies and relief for them. This was tempered with feelings of sadness and guilt for the

Grief and Loss Across the Lifespan54

remaining three that were unlucky enough to be placed in less ideal spaces in my uterus. The procedure was not easy, it was extremely uncomfortable and painful, but somehow I felt that I deserved the discomfort. It was nothing com- pared to what the three babies who were being reduced would endure.

In the days following the CVS, I began to feel slightly ill. I was running a very low-grade fever, and had some discomfort in my abdomen. This all seemed to be “normal” according to the doctors. We received a call a few days after the CVS that the genetic results were back and that each fetus they tested was normal. This was the first “good news” we had heard since the original pregnancy test. While we tried to be happy for the good results, it was dif- ficult. The reduction was in a week, it was a day that I was dreading but also something I was looking forward to having behind me.

When the day of the reduction arrived, it was a surreal experience. There were other women who were having the same procedure done. Seeing those women made me feel better. I was not the only person making this decision. When they called my name and we went back for the procedure, the first thing they did was conduct an ultrasound. Following the ultrasound, the doctor came in and told us that one of the fetuses they were planning to save was leaking amniotic fluid. This made sense to me because I had been bleeding and feeling ill since the CVS. Saving this fetus was no longer an option. He told us that he now needed to pick a different fetus but that this one would not have had genetic testing, “Was this OK with us?” At this point, I just told the doctor to choose a fetus based on location and not to worry about the genetic testing. I just wanted the procedure over and I wanted no part of deciding which fetus would be saved. Now I felt so badly for the baby that originally was going to be saved and now was not, and felt relief for the baby that was suddenly going to be saved. Once again none of this seemed remotely fair in my mind. Shortly after I told the doctor to do what he felt best, he completed the procedure. It was fairly painless physically, but emotionally I just tried to tell myself that it would be over quickly for all of us. I remember praying through the procedure and remaining as still as possible. It was a very sad moment.

Following the procedure, I was told to lay down for a half an hour and then I would be brought to an ultrasound room to look at the surviving babies and to make sure the procedure had “worked.” I knew this meant that the doctors would be looking at the other three babies to make sure they were no longer alive. When we went into the ultrasound room, I had such mixed emotions. I wanted to see the babies that were alive, it was the first time I would be looking at them. The excitement was tempered with feelings of sad- ness and guilt that there were also three babies that were now dead and that I would not be seeing. The tech showed us the babies and while I tried to focus on the live babies, I could see limbs of other babies on the screen. I tried my best not to focus on them. Now looking back, I wish so much I had focused on them more; after all, they were my babies too. Immediately following the ultrasound, the doctor came in and told us we were having a boy. We were not sure of the other baby’s sex because that baby was not genetically tested, but the one baby was definitely a boy. This news brought excitement and I had a sense that this was the beginning of something new. The reduction was behind us and we now had to focus on having two healthy babies, one of which would be a boy.

2 Perinatal Attachment and Loss 55

I felt guilty and sad about the loss of our five babies, but I tried my best to focus on the two healthy babies growing inside of me. I started talking to them and trying to feel like it was a “normal” pregnancy. We finally told people out- side of our family that we were having twins (which never really sat well with me, because in my mind they would always be septuplets. Calling them twins would be denying the existence of their five siblings, but what else were we to call them?). This also helped us to feel somewhat “normal” again. I continued to not feel great, slightly bleeding, running a temperature in the 99s, and hav- ing slight cramping in my pelvis/abdomen. I was told multiple times that all of this was normal.

A week and a half after the reduction, things changed and I began to feel very sick. My fever went up to 103 and would not come down. I went to the ER. When they checked the babies they were fine on ultrasound. They assumed I had a urinary tract infection (UTI), prescribed medication and sent me home. The same evening I began throwing up, my temperature was 104 and I was brought back to the hospital. Once again, the babies seemed fine. They believed I had some type of illness unrelated to the pregnancy. Many tests were run but nothing was found other than an elevated white count. They monitored me and attempted to keep my fever down for the next 4 days. The babies continually appeared healthy on ultrasound. There was talk of whether I had a uterine infection from the selective reduction but the doctors in the hospital did not believe so.

Eventually, I began to feel very ill and my white count was dropping pretty low. I decided to call the Selective Reduction doctor to get his opinion. His response was alarming. He felt with complete certainty that I had a uter- ine infection from the procedure. He told me that the pregnancy needed to be ended and that I risked going into septic shock. He called the doctors at the hospital and within a few hours (in the middle of the night) I had a team of nurses and doctors prepping for surgery.

The doctor who was going to complete the procedure came in my room to talk to me prior to my transport to the operating room. He explained why the procedure needed to be completed and that I was extremely ill. I told him that I understood. By that time, I felt so ill, I knew that something needed to be done. Over my 5 days in the hospital, I had begun to think that there was no way this pregnancy was ever going to be normal and was unsure that these two babies would ever make it to full term. Even though the decision to end the pregnancy happened quickly, it was not a shock to me.

The doctor completing the procedure was extremely kind; he pushed me in my wheel chair to the operating room himself. As he walked and I rode he said to me “Just remember, I’m doing this now so that I can deliver a healthy baby for you later.” Somehow those words comforted me. I also was com- forted by the fact that the septuplets were going to be together again. I knew that this was the only outcome for this pregnancy. There was no way I would be able to carry them to 24 weeks. I was so sick and not getting any better.

Immediately following the surgery, I felt a sense of relief for me and for the babies. We had all gone through so much over the previous 16 weeks and I felt comfort in knowing there was finally a resolution. I also felt comfort in knowing that the suffering was over for all of the babies and they were together again.

Grief and Loss Across the Lifespan56

The following months were extremely difficult. The grief over losing seven babies over the course of 16 weeks in varying ways was extremely dif- ficult to process. Most people outside of our family did not know what we really went through. Some people would express their condolences for the loss of our “twins” and others just would not acknowledge the loss at all. It was most difficult with our families, who knew the whole story. Most of them had no idea what to say, so did not say much of anything at all and carried on as if nothing had happened. This was so hurtful. Our lives were forever changed, yet others were acting as if nothing had happened because there were not vis- ible babies that were lost. For me and Rey, our babies were everything to us. We had gone through so much to have them and sacrificed our moral beliefs by doing things we never thought we would do, just to give two of them a chance at the best life possible. It just seemed that all of that was in vain.

For a very long time, I questioned the choices we made over the course of the pregnancy. Maybe I should have tried to have all of the babies; maybe I would have made it to viability with the five of them; the thing is, I will never know. It took a lot of time and therapy to fully process all of the feelings sur- rounding the losses we endured. Rey and I processed the losses differently and we learned that that was okay; we experienced it differently. In the end our marriage was intact, we found a deeper love for one another, and we moved through the grieving process differently but together.

We now have three living children, a set of identical twin girls and a sin- gleton little girl, all through natural pregnancies. I think about the septuplets regularly. They have shaped my life and my outlook on parenting most days. I still feel a sense of comfort in knowing my septuplets are together in heaven. I find solace in that. I consider myself a mother to 11 children (we had a mis- carriage following the septuplets and prior to becoming pregnant with our identical twins). I remember being in therapy right after we lost the septuplets and our therapist telling us that one day we will look back at the septuplets and it will be bittersweet. I could not imagine that ever happening, but now 7 years later, it is so true to me. It was a time filled with so much sadness and grief, but it was also my time with them.

SUMMARY

Even in the best of circumstances, maturational gains such as achieving pregnancy and getting ready to have a baby also entail losses of accustomed self-image, independence—even madcap ways. When experiences of pregnancy complication and/or pregnancy loss occur, the first loss is the loss of innocence. In a society where pregnancy complications and death are hidden, expectations are that every pregnancy goes well. The innocence that allows these expectations is lost when pregnancy is complicated in some way, quickly followed by the losses involved with managing fear, uncertainty, medical treatment, and concern for the health of oneself and one’s future child. There are no easy answers in these situations. Weighing one’s attachment to one’s potential baby against the possibilities of harms that could keep him or her

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from living a healthy, full life, as well as against the capabilities the mother and her support network provide, means that each situation will have a unique calculus. When there is a fetal demise, the parents lose the potential child and the growing attachment they had, but they also lose all of the hopes, dreams, and fantasies they experienced as they anticipated the birth of a new family member. Despite the fact that these losses are hidden from view and seldom acknowledged, losses at this time are some of the most potent as they occur before the bereaved have the chance to formulate memories to enable grieving rituals and active mourning. Interventions need to acknowledge and validate the loss or losses while supporting the healthy formation of families during this foundational stage.

DISCUSSION QUESTIONS

1. What are your own beliefs about the nature of an embryo or fetus and how do you believe this may inform grief work you might do with women after a pregnancy loss?

2. What are your beliefs about the challenges and benefits of raising a child with a developmental disability? Does the level of cognitive or physical intensity of challenge make a difference to your thoughts about raising the child?

3. If a friend revealed that she had experienced a recent miscarriage, how might your approach to her differ after having read this chapter?

59

THREE

Infancy, Toddlerhood, and Preschool

Ethan, at age 4, solemnly carried the small casket of Polly. He had gathered his friends and family together for the funeral of his semi-developed polliwog. Polly had developed back legs and the tail had dropped off, but then development stopped. Two days earlier, Polly had been found dead. Ethan had recently attended his grandfather’s funeral and wanted the same ritual for Polly. He asked his mother to engage the minister from their church and set the funeral date. He and his father dug a grave by the side of the house and his mother called friends’ mothers to be sure they were aware of the plans and willing to allow their children to participate.

The minister certainly was not going to preside over a tadpole funeral, so Ethan’s mom talked with a friend who had been a minister and he agreed to officiate. His wife wrote a poem in honor of Polly’s brief life. The little procession had reached the graveside and the minister had announced they were gathered to bury the mortal body of Polly when 5-year-old Christian piped up that Polly could not go to heaven because “animals don’t go to heaven—the Pope says so.” Debate among the children ensued until the three adults moved the funeral along. Ethan cried a bit (some tears genuine and some seemingly forced) and the group “bid adieu to Polly Wog.”

Several parents were in touch with Ethan’s mother over the next week to say that their children came home to talk with them about whether pets could go to heaven, and all were reassured that they could. The parents generally were happy to discuss death in the context of a pet death rather than the demise of a loved one. Ethan continued to include Polly in his prayers each night for several months, but he seemed happy to think that his grandfather was caring for Polly in heaven.

OBJECTIVES

After reading this chapter the reader will be able to:

■ Describe the psychosocial and biological development of humans from birth to approximately age 5.

■ Trace the ways cognitive developments affect children’s understanding of death and its subsequent impact on the child at different young ages.

■ Identify how parents and others grieve when a child dies who is not yet well integrated into community.

■ Analyze the maturational milestones that involve growth and yet entail losses as children move through infancy, toddlerhood, and into school.

Grief and Loss Across the Lifespan60

DEVELOPMENTAL STAGE: TRUST VERSUS MISTRUST AND AUTONOMY VERSUS SHAME

Infancy through the time a child typically enters kindergarten (usually age 5) involves tremendous change physically, cognitively, psychologically, and socially. Infants weigh around 7 pounds at birth and have little ability to care for themselves (other than to send dependency signals and hope their caregiv- ers are attuned). Erikson (1980) theorized that infants develop a schema based on whether they believe they will be cared for adequately and lovingly. They develop trust if their caregivers provide attuned, trustworthy caregiving, or mistrust if they are not well attuned. Recent neurobiological findings indicate that attuned caregiving in childhood is associated with being able to engage in trusting and caring relationships in the future, supporting Erikson’s theory (Siegel, 2012).

By the time children enter preschool or kindergarten, they typically weigh around 40 pounds and can walk, run, talk, and articulate requests for care. They move through Erikson’s stage of autonomy versus shame (1980) during which they learn to control bodily wastes and begin to gain control over themselves and their behavior. They can make friends, play, and begin to form current attachments as well as develop the template for relationship styles over their lifetime (Ainsworth, 1969; Ainsworth, 1982). They have not yet entered the broader world of school and adults who judge them. Instead, in ideal circumstances, they have parents and relatives who love them uncon- ditionally and help promote their development. Even under ideal circum- stances, infants, toddlers, and preschoolers experience maturational losses involved with growth.

Biological Development

Newborns depend on others for the care they need (nutrition, cleaning and hygiene, and stimulation to promote growth), but they are born with a surpris- ing number of reflexes that help them survive. These promote care from others while priming actions that promote motor skill development (Slaughter, 2014). The Moro reflex is elicited when a newborn’s head moves abruptly and the infant throws out the extremities and grasps in response, seemingly to prevent falls. Another reflex involves turning toward a soft stimulus on the cheek to grab a nipple for sustenance. The tight grasp a newborn exhibits when any- thing is placed in his or her grip is the endearing reflex that helps the infant hold on to something solid and elicit a bonding response from adults.

Newborns spend about 16 hours per day sleeping, but they sleep in shorter stretches than adults and new parents often feel sleep deprived. Sleep scientists traditionally use a five-hour span of sleep (midnight to 5 a.m.) to define “sleeping through the night” (Henderson, France, & Blampied, 2011), yet most parents disagree and worry about their infant’s and their own sleep health (Henderson, Motoi, & Blampied, 2013). As infants learn to self-sooth, they sustain longer periods of sleep, actually building the ability to self- regulate and fall back to sleep. The first 3 months are very labile, but sleep consolidates around 3 or 4 months and infants can generally sustain sleep for

3 Infancy, Toddlerhood, and Preschool 61

eight hours or so by 6 months. By preschool, children need to sustain sleep for about 10 hours to avoid impulsivity, obesity, and learning challenges (Jones, Owens, & Pham, 2013).

Humans are born with all of their sensory abilities, but some require more development and coordination than others. Vision is limited by newborns’ inability to focus beyond 11 inches. This promotes the stares of interest when held by a caregiver whose face is at the best point of focus. Other senses appear to be relatively intact at birth, but the infant requires experience with the world in order to make contextual sense of the stimuli. By 3 to 5 months of age, gen- erally, infants can manipulate objects in front of themselves (called midline behavior) because they have learned more control over their own stimulation.

By 5 years old, healthy children master control of most, if not all, of their bodily functions. They can run, skip, manipulate objects, and use words to express desires. They can bathe themselves, feed themselves, and generally provide basic self-care; they have a sense of autonomy (Erikson, 1980). Individual differences of “handedness” and interest in being more sedentary or more active are revealed more fully by this age.

Psychological Development

The physical development that underlies greater independence strongly influences the psychology of a growing child. Being nurtured in a secure and trustworthy environment in infancy sets the stage for an ability to feel safe in beginning explorations of the world (Mahler, Pine, & Bergman, 1975; Winnicott, 1965, 1953). Indeed, Winnicott (1965) was one of the first to artic- ulate the concept of the “good-enough mother” who adapts to the infant’s needs, but allows “optimum frustration.” She is not “perfect” and does not meet every infant or toddler desire. She allows the child to be frustrated and “fail” occasionally, within that child’s capacity, in order to allow him or her to develop new skills.

Winnicott’s thinking represents a critical transition from the Freudian idea that the mother is responsible for disturbances of the child’s psychologi- cal growth. Freudian theory implied that a mother must be perfectly attuned and informed about optimal ways to help the growing infant discharge drives. Winnicott (1965) believed instead that mothers need to “fail” to be perfectly attuned occasionally as this allows infants and toddlers to learn to self-soothe. He asserted that “good enough” parenting would promote good mental health. He articulated the concept of “transitional objects” that toddlers could use to maintain a symbol of the calming presence of the mother without hav- ing her actual presence. Transitional objects (such as a special blanket) allow the child to develop a sense of self separate from the mother, while still feeling the security of the mother’s presence (Winnicott, 1965).

Ainsworth, Blehar, Waters, and Wall (1978) asserted that patterns of abil- ity to tolerate separation from a primary caregiver set the template for future attachments. These patterns were defined as Secure, Insecure (with sub-types of anxious avoidant and anxious resistant), and Disorganized. These attach- ment styles are said to develop as a result of the mother’s (or caregiver’s) attunement and adequate care giving. Children from infancy to age 4 or 5 are

Grief and Loss Across the Lifespan62

seen as particularly vulnerable to the detrimental consequences of neglect and abuse because these attachment styles are developed and reinforced during this time and these styles become neurobiologically encoded (Siegel, 2012). Siegel (2012) asserts that toddlers’ and preschoolers’ budding implicit and explicit memory skills enable their ability to build relationship templates, empathy, and to develop the mind. Loss during this time would obviously tax the youngster’s ability to encode a sense of security in relationships.

Temperament is another characteristic that emerges between infancy and early childhood. Based on the degree of nine characteristics (activity level, rhythmicity, distractibility, approach/withdrawal, adaptability, attention span, intensity, responsiveness, and quality of mood), Thomas, Chess, and Birch (1970) discerned three categories of temperament: easy, slow to warm up, and difficult. These temperaments are noticed in the newborn nursery and seem to provide a behavioral template for the infant’s behavior stretching through early childhood. It seems they can be moderated in later childhood and adulthood only with overt effort.

These temperaments likely have a biological base, but are modified in the interaction with caregivers. For instance, a difficult and fussy infant will push away from the caregiver, will reject new foods, and will seldom sustain a full night’s sleep. A caregiver who is also of a difficult temperament will have a challenging time adjusting to this infant style and may have great difficulty providing attuned care, amplifying the child’s difficult temperament and set- ting the stage for poor attachment. In contrast, a patient, secure caregiver may help the infant feel safe, help contain distress, and gently but persistently pro- vide gradated new experiences without becoming angry and loud with the child. This allows the child to desensitize, learn to accept help in self-soothing, and develop strategies to cope with transitions.

Some readers will notice that Piaget’s theory of sensory-motor intelli- gence (1954) and the preoperational stage are missing from this discussion. Many studies cast doubt on whether children in toddlerhood to preschool really are as egocentric and concrete as Piaget suggested (Rosengren et al., 2014). The ability to understand the finality of death, its universality and irre- versibility, and the idea that the body ceases to function at death are all con- cepts necessary to understanding death (Speece & Brent, 1996). Piaget would conclude that youngsters would not be able to understand these concepts, yet empirical work shows that they do (Rosengren et al., 2014). Children as young as 4 are able to talk about death (of a person, dog, and plant) in ways that indicate that they understand its irreversibility and finality as well as the social norms about sadness (e.g., that plants do not elicit sadness but dogs and people do) (Rosengren et al., 2014).

Social Development

The development of language ability is another major accomplishment of the time from birth to entry into school. Language opens other capaci- ties such as imagination, play, memory, empathy, and the beginnings of symbolic  thought. Babbling and vocalization combine with gestures and pointing  to lead the way toward development of communicative language

3 Infancy, Toddlerhood, and Preschool 63

(Iverson &  Goldin-Meadow,  2005). Neuroscience suggests that infants begin to process  the language they are hearing long before they can speak and that this lays down the pattern for exploring language (Dehaene-Lambertz, Hertz-Pannier, & Dubois, 2006). The primacy of language (signed or vocal) is clearly a major factor in the ability to interact socially.

From infancy through early childhood, the family (however, constituted in that child’s environment) ideally creates social interaction that both pro- motes infant development and allows development of the mind that will serve that individual over a lifetime (Siegel, 2012). Even when socializa- tion into customary social norms has not been successful, interventions to repair the quality of the parent-child relationship appear to improve the child’s ability to interact acceptably, as when aggressive children become less so after improved parenting (Granic, O’Hara, Pepler, & Lewis, 2007). Research shows that even a brief antenatal intervention to teach parents how to adapt to and nurture their new baby can have positive impacts as  the  child  moves  through  toddlerhood (www.alphagalileo.org/ViewItem .aspx?ItemId=145288&CultureCode=en).

When parents are not emotionally available in early childhood (e.g., due to alcoholism, depression, emotional distancing, or substance use), children exhibit less ability to emotionally self-regulate and exhibit more externalizing behaviors upon entrance to school (Eiden, Edwards, & Leonard, 2007). The converse is true as well: When children receive attuned caregiving, they exhibit more empathy, eagerness to perform well, and prosocial behavior (Siegel, 2012). When parents guide children to identify emotions, regulate them appro- priately, and use language, they are better prepared to be successful in school (Denham et al., 2012). These same skills, together with socialization into reli- gious and other community norms, help frame children’s understanding of death and the rituals connected with it (Rosengren et al., 2014).

Children inevitably are exposed to death in the natural and social worlds around them. Interestingly enough, adults often have more difficulty coping with discussions of the subject than do the children (ages 3–6) (Rosengren et al., 2014). Indeed, when it comes to teaching young children about death, many adults hold paradoxical views. They believe they must shield young children from death while at the same recognizing that youngsters need guidance to process the meaning of it (Rosengren et al., 2014). This contradiction seems to persist even though clinicians, teachers, and death educators all agree that children benefit from direct, clear communication about death. When design- ing research on socialization processes related to death, one team of investiga- tors found that even their Institutional Review Board (the ethical oversight board for research) required major modifications due to its members’ belief that young children need preparation and support to answer hypothetical questions about death (Rosengren et al., 2014).

LOSSES EXPERIENCED IN INFANCY AND EARLY CHILDHOOD

Infants’ and toddlers’ experiences are difficult to know, but the death of a caregiver has an obvious negative impact. Development is a primary factor: Infants under about 6 months cope relatively well as long as their care routines

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and attuned caregiving continue (Coates & Gaensbauer, 2009), whereas older children have more difficulty coping. Parental separations due to military deployment provide information about children’s responses to separation from, and loss of, loved ones. Infants and preschoolers have little sense of time; past and present seem indistinguishable for most toddlers. Yet, separa- tions require a sense of past (when the loved one was here), a sense of pres- ent (when the loved one is missing) and a sense of future (when the loved one will return). Time sense evolves in tandem with vocabulary to help the toddler understand it, so until they can use such language and understand time concepts, the separation of deployment (or illness) makes it challenging for a toddler to understand separations from parents (Paley, Lester, & Mogil, 2013). Similarly, when infants’ or preverbal childrens’ beloved caregiver falls ill and/or dies abruptly, they have no language with which to process this loss and it appears unlikely that they have any concept of death to assist them in understanding their feelings of loss. Developing language skills enable better understanding of complex emotional experiences brought about by separation or death.

Other empirical findings come from the “September 11, 2001, Mothers, Infants, and Young Children Project” that studies families in which the father died on September 11, 2001. The surviving parent’s degree of initial and ongo- ing distress and her ability to cope were shown to mediate infants’, toddlers’, and preschoolers’ grief responses (Markese, 2011). When a caregiver dies, children in this age group are more likely to experience parent–child conflict, behavioral problems, and externalizing behaviors as they grow (Markese, 2011). The most important intervention for these young children is to assist the primary caregiver to remain attuned and responsive to the child and to provide support and respite to enable that caregiver’s optimal functioning.

Death of a Caregiver

Certainly the most detrimental loss a youngster may experience is the actual death of the primary caregiver. The reading by Chris Michael (following the Emerging Adults chapter) exemplifies how bereaved preverbal children have difficulty as they grow finding words for the emotions and other experiences they have after the death of a caregiver. After the loss of his father at age 3, he still struggled in young adulthood to find the emotional vocabulary for his loss. This is common when losses are not “revisited” with the child’s growing emotional vocabulary and ability to reason at higher levels of abstraction.

There is general consensus that children under age 2 are not able to understand death, particularly its finality, though they do experience sepa- ration anxiety and exhibit reactions of protest and despair as observed by Bowlby (1998, 2000). Research consistently associates parental death with higher levels of psychopathology in bereaved children as they grow, though more recent scholarship indicates that the responsiveness of the child’s remaining caregiver and that person’s ability to provide safe and consis- tent care is a better predictor of resilience or psychopathology than the mere event of a parental death (Christ, 2000; Hope & Hodge, 2006; Silverman & Worden, 2006).

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It is unclear whether a child less than 3 years old processes death as anything other than separation anxiety that is not relieved by crying for the caregiver’s return. Responses tend to take the form of bodily symptoms (stomach aches) and regressions to earlier states of functioning. Therefore, the recommendations for care of very young children who experience a significant death loss include assuring that there is a caregiver to provide attuned, nurtur- ing, and consistent care (despite the caregiver’s own grief), keep the infant’s/ toddler’s routine predictable and consistent, and allow for regression such as bedwetting and refusal to feed oneself (Hames, 2003; Hope & Hodge, 2006; Willis, 2002). Despite the belief that children under two or three cannot con- ceptualize death, they are grieving intensely, albeit in a manner different from adults. Crenshaw (2002) clearly identifies adults’ tendency to disenfranchise children’s grief in detrimental ways by ignoring, minimizing, or otherwise not recognizing this different manner of expression as true grief and mourning. This is dangerous for infants and young toddlers; reassurance and nurture is necessary for them to move through their response and continue to thrive.

As the toddler grows, concepts of death evolve (Christ, 2000). Children who are 4 to 5 years of age understand that death involves the deceased’s separation from  living people and a cessation of breathing and heartbeat. They may have little sense of the permanence of death (www.cc.nih.gov/ccc/patient_education/ pepubs/childdeath.pdf). One study of children 3 to 5 years old found that their struggle to understand the irreversibility of death led to “befuddlement” (Christ, 2000, p.  75), intensified reactions to other separations, and repetitious questions about the location and condition of the deceased. Further, a sense of interchange- ability or a sense that the lost one just needs to be replaced with another sibling/ mother/father/grandparent adds to the challenge of the surviving parent’s need to support, nurture and respond to the child while she or he asks disturbing questions (Christ, 2000). Yet other research indicates that these questions, when answered directly, honestly and clearly, allow children to make meaning using idiosyncratic blends of biological and religious explanations (Rosengren et al., 2014).

Magical thinking is common at this stage of development and children may believe their angry thoughts caused the death of the deceased (American Academy of Pediatrics, 2000). Clear explanations grounded in concrete realities provide important ways for children to begin to understand death. Attendance at funerals in order to see the body is often a positive strategy as long as the child can be protected from adults’ uncontrolled outbursts of emo- tion that they may find more disturbing than the death itself (Willis, 2002). Preparing the child, answering questions, and providing for the child to be with a trusted adult not severely affected by the death are all useful to assist 3- to 5-year-olds through the mourning process.

A fundamental aspect of loss in childhood is that the child will need to “rework” the loss at each stage of development. Children can only understand death within the cognitive development (and language capability) they have, yet must live with the loss their entire lives. As they develop emotional lan- guage skills, abstract reasoning, ability to anticipate the future, and so forth, they will need to reassess and grieve the loss through their new perceptual abilities, sometimes with professional help. A loss in early childhood requires more “reworking” than a later loss as more development takes place on the way to adult understandings.

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Nondeath Losses

Loss of Caregiving

The literature on infants and toddlers emphasizes the importance of the primary caregiver (generally the mother) to healthy development. During this stage, the infant or toddler’s whole life is bound by the care and stimulation she or he receives from caregivers; therefore, the most traumatic loss endured at this stage is the death of a primary caregiver and/or parent. Even without a death, the infant/toddler is likely to experience loss of the caregiver in both normal developmental ways and in more dramatic ways. Certainly, optimal frustration, as Winnicott (1965) discussed it, amounts to a temporary loss of the caregiver; the felt need/desire of the child is not met immediately and she or he feels abandoned. This is a normal and healthy experience after about 4 to 6 months of age. Because infants have not yet grasped “object constancy” (that people continue to exist even if the baby does not see them), when the mother is gone, the baby feels (briefly) as if the mother is lost forever. This same phenomenon also allows him or her to adapt to the surroundings of the present moment (after protest, an infant will eventually adapt to the per- son who is providing care because they have “forgotten” their caregiver). Yet, there is great joy when the mother returns. As the infant ages, object constancy is such that the toddler knows mother still exists (somewhere) and protests and yearning may last longer.

Temporarily losing care is a normal, maturational loss that contributes to the development of the child. As she or he begins to recognize that the caregiver is sometimes absent, but returns and generally provides attuned care, object constancy grows and a sense of security develops. These types of maturational loss occur within a secure and trustworthy relationship and promote develop- ment. Development is threatened when the separation occurs in ways that are beyond the youngster’s ability to cope, (for instance, when a parent is drug addicted and unable to be engaged predictably) or where this loss is chronic (parental depression means little caregiving extended to the youngster).

During the critical first 3 months of life, children need a caretaker attuned to their physical and emotional state who not only provides care, but who can soothe them and verbally reflect their experiences. Infants born to mothers experiencing major depressive disorder and/or postpartum depression may not receive the finely attuned care newborns need. Indeed, children born to depressed mothers may never experience the sense of total care and attune- ment that infants ideally receive to allow them to develop secure attachments and a sense of trust in the world. Ideally the father or other surrogate caregiver would meet the needs of the infant at this point. Often, other adults believe that the mother’s mere physical presence is enough to keep herself and her baby safe and she is deemed capable of managing her own and the baby’s care. This can lead to tragic outcomes when postpartum depression occasionally evolves into postpartum psychosis without appropriate supports in place (Abrams & Curran, 2007; www.webmd.com/depression/postpartum-depression).

Parental depression has ramifications beyond infancy and toddler- hood. Women with early onset depression are likely to have children with dysregulated emotional patterns at age 4, decreased perceived competence

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ratings at age 5, and decreased social acceptance when entering school (Maughan, Cicchetti, Toth, & Rogosch, 2007). Most women’s depressive symptoms include an externalized locus of control and more difficulty man- aging parenting stress. These symptoms may act as mediators to either lax or over-reactive parenting that meets attachment and attunement needs inconsistently. In turn, this places children at risk for poor attachment, a sense of mistrust, and a defensive detachment (Gerdes, et al., 2007). There is strong and consistent evidence that the caregiver ’s attunement and emotional care assist the infant to develop the neurobiological substrate that enables him or her to develop attachments and the ability to learn self-soothing and affect regulation (Applegate & Shapiro, 2005; Siegel, 2012). Put the other way around, when care is unavailable, these neurobiological substrates in the brain have less opportunity to develop and this negatively affects the infant’s ability to engage fully in other attachments and to develop affect regulation (Shapiro, Shapiro, & Paret, 2001).

When an infant or preschooler experiences the loss of a caregiver due to parental depression, removal from parental care, or hospitalization, they experience loss that we do not view as normal maturational developmental loss. However, the challenges of such loss are rarely recognized. While the youngster receives care for basic needs such as nutrition, shelter, and hygiene, often little attention is paid to the need for an attuned and consistent caregiver. In highlighting the ramifications of such loss, we aim to validate it so that remediation may become customary.

Loss of a Child’s Own Health

Finally, young children may experience the loss of their own health. Young children with life-threatening illnesses often have such intense medical care experiences that they and their families are caught in the moment–to-moment experiences of treatment. Hospitals that provide care for infants soon after birth and in toddlerhood are now much more attuned to the needs of children this age to maintain and continue to develop attachment relationships with their caregivers. They have embraced family-centered care models that encourage parents to be at the baby’s bedside (www.ipfcc.org/faq.html). Nevertheless, babies in institutional care or in foster care experience a separa- tion from their primary caregiver. Under such circumstances, it is important for social workers and others to promote attachments to consistent and available caregivers.

Families often want to avoid discussion of their toddler’s possible death, and the uncomprehending child is focused on the pain, separation from family, and/or reactions to their perceptions of their caregivers’ stress. Few studies delineate the experience of children coping with life-threatening ill- ness at this young age (Bluebond-Langner, 1978; Schwartz & Drotar, 2006). With more awareness of the need for open discussion and the fact that more children experience chronic, life-threatening illness, even the resource WebMD has advice for parents about how to handle children’s questions when they have life-threatening illness (www.webmd.com/palliative-care/ talking_to_children_about_death).

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LOSS OF AN INDIVIDUAL AT THIS AGE BY PARENTS

Death of an Infant, Toddler, or Preschooler

The death of a child is always experienced as a life-changing event, usually as a trauma (Klass, 2005; Rando, 1993). Young children are often seen as the most physically vulnerable humans, inspiring a high degree of responsibility for providing care to keep the child alive, the purported evolutionary reason for attachment behaviors (Bowlby, 1998). This means that parents typically feel guilt for not providing care that enables the youngster’s survival.

Early deaths are complicated by the fact that few outside the family knew the child yet, particularly when the child dies in infancy. The ability of mem- ory to sustain and comfort is limited by the child’s short life. Parents must also mourn their lost hopes and dreams for the future the child never had.

Klass (2005) describes the importance of the social world sharing in the parents’ grief and acknowledging the parents’ loss, yet this is precisely what is often limited, particularly when the infant is quite young. This seems to mirror a myth that the connection a parent feels is dependent on the length of the child’s life. This myth may comfort those who remain uninformed and distant from the bereaved parents, but the reality is that parents grieve deeply and intensely regardless of the age of the child (Rando, 1993). Klass found that bereaved parents moved through periods he called “into their grief,” “well along in their grief,” and “resolved as much as it will be.” This last term does not imply (as words like closure and acceptance do) that the parent will “move on” and forget or willingly accept what has happened, neither of which is possible. Often, grieving itself is a comfort for parents as it aids their contin- ued connection to their deceased child. Parents wonder if continuing with their own lives as usual is disloyal to the memory of their child (Klass, 2005). Parents often maintain the bond by memorializing the deceased child through participation in groups like Compassionate Friends or by promoting legisla- tion related to the child’s death (e.g., Megan’s Law for Megan Kanka) or start- ing a charity in the child’s name (Alex’s Lemonade for Alexandra [Alex] Scott). Parents find many ways to keep the bond active (Klass et al., 1996).

Sometimes children die in accidents that result from tragic oversights. Infants and toddlers occasionally die as a result of being left in car seats in hot cars, toddlers are run over by the family car, or die in an accident in the home. Parents feel intense guilt and have trouble with meaning-making when their child of any age dies from disease, accident, and other uncontrollable events (Lichtenthal et al., 2013); we can speculate that when death results from some- thing that can be imagined as preventable, parents will have an even more difficult time finding a way to make meaning and to mourn.

Loss of the Idealized Child

The bond with a baby starts long before delivery and parents develop dreams about how they believe their baby will look, act, and progress (Diamond, Diamond, & Jaffe, 2001). The loss of the idealized child is part of nearly every parent’s experience as they adapt to the child who has been born in contrast to the one envisioned prior to birth. Although seldom recognized as a loss, even

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factors such as whether the infant has hair or is bald can trigger some mourn- ing for the idealized child. When a child is born with developmental delays, congenital or other anomalies, this loss is even greater.

Parents who receive such news must mourn the dream child while also mourning the loss of the typical child. Faust Piro describes this experience in the 2009 edition of this text. Aside from the necessity of making medical appointments to discover diagnoses and provide treatments, parents must also cope with the social ramifications as family and acquaintances learn about the child’s condition/s. Further, the self-image of the parent, particularly the mother, is often affected as she wonders why she “failed” to bring a healthy child to birth and wonders if there was some reason for the impairment. The stigma of disability (Goffman, 1963) is not socially just, but it exists nonethe- less and mothers often experience some of the same stigma (Ladd-Taylor & Umansky, 1998). When the discrepancies between reality and what was expected become clear, adjusting to the child’s condition and bonding with the child she has, rather than the envisioned one, requires a degree of mourn- ing for the idealized infant.

Most parents experience the loss of the idealized child even if the actual child is healthy and robust. As Greif’s reading at the end of this chapter clari- fies, parents often picture their children as athletic or attractive or having qual- ities they value that are not always in evidence at birth or as the child grows. When this loss is recognized, it can be acknowledged and it can lose its power to interrupt the connection between parent and child.

TYPICAL AND MATURATIONAL LOSSES EXPERIENCED AT THIS AGE

Birth and Gradual Loss of Complete Care

Judith Viorst described what is almost certainly a universal experience:

We begin life with loss. We are cast from the womb without an apart- ment, a charge plate, a job or a car. We are sucking, sobbing, clinging, and helpless babies. Our mother interposes herself between us and the world, protecting us from overwhelming anxiety. We shall have no greater need than this need for our mother. (Viorst, 1986, p. 9)

After what we might call original loss, infancy and toddlerhood are defined by the optimal frustration experienced as the mother gently pulls away and allows the child to develop self-soothing and self-entertainment skills. This necessarily involves losing the company and total security she provided to that point. Even as the toddler moves into early childhood, there are often maturational losses such as when behaviors once deemed cute (putting food in one’s hair or suddenly sitting down and refusing to move) are no longer tolerated and can actually anger adults.

In short, aging from infancy through the beginning of the school years includes many small maturational losses as one is expected to self-soothe, toilet train, begin to provide for one’s own hygiene, pick up toys and take

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on responsibilities in the home, and be held responsible for one’s behavior. Although few recognize these many small losses as worthy of mourning, it may be surmised that the steady accumulation of these losses contributes to the frustrations and temper tantrums of toddlers and preschoolers. When par- ents are sensitized to these losses and learn to help interpret them to their children (“Now that you are a big girl, we are not going to laugh when you act that way”), it helps the child recognize the changes in ways that allow them to process the losses more easily.

Birth of a Sibling

Another typical maturational loss that deserves mention is the abrupt loss of the caregiver’s attention at the time of a sibling’s birth. The child (hopefully) has been the “apple of the parent’s eye” to that point and has received undivided attention and care. When a sibling is born, the infant or toddler is abruptly moved to the side while family members and friends come to fawn over and bring gifts to the new baby. The older sibling may have been looking forward to having a brother or sister, only to experience a new wish that the baby would disappear. Reactions to this type of loss sometimes include attempts to get parental attention with poor behavior, developmental regressions, or overt aggression toward the new baby and others. Providing reassurance of care and nurture is critical to helping the child process the grief of losing the parents’ sole attention and finding ways to accept the new baby (Faber & Mazlish, 1998).

READINGS

First Time Dads

Geoffrey L. Greif

Geoffrey L. Greif, PhD, LCSW-C, is a professor at University of Maryland School of Social Work. ggreif@ssw.umaryland.edu

Parents have to separate from their children at some point. For one father, a memorable form of separation began when he could no longer bring his tod- dler daughter into the locker room to change her out of her wet bathing suit because some men complained about a girl in the men’s locker room. A boy would not have presented the same conflict for them, he assumed. That required him to change her in a more public area or to prevail upon a trustworthy look- ing woman to assist his daughter in the women’s locker room. He wondered if women would have complained if a mother changed her toddler son in their locker room. It reminded him that fatherhood was different from motherhood.

A man arguably reaches adulthood when he becomes a father for the first time and has ushered the next generation into the world. This transition can be an exciting time of life and present him with a number of challenges

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if he had envisioned himself as footloose and fancy-free. Of course, not all births are planned or wanted and many nonmarital relationships do not sur- vive until the birth of the child or until the child’s second birthday. The focus of this reading will be on the father who is in a marriage or partnership where the pregnancy was planned.

The Involved Father

Fatherhood represents a profound shift in self-concept for many men. Such shifts are marked by a new awareness of one’s own upbringing, a loss of free- dom, a mourning of a loss of the idealized child, the potential loss of friends, and a shift in the spouse/partner relationship in terms of both intimacy and working together to parent.

For fathers with a healthy attachment to their own father, the birth can ener- gize that relationship. As the new father interacts with his child, memories of his own upbringing may return and a sense of generativity, where the father fits in his own family’s legacy, may be engendered. As the father rolls a ball to a tod- dler, he may remember playing catch with his own father. If these are positive memories, they will reinforce the father’s comfort with his parenting role. But if the father’s father was absent, inconsistent, or punitive, interacting with his child may raise ambivalent feelings in the new father and cause him to distance him- self or become tense in his childrearing. Some fathers want to be more involved with their child than their father was with them but, without a role model, may not be sure how to relate to his child in a loving way (see, e.g., Greif, 2014).

Some fathers with whom I have spoken fear they will not attach to their child to the extent they should. This could be the result of an inconsistent rela- tionship with a father or a strained relationship with the mother, who may be seen as an extension of the child. Yet it may also be a manifestation of the nor- mal fears some parents have about being able to properly care for a newborn or as a result of their socialization about the father’s role.

Not only does the new father carry his father’s image, he may also have a preconceived view of what manhood/fatherhood is. Some men are socialized with a hypermasculine image that is constructed by culture, family of origin or orientation, and one’s own reading of societal dictates about what a man’s role should be. Such an image may include a certain amount of freedom to come and go if a friend is in need or a job needs to be completed. Others are socialized with a provider/breadwinner role in which the father is dedicated to his fam- ily and fulfills his role by bringing in the bulk of the income while the mother takes responsibility for hands-on childrearing. These notions about the father’s role may conflict with a man feeling good about himself when feeding an infant, changing diapers, or pushing a stroller in the mall. Yet these are common and shared activities in many of today’s families where women and men occupy more equal roles. As a result, as childcare needs arise (and if the mother earns close to or more than his salary), the father may be unsure how to share in the parenting of the child with the mother and feel he is losing part of his identity as a man.

A father’s sense of identity, especially if he is a “take charge” type of guy, may further erode as his child grows older. He may believe that toddlers obey their parents (especially if he believes he obeyed his) and not understand that,

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with young children, rule setting is more serpentine than straightforward. Without a sound knowledge of normal childhood behavior, food throwing by a toddler may be interpreted as defiance, rather than as experimentation or play. As a result, he may feel less competent in his role if his child does not obey him. Difficulties managing behavior can reignite the father’s sense of his own ambivalence about being a father and further distance him from his child.

While the inability to pick up and go spontaneously becomes more circum- scribed with the birth of the child, at toddlerhood the demands of childrearing are exponentially increased. The father raising a toddler has made it through the first year and is now corralling a more mobile tornado that is running through the home, climbing up and down stairs, and putting everything in her or his mouth. The father can no longer put a child in one place and expect her to stay. A stronger personality is emerging with language and the ability to say no. The mother may become the preferred parent, making the father who is trying to connect with his child feel marginalized. The increased parenting demands and the mother preference can add to a father’s ambivalence about parenthood and sense of loss.

Another loss may occur if the child’s emerging personhood separates the father from friends without children who are not interested in child- centric activities. By the time of preschool, there may even be a separation from friends with children. The child’s developing personality and preferences may result in the loss of friendships. Much of what men do with other men revolves around sports, either as a spectator or a participant (Greif, 2009). At 1 year of age, it may no longer be possible to bring a child in a stroller or car seat to a friend’s house to watch a football game. The space has to be child-proofed and the children actively entertained. By preschool, friends may get further separated if a young child’s interest in gymnastics separates that father from the father whose child prefers dance. At some point, their children’s interests, and not theirs, dictate how they spend their time. While children’s burgeoning interests open the possibility of making new friends, the potential loss of old friends cannot be overlooked.

One highly involved father commented that his child’s entering pre- school was a loss for him in terms of who would be taking care of his son. Strongly attached to his son, now the son would form new relationships with other adults and be away from home more hours of the day. For this father, it was the beginning of a new stage that not only took his son away from him but exposed the son to the vagaries of the world from which his father could personally no longer protect him.

A loss can come in another arena. The child may not be developing as the father visualized. He or she may be less responsive, athletic, verbal, or attrac- tive than the father’s idealized version. Few parents end up believing they are raising the perfect child; they have to adapt their expectations as a child devel- ops. This loss, which can be particularly acute if there are organic concerns, is a common feature of parenthood.

Related to this loss of the idealized child, if the father is competitive he may transfer his competitiveness to his child, who is his “other,” an extension of himself. For example, he might want his child to be better than his sibling’s child and hope to gain greater approval from their parents. He would experi- ence a loss then if his child came up short. He (and his child) might also be in

3 Infancy, Toddlerhood, and Preschool 73

competition with a friend and his child. This competition may first present in toddlerhood with whose child walks or talks first. By the time the child goes off to preschool, competition may become more florid as there are a greater variety of activities around which to compete. If the child falls short, the father may feel he is falling short and may have a more difficult time interacting affectionately and supportively with his child.

Finally, adapting to life with a young child entails modifying the intimate relationship with the other parent. The loss of sexual spontaneity, sexual fre- quency, and sexual energy can be a drag on both parents. Men often consider their wives/partners their closest confidants. With a growing child, finding time to talk and be intimate can be greatly circumscribed. Parents quickly learn that freedom from the demands of child rearing will be many years away. If there are fundamental differences about child rearing practices, parents may experience more distance from each other.

Interventions

Many of these losses can be conceptualized as related to two smaller developmental stages—the arrival of the first child and the entrance of the first child into a school program—within a typical stage of the family life cycle—the family with young children (McGoldrick & Carter, 1982). In this stage, families have to adapt to having young children while adjusting the marital system, taking on new parental roles, and realigning relationships with extended fam- ily members (p. 176). To that extent, any losses the father is experiencing can be seen as normal struggles and related, in part, to the way men are socialized in our society.

Often, losses related to the demands of fathering may show up in therapy as couple issues. All couples have to negotiate when to spend time together and when to have time for family, individual friends, other couples, as well as time for each partner to be alone. Presenting problems for couples may be related to the division of time, childrearing responsibilities, lack of intimacy, and differences around finances, especially how discretionary income is spent. Loss is a central theme running through these problems.

Helping the father identifies and reflects on the turn his life has taken and what his expectations are for his marriage/relationship and childrearing is beneficial. While it is easy to recommend a fathering group as another venue in which to explore these issues, most communities do not offer such a service. Books or essays about fathering and its demands can be helpful, but reading may not be something many men want to pursue. Popular movies may be another option for discussing men’s issues as many films about men and par- enthood have been produced, including I Love You, Man with Paul Rudd and classics, like Kramer vs. Kramer and To Kill a Mockingbird, both of which feature single fathers in nurturing roles. Normalizing the issues discussed above may be one of the cornerstones in work with the couple relationship.

These losses are not always easily remedied. Childrearing demands can go on for years; filling the void of absence from one’s own father requires ther- apeutic work or a relationship with a substitute father; mourning the loss of the idealized child may never get fully resolved; finding alone time with one’s

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significant other is always a challenge. Even so, these are all part of entering adulthood, confronting life’s ambiguities, celebrating a child’s increasing autonomy and burgeoning identity, and learning how to balance one’s own needs with the needs of loved ones.

Maternal Depression and Early Infant Development: Risks for Relational Deprivation and Loss

Janet Shapiro

Janet Shapiro is a professor at Bryn Mawr College Graduate School of Social Work and Social Research. She is director of the Center for Child and Family Wellbeing and was an early social work pioneer in understanding the neurobiology of attachment and infancy.

Maternal depression can lead to experiences of relational disruption and loss in caregiving environment of infants and young children. The Center on the Developing Child at Harvard University (2009) estimated that 10% to 20% of mothers will experience depression during the first year of their child’s life and the incidence rate is higher for women experiencing a range of other psycho- social stressors. Thus, assessment and intervention with mothers experiencing depression either prenatally or postpartum are important areas of practice and in particular, for psychosocially vulnerable families.

For developing infants, relationships with primary caregivers are a primary “active ingredient” in the well-being of infants and young children (National Scientific Council on the Developing Child, 2007). Research on attach- ment has long shown that the quality of parent-infant attachment is related to multiple developmental competencies that emerge over time (Ainsworth, et al., 1978). For the developing infant, a “secure” attachment is supported by ongoing experience with emotionally available and empathically attuned caregivers who are able to care for the infant in ways that support positive developmental outcomes and emerging indicators of infant mental health (Schore, 2001). The developmental benefit of a “secure” attachment relation- ship becomes evident over time in the developing child’s capacity to expe- rience and regulate a range of affect, to form relationships infused with an expectation of trust and felt security, and an ability to develop age- appropriate capacities for self-understanding and understanding of others (Siegel, 2012). Recent research in the cognitive neurosciences provides an additional lens on the importance of early caregiving relationships by describing how the quality of early interactions affects brain development and, in particular, the developing child’s stress-response system, which is critical to their long-term health and well-being and capacity to sustain resilience in the face of stress and adversity (Gunnar, 2000).

For many families, pregnancy and early parenthood is a time of tremendous stress in ways that can impede even a well-intentioned caregiver’s capacity to foster secure attachment and the child’s experience of feeling “ psychologically held.” Lack of access to consistent and empathically attuned relational care constitutes deprivation for the infant and young child because it poses great risk to their developmental well-being.

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Why are some parents better able to provide empathic care that meets the developmental needs of the infant/child? Factors such as social isolation, poverty, and stress can combine with factors such as lack of knowledge of child development and parental mental health challenges such as maternal depression to inhibit the caregiver’s ability to accurately perceive and respond to the emotional, social, and physical needs of the developing child thereby creating a context of risk and vulnerability for the child. These factors limit the caregiver’s ability for “reflective function,” or the capacity of the parent to “understand that her own or another’s behaviors are linked in meaning- ful, predictable ways to underlying mental states, to feelings, wishes, thought and desires (Slade, 2002, p. 11). Sensitive, attuned, reflective parenting helps the child to “make meaning of feelings and internal experience and states of psychophysiological arousal associated with feelings without becoming over- whelmed and shutting down” (Slade, 2002, p. 11).

Affective disturbances, such as maternal depression, have been shown to increase vulnerability in the developing child (Tronick & Reck, 2009). Children of depressed mothers have higher rates of developmental vulnerabil- ity as indexed by impairment with the regulation of behavior and attention, increased rates of childhood depression and higher rates of other externaliz- ing and internalizing disorders (Center on the Developing Child at Harvard University, 2009). Longitudinal studies have also shown that children of depressed mothers have lower rates of secure attachment, less well-developed social skills and more difficulties with school readiness and peer relationships (Ashman, Dawson, & Panagiotides, 2008).

Vignette One: Maternal Depression and Infant Withdrawal

Jennie is a 5-month-old infant, born somewhat small for her gestational age into an economically stressed family. Jennie appears small for her age but more importantly, somewhat withdrawn from human interaction, lethargic, and not socially responsive to cues from her family members. Jennie’s mother also has low energy levels, seems disinterested in interpersonal interaction, and speaks very little. Jennie’s mother says that she is the “best baby” because she can stay “by herself” for “hours at a time” in her crib and while there, makes “no noise.”

Vignette Two: Maternal Depression and Infant Anxiety

Eddie is a physically healthy, 12-month-old infant of a depressed mother. Born full term and neurologically intact, Eddie showed no signs of developmental delay or impairment in the first 6 months of life. Recently, Eddie has shown a marked decrease in human interaction and playing with toys. When observed, Eddie is quiet, making few movements and not exploring toys; he is preoc- cupied with searching his mother’s face. Eddie’s mother has been clinically depressed for the past 6 months following episodes of intense marital conflict now culminating in an impending divorce. Eddie’s mom has become preoc- cupied and less available for interaction with Eddie, labile in her moods and affective expression. Eddie, in turn, is more withdrawn and shows little expec- tation for shared positive affect with his mother. Eddie has begun to show signs of anticipatory anxiety as he stares at his mother’s often flat or blank

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facial expression. Eddie shows little ability to self-soothe, an inability to sus- tain focus on play, a worried facial expression, and muted affect and is not easily calmed or soothed.

Maternal Depression and Risks to the Caregiving Environment

Maternal depression is a broad term that includes depression that occurs pre- natally or during gestation (Gurian, 2003). Maternal depression may impact the mother’s ability to utilize prenatal care or to provide self-care during pregnancy, and can vary in type and degree to include a period of “postpartum blues” as well as the more serious condition of postpartum depression. Postpartum psy- chosis, though rare, can also occur. In addition, episodes of maternal depression can vary with regard to their timing, severity, and duration, and may be either single episodes or recurring in nature. Factors such as the many physiological and hormonal changes occurring during and after pregnancy, the severity of psychosocial stressors experienced, a lack of access to social support, and a pre- existing history of depression and/or unresolved experiences of loss and grief as are associated with a higher likelihood of experiencing maternal depression.

Impact of Maternal Depression on Infant and Early Childhood Development

Prenatally, infants of depressed mothers are exposed to a higher level of stress chemicals, which alters infants’ immunological systems and prenatal growth patterns. Infants of depressed mothers are more difficult to soothe, showing greater levels of distress, and often have deficits in their ability to sustain gaze and interaction. Toddlers of depressed mothers display more behavioral prob- lems, less capacity for emotional regulation and delays in language devel- opment. During childhood and adolescence, children of depressed mothers show greater difficulty with peer relationships, learning readiness, and both internalizing and externalizing disorders (Embry & Dawson, 2002).

Maternal depression has been described as a condition of “double jeop- ardy” in that it simultaneously poses risks to both mother and child. The symptoms of maternal depression interfere with the parental ability to engage in contingently responsive, or “serve and return interactions” (Center on the Developing Child, 2009). These “serve and return” interactions are infused with an attuned understanding of the needs of the developing infant and the internal world of the child. Developmental neuroscience research has shown this type of interaction to be particularly important to the development of attachment as well as infant brain development; lack of attuned caregiving is associated with impairment of the stress response system and other indicators of social and emotional competence (Gunnar, 2000).

Mothers who are depressed are less likely to respond to infant cues in ways that reflect an accurate appraisal of the infant’s needs. Whether the maternal behavior is over-stimulating (as in intrusive interactions) or under- stimulating (as in interaction characterized by withdrawal and neglect), the infant is neg- atively affected (Embry & Dawson, 2002). Both patterns are associated with high levels of infant psychophysiological arousal and anxiety that can lead to negative developmental outcomes even after maternal depression is lessened

3 Infancy, Toddlerhood, and Preschool 77

or resolved. Depressed mothers show lower levels of maternal sensitivity and emotional availability and are more likely to display negative mood states. They are also less available to support the infant’s developing capacity to mod- ulate negative states of arousal. Depressed mothers are more likely to be slow to respond to infant bids for interaction, make negative attributions about the infant, provide fewer developmentally appropriate experiences for stimula- tion and learning, and have difficulty setting limits (Embry & Dawson, 2002).

Discussion of Vignettes: Application of Research to Assessment and Practice

Vignette One

Jennie’s mother, although connected to her infant, has very little energy for inter- action and does not engage in positive, mutually reinforcing interactions with her baby. Research on early brain development and on the development of attach- ment security, has emphasized the importance of affectively attuned, mutually regulated, and positively charged parent-child interaction that helps the infant to augment positive affective states and to effectively mediate states of negative psychophysiological arousal. Jennie’s mom reads the baby’s withdrawal as a sign of “being a good baby,” yet an alternative conceptualization is that Jennie has come to experience bids for interaction with her depressed mom as anxiety pro- voking. Instead, Jennie withdraws, which leaves her alone; the consequences of this lack of “serve and return” interaction may affect Jennie for her lifetime as her opportunities for attachment, exploration, and learning are so limited.

Vignette Two

The case of Eddie has a very different etiology and pattern of maternal depres- sion. Eddie has developed dysregulated affect and an inability to self-soothe or to be calmed. This is a serious impairment as a primary developmental achievement of the first year is to form relationships that support the infants’ developing capacity for affect regulation within the context of sensitive rela- tional care. Eddie’s vigilance in monitoring his mother’s face for clues to how she is feeling can be understood as a type of hypervigilance representing a cop- ing strategy for managing unpredictable parental interaction and responses. Eddie has learned that changes in expression of maternal affect may lead to temporal “loss” of his mother, and thus these changes are now associated with anxiety because they signal a prelude of what is to come. Eddie’s needs for self- soothing and management of his anxiety overtake his capacity to stay engaged in the more developmentally normative activities of engagement and play.

Infant Mental Health: An Important Field of Practice

Infant mental health is a multidisciplinary field of clinical work, research, policy development, and advocacy that emphasizes the importance of early caregiving relationships in supporting the health and development of young children and their families. Broadly speaking, infant mental health seeks to understand and support the ways the developing child builds the capacity to experience and regulate affect in the context of attachment relationships and

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early care experiences as well as the developing child’s capacity to engage with others, explore the environment and engage in active learning. To support parenting capacity and the developmental well-being of children, practitioners and researchers recognize the complex interplay of individual, familial, cultural, and social factors that combine to shape a particular child’s caregiving environment (Fraiberg, 1987; Onunaku, 2005).

Infants who lack access to empathically attuned care can exhibit patterns of behavior characterized by withdrawal, “freezing,” and/or marked disorga- nization in their relational interactions (Applegate & Shapiro, 2005; Fraiberg, 1987). These behavioral responses, while adaptive in the short-run, impede the infant’s ongoing developmental progress by limiting opportunities for inter- action and challenging the formation of attachment bonds. The prevalence of maternal depression combined with the developmental risks it poses to infant and child well-being suggests the importance of primary prevention efforts and timely assessment and early intervention (Onunaku, 2005). Early outreach and improved depression awareness can assist mother-infant dyads to promote attuned caregiving to build an infant’s attachment and brain devel- opment in a way that promotes their own, and societal, well-being.

A Case of Perinatal Stroke: Examining Multiple Layers of Loss

Jennifer Boiler

A licensed clinical social worker in New Jersey, Jennifer serves as associate director of Field Education Operations and an instructor for the Rutgers University School of Social Work. Jennifer has extensive experience as a medical social worker focusing on medical transition, hospice, and palliative care. Jennifer currently maintains a private practice providing therapy to individuals, couples, and families.

Melanie H. is a 32-year-old African American female with a master’s degree in Special Education and a bachelor’s degree in Elementary Education and is tenured as an elementary school Special Education teacher. Melanie has been happily married to Frank H. for 10 years. Frank is a 30-year-old Caucasian male. Frank has been employed as a real estate broker and has a bachelor’s degree in Business Administration; he has been working with his firm for 4  years. They are financially secure as long as they both remain employed in full-time work; they have collective student load debt as well as a mortgage payment and a car payment. Together, Melanie and Frank are the biological parents of their 4-year-old daughter Lina H. Melanie and Frank maintain a strong con- nection to Frank’s immediate family (his mother and father and older sister) and receive much support as his parents and sister live locally and are very involved in Lina’s life. Frank’s family has been transporting Lina three times a week to and from preschool; they have been active in caring for Lina if needed. Melanie’s parents and her younger brother (in college) reside several hours away and are not able to visit often due to increasingly poor health and the inability to travel. Melanie and Frank have a solid support system of friends, neighbors, and colleagues who have young children and similar interests.

3 Infancy, Toddlerhood, and Preschool 79

Melanie had severe postpartum depression after her pregnancy with Lina. Melanie attended therapy for 2 years and was treated with a mild antidepressant. She weaned off the antidepressant with the advice of a physi- cian 1 year prior to the current pregnancy. Melanie struggled with emotional and physical trauma resulting from Lina’s preterm birth. Lina was born at 32 weeks gestational age following an emergency caesarian section due to low fetal heart rate. Lina was a patient in the neonatal intensive care unit (NICU) for 8 weeks where she was treated for central apnea, difficulty controlling her body temperature, and low birth weight. Melanie was slow to recover from the caesarian section and developed an abscess at the incision site that required further medical treatment and was very painful. Melanie was discharged from the hospital without Lina after treatment for her caesarian section. She describes that as the most challenging and unnatural event of her life. Seven weeks later, Lina was discharged from the NICU on an apnea monitor and a medically supplemented dietary regimen of high-calorie formula that Melanie fed to Lina in addition to a challenged breast-feeding relationship. These chal- lenges contributed to emotional and physical pain that left Melanie in a state of shock and depression for which she sought treatment after Lina had been home for 6 months.

Melanie had a vaginal delivery with her second child, a son, Nathan, at 28 weeks gestational age after an increase in gestational hypertension and decreased fetal movement. Nathan was immediately transferred to the NICU due to prematurity and respiratory difficulty. This was a comfort to Melanie as she felt that he would be like Lina and just need some time to grow and develop as a result of prematurity. During her initial visit to the NICU Melanie noticed that Nathan had a twitch in his hands. She told the nurses, the twitch- ing was noted in his medical chart, and Nathan was seen as scheduled by the neonatologist. Twenty hours later, again while Melanie was visiting alone, she witnessed Nathan having a seizure. The nurses reacted very quickly and sur- rounded Nathan; no one spoke directly to Melanie, who immediately called Frank. A pediatric neurologist was consulted and immediate MRI (magnetic resonance imaging) of the brain and cranial ultrasound were performed. It was later explained to Melanie and Frank that there were several conditions being “ruled out” and that MRI would assist with determining Nathan’s prog- nosis and possible treatment for a diagnosis such as stroke (see Van der Aa, Benders, Groenendaal, & de Vries, 2014 and Murias, Brooks, Kirton, & Iaria, 2014 for treatment protocols). Upon hearing the word “stroke” Melanie felt devastated. She felt physically and emotionally detached as she went through the motions of caring for herself, thinking of her son and what this news might mean for his life.

While waiting for conclusive results, the physicians ordered blood work to investigate other potential causes of the seizures such as infection. The official diag- nosis came 1 day later. Nathan had suffered a Neonatal Arterial Ischemic Stroke (NAIS). According to Kirton and deVeber (2013), NAIS is the most common type of stroke that occurs in the first days and weeks following birth. The stroke affected the left side of Nathan’s brain causing the seizures and breathing challenges. Melanie and Frank were informed that the stroke had likely caused hemiparetic cerebral palsy, which would cause Nathan to have life-long motor, cognitive, and behavioral deficits.

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Discussion of the Loss

Shortly before Nathan’s birth, Melanie became quite fearful of a second pre- term birth; she was afraid of what could go wrong medically and was inca- pacitated at the thought of being discharged from the hospital while her child remained in the NICU. Melanie felt that Lina’s typical, healthy development had been a miracle.

When Nathan was born even more prematurely than Lina, Melanie felt immediate, intense sadness and trepidation, knowing she would go through the trials of caring for another premature infant. She was flooded with memo- ries of apnea monitors, formula, and the difficulty of breast-feeding she had experienced with Lina. Melanie was panicked, thinking of how she would manage Lina, now age 4, and Nathan alone. Her husband would need to return to work as the household needed his income during her maternity leave.

When Nathan was diagnosed with a NAIS leading to cerebral palsy and other enduring motor and cognitive challenges, Melanie felt that her deepest fears had come true. She was paralyzed by the diagnosis of her infant son, especially since she was not even aware that babies could have strokes. A pedi- atric neurologist told Melanie that the elderly and newborn are at highest risk for stroke (see Nelson, 2007).

It quickly became evident that Nathan would travel a lengthy road before he would be discharged home. Melanie and Frank were trained by the hospi- tal to take care of a child with seizures who requires medication, and taught how to meet Nathan’s nutritional requirements through breast-feeding and high-calorie formula, infant cardiopulmonary resuscitation, and managing an apnea monitor. The new parents discovered that for infants who suffer strokes, there is no immediate treatment except to manage the symptoms as they occur (see Basu 2014). Melanie and Frank were already aware of Early Intervention as Lina was offered such a program; however, they were unsure of how and when to access Early Intervention Programs for Nathan (programs that would stimulate and monitor his development). This fact was unnerving to Melanie as she was aware that the caregiving responsibilities would fall on her.

During Nathan’s predischarge time, Lina was cared for by her paternal grandparents, who did their best to manage their granddaughter’s physi- cal and emotional needs. Lina was excited to meet her new brother and after waiting for over a month had great difficulty dealing with the absence of her parents. She became prone to emotional outbursts and did not want to play with others in preschool. She regressed to wearing a diaper after having toi- let trained a year earlier. Melanie and Frank were physically and emotionally exhausted trying to care for their infant son and their toddler daughter; they felt immense guilt about her drastically changed behavior. It was apparent that Lina needed their attention, but so did Nathan.

Over the next month, Nathan gained strength and neared readiness for discharge from the NICU and Nathan’s family prepared for the expected developmental challenges he would have in motor, somatosensory, visuospa- tial, cognitive, executive function and attention, language, and possibly epi- lepsy (see Kirton & deVeber 2013). Although the exact extent of the damage to their son’s brain would be difficult to predict, the stroke had caused severe

3 Infancy, Toddlerhood, and Preschool 81

neurological deficits. Basu (2014) reports that “Hemiplegic Cerebral Palsy has implications for performance in activities of daily living, quality of life, and self-esteem” (p. 516).

Once Nathan was discharged home, Melanie and Fran began the difficult task of redefining what it meant to be new parents to Nathan, with all his devel- opmental impairments. They had to develop a new set of expectations as parents and shape the plan of care for Nathan. Frank expressed sadness that he may never play sports with his son and Melanie wondered what kind of life Nathan would have with peers. In addition to redefining their image of Nathan’s future, friends and family had questions about Nathan that simply had no answers. Advice regarding Lina and her new behavior was riddled with judgment and a lack of understanding about the crisis that had impacted their family’s life. Eventually the family began to shield themselves from discussions about Nathan; as a con- sequence, some friendships were lost. Melanie was unable to return to her work as a teacher due to Nathan’s needs and decided to take a 2-year unpaid maternity leave from her school district. The financial burden was enormous. They decided to liquidate the retirement fund Frank had accrued and that he would get a sec- ond job to offset some of the household expenses.

During Nathan’s first 3 months at home, he remained on an apnea mon- itor and medication to stimulate his underdeveloped brain to remember to breathe. Nathan was a very lethargic infant, sleeping a great deal, and requir- ing a regular sleep/wake schedule initiated by Melanie to ensure that he was breast feeding/receiving formula and receiving the correct caloric intake. Melanie had difficulty developing a breast-feeding relationship with Nathan and spent many frustrating hours supporting his development of a secure latch so he could have a better chance of feeding effectively. Melanie was com- mitted to this milestone as it assisted her in feeling close to her infant and helped manage her feelings of loss surrounding the birth and Nathan’s subse- quent diagnosis.

At around 4 months of age, Nathan had a noticeable asymmetry in the general movements of his body. He was unable to open and close his left hand without manipulation from a caregiver. Lina had adjusted to her brother and was interested in the attention being paid to his development. Lina immedi- ately became an active member in her brother’s caregiving after her parents were able to explain how his body worked differently and needed their help to work like hers. Lina would grab her little brother’s hand and gently massage it open, as she had seen her parents do to help him develop use of both hands.

Nathan regularly saw a pediatric neurologist as he had several seizures after being discharged. The pediatric neurologist recommended that Melanie and Frank have Nathan evaluated by an Early Intervention Program. According to the Children’s Hemiplegic Awareness and Stroke Association (2014), early intervention programs provide specialized health, educational, and therapeutic services during the first 3 years of life for children who have a developmen- tal delay or disability. The early intervention evaluation was completed and Nathan started weekly visits by a team of professionals armed with the skills to assist his development. Nathan received free or low cost services from physi- cal therapists, speech therapists, social workers, occupational therapists, and audiologists. By 14 months of age, he could walk independently. The team that

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worked with Nathan and his family stressed the importance of interventions that improved motor control in the nonaffected portion of Nathan’s brain.

The family system had been forever changed and Melanie, Frank, and Lina were emerging from the fog of learning that they would be raising a child with chronic motor impairments, cognitive deficits, and potential behavior problems. Melanie repeatedly found herself feeling guilty and wondering if she could have prevented her son’s stroke. Bemister, Brooks, Dyck, and Kirton (2014) report that such feelings are common among mothers with fathers far- ing only somewhat better than mothers in terms of psychological concerns. Melanie decided to contact her former therapist and made two visits after Nathan was home from the NICU. The therapist recommended family therapy for Melanie, Frank, and Lina, explaining that family systems work focusing on their marriage, parenting and overall family functioning and well-being would be the most effective way to offer treatment. Melanie and Frank took this recommendation and continued over the next year to join other support organizations as they continued to learn about Nathan’s development.

SUMMARY

The role of a primary caregiver is a critical component of infants’ and tod- dlers’ ability to develop in optimal ways. Although loss of all-encompassing caregiving is a normal maturational loss as the caregiver provides “optimal frustration” to encourage the infant’s evolving self-care, other forms of loss of the caregiver in nondevelopmentally appropriate ways (through depres- sion, separation, or death) can have extremely detrimental effects. Parents also experience losses of their private relationship, of the idealized baby and child they thought they would have, and of the potential for independence they had hoped for when a child is born with conditions that will limit their indepen- dence. Assuring gentle, attuned, and empathic caregiving for youngsters and support for their caregivers is a critical aspect of care.

DISCUSSION QUESTIONS

1. A friend calls and says her cousin’s 18-month-old son has just lost both of his parents in a car accident. After talking briefly with your friend about her own feelings, she says she thinks you need to accompany her to the home and “start to do therapy” with the child. What is your response and why?

2. You work in a day care setting and one child’s mother just gave birth to trip- lets who are in the Intensive Care Nursery at the hospital. What concerns would you have for the 4-year-old child and how might you help her?

3. You are a hospital social worker and a young woman approaches you after the death of an elderly person on your unit. She explains that the deceased was her mother and that her 3-year-old son was very close to his grand- mother and she wants your guidance on how to tell her son about the death. What do you say?

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FOUR

Elementary School–Aged Children

Kelsey was pouting, yet her mother was beaming as she told Kelsey’s teacher about the new home they were buying. She was happy they would be able to stay within the school district and that Kelsey, in her mother’s words, would have “no real change.” Kelsey, a second grader, felt very differently. Her baby sister was SO annoying, and that is why they fought each night in their shared bedroom. Her mother wanted the bigger house so they would each have their own room, but Kelsey wanted to stay exactly where she was. Her best friend lived next door. All the kids on her side of the block played together on the back lawns between the houses most afternoons before dinner. She had visited the new neighborhood and as far as she could tell, there were no kids her age, and anyway, she did not like how big and empty the new house felt.

They got back in the car to drive home from school and her mother said, “Won’t you feel happy to be in the new house soon?” Kelsey replied, “No, I hate it!” After some tense exchanges, Kelsey’s mom quit trying to convince her. She knew that Kelsey would need to see for herself that there would be good things about the new house, but she also realized that, unlike an adult, Kelsey would experience the 10-block move as a loss of her friends, her neighborhood, her cozy home, and her security.

OBJECTIVES

After reading this chapter the reader will be able to:

■ Describe the cognitive, psychological, and biological development of chil- dren from age 5 and entry into school to about age 11.

■ Explain the impact of schools’ practices on regular child development as well as their vital role in promoting health among bereaved children.

■ Understand the way dual process and continuing bonds may be differently expressed by elementary school-aged children.

DEVELOPMENTAL STAGE: INITIATIVE VERSUS GUILT AND INDUSTRY VERSUS INFERIORITY

Children usually enter the school environment at about age 5 when they start attending kindergarten. Until recently, kindergarten allowed a transition from the home environment to an academic setting, but now kindergartens focus on explicit skill and knowledge acquisition. For some children, this is a first

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entry into large group situations; for others, day care or “pre-K” has socialized them to be part of a large group of children. During early elementary school, children begin to develop confidence in taking the initiative to move out into the broader world, using language skills and imagination to engage with the greater society (Erikson, 1980). Yet, some children arrive at school angry about the attention and care they have not received from caregivers and can be extremely disruptive because they have not learned to cooperate with teachers and classmates. Just as the time from infancy to age 5 includes rapid development—increased body size, mobility, and skills—so does the period from entry into school to late elementary school age, when children begin early adolescence. In kindergarten and first grade, children begin to leave home for long stretches of time and must perform in different ways from home, where they have (ideally) been nurtured and loved without many pres- sures to achieve. For children who have not been in quality day care settings, these new responsibilities constitute a major transition. Children may experi- ence a loss of positive self-image as they move from the care of a loving parent to the school environment where peers and teachers judge how well they fit.

Elementary school children thrive on structure and stability, particularly in their younger years. Neuropsychiatrist (with pediatric training) Dan Siegel describes this as a time children learn to navigate between chaos and rigidity, between a lack of control and impulsivity and inflexible adherence to rules (Siegel & Bryson, 2011). Children this age need help processing their emotions; they must learn to adapt to circumstances, build empathy, and increase their ability to attend to their own well-being (Siegel & Bryson, 2011). Kelsey felt her stability threatened and responded with inflexibility; luckily, her mother knew to help Kelsey feel safe and to create more opportunities for Kelsey to verbal- ize her concerns about adapting to the new circumstances.

For children who have not received love and unconditional acceptance in their home environment, school may provide a haven where achievements lead to praise and an increased sense of self-efficacy. As children move into the higher elementary school grades, they industriously learn and produce projects and papers and engage in creative, athletic, and other endeavors. The ability to produce in this way promotes a sense of mastery; but the child who is unable to meet this level of industry often experiences a sense of inade- quacy and inferiority (Erikson, 1980). Ultimately, if the children can meet the social and academic expectations of the school environment, they will likely thrive in the social world that will now occupy the vast majority of their waking hours.

Biological Development

Children nearly double their weight and height between the ages of 5 and 11. Fiftieth percentile 5-year-olds weigh 42 pounds and are about 43 inches tall. By age 11, a child in the fiftieth percentile weighs 82 pounds and is 57 inches, or nearly 5 feet tall. At the same time, the brain becomes more complex. Children’s brains show growth in the prefrontal cortex as well as the temporal and occipi- tal cortices (Sowell et al., 2004). Sowell et al. also found changes in the rela- tionship between gray matter and white matter in the brains of children as

4 Elementary School–Aged Children 85

they age from 5 to 11. Some of these changes were highly correlated with the development of verbal skills and they are believed to indicate more complex connections that permit higher cognitive skill development paving the way for learning.

Lenroot and Giedd (2006) identified the prefrontal cortex as the site of children’s growing ability to control impulses, make rational decisions, and integrate the brain’s activities. These abilities are often called “executive func- tions.” Philip Shaw (“Inside the brains of smart kids,” 2006) noted that the thickness of the prefrontal cortex increases between the ages of 6 and 11, and then starts to thin out again; the children with the biggest changes seem to be the brightest. Research indicates that children who have experienced abuse/ neglect have a 17% smaller (by area) corpus callosum (the brain structure that helps integrate both sides of the brain) than nonabused children (Teicher et al., 2004). Those who have experienced PTSD as a result of maltreatment also showed smaller intracranial and cerebral volumes (De Bellis et al., 1999).

Brain development and the ability to control impulses are critical to the ability to learn, to interact appropriately in social settings, and to develop peer relationships. When the biological substrate (the brain) is not developed, chil- dren are at a great disadvantage. The typical school environment requires an ability to remain seated, raise one’s hand before speaking, and generally to think before acting. At age 5, these are very difficult tasks for a large percent- age of children, but by the time children move into second or third grade, they usually have mastered these skills, likely because brain development has allowed them to develop. Yet, children who have experienced abuse and neglect have structural and functional brain changes that may put them at a disadvantage, likely as a function of their own parents often having been neglected or abused and not being able to create an optimal environment for them (DeGregorio, 2013).

Along with brain structure and function, cortisol (the body’s stress hor- mone) and the way it is managed through the hypothalamic-pituitary-adrenal axis (HPA) are known to be affected by chronic stress and trauma (Bevans, Cerbone, & Overstreet, 2008). Research with parentally bereaved children found that their cortisol response was blunted, leaving them at higher risk for depression and other health and mental health problems in adulthood (Kaplow et al., 2013).

Biological development also involves genomics. Genetics was once understood as a set of DNA (viewed as nonchanging) that individuals either got or did not get—like a gene for brown eyes. Understandings of epigenetics and the ways genes are turned on or off via methylation due to environmen- tal exposures are evolving quickly and taken together are called genomics. Essex et al. (2013) found strong associations between adverse childhood events (ACE) and methylation with epigenetic effects; in a prospective study, they showed how maternal stress during infancy and paternal stress in the preschool years yielded changes in the methylation patterns of children later in life. Although epigenetics is still in its infancy and cannot indicate what outcome these changes indicate, one can extrapolate that the neurobiological changes and changes in the HPA complex for managing stress likely play roles.

Physical play, another aspect of children’s lives from ages 5 to 11 is impor- tant for developing healthy bones and muscles, as well as imagination. Due to

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a proliferation of video and computer games, and fears for their safety in many neighborhoods, children may have fewer opportunities to use their large mus- cles and pundits have expressed concern about the development of children’s bodies and the growing levels of obesity in the United States (Wallis, 2006). Still others say the risk of obesity, and indeed the way the label of obesity is applied, is overstated and inaccurate (Campos, 2004). All agree, however, that children in this age group benefit from physical activity to maintain their health. Touch—whether gentle and nurturing or as playful rough housing— seems related to learning gross motor skills and may have beneficial epigen- etic effects analogous to the thriving of rat pups licked and handled by their mothers (DeGregorio, 2013).

Childhood obesity causes physical effects that can limit children’s devel- opment. It is highly correlated with later development of type 2 diabetes and cardiovascular disease. There are some indications that it may affect cognitive development negatively (Reilly, 2007), though this is most often found among those whose morbid obesity has stressed the circulatory system and oxygen- ation. Fitness and activity levels seem to have greater impact than weight itself (Center for Consumer Freedom, 2008).

A very pressing concern for this age group is the effect poverty has on a myriad of characteristics. In 2000, almost a fifth of U.S. children were being raised in poor neighborhoods and poverty has been associated with low birth weight and prematurity in infancy (making school success more difficult) as well as with poorer mental and physical health (Xue, Leventhal, Brooks-Gunn,  & Earls, 2005). By 2010, the poverty rate for children under 18 years old had increased to 21.9%, a 35% rise for that age group from 2000, and a shade over 25% of children under age 5 were living in poverty (Children’s Defense Fund, 2012). Minority and lower socioeconomic class children have higher rates of obesity and also experience more negative health effects related to obesity (Yancey & Kumanyika, 2007). While some blame par- ents for children’s obesity, most research indicates that parents are concerned but have limited time to prepare and serve healthy meals and to supervise exercise or activities; this time crunch is even more pronounced among poorer families (Styles, Meier, Sutherland, & Campbell, 2007). Obese children may experience loss of peer approval and/or friendships, losses that are particularly poignant during elementary school when children are developing their social skills.

Psychological Development

During the elementary school years, children undergo rapid developmental growth in academic ability as the result of improved processing and integra- tive cognitive skills. Social skills also develop considerably. The ability to navi- gate academic and social demands has a great positive impact on children’s sense of self-efficacy and self-image.

Children with learning disabilities (LD) are particularly at risk for poor outcomes like lowered self-esteem and efficacy because they have difficulty meeting these demands. If learning differences are not diagnosed early, chil- dren may grow to believe they are incapable of success and their expectation of failure can become a self-fulfilling prophecy (Lackaye & Margalit, 2008).

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At a time of life when acceptance by peers is critical to the sense of self, children with LD may experience the loss of positive peer regard, as well as loss of esteem in the eyes of their teachers and possibly even parents. While acutely felt by children, losses of esteem often are unrecognized by adults, in some part because of a widespread folk belief that children, especially those with cog- nitive differences, do not feel such losses. Wilkenfeld’s reading at the end of the Tweens/Teens chapter illustrates the reality. She shows that children with disabilities do indeed experience losses but may indicate their losses in uncon- ventional ways. When they live in communities where they are more “abled” by accommodations and have a group of similar peers, they may experience a greater sense of self-efficacy as well as support for mourning losses.

Erikson (1980) posited that in the elementary school years, children must resolve the crisis of initiative versus guilt followed by industry versus infe- riority. Given these crises, children who have difficulty succeeding in school and peer relationships risk developing a sense of guilt and poor self-image. Between the ages of 5 and 7, Piaget (1954) theorized that children move from preoperational thought processes to concrete operations processes, which remain with them to the age of 11 or 12. The preoperational stage is charac- terized by egocentric thinking and an inability (according to Piaget, though questioned by others) to put themselves in the position of others. They tend to attribute human characteristics to inanimate objects and magical thinking (a belief that their thoughts can influence events) is strong. Clearly, if a loss due to death occurs, children are at risk if they believe that their hostile thoughts may have caused the death.

By the concrete operations stage, children have more understanding of causation, quantity, and symbolic action, yet they seem unable to engage in very abstract or hypothetical thought. They can take the role of the other and are able to play games and do role-taking activities in ways that Piaget asserted were impossible before this point. Language skills develop and allow children to process their thoughts and emotions with others in ways that were not possible previously. Piaget’s assessment of children’s cognitive development may not be accurate, however. If preschool children are often able to grasp the concept of death (Rosengren et al., 2014), elementary school children are even more likely to be able to do so. Massat, Moses, and Orstein (2008) suggest that elementary school aged children are often abruptly returned to school after a major loss and that this means their dual process oscillation (between restora- tion and loss orientations) is disturbed as they must stay in restoration orienta- tion to function at school. They suggest that some of the psychological sequela of loss in elementary school may be related to this abrupt reentry with few to help process their loss. Massat et al. (2008) emphasize how important school social workers are in the amelioration of children’s grief.

Social Development

Children who have not entered school generally have social relationships that are mediated by their caretakers. Even in school, much of the activity is struc- tured and supervised until the first “recess” at school or the initial unsuper- vised play date with a peer. This new type of interaction demands social skills.

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Learning to take turns, engage in give and take conversations, share possessions for the good of the group, and even to care about the impressions of one’s peers are all relatively new skills (Gifford-Smith & Brownell, 2003).

A strong factor in a child’s acceptance or rejection by peers has to do with language skills (Menting, van Lier, & Koot, 2011). Menting et al. found that higher levels of externalizing behavior (aggression, etc.) among Dutch chil- dren from kindergarten to fourth grade were associated with poor receptive language skills and peers’ rejection. This is important to understanding loss in two ways. When children experience a loss, they have varying ways of express- ing their hurt and fear, particularly at younger developmental stages. Younger children may act out aggressively (or alternatively withdraw) in ways that create peer rejection. This then creates a second loss as bereaved children now lose the social support cushion that can promote resiliency via peer friend- ships (Criss, Pettit, Bates, Dodge, & Lapp, 2002). In later elementary school, this peer network is used more for distraction and engagement with other activities than to verbally process feelings about loss (Christ, 2000). In either case, impairment in communicative abilities, or a tendency to act aggressively, will limit a bereaved child’s ability to mobilize support after a loss, leaving him or her vulnerable to grief complications. Notably, tightening school bud- gets and “return to basics” educational policies mean that many children live in school districts where classes are large and educating students is secondary to keeping them off the street and giving only a modicum of needed math- ematical and communication skills (Carlson, 2008). These conditions do not promote the optimal education of students much less provide the emotional support bereaved children need.

LOSS EXPERIENCED BY AN INDIVIDUAL DURING THE ELEMENTARY SCHOOL YEARS

Impacts and Perceptions of Loss for Elementary School-Aged Children

The developmental processes described above have great bearing on how chil- dren understand loss as well as the tools they have available to cope with it. Whereas younger children have few tools for processing a loss and benefit most from the security of a steady and nurturing caregiver, school-aged chil- dren have a variety of newly developed skills and resources for processing the loss and for gaining support. Developmental age and stage define a child’s experience of loss. While this seems self-evident, it must be emphasized that as children continue to develop, they must rework the loss using their new, more mature understanding. Children who lose a sibling or parent in toddlerhood will need to rework this loss at both earlier and later maturational stages in elementary school (as well as over their lifespan). As children begin to imag- ine the future in later elementary school, they are likely to re-experience their previous loss or losses, realizing that graduations, learning to drive, and so forth, will all happen without the deceased loved one. These secondary losses, as they are recognized, need acknowledgment and some degree of mourning from the new developmental level, with its new skills in language, abstraction, and symbolic thought.

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In a study of children’s physical and academic self-concepts while mourning a family member’s death, Nguyen and Scott (2013) found that chil- dren with higher physical self-concepts (defined as approving of one’s appear- ance) experienced lower levels of depression after a loss. Unexpectedly, they also found that children with a higher math self-concept had increased levels of depression. They speculated that children with high math self-concept may have higher expectations for achievement, and that falling achievement in the aftermath of a family death can lead to depression.

Children from ages 6 through 11 tend to express sadness and grief in intense yet rapidly alternating spurts, showing how dual process (Stroebe & Schut, 1999) is at work somewhat differently in childhood. They may cry one moment and be running around playing the next. They seem to modulate their emotions by moving into distraction-mode more readily than older people. Although unnerving to many adults, children resiliently oscillate from asking serious and detailed questions about the death to giddy play within minutes, a healthy and normal response for school-aged children.

Children in the 6- to 8-year-old group often speak about wanting to die to be with the deceased as a form of wishful thinking about being with a loved one, not as suicidal ideation (Christ, 2000). Children in this age range tend to remember concrete characteristics such as hair and eye color and actions more than personality or other abstract characteristics (Buchsbaum, 1996) and enjoy talking about pleasant memories of the deceased (Christ, 2000). They benefit from having concrete mementoes of the deceased.

Children in the 9- to 11-year-old range seem to have a stronger need for factual information and tend to avoid direct expression of emotions, prefer- ring to compartmentalize emotion or experience it very briefly or in private (Christ, 2000). Occasionally, this may lead to aggression or withdrawal. On the whole, children in this age group seem to benefit from interventions that help them remember happier times and memories, obtain a transitional object associated with the deceased, and affirm their tendency to move in and out of emotion about the loss (Christ, 2000). Because memory acquisition and recall are better developed by ages 9 to 11, these children remember abstract per- sonal characteristics of the deceased. They miss characteristics and qualities of the person, not just the care they received from that person (Buchsbaum, 1996).

Death Losses

Death of a Parent

The death of a parent, of course, is perhaps the most life-changing loss an elementary school-aged child can experience. In Sweden, where national reg- istries allow life-course analyses of an entire age cohort, Berg, Rostila, Saarela, and Hjern (2014) found that parental death had a fairly immediate and signifi- cant negative impact on school performance and grades. They theorized that school performance mediates (directly influences outcomes) and moderates (modifies the intensity of outcomes) adult outcomes for educational attain- ment, substance use and other mental health disorders known to be associ- ated with parental death in childhood. Berg et al. (2014) suggest that attention

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to children’s school performance and enhancement of support for ongoing academic achievement may ameliorate many long-term negative impacts of parental death. It is notable that Linda Goldman, renowned for her work with bereaved children, recently related that inspiration for this work came from teaching children who had to repeat the first grade. She discovered that they had experienced multiple losses. She used class time to process many of those losses and the children in her classroom thrived and learned (Goldman, 2015). Clearly, for elementary school children, help with processing their losses must be available in school, and schools need to support learning while children are grieving.

Some research indicates that children can experience posttraumatic growth after a parental death (Brewer & Sparkes, 2011). One person whose parents both died before she was nine stated that at her current age of 19 those losses would “destroy” her, and believed that her younger age at their deaths allowed her to “bounce back” (Brewer & Sparkes, 2011, p. 211). The study also found that gratitude and enjoyment of life characterized individuals who were resilient after parental death during elementary school (Brewer & Sparkes, 2011). They observed that in the UK, bereavement is spoken of as a journey, in contrast to the United States where bereavement discourse often emphasizes restitution or return to a pre-bereavement state. Children may thus feel free to follow dif- ferent pathways for coping rather than feeling obliged to “return to normal.”

Children are consistently found to envision deceased parents in ways that continue the parent’s presence in their lives (Silverman & Nickman, 1996). Typically, they maintain their connections in one of five ways: (a) locating the deceased (in heaven, for example); (b) experiencing the deceased (e.g., believ- ing the deceased parent is watching them); (c) reaching out to the deceased to initiate a connection (e.g., praying to the deceased); (d) remembering (actively), and (e) keeping a belonging of the deceased. Silverman and Nickman see these strategies as critical to the child’s coping trajectory. Children who could not “locate” the parent or felt a lack of ongoing connection seemed to have greater difficulty coping over time. With a colleague, they also developed a trajectory of the way children perceived the connection to the deceased parent, moving from (a) seeing the parent as a visiting ghost to (b) holding onto memories of the past to (c) maintaining an interactive relationship, and finally (d) becom- ing a living legacy (making them proud, doing well) (Normand, Silverman, & Nickman, 1996). They hypothesize that children can move through these phases as their development progresses. Although we are skeptical of stage theories, this trajectory provides some guidance for clinicians as children share their understandings and for researchers as they begin to explore children’s grief more thoroughly.

Death of a Sibling

With the death of a sibling, children not only lose a playmate, confidante, and colluder against parents, but likely lose attention due to their parents’ grief. Siblings often believe they must stifle their grief to avoid adding to their parents’ sadness or irritability. Packman, Horsley, Davies, and Kramer (2006) observe that school children generally feel “I hurt inside,” “I don’t under- stand,” “I  don’t belong,” and “I’m not enough” after the death of a sibling.

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This hurt and confusion is much like that of other bereaved people, but children have fewer cognitive tools with which to make sense of the loss. Feeling that one “doesn’t belong” or “is not enough” has to do with changes in the par- ents as they grieve and transformation of the family structure into something unrecognizable. They feel inadequate to meet their parents’ needs and expec- tations. Packman et al. (2006) suggest that promoting continuing bonds can be fruitful for siblings, although they note the exception of siblings who have had  contentious, competitive relationships. They employ the language of Devita-Raeburn (2004) who talks about “carrying” the deceased sibling along in life. “Carrying” is a way of keeping the memory and relationship with the dead sibling alive, but also a way of making sure that each developmental phase is integrated with a reprocessing of the loss by the maturing sibling.

Youngblut and Brooten (2013) also emphasized this need to maintain memories of a deceased sibling and recognized that this is difficult when a sibling dies in the neonatal intensive care unit (NICU) or pediatric intensive care unit (PICU). They note that young children have a tendency to somati- cize (have tummy aches, headaches, etc.) after the death of a sibling in NICU or PICU. Children who never got to interact with the sibling except in these hospital settings may have more difficulty processing the sibling’s meaning to them. Youngblut and Brooten (2013) reported that in their sample Black chil- dren insisted that their deceased sibling “was in a better place,” an assertion not found among the White and Hispanic children. They recommend use of scrapbooks and opportunities to talk about the sibling as a way of allowing children to process a newborn or young sibling’s death.

Death of a Pet

Commonly, children in this age range lose a pet, often a beloved one that has been confided in and viewed as a family member. This is often the first death a child experiences and may set a template for how the child processes grief in the future. When this loss is disenfranchised through nonrecognition or out- right demeaning or trivializing of the feelings of grief, the child is given the message that mourning is not acceptable. A similar message is communicated if a beloved pet merely disappears and is never spoken of again. This may det- rimentally affect the child’s ability to process grief in the future. When the loss is acknowledged (as with Ethan’s funeral for Polly described at the beginning of the previous chapter) children learn that loss can be observed, discussed and mourned. Many veterinary services now recognize the power of the bond between pets and their owners and provide support resources (see for example www.vet.upenn.edu/veterinary-hospitals/ryan-veterinary-hospital/ services/grief-support-social-services/grief-support-resources).

Nondeath Losses

Losses Due to Sexual Abuse

In the United States, one in four girls and one in six boys is sexually abused before the age of 18 (Centers for Disease Control and Prevention, 2005). Children who have experienced sexual abuse endure the loss of a trusting,

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caring relationship with the abuser, and in the future often have difficulty trusting within relationships and/or being vulnerable within them. Fleming and Belanger (2001) identify the survivors’ tendency to either hypersexual- ize relationships and/or withdraw from sexuality altogether, and describe this as a long-term loss insofar as relationships are repeatedly affected in negative ways.

In adulthood, children who experienced sexual abuse have higher levels of depression, dissociative identity disorder, borderline personality disorder, criminal convictions, substance use disorders, and eating disorders (Friedman et al., 2011), and these outcomes seem to be intensified if the individual is also of sexual minority group status (LGBTQ). Yet we should not cast these associa- tions as stereotypes that diminish the resiliency of many who thrive nonethe- less (Zafar & Ross, 2013).

In one of the few studies to examine the narratives of sexually abused children while they were still children (derived from trauma focused-cognitive behavioral therapy (TF-CBT) interventions), the primary theme to emerge was their fear of the abuser and experiencing abuse in the future. These fears for safety were written in each of the 21 narratives examined (Foster & Hagedorn, 2014). Even though most children fear their abuser, they may also continue attempts to gain that person’s praise and deny the negative impact on self.

Survivors of sexual abuse may deny the effects of the abuse in much the same way that people deny the affective impact of a loss. Just as children bereaved in more traditional ways must rework their losses as they mature, children who experience sexual and other abuse must rework their under- standings to recognize, validate, and grieve the losses involved in the betrayal of the parental (or abuser) relationship. If they deny the negative impacts of the loss, they may be unable to continue to rework their understanding of the experience through more mature lenses. Part of healing and being resilient after losses due to sexual abuse involves acknowledging the experience, con- sidering the losses involved in the parental and caregiver relationships, and attending to self-care and healing over a lifetime. In short, mourning the loss of a trusted caregiver’s nurture can be as painful as a death.

TYPICAL AND MATURATIONAL LOSSES

Loss Due to Parental Divorce

Parental divorce is common when children are in elementary school and places children in some untenable positions. Children often engage in omnip- otent and magical thinking and therefore believe that they somehow caused the problems between their parents and/or the dissolution of their marriage. Further, they may be used as pawns between parents fighting over property, financial support, and their children’s loyalty. Despite the consistent and loud expert advice to help children through their parents’ divorce (Hecker & Sori, 2003), children remain the forgotten mourners. Children this age often need concrete examples in order to process new events, and while in divorce there is “the lack of a body” (Kroll, 2002, p. 113), the child has experienced a loss

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(certainly the loss of the parent who leaves the home and the loss of the former family constellation). Children need to develop a coherent story in order to process their loss without being put into loyalty binds as a result of the divorc- ing parents’ counter-narratives (Kroll, 2002). The divorce-related losses of structure, financial well-being, and assumptive world are just as powerful for children as for divorcing spouses, though in different ways.

Recognizing children’s needs for security and stability are key ingredi- ents of intervention. There are few evidenced-based approaches to care for children after divorce, but some note that programs that focus on protective factors should be more widely implemented (Pedro-Carroll, 2005). Pedro- Carroll (2005) suggests that support groups allow children to name their own losses and recognize loss and misunderstandings in other children in a sup- portive environment. Additionally, activities like newsletter construction and “TV News programs” (or by now, You Tube videos or blogs) help children consolidate knowledge about divorce while also creating interactions through which they gain support and understanding.

Loss and the Military

More attention is now being given to children’s loss in the form of sepa- ration from parents during military deployment. Parents can die during deployment or return with physical and psychic injuries. Stephanie Surles remarked “what we hear from military families is that they don’t want their children treated as victims” (Hardy, 2006, p. 11), implying that children are expected to “tough out” the separation along with the stay at home parent, in the same way the military member “toughs out” the deployment. Others assert that the children of military personnel are accustomed to frequent moves, separations from parents, and leaving friends. These multiple losses, and the fact that school-age children seem to tolerate them, may mean that military children become a bit desensitized to their parent’s absence (Hardy, 2006). In contrast, children of National Guard members or reservists who have not had these same toughening experiences or immersion in military base subculture may have more difficulty coping with the parent’s absence and return. Many reservists’ children are not in social situations where sup- ports are built in because they do not live among other military families (Pfefferbaum, Houston, Sherman, & Melson, 2011). Although children tend to show resilience, schools should be attentive to such children’s needs for support, particularly their experience of ambiguous grief during a parent’s deployments (Pfefferbaum et al., 2011)

With many veterans of the Middle East wars returning with brain inju- ries, there will be many ambiguous losses (Boss, 1999) where the parent is physically present, but changed from the parent who left to serve. Ross and DeVoe (2014), via the Strong Families home-based model, suggest how par- ents can be assisted in reintegrating their military member back into the home in ways that respect children’s need for engagement, adjustment, and care. Although aimed at younger children, the elements they describe seem useful with school-aged children as well.

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Loss of Being a Child

Children can be deprived of their childhood by many losses: being exposed to abuse (of every kind), deaths, relocation (see Falk’s reading at the end of this chapter), life in poverty, life-threatening illness (see Calvert’s reading at the end of this chapter) or differences like atypical sexual development (see Baratz Dalke’s reading at the end of Tweens and Teens). Although childhood is likely idealized and children have more worries, responsibilities, and needs than typically portrayed, many in the circumstances noted above become parentified: they feel the need to take on the responsibilities, concerns, and burdens of adulthood before their time (Jurkovic, 1997). Although recent research finds that parentification can enhance abilities and develop strengths, the general practice wisdom is that families should be helped to ensure that children are not overburdened with adult roles and responsibilities and that they have room in their lives for play, friendship, and imagination (Chee, Goh, & Kuczynski, 2014). The losses of parentified childhood are often unrecog- nized and yet losses unrecognized are losses with the potential for submerged resentment to produce grief later in life (see Huong’s observations in the Falk reading at the end of this chapter). Helping families to acknowledge losses and attempt to ameliorate and/or mourn them to some degree may help minimize the internalized rage parentified children are believed to carry into adulthood.

INTERVENTION ISSUES WITH ELEMENTARY SCHOOL CHILDREN

Children in elementary school are developmentally primed to engage with peers. It is therefore not surprising that many authors describe interventions with chil- dren based on group work. Groups allow children to feel the support of others who mourn similar losses. This re-enfranchises the loss and allows children to hear from others at their developmental level about strategies for coping with their loss. Most important, group participation shows them that they are not alone and that others have gone through very similar losses and circumstances.

Children grieve differently, taking Dual Process (Stroebe & Schut, 1999, 2005) to its extremes; they cry one minute and play happily the next, particu- larly at younger ages. Unfortunately, this makes it seem that they are either grieving “incorrectly” or not grieving at all (Crenshaw, 2002). Children blunt their grief-expression in order to protect the surviving parent or siblings from painful reminders, and also occasionally due to fears of shaming themselves by showing intense emotions. Clinicians working with grieving children must show themselves as trustworthy, truly hearing, and validating the grief, while also not pushing or otherwise indicating to children that their emotions are anything other than what they are in the moment (Crenshaw, 2002). Parents may get bereavement leave, but children are often brought back to school fairly soon after a death. It is important to allow space for their dual process to function. For example, assuring that they can leave the classroom to go to a safe space to process their grief with a trusted adult can help.

Goldman (2015) suggests use of play props such as telephones, magic wands, and other toys that invite school-aged children to talk with their deceased loved one or express their wishes. She often uses projective drawing,

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inviting children to scribble and then tell her what they see in it. Goldman dispels the myth that children do not really grieve and emphasizes that edu- cating children’s caretakers and educators to create a safe space to truly listen to the child’s thoughts and feelings about the loss is at least as important as academic work with the bereaved child.

In the case of a parent’s extended, terminal illness, decisions must be made about how to prepare for the impending death. There has been a move- ment toward facilitating attachments prior to a death while also acknowledg- ing the coming loss and using time for anticipatory grieving. Saldinger, Cain, Porterfield, and Lohnes (2004) question the value of romanticizing an antici- pated “good death” (2004, p. 916), but also recognize that facilitating intimacy and optimizing remaining time with the family member may be more impor- tant than minimizing the strains of trying to both attach and detach at the same time. They studied the effect of this ambiguous position on children and found that children did make efforts to stay connected to dying parents, even when the parent was non-responsive due to illness, or even outright “mean” (pp. 926–927). They also found that the surviving parent usually bore respon- sibility for mediating the relationship between the dying parent and the child to some degree. They often were responsible for developing or participating in legacy projects to maintain memories and connections after the other parent’s death. Saldinger, Cain, et al. (2004) found that the unpredictability of death and the tendency of families to believe they can orchestrate a positive fare- well ritual can create problems, particularly for young children who may be frightened by the physical sounds and actions of individuals as they die. They conclude that a formulaic approach to fostering attachment is not useful, but fostering attachment is valued when all parties pursue it flexibly and with sensitivity to the child’s needs and developmental capacities. Similarly, in pur- suing legacy projects adults should let children adjust their level of interest at any point in time. School-age children seem to avoid attending to letters and other communications from the deceased parent, preferring to look at gifts from that parent or other mementoes. In time, they become mature enough to handle the direct communications.

Intervention strategies to support children with dying relatives tend to be organized to allow professionals to focus care within three spheres: the cogni- tive, affective, and behavioral (Dunning, 2006). A professional who is not part of the family system can interact, sometimes in displaced and symbolic ways, with the children. They are able to convey information appropriate to the child’s developmental stage, correct misconceptions due to magical thinking and other age-related cognition, validate the child’s feelings and responses, and provide support. The worker can also help interpret some of the child’s behaviors to the rest of the family to minimize reactivity, misunderstanding and/or false conclusions (Dunning, 2006). Saldinger, Porterfield, and Cain (2004) developed a coding scheme for child-centered parenting behaviors that includes nine criteria: provision of information, communicating feelings, awareness and responsiveness, maintaining a stable environment, getting additional support for the child, exposure to the dying parent, encouraging funeral participation, relationship facilitation, and meaning-making. The extent to which the surviving parent can take a child-centered approach corre- lated highly with the elementary school-aged child’s ability to cope effectively.

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Dunning (2006) provides many excellent examples of how social workers can work with children around their misconceptions and fears. She emphasizes that simple reassurances seldom have positive impact. Children instead ben- efit from struggling with expressing their fears and understandings; later, play can be used to help children discover their own reassurances. For example, in playing nurse and mother (with the child as the mother who was the healthy parent), the child was able to state her fear that no one would be able to care for the child after the father’s death. The “nurse” and “mother” then worked together to develop a list of all the people who could help the child, something that provided much reassurance for the child as she played her role of mother.

Still another intervention is to work with children using mindfulness techniques. As with mindfulness-based stress reduction and other mindful- ness approaches, the emphasis with children and adolescents is on an atti- tude of nonjudgmental, patient awareness, sustained and directed attention, and intentional use of the awareness and attention in directed practice (Burke, 2010). In a systematic review, Burke (2010) found that most studies of mind- fulness with elementary school children have focused on feasibility and acceptance rather than efficacy. Promising results with anxiety and somati- cizing behaviors indicate that mindfulness skills may be helpful in working with bereaved children. Resources for mindfulness in children include: www .susankaisergreenland.com/content/inner-kids-level-1-training-for-the-2013- 14-school-year.html; marc.ucla.edu/body.cfm?id=27; and www.mindfulliv- ingprograms.com/links.php.

LOSS OF AN INDIVIDUAL OF ELEMENTARY SCHOOL-AGE AS EXPERIENCED BY OTHERS

Parents’ Loss of a Child

When children in elementary school die, the parents and family are most directly affected. Parents are responsible for the well-being of their children and therefore often have extreme levels of guilt about the death of a child. Rando (1993) asserts that loss of a child consistently correlates with compli- cated parental grief. The assumptive world is violated when a child dies before a parent and this leads to a heightened sense of vulnerability.

For parents living through the process of their child’s death, the tension between holding on to their child and wanting the child relieved of suffer- ing becomes unbearable at times. Parents cope by focusing on action. These actions have been categorized as piloting, providing, protecting, and preserv- ing (Price, Jordan, Prior, & Parkes, 2011). Piloting involves directing the child’s care and treatment decisions while providing involves actual parental care of the child. Protecting the child from knowledge of the illness, caregivers they perceived as less competent, and other real or perceived threats, was prob- lematic: efforts to “protect” in these ways led to communication failures and anxiety. Preserving the family, both during the child’s illness and after the child’s death, includes preserving the child’s place within the family (Price et al., 2011). This implies that helping parents find ways to take constructive action can assist them to cope during a child’s course of dying.

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Finkbeiner (1996) interviewed parents after their child’s death and found disorientation to be their most intense response. Their attempts to make mean- ing often were defeated by the apparent senselessness of the child’s death. In a developed world, children’s deaths are viewed as utterly preventable, either through the miracles of modern medicine or vigilance about preventing risks and avoiding accidents. Yet, children will always be vulnerable. That children will outlive parents is part of the expected order of life. A child’s death turns the assumptive world upside down. Parents often question their reason to live, yet most do not “so much choose to live; they just didn’t choose to die” (Finkbeiner, 1996, p. 9). Making a conscious decision to live usually comes later, often with some sort of “wake up” call that one is not so much living as merely continuing to exist.

The decision to live often coincides with a decision to make some sort of commemoration. Klass (2005) observes that many bereaved parents contribute their expertise to the group Compassionate Friends due to their own and oth- ers’ need for support, but also to maintain the connection to and commemo- rate their deceased child. Maintaining the bond is believed to be critical to the parent’s ability to continue to function.

Recent technologies like Facebook, virtual memorials through funeral homes, and other online spaces where children are memorialized appeal to some parents, yet work against the North American norm of “moving on” after a death (Mitchell, Stephenson, Cadell, & MacDonald, 2012). This inter- sects with taboos about discussion of child death and the popularity of virtual memorials is thus surprising. Mitchell et al. (2012) analyze how commercial websites furnish parents with templates to memorialize a deceased child and in doing so both memorialize and reconstitute the child. In maintaining the websites, parents’ and others’ postings “[transform] the lived experience of their child’s death into forms of sociality which include that absent child’s presence” (Mitchell et al., 2012, p. 419). The memorial sites seldom include dis- cussion of the child’s death, and unlike memorials for stillborn and neonatal deaths, do not include postmortem pictures. Maintaining a sense of the child in the present is a critical feature of the sites. Others’ ability (even strangers) to visit the website and virtually “light candles and leave teddy bears,” usually at a small cost, eerily reconstitutes the child as a commodity. The interactional nature of these sites whereby parents wish the (dead) child goodnight, apolo- gize for not writing more frequently, start charities in children’s honor, and “share” their child with others creates a public space very different from typi- cal rituals of death. Mitchell et al.’s (2012) analysis of “on-line afterlife” (p. 429) suggests that these sites fundamentally change notions of grief and bereave- ment to be congruent with continuing bonds (Klass, Silverman, & Nickman, 1996), but also move beyond that with expectations of on-going interactions.

In addition to continuing the bond with a deceased child, find- ing some meaning in the death is hypothesized to coincide with healing. Lichtenthal, Neimeyer, Currier, Roberts, and Jordan (2013) explored how meaning-making, benefit-finding, and cause of death interact in parents’ grief after a child’s death. Not surprisingly, parents whose children died due to violence had a much more difficult time making meaning (“it was God’s will” or “he will be safe now” were typical attributions, often com- bined with a statement about the brevity and difficulties of life), and fewer

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than half were able to do so; a small fraction (22.9%) identified a benefit after the death (“a silver lining” such as growth in empathy or not taking life for granted) (Lichtenthal et al., 2013, p. 320). It is important to note that meaning-making may involve consideration of why the death happened, a type of causal attribution, but not always. Sometimes, the meaning may be related to the benefit that came afterwards or to a focus on fate. Of par- ents whose children died of natural causes, 61% were able to do some meaning-making (often God’s will, a safer place, or medical reasons) and benefit-finding was exhibited in more than three quarters of their sample. Symptoms of complicated grief were found in both sets of parents but were more pronounced among those whose child died due to violence.

A particularly challenging form of parental grief comes after a child dies from complications related to a developmental disability. All parents cope with the loss of the idealized child when a baby is born; parents whose child is ill or has a diagnosed disability feel this loss acutely and chronically (Boss, Roos, & Harris, 2011). Although prior theories asserted that parents of children with disabilities had “chronic sorrow” (Olshansky, 1962), others contest that (Green, 2007; Morse, Wilson, & Penrod, 2000). Green (2007) argued that the lack of for- mal and informal support is what aggrieves parents with such children.

In a study of mothers whose children with disabilities died, women often felt that their love for their child and their loss were not validated (Milo, 2005). The study found that members of the parents’ social network said things like “Don’t you think it was for the best?”—a painful dismissal of their child’s value. With so much of their selves involved with caring for their child, the bereaved mothers in Milo’s study had to navigate a reworking of “Who am I now?” Having wished for relief from the burdens of care, but also loving their child and the gifts the child brought to their life, women struggled to make meaning from the conflicted experience. They often noted that the child “made me who I am today” and that they “[didn’t] believe this happened for no point and no reason.” Milo asserted that mothers coped better if they originally were given an accurate portrayal of the child’s prognosis and were encouraged to take control where it was possible. Support groups were once again identi- fied as the intervention of choice. When the group, or supportive profession- als, helped parents recognize and accept the paradoxes of their experience, they were more able to cope and actually be transformed positively by the loss (Milo, 2005). Boss et al. (2011) also suggested that parents coped best by identifying the paradox of loving one’s child while also feeling burdened, a hallmark of ambiguous loss and chronic sorrow when parenting children with disabilities.

Parental responsibility is unique to the parent–child bond. As losses of self and sense of competence, in addition to the actual loss of the child, are all experienced simultaneously (Rando, 1993), grief is made more complicated. Couples often are stressed when each parent grieves differently, both due to gender differences and individual coping abilities. These stresses may threaten the relationship as the mutual support between partners is lost at a difficult time when each hopes to be comforted by the other. Instead, guilt may be displaced into blame, leading to further stresses in the relationship. This said, despite the commonly held view to the contrary, divorce is not more common after a child’s death (Schwab, 1998).

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Parents also encounter an economic toll after a child’s death. Recent research indicates that the costs associated with funerals and time off from jobs for bereavement leave actually pale in comparison to economic costs asso- ciated with “presenteeism”—being present at one’s work site but not fulfill- ing duties or being able to work at typical levels of efficacy and efficiency (Fox, Cacciatore, & Lacasse, 2014). Fox et al. (2014) observe that others have found that overall lifetime earnings of bereaved parents are lower than those not bereaved, but it is unclear whether this is due to ramifications of low- ered productivity while on the job (“presenteeism”) or the result of changes in bereaved parents’ work priorities or capabilities that find them assuming less demanding but lower paying employment.

Forgotten Mourners—The Grandparents

With lifespans extending into the 80s and 90s, many grandparents experience the death of a grandchild. Like parents, grandparents inhabit an assumptive world in which grandchildren outlive both themselves and the grandchild’s parents. When grandchildren die, grandparents are believed to experience a double-loss in that they mourn the grandchild with whom they often had a special relationship, and their child who is bereaved and whom they cannot comfort. Recent research identifies grandparents as experiencing five aspects of pain: pain from previous bereavements; pain from the loss of the grand- child; the pain of witnessing the son or daughter’s grief; the pain of witnessing subsequent negative changes in the son or daughter; and pain that is common to all grief (Gilrane-McGarry & O’Grady, 2011). Providing support for adult children while mourning a grandchild is clearly stressful. New loss triggers older/prior losses and grandparents may be particularly vulnerable to cumu- lative grief as they are likely to have accumulated more losses. Regardless, it is important not to forget grandparents when developing bereavement resources following the death of an elementary school-aged child.

Losses (Nondeath) Related to Child Protective Services

Sometimes parents and grandparents lose custody and care of their children due to their removal from the home by child protective services (CPS). In the first edition of this book, Tara Sinclair traced the long-term consequences for a child (Nina in Chapter 3) after her removal from her parents; those consequences included attachment problems and difficulty trusting on the part of the child. Parents have consequences too. Nixon, Radtke, and Tutty (2014) have empirically confirmed what has long been assumed: mothers experience deep pain and grief when their children are removed by CPS. They explore the particularly fraught situation where children are removed from their mother when there is intimate partner violence (IPV). Mothers’ ambiguous grief of not knowing where their child is, whether she or he is being well-cared for, and losing her identity as a mother are such destabilizing losses that one of the mothers actually returned to her abuser looking for comfort (Nixon et al., 2013). They note that women’s par- enting has often been controlled within the IPV relationship and the removal of

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children is one more experience of being controlled. Sympathy for mothers who have substance use problems or other behaviors that put children at risk is often lacking, yet these ambiguous losses are then disenfranchised and more painful as women lack support. The painful loss women experience is clear, as is their need for support and validation to process their grief.

Whether due to death or removal by CPS, the loss of a child of elementary school age violates parental notions that they should have care and responsibil- ity for the child. Grieving these losses requires ability to revise the assumptive world wherein the child outlives the parent and/or will always be with the parent. Further, a parent’s responsibility to provide care for bereaved siblings adds additional challenge to her or his own coping. Finding ways of continu- ing the (revised) bond with the child is critical to moving through such loss.

READINGS

A Small Miracle: Perinatal HIV Transmission

Deborah Calvert

Deborah Calvert is a social worker at Children’s Hospital of Philadelphia with decades of experience working with children and their families. After years in the NICU, she moved to the Special Immunology Family Care Center. The Center is dedicated to providing comprehensive medical, psychosocial, and developmental services that are family-centered and responsive to the needs of HIV infected and affected children and their families. To this end, the program provides psychosocially supported medical care for (a) HIV exposed infants, (b) perinatally—infected children, teens, and young adults, and (c) infected caregivers.

I saw the young mother and her 4-month-old walking down the hall and she seemed to have a sense of relief on her face. I knew she had just been told that her son had his third negative test for HIV and was considered HIV negative, just like the majority of our families. Meanwhile, I had just been working with Ashley (not her real name) who at age 10 was processing something even adults have trouble understanding.

Ashley was born with HIV. She has been coming to our clinic to receive her antiviral medications since she was an infant. A bright, bubbly little girl, she has been living with her aunt ever since her mother died when she was 3. I will talk more about the work with Ashley and other children like her after providing some context for work with families dealing with HIV.

Since the mid-1990s, advances in prenatal HIV treatment have signifi- cantly reduced mother to child transmission. Early in the HIV/AIDS epi- demic, transmission rates from mothers with HIV to their newborn children tended to be about 20% to 30%, but since the development of highly active antiretroviral treatment (HAART), the transmission rate in the United States has dropped below 1% (Peters et al., 2003). Extensive outreach by pediatric, obstetrical, and public health providers, HIV community agencies, and others helped pregnant women get tested for HIV and then start on HAART if they had HIV infection. It is important for women to know their own health status

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and learn to care for their own health. Additionally, medication can minimize the mother’s viral load and diminish the chance of transmission to her babies. Although some transmission still occurs among women who receive little or no prenatal care due to struggles with addictions, mental health issues, reli- gious beliefs, IPV, poverty and/or other psychosocial issues, the majority of women receive enough care that they are able to give birth to children who do not go on to have HIV infection.

Clinics like ours originally developed to follow children who were peri- natally HIV-infected and continue to follow families from the earlier era. Fewer neonates are born with the virus now. We have, however, seen an increase in HIV-positive children who have been born outside the United States and then adopted. Our clinic works with children to help them receive the medical care they need, and also helps the families teach their children about their condi- tion as they grow using developmentally appropriate teaching methods.

Children who are infected must take their HAART medications consis- tently, and yet very young children do not understand why they must swallow the foul-tasting liquid, and later learn to swallow pills. This is an ongoing pro- cess and one that changes depending on each individual child’s developmental stage. When children with HIV are very young, most of the work of the social worker is with the family. Many families with perinatally transmitted HIV are affected by poverty, drug use, minimal family supports, inadequate education systems, and/or untreated mental illness. Often, the early work involves getting families connected to health insurance, cash benefits, stable housing, legal sup- ports, and other concrete resources while building trusting relationships. These relationships allow us to help families be consistent with medical care and pro- vide the emotional and medical support necessary to help the family explain the diagnosis and treatment of HIV to their children as they grow. Disclosing the diagnosis to children has been fraught over the years. Traditionally, children have been viewed as needing to be protected from such information, but Bluebond- Langner’s pivotal book in the late 1970s challenged this notion (Heeren, 2011). Heeren also notes that the stigma associated with HIV infection is very strong in the United States, yet even stronger in many other countries. Families fear that if they tell their children their medical diagnosis, they will disclose their status to others, resulting in the children and family being ostracized.

We suggest that children learn about their diagnosis and its meaning between the ages of 9 and 11, but we work with them before that time to help them understand how to keep their bodies healthy. Until about first or second grade, most children will go along with what their caregiver tells them to do. We may need to help them learn how to swallow pills at this age, but on the whole, our social work role is to support the family and help the caregivers stay healthy so that they can help the child thrive. As children become aware of their specific needs, we focus on how their visits to the clinic help them to stay healthy and strong. This is the beginning of the disclosure process. In later years, most children will start to notice that their need to take medica- tion and have frequent medical appointments differs from their siblings and peers. A child may begin to ask questions about why they need to take medi- cation. We often start by comparing their medication to something preventive that they already understand. For instance, one boy had a dog that took heart- worm preventive medicine every day and we compared his medicine to his

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beloved dogs as a “way to stay healthy.” Another little girl had a father who took statins to prevent plaque build-up, and although the girl did not under- stand all the implications of her father’s medicine, we used the same idea of a medicine taken to stay healthy.

Eventually, children seem likely to ask, or our doctors urge parents/ caregivers to disclose the diagnosis to their child. This can be done during a clinic appointment or privately at the family’s home. Children between the ages of 9 to 11 have the capacity to comprehend how their immune system works and also understand that there are subjects we do not discuss with others outside of our home. As with Ashley, the physician and social worker meet with the child and caregiver. When asked whether she had ever heard of the HIV, Ashley denied it, but her eyes told us differently. The doctor explained how the medi- cine she takes “keeps the virus” under control and “helps her immune system be strong and healthy.” We start laying out the beginning of a story we will reiterate often over the next several years. Using developmentally appropriate materials, we will continue to help Ashley learn how to live with HIV.

With Ashley, whose mother died of HIV/AIDS, we will need to help her understand how far medicine has come. With adequate health care and medi- cine adherence, she will live with HIV infection as a chronic illness rather than as a quickly debilitating disease as in earlier decades. Helping her understand how her situation differs from her mother’s will be important. This will be dis- cussed at a later time and be a part of the discussion of how HIV is transmitted. As Ashley grows, our explanations and health considerations will mature too.

Although in the past few decades there have been many advances in HIV treatment, a child born with HIV may still have multiple burdens and losses brought on by being HIV positive. Some of these burdens may include: com- plicated medication regimes, increased medical appointments, convoluted family histories which often include the death of one or more parent, involve- ment in child welfare services, community stigma, and trauma related to HIV disclosure and treatment. Still another burden for Ashley and other children with HIV infection is to manage the already complicated sexual development of adolescence and young adulthood while keeping themselves and their part- ners healthy. Helping children and teenagers explore what being HIV positive means to them is an ongoing process that keeps all of our psychosocial staff engaged and busy.

As children approach their “tween” years, there is also a large component of psychosocial education related to sexuality and sexual development, which includes information on how to make healthy decisions about sex. We initiate discussions about HIV transmission, safer sex behaviors, the disclosure pro- cess, and other topics teenagers need to understand as they begin to express their sexuality. There are certainly added responsibilities and burdens to the sexual development process when a teenager is HIV positive.

Research with teens in the United Kingdom indicates that they experience a tension between fearing that others would view them as “damaged” due to their HIV positive status and consciously insisting that HIV is only a small part of their identity; this tension affects thoughts about disclosure to friends and romantic partners (Hogwood, Campbell, & Butler, 2013). Hogwood et al. (2013) found that most teens in their small study elected not to disclose their HIV status to their romantic partners. This portends other losses to come as

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children move through adolescence without open disclosure and feeling the freedom to engage in intimate relationships and friendships without a sense of defensiveness.

An interesting side effect of programs such as ours is that recent research shows that children with HIV infection actually have fewer mental health problems than children who were HIV exposed but are uninfected (Malee et al., 2011). It seems likely that the extra attention the children who were HIV positive received may have helped them as they grew up in families often affected by maternal mental illness, substance use, and economic resource problems (Malee et al., 2011). These children received adult attention in their intervention programs and their families received supportive services. They were able to process not only their condition, but also the circumstances of their lives. One can only assume this was helpful.

Not an American Movie

Huong Nguyen and Deborah Falk

Huong Nguyen is a young woman who writes of her experience moving to the United States in childhood. This narrative is then discussed by Deborah Falk, an instructor with years of experience helping facilitate English language learning and adjustment to the United States among new immigrants.

“When I reflect on it now, I realize I didn’t really understand what my mother meant when she told me we were leaving for the United States. The epiph- any that should have arrived still had not reached me when we were at the airport. I remember trying to make myself feel sad so I would cry because that’s what people do in the movies. My most vivid image of that last day is of myself running toward my father. I stepped over the red belt that separated the departing from those waving goodbye, and put my teary face against him. I did this because I thought it was what I was supposed to do. The thought that I would never see him again never came. I forgot to realize it wasn’t the movies.

“And it wasn’t. Living in the United States was not glamorous and rich like in the videos I had seen. No one was aware that we existed. Everything sur- rounding us was incomprehensible. My mother, in her frustration, did not realize that shouting back Vietnamese in vain could not make anyone understand her.

“For the first few years, we lived timidly. I went to school because I was the only one that could; both of my older brothers are mentally handicapped. By second grade, I had already learned to peel shrimp, mop the floor, and do the dishes. In addition to household chores, I became the family secretary, interpreter, translator, and connection to everything that was English speak- ing. I read and explained the mail to my mother. I called phone companies, filled out my school medical forms, and left school early to accompany my mother to her doctor’s appointments. No longer could I pout and cry and expect my mother to coax me as I had in Vietnam. Parental roles gradually reversed as I took on responsibilities most 7-year-olds never knew.

“As I ceased to be a child, my relationship with my mother altered. At a very young age, it became businesslike. I talked to her mainly about what

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she wanted to know but couldn’t read; she never asked me about my inter- ests or what I did in school. While my mother remained very traditional, I Americanized. We have so little in common now that there is little talk between us. When she drives me home from school, we sit in silence. I find myself say- ing only what is necessary because it has become harder to talk to her. In learn- ing English, I traded in much of the Vietnamese I knew.

“I will readily admit I am envious of my peers. They didn’t have to cook or know all the complexities of a phone bill. I envy their long, carefree child- hoods. I want to have memories of my mother talking to me about how I liked school, of her coming to my concerts and award assemblies, and of her having long conversations with me. I want her to know what is really going on in my life. I want to feel I was a child.

“I realize children of immigrant families are forced to grow up faster, but when I stood at the airport, I didn’t realize I would have to trade in my child- hood and relationship with my mother to get on the plane. I don’t like looking back and remembering that I made myself feel sad because that’s what hap- pens in the movies.”

* * *

Huong is not alone in envisioning life in the United States as what she saw depicted in American movies. Losing contact with her father was only the first of many losses that she suffered on the way to reconciling to life in the United States.

Idealized images of the United States are probably the least significant of the losses that children like Huong, the writer of the above essay, suffer when they and their families emigrate. Loss of access to family members (sometimes parents) and being removed from communities, food, and routines that are familiar and comfortable are just the beginning. Overspreading every aspect of a child’s life is the requirement to live and communicate in a language that does not feel like “home.” All of these processes can be at least as stressful as the physical move from one country to another.

Even more daunting are the psychological and social losses—as Huong notes, childhood is abruptly ended, role reversals happen between parents and children, and the expectation of a new personal and cultural identity can exact a heavy toll on children who emigrate to a new world. The resilience of such children is often not recognized or celebrated and successes often go unnoticed as children are pushed to Americanize as rapidly as possible.

Despite the deeply disruptive picture that immigration can paint for chil- dren and young adults, many do, in fact, thrive. Often there is a history of hard work and physical and financial hardships that have served as practice for the rigors of navigating a new world. Although each child who arrives as an immigrant has his or her own unique story, there are experiences of loss that are shared despite differences in countries of origin, immigration circum- stances, and family configurations.

One of the immediate losses that shapes an immigrant child’s experience is the disappearance of a “home base.” Writers about immigrants often divide them into voluntary (moving to a new country by choice, no matter how hard that choice may be) and involuntary immigrants (those who have no choice but to move, due to reasons of war, famine, or other disaster). For children,

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there is yet another category, that of young travelers who are pulled along by a tide they do not understand and often resent, not yet having the social or emotional maturity to understand that moving may have been perceived as the best of a series of choices.

Children often have very little information or understanding of the pro- cesses of leaving their homes and moving to another continent. Whether they are refugees or voluntary immigrants, the process can take years, and stu- dents may have forgotten—if they were ever told—that this kind of plan was “in the works.” One day they are dressed in their “party clothes” and taken to an airport where, like Huong, they are on the far side of a red velvet rope separating them from everything that they had previously called home.

There are many reasons why adults might not tell children of emigration plans until they are en route; parents are not confident the process will result in success; children are not deemed to be “stakeholders” in the decisions or the logistics of such events; or adults are too busy completing the process to think about the effect it might have on the children. If the move is outside the bounds of legal processes—undocumented entry into new country—children might be intentionally uninformed so that they cannot be implicated should some- thing go awry. They are rarely privy to the complicated issues of immigration, including documentation of medical and other requirements. School “inquisi- tions” about such details can leave them frightened and fearful. Children often do not yet have the English proficiency to answer questions in ways in which they could in their first language and they feel powerlessness over a situation that is often murky to them, at best.

In many cases, immigrant children have had little experience with travel beyond their home villages or cities. When asked where they are from, younger immigrant children are likely to respond “my country.” They sometimes do not have a sense of country identification, much less one of being “African” or “Asian.” Yet as soon as they arrive in the United States, they are labeled in such ways, and expected to use and respond to these terms. It is no wonder that many look literally shell-shocked when they arrive. It is, indeed, like hav- ing landed on a foreign planet. In their new world, students are asked to define their identities in ways that they might never have had to explain before— even to themselves—and in a language for which they do not yet have the words. The work of acculturating to a new environment is doubled as children have to define who they were “before.”

In this new world, everything is strange—houses, food, words, toilets (particularly toilets), seasons, schools, teachers, homework, cars, crosswalks, littering—each day is an endless litany of systems a young child had taken for granted, even if in a refugee camp. The procedures that Huong navigated for her mother—rent, utilities, school relationships—are even more daunting when the activities are those of adults, and one does not yet have the language to interpret or question activities that seem senseless or random.

Of course, students who arrive by crossing the United States/Mexico bor- der illegally have a vastly different experience of leaving their home country and arriving in the United States. The added stress of physical and psychologi- cal danger places additional stress on children, and on their relationships with the adults responsible for their care. Due to the unremittingly complicated vagaries of immigration law and visa statuses, children are often separated

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from parents in the process of entering a new country. Sometimes one parent is allowed to come but not the other; sometimes a child enters with a parent he or she has hardly known growing up. Thus an immigrant child can lose not only a secure sense of home, but also the persons who shared that home with the child. No matter what the circumstances, immigration is almost always an inordinately expensive process, so the chance that a child will be able to return to his or her home country to see relatives left behind is an unrealistic prospect. Huong immigrated to the United States when she was 8 years old; Huong did not see her father again until she was 17.

Loss of one’s first language is often a predictable outcome of immigrat- ing to a new country as a young child. Many in the “receiving countries”—in this case, the United States—see this as a positive result. Teachers are often heard to say “the more quickly they acquire English, the better off they will be.” While achieving proficiency in English is a necessary and almost always desirable long-term goal, in the short term it can have divisive effects on fam- ily relationships and structure.

Jim Cummins, a well-known expert in the field of second language acqui- sition, has termed the social language that children often acquire relatively quickly basic interpersonal communication skills (BICS). Often termed “play- ground language,” school-age children have a variety of contexts in which this social register of language is used in meaningful contexts. On the other hand, cognitive academic language proficiency (CALP), the language of instruction and learning, is acquired almost exclusively in formal school settings and rarely used with peers or in social situations.

BICS often takes 2 to 3 years to acquire (sometimes less depending on a variety of personal and contextual variables) but CALP often takes at least 5 years before a student has gained proficiency. The salient point is that both varieties of language often take parents far longer to acquire. Both immigration policies and procedures place heavy emphasis on “self-sufficiency”—that is, securing employment such that new members of American society are not a “drain” on the host economy. Thus, in many immigrant families, working long hours 7 days a week leaves little time or energy for adults to work on English language study.

Children quickly become translators (reading written documents) and interpreters (the use of oral communication) for their parents and family members. While this is often a critically useful skill for families, children are often placed in uncomfortable situations. Sometimes the subject mat- ter is far more mature than what a child is typically exposed to—medical matters, intricate financial concerns, or matters that are very personal in an adult  orientation. The result may be that children are under pressure to enable adult solutions and results while still under the age of any kind of consent.

As Huong describes so eloquently, she also lost her childhood when she and her mother immigrated. This is one of the most poignant and disruptive losses that an immigrant child can experience, and one that is little understood by many.

In essence, Huong became her mother’s personal business manager— talking to utility companies, translating bills, and helping to navigate school

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procedures. Sometimes students take advantage of their superior language skills compared to those of their parents or older family members. School deadlines are missed, discipline notices go untranslated, less-than-exemplary report cards vanish. More often, students like Huong have unexcused absences due to accompanying a parent to a medical appointment. Alternatively, they may come to school unable to stay awake, because they have had to stay up late doing their own homework while simultaneously supervising younger siblings.

Loss of school time is, in some ways, a relatively benign side effect of being “parentified.” The loss of a dependable parent–child relationship can be far more devastating to family dynamics. Students realize that parents have no power to control or punish them; communication and roles are frayed and sometimes severed. Some children understand that their parents have made sacrifices for them in coming to a land where nothing will be familiar or com- fortable, but in other cases, children are resentful and desire to separate them- selves from their parents and the culture that defines them.

While identities at home may be expanding and children may be taking on additional responsibilities, at school a different scenario is being played out. Students are often treated in ways befitting children far younger than they are, based on their developing language skills. Sometimes telegraphic language is used (“Tomas go bathroom?”) or even baby talk (“time to go bye- bye!”) by teachers who forget that just because students cannot yet communi- cate in English, they have not lost their ability to think and reason effectively. Uncomfortably often, immigrant students may be placed in classrooms with students who have learning or behavior problems. Early stages of language acquisition are treated as disabling conditions, instead of as a temporary state which can be addressed by skillful teaching in the present, to help students advance to grade-level instruction as quickly as possible. Instead of having “access to the curriculum” that the law requires, immigrant students are often in virtual holding tanks until their English skills advance. There is often a sig- nificant disconnect between being at home where they may have significant psychological power, and school where they are treated as deficient. Whatever the class configurations, if there are several or more immigrant students in a school, they are often automatically grouped together. Their shared lack of English ability is believed legitimate to dictate educational and social place- ment. Despite their relative inexperience with students from countries unlike their own, immigrant students are thrown into a group of other English lan- guage learners (ELL) and expected to act like a “little United Nations.”

A wide range of cultural norms may be violated unintentionally. A girl’s sense of propriety may be seriously upset by being expected to collaborate on group projects with boys, much less attend coed gym classes where activ- ity can be embarrassingly personal (swimming or tumbling, for example) and clothing is uncomfortably revealing. An immigrant girl found crying in a gym class is often thought to be shy or fearful of the physical activity, when in fact she is mortified and worried about what her parents will think when they learn about their daughter’s activities in school. In the United States, students may be asked to learn or cooperate with others whose cultures or communities are at war with each other in their home countries. They are often expected to

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give up their cultural identities—both negative and positive aspects—far more quickly than is realistic. Teachers are often blindsided by immigrant students who erupt in frustration or anger, and who have not yet acquired the language to explain why they are upset.

Uprooting is difficult for anyone, but for children and students, there are ways that can help make the process go more smoothly and exact fewer social and psychological tolls. Some of those strategies are outlined in more detail below. Valuing the language and life experience of newcomers goes a long way toward helping children and students reconfigure their identities. The presence of a “significant other”—someone who provides a point of sympathy and stability, someone who plays a pivotal role in helping immi- grant children and students adjust to living in a strange new world—can be the difference between a miserable transition and one that is difficult, but doable. Despite memories of a painful transition, Huong is now a successful young adult with multiple educational degrees, professional employment that she enjoys, and a strong relationship with her mother, albeit still somewhat businesslike. It is not the “happily ever after” of an American movie plot, but an example of an ongoing story of intertwined losses and hopes, emblematic of the experiences of immigrant children.

SUMMARY

Children in elementary school change rapidly. Much of their psychosocial growth relates to moving from the family environment to the bigger world as they enter school. Normal maturational (and developmental) losses occur as a result of being judged by teachers and peers instead of being uncondition- ally loved (ideally) in one’s home. This means that children experience gains as they navigate these challenges and develop a sense of self-efficacy, or may experience a sense of failure if they are unable to negotiate these changes. These judgments by teachers and peers can be very challenging when a child has a disability or other difference that creates a separation from the peer group. Children like Ashley who are living with HIV have a hidden difference that may make them feel estranged even when they seem well integrated in their schools. For children who move from another country, these losses are inten- sified as norms are different, language is different, and often these children are being leaned on by parents for support instead of the other way around. Schools need to assure adequate support staff like social workers, school nurses and trained teachers so that children have the supports they need.

When children in this age group lose a parent, sibling, pet, or other significant relationship, they have varied abilities to cope. During kindergarten and first grade, they may not have enough verbal facility to process feelings of loss and may withdraw or become hostile or aggressive if the loss is more than they can process. As they grow, they may be less willing to overtly express emotion, but have more ability to verbally process the loss and cope by holding on to important memories and linking objects.

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Support groups seem particularly helpful for school-age children. Although these children increase their social connections, they seldom have networks that include others who have experienced the same loss they have unless they are overtly welcomed into a group. The opportunity to share experiences helps children feel less isolated and ostracized. Support groups also provide an opportunity for validation and shared problem solving with peers, and offer professional support to help clarify misconceptions and draw out supportive opportunities. Likewise, bereaved parents find the support of other bereaved parents critical to coping.

DISCUSSION QUESTIONS

1. If you were working in an elementary school like Sandy Hook, where a shooter came in to the school and killed several students as well as himself, how would you guide the school to handle the first 24 to 48 hours? What guidance would you have for the aftermath once students begin to return to the school?

2. How might you work with children who have recently moved to your school who come from non–English-speaking countries and who translate for their parents at school meetings?

3. How could you explain to a school administrator why you believe some students’ loss and trauma histories impact their academic work?

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FIVE

Tweens and Teens

Sean was cocaptain of the football team, although baseball was the sport he loved and his pitching skills were widely recognized and admired. He was an excellent pitcher from the time he was 8 or 9 years old. As a high school junior, he played or practiced nearly all year and already had college recruiters expressing interest. He seemed likely to get a scholarship to an otherwise unaffordable 4-year college.

Recently, Sean’s elbow began to hurt a lot and his pitches lacked their earlier “zip.” His parents took him to an orthopedic specialist who discovered that a liga- ment in his elbow had pulled a small piece of bone loose at the growth plate. He had to stop pitching and make decisions about surgery. His parents could not afford this elective surgery and he felt like his life was over.

The joy Sean used to get from good grades and teachers’ approval felt hollow. He missed the crowd noise, the electricity of competition, and he missed being a star pitcher with lots of prospects. He had known who he was when he went to the pitch- er’s mound, and although he tried to be at all the games to support his teammates, he felt increasingly depressed. He became chronically irritable.

Sean’s academic work started to suffer, as did his social relationships. His girl- friend left him. Eventually, he met with a school counselor who helped him recognize the validity of his sense of loss, both of himself as an athlete and of the potential for a scholarship. Once he was able to recognize those losses, he could think about other college options. Sean began to feel less irritable and to focus on his academics. He began to think about jobs that would permit him to help other young athletes prevent catastrophic injuries.

OBJECTIVES

After reading this chapter the reader will be able to:

■ Describe the psychosocial and neurobiological development of tweens and teens with special emphasis on the way the teen brain is impulsive and cre- ative, yet also polarizing and social.

■ Identify why tweens and teens are at “double jeopardy” in their grief. ■ Discuss the pros and cons of why group support for bereaved tweens and teens is most effective, yet also challenging.

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DEVELOPMENT: IDENTITY DEVELOPMENT VERSUS IDENTITY DIFFUSION

Ages 11 to 13 are often referred to as the “tween” years or early adolescence. They comprise the years between the concrete operations cognitive style and straightforward relationships of childhood and the abstract thinking, idealism, and judgments of a true teen between ages 14 and 18. For the purposes of this chapter, tween and teen will be used to refer to individuals in those age ranges whereas “adolescent” will be used to refer to individuals in both age groups together. Adolescence is a time of brain changes, consequent changes in hypo- thetical reasoning and abstraction abilities, growing skills for impulse control (though still not totally developed for most), and a clearer sense of self. By the latter part of the teen years, individuals begin to consolidate their own identity and often start to build intense relationships with romantic partners, as well as with close friends. Adolescents take on more adult responsibilities as they complete their school work with little assistance from parents, take jobs, learn to drive, and even begin to vote. This adolescent period develops into what is called “emerging adulthood” (Arnett, 2007).

Biological Development

There is controversy about how teen and adult brains differ and what those differences mean. There is relative consensus in the neurological literature that differences, revealed by functional magnetic resonance imaging (fMRI), among the tween, teen, and adult brains have functional consequences. The most obvi- ous changes in the brain are due to modifications in the activity of the prefrontal cortex, and pruning (or thinning) of “extra” neurons during adolescence. Giedd (1999) and Giedd et al. (2006) described changes in the structures of both the pre- frontal cortex and the corpus callosum that are believed to gradually promote more reflective thought, impulse control, and more rational decision making.

Jokes about teenagers being “crazy” are of long-standing, but newer neurobiological understandings are changing the way we view this life stage. Dobbs (2011) writes, “Troublesome traits like idiocy and haste don’t really characterize adolescence. They’re just what we notice most because they annoy us or put our children in danger” (p. 48). He ties adolescent risk taking to the evolutionary need to search for new opportunities and to be open to taking risks to grow. Similarly, Siegel (2013) also views adolescence as an important life stage that promotes creativity, growth, and innovation. He coins the acro- nym of “Adult-ESSENCE” or “Adol-ESSENCE” to stand for Emotional Spark, Social Engagement, Novelty, and Creative Explorations (p. 12) to describe adolescent core issues. In Brainstorm (Siegel, 2013), changing brain structures (particularly, the development and integration of the prefrontal cortex) are tied to the human needs for adventure and connection. Siegel views childhood as a time when the child swings between rigid adherence to rules and chaotic behavior. In adolescence, the rigidity of rules and safety alternates with impul- sivity and risk taking.

Siegel suggests that adolescence is a time the brain integrates: The left and right hemispheres of the brain communicate better and the cortex develops more neuronal connections with middle structures of the brain. Integration

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of the brain yields more accurate judgments and allows adolescent and adult thinkers to develop a more socially competent brain with more capacity for balanced judgment (Blakemore, 2008; Siegel, 2013). Teens begin to weigh their risks more realistically as the brain pruning continues.

Changes in the adolescent brain seem to set the stage for “hard-wiring” brain pathways: For instance, use of drugs like THC, methamphetamine, and MDMA (“ecstasy”) seem to lay down “wiring” that raises the risk that an individual will succumb to addictions and/or, some assert, to schizophrenia (Moore et al., 2007). Likewise, engagement in learning a language or even a video game lays down neuronal “traces” that enable skills. The “use it or lose it” aphorism is at work as skills and thinking patterns that are used frequently become “hard-wired” (neuronal connections are developed) while skills and thinking patterns that are not used end up being lost (Underwood, 2006). This may have implications for adolescents who experience loss and grief at this stage of rapid brain modification.

The most obvious biological changes have to do with puberty and its accompanying body changes, usually leading to the secondary sex charac- teristic development that leaves boys looking like men and girls looking like women. Further, sexual and reproductive functions, such as nocturnal emis- sions (male) and menses (female), develop even when the individual’s experi- ence in Western society usually has not prepared them for full adulthood and reproductive function. Teens both impatiently wait for, and later are embar- rassed by, these dramatic bodily changes. There is growing evidence that the age of physical maturation is dropping in Westernized countries (Ong, Ahmed, & Dinger, 2006). Lower levels of exercise and activity (Davison, Werder, Trost, Baker, & Birch, 2007), higher body mass index (Biro, Khoury, & Morrison, 2006) and better nutrition (Gluckman & Hanson, 2006), socioeconomic status (Obeidallah, Brennan, Brooks-Gunn, Kindlon, & Earls, 2000), and/or expo- sures to chemicals and hormones (Den Hond & Schoteres, 2006) have all been implicated in lowering the age of puberty and of menarche (first menses or period).

Aside from early onset of secondary sex characteristics like pubic and underarm hair, breast growth in females, and genital maturation, early puberty is correlated with social outcomes such as early sexual activity (Halpern, Kaestle, & Hallfors, 2007), substance use (Ge et al., 2006), and other risk-taking behavior (van Jaarsveld, Fidler, Simon, & Wardle, 2007). This engagement in “adult” types of behaviors occurs when the individual’s body has only recently assumed biological maturation. Pregnancy at earlier ages is fraught with complications, substance use appears to have a greater negative impact on the brain that is still developing (Moore et al., 2007; Smith, 2013), and other risk taking behavior can lead to accidents that have life-changing (or ending) consequences. In short, when tweens’ bodies mature to adulthood before their minds and abilities do, they are left feeling odd at best, and risk poor outcomes (Gluckman & Hanson, 2006).

Even when occurring at customary ages, the physical changes of adoles- cence may inspire a sense of loss because they indicate movement away from the less responsibility-filled time of childhood. For those who mature early, the “out-of-sync” sense may also be experienced as a loss of social conformity, albeit possibly compensated for by the cachet of feeling adult. Because change

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always involves a loss of the status quo, individuals going through the many biological changes of adolescence certainly experience maturational loss.

Psychosocial Development

Piaget (1954) identified the hallmark of adolescence as the ability to engage in abstract thinking; ideas themselves can be manipulated and the individual is no longer reliant on seeing, hearing, or touching objects to consider their inter- relationships. Erikson (1980) viewed the psychological task of adolescence as the development of identity. During adolescence, individuals not only think about who they are, but about how they appear to others. The developmen- tal danger is identity confusion, the lack of an identity that is coherent and distinct.

Along with a growing ability to see oneself through the eyes of others and to consider how and why one adopts or rejects certain social roles, Erikson (1980) emphasized the consolidation of ego identity and integration of a sense of sameness, continuity, and congruency within one’s self-concept. According to Erikson, many adolescents regard differences as faults. Although they view themselves as unique and want to differentiate themselves from their family of origin, they also want to fit in with their peers. Erikson observed that a critical feature of adolescence is the tendency to view behavior as identity. For instance, instead of saying that one did not get good grades one semester, adolescents tend to invoke character deficits—“I’m a moron”—that they may believe define who they are in a more permanent, persistent, and pervasive manner than just having a bad semester. Seligman (1995) showed that attri- bution of situations to permanent, pervasive, and persistent character traits rather than to temporary circumstances tends to inspire a pessimistic attribu- tional style that places adolescents at risk for depression and anxiety.

This tendency to attribute behavior to inherent personal traits may be most harmful to teens who engage in risky behavior and may subsequently be labeled with terms, such as delinquent, no-good, and loser. Such labels can become self-fulfilling prophecies when the behavior is not understood by authorities (or powerful peers) as the result of transitory circumstances. Teens take in the identity message that they are durably “bad.” Erikson cau- tioned: “[I]f diagnosed and treated correctly, seemingly psychotic and criminal incidents do not in adolescence have the same fatal significance which they have at other ages” (1980, p. 97). Thus, policies like charging lawbreaking teens as adults and processing them in the adult justice system may cause more problems than they remedy.

Identity development and adaptation plays a significant role in process- ing loss. Sometimes the losses relate directly to identity: for example, a teen who loses a mother may identify herself as a motherless daughter. Adolescents who experience multiple losses may come to view themselves as “angels of death,” as one young client did, not able to view the confluence of loss as out- side of his control, but instead seeing it as connected to his very identity. The vestiges of childhood’s magical thinking remain in adolescence and beyond. Adolescents’ abstract thinking abilities are still rather new and they may struggle to find a way to make meaning of death.

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Famously, adolescence is bound up in peer relationships. The tween becomes ever more aware of the world outside his or her family of origin/ caregiver, and peers gain more influence. Trying on new social roles is as natu- ral as the new body individuals develop during this time. The confluence of new body, new roles, and new friends can be confusing to adolescents as they try to adopt more adult behaviors that may invite negative sanctions (par- ticularly, in areas of sexuality and substance use). Yet, if they maintain more child-like roles of dependency, they are urged to “grow up already.” Among their peers, individuals can gain support as they navigate these mixed mes- sages and “try on” different adult identities. The typical adolescent is viewed by society as successfully navigating adolescence if she or he is able to move into young adulthood capable of committing to relationships and occupational goals (and ideally beginning to work in paid employment).

Marcia’s (1980) work on identity development, which builds on Erikson, holds that in adolescence and early adulthood exploration of roles intersects with commitment to roles. Marcia’s patterns of moratorium (exploring roles without a commitment), foreclosure or early closure (commitment to roles without much ongoing exploration), identity diffusion (continued exploration without role investment), and achievement (commitment to roles after explo- ration) have received persuasive empirical support (Meeus, van de Schoot, Keijsers, & Branjis, 2012). This process helps explain why adolescents “try on” everything from occupational roles to personality styles.

Gender differences become both more defined (overtly expressed in dress and behavior) and more blurred (blending gender roles) as individu- als are urged to adopt the socialization of their gender in culture-consistent ways. Gender expression is tempered by peer groups who expose adolescents to varied ways of expressing themselves, often in deliberately androgynous ways. For boys moving from the “boy code” (Pollack, 1998) to manhood, the journey is made more difficult by competing messages about what the identity of a male adult encompasses: “The traditional image is of the man who does not express his emotions freely and favors a traditional role toward women; the ‘new man’ is empathic, egalitarian and sensitive” (Pollack, 1998, p. 147). Michael’s reading at the end of this chapter illuminates the longing bereft young men may have for a father to teach them what it is to be a man.

Girls becoming women also negotiate socializing messages about tak- ing on traditional roles of care giving and dependency versus adoption of demanding occupational roles (Gilligan, 1993; Pipher, 1994), yet most seem to internalize the ethic of care. As gender fluidity becomes more common across the globe and the adolescent task of identity formation intersects with broader questions of gender identity and the expression of sexuality, there likely will be greater latitude in both gender identity and sexual orientation in the com- ing years (Fontanella, Sarra, & Maretti, 2014).

Following a death, adolescents have impaired ability to proceed with “normal” development amid the inherent stresses of loss. Additionally, for adolescents who are themselves seriously ill or dying, pursuing the develop- mental urge toward independence comes at the tremendous price of forgoing support at a time when their coping capacities are severely challenged.

Recognition of one’s identity may also be challenging when teens stray from norms and adopt socially devalued roles. The lack of support for teens

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who are gay, lesbian, bisexual, transgender, or queer can be distressing and isolating at a developmental phase when they need support for identity con- solidation (LaSala, 2014). Other losses occur frequently (e.g., loss of a love rela- tionship, death of a pet, loss of an occupational dream, or other goals). These are addressed in more detail in the following.

LOSSES EXPERIENCED BY THE ADOLESCENT

Death Losses

Grace Christ and her colleagues have devoted their careers to exploring the impact of loss on children and adolescents. In a review article (2002), they assert that early adolescents or tweens are “characterized by ambivalent expressions of dependence and independence and sometimes by angry and perplexing expressions of selfish egocentrism” (Christ, Siegel, & Christ, 2002, p. 1271). By mid-adolescence, which Christ et al. define as 15 to 17 years old, individu- als have developed a more accurate ability to assess situational demands and develop more empathic abilities. They have greater abilities to understand the nature of death, though they tend to maintain earlier developmental charac- teristics of asynchronous expressions of grief (cycling in and out in a dual- process that only gradually becomes more consistent with adult tendencies to maintain longer periods of sadness and anhedonia). Christ (2000) recom- mends that tweens and teens be told about the nature of a parent’s illness even when that disclosure seems to promote anger and withdrawal.

More recently, Balk (2011) reviewed reactions to loss in similar age ranges and contends that early adolescents (10–14) tend to be more frightened and overwhelmed by loss whereas middle adolescents (15–17) tend toward anger and attempts to camouflage their grief. He asserts that older adolescents (18–22) tend to feel either accepted and loved, or rejected, with a strong focus on relationships during their mourning. Balk draws on Fleming and Adolph’s theories (1986) that bereaved adolescents must resolve five core issues: pre- dictability of events, mastery/control, belonging, fairness/social justice, and self-image. Each of these core issues has cognitive, behavioral, and affective tasks associated with it. For adolescents, the loss of a secure base (due to death of a family member) at the very point that teens would normally be pushing away from family likely contributes to the challenges associated with identity formation, the establishment of a value-set, and a sense of “fit” in the world.

When adolescents experience the death of a loved one, their use of sup- port is often limited to friends and family members who have experienced the same loss. The bereaved family members or friends may want to talk or process their own grief in ways that teens find hinder their own grieving (Rask, Kaunonen, & Paunon-Ilomonen, 2002). This finding, from a study of 14- to 16-year-olds in Finland, is corroborated by hospice workers in the United States who report similar experiences in their clinical caseloads: emotional ventilation by others inhibits the teens’ own grief-processing and meaning- making (personal communication in supervision with JLM McCoyd).

Among other reasons, teens may inhibit their emotional expression due to others’ seeming need for support, or because they want to present as

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“adult,” (something they may assume includes little emotional expression). In this sense, teens are said to experience “double jeopardy” (Oltjenbruns, 1996). Again, Michael’s reading at the end of this chapter shows how teens may inhibit their own emotional expression to protect surviving parents and oth- ers. They often feel compelled to hide their emotional reactions to loss, yet they are deprived of support for processing their loss because they refrain from let- ting others know about their thoughts and feelings. Other times, rather than protecting others, teens seem to believe that expressing emotions openly, or requesting support, would indicate that they are not yet fully adult. The more insecure they feel about their maturity, the more reluctant they are to share their vulnerabilities and distress (Rowling, 2002). Research indicates that par- ents and teachers interpret adolescents’ silence to mean that adolescents are not feeling the intensity of the loss in adult ways, and they then tend not to validate the feelings of adolescents (Pfefferbaum et al., 1999). It is a vicious circle: adolescents avoid discussion with the very people who may be able to help them, and the adults interpret their silence to mean that the tween/teen does not need support.

Rask et al. (2002) report that only about a third of their sample of ado- lescents received significant support from friends and family. Rask et al. also noted that participants reported fears of death, loneliness, and other thoughts that hindered their ability to process their grief. They hesitated to tell others of these challenges to mourning and meaning-making. This implies that interac- tion with adults, whether trained grief counselors or empathic school staff and/ or attentive parents, will be beneficial for adolescents after a significant loss. If adolescents are feeling these challenges but also stifling the expression of their own grief, it is incumbent on the adults who care for them to gently draw them out and explore their fears. A startling finding in Rask et al.’s study was the report by teens that when a friend died, others offered little or no support.

Rask et al. (2002) found that the teens were more interested in support from a mutual aid group than in “therapy” as such. Although adolescents may hesitate to share their grief openly, they do seem to benefit from interventions that draw them out with the use of symbolic material such as writing song lyrics or creating artwork (Cinzia et al., 2014). Having bereaved teens (later in their bereavement) help to facilitate the group is quite effective. The adult functions to arrange a safe place for the group to gather, to assure confidential- ity is understood, and to help the student facilitators with planning.

Death of a Parent

The death of a parent not only inspires feelings of loss, but affects adolescents’ family structure, economic security, and life plans (Cinzia et al., 2014). Initial responses to the loss often entail not only sadness but significant fear/ anxiety about how the surviving members of the family will continue to function (par- ticularly economically) as well as a heightened sense of vulnerability to other losses. Cinzia et al.’s (2014) review of studies of parentally bereaved adoles- cents shows that teens’ academic performance suffers in the year following the death and they often have intrusive thoughts about the parent’s death. Adolescents seem to need to process both the time immediately preceding the death as well as the aftermath, but differ in their interest in being part of the

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funeral and other family arrangements after death. Studies suggest that some adolescents elect to distract themselves outside the home whereas others feel that involvement with the arrangements cements their sense of belonging in the family. Cinzia et al. (2014) also report findings that indicate growth and a sense of enhanced maturity among some bereaved adolescents. In short, Cinzia et al.’s review finds that while there are many variations in adolescent responses to parental death, there seems to be a common tendency to avoid overt discussions of the death and its impact with peers/friends, the precise people of most interest to adolescents. They suggest “the creation of special moments of encounter and dialogue between parents, adolescents, and health professionals: the teenagers can thus take advantage of the opportunity to express their feelings and to revisit certain situations by talking directly with parents and experts” (Cinzia et al., 2014, p. 373). They also note that helping adolescents return to their routines is a key to helping them cope well and that creative memory building is helpful.

Manor, Vincent, and Tyano (2004) assert that adolescents typically use their newfound abstract thinking abilities to consider their beliefs about death and may even “wish to die,” wishes Manor et al. distinguish from a desire to commit suicide. They note that adolescents are old enough to understand that they will die eventually and that this starts a process predicated on thoughts about death. They posit a series of adolescent phases in response to awareness of death. Teens experience a phase of chaos after the death that leads to narcis- sistic depression and then to renewed cathexis of the object (the self) as part of customary developmental processes, resolved, with some degree of pain, in a decision to live. Adolescents who become suicidal in thought or action may or may not actually wish to die, but the impulse may result in death by mis- adventure (Manor et al., 2004). It is thus important to assure that teens have someone with whom to process these feelings so as to recognize that they are temporary and understandable.

Conversely, some bereaved adolescents are spurred by parental death to consider existential questions and grow from that reflection (Brewer & Sparkes, 2011). The intensity of adolescence makes it a prime developmental phase for such growth. Cait’s study of young women who lost a parent during adolescence bears this out. The women she interviewed reflected on religious and spiritual beliefs, with some embracing their faith and others rejecting or revising it (Cait, 2004). Interestingly, nearly all used spiritual beliefs to retain connections to their deceased parent. Many struggled with how to believe in a loving supreme being that allowed the parent to die (Cait, 2004). Adolescence is a time of figuring out who one is and what one believes: although obviously mourning after the death of a parent, adolescents’ reflections on existential questions may allow them to grow and mature as a result (Dehlin & Reg, 2009).

Death of a Sibling

Sibling bereavement provokes similar spiritual struggles (Batten & Oltjenbruns, 1999). Although the four teens interviewed in Batten and Oltjenbruns’ small study expressed different changes in perspective, none remained unchanged by the death of their sibling. This is consistent with earlier work that found grief, personal growth, and ongoing attachment in adolescents who experi- enced the death of a sibling (Hogan & DeSantis, 1996). Adolescents had an

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increased sense of vulnerability and a desire for reunion with the sibling. When personal growth was an outcome, it usually entailed increased resil- iency in the form of optimism, maturity, and further development of a sense of self along with increased “faith consciousness” (Hogan & DeSantis, 1996, p. 244). The teens’ ongoing attachment (continuing bond) with their deceased sibling included regrets, endeavors to understand the “whys” of the death, and attempts to “catch up” by “updating” (p. 245) the sibling on events and reaffirming the continuing importance of the deceased sibling.

Sibling death is surprisingly common, affecting nearly 8% of the U.S. population before the age of 25 (Fletcher, Mailick, Song, & Wolfe, 2013). Yet, the consequences of sibling death during childhood and adolescence have not been researched as extensively as parental death or the death of a child (Fletcher et al., 2013). In the sibling relationship, shared family history, similar cohort influences, and tight environmental circumstances often lead to close (or at least tightly entwined) connections. Fletcher et al. (2013) examined the “spillover” effects on siblings who experienced the death of a sibling in child- hood or adolescence and found that years of schooling are reduced with sub- sequent increases in failure to finish high school, reduced earning capacity, and increased teen pregnancy. Further, these effects are stronger for bereaved sisters than for brothers. Fletcher et al. postulate three mechanisms for these effects: the siblings’ own grief and school impairment, the families’ changed structures and ability to support the surviving sibling, and the increase of existential questions that may dampen motivation for achievement. The com- bination of double jeopardy (the tendency to silence one’s expressions of grief when they most need to be shared) and these lifetime socioeconomic effects make it clear that grief workers play a role in helping adolescents process their grief while at the same time helping them to stay on target with their schooling.

Death of a Grandparent

Not infrequently, young children lose a grandparent, but with increasing lon- gevity, this typical first family loss often comes during adolescence. Research in New Zealand (Breheny, Stephens, & Spilsbury, 2013) traced how grandpar- ents come to “be there” as the grandchildren are born and how this translates into “being there” to provide child care/support and to develop ongoing close relationships with the grandchildren as they age. Avoiding “interfer- ence” and cultivating enjoyable relationships with the grandchildren was described by the sampled grandparents as self-evident (they believed all grandparents would enjoy such contact) and enjoyable. In the United States, Scherrer (2010) traced how grandparents became some of the main support- ers of adolescents grappling with out of the norm gender and sexual orienta- tions, showing how intense the attachment between adolescents and their grandparents can be.

Characterized by high levels of support and love and less emphasis on regulation than in the parental role, these relationships are mourned when grandparents die. A study of adolescents whose grandparents had died within the prior 6 months (in Canada) showed that gender, time since death, and number of deaths experienced had no significant impact on death anxiety; the level of grief in response to the death was the only

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variable positively and significantly associated with death anxiety (Ens & Bond, 2005). Ens and Bond posited that death anxiety is mainly a function of the relationship characteristics and subsequent grief. Yet, this intense grief is often disenfranchised as grandparental death is to be expected. Adolescents benefit when their grief is validated and they are provided a safe space to remember their grandparent and talk about him or her. Adolescents may be conscious of their parents’ grief and inhibit themselves from expressing their grief at home. Again, schools have a special opportu- nity to provide the place for adolescents to process such grief without fears of making their parent’s grief worse.

Death of a Friend

The Centers for Disease Control (CDC) names “unintentional injury” as the number one cause of death in adolescence, with suicide and homicide close behind (CDC, 2010). Even so, with advances in medicine, more individuals affected by childhood illnesses such as leukemia, cystic fibrosis, and other con- ditions fatal in childhood in the past, now live into adolescence and beyond, making malignant neoplasms the second cause of death for the 10- to 14-year- old group (2010). Worldwide from 2000 to 2012, HIV-related deaths among adolescents tripled (World Health Organization, 2012), yet as the reading by Calvert in Chapter 4 indicates, children are now less likely to become infected perinatally, and children and adolescents in nations with access to highly active anti-retroviral therapy and supportive health care are living with HIV as a chronic illness rather than a life-threatening one.

Whether from neoplasm or HIV, the struggles of adolescents during illness are prolonged and poignant; friends may gather round to help sup- port their friend during illness. Many times, affected teens spend much of their recovery time trying to “act normal” and maintain the friendships that are so important at this age. The novel and movie “The Fault in Our Stars” vividly shows these themes (See trailer at www.google.com/search? sourceid=navclient&aq=&oq=the+fault+in+our+stars&ie=UTF-8&rlz= 1T4AURU_enUS501US502&q=the+fault+in+our+stars+movie&gs_l= hp..2.0l5j41.0.0.4.39525………..0.qooRAtsN5dk#kpevlbx=1). The strong efforts to maintain normalcy may mean that friends are blindsided when a friend actually dies. Grief Speaks has developed a resource area for teens who experience the death of a friend (www.griefspeaks.com/id89.html). Even more startling for teens is the death of a friend by homicide as reflected in Celeste Johnson’s reading at the end of this chapter. The injustice and sheer surprise that comes with a friend’s sudden death in adolescence is not only hard for teens to adjust to, but often is the first time they experi- ence the death of a peer. In one of the few studies of adolescents’ experience with death, Ewalt & Perkins (1979) found that many more teens (juniors and seniors in two Kansas high schools) had an experience with death than had been predicted; indeed nearly 90% had experienced the death of a close friend or relative and 40% had experienced the death of a friend. In short, although adolescents often are exposed to deaths, they also often have few opportunities to process that grief because of their own reluctance to expose their feelings and thoughts, and also because they work hard to maintain a facade of normalcy.

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Nondeath Losses

Loss of Self-Esteem/Identity

Tweens and teens need to build intense and close peer relationships where they feel known and esteemed. When their identity is devalued by peers due to some sort of difference, they can become distraught and impulsive. Bullying is often an indicator of such devaluation and adolescents cannot easily or constructively avoid the school environment where it most often occurs. This has had major ramifications for teens who are lesbian, gay, bisexual, transgender, or queer (LGBTQ). As suicide is a potential outcome of bullying, it  must be taken very seriously as a loss of peer acceptance and self-esteem (www.suicide.org/teen-suicide-and-youth-suicide.html). The Trevor  Project was started to help prevent suicide among LGBTQ youth (www. thetrevorproject.org). Adolescents who are out of the ordinary in some way that is important in their environment (bookish in an athletic community; dark skinned in a pale community; from another country) tend to be at risk for feeling a loss of self-esteem. Adults need to take these losses of peer valua- tion seriously, help adolescents express their loss, and look for communities of acceptance. Teens on the whole seem to have a trajectory of suicidal ideation that peaks between ages 14 and 17 and patterns of increasing or decreasing ideation may be predictive of suicide attempt (Reuter, Holm, McGeorge, & Conger, 2008). Unexpectedly, males with decreasing ideation are more likely to attempt suicide, while females with increasing ideation are more likely to attempt suicide (at least in Reuter et al.’s Caucasian sample).

The effort to assure teens “It gets better” (www.itgetsbetter.org/pages/ about-it-gets-better-project) has helped to prevent suicide during the pain- ful years of adolescence when differences seem insurmountable. Although established to help LGBTQ youth, their pledge includes a vow to “speak up against hate and intolerance whenever I see it, at school and at work” and to reassure teens that it gets better. Even Sean, a Big Man on Campus whose  story introduced this chapter, experienced a profound loss of self- esteem after his identity as a star athlete could no longer be enacted due to injury.

Loss of a Relationship

The development of relationships is a critical developmental aspect of ado- lescence and romantic relationships are a crucial part of this. Yet, romantic relationships dissolve so frequently in adolescence that theorists believe that changing romances are part of how adolescents learn to develop, maintain, and dissolve intimate relationships, as well as identify their orientation to gender and sexuality (Collins, 2003). In a study of Canadian heterosexual teens who experienced the recent dissolution of a romantic relationship, Connolly and McIsaac (2009) found reasons for the break-up clustered pri- marily around unmet “interdependence” needs. This indicates that the teens were able to recognize their own desires for intimacy, connection, and affilia- tion and to end relationships that did not meet the standard they had begun to internalize. While adolescent romance has often been disenfranchised as “puppy love” (Rowling, 2002), the intensity of grief has negative health effects.

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Again,  adolescents need support to mourn not only the relationship but the hopes and dreams they had built while thinking about futures with the part- ner. These secondary losses must be identified and acknowledged as valid sources of grief.

Loss of Health

Typically, teens who are ill struggle with the demands of differentiation and developmental maturation at a time when their health requires them to depend more on adults. Farrell and Hutter (1980) found several themes in their research with dying teens: changed perceptions of self-attributable to altered appearance, lack of control over life, frustration about dependence on adults, isolation from peers, being a source of worry for parents, physical pain and limitations, and uncertainty about the future. Notably, they did not find teens to be preoccupied with death. They recommend helping ill teens continue to focus on the day to day. They encourage self-care and engagement with peers (to the extent possible) since this allows teens to continue to feel “normal” and to continue developmental tasks to the extent they can. At least one scholar suggests that adolescents should not make independent decisions about life and death, recommending a shared model of decision making with parents and medical providers because adolescents’ decision-making capacity has not fully matured (Markowitz, 2007).

Sometimes ill health reflects chronic conditions that adolescents must learn to manage as they move from pediatric to adult care providers, a transi- tion that involves taking on more responsibility for their own health (Reed- Knight, Blount, & Gilleland, 2014). For social workers who are helping with this transition, assessing the teen’s executive function, self-efficacy, and dis- ease knowledge and how these interact with social factors such as family con- flict and degree of parental monitoring will help identify areas for intervention (Reed-Knight et al., 2014). Also, losing care providers who have cared for one through childhood, in many cases truly keeping the teen alive, can be painful. This loss may be unrecognized and disenfranchised, yet operates to sensitize (or “depress”) teens in ways they may not recognize.

INTERVENTIONS WITH TWEENS AND TEENS

When it comes to exploring adolescents’ experience of loss, research and practice wisdom encourage gentle, specific questions asked by trusted adults. To a vague question about “how things are going,” a teen likely will reply that things are “fine.” Rowling (2002) suggests the following questions: “How did you react? (Not, What did you feel?); How do you experience your grief?; What did the loss mean to you?; What strategies do you use to cope that are helpful?; What kind of advice is helpful?; With whom do you share your loss?” (p. 289). These provide a gentle, implicit demand for an answer while also providing specific guidance about what to talk about, something most teens appreciate.

That said, peer interaction is the most valued activity during adoles- cence, so interventions aimed at groups of teens seem to meet their devel- opmental needs most fully, even if it is often hard to get them to try a group

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(Malone, 2012). McFerran, Roberts, and O’Grady (2010) suggest that music provides both a “window” into grief (opening dialogue when sad songs are chosen) as well as a strategy to consciously use music for mood management. Adolescents can select music that allows them to express their grief or music that distracts or enlivens. Although adolescent groups may seem to avoid overt discussions of grief and loss, using symbolic activities like lyric-writing (McFerran et al., 2010) and focusing on somatic aspects of grief (Malone, 2012) seem more acceptable and effective in work with teens.

Broderick and Frank (2014) suggest that adolescents benefit from learning mindfulness-based techniques to build executive function and manage diffi- cult emotions. A universal approach to teaching the skills of body scan, self- compassion, empowerment, and emotion management (Broderick & Metz, 2009), the Learn to BREATHE program offers skills that may allow bereaved or ill adolescents to cope with the intensity of grief.

An interesting “intervention” is happening with teens in Israel at the Miriam Rodman School in Kiryat Yam. The teens of the school interview fami- lies of young Israeli soldiers who have died and they create a life book to give the family. In developing these books, the teens are guided by a faculty men- tor, but they are expected to meet with the bereaved family and hear the story of the deceased. The books include pictures, stories, and other mementos of the soldier’s life and death. Aside from the powerful and meaningful books created for the family (along with a copy for the school’s library), the teens also learn to be unafraid of talking with bereaved people, and to manage their own emotional responses to both the death and the experience of interview- ing the family. When teens are helped to understand the experience of grief and mourning, they likely move into adulthood more capable of supporting bereaved others and less frightened of managing their own emotions in the face of grief.

RESPONSE TO THE DEATH OF AN ADOLESCENT

When adolescents die, it is often sudden due to accident, homicide, or sui- cide (Murphy, Johnson, Wu, Fan, & Lohan, 2003). Such losses betray parents’ assumptive world and may leave survivors (whether family or friends) with posttraumatic stress disorder (PTSD) (Boelen & Spuij, 2013; Murphy, Johnson, Chung, and Beaton, 2003). Following traumatic death, parents must grapple with the unfairness of life and often require a longer than usual time to adjust. Adolescents (friends or siblings of the deceased), although in a period of rapid development, may still be impulsive and engage in some magical thinking. They may be more susceptible to complicated grieving (Melham, Moritz, Walker, Shear, & Brent, 2007) precisely because of the many changes (and sub- sequent maturational losses) that are naturally a part of adolescence.

Parents’ Loss of a Tween or Teen

Parents are the most common mourners of a teen. As noted earlier, a teen’s death is often sudden. Traditionally, violent, sudden death, particularly sui- cide, was believed to raise the risk of complicated grief and PTSD for survivors,

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especially parents (Rando, 1993). Recent empirical findings suggest that the sudden death of a child does entail more persistent and pervasive negative outcomes (as measured by death accommodation), though homicide led the way to more difficult adjustments than suicide (Murphy, Johnson, Chung, et al., 2003). Many researchers note the relationship tensions that occur for cou- ples when a child dies, spurred by differences in grieving styles, the fact that both require support at the same time, and hampering of the couple’s com- munication (Rando, 1986,1993; Schwab, 1998). Yet Klass (1986–1987) suggested a paradoxical effect: Couples experience a profound bond due to the shared loss of a child, yet each is somewhat estranged from the other because each parent had a singular relationship (and subsequent loss) with the deceased child. Grief affects both in ways that it does most mourners, with sadness, anhedonia, lethargy, periodic upsurges of grief, and the need to share stories of the deceased, often in asynchronous ways. In a unique longitudinal design, Murphy, Johnson, Wu, et al. (2003) found that marriages experienced stress after a child’s sudden death, with marital satisfaction decreasing over time to reach a low at 5 years after the death. Despite consistent findings of lower mar- ital satisfaction after loss, Schwab (1998) reported little evidence to support the widely held view that divorce rates increase for couples whose child dies.

As with the death of a younger child, parents’ dreams for their child are part of the loss. Adolescents may be starting to engage with parents in a rela- tionship that is more rewarding than formerly as the normal rebellions of the tween and early teen years wane. In obituaries, parents commonly observe that a child “was just getting his life together” or “at the beginning of her life” when the teen dies. As with making meaning in other losses, parents find hope and solace when they can usefully memorialize a tragedy (Klass, 2005; Klass et al., 1996).

When a teen dies as a result of suicide, the parents struggle with the “why” of the death and may find little solace even when the decedent has written a suicide note (Lindqvist, Johansson, & Karlsson, 2008). Lindqvist et al. (2008) report that these notes, which often take the form of reassurances of love, requests for forgiveness or requests that parents forget them, provide little understanding of motives. They comment that this may reflect the basic problem that teens are not able to convey their pain or impulse toward suicide, and hence may act on it rather than communicate that they are struggling. In their small sample, most parents struggled with surprise, betrayal, and with anger toward the teen for taking such action over what parents viewed as nor- mal life problems. The research identified a mismatch between parent’s wishes and the provision of support to the bereaved parents and family. Intervention was often given soon after the teen’s death, but parents indicate that they pre- fer to receive support for a longer period of time after the death.

Grandparents’ Grief After Adolescent’s Death

Grandparents may not be viewed as “legitimate grievers” and yet they are mourning the deceased teen. They also may be upset by their inability to com- fort their own grieving child (the parent). In a support group with those whose grandchildren died of cancer (usually an anticipated death), grandparents

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identified the frustrations of being unable to process their own grief because they were busy supporting the bereaved parents (their children) (Nehari, Grebler, & Toren, 2007). Some grandparents observed that their children pulled away from the relationship to conserve their waning energy as they grieved their child, leaving the grandparents alone in their grief and a bit estranged from their children. Nehari et al. (2007) suggest that support groups for grandparents validate the grandparents’ grief while also providing them a legitimate place to process their grief.

TYPICAL AND MATURATIONAL LOSSES

Higher Expectations for Responsibility and Independence

Teens experience intensified expectations about academic work and pres- sure to develop long-term life goals. As children enter middle school and high school, more demands are made upon their time, energy, and ability to conform to educational (as well as familial) imperatives. They are treated by teachers and parents as responsible for their own production of work (or lack thereof). Although this is legitimate and helpful to development, the struggle parallels toddler losses: The adolescents embrace their growing independence, but may want to avoid the ramifications of being held responsible for their behavior. To no longer be granted fairly unconditional support—financially and emotionally—is a maturational loss, expressed by adolescents in the ambivalence with which they pursue independent/adult roles while wishing for less pressure.

Aspects of Identity Change

Recent scholarship reveals that a cynical pragmatism has developed among many adolescents in response to growing pressures to succeed. One example is the phenomenon of “doing school” by working only as necessary to attain achievements and good grades, largely discounting more ideal motivations like self-satisfaction (Pope, 2001). These pressures result in losses: of the joy of learning and gaining a sense of self-efficacy through achieving goals for their own sake rather than as a means to an end. Further, aside from “creating a gen- eration of stressed out, materialistic and mis-educated students” (Pope, 2001), these unrecognized losses of self-efficacy and joy may also lead to depression, as when teens express the helplessness of feeling overwhelmed and never able to catch up (JLM McCoyd’s clinical experiences).

Even more commonly, tweens and especially teens must adjust to the maturational losses involved in identity formation. Adolescence is a time of “trying on” different dimensions of identity and then settling into a more consistent identity. Although this is a positive maturational step, it entails loss of the ability to continue to try out different roles and aspects of iden- tity. Further, as self-knowledge grows, teens become aware of the discrepan- cies between the identity they adopt and the ones that are socially valued by society (and/or peers). This brings some back into conformance with social

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norms, as when a teen who experiments with drugs and/or alcohol gets pressure to abstain from teammates within a chosen sport. (These forces for conformity are most efficacious when coming from a valued peer or refer- ence group.) Females may experience a less positive loss due to conformity, often referred to as a loss of voice. This adoption of silence as a safe posi- tion from which to avoid conflict (particularly with males) is documented across many cultures (Gilligan, 1993; Iglesias & Courmier, 2002; Jack, 1991). Mixed messages about gender roles are being negotiated at the same time as mixed messages about whether they are maturing too quickly or not quickly enough. Discrepant messages add to the struggles for teens as they work to consolidate identity.

Another major identity issue arises as adolescents mature and begin to have more support for relationship-building. Individuals may realize that their love interests revolve around same sex relationships rather than the more com- mon heterosexual ones. Although a positive development in self-awareness, it can also lead to secrecy and self-silencing (a form of loss) if the teen does not believe this identity will be supported and valued by those in their social milieu. Further, even if the social group is supportive, teens must decide whether to share this aspect of identity since heterosexist culture makes the assumption of heterosexuality until shown otherwise (McGeorge & Carlson, 2011). Kitts (2005) reports that feeling a sense of difference and fear of ostra- cism can create the circumstances whereby a teen may resort to suicide to avoid the pain of stigmatization.

LaSala (2014) reveals the role of parents in providing support for the recognition of sexuality, and in protecting teens from potential harm. His research suggests that parental knowledge, involvement, and active com- munication can assist gay teens in adopting safer sex practices, suggest- ing implicitly that such teens also have more self-acceptance and self-care. Unrecognized losses involved in identity formation (whether issues such as sexual identifications described in “A Girl Unlike Other Girls” in the read- ing at the end of this chapter, or even identification as the “band geek” or the “jock”) can add to the possibility of acting impulsively out of a fear of ostracism.

Double jeopardy, the tendency to avoid sharing feelings of loss while being deprived of support since others are not informed (Oltjenbruns, 1996), implies that teens may also need support around these maturational and other losses. Even when emotional supports are available, teens may not be forth- coming about the ways losses (ended love relationships, abortions, failures in school, etc.) also bring about the end of a fantasy for the future (Rowling, 2002). These disenfranchised losses are unrecognized and occur at a time when adolescents often are assumed ready to handle their emotions on their own. Although this does not really apply to any age group (humans gener- ally benefit from sharing their emotions with trusted others), for tweens and teens this may be more risky because they believe these thoughts and feelings make them out of the ordinary. Asking adolescents to talk about their feelings directly is often unsuccessful, yet asking gentle, specific questions (What is it like to be working now? How are you coping with your break up?) may allow tweens and teens to open up enough to begin to reveal the painful areas of their lives.

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READINGS

A Girl Unlike Other Girls

Katharine Baratz Dalke

Katharine Baratz Dalke, MD, MBE, is a psychiatrist at the University of Pennsylvania in Philadelphia. Affected by a difference in sex development (DSD), she is actively involved in the DSD advocacy and support community and works clinically with individuals with diverse experiences of sex, gender, and sexuality.

Molly is a 16-year-old teenager living in a small community. An only child, Molly has been adored by her parents from birth, and grew into a healthy, accomplished, and bright young person. However, Molly has been late in maturing physically—she did not begin to develop breasts until she turned 15, and has yet to begin menstruating. When Molly begins to worry that she will never get her period, her parents take her to see the local gynecologist. During the exam, the doctor’s face reveals his surprise at discovering that despite her typical external anatomy, Molly does not have a cervix. The doctor urgently orders an ultrasound and blood test. From the ultrasound, Molly learns that she does not have a uterus or fallopian tubes, and instead of ovaries, her gonads look more like internal testes. A blood test confirms that she has male-typical XY sex chromosomes. The doctor explains to Molly and her family that she has been diagnosed with complete androgen insensitivity syndrome (CAIS), a rare genetic condition in which a baby with XY chromosomes cannot respond to the male hormones, or androgens, produced by the baby’s testes during fetal development. Molly, like other people with CAIS, therefore developed looking like a girl. The good news, the doctor tells her, is that her inability to respond to androgens means that she will never get acne and will always have very little body hair. The bad news is that she must have surgery to remove her testes because they could become cancerous, after which she will have to take hormone replacement.

Molly is shaken by the diagnosis. She immediately feels a deep sense of loss at not having a period, and struggles with this new difference between her and her friends. She wonders how she will explain the doctor’s visits and sur- gery to them. Molly has always loved children, and although she knows that having a family is a long way off for her, learning that she is infertile is shock- ing and painful. Though she has never dated, she also begins to worry whether a future partner might reject her because they will think she is really a boy or because she cannot have children. Above all, the doctor’s comment that “I have only ever read about this condition” reverberates in her mind, and Molly won- ders if she will ever meet someone who knows what this feels like for her.

Molly is one of many people living with a DSD. Also known as intersex conditions or disorders of sex development, DSD are naturally occurring bio- logical variations in the development of male and female sex traits, such as sex chromosomes (XX and XY), internal reproductive organs (like the uterus, ova- ries, or testes), or external sex anatomy (the size and shape of the penis, vagina, or clitoris) in a way that is not typical of standard biological definitions of

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male or female. DSD are relatively rare, affecting about 0.1% to 0.5% of people, and the condition Molly has is even rarer, affecting about 1 in 100,000 people. People may be diagnosed with DSD at any point in the lifecycle. Some manifest at birth with obvious genital difference, in adolescence with a variation from typical puberty, or even in adulthood, with difficulty conceiving a baby.

The biological impact of DSD varies depending on the particular diag- nosis. For people who have a condition called congenital adrenal hyperplasia (CAH), alterations in the hormones produced by the adrenal glands during fetal development can result not only in genital difference, but also in low levels of hormones essential for maintaining blood pressure, and can therefore be life- threatening. Fortunately, most people with DSDs are otherwise healthy; for some people, like Molly, a DSD can result in variations in puberty as well as infertility.

Visible physical variation among people affected by DSD also varies. No person is born with both a penis and a vagina, but some are born with a larger than usual clitoris or smaller than average penis. Some children have a penis where the urethra opens on the underside, rather than at the tip, and some children have genitals with structures that look in between a clitoris and a penis and/or between labia and a scrotum. As people grow up, the mixture of estrogen and testosterone the body produces may cause them to have a combi- nation of usual male and female traits, like breasts and facial hair; others, like Molly, may look totally typical.

The evidence base of the psychological impact of having a DSD as a child, adolescent, or adult, is still emerging and often conflicting. Although many people with DSD do not have diagnosable mental health issues, some do have clinical psychological distress, often related to circumstances apart from the DSD. Regardless, it is apparent that any person with a DSD diagnosis is faced with the challenge of understanding and integrating this new information within social contexts where DSD is often misunderstood.

Adolescence is a time of incredible change, and Molly is first and fore- most an adolescent. Psychologically and socially, teens begin to differentiate themselves from their families. This process requires the exploration of the ado- lescent’s own distinct identity, characterized by strong identification with peer groups and increasing distance from the family. Physically, teens experience dra- matic maturation, and begin to experience and experiment with sexual feelings.

Molly’s feelings of loss can be understood as a result of the way a DSD diagnosis disrupts these developmental tasks. Molly’s diagnosis concerns deeply personal and private parts of herself, and yet circumstances compel her to share the experience of being diagnosed with her parents. Like other teens with DSD, she may need her parents to attend doctor’s appointments or procedures with her. She may find herself having discussions with the doctor and her parents about what the differences in her sex anatomy mean for sexual relationships. Additionally, Molly may feel conflict between a desire to handle the situation on her own versus a wish to rely on her parents to take care of her as they did when she was younger. The diagnosis may also strain the family system in addition to the changes it already faces with Molly’s adolescence: her parents are likely to feel anxious about how their child will cope with the diagnosis, guilty at not being able to protect her from the challenges of the DSD, fearful of disclosing her diagnosis to friends or family, and isolated due to a perception that there may not be other parents to support them.

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A DSD diagnosis during puberty creates a perceived loss of connection with same-sex peers at a time when these relationships are instrumental to identity development. Having learned from her doctor about all the reasons why she is a girl unlike other girls, Molly may interpret the physical changes that her peers experience, like breast and pubic hair growth, as indicators of her difference. For this reason, settings like the locker room can be intensely stressful, and many adolescent and even adult women with DSD who do not menstruate worry about what to do if asked for a tampon. The importance of pubertal changes affecting peer relationships is underscored by the fact that DSD-affected teens who need to take hormones to go through puberty tend to have more problems in peer relationships than those who go through puberty on their own. Moreover, many people with DSD believe that they will never meet someone like them, and though they may feel secure in their gender identity, they may not be sure that they know how to be a woman or man so unlike other women or men. These challenges may be greater for people with DSD who do not identify with the gender assigned to them at birth.

For many people, adolescence also marks a growing awareness of sexual feelings, and the exploration of these feelings is a major aspect of adolescent and human experience. People with DSD are no different; they feel sexual desire, seek sexual relationships, and experience sexual pleasure. Sexuality can be complicated for people with DSD in two major ways: physical and psycho- logical. Some people with visible genital difference at birth may have infancy and childhood surgeries in an attempt to “normalize” the appearance of the genitals. Although surgical techniques have recently improved, many people who have had genital surgery report impaired sexual sensation and enjoy- ment. Some genital difference is managed nonsurgically; in cases like CAIS where the vagina may be shorter than usual, some people use vaginal dilators in anticipation of intercourse. Perhaps even more significant than the physi- cal difference is the psychological impact of understanding that one’s body is fundamentally different and may need to be “fixed” to be sexual. DSD can therefore pose multiple barriers to sexual relationships. These barriers may include a perceived need for intervention before expression of sexuality and a belief that one is not sexually desirable. The rate of lesbian, gay, and bisexual identification appear to be consistent with that in the general population, and just as they may for typical teens, these experiences can additionally compli- cate sexual expression for teens with DSD.

Although American culture does not typically prioritize procreation in adolescence, many people understand puberty as preparation for family for- mation, and conversations about teenage sexuality often focus on pregnancy prevention. Similarly, girls and young women in particular are socialized to anticipate motherhood from early childhood. People with DSD who are infer- tile by virtue of the condition or surgical treatment often experience grief about their infertility, usually at the point of diagnosis. Yet, it is common for people who have known about their infertility from a younger age to experi- ence a fresh sense of loss and grief in adulthood as their peers have children. Otherwise, people with DSD who struggle with infertility are no different than people without DSD who experience a loss of fertility, a nuanced discussion of which is beyond the scope of this chapter.

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Many people with DSD, especially those who have been recently diagnosed or informed of their diagnosis, do not have the tools to be able to determine whether, how, and when to explain to friends what the diagnosis is and what it means. The intimacy of the body parts it involves may create a sense of embarrassment; further, especially where there is visible genital dif- ference or in families where sex is not discussed openly or positively, individu- als with DSD may feel a deep sense of shame and wrongness. Sometimes this shame is reinforced for people by their family’s anxiety over the condition, the fascination with which their medical providers treat them, or a sense of being traumatized by medical treatment. In concert, these factors can cause people with DSD to have a profound sense of loneliness, isolation, or even freakish- ness, a loss of a sense of belonging in the world.

Fortunately, many people with DSD do live happy, healthy, and fulfilling lives, particularly with support and resources to help them understand and process the losses they experience. Mental health providers can help people with DSD first and foremost by evaluating for and treating any associated psychiatric illness, like depression, anxiety, or PTSD. Additionally, mental health providers can model acceptance of the individual and offer validation and normalization of the losses and associated feelings. Helpful interventions include assessment of the understanding of medical facts, practice disclosing the diagnosis to others (including role-playing, and development of language and metaphors for biological processes), and a safe space to discuss issues of gender identity and sexual expression. The therapeutic space can be one in which the individual comes to understand the impact of the diagnosis and allows for integration of the condition into one’s developmental path.

Contact with other people affected by DSD can be vital and even life- saving. This takes many forms, ranging from viewing television programs or documentaries featuring people with DSD to attending support group meet- ings. Groups also offer contact by phone, e-mail, and through social media to provide support that is accessible and on the individual’s own terms.

Molly will find a way to make sense of what she is feeling. To do so, she may use a therapist, work with her parents, or find and communicate with a community of young people with AIS on Facebook and in person. Beginning to tell her story to her friends and family and gaining positive, reassuring responses will mitigate her sense of loss greatly, strengthen her family and friendship relationships, and empower her to seek romantic relationships. Although the loss of her fertility and ability to meet a specific definition of fem- ininity will remain, she will experience all the gains that can come from having a DSD, including a broader community, a richer sense of herself, and a more complex understanding of all the ways in which people embrace difference.

Resources

AIS-DSD Support Group: www.aisdsd.org Advocates for Informed Choice: www.aiclegal.org Beautiful You MRKH Foundation: www.beautifulyoumrkh.org CARES Foundation: www.caresfoundation.org

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Hypospadias/Epispadias Association: www.heainfo.org Klinefelter Syndrome Support Group: www.klinefeltersyndrome.org MAGIC Foundation: www.magicfoundation.org Turner Syndrome Society: www.turnersyndrome.org

Bereavement After Losing Friends to Homicide: Two African American Teen Girls Speak

Celeste M. Johnson

Celeste M. Johnson, PhD is an associate professor of social work at Widener University, Center for Social Work Education. She received her PhD from Bryn Mawr College, Graduate School of Social Work and Social Research. She is a licensed clinical social worker. Her scholarly interests include the experiences of traumatic stress, grief, and loss in African American urban populations.

Marie, Age 16

“Actually, I was going to summer classes then .  .  . and .  .  . one of my friends he actually come in and he was telling me .  .  . and .  .  . I really didn’t know how to react. Because, I mean, I’ve heard about people being killed before and all that . . . and people that I knew .  .  . but not someone that close to me. And being [as] though that she . . . it was just like .  .  . she just gone like that. That made no sense to me, and I think that was one of the hard- est times I’ve ever experienced. That made me think I never know when . . . it will happen to another one of my friends. . . . Like, she was the person doing no wrong. She was actually innocent. It’s something like, well, that means this can happen to any of my friends. So . . . I really didn’t know what to do after that. It just was like I don’t know . . . my emotions kinda were just like . . . ‘I don’t know what to do.’ So, I just cried as a result. I just cried and cried and cried.”

Marie described a situation about 1 year prior to our talking together when a close girlfriend was the unintended victim of a drive-by shooting that was targeted for the teen male to whom Marie’s friend was talking.

Heather, Age 17

“And . . . even if . . . I mean, even if he did . . . it’s a word . . . Did you have to kill him? Was it that deep? That the girl did that. . . . So small. It was so small. Dying is so big. I mean it’s just a big thing. You’re never going to live again. [Becomes teary] . . . over something so small. That it can go so fast . . . at any time . . . like, just anything. . . . Who would have thought like that day, that would have been his last day . . . Just like . . .like that.”

Heather described the loss of her friend to murder, which occurred about 4 years prior to our talking together. A teen girl said that Heather’s friend called the teen girl “the‘b’ word”—meaning bitch. The teen girl told another male friend that she had been disrespected by Heather’s friend. The teen girl’s

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male friend retaliated by shooting and killing Heather’s friend. Though not sure, Heather did not believe that her friend used any major derogatory word. Heather believed that the teen girl’s feelings were hurt because Heather’s friend did not return the teen girl’s romantic advances.

Introduction

Marie (16) and Heather (17), two African American teen girls living in a large Northeastern city in the United States, spoke about their bereavement and feelings after losing friends due to homicide. They spoke to me as part of a proj- ect that explored the adolescent bereavement experiences of African American teen girls who had lost friends due to murder. Marie and Heather attended the same high school, though they were not part of each other’s circle of friends. The neighborhood in which they lived and attended high school was, and remains, a low socioeconomic community challenged by high levels of vio- lence. Marie’s and Heather’s words provide insight regarding the complex nature of losing friends to homicide. Their words, though brief, are revealing. While the words are particular to their experiences, the themes captured in their words suggest the challenges of the bereavement process for teens who grieve the violent deaths of friends. The themes in the narratives of Heather, Marie, and the other participants in the project are captured in the words— sudden, random and unpredictable, senseless, painful, and hard.

Sudden . . . Just like that

Marie and Heather used the phrase “just like that” to characterize the sud- den and violent nature of the deaths and loss of their friends. These three words hold so much meaning. For Marie, the shock that accompanied hear- ing the news that her friend, a peer, had been murdered is apparent. Caught completely off guard, Marie’s statement reflects how she was stopped in her tracks, that this news was an immediate and encompassing disruption to her. In her quote, she describes how she seems to be cognitively and emotionally frozen, as if needing time to absorb what she has just heard. She even says that she “didn’t know how to react.” Traditional bereavement literature sup- ports Marie’s experience of shock as a common reaction to hearing the news of the sudden and unanticipated violent death of someone close (Johnson, 2010; Rando, 1996).

Heather ’s use of the phrase, “just like . . . like that” captures something slightly different. Her words suggest a realization of an ephemeral quality to life. Her words suggest an internalization of the idea that life can be transitory, even capricious. Moreover, Heather ’s words communicate that she has cog- nitively assimilated awareness that this loss is not only abrupt, but also final. She goes on to say “You’re never going to live again,” as she became teary. Her friend will not experience the rest of his life. In both Marie’s and Heather ’s use of the phrase, both indicate that their worlds have been forever changed in an instant, “just like that.” They have become survivor-friends (Sklar & Hartley, 1990) who will never have the real presence of their friends in their lives again.

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Friends are so important during the teen years. Their roles and purpose can be underappreciated. In the interview, Marie spoke of how she and her friend spent so much time together, whether in person—in or out of school— or on the telephone. They laughed together, shared similar interests, points of views, and experiences. They could disagree. Sometimes her friend served as a shoulder to lean on, sometimes a shoulder on which to cry. Her friend functioned as a reality check when they compared experiences, and some- times her friend was her partner in testing limits, whether testing the limits of their behavior or testing and extending the limits of their worlds beyond their neighborhood. Their friendship functioned as a safe platform on which to share experiences, experiment, learn, and practice life skills. They were helping each other shape their lives and identities as they traveled toward young adulthood.

All of those roles and those identifications embodied for Marie in her friend were instantly gone. The emotional connection in real time was gone. The impact of the loss of a friend during the teen years cannot be underesti- mated (Oltjenbruns, 1996; Servaty-Seib, 2009). To experience a friend’s death during these years, and particularly a violent death, can be very destabilizing. When friends die during the teen years, the special roles, purposes, and time together go with them. It takes time for the surviving teen friend to grieve, to mourn, and to work through restoring and restabilizing a differently config- ured life without the presence of her friend.

Random and Unpredictable That made me think I never know when . . . it will happen to another one of my friends. (Marie)

That it can go so fast . . . At any time. Like, just anything . . . (Heather)

Heather and Marie were not unfamiliar with the violence in their neighbor- hoods. Marie even said that she had known of people who had been killed, though never anyone close to her. Even with such awareness, each girl seemed to have a sense of safety in her immediate world of family, friends, and the close environment. Each held a perspective that her immediate world was safe, even with a real appreciation and awareness of the risk in their communities. Their defenses allowed this precarious, contrasting, dual perspective to coexist.

This sudden, violent, and tragic loss of a friend, a peer, someone the same age, however, tipped the scales. For Marie and Heather, this event shattered that precarious balance that served as a protective defense against the excessive stress of an immediate unsafe world. Their perception of their immediate world as safe from harm was pierced, their comfort was dis- turbed. Although not explicitly stated by either Marie or Heather, their own safety was now threatened. Life became more unpredictable, random, and not in their control.

To grieve the death of a peer and friend is to confront the sense of invinci- bility theorized as typical for teenagers growing up in the United States (Elkind, 1967). This sense of invincibility allows teens to feel confident in themselves and their worlds. This allows for “taking risks” and venturing forward try- ing new things moving toward adulthood. It is optimal for teens to cope with

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the stress of their expected biopsychosocial changes against an environmental backdrop that is relatively predictable and safe. For the external world to be in reality unpredictable, unsafe, and out of one’s control adds to the stress of this developmental period.

Senseless That made no sense to me . . . (Marie)

I mean, even if he did . . . it’s a word . . . Did you have to kill him? Was it that deep? (Heather)

These comments reveal how incomprehensible this loss was to each teen girl. The degree to which the homicide of Heather’s friend was so out of propor- tion to what was reported to have occurred leaves her bereft and bewildered. It was thoughtless, illogical, and unnecessary. It was fatal. It was an act, the consequences of which cannot be reversed for either her friend or the perpe- trator of the homicide.

Marie’s statement is multilayered. These ideas, by interpretation, follow from Marie’s statement: It made no sense that gun violence occurred at all. It made no sense that the boy her friend was talking to was so heartless and callous as to pull her friend into the path of the bullet, as he retreated from harm’s way. It made no sense that her friend had to be talking to this person at the exact moment of the drive-by shooting. It made no sense that it was her friend, someone she knew. Her friend was an innocent. It made no sense that bad things could happen to her friend who was a very good person.

Homicide is avoidable. It is a “human-induced” interpersonal act of vio- lence (Barrett, 1996). Marie’s six words, “It made no sense to me,” conveys a belief that the events in life should make sense, should have a certain order. However, existential questions about life are also evident in the characterization of this event as senseless. Marie and Heather realize that they can lose people for no good reason. It is an event to which the question of “why?” has no answer. It reflects a consideration that the world cannot be counted on to make sense any- more, thus planting seeds of distrust, skepticism, and caution about the world.

Painful I just cried and cried and cried. (Marie)

Marie’s words are powerful and poignant. They capture the emotion of the experience, an emotion that has multiple layers. Marie’s statement reflects the sheer devastation and grief that Marie felt about the death of her friend. Heather becomes teary while talking about the senseless nature of the event and her loss after 4 years, reflecting a pain that lasts.

The weight of the emotion captured in Marie’s words seems to hold other losses. Some of these are typical for this age; some are only the result of this experience. As an adolescent, Marie and Heather are already in the throes of the loss of their childhood. Biologically, psychologically, and socially they are transitioning to young adulthood. However, the words also reflect the over- whelming tasks that mourning the loss of a friend who was murdered entail.

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They also experience a loss of their assumptions that their immediate world is safe and predictable.

Hard I think that was one of the hardest times I’ve ever experienced. (Marie)

Dying is so big. I mean it’s just a big thing. You’re never going to live again. [becomes teary] . . . over something so small. (Heather)

Marie characterizes the loss as hard, one of the hardest times she had experi- enced. Whereas the word painful describes the emotions connected to this loss, the word hard seems to have a broader scope. It seems descriptive of the work entailed with the bereavement process toward healing. Heather’s words “so big” capture the enormity of it all. Not only did Marie and Heather have to heal from the emotional pain of the loss, but they also had to grieve and reconfig- ure a life without their friend. They had to reconfigure assumptions about the world that were more realistic. While typical grieving involves anxiety about loss and separation and longing for connection, the cognitions of the violent death may be graphic and disturbing. The anxiety from these cognitions may encourage distancing from the associated grieving process. Complex emo- tional and cognitive work has to occur to heal in the face of these colliding pro- cesses. It is hard work for teens to heal, restabilize, and continue on with life.

Conclusion

Heather and Marie were resilient teenagers. It had been 1 year after Marie’s friend was killed and 4 years after Heather’s friend was killed when I talked with them. Neither teen had received professional intervention. At the time of the interviews, both Marie and Heather were achieving in school, had school friends, and were participating in school activities. They had friends outside of school with whom they were involved in organized and more informal activi- ties. They each had good relationships with their parents whom I met in the pro- cess of getting parental permission for the girls’ participation in the project. They both volunteered to talk with me about their experiences and were so open.

Both Heather and Marie describe a bereavement in which the grief, loss, and overall mourning experience was hard. While the homicides of their friends were tragic and traumatic, each described a bereavement process that, by description, fell within an uncomplicated bereavement range. They did not describe reactions that reflected posttraumatic symptoms or complex bereave- ment. Of course the amount of time since the loss and their telling of their experience might shape their descriptions.

Although Marie and Heather described an uncomplicated bereavement process, the bereavement process was, nevertheless, very stressful. It involved an “out-of-time,” violent death of a friend which, developmentally, is not usual for the age. This stress taxes the typical stress anticipated for the adolescent life phase.

The latest published data from the CDC indicate that homicide is the leading cause of death for young African Americans in the 15- to 24-year age range (CDC, 2010). With this high youth homicide rate for young African

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Americans, often living in low socioeconomic communities, there are numer- ous survivor-friends who need attention. Sensitive and attuned adults from various walks of life serve as major sources of support. Also, there are formal group interventions designed for this population (Salloum, 2004). It is impor- tant to appreciate the complexity of bereavement for teens after the violent death of a friend. In the face of this complexity, teens do, nonetheless, con- tinue on with their lives. Heather and Marie continued on. Heather, Marie, and other teen girls in the project were resilient, demonstrating an ability to productively continue on with their lives, and they expressed a commitment to hold their deceased friends in their hearts and memory.

Sophie’s Move to a Residential Care Facility

Bonnie Fader Wilkenfeld

Bonnie Fader Wilkenfeld, PhD, MSW, LCSW, is a licensed clinical social worker and a recent graduate from the doctoral program at the Rutgers University School of Social Work. Dr. Wilkenfeld has extensive experience working in a variety of medical and educational facilities, most recently as a social work clinician in a school, resi- dential facility, and hospital for children with multiple physical and developmental disabilities. She enjoys pastel painting, reading, and spending time with her family in her free time.

Background

Cerebral palsy (CP) is a condition comprised of a group of permanent disorders which impact movement, tone, and posture. This condition occurs in the devel- oping fetal or infant brain and causes functional activity limitations (WHO, 2001). CP is manifested in a heterogeneous manner across individuals; hence, the impact on functioning for affected persons can vary greatly. Oftentimes the motor disorders of CP are accompanied by an array of comorbid conditions, such as sensory, cognitive, language, feeding, and behavioral issues.

Many families struggle with the burden of care as their child with devel- opmental disabilities of a medically complex nature (such as those associated with CP) age and grow physically larger. When first diagnosed, it is difficult to imagine the trajectory of development for these children. The  advent of early intervention has greatly improved the functional abilities of children born with developmental disabilities. When children grow and it becomes difficult to manage their activities of daily living and education within the family, parents must consider the possibility of moving the child to a resi- dential care facility (RCF). Arriving at the decision to place one’s child in an RCF is a difficult, painful process for families, and invokes guilt and a sense of loss of future hopes for functional rehabilitation of their child.

Although RCFs differ, the RCF in this case, in addition to a residen- tial component, is comprised of a specialized school and hospital, as well as medical clinics that provide for the needs of facility residents as well as individuals with developmental disabilities (IWDD) in the community at

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large. An interdisciplinary staff is employed by the RCF to maintain the health and well-being of the residents. These include doctors, nurses, personal care assistants (PCAs), social workers, therapists, teachers, and administrative personnel. Many families desire our specialized level of care, therefore the wait-list for admissions is quite long. Families expect to wait several years for admission. In addition, the facility does not accept adult admissions (aged 18 and over). As a result, some families may place their child on the wait-list before they are emotionally ready to have their child move.

Sophie’s Story

Sophie is a 16½-year-old girl diagnosed with spastic quadriplegic CP (indi- cating that all of her limbs are impacted by the condition), cortical blind- ness, and hearing impairment in one ear. She has an adapted wheelchair but can, with support, use an adapted walker to ambulate short distances. She has the ability to echo some speech but does not generate functional speech to indicate her desires or needs. She generally uses facial expressions and vocalizations of pleasure or displeasure to indicate preferences. Cognitive testing indicates that she functions at the developmental level of a 12-month- old. She is incontinent and wears an adult sized diaper. Sophie has an active seizure condition controlled by seizure medications that can leave her lethar- gic at times.

Sophie’s parents, Sharon and Dan, first placed her name on the wait-list at age 14. After 2½ years they were informed that Sophie’s name was at the top of the list and that she would be admitted to the RCF in the near future. At that time they came in for a preadmission assessment and opted to imme- diately enroll Sophie in the school program as a day student to start getting her familiar with the staff and surroundings. I met with Sharon and Dan while Sophie had a chance to interact with the other students in her class. Sharon became tearful as she discussed having her daughter move to the RCF. She and Dan clutched each other ’s hands as they admitted their con- cerns for Sophie’s safety and well-being; fearful that staff would not under- stand Sophie’s needs and that due to her inability to verbally express herself, staff would be unaware of any issues from Sophie’s perspective. Sharon spoke of regret and a sense of failure that they could not manage Sophie’s needs appropriately any longer. Both parents committed to being actively involved throughout the transition process to facilitate Sophie’s adaptation to the RCF.

About 2 months after Sophie began the school program, a bed became available and Sophie’s family was told that the RCF could admit her. They accepted the admission. Sharon and Dan are the parents of three children; Sophie is the middle child. Their oldest child, a senior in high school, was in the process of sending out college applications at the time of Sophie’s admis- sion to the RCF.

Despite being physically and chronologically an adolescent, cognitively Sophie functions at the level of a 1-year-old. Many misperceptions persist regarding the abilities of children with severe cognitive impairments to expe- rience and process loss and to grieve (Sormanti & Ballan, 2011). Children with cognitive impairment have been deemed unable to form the emotional bonds

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required to experience loss and grief; hence, some believe IWDDs are not able to experience these emotions (Brickell & Munir, 2008; Dodd, Dowling, & Hollins, 2005). Research has shown that this is false; children with cogni- tive impairments do have the capacity to grieve (Brickell & Munir, 2008) and should be assisted to express their grief (Dodd et al., 2005).

Placement of one’s child in an RCF precipitates loss for the child on many different levels. Removal from their family of origin, relocating to a new residential environment, interacting with a myriad of people who (at least initially) are unfamiliar to them, and exposure to different care regimes invoke traumatic (Clements, Focht-New, & Faulkner, 2004) and disenfran- chised (Doka, 1989) losses and adjustment issues. Compounding and com- plicating this situation is their inability to express emotions in conventional manners (Clements et al., 2004). As a result, caregivers may often fail to make the connection between certain behavioral outbursts, somatic complaints, sleep disturbances, and aggressive or self-injurious behaviors and a grief reaction.

For Sophie, who is blind and has hearing difficulties in addition to her cognitive and physical impairments, a relocation of this nature was quite traumatic. Sophie acted out behaviorally in her classroom after her residen- tial admission. She made violent rocking movements and loud vocalizations, oftentimes disrupting the class. In addition, her body reacted to the different dietary regime. Having been used to smaller amounts of, and more frequent opportunities for, fluid intake when she resided at home, her bladder capac- ity was diminished. Sharon and Dan would come to visit and frequently find Sophie sitting in a wet diaper. They were initially angry and frustrated as they sought a way to work with the interdisciplinary team to understand why this was the case and to develop a solution.

After careful investigation and several team meetings with the family, it was determined that Sophie’s bladder was not large enough to accommodate the regulated amount of fluids as per her dietary orders. Children at the RCF are on strict regimens in accordance with medical and dietary specifications. However, Sophie needed to have her fluids increased in a slow, incremental manner until her bladder stretched and could better accommodate the volume. Many team meetings were required and strict adherence to a more frequent diaper check schedule were implemented until Sophie’s bladder enlarged.

Sharon and Dan also provided information about Sophie’s preferred activities. Music, in particular country music, seemed to be a favorite. The family was asked to supply a list of favorite country tunes along with a CD player and head set so that Sophie could have access to her favorite music as a reward during school for positive behaviors. This strategy was also employed on her residential unit to provide comfort as she became more familiar with her new living environment. Over time, her bladder size increased and disrup- tive behaviors decreased. Sophie was able to adjust physically and emotion- ally to the loss of her home environment.

Family Adjustment

Sophie’s parents appear to have a mutually supportive relationship and to share common long-term goals and expectations for Sophie. They utilize

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humor as a coping defense and are very accepting of Sophie’s disabilities. Despite several years on the wait-list, the availability of a bed for Sophie was a shock for the family. Sophie had been an integral part of family life for 16 years and her transition to a residential facility was difficult to accept. In addition, Sophie’s older sibling was leaving for college in the fall, so there were addi- tional and significant changes in this family’s structure. This family was deal- ing with multiple losses.

When they decide to place their child in an RCF, families must deal with loss of control and guilt. Institutional care is defined by interactions with many caregivers, a need to adhere to strict schedules and regimens, and all that goes along with sharing a room with one or two other people. Immediately after admission, many families struggle with remorse and doubt. For this family, additional stressors included their oldest child going away to college. Sharon was losing two children at nearly the same time! Worries about Sophie, their “child with disabilities,” leaving for residential placement and its attendant restrictions were an ironic counterpart to their concerns about their “child without disabilities” leaving for college and its sudden freedom and independence. For families accustomed to overseeing and managing much of their children’s day-to-day needs, such adjustment is quite challenging.

Interventions

Social workers assisting children and families through RCF placement should keep in mind that (regardless of time spent on the wait-list) it is always a shock and a traumatic event for the family when placement is finally offered. Families should be educated about the team approach and be apprised of the need for a “settling-in” period. Some recommendations to help the initial tran- sition process to placement in an RCF include:

1. Coordinate at least one preadmission meeting with the family and child including a comprehensive team assessment of the child’s residential care needs.

2. Coordinate a postadmission meeting shortly following residential admis- sion to check in with family and team about any emerging adjustment issues.

3. Prioritize consistency in caregivers and routine as much as is possible given the realities of working with staff on several shifts.

4. Include the family and child as part of the treatment team for planning/goal setting and problem-solving purposes.

5. Offer the family the opportunity for peer support. Provide a contact list of other families who would be willing to mentor the new family and help them navigate various issues that may be encountered in adjusting to the placement.

6. Develop rapport with family members through provision of updated reports on progress, interfacing with community agencies on their behalf, and assisting the child to maintain contact with them through Skype and assisted phone calls. This is even more important for families who are not able to visit on a regular basis.

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7. Provide ongoing supportive counseling to parents and encourage reinforce- ment of the parent’s partnership and other roles in their lives.

8. Offer parents the opportunity to regain a sense of control by partnering with the RCF administration through creating or joining a Parent Advisory Committee or fund raising group for the RCF.

Summary

The decision to place a child with multiple disabilities in an RCF is never an easy one. The family struggles with guilt, loss, and anger. The child is thrust into an unfamiliar environment; this situation is further complicated by cogni- tive and sensory deficits that hamper understanding of the change. Helping a family and their child successfully transition involves clinical and concrete interventions on the part of the social worker. Partnering with the family and empowering them to regain control by becoming more involved in facil- ity functions can ease the long-range adjustment process. The social worker becomes the liaison among the family, child, and the interdisciplinary team in negotiating fruitful communications and implementing problem-solving strat- egies. In addition, work needs to be accomplished with the child regardless of their cognitive capacities by first, becoming aware of their nonverbal and behavioral cues and second, assisting them to effectively express themselves and cope with their new residential placement. The losses of both the child and her family need to be identified and validated to allow them to mourn and to adapt to the changes.

SUMMARY

The readings that conclude this chapter bring into sharp relief the developmen- tal aspects of grief and loss in adolescence. The unrecognized losses involved in identity formation are crucial aspects of loss at this age. Whether the strug- gle is to feel “normal” or to process difference from peers, adolescents are chal- lenged with developing a sense of who they are. They are poised between the ability of younger children to move rather fluidly in and out of active grieving and the more adult-like experience of extensive periods of time in the active grieving stages of the dual process. The tendency toward “double jeopardy,” and its paradox of needing more support yet being unwilling to reveal one- self, leaves adolescents particularly vulnerable at a time when depression and impulsiveness may be part of normal development. Interventions are finely tuned to engage adolescents without having them feel too exposed, require strict confidentiality, and attention to trust-building, while also encouraging them to make use of family, friends’, and other support. In short, just as the adolescent is in a liminal position between childhood and adulthood, the prac- titioner must be poised between the nurturing and active intervention posture one adopts with children and the more peer-like stance one may take with

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adults. The intensity and malleability of adolescence make it a fruitful and exciting time to help teens as they make use of the growth opportunities inher- ent in losses of all kinds.

DISCUSSION QUESTIONS

1. How has the experience of coming out as LGBTQ changed in your geo- graphic or practice area over the last decade? How might that affect identity losses for individuals who identify with one of these categories?

2. How might schools develop services for teens who have experienced the death of friends so that they can be delivered as support that is not stigma- tizing within the school environment?

3. Discuss with a small group the ways you could encourage teens to reveal that a friend/peer may be considering suicide. How might that process work to assure that the at-risk teen gets intervention in a respectful manner and that the revealing teen is not ostracized?

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SIX

Emerging Adults

Michael was down and anxious. He felt like he was doing everything right, yet here he was at 24 with a college degree, having difficulty finding a “real” job, and living in his parents’ home. He had moved five times in the last 6 years—and was right back where he started. His girlfriend of 5 years was also back at her parents’ home, making it hard to figure out how to have intimate time together as neither set of parents allowed them to sleep together even though they shared an apartment during their junior and senior years of college. At times Michael was energized and busy sending his résumé to companies likely to hire people with his expertise, and at other times he was just angry. His parents seemed to pick those times to ask how the job search was going or why he had not looked for his own place to live, and he tended to lash out in reply. When he was at college, he almost missed them and looked forward to seeing them, but he now felt under their thumbs again. He  rebelled by refusing to answer questions or tell them what he was doing, and then recognized this was an immature reaction to the difficult situation of living with them after having been more independent.

Many of his friends had weathered similar circumstances, finding that once in a job that paid a living wage with benefits, they could move out and “really start their lives.” Michael felt like he was marking time until a real job gave him the sign to propose to his girlfriend and start thinking about an adult life. For now though, friends at the bar and videogames “called” him at least as much as buckling down to a job hunt.

OBJECTIVES

After reading this chapter the reader will be able to:

■ Describe the changing societal circumstances that led to the creation of “emerging adulthood” as a distinct developmental life stage, and identify its main task.

■ Identify how emerging adults are affected differently than younger and older people by off-time and other losses.

■ Discuss how technology generally and social media more specifically are involved with loss among emerging adults.

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DEVELOPMENTAL STAGE: ADULT SUFFICIENCY OR INSUFFICIENCY

In 2000, developmental psychologist J. J. Arnett (2000) coined the term “emerg- ing adulthood” to better define the ambiguous period between adolescence and adulthood, encompassing roughly ages 18 to 25. Arnett justified this recon- ceptualization of development by noting how marriage, childbearing, and career formation had gradually moved to older ages in Western, industrialized nations as extended education and adolescent dependence had taken hold. He also observed that this life stage might extend into the late 20s under con- ditions of persistent economic weakness, hypothesizing that developmental stages are tied to the economy (Arnett, 2004). By 2007, when the U.S. sub-prime lending crisis triggered the Great Recession, his term was widely accepted.

Arnett’s (2004) conceptualization included five features that provided a rationale for why emerging adulthood is a separate life phase, not merely a transition: identity explorations (continued and broadened from adoles- cence); instability (multiple moves/jobs); self-focus; feeling in-between; and anticipating many possibilities. Although these are features of adolescence and can be found in adulthood, they are most frequent and intense among those between 18 and their mid to late 20s. Emerging adulthood character- istics are creeping into the 30s as years of chronically high rates of unem- ployment and sub-employment among young people (from 2008 through at least 2015) seem to support Arnett’s hypothesis about the relationship between development and the economy.

Biological Development

Neurobiologists assert that brain maturation is not complete until the prefrontal cortex is fully integrated and executive functions well established— a task most believe occurs at approximately age 25. As indicated in the Tweens/Teens chapter, adolescence is a time of tremendous neurobiological change as the hypothalamic-pituitary-adrenal axis evolves, the dopamine system is sculpted, and pruning and integration of the prefrontal cortex occurs (Brenhouse & Andersen, 2011; Ernst, Romeo, & Andersen, 2009). This sets the stage for emerging adulthood as most people complete these pro- cesses between 18 and 25. This coincides with more white matter production as myelination occurs in the brain at cortical and subcortical levels and gray matter is pruned (Sturman & Moghaddam, 2011). Functionally, the brain becomes integrated to be Flexible, Adaptive, Coherent, Energized, and Stable (FACES) by the time these changes are completed (Siegel, 2012). These white and gray matter changes in the brain correspond with the movement from the emerging adult’s initial search for novelty and intensity, and higher risk for addictive behaviors and mental health problems, and a calming once the brain changes are accomplished (Weiland et al., 2014).

Psychological Development

Development in emerging adulthood blends the tasks of adolescence and young adulthood, and represents a discrete phase of life with the primary

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task of movement toward self-sufficiency (Arnett, 2004, 2007). No longer is this seen as the typical time for establishing an intimate relationship and “settling down”; instead, it is viewed as a time of relationship exploration, occasional exploration of gender and attraction identities, and a time of hia- tus where those who marry are out of the norm. Expectations of lucrative employment and an independent household were declining due to the pro- longed nature of adolescence (Arnett, 2007), but with the Great Recession emerging adults moved back home after college in ever increasing numbers (Davidson, 2014). Many of the expectations of adolescent development are now pushed off until age 25 or later. Arnett (2007) classifies the subtasks of emerging adulthood as (a) accepting responsibility for oneself, (b) mak- ing independent decisions, and (c) becoming financially independent, and notes that this is a time of great instability and explorations of love, work, and worldviews.

Marcia’s (1966) older terms of identity development remain relevant when describing the possibilities of emerging adulthood. It is often a time of moratorium (a time of exploring identities yet not committing to one). It can also be a time when Marcia’s other identity processes may function including: foreclosure (commitment to an identity without much explora- tion), identity-diffusion (characterized by avoiding exploration and com- mitments related to identity), or achieving identity (following exploration, commitment to a stable identity). This developmental period includes many possibilities for identity development as emerging adults try different iden- tities (and the social groups that support them), leaving some while main- taining others.

Social Development

Social scientists have also reconsidered the span of early adulthood, recognizing that society will need to “revise upward the normal age of full adulthood, and develop ways to assist young people through the ever- lengthening transition” (Furstenberg, Kennedy, McLoyd, Rumbaut, & Settersen, 2004, p. 34). Popular culture has taken up the notion of “quar- ter life crisis” to mirror “midlife crisis” and describes the time around age 25 as one of feeling depressed and as if life’s options have thinned out. The popular site Buzzfeed has a tongue-in-cheek quiz about quarter life and its discontents (www.buzzfeed.com/jessicamisener/10-signs-youre-having- your-quarter-life-crisis). This speaks to the maturational losses emerging adults feel as they lose the socially sanctioned dependence of adolescence without feeling fully adult (Arnett, 2000). The Huffington Post has devel- oped a HuffPost, “The Quarter Life Crisis,” at www.huffingtonpost.com/ news/quarter-life-crisis for daily stories about the challenges, ennui, and frustrations of life as one approaches 25, chronicling the widespread sense of inadequacy, in-betweenness, and sense of loss in comparison to previous generations. Emerging adults’ explorations of love, work, and worldview lead to the losses inherent in instability and insecurity. The constant transi- tions characterize emerging adulthood and set the stage for the experience of loss in its other forms.

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LOSSES EXPERIENCED BY EMERGING ADULTS

Death Losses

Just as the tween/teen life stage is characterized by new understandings about death and a somewhat sentimentalized view of it, the emerging adult stage is often still set in a romanticized view of death that is often mingled with chang- ing spiritual and religious views (Power & McKinney, 2013). As the evocative title “From ‘worm food’ to ‘infinite bliss’: emerging adults’ views of life after death” (Arnett, 2008) indicates, emerging adults have a range of views about death. In a study of emerging adults’ views of “what happens after death?”, only the 25% who said they believed in heaven and hell were strongly affili- ated with a specific religion (Christian) while 15% believed in heaven only and an equal percentage believed there was some type of existence after death, but were unable to define it. Although 21% said they had no idea what hap- pened after death, 11% believed in no afterlife (“worm food”) and another 13% believed in a return to an energy source or reincarnation. Notably, Arnett com- ments that the emerging adults’ responses “are often rich in insight and irony” (p. 241) in contrast to prior findings with teenagers, who were reported to be “remarkably inarticulate” on similar topics.

When coping with the death of a loved one, most emerging adults feel that their “belief in a just world (BJW)” has been violated. Lerner (1980) defined belief in a just world as “a theory of justice that has as its basic premise the notion that people get what they deserve and deserve what they get” (p. 512) and has since theorized that it helps individuals protect them- selves from a sense of threat or death anxiety (Lerner, 1997). BJW seems to be an outgrowth of a sense of safety in childhood and young adolescence and evolves idiosyncratically through exposure to life events (Dalbert & Salley, 2004). Taken to an extreme, BJW has been associated with stigmatization, vengefulness, and judgmental attitudes, but in moderation is associated with a greater sense of well-being, more effective coping, and less intense negative emotion (Lench & Chang, 2007). Surely the death of a close loved one, especially unexpectedly, would cause a reworking of a belief that the world is just and bad things only happen to bad people. Researchers consid- ering what happens when Just World beliefs are violated suggest that tem- porary accommodation to a sense that the world is unjust is expected. They recognize that the world is not always just and may even expect bad things to happen to good people, themselves included, with a subsequent rise in a sense of vulnerability. However, such individuals may be at higher risk for longer-term maladaptive coping after trauma and loss (Lench & Chang, 2007). Especially on first encounter with death, grappling with the injustice of the world (and the secondary loss of security that entails) may be a dif- ficult challenge for emerging adults.

Death of a Parent

An emerging adult’s sense of injustice may be particularly heightened by the off-time loss of a parent. As noted in Chapter 1, off-time losses are challenging because few peers are coping with similar issues. This leaves grievers without company in their grief, and without models for how to grieve such a loss.

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Accompanying this challenge, parents and emerging adults may have given mixed signals about the degree of adult responsibility and readiness for independence that has been achieved, and a parental death before these issues are clarified can leave emerging adult children uncertain as to their status as fully functioning adults. Prior to a death, communication by par- ents to emerging adults about their developmental status may take the form of indicating new responsibilities. Research indicates parents hold emerging adults newly responsible for finances (“When my first credit card bill came in the mail, my mom handed the bill right to me and walked away” [Jablonski & Martino, 2013, p. 8]), as well as responsible to the family (driving siblings, etc.), yet most do not expect full-fledged self-sufficiency. Although parents communicate awareness of emerging adults’ more mature status via such actions (Jablonski  & Martino, 2013), they do not seem to expect emerging adults to operate without the safety net of the family of origin. The death of a parent is thus not only an emotional loss but an untimely threat to mate- rial security.

Bagnoli (2003) explored loss narratives with a sample of ten individuals ages 16 to 26 and found that death losses involved a reassessment of identity, a key developmental feature of emerging adulthood. Many of her interviewees reported internalization of qualities of the deceased parent, with a clear sense of accepting a new aspect of identity and experiencing resulting comfort. She frames this within Markus and Nurius’s (1986) “possible selves” concept and speculates that the deceased parent provided a template for a possible self. This mirrors findings that continuing the bond with parents/loved ones via sensing them as role model, sensing their situation-specific guidance (help with a decision), utilizing the value-set of the deceased and/or internalizing the memory of the deceased are all ways of creating the inner-representation of a deceased parent (Marwit & Klass, 1996)

Because “emerging adult” is a new category of analysis, much of the rel- evant literature comes from earlier studies of youth and late adolescence, yet even this literature is surprisingly quiet about the death of a parent. Newton (2012) explored the coping and support needs of emerging adults after the death of a parent, noting that most emerging adults still rely heavily on their parents for financial, instrumental (concrete help with chores/needs), and emotional supports. She found that most reported coping with paren- tal loss by throwing themselves back into school or work quickly, yet she observed as well that “old coping mechanisms were not quite enough” (p. 48). Her respondents reported coping through exercise, strengthened reli- gious affiliations, yoga and talking with others. Respondents whose parent had died more than 5 years previously were considerably farther through their grief than those who had experienced the death more recently. Many of the latter still felt that the loss profoundly shaped life in the present. Despite that, none of the 10 participants relied heavily on the surviving parent or family of origin as their primary support, which as Newton observes, fits with the developmental need to become more independent of their families of origin.

Carlos (2014) suggests that therapists working with emerging adults who are parentally bereaved may find useful Worden’s Four Tasks of Mourning. She advises close attention to issues of termination and helping emerging

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adults recognize the on-going nature of grief (to “avoid the illusion of an end to grief”) and the tendency toward sudden upsurges of grief (SUGS), seem- ingly her version of Rando’s (1993) subsequent temporary upsurges of grief (STUG) reactions (pp. 64–77). Newton (2012) noted that in her small sample, six of the seven women attended individual or group therapy (none of the three men did) and she opines that this may be a gendered reflection of chang- ing norms about the acceptability of therapy in such circumstances. She also notes that the support at school or work (defined as acknowledgment of the loss, expressions of concern, and flexible responsibilities) was critical in helping emerging adults cope.

Since Edelman’s (1994) book Motherless Daughters, people have become sensitized to how powerful that particular loss can be. For emerging adults working on identity processes, it seems all the more powerful. Schultz (2007) interviewed six women ages 18 to 25 and found that half of them had consid- ered suicide and all of them identified significant ways their sense of identity had changed as a result of their mother’s death. Most cultivated relationships with older women who could function as maternal figures and also worked to make themselves aware of the parts of their mother’s identity they could see in themselves. Pearce (2011) also found that women felt their worlds and senses- of-self interrupted by the death of their mother: Susan, one of a pair of twins whose mother died when they were 18, reported the ambivalence with which they experienced her death. Susan enjoyed the freedom that came with not being monitored and told what to do, but was also discomforted by the fact that she could not go to university and “suddenly you’re on your own that’s it, you’ve gotta work, you’ve gotta earn, you’ve gotta support yourself. And there are no other options” (Pearce, 2011, p. 41). Given that emerging adults live on the frustrating verge of a fragile independence, such ambivalence may be more prevalent than commonly reported.

The influence of culture in the experience of parental death must not be overlooked. In an autophotographical study, bereaved, Korean emerging adults reported more anger at the deceased parent and more need to pro- tect the survivor from burden than do bereaved emerging adults in Western nations. The respondents who were bereaved when still children reported a high degree of embarrassment and shame related to the Korean stigmatization of single parent families that extends even to the survivors of a parent’s death (Yang, 2012). Additionally, children, especially adult children, are expected to witness their parent’s last breath; for those who were unable to do so, extreme regret is part of the culture of mourning (Yang, 2012). Competent support of grievers requires exploration of the cultural norms in which the parental relationship is embedded, including duties to parents in death and dying and mourning expectations.

Many emerging adults are in college, where the call to support bereaved students was sounded at least as long ago as the mid-1980s (Zinner, 1985) and has been made consistently in the intervening years (Fajgenbaum, Chesson, & Lanzi, 2012; Streufert, 2004). Although this is often couched within the more recent need for such services when a campus is affected by murder/suicide, colleges and universities should ensure the availability of grief counselors able to provide support, education, and counseling for all bereaved students in many circumstances, including after the death of a parent.

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Death of Friends/Lovers

The paucity of academic literature about the death of a parent in emerging adulthood is even more obvious concerning the death of a friend or lover. We  know that friends, peers, and intimate partners take on more emotional salience during adolescence, and Arnett (2007) confirms that these attach- ments remain highly influential during emerging adulthood. In a study of 25 men ages 19 to 25 who had experienced the sudden death of a male friend, Creighton, Oliffe, Butterwick, and Saewyc (2013) found that the majority of the emerging adult men in their sample reported “manning up” and avoid- ing overt emotional expressions other than anger, despite the fact that they provided photos indicating deep emotional responses to their friends’ deaths. Many of their subjects asserted that men’s stoicism is “inbuilt” (p. 38) and they attributed this not only to social norms “taught from an early age: don’t cry, it’s not your job” (p. 38), but also to biology: “it just won’t connect with tear glands and I think that’s just how guys are” (p. 38). As the authors note, this has implications for intervention. Taking photographs for the research inspired the bereaved men to deep expression, suggesting that clinicians and supporters need to recognize that bereaved, emerging adult males may seem stoic, but experience life changing thoughts and feelings that resist verbal expression. Creighton et al. (2013) found that most emerging adults in their study inte- grated the friend’s death into their identity by becoming more adventurous (embracing life), more fatherly (being more protective and responsible), or experiencing a type of rebirth the authors describe as the Lamplighter identity as they now “saw the light” (p. 41) and worked to catalyze themselves and others toward good.

As Johnson’s reading indicates in Chapter 5, female teens and emerg- ing adults tend to feel similar anger in the face of sudden death, yet tend to be more likely to cry, engage in ritual or memorial, or otherwise feel freer to express themselves emotionally. Yet she also notes that many of these indi- viduals feel their grief to be disenfranchised: Family members and siblings are viewed as legitimate grievers while grieving friends are relegated to a sort of “also ran” status. A study that examined grief reactions of nursing students after the sudden death of a classmate indicates that these nurses exhibited “morbid anxiety, helplessness after death, fear of disappearance, and think- ing of one’s own future” (Jiang, Chou, &Tsai, 2006, p. 279). Yet, the nursing students rarely shared their feelings of grief with others. It is entirely possible that the “double jeopardy” theorized for adolescence extends to some degree into the emerging adulthood life stage.

In a review of youth suicide, contagion effects were explored and found to extend to approximately age 24, after which contagion does not appear to create clusters of suicides (Gould, Greenberg, Velting, & Shaffer, 2003). Some suggest that contagion and clustering are not as prevalent as people have suggested (Haw, Hawton, Niedzwiedz, & Platt, 2013). Either way, efforts to prevent suicide in tweens through emerging adults have ranged from social media outreach (www.itgetsbetter.org) through identification of the traits and structures that promote emerging adults’ use of supportive help to avoid sui- cide (Wilson, Rickwood, Bushnell, Caputi, & Thomas, 2011). The strong pref- erence for autonomy as a function of emerging adult development is viewed

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as an impediment to getting emerging adults to make use of therapeutic help when bereaved by suicide or when considering suicide (Wilson et al., 2013). Educating peers to provide informal assistance and monitoring, while also urging use of formal help resources, are suggested as important strategies for assisting emerging adults.

Nondeath Loss

Although emerging adults experience many nondeath losses, many fit within the category of typical or maturational losses and will be addressed there. Here, the nontypical loss of chronic and life-threatening illness is addressed due to its significant challenges in emerging adulthood.

Chronic and Life-Threatening Illness

Emerging adults enduring chronic illness need to receive care at the point in their development where asserting independence is extremely important. This is challenging to them and to their caretakers. Emerging adults coping with life-threatening illness approach death and adulthood at the same time, and their challenges are much different than those of older adults facing imminent death. Because emerging adults tend to hold “Just World” ide- ologies (Lerner, 1980, 1997), they may blame themselves or others for their condition. They often assume that bad outcomes result from “being bad” (a premise of Just World thinking), failing to grasp that such moral symmetry is rare.

Emerging adults not only want to believe in a just world, but also may be young enough to believe that all events are subject to control. They may therefore attribute their illness to “something bad that was done,” such as poor health habits, or assume that a physician missed a telling symptom earlier in life. Laying blame allows them to maintain the illusion of pervasive control that most people see through only as they age into adulthood.

When emerging adults are critically ill or dying, their care needs usually take precedence over developmental needs. Hospitals may put them on wards with children or much older adults with whom they have little in common. Although most emerging adults remain connected to their family of origin’s home, providers must pay special attention to assessing the type of physical care provider and place where a final illness plays out so that the emerging adult has some sense of control in the home care, palliative care, or hospice planning. Grinyer and Thomas (2004) contend that despite most emerging adults’ preference for a home death, “it cannot be assumed that the nature of the relationship between parent and adult child is such that the latter can eas- ily slip back into childhood dependency in the parental home in the face of a life-threatening illness” (p. 128).

Research on emerging adults with chronic illness indicates that they “value qualities relating to personal characteristics of the provider as more important than those relating to the physical environment of the provider” (Farrant & Watson, 2003, p. 177). Typically, emerging adults who are ill want to discuss a wide range of health topics, including their mental health, yet health

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providers are often reluctant and avoid the broader health and mental health context. Farrant and Watson (2003) found a major gap in planning for services that transition the older teen to adult services; as “early initiation of transition planning is associated with increased likelihood of success” (p. 178), health care providers need to address this issue. They urge providers to be open to the broader health concerns of emerging adults.

DEATH OF AN EMERGING ADULT AS EXPERIENCED BY OTHERS

While emerging adults sometimes die of diseases like cancer (5% of all deaths of those between 15 and 24) or heart disease (3%), the vast majority of deaths among emerging adults are due to unintentional injury (most often—47%— related to motor vehicle accidents), homicide (16%) or suicide (12%) (National Center for Health Statistics [NCHS], 2010). Notably, for nearly all causes of death, males are much more likely to die than females, with the unintentional injury category twice as high, homicide six times as high, and suicide five times as high (NCHS, 2010). As indicated above, friends are usually from the same age range and often experience not only grief but life-changing reassess- ments of identity as a result.

There is strong evidence that about 10% of adolescents consider suicide, carrying that ideation into emerging adulthood (Rueter, Holm, McGeorge, & Conger, 2008). Although emerging adults report more suicidal ideation than older adults, and have fewer religious and moral sanctions protecting them from suicidal impulses, they are less likely than older adults to successfully take their lives (Segal, Minic, Coolidge, & O’Riley, 2004). As suicide tends to leave survivors with some degree of self-blame (www.allianceofhope.org/; www.afsp.org/local-chapters/find-your-local-chapter/afsp-greater-phila- delphia-chapter/outreach-to-survivors-of-suicide-loss), it is important to be aware of support services for them, particularly those in this high-risk age group. Indeed, many claim that the stigma and self-blame of suicide often disenfranchise parental grief (Doka, 2002). Helping parents reclaim the right to memorialize and remember emerging adult children who have taken their own lives has shown promise for assisting parents to express and manage their grief (Maple, Edwards, Minichiello, & Plummer, 2013).

Parents’ and Others’ Responses to an Emerging Adult’s Death

Most emerging adults’ deaths are sudden. Rando (1993) made a persuasive case that those bereaved suddenly are at higher risk for complicated grief. In contrast, Jordan and McIntosh (2011) argue that survivors who learn to “dose” themselves can better manage their grief. Suicide-survivors must consciously move toward and away from grief to avoid the perseveration on the death narrative characteristic in sudden deaths. Yet, research comparing natural death loss to sudden, unnatural deaths continues to show that those bereaved after a sudden  death are at higher risk for complications of their grief pro- cess (de Groot, de Keijser, & Neeleman, 2006). This means that grievers after an emerging adult death are nearly always going to have more challenges in

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their grief as they grapple with the accident, homicide, or suicide. Jordan and McIntosh (2011) propose that survivors be taught how to manage their Dual Process by “dosing” their grief.

A common observation after the death of an emerging adult is that the person’s “life was just beginning.” In obituaries, one is struck by the way this theme jumps out whenever the decedent is a teen through young adult—essentially an emerging adult. This is not surprising: The develop- mental stage is one where life truly is beginning to take on the shape of adulthood with forays into work, love, and other life roles. When an emerg- ing adult dies, the parents and other loved ones are often left to grieve not only the person, but the potential adult life, the contours of which had just started to emerge.

TYPICAL AND MATURATIONAL LOSSES

Loss of Economic Viability

In the past, emerging adults were likely to move into economic self-sufficiency between 18 and 23 years old, depending on class origin and uni- versity attendance, and the maturational losses involved in giving up depen- dency on parents for economic survival were often experienced as a loss. Such loss still occurs, but today’s cohort of emerging adults faces it later, on the whole, because the transition has become far more difficult. As Davidson (2014) reported (www.nytimes.com/2014/06/22/magazine/its-official-the-boomerang-kids- wont-leave.html?_r=0), aside from needing to return to the family home to live after college due to poor employment prospects, emerging and young adults today can expect to earn significantly less than previous cohorts, and most grad- uate with significant debt (p. 25). According to Urban Institute data, while 20 to 28 year olds in 2007 had a mean head-of-household (HOH) net worth of $74,684, that same age group in 2010 had mean HOH net worth of $37,223 (p. 29). Lost here is an imagined and even expected future of success and security.

Lisa B. Kahn, an economist at Yale University, notes (Davidson, 2014, pp.  25–26) that starting at lower salaries along with higher educational debt virtually ensures that this cohort will not be able to make up the difference over their careers. This circumstance is attributable most immediately to the Great Recession, but more generally to the often chaotic economic restructur- ing driven by the globalization of markets and the declining bargaining power of labor. As “adolescence” was an artifact of economic modernization in the late 19th century, “emerging adulthood” as a recognizable life stage has roots in the rapidly changing modes of digital-age production that have transformed labor markets worldwide.

Emerging adults and their parents are aware of this, if only intuitively. They report a sense of economic pressure that leads to pessimism about the economy as well as anxiety and depressive symptoms for both groups (Stein et al., 2011). The parents tend to have anxiety and depression related to con- cerns about their children’s career possibilities and potential for sacrificing to assist parents, while emerging adults tend to have more anxiety and depres- sion about personal economic pressures (though they were not unaware of the

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possibility that they may need to sacrifice for parental well-being in the future) (Stein et al., 2011).

Certainly this loss of the sense that one can graduate from college and move forward into a decent job and self-sustaining life is significant and likely adds to the anxiety and malaise that characterizes the “quarter-life crisis.” Although there is growing awareness of the economic structures that work against emerging adults, particularly those without advanced education, this loss nevertheless remains largely disenfranchised by the widely accepted American myth of bountiful opportunity. As with many disenfranchised losses, the silence and sense of self-blame that accompanies it must be exposed to allow emerging adults to mourn their lost expectations, gain strength from one another, and avoid blaming themselves for circumstances beyond their control. They must also be helped to achieve productive work lives that enable a sense of purpose and satisfying independence.

Loss of a Love

The emerging adult, like the adolescent, is involved in exploring intimate relationships. Erikson (1980) defined the crisis of intimacy versus isolation as the major thrust of young adult development and asserted that those who resolve this crisis in favor of intimacy are able to experience love. More than one third of all types of partnerships (gay, lesbian, and heterosexual) dissolve within 2 years (Neimeyer, 1998). For some young people, the dissolution of a relationship contributes to their growth, but for many others “the years of dat- ing represent a seemingly endless series of exhilarating romantic connections, broken by disappointment and occasionally devastating disconnections” (Neimeyer, 1998, p. 23).

Some of the secondary losses from breakups are subtle, such as loss of the self-definition provided by being in a couple. The dissolution of a relation- ship shifts the view of self, in part because of how others react to the change. Particularly in a world where emerging adults are viewed as having transient dalliances and “hook-ups” rather than relationships (Katz & Schneider, 2013), mourning this type of loss is often unacceptable or is trivialized by family and friends with comments like “you are young and will find someone else.” Although the Katz & Schneider study does not claim to be generalizable to the U.S. population of emerging adults, its findings converge with literature reported in the study which indicates that a bit more than half of emerging adult men in their freshman year of university (64% in their study) and a bit less than half of women (44% in their study) engage in hook-ups outside of on- going relationships. Yet, for people in committed relationships, these relation- ship breakups can be painful and life altering (Martin, 2002).

Social media can make breakups painfully public and even shocking when people learn they are no longer part of a couple when the Facebook relationship status is unilaterally changed. At times, social media use actually provokes the breakup (Clayton, Nagurney, & Smith, 2013). Although current emerging adults still engage in person (Rappleyea, Taylor, & Fang, 2014), most view social media and the status of becoming “Facebook Official” as part of dating. This said, some emerging adults do not use such technologies, usually

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for economic reasons or because they were not socialized into their use or lacked the requisite access and leisure time (Bobkowski & Smith, 2013).

Regardless, relationship loss at this age is often a disenfranchised loss and breakups of romantic relationships are frequently followed by intense grief (Robak & Wietzman, 1994). When friends and family members react to the breakup as merely an expected part of growing up, the meaning of the loss is minimized (Robak & Wietzman, 1994). Recent findings link higher levels of trait anger with “a thwarted sense of belongingness” and a “sense of being burdensome” as risk factors for suicide (Hawkins et al., 2014, p. 60) and these factors may all come together more commonly after a romantic breakup.

Notably, the identity issues noted above involving moratorium or achieved identities in emerging adulthood (as well as diffuse or foreclosed identities as per Marcia, 1966) seem to interact with emerging adults’ roman- tic relationships (Johnson, Kent, & Yale, 2012). Women in any of the iden- tity categories other than moratorium reported higher relationship intimacy while male emerging adults with foreclosed or achieved identity tended to report higher levels of relationship intimacy—indicating that women still exploring identity were less likely to engage in high intimacy relationships while men who had committed to identity earlier were more likely to be competently intimate. For those who have established identity (via achieve- ment or foreclosure), romantic partnerships seem to be easier and to create a greater sense of well-being (Johnson et al., 2012).

Substance Use Disorders

Emerging adults are engaging in illicit substance use at ever-greater rates, with marijuana use likely driving the pace. Monthly rates of illicit drug use have risen among 18 to 25 year olds from 19.6% in 2008 to 21.2% in 2009 and they hit 21.5% in 2010 (Substance Abuse and Mental Health Services Administration, 2010). Neurobiology seems to make emerging adults more vulnerable to substance use disorders (SUDS) (Weiland et al., 2014) both due to their attraction to the use substances as well as the potential of substances to damage the developing brain. In a review of factors associ- ated with SUDS, stressful life events like the death of a parent or the end of a romantic relationship were shown to enhance the likelihood of SUDS (Stone, Becker, Huber, & Catalano, 2012). Social context is also associated with SUDS in complex ways as suggested by Zinberg’s classic treatise on “drug, set, and setting” (Zinberg, 1986). In any event, substance use and abuse tend to develop or intensify during the emerging adulthood stage that provides more freedom (and legal permission to use in the case of alco- hol), yet is not associated with the roles of spouse, parent, and worker that often mitigate SUDS.

When emerging adults develop SUDS, they often lose self-sufficiency. Additionally, they are typically exposed to a high degree of social stigma that disqualifies them from societally valued positions and may actually reinforce their problem (Room, 2005). Depending on the level of use, they may also lose their health and the delay of developmental tasks may have lifelong ill effects.

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As with the income that is never fully recovered when starting from behind, substance abusing emerging adults may be unable to fully commit to work, productive identities, and intimate partnerships until they are late enough in life that these are hard to form. As recovery itself takes significant time (some argue that it is a project unto death), even individuals who stop using may lose enough time that it is very difficult to reclaim the energy and flexibility of emerging adulthood and they may become unable to gain a foothold in con- ventional adult society.

In recovery, people with SUDS give up the substance use that helped them handle stress and often organized their social world. Many recognize the losses inherent in being an unreconstructed abuser, but moving into recov- ery involves many losses, often disenfranchised. An African saying holds that when someone is asked to give up something valuable, something of value must be returned. This exchange is at the heart of recovery.

A focus of 12-Step recovery efforts is to change the “people, places, and things” associated with use of substances. Mutual help organizations (MHO) such as Alcoholics Anonymous (AA) and Narcotics Anonymous (NA) grew out of voluntary organizations that aimed to aid members’ strivings for sobri- ety and offer the social capital of group membership to address companion- ship, livelihood, and housing needs (Baumohl, 1986, 2013). Yet, only about 13% of AA members (AA, 2011) and 16% of NA members (NA, 2009) are under age 30. A study of the impact of a treatment program designed to serve emerg- ing adults, found that focusing on decreasing high-risk friendships (substance using friends) and encouraging 12-Step program involvement helped emerg- ing adults move into recovery (Kelly, Stout, Greene, & Slaymaker, 2014). Even so, participation in 12-Step MHO’s seemed to support recovery through meet- ing attendance, not by facilitating new social network affiliations (Kelly et al., 2014), meaning that work to help emerging adults develop low-risk friend- ships may need to rely on other means. As most friendships are embedded in the routines of daily life, it would seem extremely important to promote the affiliative and restraining properties of employment (Baumohl, Speiglman, Swartz, & Stahl, 2003). This would have salutary influences well beyond addressing SUDS, of course.

INTERVENTIONS

As in all grief, to support emerging adult grievers requires the ability to form a supportive, authentic helping relationship to provide psychosocial education about grief and a venue where grievers may tell their stories. Adults are more able to engage in typical talk therapy, but emerging adults can still benefit from activities that assist them to articulate their grief. As Creighton et al. (2013) indicated, using pictures, songs, and other mementoes can allow grievers to speak in ways they might otherwise avoid. It is notable that the ATTEND approach to mindful grieving (Cacciatore & Flint, 2012, discussed in depth in Chapter 1) seems well suited to assist emerging adults or those who are grieving an emerging adult (particularly after traumatic death) as it enables the practitioner to be fully present and attuned to the griever even in extremis. KORU mindfulness training may be particularly

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useful in assisting bereaved emerging adults (friends and siblings) in their grief as it was developed for college students (Rogers, 2013). After finding that attrition was high for many formats of mindfulness training with col- lege students, Rogers and her coleader found that a four-session training and experiential class paired with a commitment from the student for ten minutes of daily meditative practice appealed to the emerging adults. It is likely that any intervention aimed at emerging adults’ grief needs to be time limited and clear in its goals and activities.

READINGS

Grief, Resilience, and Healing During Emerging Adulthood

Natalie Carlos Cruz

Dr. Natalie Carlos Cruz is a graduate of the California School of Professional Psychology at Alliant International University, Los Angeles, and currently an American Psychological Association postdoctoral psychology fellow in Project Heal at the University of Southern California Center for Excellence in Developmental Disabilities at Children’s Hospital of Los Angeles. Influenced by the death of her mother following a two-year battle with stomach cancer, Dr. Cruz is dedicated to compassionately sup- porting others who are grieving or have experienced a traumatic event in their lives.

“Dear Mom, It has been 2 months that dad called to tell me that you had passed

`away after 2  difficult years of battling cancer. Billions of thoughts, ques- tions, fears, and regrets run through my mind. I tried to do my best to care for you, to listen to you, to support you. I would have given my life for you. I know I was not perfect and I was  particularly short the last few days with midterms coming up and an interview for a work-study position that would have helped pay for school. I am sitting in my dorm room in the dark alone on a Friday night wishing I had you to drive home to. All of my friends try to cheer me up and tell me to go out and attend parties with them. They say that this is part of life and I just need to move on. But my mind just goes towards thinking about you, thinking about the many wonderful memories we had together, and even feeling that love that was so special between us. I am find- ing it so hard to accept that nothing is for sure in this world. My dreams of having my strength, my inspiration, my best friend, my mother at my gradu- ation, future wedding, and during the birth of my first child, I guess are all just an illusion now . . . I still need you.“ —Marissa, 20 years of age

Emerging Adulthood

The death of a loved one is inevitable, yet painful for anyone at any age. Often overlooked is the unique distress experienced by emerging adults, aged 18 to 25. Approximately 25% of college students have lost a significant

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family member or friend in the past year and 50% have suffered a loss in the past 2 years (Hardison, Neimeyer, & Lichstein, 2005). Neimeyer, Laurie, Mehta, Hardison, and Currier (2008) have described this widespread bereavement as a “silent epidemic” affecting emerging adults’ social, aca- demic, and overall development.

The developmental stage of emerging adulthood is a distinct period in the United States and other industrialized societies where there is an extended form of adolescence (Arnett, 2004). It is not like earlier adolescence in that there is more freedom from parental direction. On the other hand, it is also not like adulthood, because many have not made transitions into financial self-dependency, marriage, or parenthood that are typically associated with adulthood. It is estimated that in the United States about two thirds of emerg- ing adults will enter college after graduating high school, and among college graduates, one third will pursue a graduate education. Therefore, it is now more common for marriage, parenthood, completion of school, and full-time stable employment to be achieved during one’s late twenties. Higher educa- tion is now more necessary than ever in order to obtain gratifying and high- paying employment that can sufficiently support one individual, much less an entire family (Arnett, 2004). Emerging adults may become involved with different partners as they learn what qualities they find most attractive or dis- tasteful. They often obtain various service jobs that are unrelated to what they eventually expect to do as adults. While thriving on this unstructured freedom to explore, this continuous exploration may be an overwhelming experience filled with multiple gains and losses (Arnett, 2004).

Emerging adulthood is often a time of transition involving both exter- nal and internal changes. External adjustments may include living on one’s own for the first time, decisions regarding education and employment, and evolving friendships and romantic relationships. Internal changes may be found in maturity, cognition, and independence as the brain continues to develop. Each transition and change is inherently tied to loss. The com- pounded loss due to death may significantly impact an emerging adult’s development and exacerbate their experience of other losses and changes in their lives.

Grief Processes

Myriad emotional reactions can occur after the death of a loved one during emerging adulthood. Sadness is one of the most natural and common responses associated with loss. It can lower mood, decrease heart rate, and generally reduce one’s energy level, thus allowing for the reflection and introspection needed to mourn a loss. This “time-out” period has the func- tional role of allowing for a more accurate and detail-oriented processing of the loss, which promotes adaptation (Lewis, Haviland-Jones, & Barrett, 2008). Emerging adults may find it difficult to allow themselves this reflec- tion process, especially if needing to take on new responsibilities, such as handling financial obligations or needing to care for younger siblings. Loneliness can arise in emerging adults as they may feel as if neither their family nor friends can understand the extent of their experience.

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When a caregiver dies, especially when the relationship with him or her was discordant during adolescence, there is also a lost opportunity. Emerging adulthood is often a time to reconnect and build an amicable relationship after the tensions of adolescence. Guilt feelings may arise from holding strong anger, not having been able to do enough, and not having done something to prevent the death of their loved one. There may also be anxiety and fear for the safety of other loved ones and themselves. While some of these emotions may be expected by some emerging adults, the intensity and duration of the emo- tions is often not anticipated, resulting in even greater confusion surrounding the normality of their grief experience (Balk, Walker, & Baker, 2010).

Pleasant emotions can also be common responses to the death of a loved one. Relief may be observed when the death was foreseeable, either after a lengthy and exhausting illness, a high-risk lifestyle, or another form of an anticipated death. Conversely, guilt often arises when the emerging adult con- siders these and other positive emotions to be inappropriate and not a part of the mourning process (Worden, 2009). Through the attempt to avoid all posi- tive emotions and simultaneously defend against unpleasant emotions, there may be a resulting state of numbness and a tendency  to  detach  from others (National Child Traumatic Stress Network [NCTSN], 2007).

Upon first hearing of the death, disbelief is a common cognitive response. Preoccupation with thoughts, questions, memories, daydreams, and night- mares surrounding the deceased and his or her death may be recurrent. Altered perceptions and visual and/or auditory hallucinations may occur; an emerging adult may sense the deceased loved one, seeing their face or hear- ing their voice, resulting in an overall sensation of unreality (NCTSN, 2007). A state of cognitive confusion about the meaning of the loss may overwhelm the bereaved emerging adult, resulting in decreased concentration, distractibility, and forgetfulness that may impact one’s educational, employment, and social functions (Worden, 2009).

Behavioral symptoms may also be common, such as trouble sleeping (i.e., falling asleep, staying asleep, and/or early morning awakening), disturbed appetite (manifested as over- or under-eating resulting in weight gain or weight loss), irritability, over- and under-activity, as well as a lack of interest in usual activities involving work, love, and play. She or he may avoid reminders of the deceased (e.g., purposefully putting away all pictures of the deceased); in con- trast she or he may carry objects that belonged to the deceased (e.g., wearing clothes or a jewellery piece that remind him or her of the deceased). Emerging adults, who naturally engage in more risky behaviors may use unhealthy behav- iors such as using alcohol and drugs as a way to cope with their pain. Some may engage in suicidal gestures and attempts in an effort to join the deceased loved one. Compulsive/excessive behaviors, such as sexual promiscuity or gambling, may also be used as an escape from grief. Overall, emerging adults’ behavior may appear erratic and  unstable, differing from their usual conduct (Pomeroy & Garcia, 2009). On the other hand, some emerging adults may choose to honor their loved ones by running a race on their behalf or engaging in other volunteer work.

All of the changes in functioning above may also affect emerging adults’ ability to study and work to their full capacity. Emerging adults may find

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themselves experiencing significant disturbances within their employment or volunteer work. Academic performance may also decrease, resulting in lower grades, dropping out of school, and limiting career development (Seravaty- Seib & Taub, 2010). It is important to note that this disruption is a natural and expected response to adjusting to the death of a loved one. Behaviors and their intensity will fluctuate as the emerging adult continues to adjust to a life without their loved one (Stroebe, Schut, & Stroebe 2007).

The news of the death of a loved one may disrupt emerging adult’s usual healthy eating habits, exercise routines, and other self-care patterns. Therefore, physical reactions may also be observed, including a loss of energy, hollow- ness in the stomach, tightness in the chest and throat, oversensitivity to noise, shortness of breath, muscle weakness, dry mouth, increased or decreased physiological arousal (e.g., increased heart rate), and other psychosomatic complaints for which medical causes cannot be found (e.g., headaches). The immunological and endocrine changes may lead to a greater susceptibility to illnesses, from colds and fevers up to more complex diseases and even mortal- ity (Stroebe et al., 2007).

An emerging adult may socially withdraw from social supports and/or places that trigger memories of the deceased (Worden, 2009). Family, friends, and the culture at large may exacerbate this isolation by not allowing the emerg- ing adult to grieve fully. Well-intentioned supporters may insist that emerging adults mask their true emotions and move on with their lives, thereby, forcing emerging adults to limit where they are able to release their true inner feelings. This withdrawal may come at a critical time as emerging adults are devel- oping their ability to maintain committed relationships with others. Failure to develop intimate relationships can result in a weak sense of self, further decreasing opportunities to socially connect with others (Erikson, 1980).

Spirituality concerns the inner experience that connects one with one’s essential nature; this may or may not coincide with religious beliefs and prac- tices (Pomeroy & Garcia, 2009). The death of a loved one may transform spiri- tuality, known as metanoia. This may strengthen beliefs, as when emerging adults find comfort in a belief system that mitigates pain and provides under- standing, or it may disrupt one’s spirituality. An emerging adult may feel angry at and betrayed by God or a higher being. Existential questions regarding who God is, where their loved one has gone, and what the meaning of life is may arise. An overall reevaluation of priorities may take place in regard to the inner experience of self and external relationships with others (Worden, 2009).

Resilience & Healing

Following the death of a loved one, emerging adults may also experience resilience, defined as:

The ability of adults in otherwise normal circumstances who are exposed to an isolated and potentially highly disruptive event such as the death of a close relation or a violent or life-threatening situation to maintain relatively stable, healthy levels of psychological and physical

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functioning, as well as the capacity for generative experiences and positive emotions. (Bonanno, 2004, pp. 20–21)

Resilience after death is associated with: the intermittent experience of positive emotions during the grieving process; active coping and engagement with matters within their control; connecting with supportive social supports; making meaning through the process of finding an explanation for the death; benefit finding at various levels (e.g., spiritual, personal); and the reconstruc- tion of one’s identity (Neimeyer & Anderson, 2002).

Current research points toward humanity’s inner strength and capacity for resilience. We can help emerging adults cope with feelings of grief and enhance their inner strengths and progressive adaptation by using Worden’s Four Tasks of Grief while integrating and enhancing resilience factors. A  counselor’s self-awareness, establishment of a solid therapeutic alliance, and continued assessment of an emerging adult’s grief best facilitates an accurate conceptualization and corresponding intervention. Many emerging adults may not be aware of the extensive direct and indirect impact the death of a loved one can have across time. In a 2001 study of 433 emerging adults between the ages of 18 and 23, Balk et al. stated that, “Many students do not see themselves as needing help in dealing with their loss and are thus not likely to complain to physicians or counselors about grief but instead about insomnia, lack of motivation, inability to concentrate, and anxiety.” Therefore, a thorough assessment of an emerging adult’s experience of grief is essential.

A thorough understanding of grief and resilience is essential in order to avoid under-pathologizing and/or over-pathologizing an emerging adult’s expe- rience of primary losses and secondary losses, such as financial support, a family role, desired lifestyle, social changes, envisioned future, and even personal iden- tity. It is important to recognize when adjunctive support and referrals to com- munity resources can be beneficial. Finally, a counselor can model a wholesome goodbye and significantly enhance feelings of a healthy closure that allow for an emerging adult’s ability to continue moving forward on the path of life.

“Dear Mom, It’s the day of my graduation and I can see family and friends out in the

crowd, but wish I could see you out there too. I am wearing your ring; it some- how makes me feel like you are by my side. I feel connected to you whenever I listen to your favorite song late at night, open my wallet and see your picture inside, and eat at your favorite restaurant which by the way we are going to tonight. I also started participating in local 5Ks and run in your honor to raise money for children grief support groups and camps. Well, I just wanted to let you know that Dad and I still think about you and miss you tons, but we are doing okay. I love you mom.” —Marissa, 22 years of age

Emerging Adulthood: Hereditary Breast and Ovarian Cancer

Allison Werner-Lin and Lindsey M. Hoskins

Allison Werner-Lin, PhD, LCSW, is an assistant professor at the School of Social Policy and Practice at the University of Pennsylvania. Her research addresses the ethical and

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psychosocial implications of new genomic technologies for family life. She maintains a small private practice working with families at the end of life. Lindsey M. Hoskins, PhD, LCMFT, was a postdoctoral fellow in the Clinical Genetics Branch of the Division of Cancer Genetics and Epidemiology at the National Cancer Institute. She maintains a robust private practice in which she works with couples and families facing medical and genomic challenges.

Background

Deleterious mutations in the BRCA1 or BRCA2 genes increase a woman’s life- time risk of breast and ovarian cancer. By age 70, approximately 60% to 70% and 45% to 55% of BRCA1 and BRCA2 mutation carriers will develop breast cancer, respectively; 40% and 20% of BRCA1 and BRCA2 mutation carriers will develop ovarian cancer (Clark & Domchek, 2011). By age 30, however, these risks are 3.4% and 1.5% for breast cancer, and 1% to 2% for ovarian cancer (Chen & Parmigiani, 2007; Evans, Skrzynia, Susswein, & Harlan, 2005/2006). BRCA1/2 mutation testing may be offered once a woman reaches age 18 (Trepanier et al., 2004). However, independent decision making is often not well established by this time in life (Arnett, 2000). Targeted genetic therapies are not yet available. Further, for women under age 25, evidence-based approaches to risk manage- ment have not been developed, nor have clinical trials been undertaken (Pruthi, Gostout, & Lindor, 2010; Samuel & Ollila, 2005/2006). Surgical removal of breast and ovarian tissue remains the most effective method of risk reduction. These options may not be appropriate, and are rarely acceptable to women aged 18 to 24. Women aged 18 to 24 who pursue BRCA1/2 mutation testing may receive highly personal and emotionally charged cancer risk information before they are able to confidently deliberate about and manage this risk.

The Case of Emily

Emily is a 22-year-old of Ashkenazi Jewish descent who tested positive for a BRCA1 mutation at the age of 19. Her maternal aunt died of breast can- cer at the age of 22, before Emily’s birth, and Emily’s mother died of breast cancer at the age of 43, when Emily was just starting kindergarten at age 5. Emily’s father raised her with significant support from Emily’s much older half-sister, Susan, who was a product of her mother ’s first marriage. Emily lives with her father, reports that while she supports him financially, they are not very close. She maintains close relationships with her mother ’s only surviving sister, Jane, who was BRCA1 mutation-negative; and her maternal grandmother, Anna, who was never tested. She says of her early childhood, “that was the hardest point or part of my life (was) growing up with only a father. But my grandmother was like a mother figure for me.” When asked what she knew about her mother ’s illness, she says, “Just what my older sister told me. ‘Cause it’s such a young age, I think I kind of blocked it out.” With few memories of her own, Emily relies on her family for information. But, she says, “My father and I weren’t really talking about it. So I’d only hear from my grandmother and my sister and they really didn’t want to talk about it, because they thought I would get upset.”

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When Emily turned 18, Susan, who functioned as a surrogate mother to Emily during her childhood and adolescence, told Emily about the fam- ily’s BRCA1 mutation and urged Emily to get genetic testing. This conver- sation confirmed for Emily what she had known growing up: She was probably going to get cancer just like her mother. With additional pressure from her aunt Jane, Emily went begrudgingly to meet Jane’s genetic counselor. She recounts: “I really didn’t want to, but then again my sister pushed me, and my aunt, and then one of my cousins has ovarian cancer. Basically all three pushed me, even though I was young, they wanted me to be aware if I did have the gene [mutation].”

Emily conceded to genetic testing primarily because her aunt died of breast cancer in her early 20s, and her determined family “wanted to make sure I got checked early on.” Susan made an appointment for Emily to see the genetic counselor Jane had consulted. Emily remembered receiving her results: “I just basically was in shock, I didn’t have any questions or any . . . like, I was just like, oh my god!” She went on to say of the team of providers: “They were so con- cerned because of my age, of telling me something like this. They were like, ‘a lot of people get depressed after this, want to even kill themselves.’ I think they brought a psychologist in, a few doctors, just to make sure that I was okay with the news.”

Since receiving her genetic testing results, Emily says she is “constantly worried. Because you don’t know when something’s going to hit.” She strug- gles with conflicting recommendations from providers. She says, “It was really hard for them to even tell me what to do, because of the young age. They were like there’s [sic] not enough studies out.” As a result, she participates in research, when she finds access, hoping these studies might provide access to novel technologies.

Emily hopes to stave off surgery for as long as possible, saying: “A lot of people in my family want me to have surgery and I don’t know if I’m ready. If I have a kid, breastfeeding and stuff, you know? So that’s the hardest deci- sion.” Although Emily believes her family means well, she is in a unique position, because, “no one had (genetic testing) at my age. A lot of people in my family are older. They’re all married. It’s different.” She is relieved that, for the moment, her doctors recommend against surgery because of her age. Regarding risk-reducing bilateral mastectomy, she said “I think I’ll feel less stressed, but I really don’t want one until I’m married and settled.” In the meantime, she receives clinical breast exams every 3 months, mammogram and breast MRI once each year separated by 6  months, and CA-125 serum marker every year. She still feels unprotected and wants to “learn more and more about what I should be doing prevention wise.” She struggled with poor insurance coverage and could not afford primary breast screening. She was relieved to join a resource-rich breast imaging study to receive these screening tests free of charge. She is the youngest participant enrolled in the study.

Frequent visits to the high-risk clinic, regular conversations with family about risk reduction, and her own research into BRCA1 mutations lead Emily to question her identity, especially when friends and romantic partners react poorly to her disclosure. She wonders, “just because I have it, am I different? I don’t want them to think differently of me.” Emily is in a bind as far as social

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support; while her sister and aunt “would understand it better, because they went through stuff like this,” their counsel is far from impartial. Her friends, she reports, are “too immature to understand.”

At the time she completed genetic testing, Emily was dating casually. She said of that partner, “I don’t think he understood. That’s I think the biggest thing, like you don’t want to explain this whole history and then scare people away.” She worries about disclosing her mutation status to romantic partners, and she is frustrated thinking about how best to disclose. She states, “When the time comes, I’ll just have to do it, I’ll have no choice.” She feels pressure to identify a life partner quickly to marry and begin childbearing.

Emily hesitates when considering how to communicate cancer risk infor- mation to future children. She anticipates her children might ask about the absence of their maternal grandmother (Emily’s mother) “as early as five or six” years old. She intends to “make sure they know at an early age” about her mother’s life and about the risks associated with a BRCA1 mutation. Yet, she wants to approach her children differently than her family approached her. Although she first identifies age 12 or 13 for initial conversations with her children about BRCA, she says: “I don’t want to scare them. I want them to be informed and able to talk to me about it.”

Case Analysis

Emily’s story demonstrates the unique developmental, relational, and tem- poral influences, as well as the challenges, experienced by 18- to 25-year-old BRCA mutation-positive women as they complete genetic testing and initiate cancer risk management during this critical developmental period. Emily’s family of origin provided the relational context for pursuing genetic testing. As a result, the same individuals who shaped the instrumental and emotional resources available for managing cancer risk were those most closely tied to family legacies of illness and loss (Werner-Lin & Gardner, 2009). For Emily’s surviving relatives she becomes a vessel for their grief and fears. Family pres- sure is especially potent when perceived risk is high, tolerance for ambiguity is low (Hoskins, 2010), and young women remain financially and emotionally tied to families of origin. As long as the emerging adult remains pragmatically and emotionally dependent on parents for resources, her ability to act inde- pendently may be constrained.

Developmental Concerns

Kenen, Ardern-Jones, & Eeles, (2006) defined “social separation” experi- enced by BRCA mutation-positive women under age 40 as “relational disso- nance,” in which mutation-positive women feel new or increased isolation and estrangement in previously healthy relationships, a change marked by disrup- tion in patterns of communication and interaction. For women aged 18 to 25, this estrangement occurs at a moment of developmentally normative sepa- ration from families of origin (Werner-Lin, Hoskins, Doyle, & Greene, 2012). As described above, this moment of individuation, theoretically normative in emerging adulthood, is compromised by intense family relationships and

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legacies of loss. She is highly responsive to pressure exerted by her surviving relatives. This responsiveness is intensified by loyalty to Susan and Jane born out of early parental loss and their role as surrogate parents. Yet, she refuses to share her doubts and fears with either Susan or Jane. She is relieved her physi- cian recommended she postpone risk-reducing surgery despite her family’s insistence otherwise.

Emily’s awareness of life-threatening illness risk was out of sync with the experiences of her peers who are more likely to be pursuing developmentally normative tasks such as exploratory partnering, developing educational or job prospects, and building an identity through experimentation. As a result, Emily reports feeling different from peers and other mutation-positive fam- ily members, a feeling intensified by (a) her peers’ lack of understanding or capacity for mature and measured responsiveness, (b) her knowledge that she was the youngest participant in the breast imaging study, and (c) the mys- tique around her family’s experiences with cancer and her mother’s death. Her sense of isolation leads her to worry about whether she will be accepted by a future partner after surgery. As a result, she hopes to stave off surgery until she is “married and settled.”

Practice Recommendations

Experiences such as Emily’s highlight the need for emotional support beyond genetic counseling (Werner-Lin, 2008) to manage surveillance fatigue (Hoskins, 2012) or assist with decision making about surgical risk reduction. Access to competent and compassionate genetic and mental health providers is essen- tial. Emily’s case also speaks to the need for improved family communication between 18- and 25-year-old mutation-positive women and their families of ori- gin. Emily understands that her family’s commitment to surgical risk reduction is connected to grief over the untimely death of her mother. This grief compli- cated communication among all parties (Sobel & Cowan, 2003). A basic assess- ment of family dynamics around cancer and loss would illuminate the coercive pressures on Emily to pursue genetic testing and surgical risk reduction. Emily might benefit from an examination of how her family’s medical history, as well as her family’s relationships and prolonged grief (Daly, Farmer, & Harrop-Stein, 1999) impact her ability to autonomously consider genetic testing and navigate risk management. Such resources, or a forum to approach her family, might empower her to make an autonomous, informed decision about genetic testing, whether or not her decisions are consonant with her family’s interests.

Inheriting an Unfortunate Legacy: Growing Up Fatherless by Suicide

Chris Michael

Chris Michael founded Collaborations for Change after over a decade of developing and leading human rights advocacy campaign and multimedia strategy trainings for human rights groups from over 115 countries. In 2014, he took a brief sabbatical to launch Fatherless by Suicide, a collaborative storytelling project by and for men who lost their fathers to suicide. The portfolio of interviews, portraits, and the audio

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documentary aims to reduce the shame and stigma around suicide, and improve our ability to better support the millions who live in the wake of it. www.Fatherlessby Suicide.com.

Every 15 minutes someone dies by suicide, and every 16 minutes someone is asking “why?” Unfortunately, my turn came when I was three years old when my father died by his own hand in Kansas on the morning of September 9, 1981. I did not have the words to ask at that age, but the feeling of losing my father has stayed with me. I am working to recall those feelings and honor them more now. Ultimately, I am still asking “why,” but getting more comfort- able with the fact I will not ever really know the answer.

Throughout my life, I have been growing into my father’s name, genet- ics, and mannerisms, as well as an unending, unanswered series of questions about who he was and how much of him—and his illness—I have in me. As the saying goes, “like father, like son.” I was afraid that his life narrative would inevitably be mine, especially when I was a teenager with synapses and emo- tions that I had a hard time navigating.

When I was asked by the authors of this book to reflect on my own path of growing up and into my own manhood in the absence of my father, my mind and emotions darted back to being on the playground of my Catholic grammar school and getting in a fight after another child told me my father was burning in Hell because he killed himself. That moment taught me that I needed to watch what I told people about my father, especially about how he died. Looking back, I realize that this incident, and similar encounters where I faced direct shaming or stigma associated to his death, illuminated to me how judgment and vitriol could come at whiplash pace. My mom would console me and reinforce it was not my fault. Yet, it felt like a choice between stand- ing up for my father (and my mom and me) or avoiding the topic or skirting around it. I often avoided it altogether. The behavior I developed in those early years stayed strong in me until just a few years ago, when I turned older than my father and began wanting—needing—to process his death.

Suicide, and the shame and stigma that surrounds it, has been a factor of human existence since we have been recording it. Though we have a lot of opportunity for growth in our society about how we discuss suicide and sup- port those who live in the wake of it, we are light-years ahead from when my father died. Despite these advances, suicide remains prevalent and it is the tenth leading cause of death in the United States. Four out of five people in the United States will lose a loved one to suicide, and odds are that they will lose a man in their life, with men accounting for upwards of 75% of deaths docu- mented as suicide, which experts believe is not the full story.

Though my father’s death does not define him or me, it has affected my life’s trajectory in countless ways. Despite being unconditionally loved by a dynamic, powerful mom, and supportive community, I grew up ashamed of being the son of a man who took his own life. I often felt guilty, thinking that my “terrible twos” and I were somehow to blame. Mostly, I was angry with him for taking his life and leaving me fatherless with an avalanche of ques- tions and sadness.

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To get a better sense of what happened, let’s roll back the clocks to the late 1960s. My parents were high-school sweethearts in Kansas and their love for one another helped them overcome significant class difference and geo- graphic distance. After high school, they went to different colleges in the state, but by the end of her first year, my mom left her college to become a nurse and support my father while he slowly finished-up his undergraduate degree and law school. They had a nice life mapped-out in their heads: He would get the best education possible and she would support them financially until he landed a prominent, well-paying job that would enable her to focus on raising the large family she wished for. Unfortunately, things did not work out as she had hoped.

Their story of love is what brought me into the world, but the story of my father ’s downfall and ultimate suicide has cast a heavy shadow. It is just now, some 33 years later, that I am working to explore my own feelings of father-loss and trying to learn how my father ’s suicide impacts how I choose to live and enhance the life I have been afforded. It is a nontrivial endeavor, but it is one that I wish I had the fortitude to embrace earlier in my life.

I was raised in a Kansan college town by a loving and unconditionally supportive mom. By all accounts, I had a great childhood and was provided a breadth of opportunities to better myself and explore my interests. Over the years, I have been able to more fully recognize the privilege I was born into and appreciate the opportunities I have been afforded. Though my dad died by suicide, I am not a victim and never thought of myself as one. However, that does not mean his death did not throw my life drastically out of whack.

Because my father died before I was verbal, I have come to realize that I cannot really put words—or adequate words—to my emotions and feelings about his death. This has become increasingly obvious to me after I met my therapist, who just asked me how my body felt as I talked about my father and his death. I was stunned by the question. No one had asked me that, and I had spent the better part of three decades avoiding “feeling.” Instead, I had honed my own quick story about my father and his death for folks who inquired. I had finite language for it and had practiced it over the years, so much so that when I would talk of my father’s death I would almost put on a show or a façade. I used language and my storytelling skills to tell the story, not feel how my loss affected me. Language and storytelling became a buffer for me in helping me avoid feeling how I felt. I am still working on actually feeling how I feel when I think of my father and the lack of having him in my life. I  have inadequate language to express it, and I have come to think that is a good thing. Maybe some feelings are not meant for description.

Anyhow, after my father died, his family blamed my mother, shamed her at his funeral, disowned her from their family, and sued her for all she was worth—as well as for custody of me. Months after his death, my mom was alone with virtually no family support and in debt to the tune of $375,000 in today’s dollars. She was advised not to declare bankruptcy, but rather pull herself up by her bootstraps and work harder to make a life for us. She did that and then some. She worked three jobs and did all she could to give me the opportunities she did not have. She’s a Saint and her success story and resil- ience is a testament to the power of the human spirit.

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Eventually she met a man, married him, and he became my stepfather. He tried with both of us, but by junior high, they were going through divorce proceedings. As their relationship fell apart, so did ours. I have not talked with him in nearly 20 years. However, he played a significant role in my under- standing of who I was as a young man and how I would develop my own manhood in the absence of my biological father. I can see some of his man- nerisms in me, which continue to surprise me, and I can appreciate how he supported a host of endeavors in my young life—from sports to flea market haggling. However, I do not recall ever speaking with him about my father or his death. It seemed like a “no-go” topic in the house and his name, life, and death rarely came up amongst the three of us. Discussions about my biological father were confined to private drives with my mom over the years.

I began to create a patchwork of male behaviors and characteristics that I appreciated and wanted to emulate from the men in my life—both those who I knew and those who I idolized from afar. I came to realize that I had been doing this all my life, but it became more intentional during my young ado- lescence. For example, I admired how my coach spoke supportively to us and was always there, on time and with a loving smile; Magic Johnson’s sports- manship and ability to pass with style; how a friend’s father would kiss his wife and tell her she looked pretty before dinner; how a teacher could be both brilliant and funny while talking passionately about physics; and how movie actors could be sexy, tender, and tough at the same time.

My adolescence was a time of searching for similarity and affirmation. I—my mind, body, and actions—were “manly” and the kind of “manly” that I wanted to emulate. In the absence of having a father, I learned early on that no man would embody all of the characteristics that I thought comprised the ideal man, but together—these hundreds of small and large behaviors and approaches to life would create the quilt of manhood that I could strive for. I still do this today, but my stitching together of the man I wanted to be was most active when I was going through puberty and was trying to navigate the chemical cocktails that were adjusting my body, mind, and synapses.

Not having your biological father to serve as a loose mirror when your body changes so rapidly was a tough, memorable period for me. I wondered about everything from when I would grow facial hair (and how I would shave it) to if I would have hair on my hands like other men and what would my penis look like. The manhood patchwork worked well to help me develop my approach to life, but it did nothing to help me understand my body or how to grow into it.

As my body and mind changed so fast, new questions emerged and they were ones that I did not want to ask my mom or other trusted people in my life about. They were ones I felt were for my father and because I did not have one, I kept them internal. At this point in my life, I knew very little about my father, and what I had learned was through family and friends. They tended to paint a rosy picture, I assume because they did not want to hurt me or speak ill of the dead. The common themes I knew of my father was that he had a razor-sharp intellect, was a great athlete, and was good looking.

To help fill in the gaps, I began reaching out to other family members and people who knew my father growing up and in college. When I met them, they

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would say nice things and comment on how we looked alike, but would never share stories or thoughts about him. Never shared what made him him. It was a failed endeavor and one that illuminated how in my patchwork of manhood, my father was not in it. If anything, I was afraid that the genes he passed on to me would eventually destroy me.

This period was really hard for me. During this time, I started worrying that I would be like him and have a mental health breakdown and take my own life. Though I knew I would never do that, I doubted my father spent English class paranoid he was going to take his life a decade later. Ultimately, this was the period in which it really hit me that my father not only killed him- self, but he chose death over life. He chose nothingness over me. I remember the deep currents of sadness, which now I can see were around my feelings of loss and of being abandoned. I did not feel worthy or valid in his eyes, even with my mom’s exceptional love and support. That began to take its toll on me. It is something I still work through and probably always will.

As time marched on, my body changed and innocent playground flirtations expanded into my first series of romances, and not-so-innocent playground tussles became arenas for holding one’s ground and “being a man.” These were times when my mother, though exceptional, could not help like a father could and should. I craved a solid man in my life who had lived and walked the same high and low roads of life. One who had wisdom and experience and was a constant force in my life—there with me, in my corner, supporting me along my own journey.

Sadly, that was not the case, nor would it ever be. That is the harsh truth all of us come to soak-in when we lose a parent, let alone a parent to suicide: Though part of them created us and enabled our physical life, they are not there for us and they will not be there. Sometimes it would hit me often and with sharp, painful blows. Sometimes I would go months without thinking of my father or craving the unattainable.

As I reflect now, typing on the anniversary of his death, there have been two main chapters of my life after my father died: avoiding and embracing. The first part has been the bulk of my life when I worked hard to avoid the topic of my father’s death and any pain and suffering associated with it. If it came up, I did the verbal aikido to divert questions and conversation away from my father, the little I knew of him, and certainly, about how I felt about his death. The driving force for this was a mix of the shame and embarrass- ment around having a father who could not deal with life. I pictured him as someone who I felt was weak and surely not someone I wanted to identify with or talk about.

Part of it was also developed after years of having to hold another per- son’s emotions when they would ask about my father and I would eventu- ally—often after prodding—tell them. Upon hearing of his suicide, they would have the compulsory, “I’m sorry” and usually have a shocked, deer- in-the-headlights look on their face. Worse, they would probe with questions of “how did he do it?” and “did he die right away?” With hindsight, I realize how I turned to facilitating and managing conversations, taking the lead to ensure we would not visit topics I was not comfortable with. Other tactics I  found helpful were developing my ability to tell engaging stories, particu- larly after the topic of my father’s death would come up. I would use this skill

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to breathe life into the room and try to help people see me as the charming, smart guy they knew before, not the damaged guy whose dad killed himself. I  am just  now recognizing these behaviors over the years. I could probably write a manual on creative tactics of avoidance at this point.

But that chapter came to an end. Partly, it was out of exhaustion—I real- ized it was hard to maintain a positive persona and to avoid “real” talk in adult relationships. Additionally, I was struck with a thunderbolt of emotions when I realized I had lived longer than my father had. I knew that I would have emo- tional roller-coaster rides at a few key benchmarks in my life, if I were lucky enough to reach them: mainly when I got engaged, married, had a child of my own, and when that child turned 3 years old. I was not prepared for being struck when I turned older than he lived. There was something akin to cross- ing a finish line or going into a new frontier, one where his shadow would not cast a dark spot on me or my journey ahead, but was truly part of my past as I forged my own path.

If I could revisit my younger self and share some advice as I was navigat- ing my adolescence, I would encourage myself to do things differently. I would tell myself that you are not your father and his destiny will not be your own. I would also encourage myself to separate the man from the act, appreciate the man who gave me life and mourn the man who took his own. I would tell myself to keep listening to my mom and loving her and to better appreciate all she did to give me life, keep me alive, and nourish me throughout the years, despite her own tragic, devastating loss. I would also tell myself to work harder to soak in what she told me—even at 3—that my father’s death was not my fault and that he loved me. Though I will never have the full answers or story, I would tell myself that I should focus on developing my own story and path to manhood and happiness. Lastly, if I am ever feeling sad or overwhelmed—then or now—I need to pause and appreciate that I exist, I’m alive and I am feeling emotions and these are glorious gifts that I should never take for granted.

When we are developing at such a rapid pace during our adolescence, our minds and bodies are forming, and so is our understanding of who we are, the world we are part of, and our place in it. So much of my understanding of myself in my teens was about the story of my father and how I embraced the truth—that he took his life. Though consistently difficult, I am much better off for harnessing the truth of my experience and delving into my emotions and how it affects me and how it affected others I care about, mainly my mom. When I was a teen, I was contesting with all of the things we all deal with— changing bodies, minds, and social mores—but I had a foundation of honesty about my own experience and a deep-rooted sense of self-worth and tender- ness. I learned to extend that empathy to not just others, but to myself.

SUMMARY

Definition and understanding of the emerging adult stage of life is still evolv- ing, yet it has resonated as economic circumstances have forced many emerging adults to avoid committing to work, family, and other goals during the twenties

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as was previously common and customary. This continued semi-dependence on family of origin means that maturational losses related to moving into independence are postponed and yet the emerging adult has legal and other responsibilities of adulthood. This betwixt and between life stage can mean that emerging adults may mourn their dependence as well as their indepen- dence. Their strong sense of a “Just World” or a belief that one can control the events in one’s life may interfere with processing illness or grief until those illusions have been addressed. Meanwhile, when emerging adults die, the nascent achievements and flourishing hopes and dreams for their adulthood die with them. Work with this age group seems to mirror typical approaches to adults (talk therapy) but is enhanced by adding some of the activities and props (pictures) that help with teens and other younger populations.

DISCUSSION QUESTIONS

1. How does the economic environment both positively and negatively impact the stage of emerging adulthood?

2. Why might emerging adults have greater susceptibility to the problems of cumulative losses?

3. What are the pros and cons of moving through emerging adulthood more rapidly and establishing work, financial independence, intimate partner, and family, before the age of 25?

171

SEVEN

Young Adulthood

Henry was 33 years old when his boss called him into the office and told him that he would be losing his job of 8 years. The economic downturn and firm’s lack of finan- cial resources meant he would need to “pack up his office” and leave immediately. The firm was concerned that he might take clients with him because he was very talented at attracting new clients and selling them a variety of financial packages. Henry was shocked and devastated upon hearing this news. He had worked hard on his professional development and believed he had “financial security” for himself, his wife, and his two young children. That evening Henry went home in a very depressed mood. Fortunately, his wife of 9 years was compassionate and offered to return to work despite the fact that they had wanted Rose to be a “stay at home” mom for the early years of their children’s life.

Henry began searching the Internet for other positions in his field but every invitation to apply turned into a dead end. Henry became discouraged and quite depressed. He did get calls for some interviews, and even second interviews, but the jobs never came through. Rose wanted Henry to go to a therapist but he was very resistant. As the months wore on, Henry became despondent and finally agreed to take any job that he could find. He found a part-time job working for an insurance company 10 hours per week. He became a househusband and found that he enjoyed cleaning the house, making the meals, and working out for long periods of time. He also enjoyed spending more time with his daughter.

Rose found a full-time job at a hospital within 6 months, but her salary was much lower than what Henry’s had been. Henry grew so despondent that Rose urged him again to contact a therapist. Henry did, and found that he enjoyed talking with someone who could help guide him through this process.

After a year of job-hunting, Henry and his wife began having marital problems and his wife wanted a separation. Due to their financial difficulties, Henry moved into another bedroom within their small house in preparation. His youngest daugh- ter experienced severe anxiety during this time. Henry and his wife entered marital counseling, hoping they could make things work for the good of their young children and themselves. After a year of counseling, Rose decided to stay in the marriage and Henry made some radical changes to his dominating, controlling behavior. Their daughter’s anxiety problems diminished.

Henry, with his wife’s support, went back to school to receive a master’s in accounting. Although the couple had to use savings to pay for school, they both agreed this was the best path. After getting his degree and more job searching, he found an interesting job as an accountant. Life finally returned to a normal state for Henry and his family.

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OBJECTIVES

After reading this chapter the reader will be able to:

■ Understand the variety of losses that may occur in young adulthood and how they differ from adults in other life phases.

■ Describe how the developmental tasks of young adulthood influence how a young adult might cope with grief and loss.

■ Define how theories of loss/grief/bereavement influence practice with young adults.

DEVELOPMENTAL CRISIS: INTIMACY VERSUS ISOLATION

Biological Development

It is difficult to draw a line between the biological and neurological develop- ments of emerging adulthood (EA) and those of young adulthood. As emerg- ing adults move into young adulthood (approximately age 25), it seems the cortical pruning and thinning of adolescence and EA leads to a subsequent calming of the creativity and “divergent thinking” characteristic of adoles- cence (Cousijn, Koolschijn, Zanolie, Kleibeuker, & Crone, 2014). We often think of young adulthood as a time of stable health with few overt changes; young adults are often at the pinnacle of their health. One interesting suggestion from a Swedish study is that the way one lives in young adulthood will have greater impact on future health than many assumed. While many understand the con- cept that physical activity over the lifespan influences health, Gustafsson et al. (2014) found that the socioeconomic characteristics of the neighborhood one lives in during young adulthood (ages 16–43 for their study) played a role in allostatic load (a variable defined by health risk criteria). Poorer neighbor- hoods in young adulthood meant poorer health in later adulthood, especially for men. Therefore, young adulthood is not only a time of generally good health, but also a foundation for future health as well.

Psychological Development

The development of intimate relationships is an important task for young adults. Intimacy reflects the capacity to experience an open, supportive relationship without the fear of losing one’s own identity in the process (Newman & Newman, 2006). Intimacy implies the capacity for mutual empa- thy and mutual regulation of needs—the capacity to give and receive plea- sure. An intimate relationship encourages the disclosure of personal feelings and the sharing of plans and ideas. Intimacy allows two young people to feel meaningful and special to one another. In order to move toward the estab- lishment of an intimate relationship, an adult’s need for personal gratification has to be subordinated (at times) to his or her needs for mutual satisfaction. Young adults try out relationships and connect in new ways that allow them to experiment with levels of togetherness and differentiation.

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Another developmental task of young adulthood is finding one’s place in an adult world. As Arnett (2004) argues persuasively, young adulthood is not a chronological age so much as the time when one completes the tasks of EA. That means that the explorations of identity have given way to a consistent identity, work and housing have stabilized, and the young adult has become more able to focus on others, feel secure in his or her independence, and is able to look for- ward toward future goal attainment (Arnett, 2007). Adults in their mid-20s to late 30s tend to be goal oriented and future oriented—their sense of time is projected forward with an attitude that everything is possible (Oktay & Walter, 1991).

Social Development

Adulthood is being redefined as emerging adults are extending the time it takes to leave the parental home, marry, and choose a career. For this reason, we suggest that the ages of young adulthood now span from the mid-20s to the early 40s in keeping with Arnett’s (2007) description of the movement from EA to young adulthood.

Social expectations of parenthood are often part of young adulthood. The average age of first-time motherhood increased from 21.4 to 25.0 years (3.6  years) between 1970 to 2006 (Matthews & Hamilton, 2009). The higher proportion of women having their first birth at age 35 and over is the most sig- nificant factor contributing to this change. More adults remain unmarried but cohabitating and they may delay having children. Due to the growing number of adults who remain unmarried but living together in committed heterosex- ual, gay, lesbian, and transgendered relationships; marriage and child-bearing are no longer the primary markers in the transition to young adulthood.

LOSSES EXPERIENCED BY THE YOUNG ADULT

Death Losses

The death of a parent is off-time in young adulthood and challenging due to a lack of peers with whom to share and gain support. Loss of a spouse or part- ner in early adulthood is even more challenging. Most deaths experienced by young adults are off-time and unexpected.

Death of a Parent

The death of a parent can be quite traumatic for a young adult as she or he does not expect a parent to die during this life phase. Young adulthood is often the first time an individual consciously experiences the death of a loved one and when a parent dies, young adults often do not have a cohort with whom to share feelings and reactions. The lack of social support can lead to compli- cated mourning for the young adult. Young adults who lose a parent may be reluctant to work on the developmental task of intimacy with a partner due to fear of losing that loved one. A young adult may also become more of a pseudo adult in order to cope with the loss of a parent from whom the young adult is still separating. In some cases, the young adult takes over some of the roles that the deceased parent held in the family. For a young adult, this reaction can

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be an impediment to further development, or can enhance emotional growth and move the young adult forward in his or her life. It is clear that the colli- sion of parental death and developmental tasks can be disruptive to ongoing developmental growth.

If the young adult is in a marriage, it may suffer as the individual mourns the parent; conversely the bereaved individual may be able, in time, to make meaning of the loss and embrace the concept of marriage and/or parenthood as a step toward growth into the next generation. Because marker transitions (choosing a career, marriage, and parenthood) are now delayed, identity restructuring often continues into the 30s and can easily be disrupted by any death or traumatic loss, such as loss of a parent. Losing a parent in young adulthood has significant implications for identity development. The position the young person held within the family and the quality of the relationship with the surviving parent are both affected.

Bagnoli (2003) suggests that following the death of a parent, identity development is much more challenging because the parent can no longer vali- date the young adult’s quest for identity. Narratives from young adults who have lost a parent reveal that most are determined “to carry on with life as usual, regardless of the pain felt” (Bagnoli, 2003, p. 206). These young adults need to demonstrate that they can make it on their own. The bereaved young adult often denies the loss and becomes overactive. Bagnoli (2003) suggests that the critical loss of the parent requires an internal reconstruction of the deceased (“imagining the lost other”) in order to define one’s self. Although loss can offer the possibility of reconstructing an identity, the narratives in Bagnoli’s (2003) study point out how difficult and painful this can be.

A parent death can impair the young adult’s negotiation around psycho- logically leaving the “nest” as the family configuration changes dramatically. If a parent should die during this early phase of adulthood, the other parent is often emotionally unavailable during the intense period of grieving for their spouse. The young adult is left to grieve on her or his own, but can hopefully engage in peer relationships for support during this period. The young adult may also have relationships within the workplace that may offer some solace. Oktay (2005) describes a young woman who had just been married and had to return from her honeymoon to care for her ill mother. This young adult struggled to become independent from her mother and establish a new mar- riage while helping her mother at the end of her life. Oktay (2005) concluded that many young women wanted to provide care for their mothers, yet they also struggled with role conflict as they tried to balance their mother’s needs with those of their growing families. Their grief was deep and they benefited from rituals and therapeutic support after their mothers’ deaths.

Death of a Life Partner

This section will address the loss of life partner (including a spouse) more generally and then during young adulthood specifically. Holmes and Rahe (1967) claim that the death of a spouse is the most stressful of all life events. Individuals experience emotional, physical, and mental pain after a spouse/ life partner dies. The loss is intensified because the bereaved mourns the partner who died, and also the connection of the relationship, the hopes they

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had for the relationship in the future, and they also grieve for that part of themselves that was a part of the relationship (Walter, 2003).

The dual process model (Stroebe & Schut, 2010) explains how the bereaved spouse oscillates between engaging in and exploring all of the feel- ings associated with death of the partner, while at other times “tuning out” the feelings of acute grief in order to focus on the many external adjustments required by the loss. Adaptation to the loss depends upon the bereaved’s abil- ity to find some means of integrating the death of the loved one and develop- ing a continuing form of the relationship (Walter, 2003). Common themes in spousal loss include loneliness and isolation, an identity shift from “we to I,” changing relationships, handling rituals and marker events, taking responsi- bility for oneself, and coping with anger (Walter, 2003).

DEATH Of A SPOUSE OR LIfE PARTNER IN YOUNG ADULTHOOD. The loss of a life partner (married or not) in young adulthood is out of sync with one’s devel- opmental phase. Particularly as people marry later (if at all), widowhood in young adulthood is out of the ordinary and has little recent scholarly interest. Shaffer (1993) identifies the challenges of loss of a life partner in young adult- hood as: (a) peers’ discomfort with the loss, (b) the lack of previous experience with the loss of a loved one and, (c) a dearth of role models to demonstrate how to cope with such a significant loss. Unlike older adults, young adults are not usually exposed to and socialized about spousal death. Although clearly grieving, the grief of Shaffer’s sample of young widows was characterized by “positive shifts in life perspective and by a theme of metamorphosis and rebirth” (Shaffer, 1993, p. 128). We assume these findings extend to gay and lesbian partners who lose life partners in young adulthood as well.

Because this loss is experienced at a younger age when identity is more fluid, younger bereaved partners tend to remake their lives and “start over” in ways that might seem unrealistic to an older widow or widower in middle or later adulthood. One young widow from Walter’s research changed her career plans from animal research to grief counseling after her 28-year-old husband’s death and asserted: “I am a much healthier person and have much more insight into who I am . . . with more goals and deeper insight into the purpose of my life” (Walter, 2003, p. 49). Her ability to grow from her loss is clear.

There is scant literature on spousal death in young adulthood. Young and Caplan (2010) were some of the few who studied young adults whose spouses died and did so by reviewing the Internet dating profiles of widows and widowers. They found that although the loss is presented as tragic and traumatic, the experience often shaped the identity of the surviving spouse in a positive and healthy way. These young adults constructed “a forward-looking self-narrative that reaffirms the surviving spouse’s connection to and love for the deceased” (Young & Caplan, 2010, p. 601). This allows the bereaved to reassure her- or himself that the search for future relationships does not deny their love for their deceased spouse. Continuing bonds provide solace; “I was in love. I lost that person and cannot get them back. I am not looking to replace that person as he or she is irreplaceable. But I am ready to move forward and love again” (p. 596). Young and Caplan observed that the postings they reviewed described a need for a continued bond with their deceased spouse

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and a simultaneous readiness to move forward, illustrative of the dual process model (Stroebe & Schut, 1999, 2010)

In a study examining young adults’ reactions to personal losses/deaths, Stein et al. (2009) found that bereaved young adults who described their loss as “discouraging their strivings” experienced higher levels of depression. Their findings suggest that meaning-making strategies that protect plan- ning and future goals are related to less distress among young adult grievers. Similarly, in another study of 500 young adults who suffered the death of a loved one (including spousal loss), researchers found that “survivors who are able to make sense of the loss in personally meaningful terms experience fewer symptoms of complicated grief” (Neimeyer, Baldwin, & Gillies, 2006, p. 735). Consistently, higher levels of meaning-making (especially benefit finding) and positive identity change are associated with lower levels of complicated grief. For these bereaved young adults (some widowed), strong continuing bonds with their loved one were predictive of less distress (Neimeyer et al., 2006). Although neither of these studies examined only death loss, with so little research on young bereaved spouses, the results may be extrapolated.

Technology is changing bereavement experiences. Young and Caplan’s (2010) study was done through an online dating service, demonstrating that widowed men and women are using the Internet as a way to connect and form attachments with other young adults. The Internet provides: (a) anonymity so that the bereaved can control how much information about him or herself that he or she is willing to share with others, (b) an absence of traditional gate- keeping processes which prevents interference from family and friends, (c) a higher degree of control over relationships, (d) finding others online who have had similar experiences so that the bereaved can be validated in his or her experience with bereavement and recovery from loss (Gilbert & Horsley, 2011). These technological connections allow people to connect across geographical and demographic differences with others who may be similarly isolated.

Because young adults are “digital natives” (Prensky, 2001) and comfort- able with websites such as Open to Hope (www.opentohope.com), the Internet provides popular sites for younger bereaved people. The Internet offers oppor- tunities to explore and understand experiences with loss in a safe, caring, and online community. Open to Hope was created by two psychotherapists and was designed to empower the bereaved and to help each person to feel heard and understood (Gilbert & Horsley, 2011). Most young adults are active with social networking and are using Facebook, Twitter, blogging, and other social media to maintain connections with the deceased and to grieve with others who share their experiences. The “off time” quality of these losses means that other young adults in their “nonvirtual” communities may not have experi- enced any losses such as theirs and technology allows them to find others who share similar losses.

Another pertinent issue for widowed young adults is dating, also asso- ciated with technology in this era. Dating can be a conflicted and difficult issue due to the changes in social norms since the young adult last dated. Further, loyalty to one’s deceased spouse may add complications. The idea of loving someone new can evoke a range of feelings from a signal that one is healing and ready to move forward, to a perception that this is a betrayal of the marriage (Walter, 2003). One young widow was conflicted at first

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because she had known her late husband since childhood and lived in the same town as her in-laws. Her loyalty to her late husband’s parents was almost as weighty as toward her deceased husband. However, she began resolving some of her conflicts when she began to emotionally relocate her late husband’s “memory in a place where it is accessible to her” while also integrating the memory into her budding new relationship (Walter, 2003, p. 45). This ability to stay connected to the memories of the deceased while forging a new life resonates with the continuing bonds framework (Klass, Silverman, & Nickman, 1996).

DEATH Of A NONMARRIED PARTNER. The largest growing group of romantic part- ners in both young adulthood and later adulthood are nonmarried partners (Walter, 2003). It is striking to us that since our first edition was published in 2009, there is still little literature available on the death of a cohabiting partner, whether heterosexual or same sex. Although the presence of social support is one of the most critical factors in the healing process after a death, partners involved in nonmarital relationships “are less likely than other groups to have this support, either at the time of death or for a period of time following the death” (Walter, 2003, p. 87). Nonmarried partners lack legal protections for the relationship and involvement with funeral planning, inclusion in inheritance, and decisions about the place of residence can all be quite complicated for cohabiting unmarried couples after a death. This lack of legal recognition for the relationship makes unmarried couples of all orientations similar in the bar- riers they navigate after a partner’s death.

Although norms are changing rapidly, there is still limited validation by our society for same-sex relationships and bereaved gay and lesbian partners may still have limited recognition and support after their partner’s death. When gay men and women are “out,” they are more likely to have a network of supportive friends and family who help them during bereavement (Shernoff, 1998; Walter, 2003), and they may be more likely to have married and have the legal protections granted in the states with same sex marriage. As gay relation- ships become more widely known and accepted, particularly in the younger generations, we expect that the bereaved will receive more support, yet may still struggle with the “off-time loss” aspects of losing a partner during young adulthood.

Hornjatkevyc and Alderson (2011) found that the bereavement of gay men is more similar to straight widowers than different. Their grief is focused on life with the partner and life without the partner, just as straight widowers tend to focus in that way. Development of the continuing bond is important to each group. Following deaths caused by AIDS (thankfully a much less com- mon experience than in the past), the deceased partner experiences additional stresses (Walter, 2003). The surviving partner may face the demands of coping with his own infection as well as the burden of losing his loved one through illness. Ironically, in gay partnerships, community members often attributed deaths to AIDS even when the cause of death was due to cancer or some other disease, and this can lead to stigma and concern that distracts from grieving (Hornjatkevyc & Alderson, 2011).

Lesbian partners may lead a double life as they work “among the heterosexual majority but develop hidden networks of support, activity, and

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resources within the lesbian community” (Deevey, 1997). Bent and Magilvy (2006) describe lesbian culture as being hidden within mainstream society. The experience of bereaved lesbian partners is not well understood and “cannot be extrapolated from the male experience with HIV-related deaths (Bent & Magilvy, 2006, p. 448). Four qualitative studies of lesbian women who have lost partners (Bent & Magilvy, 2006; Deevey, 1997; Walter, 2003; Whipple, 2014) documented the theme of disenfranchised grief. Whipple (2014) examined the narratives of 25 lesbian widows and found that these young adults encoun- tered legal and financial discrimination throughout their bereavement experi- ence, including during their efforts to create funerals and memorial services.

Dansart and Stevens (2013) report that bereaved lesbian partners felt invisible because of unacknowledged or silenced relationships, disempower- ment by family or church/faith, and dissonance between legal progress and social acceptance. In Walter’s (2003) study, one 32-year-old lesbian partner, Pauline, lost her 26-year-old partner in a tragic automobile accident 5 years into their committed relationship. The most difficult aspect of Jean’s death was that it was not acknowledged—Jean was seen as a good friend and roommate, but not a life partner. However, Pauline found that when she risked telling oth- ers outside of her lesbian network about their relationship, she received sup- port that she never expected. Yet both Jean and Pauline’s parents dismissed the nature of their relationship. Both women were young adults and the death was very sudden, creating a possibility for more complicated grief, made all the more likely by lack of support. Bent and Magilvy (2006) found that when the lesbian relationship was not disclosed, bereaved women received more negative support (they define this as exclusion from support) which led to hurt feelings and affected bereavement.

The ways unmarried partners (gay or straight) were excluded from impor- tant roles in rituals were associated with less resolution to their grief (Bent & Magilvy, 2006). Both Walter (2003) and Bent and Magilvy (2006) concur that while positive support from the community is important and encouraging, it is impor- tant to emphasize that the unpredictability of support may be stressful in itself. This unpredictability of support affects many unmarried partnerships, and may complicate the grief of the surviving partner. We believe that romantic partners in committed relationships likely grieve much like married partners; however, much of their healing will be defined by the level of social support they receive.

Young adults do not expect to lose their partners in young adulthood and the loss is out of sync or off-time. However, most young adults seem able to be resilient and move forward both professionally and personally. Memories and continuing bonds provide a source of comfort.

Nondeath Losses

Parental Divorce

Parental divorce is often experienced as a loss by young adults even if they are no longer in the household. Scabini and Cigoli (2004) found that young adults (who are usually undertaking new responsibilities) identify the major source of pain after parental divorce to be the loss of the parents as a stable point of refer- ence. Gender differences were apparent in the ways individuals projected into

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the future; females easily saw themselves with children and a partner who would provide them with the security of a united family. Young men also wanted a future where they would be part of a couple and a family, but expressed greater doubts because they feared repeating their father’s errors. The young adult males were found to have continuing doubts about their own ability to commit and to assume responsibility toward future generations. Despite some of the negative consequences of parental divorce, some of the young adults developed a sense of greater independence as well an increased sense of social competence (Scabini & Cigoli, 2004) and valued the ability to stay emotionally close to their mother. Suffice to say that gender roles played out in this study and seem likely to impact young adults’ grief after parental divorce.

Young adults in college seem to exhibit changes in their ability to commit to relationships when parents have divorced, and this may be related to fear of relationship loss. Researchers found negative associations between parental divorce and students’ own relationship commitment, generally mediated by students’ approval of divorce more generally (Cui, Fincham, & Durtschi, 2011). They found that these associations were mediated by whether the parental divorce was seen as a good thing by the student (when the student thought the marital relationship was poor) or whether it was viewed as unnecessary (the minority view). The mediating variables of relationship duration, approval of divorce, and approval (or not) of their parents’ divorce mean that there is no simplistic relationship that connects parental divorce to young adult’s poten- tial for divorce, yet these intervening variables also give indication that some young adults may experience their parents’ divorce as more of a loss (when it was viewed as unnecessary) than others. Further, in protecting oneself from the possibility of a relationship loss, some young adults may limit their own relationship commitment as a defense against loss.

Loss and Problems Related to U.S. Military Service

Recent U.S. military deployments are unparalleled in their frequency and duration (Kaplow, Layne, Saltzman, Cozza, & Pynoos, 2013). These multiple deployments (accompanied by high levels of loss) often lead to mental health problems. Army psychologists who conducted research in Iraq found that 30% of the troops (who spend an average of 56 hours per week experiencing high levels of combat) demonstrated signs of acute stress (28%), anxiety (13%), and depression (12%), and 30% are screened as having mental health problems when stationed outside fortified areas (Zoroya, 2007).

Young adult veterans who have returned from Iraq and Afghanistan face multiple losses and adjustments as they adapt to their former lives in the workforce and family. The returning veteran has “lost” the life she or he once knew and his or her family has been without this family member for extended periods of time. Posttraumatic stress disorder (PTSD) is rampant and many veterans return with traumatic brain injuries that leave them changed (Findley, 2010). Although widows and widowers (partners) of the Iraq/ Afghanistan wars will have to adjust to a life after the death of a spouse or partner, those whose partner returns home may experience the “ambiguous loss” (Boss, 1999, 2006) of having their partner back in body, but not back with the same identity as before combat.

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Gilin’s reading at the end of this chapter demonstrates how trauma treatment is used as an intervention for PTSD (complex trauma) with a young adult female who exhibits flashbacks, nightmares/sleep disturbances, overwhelming anxiety and somatic complaints/medical problems. As so many veterans return from service with PTSD and similar symptoms, this reading will elucidate in detail the main thrust of trauma theory and treatment which includes establishing safety, teaching strategies for calming down a hyperaroused nervous system (use of meditative deep breathing as one strategy) and using “grounding techniques” to guide awareness away from the past to focus on aspects of the present.

Chronic Illness

When a young adult faces a chronic illness and/or life-threatening disease, she or he needs to become self-absorbed in order to monitor physical well-being, which can make achieving intimacy more difficult. Because any serious illness involves increased self-absorption, one of the emotional risks of having a dis- ease like breast cancer at this stage of life is that it may push a young person toward isolation and/or meeting his or her own needs so that intimacy and/ or deepening of relationships becomes more difficult. Movement away from the self-focus of EA is challenged.

Another arena affected by chronic illness is the struggle for independence from one’s family of origin at a time when the young adult who is ill might need to rely on family. For example, a young adult who is diagnosed with breast cancer may want to remain independent of her family but may also need her family to help her through the difficult points of chemotherapy and/ or radiation. When young adults are diagnosed with life-threatening illness, this is out of the ordinary and untimely. Young adults seem to struggle with the tension between wanting to normalize their condition and recognizing the challenges their condition entails. In considering the narratives of many young adults with varied chronic illnesses, Heaton (2015) found that social compari- sons typically included comparing themselves as similar to their nondisabled friends and distancing themselves from people with similar conditions. This seems to indicate that the loss of health is connected to a loss of esteem for one’s condition. Losses may be compounded as family, romantic partners, and friends struggle to understand how to help and what sort of support might be needed. The young adult may feel robbed of a future.

Coping with serious illness and potential death means coping with an uncertain future at the same time that one is developmentally primed to find a place in the world. Conversely, coping with a serious illness can catapult a young adult into prioritizing, at a young age, what is most important to him or her. It may promote the willingness to take a risk to act on a dream rather than to assume there is plenty of time to pursue the dream, as most young adults can.

OTHERS’ EXPERIENCE Of A YOUNG ADULT’S DEATH

Loss of a Young Adult as Experienced by Young Adult

Little research exists on young adults’ loss of peers/friends either in the military service or in civilian life (Beardslee, 2013; Fink, Gallaway, & Millikan, 2013).

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Christian (2006) treated many young adults post-military service and says “One of the most striking lessons that I learned while treating these patients was that no matter the extent of their injuries, the amount of combat exposure or the number of deployments, the most salient aspect of their emotional suf- fering was dealing with the deaths of friends with whom they served” (p. 8). Christian (2006) found that grieving veterans often lack the support of their fellow veterans from whom they are separated when hospitalized. Important interventions include normalizing their grief and helping the injured vet to make phone calls and send letters to members of his unit to help alleviate the sense of separation and loneliness and to share grief about the members of the unit who died. It is difficult for the vet’s family to understand the tight bonds formed among military members under the stress of combat.

Fink et al. (2013) are concerned about the steady increase of suicide within the U.S. army since 2004. The rates surpass the age and gender-adjusted civil- ian suicide rates from 2007, with the U.S. Army and Marine Corps exhibiting the highest rates (Fink et al., 2013). Although there are mandated screening mea- sures in place to assist leaders in identifying high-risk soldiers, it appears that the stigma associated with seeking mental health treatment continues to be a barrier that keeps veterans from getting the treatment that they need (Fink et al., 2013).

To date, the emphasis on PTSD in young veterans and their families has been limited to the trauma experienced by the service member with little focus on their (or their family’s) bereavement experiences (Beardslee, 2013; Kaplow et al., 2013). Service providers need to better understand and address the chal- lenges encountered by bereaved service members, spouses, and children after the death of young adult military members. Kaplow et al. (2013) stress the need to examine the experiences of both “physical death as well as losses brought about by extended physical separations to which military children and fami- lies are exposed during and after deployment” (p. 323). Recognizing that grief and loss may accompany PTSD, allow a more comprehensive understanding of the diverse challenges confronting vets and their families and may aid in developing effective interventions and policies to support bereaved families (Kaplow et al., 2013).

Young widows who lost spouses during the 9/11 attacks and young wid- ows of veterans who have died in wars have similarities. In both cases, the bodies of spouses may not have been retrieved and in both cases the deaths were sudden and traumatic, often leading to complicated grief (Boss, 2004). The young adult war widow is confronted with a series of multiple losses. The spouse often suffers the loss of identity as a “military spouse,” loss of hous- ing (if the family lived on a post or base), loss of the way of life as a military family, and the “loss of feeling connected to the greater military community” (Harrington-LaMorie & Mcdevitt-Murphy, 2011, p. 267). The military has its own customs, rituals, educational and health systems, and spouses often have little opportunity to develop their own hobbies, support networks or careers (Harrington-LaMorie, Carroll, & Beck, 2014; Harrington-LaMorie & Mcdevitt- Murphy, 2011). This can add to the challenges of establishing a new identity. For the surviving spouse of an enlisted young adult, the death is immediate, involuntary, and requires a rapid transition from military to civilian life for the survivors. Spouses often have to make immediate decisions about moves, chil- dren’s schooling, and future employment, while grieving a traumatic death.

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Parents’ and Siblings’ Experiences of a Young Adult’s Death

The death of a young adult family member is chronologically “out of sync” and causes changes in the family structure. When a young adult dies, the loss often leads to prolonged grief due to the loss of the future marker events such as graduations, weddings, and births that family members have to endure throughout the life cycle (Harrington-LaMorrie, Carroll, & Beck, 2014; Walsh & McGoldrick, 2004). For parents and siblings, the loss of a young adult child can be complicated by ambivalent reactions to the young adult’s behavior (if applicable) such as drug use, risk-taking, life-choices, sexual or gender orien- tation, or any behavior that the family members may associate with the death in some way.

Families often mourn by remembering their deceased children with memorials, charitable organizations, and other ways of keeping the child’s memories alive. For parents of young adults who took their own lives (sui- cide), these public memorials are more difficult to negotiate. Nevertheless, families need to assure that the deceased young adult is “still part of the fam- ily” (Maple, Edwards, Minichiello, & Plummer, 2013). Finding ways to con- tinue the bond with the son or daughter they lost felt necessary and intuitive. Maple et al. (2013) observe that as parents became more “confident in their own grief experience” (p. 67), they were able to express these bonds more openly, and use and offer support more freely.

TYPICAL AND MATURATIONAL LOSSES IN EARLY ADULTHOOD

Loss of Young Adult’s Ability to Pursue Their Vocational/Career Aspirations

The economic depression that began in 2008 to 2009 is still affecting the ability of many young adults to realize their career goals and dreams. The vignette of Henry at the beginning of this chapter demonstrates how job loss can involve the loss of career goals and self-confidence. Kudu’s reading at the end of the Middle Adulthood chapter exemplifies much the same dynamic, although with less of the idealism and hope of young adulthood. Young adults are thwarted in the developmental task of establishing a place in the world; find- ing work that matches skills and talents and is satisfying is a critical task of young adulthood. One of the issues that young unemployed adults confront is that they must feel self-confident and make a good impression during a job interview at the very point where they are likely to lack such confidence.

The vignette also demonstrates how job loss can affect an entire fam- ily as they struggle to reset the balance of roles within the family. Although Henry found a meaningful way to cope with the loss of his “dream career” by switching gears, returning to school and preparing for a career that allowed more stable income and satisfaction, the family dynamics were changed. Although many young adults have not yet established families, work loss can change life trajectories dramatically in young adulthood.

At the end of this chapter, Shdaimah’s case presentation “Connecting and Disconnecting: Losses from Leaving Street Based Work” speaks to a young adult’s work-related loss of her image of self which comes in two

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forms—physical appearance and internal changes to her self-image. Writing about leaving the world of prostitution, Nicole experienced a heightened sense of shame as she encountered narratives created by the criminal justice system with its construct of prostitution as illegal, immoral, and offensive. Work, whether legal or illicit, tends to be a defining aspect of identity and worth, particularly in young adulthood. When work is lost, even when it is work one wishes to leave, identity is destabilized by the loss and must be renegotiated.

Delaying Decisions About Childbearing

In contrast to earlier cohorts of young couples, the majority of young adults in the last 25 years do not believe that having children is the main reason for getting married (Newman & Newman, 2006). Couples continue to embrace the value of parenting, but more see it as a choice rather than an obligation. Delaying parenthood until the late 20s to mid-30s, or even the 40s, has become a trend among young adults. “From 1970 to 2006, the proportion of first births to women aged 35 years and over increased nearly 8 times. In 2006, about 1 out of 12 births were to women aged 35 years and over compared with 1 out of 100 in 1970. . . . In 2006 only 21% of first births were to mothers under age 20, down from 36% in 1970” (Matthews & Hamilton, 2009, p. 2).

Women’s fertility rates decline after age 30 and miscarriages increase by age 40 (www.Resolve.org) and having a successful pregnancy becomes more difficult. Although reproductive technologies promoting conception have become increasingly successful, it is still difficult for women to conceive in older age. In fact, the rate of successful natural fertilization via regular sexual intercourse for a year is about 75% for a 30-year-old woman and only 44% for a 40-year-old woman (Leridon, 2004). Thus, delaying parenthood can result in infertility.

Fertility has been overlooked in the literature on life-course development, due to its focus on male development as a model for human development (Oktay & Walter, 1991). Although the percentage of married women between ages 15 and 44 who were infertile in 1982 dropped from 8.5% (2.4 million) to 6.0% (1.5 million) in 2006 to 2010, the rate of impaired fecundity of all women (infertility and inability to bring a pregnancy to delivery in any child-bearing age woman) rose from 11% in 1982 to 15% in 2002 and dropped to 12% in 2006 to 2010 (Chandra, Copen, & Stephen, 2013). Measurement of infertility, impaired fecundity, and couples’ barriers to pregnancy are much more com- plex than one might imagine, but the reality is that couples who are trying to achieve pregnancy feel loss when they are unable to have a child.

Fertility is an important component of self-esteem in both men and women. Those adults who discover infertility issues experience a marked decrease in self-esteem and self-confidence. Many couples (women in particu- lar) feel flawed and damaged when they do not become pregnant. The couple often experiences a deep sense of loss as a result of not moving into the “next step” of becoming a parent. Because childbearing is a normal developmen- tal milestone, being infertile thwarts a step in adult development (Watkins & Baldo, 2004). Feelings of grief are often present throughout years of trying

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unsuccessfully to have a child, particularly as couples face decisions about ending infertility treatments.

When the couple decides to end infertility treatment, the time mourning process begins (Cudmore, 2005). It is important for the couple to have their feelings validated and to have their counselor convey a solid understanding of the multiple losses they endure because of infertility. The loss of a biological child needs to be mourned if the couple uses adoption as their route to par- enthood. It is necessary for the couple to understand that “adoption does not cure infertility” (Walter & McCoyd, 2009, p. 203) and that some losses related to infertility will continue to arise throughout the life cycle even if the couple adopts a child. It is important for social workers to understand the relevant developmental issues, the ambivalent emotions experienced by clients, the physical and biological losses, the multiple stresses on a couple’s relationship, the impact on their social relationships such as isolation, and the challenges of finding meaningful ways to express their grief about the loss of a biologi- cal child. Through supportive interventions and the use of rituals, (such as letter writing to the biological child they will never have) many couples can grieve their loss of biological parenthood and make meaning from their pain- ful loss so that they can go forward in their lives. Other couples will require help adjusting to a choice to remain childless and to construct meaningful and satisfying lives that do not include parenthood.

Goldberg, Downing, and Richardson (2009) studied how heterosexual and lesbian preadoptive couples perceive and experience the transition from infertility to adoption as a way to become a parent. They found that lesbian couples seemed less committed to having a biological child and transitioned into adoption more easily than heterosexual couples suggesting that lesbian women may embrace more expansive ideas about how to create a family that are not based on biological relations. For all couples, the Resolve website (www.resolve.org) provides reliable information about infertility, including access to support services.

Losses Connected With the Transition to Parenthood

One of the maturational losses that new parents face is a decrease in the degree of intimacy within their marriage or partnership. Society does not often rec- ognize how much a couple has to negotiate and “give up” when becoming parents. Grandparents and other extended family are often so excited about adding a new member to the family that they, too, do not remember the chal- lenges involved in transitioning to parenthood. Ambivalent feelings about parenthood are the norm, yet many feel silenced from expressing the losses and difficulties of newborn care and changed priorities More than 25 studies show that the quality of most marriages decreases during the transition to parenthood, often quickly (Parfitt & Ayers, 2014; Shapiro & Gottman, 2005). Typically, marital quality decreases for 40% to 67% of couples beginning within the first year of the baby’s life (Shapiro, Gottman, & Carrere, 2000). A prospective study (218 couples) examined the effect of the birth of the first child on the marital relationship and found a sudden deterioration in relation- ship functioning after a first birth and the change persisted (Doss, Rhoades,

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Stanley, & Markham, 2009). Since one-half of all divorces occur within the first 7 years of marriage, these early years are high risk. Especially for new moth- ers, depression is also more likely to occur during the transition to parenthood (Shapiro & Gottman, 2005). Regardless of sexual orientation, and even when neither parent had given birth physiologically, the first year of adoptive par- enthood shows declines in relationship quality for all parents, with women generally having experiencing decreased feelings of love toward their partner (Goldberg, Smith, & Kashy, 2010).

Examining relationship, personality, and couple factors in 29 lesbian couples, this same decrease in love and increase in conflict was found in a prospective, short-term longitudinal investigation (Goldberg & Sayer, 2006). Similarly, O’Neill, Hamer, and Dixon (2012) found that lesbian couples expe- rience the transition to parenthood much as heterosexual couples do as they changed their focus from their relationship to their child. They differed from heterosexual couples in that they had to deal with heteronormativity and the “queering of parenthood” as they coped with boundaries related to the sperm donor. Family members’ unease with the method of conception also played a role in the couples’ relationship. At a time when the couple needed more support from extended family, lesbian mothers felt they were subject to feel- ing “judged, invisible or scrutinized by others such as asking who the real mother was, or how the participants had become pregnant” (O’Neill et al., 2012, p.  47). Despite the challenges of the transition to parenthood, lesbian couples felt their relationship was strengthened through their shared experi- ences and appreciation for one another.

Goldberg and Smith (2011) examined how both internalized and societal stigma effect the mental health of lesbians and gay men during the transition to parenthood through adoption. They found that higher perceived neighbor- hood acceptance and lower internalized homophobia were related to lower depressive symptoms, while higher perceived workplace support, family and friend support were related to lower anxiety symptoms. Furthermore, gay and lesbian couples who live in states with unfavorable legal climates regarding gay adoption experienced the sharpest increases in depressive and anxious symptoms.

In Goldberg’s (2012) book about gay fathers and the transition to parent- hood, she discusses the questions and issues straight parents never have to consider such as: (a) How important is it for each partner to have a biologi- cal tie to the child? (b) Will both partners legally be able to adopt their child? (c)  How will their lives change now that the presence of a child has made their relationship more visible to society? A striking psychological finding in 40  gay couples who had conceived their children via surrogacy was that fathers reported greater closeness with their families of origin and heightened self-esteem as a result of becoming parents and raising children (Bergman, Rubio, Green, & Padron, 2010). Gay fathers reported greater satisfaction with their couple relationships than heterosexual couples.

Goldberg (2012) found that the gay men she interviewed were comfort- able working out who would stay at home versus who would work based on their wage earning ability, comfort with children, and comfort with not work- ing in the paid work force. During their transition to parenthood, some couples experienced a reversal of rejection from family members who became more

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involved with, and accepting of, their gay family member once he announced his intention to parent. Adoption by gay men has become mainstream (see www.nytimes.com/2014/07/06/us/foreign-couples-heading-to-america-for- surrogate-pregnancies.html?_r=0) and we expect to see more comfort from family members and the general public as it becomes more and more common).

Parenting is a hard job that entails many joys, but also losses. Both straight and gay parenting couples need more support than is typically avail- able. Shapiro and Gottman (2005) found that 2-day psychocommunicative- educational workshops for couples making the transition to parenthood helped them to build skills to cope with conflict and maintain friendship and intimacy. Prior to parenthood, most couples are unaware of probable shifts in their marital relationship. Deave, Johnson, and Ingram (2008) found that new parents wished for more information about parenting and baby care (often provided by birth units within hospitals) and also about typical changes in marriages/ partnerships. Parents were surprised by the changes in their rela- tionships. Workshops need to be redesigned to attract prospective parents in order to increase their awareness of typical relationship changes and to actively encourage couples to discuss these potential changes. Interactive websites and mothers’ groups could be designed for supportive interventions as well. Workplaces would do well to allow parental leave and support for all couples as they navigate the transition to parenthood; the benefit to the next generation and the support of the couple relationship can be well worth the investment.

READINGS

Many, if not most, young adults are resilient and able to make meaning from their experiences with loss and grief, despite the fact that most losses during this time are off-time. The following case presentation of a young adult couple who lost a child provides evidence of how both Lisa and Mark move through the loss of their daughter by making meaning of their loss and by reconciling their marital relationship in the process of working through their grief.

Loss of a Child: Case of Lisa

Roseanne Muscarella

Roseanne Muscarella received a Bachelor of Arts in social work from the Catholic University of America in 1999 and her Master of Science in social work in 2002 from Columbia University. Roseanne has worked in family service and health care settings throughout her career, with a focus on palliative care and end-of-life care for the last decade. In having worked as both a medical social worker in a hospice setting and presently as a bereavement specialist, Roseanne has great passion for helping others work through and attend to grief issues all along the continuum of palliative care and hospice care.

Case Presentation

Lisa is a 26-year-old Latina female who lost her daughter Marissa 2 years ago to a malignant brain tumor, just shy of Marissa’s second birthday. Lisa reached

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out to me a month before the second anniversary of Marissa’s death to talk through some of her thoughts and feelings connected to Marissa’s death. In her words, the second anniversary of Marissa’s death was “bringing a lot of the old emotions to the surface,” and she was looking for an outlet within which to process this.

We met at Lisa’s home in suburban Philadelphia. Although I had not met her daughter when she was alive, the home was a living memorial to little Marissa and her memory. Picture collages and mementoes of Marissa were hung around the home, a daily reminder of her presence in the life of this family. Lisa and her longtime boyfriend, Mark, who was Marissa’s father, lived in the home with their now 19-month-old son, Nicholas. Lisa and I met biweekly for the next 2 months as she anticipated the arrival of the second anniversary of her daughter’s death. Lisa had tremendous support from family and friends in the initial aftermath of Marissa’s death. In contrast, Lisa felt much less support and understanding from those around her currently. Most other people encouraged her to “move on” with her life, and reminded her that “Marissa was in a better place.”

The most difficult of changes in Lisa’s life involved the nature of her rela- tionship with her boyfriend, Mark. Lisa remarked that she has believed the couple to be “drifting apart” for quite some time. She noted that the two had always had differing styles of communication—she was more forthright, more of an extrovert, while Mark was quiet and more passive in relating. In parent- ing Marissa, this combination worked well. In adjusting to life without their daughter, the two were not connecting and at times actually avoiding interac- tion. Lisa would attempt to speak about Marissa with Mark and Mark would not engage. Lisa felt very alone in this new wave of grief and the breakdown in communication with her boyfriend contributed to her sense of isolation. Mark was unable to talk about Marissa but he did visit her grave weekly. Lisa believed that this was his way of remembering their daughter. She, however, was seeking a way for the two of them to share Marissa’s memory and to com- memorate the second anniversary of her death together.

Developmental Milestones

In young adulthood, many couples are beginning to explore the idea of having children and the impact of this on their lives. Lisa and Mark were overjoyed when Marissa was born. They were amazed at how quickly they went from being a “couple to a real family.” Marissa was diagnosed with a malignant brain tumor when she was only one and a half years old. In an instant, their hopes and dreams for their daughter shifted from wondering if college was in her future to praying that she would defy the odds and overcome her grim prognosis. In our work together, Lisa shared her frustration about her “lost dreams” for her child. She mourned the birthday parties that would not be, the graduation ceremonies they would not attend, the loss of a future she hoped for her child. Her new son Nicholas, born after Marissa’s death, would never know his older sister. Given that “the natural cycle of life is such that the old die first and are replaced by the young” (Rando, 1986, p. 12), Lisa and Mark’s experience goes against societal norms and young adult expectations. This can make it difficult for those in young adulthood who have lost a child identify

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with peers of the same age and can contribute to the sense of being isolated and feeling “different” than others in the same phase of the life cycle.

Biological Impact of the Loss

While Lisa and Mark were caring for Marissa through her brain cancer diagno- sis, the couple found out that they were expecting a second child. Lisa recalls having great ambivalence about the idea of having a baby while her older child was battling cancer. Thoughts like “Will I have time to focus on the needs of a newborn?” or “What if my new baby becomes sick as well?” circled in her mind throughout her pregnancy. Lisa was honest about the initial few months in caring for Nicholas. At first, she was reluctant to bond with him as she feared that she might lose him too. Over time though, she found great comfort and purpose in being able to maintain and expand her maternal role. “Nicholas gave me a reason to wake up each morning,” she shared. Barrera et al. (2007) highlight the same idea: having living children is a predictor of being able to integrate one’s grief into daily life over time. Caring for her new baby gave her hope and sense of gratitude for what remained in her life. Having Nicholas to take care of did not take her pain away, but it did allow her to negotiate the loss in her life with new meaning and a renewed parental purpose. In observing Lisa with Nicholas, it was clear to see the joy and meaning that motherhood gave to her. His life gave her tacit permission to reinvest in her life again.

Psychological Impact of the Loss

One of the primary reasons that Lisa reached out for bereavement counseling was that she described having an increase in anxiety as the second anniver- sary of Marissa’s death approached. Lisa described having more vivid dreams, including one in which she was told that “she was not a good mother.” She shared that she was starting to believe this in some ways. Lisa remarked that she did not cry for Marissa like she once did and still wished there was some- thing she could have done to prevent her death. Barrera et al. (2007) highlight the idea of the parent-child bond and how grieving can be more complicated when a child is lost as it may “. . . heighten profoundly the disruption of paren- tal self-identity and the parental role as protector and provider” (p. 148) to their deceased child.

To compound her feelings of anxiety and inadequacy, Lisa struggled with not being able to share this experience and her interpretation of it with Mark. Mark retreated from conversations that touched on Marissa and the impact of her absence in his life. Lisa attributed this in part to Mark’s personality style and yet she could not help but feel “left alone” in her grief experience. The lack of communication fostered an increase in hostility between the pair as well which seemed to be breaking down the relationship structure. Rando (1986, pp. 25–27) details the myriad challenges that befall a couple when a child is lost. Often normal patterns of relating are disrupted and guilt can be pervasive. Guilt stunts conversation within the relationship dyad. This dynamic seemed to be at play with this pair. Many relationship—and marriage—partners have great difficulty relating well after the loss of a child.

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Social Impact of the Loss

After losing her daughter, Lisa identified a shift in her social and familial group. As she watched her friends’ children reach their second and third birth- days, she could not help but think of her own daughter and feel as if she did not fit in with her friends and family in the same ways as before. Lisa also felt at times that her friends and family were surprised at how much she would mention Marissa and how uncomfortable it seemed to make others feel. It was important for Lisa to know that Marissa was not forgotten by others, that her life mattered no matter how brief in years it may have been. Neimeyer (2001) expands on the shifts that can take place in a bereaved parent’s social world; “They find that people will not mention the child’s name in their presence, that inquiries about how they are doing imply that it doesn’t hurt as bad as it does” (p. 81). At a time when social support and understanding can be so heal- ing, Lisa felt as if no one really could comprehend the depth of her loss. She found that she was often trying to make others “OK with it.” Lisa found that she began to look for new social networks and friendships; she found that her new coworkers did not see her as “the grieving mother,” as they did not know her before Marissa’s death.

Social Work Interventions

Lisa and I met five times around the second anniversary of her daughter’s death. Meeting in her home proved effective as it helped me to gain a larger understanding of Lisa’s external environment and how it impacted and ritual- ized the memory of Marissa. Lisa was very comfortable retelling her story of losing Marissa with someone who was not already a part of her life and who could allow her to share openly. In working with young adult bereaved par- ents, it is imperative to work toward validating their experience, as many feel very isolated in losing a young child. Understanding, empathic listening, and some education about the grieving process seemed to aid Lisa in her process. One of the other ideas that we focused on was helping her to find healthy ways to take care of herself and how to work through her struggles with Mark. Lisa began to keep a journal close by to write down some of her thoughts for when she needed to find emotional release.

She also put her feelings down on paper in a letter to her boyfriend, to attempt to convey to him how she was coping with Marissa’s absence in their lives. In our final meeting, Mark decided that he would join us for the session after reading the letter she wrote. While Lisa did much of the talking, Mark was able to speak some about his response to losing Marissa. Mark shared that he has trouble putting words to his feelings in speaking about his daughter. He reported that keeping busy with work and visiting her grave allowed him to “keep going.” Both Mark and Lisa were able to identify their differing coping styles but were working to find common ground as they were both committed to keeping their relationship intact. Mark agreed to listen more, even if he did not have much to offer himself, and Lisa agreed to go the grave with him more regularly.

In order to help broaden social understanding of their loss, the cou- ple was referred to the local Compassionate Friends bereavement group,

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a national organization developed for those grieving the loss of a child. At the group, Lisa and Mark finally had the opportunity to be around others who had more of a sense of what their grief experience has been like. Lisa acknowledged feeling a great sense of comfort in this, which she credits for helping her to feel more understood and less alone. In this way, she con- tinues to look for meaning with her continued connection to her daughter. Lichtenthal, Neimeyer, Currier, Roberts, and Jordan (2013) speak about the impact of meaning-making with loss; they reported higher rates of personal growth and improved coping over time for grievers who are able to make meaning of their loss. Through the group, Lisa strongly identified with other parents who lost a child, and she believes this aided her healing and ongoing search for meaning in Marissa’s death.

Each in their own way, Lisa and Mark continue to keep the memory and spirit of their daughter alive in them. While they “will never stop missing their little girl,” Marissa remains a very real part of their family to this day.

The Impact of Intimate Partner Violence on Adult Development

Barbara Gilin

Barbara Gilin is a licensed clinical social worker and a clinical associate professor at Widener University’s Center for Social Work Education. She has worked in outpatient and inpatient mental health settings and currently maintains a private practice where she specializes in counseling trauma survivors. She is certified in EMDR, a trauma- processing model for practice. In addition to providing individual and family therapy, she has run groups for survivors of domestic violence and survivors of child sexual abuse.

Introduction

Traumatic experiences across the lifespan affect development in many ways, and those effects have been well-documented (Briere & Spinazzola, 2009; Courtois, 2004; D’Andrea, Ford, Stalbach, Spinazzola, & van der Kolk, 2012; Rothschild, 2000). In this section, the effects of ongoing intimate partner vio- lence (IPV) will be explored, along with interventions that help victims to begin their recovery from the negative consequences and to move forward in their adult development. IPV is defined as completed or threatened physical, sexual, or psychological violence by a current or former partner (Saltzman, Fanslow, McMahon, & Shelley, 2002, pp. 20–22). Unfortunately, the experiences of the client in the following case example are far from unique. According to the U.S. Department of Justice, from 1994 to 2010, about 4 in 5 victims of IPV were female. Of the 3,032 homicide incidents involving females in 2010, 39% were committed by an intimate partner. During that same year, 3% of the 10,878 homicide incidents involving males were committed by an intimate partner. From 1994 to 2011, the percentage of IPV experienced by females fluc- tuated between 28% and 42%. Females ages 18 to 34 generally experienced the highest rates of IPV, throughout the formative period considered to be young adulthood (Catalano, 2013).

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The following case example will be used to illustrate the physical, social, and psychological consequences of living through the experience of IPV.

Jane was a 37-year-old mother of two children, an 8-year-old son and a 3-year-old daughter, when she first sought counseling. She was married to her husband for 15 years and over the previous 8 years he had become increasingly abusive to her, both emotionally and physically. Three days prior to calling for a counseling appointment, he became dangerously violent toward her after she told him that she wanted to separate from him. In front of their children, he viciously beat her and told her that the only way she would ever leave the house was “in a box.” She managed to get away from him and run to a neighbor’s house, who then called the police. After her first session with her worker where she learned about her civil and legal options, she obtained a Protection from Abuse order to keep him from returning to their home, and she filed criminal charges against him through the Police Department. During her first appoint- ment with this social worker, she was clearly suffering from the symptoms of acute stress disorder, which became a diagnosis of PTSD after 1 month of contin- ued symptoms of reliving the event in the forms of nightmares and flashbacks, and symptoms of hyperarousal, particularly heightened anxiety reactions.

Physical Development

During her first session with me, Jane was still suffering from the aftermath of the beating she received 4 days earlier. She had multiple bruises on her torso and arms and legs, and she flinched whenever she moved because of pain she felt in the area of her lower ribs. On the night of the abuse, she had been to the emergency room. In addition to her initial injuries, Jane became quite physi- cally ill with a serious virus within the month following the assault, requiring several nights in the hospital. Her immune system may have been compro- mised by the prolonged state of physiological hyperarousal that resulted from the traumatic beating she suffered.

There is a clear biological impact of trauma on the nervous system, including the brain (Le Doux, 2003). More specifically, in the event of a threat, the amygdala in the limbic system of the brain turns on two systems: one to mobilize the body to flee or fight through release of adrenaline and cortisol, and one to return the body to normal (Rothschild, 2000). In PTSD, it appears that the second system is not functioning properly. The brain loses the abil- ity to turn off the alarm reaction, which then causes the chronic hyperarousal seen in PTSD, including increased pulse and respiration, muscle tension, and chronic anxiety. Higher and more prolonged levels of cortisol in the blood- stream (like those associated with chronic stress) have been shown to have negative effects such as: lowered immunity and inflammatory responses in the body and slowed wound healing (Ebrecht et al., 2004). According to Campbell (2002), victims of IPV report more headaches, back pain, abdominal pain, pelvic pain, gynecological problems, and gastrointestinal issues. Cerulli, Poleshuck, Raimondi, Veale, and Chin (2012) conducted qualitative research and reported that female victims of IPV described constant fatigue and muscle pain, and immune dysfunction. “The inscription of pain on their bodies served as constant reminders of abuse, in turn triggering continual emotional and

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psychological pain and disrupting social relationships” (Cerulli et al., 2012, p. 778). These additional effects will now be explored in Jane’s case. Although the literature usually describes the experiences of the “victims” of IPV, it is typically more helpful clinically to refer to the clients as “survivors” in order to expand their view of themselves and their resilience.

Social Development

Like many survivors of IPV, Jane sometimes assumed responsibility for her husband’s mistreatment of her, a belief that caused her to isolate at work as well as from friends and family. Jane was employed full time as a college instructor but she never told any of her colleagues about the physical and emotional abuse she was enduring at home. She felt embarrassed that she was in an abusive relationship and she did not want others to judge her for staying with her husband. In her words, she did not want others to see him as a “totally bad guy” because she “still thought that he had endearing parts.” She alternated between knowing that what he was doing was not her fault and then, at other times, believing that she “must have done something wrong” for him to treat her the way that he did. This combination of loyalty toward her abuser and the internalization of his negative beliefs about her kept her silent and isolated for many years. As years passed, the isolation from others took more of a toll on her psychological well-being because her own “reality-testing” did not have the benefit of others’ perceptions of her many positive qualities. By the time she sought therapy, she acknowledged that her husband’s negative beliefs about her outweighed anyone else’s beliefs that might contradict his.

Psychological Development

In a research study conducted by Cerulli et al. (2012), women who were victims of IPV “described frequent psychological symptoms that included depression, anxiety, paranoia, panic attacks, and flashbacks” and these symptoms, like the physical ones, “lasted beyond the abuse and criminal prosecution for their perpetrators” (p. 777). IPV is one type of “complex trauma” (also called complex PTSD) which is defined as a type of trauma that occurs repeatedly and cumulatively, usually over a period of time and within specific relationships and contexts (Courtois, 2004, p. 412). Survivors of complex trauma include prisoners of war as well as “those subjected to totalitarian systems in sexual and domestic life,” including IPV (Courtois, 2004, p. 412). Characteristics of complex trauma include the following: diffi- culty in regulating emotions; changes in consciousness leading to amnesias and dissociative episodes; distorted perceptions of self, including a chronic sense of guilt; incorporation of the beliefs and perceptions of the perpetra- tor; chronic difficulties in trusting others; and somatic complaints and/or medical problems (Cloitre et al., 2012).

Jane displayed each of these six characteristics. Especially in the months following the assault that precipitated counseling, she suffered from over- whelming anxiety and terror that made it difficult for her to sleep at night

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and to focus on work and other tasks during the day. As time went on, more symptoms of depression appeared. According to Bonomi et al. (2006), “Compared to women with no IPV, women with recent physical and/or sexual IPV were 4 times as likely to report severe depressive symptoms and 2.6 times as likely to report minor depressive symptoms” (p. 462). Jane also experienced symptoms of dissociation, a common adaptation to trauma, which is defined as the “partial or total separation of aspects of the traumatic experience,” including the facts about what happened and also the physical and psychological reactions (Rothschild, 2000, p. 65). Thoughts, images, and sensations that would normally be connected are stored separately, in frag- mentary forms (Saakvitne, Gamble, Pearlman, & Lev, 2000). Jane reported feeling numb and disconnected from her emotions and body sensations at times, and was worried about how often she “felt like a robot.” Sometimes dissociated aspects of her experiences, for example, a distressing image or a body sensation, returned at night in the form of flashbacks that contributed to insomnia. She felt tremendous guilt at times about the abuse, stating that the first thought she had after every assault was that she “must have done something very wrong to deserve it.” Her difficulty trusting others was sadly reinforced by the failure of the legal system to protect her, for example, by charging her husband with only a misdemeanor after his near-fatal assault of her. Finally, she experienced somatic difficulties such as a vulnerability to ill- ness and accidents, and somatic memories of the abuse when she discussed the details of her traumatic experiences, particularly pain in her abdomen where she suffered the worst blows during the abuse.

Interventions

IPV impacts adult development in multiple ways and, therefore, the inter- ventions must address each of the consequences just discussed: the social/ relational, physical, and psychological. Because IPV inflicts serious harm on a survivor ’s ability to trust others, the most important and challenging “intervention” is the development of a safe and strong therapeutic rela- tionship (Pearlman & Courtois, 2005). Saakvitne et al. (2000) describe four elements of attachment-based healing that should be incorporated into a relationship with a trauma survivor: respect, information, connection, and hope (RICH) (pp. 13–15). One of the therapeutic qualities essential to devel- oping a “RICH” relationship with a victim of IPV is that of being nonjudg- mental. In the words of Jane, “I needed to walk through my options without being judged and without hearing, ‘Are you crazy?’” In 2000, Shamai con- ducted a study “intended to examine the subjective experience and subse- quent meaning given by battered women to their treatment” (p. 88). The findings were organized into themes including the value that the female survivors placed on having a worker who “listened without judging” (p. 91). Other themes that were identified as central in their treatment were: the discovery of “the right to be someone with legitimate feelings, thoughts and desires,” feeling less guilty about the abuse they suffered, and being helped by the worker to create and experience a “new self” (pp. 90–91). Jane too cited each of these themes as meaningful to her recovery.

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In addition to the reparative effects of a strong working alliance with a worker, the following interventions are helpful for survivors of IPV:

1. Provide information about the existing legal options, such as filing a criminal complaint, and civil options, such a protection from abuse order. In addition, information should be provided about community resources such as 24-hour hotlines and emergency shelters.

2. Even in a first session with a survivor, it is very important to create a safety plan that she can use in the face of future violence and threats. An exam- ple of a safety plan can be found at the website for the National Coalition against Domestic Violence: www.ncadv.org/protectyourself/SafetyPlan .php. When creating this plan with a client, it is often helpful to make a distinction between deciding to separate temporarily to be safe, from any later decision about whether to end the relationship.

3. Teach strategies for calming down a hyperaroused nervous system while recognizing the limits of those strategies when the victim is, in fact, still not safe. One method that helps to activate the parasympathetic, or “braking” branch of the nervous system, is a method of deep breathing where the exhalation is twice as long as the inhalation.

4. Recognize that the survivor is almost always ambivalent to some degree about ending the relationship with the abusive partner and, therefore, will need support to express all of her conflicting feelings. In Jane’s words, “Part of me knew I couldn’t take him back but part of me knew I was working toward making it ok to take him back.” Resist the urge to infan- tilize her and tell her what she should do. A more respectful and empow- ering intervention is to help the client weigh the pros and cons of various courses of action.

5. Assist the client to mourn any losses associated with the ending of the rela- tionship with her partner, including the hopes that she had at the begin- ning. In Jane’s case, her parents divorced when she was the same age as her oldest child and she was particularly grief-stricken that she could not provide her own children with the experience of growing up in a loving household with two parents.

6. Provide psychoeducation about a number of topics (the “Information” part of a RICH relationship) including, but not limited to: normal effects of repeated trauma on the nervous system, the very real harm caused by psychological abuse, the typical progression of IPV if the abuser refuses to seek help, the community and legal resources, and books and websites written by other survivors of IPV.

7. As described earlier, survivors have typically internalized the negative and harsh views that their partners have toward them and therefore, they can actually be distrustful of others who seem to have more positive views of them, including their workers. One of the approaches that Jane and others have found helpful is to have the worker state calmly that he or she has not seen evidence of a particular negative quality in their interactions with the client.

8. Warn clients that their partner’s physical and emotional abuse will not automatically end if the partner receives counseling and/or stops abusing substances. In the case of co-occurring IPV and substance abuse, workers

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can tell them that their abusers have “two problems” and they will need to work on each one.

9. Couples therapy should only be considered if certain conditions are met, including the following: both spouses should freely agree to couples ses- sions and the abuser admits and takes responsibility for his or her abusive behavior. The survivor commits to making his or her safety a priority (Bograd & Mederos, 1999; Goldner, 1998). “Couples work is contraindi- cated if the abuser expresses no remorse, denies his actions, only blames the victim, and has little commitment to change” (Bograd & Mederos, 1999, p. 303).

10. When clients are dissociated, use “grounding techniques” to guide their awareness “away from their internal (past) focus to aspects of the present (external) situation” (Saakvitne et al., 2000, p. 110). For example, help the client to connect to his or her body and personal control, and to the safe context of the current setting and the counselor.

11. In the case of ongoing sleep disturbance, depression, anxiety, and other symptoms of posttraumatic stress, refer to a psychiatrist for medication evaluation (Scott & Briere, 2006). Prazosin appears promising in recent studies for its capacity to reduce trauma-related nightmares and insomnia (Shad, Suris, & North, 2011).

12. Workers should be very mindful of the impact the work with survivors of IPV has on them, in terms of their emotional reactions and on their belief systems (McCann and Pearlman, 1990). In order to be effective with cli- ents, workers must make self-care a priority and must view it as a core skill necessary for competent clinical practice.

13. Advocate for laws and social policies that would bring justice and needed services to survivors. The website for the National Coalition against Domestic Violence is a good source of information on how we can all “take a stand” against domestic violence: www.ncadv.org.

Within the first year of counseling, Jane worked through her ambivalent feelings toward her husband and her feelings of responsibility for his abuse, and filed for a divorce. Sadly, her ex-husband continued to stalk her and to violate the Protection Order, and she reported these violations to the Police. A year and a half after she began counseling, he attempted to break down her back door and enter the house with two lethal weapons, but she was able to call the police before he harmed her. He was arrested and convicted and sent to prison and she was finally able to live without fear and to move for- ward in many areas of her life—socially, professionally, and physically. Her two children are thriving, academically and socially. Jane continues working very hard in counseling to understand what happened to her in her marriage, to understand why she acted as she did, and to finally believe that she was not the horrible person her husband always said she was. In her words, “I know now that I do not need to be embarrassed about what my ex-husband did to me. It was not my fault.” In both her friendships and her dating life, she has been able to learn how to assess sooner whether someone is trustworthy and to gradually assert her own needs. However, at this time, Jane is growing more terrified as the day approaches when her ex-husband is released from prison. Her nightmares have returned. Her own personal development is once again

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affected negatively by the need to prioritize her and her children’s safety and to put as many plans in place as she can to protect them all. However, she has made great progress away from the social isolation that she once imposed on herself. She has effectively reached out to many people who have been able to help her to make the necessary preparations.

Connecting and Disconnecting: Losses from Leaving Street-Based Sex Work

Corey Shdaimah

Corey Shdaimah is an associate professor at the University of Maryland, Baltimore School of Social Work. Her research and writing focuses on how people and the profes- sionals and agencies that serve them try to change, and adapt to, policies that they per- ceive as ineffective or unjust. Many of her projects use participant-driven methods that emphasize the perceptions and experiences of stakeholders about concerns that they choose to highlight. Recent research focuses on the experiences of professionals and stakeholders with court affiliated prostitution diversion programs in Baltimore and in Philadelphia. She is author of numerous articles on these programs and on the experi- ences of women in street-based sex work. She has also explored the mismatch between needs on the ground and policy responses in dependency court reforms, housing, and child welfare and, most recently in U.S. childcare. She is the author of In Our Hands: The Struggle for U.S. Child Care Policy (with Elizabeth Palley); Negotiating Justice: Legal Services Lawyers, Low-Income Clients, and the Quest for Social Change; and Change Research: A Case Study on Collaborative Methods for Social Workers and Advocates (with Sanford Schram and Roland Stahl).

Nicole* is a woman in her 40s who participated in Philadelphia’s Project Dawn Court (PDC). The PDC is a sentencing alternative for women with a minimum of three prostitution charges.** In Pennsylvania, this constitutes a second-degree misdemeanor punishable by fines of up to $5,000 and 2 years imprisonment.*** PDC is a four-phase program that requires participation in monthly court meetings, intensive probation (usually at least weekly), group and individual trauma therapy, and individualized requirements that nearly always include inpatient or outpatient addiction treatment and mental health services over the course of a year. Program violations are punished by a phase restart and sanctions. Successful completion leads to a dismissal of charges with prejudice (meaning the case cannot be filed again), and possible removal of charges from participants’ record with an additional year of “no evidence” of drug use or prostitution (Leon & Shdaimah, 2012).

Like most PDC participants, Nicole spent many years engaging in the street-based sale of sex for money. For Nicole, selling sex for money

*All names are pseudonyms chosen by study participants. **In describing losses from the voluntary or coerced transition from street-based sex work, I do not take a normative stance that people should desist from the exchange of sex for money or other forms of sex work. ***Four or more offenses are a first degree misdemeanor, punishable by up to 5 year’s incarceration and $10,000 fines.

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was inextricably linked to her drug use. Nicole attributes her initial drug use to childhood molestation. She did not disclose her molestation due to “embarrassment” and the fear that “my mom would be devastated. It was a friend of the family. It would of killed her.” Her inability to share her story was reinforced by the fact that this family friend was the “only one” who “could calm [her drug-using] father down.” As she got “older, when [drug] using got real bad, [and she] couldn’t work,” she turned to prostitution. Nicole’s sex work was intertwined not just with drug addiction but with poverty. Nicole had been dismissed from PDC but I met her when she accompanied with a friend to a focus group I ran. I interviewed her again about 2 years later, when she came to court to offer support to another friend in the program: “I wanted to see, I know Sara’s always [at monthly PDC meetings], and I wanted to see [the public defender] and a couple other girls I know that are still in the pro- gram or have recently just gotten in.”

For Nicole, PDC evokes a sense of community. She speaks of the sup- port that she found there among other women, as well as with her probation officer, lawyers from the public defender’s office, and the judge who had been the judge for most of her cases before, during, and after her involvement with PDC. She described an exchange with her public defender after a recent arrest: “I remember I called [the public defender], the one after these last 2 cases I said, ‘Can I get back in Dawn’s Court?’ She’s like, ‘Oh, Nicole, you hated it.’ I said, ‘No I didn’t. I don’t remember hating it.’”

Description of Loss

The picture of sex work, especially street-based sex work, is one of risk and hardship (Weitzer, 2009). This is reflected in the literature, and in the moral approbation and pity that is conveyed in the media, which often conflates any form of sex work with trafficking. I want to first make clear that while elements of Nicole’s story are shared among many street-based sex work- ers, her story does not represent all forms of sex work, or even all sex work- ers. Neither is her story a call to continue criminalization of sex work in the United States;  indeed many of the risk attendants to sex work may be more a product of criminalization than risk inherent in the work itself. Sex work is a viable, if not always optimal, choice for those who face extremely lim- ited options (Rosen & Venkatesh, 2008; Shdaimah & Wiechelt, 2012). Further, recent research with street-based sex workers has found they exhibit strength, resourcefulness, humor, an ethical compass, and mutual support networks that often go unnoticed (Oselin, 2014; Shdaimah & Leon, 2014; Shdaimah & Leon, in press). These strengths develop within communities and through life experiences. When ties to street-based sex work end, women may experience the disruption of their community and even the work itself as a loss.

Nicole’s story shows her continued sense of connection to the PDC community of women. Some study respondents believe that someone who has walked in their proverbial shoes can best understand their situation (Shdaimah & Wiechelt, 2012). Women provide advice, mutual assistance, and role models (Shdaimah & Leon, 2014). Women have described providing each

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other with a place to stay, “tricking” for one another if someone is “sick” and needs drugs, offering advice to help one another engage in sex work more safely or profitably, as well as advice to help one another desist from sex work, information on employment, health, and encouragement in times of trouble including the death of loved ones, loss of children, relapse, and general hard- ship. Diversion and recovery programs often encourage or require separation from what is referred to in “treatment speak” as “triggers.” The PDC, court probation, and treatment programs ask or require that participants sever ties with “people, places, and things” that may tempt participants to use drugs or engage in prostitution. The people and places that they are asked to avoid may be a community or even blood or fictive relatives. Avoidance is justified from the perspective of the PDC. Amy, a 30-year-old woman, described her relapse as a result of her desire to show her friends how well she was doing. She returned to the neighborhood where she sold sex and used drugs “and then I was off to the races.”

PDC participants are asked to avoid neighborhoods where they had lived and worked, which are also where they are most likely to find financial and emotional support as well as badly needed housing.* A maze of court-required activities including recovery programs and counseling hamper formation of new communities and relationships. Formation of new relationships is also difficult as many women are hesitant to discuss their participation in the PDC, their former lives, and their current struggles with others who may judge them. Once participation in the PDC ends, women lose even the community of court-involved women that come to mandatory monthly court hearings. Like Nicole, some “visit” court if their finances, employment schedule, and transportation permit. They return for the community of women with similar experiences, and for the criminal justice professionals with whom they have developed relationships: For some this is the judge, for another the probation officer, for still others the public defender or the prosecutor.

A second kind of loss is to street-based sex workers’ image of self, which comes in several forms. Perhaps least discussed are some of the physical changes that women experience, usually from ceasing to use drugs if they are addicted. CeeJay, a 26-year-old, described physical sensations she experienced as part of her withdrawal:

I have a boil, excuse me (rubbing under her arm). That’s what happens when you get clean, everything kind of comes through your pores. All the pores. Not just one, it’s like (noises) you’re sneezing and you’re, huh, you’re coughing up phlegm that’s not (from a) cold. It’s off your lungs (big yawn, then sniffling).

Many PDC participants gain weight, a frequent topic of court conversa- tion. The combination of addiction recovery that leads to increased appetite and the high-carbohydrate, low-quality food that women eat in jail, treat- ment programs, or on tight budgets leads to weight gain. Leaving prostitu- tion can also have positive impacts on participants’ appearance that come with better access to hygiene resources and medical and dental care. Whether

*These are also the neighborhoods where the majority of recovery houses are located.

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positive or negative, women underwent changes of appearance, which required adjustment.

Changes to self-image were also internal. In some cases, diversion and treatment caused women to change their thinking about past activities. Some began to think of their past exchanges of companionship and sex for shelter or security as “prostitution.” Recategorization of these activities, while likely motivated by a desire to encourage women to desist from prostitution, may deepen women’s shame. Nicole noted that she still engages in prostitution when necessary and she now feels worse about doing so.

Even though I was terminated, a lot of what I learned stuck with me. I mean I still sell (sex) ‘cause it’s hard to get a job out here sometimes, and you just kind of revert back to what you know. But it’s never the same after that. . . . It’s like it’s easy to do because it’s like you’ve gone from, it’s like a football player and football. You know how to play football. But it’s not easy in the sense, you’ve done all that work (with the therapy programs). And it’s like once I started doing that work, it changed it.

Prostitute women share narratives that describe themselves as moral beings (Shdaimah & Leon, 2014, in press). Seeing themselves devoid of legal opportunities to earn income, they choose prostitution; they elect possible harm themselves over other options that they view as more harmful to others, such as stealing from families or strangers, selling drugs, or home invasion. Feelings of stigma, shame, or a heightened sense of being immoral come with new narratives of prostitution that are created with the input of criminal justice programs that construct prostitution as illegal, offensive, and immoral. These may damage self-images that women have constructed that include a different universe of reference, and reviewing themselves through this lens constitutes a loss. They may lose a protective edge that is necessary for survival where women have few economic or social opportunities. Further limited by health problems and criminal records, this loss may leave women vulnerable when they leave the criminal justice system (McCorkel, 2013).

Similarly, in court and in treatment, PDC participants revisit aspects of their past that are connected to prostitution and drug use. Women frequently discuss lost years with family members and lost career and educational opportunities. Childhood and adult traumas (such as Nicole’s molestation) are revisited in therapy stimulating feelings of loss and mourning.

Practice and Policy Implications

We often fail to recognize that cessation of socially stigmatized (and illegal) activities may be experienced as a loss. Even people who feel satisfied and proud and experience these changes as an accomplishment, may grieve certain aspects of their life changes.* One of the recommendations for practice with

*See also Sharon Oselin (2014) on the process of role distancing and the formation of new identities among prostitute women.

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populations who are making voluntary or involuntary life changes around stigmatized identities or activities is to try to understand the full impact of these transitions. What are the communities that people may (be asked to) leave behind? How do these changes impact relationships with family, friends, and partners? How are people received if and when they may seek to make new contacts and to join new communities?

Changes to people’s self-image, both physical and internal, may also be ongoing as people reframe their past. It is important to help people balance a need to grieve over trauma and loss in the past while seeing themselves as capable of a present and a future where they accept themselves as wor- thy of respect and love. Since we know that prostitute women often draw support from one another, fostering opportunities for women who graduate from courts and treatment programs to meet and exchange advice and sup- port should be a priority. As experts in their own experiences, creating paid positions for peer counselors not only provides employment, but reframes a stigmatized past as a wealth of experiences that recognize women as valuable resources for one another.

Policy and programs must also be constructed and implemented with an eye toward understanding the full range of unintended and intended con- sequences. For example, if PDC participants are asked to stay away from the “person, places, and things” that “trigger” them, what can the court do to minimize the negative impact this might have on housing, or their ability to see their children? Program design and training of staff can work to avoid or mitigate these potential losses. Further, they can then help women cope with those losses and subsequent needs for community when and if they do occur. We can also learn from “unintended” consequences. If reframing that leads women to feel further stigmatized is, in part, caused by our societal attitudes toward prostitution, perhaps we should reexamine prostitution policy that so adversely impacts vulnerable populations. If staying away from “people, places, and things” means that women have no options for housing, perhaps we should reexamine the policies that shape the availability of affordable housing. In this way, some of the losses that women experience as they transi- tion out of street-based sex work can serve to educate us in ways that allow women to reframe their experiences not only as individual tragedies, but as a vehicle to broader systems change.

SUMMARY

The main theme that emerges from the literature and the case studies about losses encountered by young adults is that they are off time. Young adults do not expect to suffer losses of health, such as breast cancer or infertility, nor losses of spouses, partners, parents, children, colleagues, and friends. Young adults do not receive adequate support from their peers who are usually inex- perienced with such losses.

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Another theme of young adulthood is finding a place in the world of work. Most are unprepared for the possible barriers of the economy. When they fail to find work, lose their jobs, or need to move from their work for other reasons, they lose a marker of young adulthood while also losing a salient aspect of identity. These work losses resonate in ways that impair confidence and detract from self-esteem just as the young adult is finding a place in society.

Most young adults assume that they will be able to procreate so a dis- covery of infertility is shocking to them. Because childbearing is a “normative transition,” infertility thwarts a step in adult development. The transition to parenthood presents the heterosexual, gay, or lesbian young adult with an abrupt, dramatic change/loss in their relationship with their partner, which is unexpected and a loss/change for which they are generally unprepared. Young adults benefit from group support that allows them to interact with other young adults who are also dealing with off time losses. This removes the isolation and sense of oddness many young adults feel as they cope with their losses. Additionally, helping young adults to stay focused on future goals and plans seems to assist them with managing their grief and moving forward into the future where they can find their place in the world, the critical task of young adulthood.

DISCUSSION QUESTIONS

1. Discuss the similarities and differences between young adults who lose a parent and those who lose a spouse or partner. What differential strategies for intervention would you employ for each type of loss? If pertinent, please describe differential interventions for heterosexual and homosexual part- ners whose romantic partners die.

2. Describe how the maturational loss of transitioning to parenthood is similar or different among gay, lesbian, and heterosexual couples. How would you intervene to support young couples making this transition?

3. How would you help a young adult veteran and his or her family when they reenter their home environment following combat? Please note in your discussion the developmental tasks of young adulthood as they apply to your work. What resources are already in place to help families during this transition and how can they be improved?

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EIGHT

Middle Adulthood

Barbara, 53 years old and an only child, had always shared a close relationship with her 78-year-old father, Robert. Robert had been a research chemist for most of his adult career and retired at 70. He announced his lung cancer diagnosis at a small family din- ner. Barbara broke down and cried. Later, they talked and he shared some of his fondest memories of being with her. They cried together as he shared the news that his progno- sis was poor. Barbara took Robert to most of his radiation treatments because she loved spending time with him and knew her mother could not navigate city traffic. About 5 months later, Barbara began to feel preoccupied and unable to focus on the smallest task. She had vivid memories of her early tumultuous marriage and divorce. She also began thinking about her own mortality and became frightened that she, too, might develop cancer. Barbara felt unsupported by her husband or children; she felt alone, depressed, and overwhelmed. A friend suggested that she see a therapist.

Barbara found a clinical social worker who seemed to understand her fears and worries. Two months later, Robert’s oncologist asked to speak with her father, mother, and herself, and explained that it was time to consider hospice care because Robert was not responding to treatment and was physically fragile. Within 8 weeks of this meeting, Robert died with his family surrounding him. Barbara was grateful for the quality time she had shared with her dad over the years and recognized that her new role as caregiver for her mother was going to take a lot of emotional energy. Her social worker recognized the stress that losing a parent places on a marriage, and recommended that Barbara and her husband see a marital therapist during this time of adjustment.

Barbara continued to see her own therapist and began to work on ways to feel the presence of her dad through memories and photos. She limited her time with her mother to a few visits per week and she began to feel better over the following year. Barbara began to work as a tutor for children with special needs at the community center—work that she had been putting off for a long time but that would be satisfy- ing and meaningful to her. She began to live her life again.

OBJECTIVES

After reading this chapter the reader will be able to:

■ Understand the variety of losses that may occur in middle adulthood and how these losses differ from those of adults in other life phases.

■ Describe the developmental tasks of middle adulthood and explain how a midlife adult might cope with grief and loss.

■ Explain how theories of loss/grief/bereavement influence practice with midlife adults.

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DEVELOPMENTAL CRISIS: GENERATIVITY VERSUS STAGNATION

Within this text, midlife adults are defined as people between the ages of 45 and 70. With increasing longevity, middle adulthood may even extend into the early 70s. The “Retirement and Reinvention” chapter that follows next describes adults who are redefining themselves through their 60s, 70s, and 80s, and there is thus some overlap with adults in midlife. Midlife is characterized as a time of reassessing one’s life and priorities, grappling with awareness of mortality, and ideally moving forward with renewed commitment.

Biological Development

Midlife adults face a biological aging process that includes hormonal changes for both men (andropause) and women (menopause), beginning declines in energy, hearing, vision, and memory, all accompanied by graying hair and weight changes. Midlife adults must adapt to many changes in their “youth- ful” body. Watching the body change (and having these changes noticed by others) can be loss-filled. This is particularly poignant for women because American society is much less accepting of the physical aging process in women. Some adults feel these changes as “narcissistic injuries” while others adapt with more resilience.

The transition of menopause is one of the few aspects of midlife that developmental research has explored. Kanelis, Kostanski, Komesaroff, and Stojanovska (2009) found that some women were very upset by changes asso- ciated with menopause while others (although experiencing menopause as a stressful process) appeared to cope without great difficulty. The resilient group focused on faith, family and internal strengths, and actively looked for coping methods rather than blaming menopause for their life difficulties. The resilient women examined their relationships with their partners and others and used regular exercise, spending more time with female friends, becoming more asser- tive in their work environments, reflection and alternative medicine approaches such as massage, counseling, acupuncture, vitamin therapy, and diet adjustment to cope with their changing bodies. The women who had more trouble with menopause expressed vulnerability, envy of younger women, and had difficulty accepting that they were no longer young. They externalized all distress and disruption by blaming menopause (Kanelis et al., 2009).

Although midlife adults experience longer reaction time and short-term memory deficits, neuroscientists have concluded that the brain continues to develop, change, and adapt throughout life (Strauch, 2010). The growth of brain connections (neuroplasticity) allows us to make better decisions, to rec- ognize patterns faster, and to find creative solutions to problems. Brains in middle age begin to “power up” not down. In some cases, midlife adults begin to use both the right and left side of the brain instead of one side to solve prob- lems, a style characteristic of individuals with the highest cognitive abilities. One way to keep brains alive and growing is to actively explore ideas and people that challenge one’s view of the world. Learning new skills such as playing the piano or a new language prompts brain cells to reconfigure and rejuvenate (Strauch, 2010).

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New research demonstrates that what we do in midlife matters. Exercise, education, and good nutrition improve brain function and future health. Individuals who are depressed in middle age have a higher likelihood of decreased mobility and challenges with activities of daily living as they age (Covinsky, Yaffe, Lindquist, Cherkasova, Yelin, & Blazer, 2010). Although the connection between depression and disability in older age has long been known, Covinsky et al. suggest that knowing how depression in midlife affects us should spur us to intervene more aggressively to treat depression and its frequent comorbidity, coronary artery disease, to prevent later disability.

Psychological Development

Midlife adults desire a sense of effectiveness and want to “make a difference” (Newman & Newman, 2006). They want to leave a legacy behind for the next generation. The psychosocial crisis for this middle adulthood is generativity versus stagnation (Erikson, 1980) and involves a commitment to making life better for future generations. The term generativity includes the processes of creativity, productivity, and procreativity. Midlife adults hope to change the world by introducing new ideas or things or may create new relationships that will leave a lasting impression. Generativity involves making contributions to society that stand some chance of continuing after one’s death—these can be personal or professional. Stagnation refers to lack of psychological move- ment or growth. Stagnant adults are self-absorbed and unable to mentor new employees or invent new approaches in the workplace or invest emotionally in their families. They tend to be resentful, avoidant, and withdrawn.

Levinson and Levinson (1996) found that midlife individuals struggle with questions about family, work, independence, and marriage. Women moving into their 50s tend to work on deepening relationships (Arnold, 2005), a finding that supports the idea that midlife is a time of building and consoli- dating work, family, and community relationships. Arnold found that many women experienced a new sense of spirituality as well. During the midlife phase, many adults reassess and reorder their goals or priorities. The “midlife crisis” is rare if defined as a true breakdown or rejection of one’s prior life. However, most midlife individuals reassess their achievements and inner satisfaction with the hope of attaining a sense of fulfillment (Drimalla, 2015). Some midlife adults continue to work on the dreams and goals of early adult- hood, but many find this a time to take stock and work toward new goals based on deferred dreams and interests (Drimalla, 2015).

Midlife adults also confront their own mortality, often for the first time, as they face the fact that they have probably lived more years than they have ahead of them. The press of time creates a sense of urgency and the necessity to prioritize. Comparative life course research rooted in socioemotional selectiv- ity theory finds that young adults, with many opportunities still to come, pur- sue new relationships and possibilities, whereas midlife and older adults tend to invest in known relationships. They give priority to positive events and relationships, enhancing their sense of well-being (Carstensen, 2006, 2015). Arnold (2005) found that all 23 women in her study of women in their 50s viewed time as precious and as a commodity to be used wisely.

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Social Development

Many midlife adults face emotional losses as their families become reconfig- ured. Adult children leave the family home, causing the couple to “relearn” their relationship after years of focusing on their children. Many marriages are transformed and renewed; others suffer and fail. Research indicates that well-being actually increases as adults age, likely because of the lessons people learned about adapting to life’s contingencies, including lessons about how to cope with loss (Carstensen, 2015).

Typically, relationships with parents change during midlife. This often involves the death of one or more parents or the loss of the parent(s) they once knew to serious illness. Many midlife adults provide extensive caregiv- ing to aging parents and that can strain their marriage and relationships with their own children. As well, role reversal (the adult child parenting the aging parent) is a common source of stress in midlife (Lawton, 2014). When parents experience ill health and/or failing memory, midlife adults often are called upon to take over bills, household maintenance, health decisions, and other aspects of the parents’ lives. This must be combined with regular duties of work and home that most midlife adults are already juggling. Some midlife adults who become caregivers for their parent(s) experience multiple losses: the loss of the parent they knew, the death of the parent, and the loss of their role as child (Ziemba & Lynch-Sauer, 2005).

LOSS AS EXPERIENCED BY MIDLIFE ADULTS

Death Losses

When midlife adults are preoccupied with their own mortality, other deaths can heighten their anxiety. Still, enduring a death at this phase differs from bereavement in early adulthood because by midlife adults usually have expe- rienced a major death loss. They have coped before. Adults in midlife can also expect more support from their family and friends because they too have had loved ones die and can deeply understand the experience.

Death of a Parent

The loss of a parent at this point in life is somewhat disenfranchised, no mat- ter the intensity of grief. Seventy-five percent of adults have lost both parents by age 62 (Hooyman & Kramer, 2006). Precisely because it is expected, a death of this sort is not defined as a major disruptive loss and midlife adults may underestimate its impact (Marks, Jun, & Song, 2007; Umberson, 2003). A large national study (Marks et al., 2007) found that parent death in midlife is associ- ated with a significant decrease in both psychological and physical well-being for the adult child. Not surprisingly, those who have anxious, ambivalent or outright problematic relationships with their parents have more difficulty coping with their grief (Abeles, Victor, & Delano-Wood, 2004). Additionally, adult children may demand more of marriage following the death of a par- ent, a change that coincides with a decline in support from the partner and an increase in negative behaviors from that partner (Abeles et al., 2004).

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Marshall (2004) found that the loss of both parents is a “two-staged tran- sition” because adult children often are caring for the surviving parent after the first death. When the second parent dies, the adult child grieves for both losses more fully. In her study of midlife women, Dare (2011) found that the death of one parent places extra demands on women as they often carry the caregiving responsibility for the widowed parent. Women bear not only physi- cal and emotional caregiving responsibilities for a surviving parent, but often shoulder financial responsibilities as well (Dare, 2011). After the surviving par- ent dies, they may grieve the parents and the role they filled as caregiver.

The relationship with parents is usually life-long and influential. Adult children are aware of parental characteristics that live on in them, and grieve the security (or its absence) provided for them by that parent. After parents’ deaths, adult children often grieve for their deceased parents and for their loss of the child role (Hooyman & Kramer, 2006). Many bereaved adults are sur- prised to feel like “orphans” despite being in midlife.

Although the loss of parents during this phase is common, it is a major life transition and involves facing the eventuality of one’s own aging and death. (This experience is illustrated in the vignette of Barbara with which this chapter began. As she thought about her mortality she began to worry that she might die from cancer.) When parents die, the psychological barrier between midlife adulthood and death is removed as one ascends the generational lad- der. The loss of parents in midlife increases the adult child’s awareness of time left to live and can provoke reassessment of priorities and new sense of responsibility to self and others (Umberson, 2003). As midlife adults move up the generational ladder, they often begin to see themselves as keepers of tradi- tions and memories to be passed down through generations.

Parental death can also inspire spiritual awakening. Spirituality can be an antidote to the abandonment midlife adults may experience when parents die. “Healthy spirituality is inviting, meeting us where we are, as we are, not where others are” (Gilbert, 2006, p. 10) and can help heal wounds from unre- solved issues with one’s parents. This sense of abandonment may also lead the bereaved to deepen relationships with other family members or partners.

Death of an Adult Child

During midlife, the death of a child—most often a young adult or teen—is unexpected, traumatic, and can have long-term effects on parents’ lives (Rogers, Floyd, Seltzer, Mallick, Greenberg, & Hong, 2008). Rogers et al. (2008) compared results of nonbereaved and bereaved parents from a longitudinal study and found the bereaved parents to have poorer health, more depressive symptoms and they were more likely to have experienced marital disruption and a major depressive episode in midlife (Rogers et al., 2008). Better outcomes after a child’s death were associated with re-establishing purpose in life and having other children (a form of legacy, of course).

In response to the death of an adult son in the Israeli army, some par- ents decide to have another child (Hamama-Raz, Rosenfeld, & Buchbinder, 2010). Although this contradicts practice wisdom, these parents were found to actively cope in ways that seemed adaptive for them. The research found three dominant themes in the parents’ explanations: (a) “From the place where pain and sadness was sown, a new smile was grown,” which captures the way

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the death left a void and the new birth created joy; (b) “No to a child memo- rial,” as they actively coped to differentiate the new child and allow him or her to avoid the burden of being a memorial; and (c) “Different parenting,” as they had both higher levels of anxiety but more fulfillment in the parenting. Although the authors recognize that Israel’s pronatal attitudes may play a role, they assert that having another child is a form of meaning-making that helps these parents maintain purpose and hope.

Suicide among young people is a growing parental and societal concern. Gibson, Gallagher, and Jenkins (2010) examined midlife parents’ readjustment to the workplace following the suicide of a child and found that their most difficult tasks required good memory and concentration along with interac- tion and innovation. Parents felt that their “energy, creativity and confidence were significantly reduced following their bereavement” (p. 512). They coped by “shutting things out,” structuring their day, and choosing to complete spe- cific tasks only when they felt able. Parents were initially apprehensive about returning to the workplace and worried about how they would manage inter- actions and emotions. Parental survivors of adult child suicide often experience guilt, a sense of failure and shame, fear of being judged harshly, and a desire not to disclose the suicide (Begley & Quale, 2007). Maple, Edwards, Plummer, and Minichiello (2010) found that due to concern about being judged, midlife parents had limited open dialogue about, or refrained from discussing, their child. As a consequence, social support was limited and their healing process was inhibited.

Death of a Sibling in Adulthood

In the first edition of this text we observed that little attention had been paid to the loss of an adult sibling and little has changed. Most siblings spend 80% to 100% of their lifetime with a brother or sister (Packman, Horsely, Davies, & Kramer, 2006). The baby boom generation has revolutionized concerns about the numbers of midlife adults who will be coping with sibling loss (Taylor, Clark, & Newton, 2008) and due to geographic distance, they may often mourn without nuclear family support nearby. Some speculate that this cohort’s access to technologies like e-mail and Facebook will enhance opportunities for siblings who are geographically separated to maintain closer bonds than might be expected (Taylor et al., 2008), possibly leading to greater grief upon a sibling’s death.

Despite common belief, the sibling relationship “does not dissipate when people leave their parental home” (Godfrey, 2006, p. 6). Once par- ents are gone, siblings provide an important tie to the past; sibling ties often strengthen following the death of both parents (Marshall & Davies, 2011). Sibling relationships are important in adulthood and can provide compan- ionship, support and contribute to one’s sense of self as a family member (Godfrey, 2006). Surviving siblings must redefine who they are in the con- text of their family relationships including birth order and roles within the nuclear family (Harvard Mental Health Letter, 2008). When adults lose a sib- ling, they often miss the understanding, support, and companionship of the sibling, but on a deeper level they may grieve for a part of themselves that is missing (Godfrey, 2006).

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Nevertheless, sibling relationships are often fraught with rivalry and ambivalence and bereaved siblings may experience guilt, particularly when remembering a close childhood relationship that became more distant in adulthood. Additionally, bereaved adults may feel regret because the relation- ship was never quite what was desired or expected. Robinson and Mahon (1997) suggest that the relationships change as siblings approach adulthood, “with a decrease in reciprocity and, for many, an increase in complementarity” (p. 495). Thus, to understand the meaning of sibling death in adulthood, one must understand the nature and intensity of the relationship over time (Eaves, McQuiston, & Miles, 2005).

Sibling loss often is experienced as disenfranchised because a surviving sibling is overlooked as a griever, with the majority of support and attention going to the parents (Harvard Mental Health Letter, 2008; Marshall & Davies, 2011). Comments from others such as “Thank goodness it wasn’t your hus- band” or “You lived in different states, so you probably weren’t very close” (Harvard Mental Health Letter, 2008, p. 6) deny bereaved siblings support that validates their feelings and can prolong and complicate mourning by leading the bereaved to hide their grief. Additionally, adult siblings can imagine the impact of losing a child and believe it is their role to help their parents cope rather than focus on their own loss (Harvard Mental Health Letter, 2008, p. 6). Although the deaths of aging parents and spouses seem possible at midlife, losing a sibling is off-time and often disenfranchised, constituting a challeng- ing loss (Marshall & Davies, 2011).

An epidemiologic study (Rostila, Saarela, & Kawachi, 2012) found that losing a sibling at midlife has adverse health consequences for bereaved sib- lings and increases their mortality risk. Surviving sibs whose sibling took their own life may fear that they will die, particularly when they reach the age of the sibling who died (Linn-Gust, 2006). Supportive clinical interven- tion should be provided not only to parents, but also to siblings. Because sibs are often ignored by parents and others, it is important for health care workers to follow and support bereaved adult siblings for a longer period of time than expected (Rostila et al., 2012). Professionals can help bereaved siblings understand the importance of continuing bonds to the healing pro- cess, and suggest to bereaved siblings that they may experience relational changes with remaining family members. Online resources for adult sib- ling grief can be located at www.adultsiblinggrief.com, www.adec.org, and www. compassionatefriends.org.

The death of a sibling can color the surviving midlife sib’s sense of gen- erativity. Sometimes the remaining sibling becomes the “only child” and pro- vides care for the spouse/partner and/or child/children of the deceased, a profoundly generative act. On the other hand, bereaved siblings may feel obliged to provide support that can delay their own grieving. The sibling bond is peer-like so the death of a brother/sister forces bereaved siblings to confront their own mortality. Even so, Clark, Warburton, and Tilse (2009) sug- gest that personal growth often occurs following the loss of a sibling due to a changed sense of self, changed relationships, and changed philosophy of life (p. 273). Like most losses, the possibility for growth and maturation exists if the bereaved actively searches for it.

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Death of a Cousin

There is no professional literature on the loss of a cousin, but the increase in longevity means that many more midlife adults will lose a cousin with whom they may have shared a relationship more intimate than their relations with siblings. Indeed, the increasing number of one child families in the United States likely will result in many more midlife adults who rely on cousins to carry on the family heritage following the loss of parents, siblings, aunts, and uncles. Since adult sibling loss is minimized (disenfranchised), it seems likely that adult cousin loss is as well. Health care practitioners and other clinicians should be sensitive to the potential importance of this loss for midlife adults and act to support them.

Cousins can be of the same age and may have shared memorable child- hood and adulthood experiences. Because cousins do not share parents, there may be less conflict and ambivalence in their relationship than between sib- lings. Further, unlike sibling relationships, relationships with cousins are elec- tive. This may help cousins share more intimate thoughts and provide more emotional support to one another than adult siblings are able to do.

“I Lost My Cousin,” a reading at the end of this chapter, demonstrates the power and intensity of Judy Catterton’s relationship with a cousin. Judy and her cousin looked alike and grew up together in adjacent apartment build- ings. Judy’s reading demonstrates how she created continuing bonds with her deceased cousin by developing closer ties with other cousins. Packman et al. (2006) illustrate the unique continuing relationship formed by bereaved sib- lings and underscore the importance of helping bereaved siblings reformulate and maintain these bonds. Cousins are often “chosen siblings” with strong attachments, and we assume that emotionally close cousins can cope similarly.

Nondeath Losses

Facing a Chronic or Life-Threatening Illness or Disability

Most midlife adults deal with some serious health condition or physical dis- ability, even if only for a time. Facing chronic illness can be especially dif- ficult at midlife when people are focused on the biological changes of aging and their body image. Chronic illness among midlife adults is associated with their negative attitudes about aging (Thorpe, Spittlehouse, Joyce, Pearson, & Schluter, 2014). Chronic illness, new diagnosis, or disability forces individuals to adapt to changed physical abilities and new limitations.

Oktay and Walter (1991) found that midlife women facing breast can- cer felt vulnerable in the areas of body image, marriage, relationships with adolescent children, confronting death, reassessing one’s life, and generativ- ity. However, they also found that midlife women with breast cancer used this experience to learn how to take better care of themselves as individuals and found a new purpose in life as they reassessed their lives and dreams. Most of the midlife women who were interviewed felt increased self-confidence as a result of confronting their illness. They learned to become more self-reliant and to say “no” to activities that were not meaningful to them. They reflected on “What is my life about?” and “What do I want for myself?” Research on

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fibromyalgia indicates that women learn to live with their chronic illness over time and find new ways to restore balance to their lives (Friedberg, 2006). Chronic illness, new diagnosis, or disability forces individuals to adapt to changed physical abilities and new limitations. This seems to provoke a reas- sessment of life priorities that mesh well with the midlife developmental urge to “take stock” and reassess one’s life.

Loss/Transition of Employment

During midlife, people act in generative ways mainly in the family and the workplace. Work occupies most waking hours and is often where midlife adults are most creative. Many strive to meet new demands for skill in leader- ship, mentorship, and the expansion of personal relationships. During midlife some adults recognize that contributions they thought they could make are simply not possible through their chosen work. Others may recognize that they have achieved as much as possible in a given career and may decide to retrain for new kinds of work.

Due to the restructuring of the labor market in response to globalization and the recession of the late 2000s, many midlife adults with histories of steady employment, including increased responsibility and advancement, have faced job loss (see Kudu’s reading at the end of this chapter). Data (Huffington Post, 2014b) show huge job losses over the last decade (see this interactive map www.huffingtonpost.com/2014/10/30/geography-of-jobs_n_6069856.html). Many U.S. adults experience long periods of joblessness or underemployment and this can lead to poverty and/or a need to rely on ever more paltry social welfare programs. Although recent job numbers are improving, midlife adults are often in precarious circumstances, sometimes supporting both aging par- ents and emerging adult children.

Many adults do not have control over changing job circumstances and are laid off and have difficulty finding comparable work. This can be a severe loss, as they are out of work at a time when many are reaching the peak of a career and their greatest responsibility for assisting emerging adult children. Further, due to the American cultural emphasis on work as a principal dimen- sion of identity (for both men and women), chronically unemployed adults in midlife may experience guilt, shame, and anger. Joblessness often has a major impact on a midlife adult’s sense of self-worth and hope for the future that can lead to depression, passivity, and social withdrawal (Neimeyer, 1998). At the end of this chapter, Kudu describes how both she and her husband suf- fered simultaneous job losses and had a very hard time retaining a sense of self and confidence, an important matter when trying to present their best pro- fessional selves during job interviews. Job loss is challenging because while it requires mourning and time to cope with confusing feelings, there is little recognition for those needs. Social expectations complicate this further: Unemployed adults should be energetic and confident when seeking new work at the same time they are depressed, self-doubting, and confused about how to move forward.

Many secondary losses follow the loss of work. Job loss is usually asso- ciated with financial deprivation and increases in marital conflict. The entire family may feel ashamed and alienated from the society and its institutions

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as a result of joblessness. Family members and close associates often bear the brunt of anger expressed by the job loser because it is more difficult for the unemployed adult to direct anger at the employer (Neimeyer, 1998). Children may have difficulty in school or act out their anger and depression within their peer groups. On the flip side, social support—particularly family strengths and marital satisfaction—can be an important buffer against the distress of unemployment. Family and friends provide sympathetic, hopeful encourage- ment and buttress the belief that the job search is worthwhile. While the job search remains unsuccessful, they can provide a deep sense of caring that is critical to effective functioning. Kudu’s faith and connections to friends and family sustained her during her unemployment.

Sometimes unemployment spurs midlife adults to rediscover lost or dor- mant talents. This involves a redefinition of self and an opportunity to find more meaningful work that is sufficiently remunerative and helps to reestab- lish an improved fit between the midlife adult and his or her environment. This can lead to a more positive sense of self-worth and fulfillment.

Divorce

After decades of increases, U.S. divorce rates are leveling off and couples are now slightly more likely to reach their 10th anniversary, but divorce still ends about half of all marriages and midlife adults are now the most likely to be divorced (Amato, 2010). Baby boomers (currently midlife adults) had record rates of divorce in their 20s and 30s. Now in their 40s, 50s, and 60s, they con- tinue to have a high divorce rate (Huffington Post, 2014a).

Divorce changes relationships, assumptions, roles, routines, and self- concepts (Lloyd, Sailor, & Carney, 2014). For some midlife women, divorce rep- resents a transition of renewal, as they move out of a marriage full of conflict (Sakraida, 2005). For others, divorce strikes at the core of who they think they are and leaves them angry, destabilized, and mourning (Lloyd et al., 2014). The literature suggests that the frequency, duration, and intensity of anxiety, loneli- ness, and depression are greater for divorced women in midlife than for divorced younger women, tightly associated with whether they initiated the divorce or not (Sakraida, 2005). In the reading “Finding the Way . . . Again,” Clare writes of both the grieving and the new freedom that her divorce represented.

Studies indicate that compared to sociodemographically matched control groups, divorced/separated individuals show significantly poorer immune functioning and that existing disease/health problems are aggravated by a dif- ficult divorce (Kiecolt-Glaser & Newton, 2001; Sakaida, 2005). Financially and health-wise, women fare more poorly than men following a divorce (Lavelle & Smock, 2012). Their household income tends to decline, they may lose health insurance, and their housing may become less secure.

Although leaving a marriage has become more acceptable and legally easier, suffering and pain are still common (Maata, 2011). The pain of divorce is similar to that of mourning (Maata, 2011), although the pain/sadness is often accompanied by anger. Each spouse must confront unfulfilled hopes and dreams. Midlife adults face losses of self, partner, the sense of family, and changes of living situation as well (Baum, 2003). Mourning these losses is essential to one’s adjustment and ability to go on with their lives. However,

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Baum (2003) found that men tend to begin mourning later than women, which may stem from three factors: (a) women initiate divorce more often than men and thus start their grieving earlier; (b) women tend to be aware that their marriage is in trouble long before their spouses; and (c) women tra- ditionally assume the expressive role in the family. For many divorced, non- custodial fathers, grief for the loss of their ex-wives can be overshadowed by grief about their children, home, and family life, as well as resentment of the custody arrangement (Baum, 2003). Clinicians need to be alert to these dif- ferences when working with divorced men for whom grieving takes a more active form (often in acting out behavior) in which it appears they are not mourning the loss of their ex-wives. Clinicians can help men recognize their acting out (hyperactivity, somatization, and substance abuse) as expressions of feelings of loss, and assist them in discovering more appropriate mourn- ing behaviors.

Once they realize they can survive, midlife adults can emerge from divorce with a revised conception of life and new feelings of possibility. Separation and divorce produce insecurities and uncertainties, but also new options (Maata, 2011). Outcomes can be improved by letting go of some past dreams reassessing goals, and reordering priorities.

THE LOSS OF A MIDLIFE ADULT AS EXPERIENCED BY OTHERS

Death of a Life Partner

The most frequent midlife loss after the death of a parent is the death of a spouse, who is usually another midlife adult. In early midlife, the loss of a spouse or partner is unexpected. Bereaved spouses can be isolated with their grief as few friends have experienced this loss. At the end of this chapter, in “Losing Jack: Accidental Death of a Spouse in Midlife,” Jean writes of her iso- lation when “helpers” at Jack’s place of employment “just disappeared and acted like Jack’s death and my pain did not matter enough to follow through on what they had promised.” Friends sometimes distance themselves from a bereaved midlife spouse because that person’s grief demands attention to the discomforting possibility that it could happen to others.

Midlife adults who lose a spouse or partner see their loved one’s death as a harbinger of their own, and this loss may elicit perspectives more char- acteristic of older adulthood where death seems imminent. Additionally, the identity shift from “we” to “I” following the loss of a spouse or partner forces midlife adults to discover who they are without their spouse. Frank lost his wife when he was 42 and was left to care for their 4-year-old daughter. He changed dramatically after the loss:

I do think it has affected my personality. I don’t think I’m as goofy as I was before. I’m not as lighthearted as before. I’m more vocal. There’s a weightiness that I feel. . . . It’s just an excellent way for me to grow up. I have to deal with the tough stuff sometimes and unpleasant stuff, and that’s what the real world is about. Maybe I wouldn’t be doing that if Sarah were around. I had a buffer there. (Walter, 2003, p. 68)

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Similarly, the deaths of lesbian partners provoke stock-taking and reas- sessment just as any other partner deaths. A bereaved lesbian partner (Lea) reports:

I’ve become softer, kinder, and a more introspective person than I was.  . . . What I learned from my experience is that there are things you can’t fix and I didn’t know that at the tender age of forty-six. I had previously been called the fixer and that label is gone forever. (Walter, 2003, p.190)

Despite increased fears about safety and health and/or being alone, many bereaved spouses and partners use their more acute awareness of mortality in a positive way (Walter, 2003, p. 190). The loss makes clear that they must be responsible for their happiness. Studies demonstrate that those who remain married continuously through late midlife have the best psychological well- being, while those who become widowed early and do not remarry have the most depressive symptoms (Hughes & Waite, 2009; Sasson & Umberson, 2009). Because depressive symptoms diminished over time for the late- widowhood group and remained high for women widowed earlier in life, spousal loss can be seen to have implications for decades after the death (Sasson & Umberson, 2009). Unanticipated loss, common to early widowhood, may be part of the challenge as it is related to complicated mourning.

Hughes & Waite (2009) found that never divorced, currently married men and women had better health status than those who were currently married but had experienced a marital loss, whether divorced or widowed. Midlife adults who never married, as well as those who suffered marital loss, had higher rates of chronic health conditions and mobility limitations. Adults who did not remarry following a marital loss experienced worse health on all dimensions—chronic conditions, self-rated health, mobility limitations, and depressive symptoms (Hughes & Waite, 2009).

Although Jean (“Losing Jack”) vividly describes the depression and heartache she suffered following the accidental death of her husband, she also speaks of the comfort and help she found in belonging to a support group for widows. Jean also felt comforted by the support network of friends who helped her survive these difficult times. Coauthor (CA Walter) was widowed during midlife and 22 years later vividly recalls that a widow/widowers’ sup- port group was much more helpful than individual therapy, particularly dur- ing the first year.

Death of a Nonmarried Partner

Being widowed “carries with it a certain status that is recognized by the larger community” (Doka, 2002). When nonmarried partners die, there is no similar transitional role assigned. Little sympathy is extended for the emotional reac- tions of unmarried partners and their grief often goes unrecognized. Walter’s research (2003) provides documentation of this experience. Laura was 40 when her partner, Jake, died of cancer at 46.

I was just constantly reminded that I had no worldly tie to this person other than the fact that I had lived with him and taken care of him and

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loved him. It seemed as if nobody recognized this. . . . We partners live in a very small segment of society that sanctions a lot of things, but this isn’t the rest of the world. What I was doing was crossing a boundary. As long as I was within that little circle I was fine, but every time I had to cross that boundary it was one of the great difficulties. Losing a partner is an experience that brings home in a very funda- mental way how different our lives are. I have friends who are gay that have lost partners. They have a community that supports them and gives them sustenance. . . . I think they had more in the sense of an understanding community than I did. (Walter, 2003, pp. 120–121)

Without support for her feelings, Laura felt abandoned following Jake’s death. Further, Jake’s children, who had become like her own, distanced themselves once their dad was gone. As she had no children of her own, this increased Laura’s struggles with the developmental task of generativity. Laura believed that her changed relationship with Jake’s children following his death prolonged her healing process (Walter, 2003). In short, without marriage, part- ners have few legal protections and often little social support after a death.

There is little research about bereaved lesbian partners. The scant lit- erature (Deevey, 1997; Walter, 2003) reports that they face considerable dis- crimination during the phase of illness preceding death. In our first edition, “Illness, Dogs, and Discrimination: One Story of Loss and Grief from the Gay and Lesbian Community” described Rev. Sue Vollmer’s experience as she sat in the chapel of a hospital where her partner was having surgery for breast cancer:

I wandered down the hallway into the chapel, hoping for some quiet and the privacy for my prayer. Across from the chapel was the office of Pastoral Care, the place where the chaplains worked and spent time listening. I was grateful at first that I had found their office in case I  would need their help if Arden’s surgery went wrong or the news was as bad as I expected it to be. It was a comfort to know that I was not alone if I needed help. But my sense of safety and comfort didn’t last long. As I sat in the chapel I heard the clear sound of three voices, all talking about patients with whom they had visited, who they were certain and quite pleased it seemed, would go to hell. “They deserve it,” said one. “Disgusting perverts,” said another. And then I heard one voice say what whipped away the safety in an instant . . . those damn gays should all be dead.” There I sat, my partner in surgery, feeling afraid and unsure of the outcome, and chaplains of the hospital, the people who were supposed to be the comforters and the godly ones, were damning Arden, me, and our amazing circle of friends. (Walter & McCoyd, 2009, p. 234)

Bent and Magilvy (2006) found that bereaved lesbian partners perceived that support was actually withheld or removed, something they referred to as negative support. The bereaved had less resolution of their grief when nega- tive support was in evidence. In another case from Walter’s study of bereaved life partners, Corky’s family was particularly brutal toward Lea (her partner) in the final days of Corky’s life. Although Lea was Corky’s primary caregiver

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throughout her illness, “When the family gathered with the family physician, they took the case away from me” (Walter, 2003, p. 187). Much like Arden and her partner, Lea and Corky’s legal Power of Attorney document was not recognized by the hospital. Although it is more likely that lesbians who marry may not face this type of discrimination, those who remain unmarried may still face this discrimination within a society that is slowly changing its norms.

Like many bereaved spouses and partners, Lea developed continuing bonds (Klass et al., 1996) to cope with her loss. She stays connected to Corky through her pet-loss bereavement foundation, as Corky “loved all animals.” Continuing bonds may allow lesbian partners to reveal to themselves the rela- tionships that are often kept silenced by themselves and the society in which they live (Bent & Magilvy, 2006).

One (of many) complications gay men face is the reaction of medical pro- fessionals when a partner dies. Tom was 42 when his life partner, Rob, died from an AIDS-related illness. Tom has vivid memories of how he was treated by medical staff when Rob was dying as they would not allow him in the hos- pital room to comfort his dying partner (Walter, 2003). It is difficult for anyone to be denied access to a dying partner. Tom’s healing process was complicated by this denial of an important ritual.

For gay men in midlife who face the death of their partners from AIDS, it is particularly complicated because in addition to the loss of their partner, they are confronted with their own mortality and potential for dying in the same manner. Although this reaction (confronting one’s mortality) is similar to those of the straight bereaved partners discussed earlier, the bereaved partner of an AIDS patient faces the fact that he may be infected and may face the demands of coping with his own illness and possible death. He may feel he is rehearsing his own death (Walter & McCoyd, 2009). The literature is silent about whether straight people whose partners die of AIDS experience this same sense of rehearsal of their own death.

Hornjatkevyc & Alderson (2011) studied midlife non-AIDS related deaths and found that HIV/AIDS influenced these gay partners’ bereavement experiences, with others assuming the death was due to AIDS. It is possible that although our society has moved forward in legitimatizing gay/lesbian relationships “stigmatizing assumptions about HIV/AIDS could continue to be directed at bereaved gay men who have lost a partner to any cause” (Hornjatkevyc & Adlerson, 2011, p. 817). This study also addresses the similar- ities in bereavement experiences for gay and straight partners: The prior way of life is lost abruptly and these partners were suddenly ushered into being “single” after having established a life as a couple.

TYPICAL AND MATURATIONAL LOSSES OF MIDLIFE ADULTS

Loss Experienced by Parents When Children Leave Home

During midlife, many adults experience the “empty nest.” When the last child leaves home, changes in the marriage often follow, particularly when the home has been “child centered,” with parental activities, behaviors, thoughts, and feelings focused on the children. Many couples experience conflict at this

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point, having communicated little during the parenting years. Although cou- ples gain some freedom, they may also feel loss as relationships with their adult children change and they must find their romantic relationship again. This is a maturational loss that is often disenfranchised because family and friends see the change as uniformly positive. Some couples enjoy reworking their marital relationship and having more time for each other and friends. They feel “freed up” by the empty next and use it as an opportunity for per- sonal growth and growth as a couple. At the same time, adult children some- times return home due to finances or relational conflicts. This “return to the nest” requires restructuring family life again, and each party may resent the necessary loss of autonomy.

Loss of the Family Home

Homes symbolically define our sense of place, contribute to our identity, and add predictability to life (Hooyman & Kramer, 2006). Although home owner- ship in the United States has declined somewhat since 2008 and varies a great deal by race and income, it remains extremely common and widely desirable, especially among couples with children. Indeed, the mortgage interest and local property tax deduction provisions in the U.S. tax code dwarf other gov- ernment housing subsidies (Crowley, 2014).

Midlife’s stock-taking may conclude that the family home no longer serves current needs. Children move out and resettle; partners die or become incapacitated: for a variety of reasons, the space is no longer right. While there is little literature about the loss of the family home in midlife, it is an impor- tant concern of midlife adults. Although many seek a new home to establish a more satisfying lifestyle rather than from sad necessity, significant and often unrecognized loss is involved. The home symbolizes memories and space that are valued and a move may elicit sadness even when desired.

A major secondary loss that accompanies a home sale is the physical availability of long-term friendships made in the neighborhood as children are born, grow, and develop. Although new homes bring new friends, and good friendships can be maintained at a distance, life is different and some- what diminished without spontaneous, embodied contact with old friends. Midlife adults can most effectively cope with this maturational change when it is anticipated and acknowledged. Just as a new lifestyle in a new home pre- sents the midlife adult with new opportunities for challenge, growth, and a renewed sense of community, new friendships can also encourage growth in one’s relational life.

The Transformation of Identity and “Letting Go” of Past Dreams

The transformation of identity is developed further in the next chapter on retirement and reinvention. That midlife adults let go of previous meanings, understandings, and dreams is well documented (Arnold, 2005; Levinson & Levinson, 1996). Although letting go of previous beliefs and aspirations can allow new ones to be embraced, the transition may be accompanied by a sense of loss. In our 2009 edition, Shdaimah described how Ben, a legal services lawyer, had hoped to change the world to be more socially just but had to scale

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down his goals to meet the needs of individual clients. These career adjust- ments and analogous adjustments as family hopes give way to realities are forms of loss.

INTERVENTION

Roger (2013) found that midlife adults who lost parents needed help to focus on their intrapersonal resources. Their results suggest that the ability to find and maintain a sense of meaning while also making use of close, sustaining relationships is linked with more positive adaptation to this loss. Hamama-Raz et al. (2010) corroborate the use of meaning-making and purpose-finding as methods for coping with the pain and fear of loss after the death of an adult child. We can extrapolate from such findings that losses of all types may ben- efit from interventions designed to help midlife adults recognize the meaning they make from their lives and how relationships help to create that meaning. This fits with their developmental stage, which demands that they reassess their purposes and re-dedicate themselves to their future.

Cacciatore and Flint (2012) found that midlife parents coping with the loss of an adult child benefit from the creation of ritual and meaning-making as they attempt to heal from this difficult, life-changing loss. Ritual helps par- ents maintain bonds with their child, offers a sense of control, and provides a way for parents to move toward growth by honoring and memorializing their child. Parents who feel unsupported in their ongoing grief may mourn privately (Cacciatore & Flint, 2012). Bereaved parents often hide their pain, believing that it is so intense that others are unwilling to share it (Oktay & Walter, 1991). This reaction is similar to the isolating shame and concern about being judged that occurs among survivors of suicide.

Practice with bereaved people in midlife should include seeking creative ways to engage them in creating stories of their loss, using metaphor, symbol, and ceremony (Cacciatore & Flint, 2012). Practitioners can encourage the cre- ation of death rituals early in the grief process, capturing important memories and mementos that may help in coping with the loss over time. At a time when generativity is valued, helping bereaved midlife individuals to create some- thing lasting is likely to assist coping.

READINGS

I Lost My Cousin

Judy Catterton

I grew up in the Washington metropolitan area; graduated from the University of Maryland with a degree in English; attended law school at the American University. After over 30 years practicing law—first as a prosecutor, then in private practice with a focus in criminal defense work—I retired to the Delaware shore. I am currently engaged in creative writing and painting. I am married and have one son, one brother, and two cousins. I lost one cousin to AIDS and one to cancer. My essay is dedicated to “lost” cousins.

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Four of his photographs are sitting on a table in my living room. Two are of Venice; one is of a plein air painter standing next to a river; and the fourth is a city street in Paris where a large Hertz van is parked between two tiny Deux Chevueaux. My cousin’s hobby was photography and he was good at it.

He printed these photos for me because I saw them in his house and com- plimented him. He brought the prints when he and his wife visited a few years ago. I thanked him and, after they left, stuck them in a drawer.

The day after his funeral, I took them out. Now, I don’t know what to do with them. I can’t find a place for them on a wall. But, I can’t bear to bury them away in a drawer.

* * *

Our fathers were brothers, so for over 20 years, until I married, we shared the same last name. But we shared much more than that. As kids, we lived in adjacent apartment buildings in a neighborhood in southeast Washington, DC across from the Anacostia River. I was only 4 months older and a Tomboy so it was probably natural that we would be friends. We played together; walked to school together; learned about sports together; went on vacations together; and got in trouble together. At age 8 or 9 we even went to the bathroom together until our parents forbade it.

As kids we looked so much alike, people frequently thought we were brother and sister instead of cousins. We both had dark brown hair, bushy eye- brows, and until our teens, were virtually the same height. With our dark olive complexions, in summer, we both turned the same shade of warm cognac.

And then we lost touch. Why was that? We became teenagers; went to school; married; got jobs; had kids. We had our own lives. Maybe that’s expla- nation enough.

In the past few years, we began to see more of each other at family gath- erings: his mother’s 80th birthday, his daughter’s wedding, his stepfather’s funeral. There was even an event where we celebrated the successful removal of his cancerous kidney. He had such a wicked sense of humor, it didn’t sur- prise me when, he called himself “uni-kidney.”

For me, the beginning of the end was an e-mail I sent wishing him a belated happy birthday. It was May 2013 and he had just turned 68. Instead of e-mailing back, he phoned. That alone told me something was wrong.

* * *

Was it my imagination or did he sound just like my own father, his uncle, when he said: “I won’t make it to 70; I have incurable abdominal cancer.” Then, of course, came the details: the symptoms, the doctors’ theories, the dead ends, the false hopes, the second, third, and fourth opinions. I asked all the standard questions: was he satisfied with his doctors; was there really nothing anyone could do; was he in pain? All things that seemed important then and now don’t matter in the least.

A month later, he called again. If I wanted “to say goodbye,” he said, I’d “better come soon.” Of course, I had to go, but I was terrified. I’d never said goodbye to anyone dying before, never had the chance, all my “important” people having died suddenly. But what was I so afraid of? Was I feeling “per- formance” anxiety, as though I had a role in a play that had no script? Was my

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sense of dread a kind of denial? Did I not want to admit that this would be the last time I would see him; my last chance to apologize for past wrongs or slights I might not even be aware I had committed? Was I panicky because we had lost so many opportunities to remain close and now there was no way to “make up for lost time?”

* * *

He was lying in bed in the upstairs bedroom he shared with his wife. His large dog lay beside him, panting. A TV tuned to a Washington Nationals base- ball game stood at the foot of the bed, the sound muted. I had been forewarned that he had lost a shocking amount of weight; his 5’10” frame now weighed less than 100 pounds.

I pulled up a chair and sat close beside his head. His face was drawn; his cheeks sunken. He had the look of a Holocaust survivor. The conversation flowed easier than I would have predicted. We reminisced; talked some poli- tics; even some sports.

I knew before coming to see him that he was ready. I even knew that he was trying to hasten his death. He had told me on the phone that his life had dwindled down to nothing. He took no pleasure in it any more. A star football player in high school and more recently an avid golfer, now he couldn’t walk or even get out of bed unassisted. He was no longer able to eat solid food and even liquids were hard to swallow.

A tube of Chap Stick lay on a nightstand next to the bed. His lips parched, he asked me to apply some. But when I did, supplying the smallest amount of pressure, he cried out in pain.

His wife told me that he had wanted to live to celebrate his grandchild’s first birthday, then only a few months off. But it was now obvious he wouldn’t make it.

Being there, I could see for myself that he wanted to die. I know that made it easier for him. I suppose it also made it easier for me.

I’m glad he allowed me to say good-bye to him. I don’t know that it really mattered to him. I see it more as a gift he gave to me.

He died the morning after my visit.

* * *

It was his choice to be cremated. His wife wanted a burial, so they com- promised. His ashes were placed in a wooden box and the box was buried in a cemetery. Before it was lowered into the grave, we mourners formed a line and passed the box from hand to hand.

Cremation seems a most civilized plan to me too and I expect I will also chose it. But holding my cousin’s ashes was difficult. It seemed to me as though he was hiding from us. It reminded me of the countless games of hide and seek we played as kids.

Once the two of us hid in a storage room in the basement of one of the apartment buildings where we lived. Oddly, reminiscing the day before he died, he too remembered the boxes of Christmas decorations, the dust in the room, and the fear we had that day. Did we somehow manage to lock ourselves

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in there or did we just fear it? Would we ever get out? Would we be found? I look for him now but can only find him in my memories and his photographs.

* * *

For a time I found it difficult to get used to him not being. . . . Not being what? Around? Most of the time during the past almost 50 years, he’s not been around. I guess I found it hard to simply get used to him not being, not existing. After his death we started having “cousins’” lunches:” his sister and her husband; his widow; my husband and me, meeting in Annapolis, a town about mid-way between our respective homes. At the first couple of lunches I felt like we were flying in a “missing man” formation. I keep wondering what he might say; what food he would order; what joke he might tell. But as time has gone by, I have taken to simply enjoying the company of family. I guess I have my deceased cousin to thank for that.

I’ve had over a year now to reflect on my cousin’s death and what it means to me. What makes it different from other losses? We shared a child- hood together. But it’s more than that. Best friends can also share a childhood. We shared our childhood in the context of shared family. When my grandpar- ents died, his grandparents died. When his father died, my uncle died. When his mother re-married, my aunt re-married. When his sister married, he was the best man and I was a bridesmaid.

A friend asks if anything has ameliorated my feeling of loss. I have to think about this for a while till I realize. Yes, writing this essay has helped. And more than the writing itself, it’s the remembering that helps.

I remember the hot summer evenings when we played baseball on the makeshift field in a dilapidated area in our apartment complex, euphemisti- cally referred to as “the playground.” The games ended when we heard “dum ta dum dum” through open apartment windows, the signal that Dragnet was about to begin.

I remember the vacations our families took to Wildwood Crest, New Jersey, where at day’s end we sat on the lifeguard stand and later walked the boardwalk, stopping to admire ourselves in the distorted, “funny” mirrors. I  remember lying on picnic benches counting shooting stars and collecting Coke bottles at the recreation center to exchange for penny candy at the mom and pop store across from our elementary school.

I remember the day my uncle, my cousin’s father, died when he, a teenager, cried out in anger and anguish. I remember the day he married his lovely wife and the incredible speech he made at his daughter’s wedding a short 3 years ago.

Is there pain in the remembering? Yes, but a certain sweetness also. I real- ize that with the remembering, I honor him and the childhood we shared.

“Four Photographs” by Judy Catterton

4 photographs taken by my cousin an amateur photographer better than good

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all gifted to me all submerged in a drawer

After the funeral his photos surfacing so too my thousands of memories spring evenings playing baseball summer vacations picking blackberries in Wild Wood autumn nights lying on our backs on picnic benches counting shooting stars winter days mittened throwing snowballs Wearing boots and six-shooters walking to our neighborhood theater watching cowboy movies Just us, always the two of us together

Now, I’m the Lone Ranger The sole keeper of our memories by myself, I climb the sappy pine tree in front of our apartment unpartnered, I collect Coke bottles to exchange for penny candy I sit alone atop a turned over lifeguard stand on a Jersey beach, the sun descending

Losing Jack: Accidental Death of a Spouse in Midlife

Jean

Jean is an administrative assistant at a large university who is using only first names to protect her privacy. She was married to Jack for 27 years and continues to live in their home, care for their animals, and raise their horses.

On Tuesday, June 11, 2013, I received a call at work around 10:30. It was my friend Tara, whose husband worked with mine; they both were longshoremen who unload cargo containers on the waterfront. She told me there had been an accident at the pier and that I should go to the trauma unit at the hospital as soon as possible. A large forklift carrying a steel coil had backed over Jack. My supervisor, Rosalie, drove me. I had no idea how badly Jack was hurt. I always understood that Jack’s job could be dangerous with all the heavy machines and cargo. During the drive, I made phone calls to my sister and others; every- one asked me to keep them posted about how Jack was doing and said they would pray for him.

The drive seemed to take forever and I had a horrible feeling. I recognized that feeling from years before when Jack had called me at work and simply said

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I should come home right away. Then, I knew in my gut that my Dad had died, even though he was in good health—and I was right. I commented to Rosalie during the ride that I felt the same way now. When we got to the hospital we went to the trauma unit waiting room. When I arrived, the hospital staff was very kind and helpful. They let Jack’s coworkers and Tara and Rosalie stay with me in the trauma waiting room.

The Sunday night before the accident, Jack had an argument with a driver on the pier. Jack was so angry that he left work early that day, something that he had never done before. In the waiting room I said to his coworker, “Please don’t tell me it was the same driver that he had the argument with on Sunday.” He looked down and said it was the same driver, but that it was nothing to worry about—that it was an accident, and that on the waterfront they do not hold grudges. I cried the whole time. Tara tried to calm me but I just could not hold it in. I just knew the outcome was going to be horrible.

I continued to make phone calls to my sister, close friends, and to Jack’s family, from whom he was estranged. I knew both his parents had previously had heart attacks, so I called Jack’s siblings because I did not want them to hear the news over the phone; I wanted someone with them when they heard the news. Looking back, it is hard to believe how much I attended to others’ needs in all of this and not really my own.

Around noon, the surgeon came into the room to talk to us. She sat down across from me and very methodically gave me the details from Jack’s arrival to the present. Apparently his heart stopped in the ambulance. They were able to start his heart again and got him to the OR. The machine crushed his upper legs so he was losing a great deal of blood. The surgeon said she continued to suture the veins and arteries as she worked her way up to his abdomen. Again his heart stopped, so she opened his chest and got the heart going again. As she opened up his abdomen to continue to work on him, all of the blood and fluids poured out. Apparently his aorta was severed and there was nothing more she could do to save him. She told me based on the injuries that he would have gone into shock right away and would not have felt any pain, which gave me some comfort. She offered her condolences and told me how sorry she was that she could not save him. I understood why she told me the whole story before she informed me that he was dead. If she had started with the outcome first I would not have heard or comprehended another word she said. However, the way she gave the details to us—it still gave hope. I am really not sure which would have been easier, probably nei- ther. She told me they would clean him up so I could say good-bye. I wept uncontrollably when she told me he was dead. Tara kept her arms around me the whole time.

While we were waiting, a woman from the chaplain’s office came in to see if I wanted to pray. She asked me if I practiced a specific religion, to which I responded no but that I considered myself a spiritual person. (Jack claimed to be atheist but I never quite believed him. I am agnostic.) Upon hearing that I considered myself a spiritual person she started saying things about the Great Spirit, and holding her hands up in the air like she was a medicine man in an old Western movie. I really could not believe the things she was saying and doing. She never asked me what I wanted or if I even wanted her in the room. I just wanted her to leave. There I was in the worst moment of my life dealing with

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a stranger who had no idea who I was (and she did not try to find out) or what I really wanted. Advice to “helpers”: Ask if the bereaved want your company or if they would rather be left alone or with their friends, and certainly do not make it a dramatic reading of a prayer if that is not the person’s wish.

Finally, one of the nurses came in to tell me it was time to see Jack. She prepared me by telling me in a calm voice how he would look—with a tube in his mouth and a brace on his neck. She also said they had exposed his right hand and arm so I could hold it. She warned me not to lay across Jack or move the sheet—she wanted me to see him as I knew him. She was very calm. As I was led down the hall by the two nurses, the chaplain came with us. I have never seen someone so soon after death or touched anyone who was deceased. I remember I was so relieved that he was still warm. The thought of him being cold just scared me so much. The nurses came in and out periodically to see how I was doing—although they did not crowd me. One nurse asked if I wanted a lock of his hair, which I did, of course. She quite lovingly cut his hair and put it in a little satin bag and gave it to me. They were not intrusive and left me alone with Jack for a few moments at a time. They made sure they were in the background if I needed them but they were very respectful of my last time with my husband. Unfortunately the chaplain kept coming in and hovering way too close to me. I felt like she was intruding on my last precious moments with Jack. I just wanted her out, but I did not have the strength to tell her.

I left the hospital with Rosalie and my brothers-in-law got there just after I left. The rest of Jack’s family did not go to the hospital to say good-bye. I stayed with Rosalie that night. I called our doctor to let his office know what had happened. He called me later that night to offer his condolences and set up an appointment. He also ordered a sedative for me if I needed it. That night, I had to begin to make arrangements for Jack’s cremation; Jack and I had talked about death a number of times, so I knew what he wanted. No view- ing, just a cremation and a big party for his friends. I started to make calls to family, friends, and the funeral director. I made arrangements so Jack’s family could go to the funeral home to say good-bye before he was cremated. The contacts with his family were very strained and remained a source of pain for much of my bereavement. The next day I returned home and continued mak- ing arrangements and phone calls to family and friends. Although these calls happen for most people after a death, I had an additional layer of the people investigating what happened at the pier—the union, the owners of the pier, the Office of Occupational Safety and Health Administration, the police, to name just a few.

My Grief Over Time

The first months after Jack died seem like a blur of arrangements: I had to deal with the union, find out who was exploring the accident on the pier (OSHA and others), deal with bills and getting his last check and try to communicate with his family. I had friends and family supporting me who told me I was strong, but I felt numb and overwhelmed. I felt like I was going through the motions just to get through the day. A friend told me to get a notebook and track the phone calls, the to-do list, and that kind of thing. That helped because my brain only worked half as well as usual and there were so many details

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and follow-up calls to make. I was so worried about how I would make ends meet and it was nearly a month before I learned I would get Jack’s workman’s compensation. Life insurance, OSHA investigators, lawyers, doctors, they all swirled around me.

Other odd things happened though, too. The day I went back to the house after Jack died, a three-legged deer we used to see was standing in the yard. She usually ran away, but this time she stood there and we communed, I am not sure what else to call it, and it felt like Jack was with us. There was also a cat we called “White-face the cat” who would come around to the yard and then disappear for weeks on end. The day after Jack died, White-face turned up at the door and has never left again. He greets me every morning and night at the back door and follows me to the barn to be fed. He is a huge connection for me with Jack. We really cared about animals and there are these connec- tions that still hold us together.

Early in my grief, all the calls and arrangements took over. One of the things that stays with me over a year and a half later was how many of those people promised to help me, promised to get the real story about what hap- pened, and promised to get me the reports. I really believed that someone would do the right thing and tell me what had happened in Jack’s last moments on earth—yet over a year and a half later, I have no answers, no real report, and many bad experiences with people who did not do what they said they would do. When a healthy strong man leaves for work in the morning and never comes home from work, the surviving spouse really needs to know what happened. I am afraid I will never know.

As betrayed as I felt by many of the officials involved, I also had a tight- knit web of friends who tried to support me, but they could never fill the place Jack filled. Early on in my grief, those connections were comforting, but there was so much going on. That first month, I was surprised that I slept okay even though people warned me that might be hard. By the second month, I was having a lot of problems sleeping. At night I cried onto his pillow (I still have not changed his pillowcase) and held on to his kerchief. At first, I kept feeling his presence around the house. Life insurance people and the union would want documents I had not seen in a long time, but somehow it felt like Jack guided me right to them as I needed them. One time, I came home and a paperweight ashtray a friend had given him came flying off a shelf in his pool room, and in another room, a decorative tree was down with half of the sympathy cards. It felt like Jack was saying hi. Since then, I have had occasions in my sleep where I feel him kiss me, but he is not around the house as he was at first. I do not believe in lots of supernatural or religious things, but I know he was there.

I did not go back to work for almost 4 weeks and going back was sur- real as I returned to the desk where I got that horrible phone call. For months, I  kept having this feeling of “this is where Jack and I were only last month; this is where we had a great time together having drinks; this is where he said thus and so; this is where he was working when it happened. . . .” Everything had meaning and a moment that was ours alone, before he died. I also had to work really hard not to keep obsessing on what had happened in those last moments. Had the driver deliberately hurt Jack? All of the workers said no, but it was hard to believe. Had Jack had any awareness of what happened,

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or pain, or fear? I could not know, but my mind kept going back to it like a sore tooth.

In August, we had reserved seats at Saratoga Springs where we liked to watch the horses’ race. They allowed me to spread Jack’s ashes near the horse track. We raised horses and it again felt like a connection to be up there. When I sat in our seats that first day, a red-tailed hawk started circling over me and again, I felt like Jack was visiting me—it felt really good. When I went home, I was busy planning his memorial party, which was at the end of August. The planning felt important and comforting. One of his brothers had been support- ive at the beginning and so I had some contact with his family that way. His family, especially his mother, initially said they could not be there. Although his family showed up, as did many of his coworkers, I felt like some (his fam- ily especially) disapproved of the way things were done (implemented exactly as Jack would have wanted, even if irreverent). Once that was over, it was hard to know what to look forward to—I had started a legal civil investigation into what had happened, but there was little information and I knew nothing would bring Jack back. I cried alone at night holding on to his pillow and ker- chief. I talked to his ashes. I started the process of getting a quilt made of his T-shirts and a pillow out of one of his largest, favorite T-shirts.

By late summer, I started trying to get grief counseling. In September, I started an 8-week support group that was probably one of the most helpful things I did. One of the facilitators and one of the group members had also lost their husbands to sudden workplace accidents. Even though that September was filled with grief for me, the group really helped me survive. When I talked about waiting for the report about the accident, one had warned me “be pre- pared to be very disappointed.” At the time, I was a little upset, although I also appreciated how we widows were all honest and direct with each other. It turned out that she was absolutely on target—the main finding in the accident was that the driver that ran over Jack was not wearing a seatbelt—what?! My rage about that stayed high through October and November and my doctor found I had high blood pressure for the first time in my life that November.

The group members helped me stay sane as life insurance investigators questioned my husband’s health and treated me as if I was trying to get some- thing I did not deserve. The union and his employer never reached out with condolences, counseling or any of the care they initially promised. The group was one of the few places where I really felt seen and heard and could tell my story over and over again. They let me cry and rage and strategize even as they did the same things. The other widows gave me permission to organize Jack’s clothes when I was ready and to get three boxes—one to get rid of, one as a “maybe” box, and one that I knew I wanted to keep.

When the group ended before Thanksgiving, I realized that we all slog through our grief alone—even when we have friends and others who care. The nights are long and others are not available all the time the way a spouse is. As the holidays rolled around, the people who had been checking on me regularly started to drift away, but the long dark days and the lack of distrac- tions of arrangements made life even harder. Jack and I had always managed preparing for big snowstorms like a well-oiled machine: there were animals to protect and preparations to get in place. The first winter without Jack, there were snowstorms one right after the other and I was exhausted and depressed

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and yet I kept myself moving one foot in front of the other. Grief came in waves—some good days and lots of challenging ones, especially as I learned the extent of how little the union did to advocate for Jack and me.

I now know that the widows are right—there are no words that can com- fort; life will never be the same. I keep busy. I have friends who understand that I need to be allowed to cry. My friends know that I will try to come out and do things many times, but I also have to back out of things sometimes as I just cannot put on a happy face and show up. Recently, one of our homebred horses won her first race. It was so bittersweet. We finally got our first win- ner, but sadly Jack was not with me in the winner’s circle. I totally believe he was with me in spirit that day—I could feel Jack’s presence there. There are little moments when life is slowly coming back, but much of the time, it is still very hard. One widow told me “It will get better, but it will never be the same” and I believe that is true. Another told me that widows get to do what they want and I have taken that to heart. If I need to cry, I do; if I want to take a vacation, I do. I have heard that it takes at least 2 years before most wid- ows start to feel like they are living in their lives again, rather than just going through the motions. I suspect that those of us who have had no preparation for our spouse’s death and who never get the story of why she or he died may struggle a bit longer.

I wish I could convey to Jack’s coworkers, union leaders, and supervisors how much it hurts that no one has given me the whole story of what happened that day. To all the “helpers” who were supposed to get me reports, I wish they had never made the promise to get back to me with answers; instead they just disappeared and act like Jack’s death and my pain did not matter enough to follow through with what they promised. I wish Jack’s family and I could have shared our grief, but despite a sibling who tried to do so at first, the estrange- ment that had existed continued. I wish the therapist I saw briefly did more than just nod her head and I wish the chaplain had been quietly supportive rather than overtly prayerful.

Support groups are really helpful. Whenever I get the chance to talk with other widows about their experiences, I do. I try to stay busy when I have the energy as I know the distraction helps time pass and therefore helps me to cope with the new normal. Friends who stay in touch are vital, even if they cannot fill the empty space. It seems trite, but only time can heal. The other day, I said to a widow of 10 years “It never gets better, does it?” and she told me that she travels with her sister and that she enjoys her life again; “It does get better, Jean” were some of the best words I have heard in a long time.

Finding the Way . . . Again

Clare Smith

Clare Smith is a school counselor, a daily practitioner and teacher of Kundalini yoga, and a seeker of joy. She is a firm believer in finding the good in situations and letting the rest go. She lives in New Hampshire with her sweet golden retriever, Maggie, where she gets to play and hike and snowshoe and appreciate all the beauty.

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Divorce after a long-term marriage brings lots of loss and change, as well as potential growth. My ex and I were married for nearly 30 years. Prior to our marriage, we dated and then lived together for 5 years. Altogether, I was with Ned for 35 years before we divorced. I often tell people we were “puppies” together, because honestly, it felt like my whole life was with him! We weath- ered many transitions together including college, careers, had babies, raised babies, buried parents, experienced job losses, gains, promotions, teenagers, buying houses, and moving. We also experienced (each in our separate ways) marital stresses, emotional ups and downs, anger, pain, and loneliness within the marriage. I wanted to stay married until the kids all graduated high school. I wanted that stability. Looking back, I’m not sure that was wise, but why look back? Every decision has to be the right one, because you can never go back.

Along with the divorce, there was the selling of the family home and most of the furnishings. Simultaneously, my college age children were busy with their own lives and settled into their own apartments in states 800-plus miles away. During this time, I also put Ty, our family dog, down and experienced menopause. This tested my mettle and my ability to find new ground beneath my feet when all I had known as comfort and habit had evaporated.

Now that I was a “single” woman, I had to learn what that meant. I had never really been a single woman. I met Ned a month after graduating from high school and started dating him shortly afterwards. As a young woman, I  never really dated. But, now, before I could find out how to be a single woman, I needed to find out how to put one foot in front of the other. In a sense, the entire world I knew was different. I had to learn, and it took time, that the explosive loss of my prior life was actually the freeing and beginning of all that could come. Cognitively, I knew this, but my heart was heavy with loss and I had a very difficult time acknowledging the joy that could fill the emptiness.

There is a poem by Jelaluddin Rumi, “The Guest House,” that speaks to this loss and gain so beautifully, reminding us that everything that comes to us is an invitation to learn and to have faith that all is sacred and right. In the poem, the author observes that even “a crowd of sorrows” can bring one to a place of being open to “new delight.” The reader of the poem is urged to “Be grateful for whatever comes” and this is an admonition I took to heart.

While going through the divorce, I was fairly strong. Ned still lived in the house, at least part-time when he wasn’t travelling and it was a comfort to have him there. He slept in his own room, but we shared meals together. At the time, I thought it was a graceful and peacefully slow transition to the lives we would soon lead separately and I appreciated having him close. We weren’t fighting. We were negotiating change and learning to be friends. But, after the divorce, we couldn’t sell the house and so the clean ending became a bit fuzzy. He got an apartment in North Carolina while I continued to live in New Hampshire. I met a great guy, who turned out to be an angel in my life and also unfortunately a transition relationship that happened before I could emotion- ally sustain a long-term, permanent relationship. When Ned found out I had a boyfriend, he lost perspective and the friendship we were developing. He became rigid, angry, and obstinate. I was amazed and confused because we had been negotiating the end of our marriage fairly peacefully until that point.

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Yet, I had every right to be in a relationship postdivorce, and his angry actions only made selling the house more difficult and communication nearly impos- sible. Still, I remained fairly strong and had the safe and comforting arms of my new beau, to remind me that life does go on. Fast forward . . . the house finally sold and Ned and I finally began talking and rebuilding our new friendship. I realized I needed time without a man, and broke up with my beau to do some really deep healing, alone. My children came home less and less.

It was the fact that the kids were living in NC with their dad that sent me over the edge. It made sense because they went to college in NC and their dad was there with rooms to spare. But, when I would talk to them on the phone, I  could hear Ned’s new girlfriend laughing in the background. She was cooking for them, enjoying them, sharing their lives. I was far away and felt rejected from a family that another woman was enjoying. I no longer had a boyfriend, by my own choosing, no family nearby and the kids were with their dad and his new girlfriend. I felt isolated, alone, and unwanted. In the long, dark, New Hampshire winter of that year, 2 years postdivorce, I fell into a substantial depression.

I had been seeing a therapist through the divorce and began seeing her more regularly while I was dealing with this darkness of winter and my soul. She strongly suggested anti-depressants, but I rejected them. After the divorce, I found a spiritual community that supported and enriched my spirit and I was studying to become an interfaith minister. I knew that the only way through the depths of difficulty were to go through the difficulty. As the lotus blooms, not in spite of but because of the muck, I was determined to feel every morsel of my muck—my pain, every tear, every difficult step, until I was feeling bet- ter again. I had a sense that I would learn more from the experience by not numbing myself.

Looking back, I think I could have shortened the time of my sadness with medication, but I wouldn’t have been able to know the depths of my own strength to pull myself through one of my darkest times. I did it with the strength of my own soul. I pulled up my own bootstraps and wrung out all the drops of tears and sorrow like drops of water in a wet towel, wringing it out until no drops of water were left.

The social impact of my divorce was interesting as well. In the very beginning, I couldn’t say “divorce.” I felt there was such a stigma and I was never going to be that stereotypical bitter, divorced woman I envisioned. I was the first in my family to divorce, and so it didn’t feel comfortable to me in that respect either. My friends were married. In many ways, I felt alone with this. Thankfully, my sister-in-law in another state was going through the process at the same time and we talked on the phone frequently, offering each other com- fort and support. I remember asking my therapist if she knew of any support groups for women going through divorce in our area. She told me to Google for groups; so much for professional support. I didn’t find a group, but I did finally find my strength socially. I still don’t have a network of single women, but I’m working on it. I joined some meet ups, but haven’t attended any yet. I will. I can say “divorce” now! And, I don’t see it as a stigma. I am divorced, and happily so. I would have appreciated the routine and economic stability and comfort that a long life with one’s partner may give, but I traded that for self-respect and dignity. I traded that for finding my own voice again, one that

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was diminished and stifled for too many years. I not only found it, but I’m gaining strength!

I have mentioned some of the interventions I used. I had a therapist I stayed with through the years I went through the depression and aftermath. I had my last meeting with her after tapering off for the last year or so.

I also did a lot of spiritual work. The breaking open of heart and soul leaves one open to find a greater calling, more compassion and, if lucky, a bigger heart than ever before, because of the breaking open. I had a choice, to become bitter and lonely or to become open and loving. I decided, actually was easily led, to a place where I could work on growing my heart. I made an altar in my home, began to study mantra and meditation, and breathing techniques, and learned to chant in Gurmukhi and to pray to God/Goddess/ beloved. I began to feel bliss in this connection and have been able to explore my spirituality in ways that my (ex-) husband would have thought were “weird” and “out there.” I know we are all connected, all one, all loved. And, I feel that my work is to shine that light in all that I do, wherever I go. I work with teenagers and I feel I get to do very important soul work with them as I encourage them and support their paths. It is a calling.

Currently, I’m in a Kundalini yoga teacher training where I am deepen- ing my body, mind, spirit connection through yoga, pranayama, and mantra. It is an amazing practice as I travel, skipping with joy, further down this spiritual path. As I journey, I am closer to finding my own way, my deepest and sincer- est sense of self, and my connection with the One. I am more compassionate, more intuitive, more knowing and more confident. I am stronger in my body, mind, and soul.

There are days when I still miss my old life. I long to be a “mother” again whose children are close enough to be part of their physical lives. I even imagine playing with grandchildren. It is not so much the husband I miss, as that that part of life is done; karma served. In fact, I’m ready to reach out to another relationship. Finally I started to pray in gratitude for my husband (to-be), as though he is already here. I know what qualities are important to me, and I  offer thanks to God for bringing me this wonderful person with these qualities that I have identified through the distilling of what I know to be important—through the gift of introspection, time, and work that I’ve done these past 4 years. I know God will bring me what’s best for me, I trust in that. And, I’m smiling as I think of all the good times yet to come. I’m ready for that joy and my heart is open to possibilities.

What else do I know? I know that divorce is not fun at any age, but par- ticularly not at the confluence of menopause and empty nest. I know that I am strong enough to deal with huge yuckdom and come out on the other side with a joyful heart. I cannot express the immense gratitude I have for this progress. I found my way not through drugs, drinking, or even prescriptions. I found my way not through denial, or anger and hatred, or jealousy. While I did experi- ence pain and loss and all elements of grief, I found my way to love and spiritu- ality, trusting my connection to spirit far greater and more loving than earthly bonds. I am grateful for finding like-minded souls. I don’t know where this all will ultimately lead me, but I trust that my life is blessed as I surrender to the flow of life and the faith that we are all held lovingly through all of our days.

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I am standing on the mountaintop with the sun beaming brightly, warm- ing my very bones, and I am saying, “Hello, life. Here I am!”

Job Loss in Midlife

Kudu

Kudu was born in Zambia. She has lived in the United Kingdom and the United States. She lives in the greater Philadelphia area with her husband and two emerging adult sons.

We finally felt at home—confident and aware of what the expectations were. My husband and I had emigrated from Zambia to the United Kingdom and finally to the United States. Between our graduate education experiences along the way and our adaptation to new cultures at each step, we had finally settled into a small community outside Philadelphia. Tumbi was working as an architect and I as a systems analyst. Our boys were doing well in school, involved with their academics and athletics, and we had a community of neighbors and church folk who had become close. We felt like life was finally predictable and stable. This is how midlife is supposed to be—one knows what to expect and can move through life without quite as much effort as during younger adulthood when everything is new and striving is constant. Then the first crisis hit.

When Tumbi was “downsized” from his architecture position in August 2008, we had no way of knowing that we were on the early side of an economic spiral that would get worse before it got better. We knew that architect posi- tions were few and far between, but living near a major city, we thought a job would open up in not too long a time. With our oldest son exploring colleges, we knew losing an income was not a good thing, but my income was fairly generous and I had good benefits for the family, so we thought we could man- age until a position became available. As 2008 gave way to 2009–2010, we were hearing of all the massive job losses affecting many industries. Finding work was hard for everyone who was being downsized and for those whose busi- nesses were failing altogether. The first extension of unemployment benefits helped, but as the years dragged on with no new job for Tumbi, unemployment benefits ran out and things felt pretty desperate. Of course we knew that there were literally millions experiencing what we were, for some even worse, but having company did not make us feel less terrified.

Those years were challenging. Although Tumbi had unemployment com- pensation at first, it was demoralizing as he kept looking for a job and not getting one. He took a more active role at our church and with the boys, but he also started getting depressed. Looking back now, I see that—but at the time, I was irritated. I was working all day and coming home to a house where things still needed to be done. I could not really see the efforts he was making to find new employment. Our marriage was tense.

Eventually, he started going back to Zambia where he could make some small income and begin to build rental properties that might one day provide

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some support. By this time, our oldest son was at university and our youngest had started at a nearby community college. I was working very hard within a health system that had cut itself back to bare bones and was expecting all of us to work extra. There was lots of work stress, and then I would go home to deal with the household and two young men who were wonderful, but really needed the guidance of their father. Yet, he was 8500 miles away in Zambia and South Africa trying to make opportunities that could help our family. When he would come home, we tried to stay upbeat with one another. It was always wonderful to see him when he would first arrive at home. We would try to pack in family time, couple time, time with our neighbors and church, knowing that it was only a short time until Tumbi would need to return to Africa.

We scrimped and saved wherever we could and we were getting by, until the end of 2013 when the health system I worked for decided to downsize its offices in the Philadelphia area and I knew I would be without a job shortly. This was a terrifying time. The idea that we could have both our sons in col- lege and neither of us with an income felt like the uncertainty of the world was upon us. Although we are people of faith and our church and neighborhood communities were concerned for us, no one was likely to be able to support us if one of us could not find stable, well compensated work soon. I was explor- ing the new Affordable Care Act so that I would be able to make sure our health care was covered. I was counting every penny of my severance while I sent out resume after resume and went on interviews.

It is hard to convey the questions one has about oneself when approach- ing 50 and finding oneself out of work. The programs that are offered to pro- vide support for job-hunting make the assumption that we are young people with no idea about how to dress or present ourselves during an interview. Yet I had always had professional jobs, was capable of functioning quite well in international business settings, and certainly understood “the way the world works.” Yet now, I felt like potential employers were looking at me and won- dering how old I was. Did I have the future in front of me (and the low salary of a new worker) that they were looking for? Now we were both demoralized and it was a real challenge to keep each other moving forward.

I had written about the losses involved with immigration several years ago for the first edition of this Grief and Loss Across the Lifespan (Walter & McCoyd, 2009) text. Prior to that time, I had not really thought about loss and mourning as connected to things other than deaths. This time, I recognized the many experiences of loss I was having as a result of Tumbi losing his job and I losing mine. It was obvious that losing our incomes was frightening. What was less clear was how it affected our senses of ourselves. I know it affected Tumbi’s sense of himself as a man who supported his family and met his responsibilities. I saw him struggle with that and I felt terrible for him, even as I found it frustrating. When I was told that my job would end, I felt like a part of me had been given a terminal diagnosis. I did not know whether we would manage to survive or not. I prayed and had faith, but I also knew that many people had lost their homes, their marriages, and their well-being after losing jobs. In a recent article, the ties to loss were identified. Papa and Maitoza (2013) identify the ways identity losses are tied to grief and prolonged grief symptoms in their sample of mostly professionals. Self-esteem was a critical

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mediating factor in their study. I certainly knew that mine had dropped dra- matically when I realized we would both be unemployed.

During the time after my job ended, I had a very hard time not losing my sense of confidence in my abilities. At the very time I needed to be able to “sell” myself and my abilities during interviews, I found myself wonder- ing what they thought of my accent, my clothing, my style. I wondered about prejudices and even doubted my own capabilities. It was a very dark time. I  tried to enjoy having “free time” for the first time since I was a child—but it gave me too much time to think about all the things that could go wrong. I also found it a bit disorienting to have nothing that defined the time I needed to wake up or go to sleep, no set responsibilities that I must fulfill, and no coworkers to collaborate with while implicitly recognizing our value to the work and to each other. I also strongly felt the losses of a sense of purpose and relevance.

Only recently, I have found a job as a consultant for the state of Pennsylvania. It requires extensive travel to get to and from work, and it is not a long-term, guaranteed job, but a 2-year consulting contract. Nevertheless, it reminds me of the fine skills I have and gives structure to my days again. I realize that, like many losses, once that space is filled again, a lot of healing takes place. Yet I also think of the little things that helped along the way. One of the more important ways my family and I coped with the job situation was to involve our extended family (brothers and sisters) who were open and willing to listen and help. All we needed to do was ask.

Looking back, I believe I have learned some lessons. I realized I needed to stay connected with my church, friends and family for support. I also found comfort in believing that life is bigger than my circumstances. This belief comes from my faith background, which teaches us that God has a plan for me. Faith brought balance at times in the way I looked at my life. Even though I was depressed, I convinced myself that God’s plan for me was happening even if I did not understand or see it. In those moments, I was forced to look for positive things that were going on regardless of everything else. I always saw something positive (often feeling minor in comparison to the loss), yet that was what reminded me that not all was lost.

SUMMARY

Middle adulthood is a stage of life when much energy goes into transforma- tion of the self in view of the finite nature of life. Losses in middle adulthood are informed by this realization that one is mortal. There is a press to contrib- ute in a meaningful way to society so that one can leave a legacy to mark one’s life. Social workers and counselors can work with adults like Jean (widow), Clare (divorcée), and Kudu (job loss) by helping them realistically identify strengths and weaknesses and helping them realize what they have accom- plished, achievements often denied during the transitions of loss.

Midlife adults face many potential losses: of parents, siblings, spouses/ partners, cousins, health, and jobs. Meaning-making and the use of continu- ing bonds seem to be ways that midlife adults can weather the storm of loss,

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disappointment, and chronic illness. In two of the readings above, Clare and Kudu used their faith and spirituality to help them cope with their losses. Clare also used meditation for healing, a growing trend in intervention for those suffering a loss.

Practitioners can also help midlife adults work through their losses by validating deaths that may be disenfranchised (such as loss of a close cousin), helping them express their emotions and find meaning in their loss, and developing continuing bonds. For midlife adults, the loss of a parent or a child may mean losing significant socioemotional support from their spouses/ partners. Marital therapy can be suggested to strengthen interpersonal communication.

A bereavement support group where adults can talk and cry with others who have lost parents/children may be an excellent alternative or addition to individual and marital/family intervention. Coifman and Bonanno (2010) report that bereaved midlife adults suggest that emotional expression is only one aspect of processing loss: clinical interventions focused on helping to mod- ulate emotion—to move in and out of one’s grief—seem to help as well. This supports the use of the dual process model of bereavement (Stroebe & Schut, 2010), focusing on the oscillation between restoration and loss orientations.

DISCUSSION QUESTIONS

1. How is the loss of a parent different for a midlife adult than for a young adult?

2. Why might unemployment be viewed as a maturational loss for midlife adults? As a practitioner, how would you work with Kudu (case of job loss), her husband, and her family? In thinking about policy issues, how can the United States better serve families like Kudu’s?

3. As a practitioner, how would you work with Clare (divorce)? What is your rationale and what theories of grief/loss inform your approach? How are the issues of spousal death and divorce similar and different? How would you work differently with Clare and Jean?

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NINE

Retirement and Reinvention

Malinda was 65 when she officially retired from her position as a university professor. Malinda intended to continue to have a professional life after retirement, so she developed a website that she hoped would help her to reinvent herself at this stage of life, using the skills she had developed as a teacher, group leader, and as a psychologist. Malinda also continued to teach a popular elective that she had designed several years prior to retirement. Coinciding with her retirement, a local chapter of a national organization to help women in transition opened and Malinda planned to volunteer there. Knowing the importance of leisure time activities during this third quarter of life, Malinda joined a local singing group. Singing had been a passion for her throughout her childhood, adolescence, and some of her adulthood, and added to her enjoyment. Malinda and her husband enjoyed travel but were seldom able to do so for long due to her academic calendar. Once Malinda retired, she and her husband had extended travel each winter to exotic countries with warm winter climates. Malinda, having carefully planned for the perfect reinvention experience, believed she would move into this next phase in a fairly linear, progressive fashion.

The first few years of Malinda’s reinvention phase were fairly smooth. A col- league approached Malinda about doing some work at another university and she taught for them for 2 years with lots of energy expended, a nice salary received, but lots of stress and an end to the extended travel she had enjoyed. The neatly created postretirement life began to crack and Malinda became depressed, wondering what would help her navigate this next phase, which was beginning to look more like “fits and starts” than a deepening involvement in a passionate endeavor. Malinda and her husband moved to a smaller condo/home in the nearby city to enable access to cultural activities (theatre, concerts, museums, etc.) that they had always enjoyed. The move was much more demanding than Malinda had anticipated, and being in the city presented new challenges (parking issues, small spaces, shopping issues, and a feeling of isolation). Malinda will forge ahead as she continues to unpack and create a new community of friends and acquaintances. Malinda is in transition and a new phase of reinvention—she had thought that was all behind her.

OBJECTIVES

After reading this chapter the reader will be able to:

■ Understand the importance of redefining the self by choosing work that “matters” and rebalancing work, family, and time for pleasure.

■ Identify the anxiety and uncertainty that come with the losses/changes that adults experience during this phase.

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■ Describe how this life transition is different from those that come before and after.

THE TRANSITION TO THE THIRD QUARTER OF LIFE: REINVENTION AND RETIREMENT

The very title of this chapter suggests the difficulty in defining this life stage. This chapter is organized differently than the others due to the nature of this passage. Our text is one of the few that acknowledges this newer life phase which can span the years between 50 and 80 (Trafford, 2004). This chapter includes ages from the prior chapter on midlife and the subsequent one on older adults because this phase of life unfolds differently for people chrono- logically. We believe that understanding this phase is critically important for those working with the current cohort of baby boomers.

In 1900, the typical U.S. citizen had a life expectancy of 47 years (Trafford, 2004), and now the average life expectancy for White females is 80.5 and for White males, 75.5 (U. S. Census Bureau, 2012 Statistical Abstract). Aside from the longer lifespan, health is improved for many of those latter years. The “retirement/reinvention” revolution relates to increasing the quality of life in one’s later years. As life is prolonged, adults face the task of making those extra years as meaningful as possible. Through the 20th century, due to the extension of both private and public pension plans to cover retirees, adults began to expect a time of retirement from work as not only a possibility, but a right (Sargent, Lee, Martin, & Zikic, 2013). The necessary institutional sup- ports to provide incomes for most workers’ retirements were not established until the Social Security Act of 1935, and the old defined benefit pensions have given way to defined contributions to investment plans that put many retirees at risk for lagging financial support (Zurlo, 2012). Nevertheless, older adults expect to retire and hope to have the economic ability to do so.

Today, due to a variety of forces including the gender revolution, adults choosing second or third careers over age 55 (involving not just a change in employer but also in occupation—recareering), increasing numbers in the older adult population, and the increased level of education of these adults, there has been growth in new retirement pathways such as the pursuit of “bridge employment” (employment after retirement) (Sargent et al., 2013). This may allow retirees greater economic security while also allowing them to pursue occupational interests they had not explored earlier in life. Leaving a job or career requires reevaluation of identity. By midlife, identity is often intricately entwined with one’s work or occupation. The reevaluation of iden- tity when retiring, although reminiscent of the adolescent need to create a new identity, can be frustrating because adults in this phase of life expect to know who they are. This is part of what we deem a maturational loss as the part of identity that gives one a sense of self-worth will need to transition and worth will need to be found in other pursuits and endeavors.

The death of a professional or work identity can also jeopardize the sense of mattering to society or to oneself. Schlossberg (2009) claims that regard- less of gender or socioeconomic status, retirees need to feel important, appre- ciated, and noticed. For Schlossberg, who has written widely on this topic,

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“mattering” represents the centerpiece for adults navigating this third quarter of life. For the retiree, the need to be noticed, sought after, depended upon, and appreciated (Schlossberg, 2009) makes a difference in the ability to cope with the transition to retirement and the development of a new identity.

During this phase, the adult is continuing the midlife task of grappling with mortality and realizing that time is more limited and that there is not much time left to do what one wants to do. The transition to this phase is marked by the importance of setting priorities and deciding what is most important in the “third quarter” of one’s life. Finding new sense of purpose and activities that one enjoys help to ease the way into this retirement/reinvention phase of life.

Although transition and change generally breed uncertainty, retirement is unsettling because change happens on many fronts. Trafford (2004) writes of the “low-grade drumbeat of anxiety spreading across the land . . . of rest- lessness that affects people of a certain age” (p. 4). This is a social symptom of longevity and of the transitions of retirement. One has to confront the fact that in retirement, one may have to gear up instead of winding down as one works toward reinvention in retirement. Because options are not clear, adults in this phase of life do not know what to expect and may tend “to play it safe” because they do not know if the workplace will provide opportunities for them (Life Planning Network [LPN], 2013).

Corbett writes of a “revolt against the prospect of coasting through retire- ment” (2007, p. 6) and a need to “prune one’s portfolio,” by which he means focusing on the activities that feel they add purpose and meaning to life and pruning away the dead wood of activities that are not fulfilling. He believes that adults are electing to maintain some work during this phase because of a sociocultural change: While retirement was once characterized by elders enjoying memories, now later adulthood has become a time of new begin- nings. Ironically, the historical norm in American agrarian society had workers remain active as long as they could, though not happily. Now, for many, being active and happy in retirement is possible. In short, successful transition to retirement involves having economic sufficiency and identifying the activities and vocations that continue to give life purpose and joy.

Bratter and Dennis (2008) identified a shift in retired career women “from believing that external circumstances must somehow define how productive or useful we are—to defining that value for themselves” (p. 31). They conclude that the term “renew-ment” rather than retirement better describes this phase of life when women can live in ways of their choosing. This stage in life has become an adventure for many adults, rather than an ending or an experience to be feared.

RETIREMENT: DIVERSE PATHWAYS/MODELS/MEANINGS

Sargent et al. (2013) suggest that there are at least two contrasting kinds of reinvention of retirement. The first model refers to a clearly defined time at the end of the work life that may include activities not common before, but that accepts retirement as a stage of life. The second model differs in that it rejects the notion of retirement as a distinct phase. In the first model, adults choose to experience reinvention with the idea of a sustained distinctive experience. In

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the second model, retirement loses its characteristic of a distinctive stage with prescribed institutional supports and meanings. It is an ongoing part of life.

The readings at the end of this chapter reflect these models. Bill and Jean have adopted retirement as a well-defined period occurring after shifting from paid employment prior to “retirement age” to now engaging in meaningful work (whether paid or unpaid). Jean intends to stay active in social change and is part of the Granny Peace Brigade which she helped to create several years ago. Bill took on a part time paid position after he retired because it seemed so attractive to work in his field with a very good friend. Both Jean and Bill are fulfilled during this time of life with rewarding work, travel, leisure time activities, and learning.

Marcia and Norma both demonstrate characteristics of the second model as they both diverged from viewing retirement as a distinct period of time, wanting a very different life quite unrelated to the careers they had chosen. Both Marcia and Norma are heavily involved with meaningful volunteer work that provides them with great satisfaction. They are also both committed to a spiritual community, as Norma participates in the synagogue choir as well as many other activities at the synagogue, while Marcia practices yoga reg- ularly with a group. These are new ways of understanding the move from a life defined by work to one that is defined by the activities one pursues. Although predicated on having enough financial resources, even those with minimal financial resources are moved out of the workforce at a certain stage and nearly all experience the losses and transitions identified in the following.

LOSSES EXPERIENCED BY THE ADULT DURING RETIREMENT AND REINVENTION

Loss and Transformation of Identity

Similar to other life transitions, identity is revised once again. Leaving a job or career involves multiple transitions and leads to a life qualitatively differ- ent from one’s working life (Schlossberg, 2004, 2009). It involves much more than ceasing to work; it means the loss of one’s work identity, lifestyle, and structure of interpersonal relationships. Similar to an adolescent, an adult in this transition period has to “break away from traditional adulthood the way teenagers break away from childhood” (Trafford, 2004, p. xxi). Some experts believe that an important driver in this process is to listen to oneself and to others and to use instinct and intuition to identify what feeds the core self (Corbett, 2007). In transitioning one’s identity, the adult in this phase of life is rediscovering his or her passions. The Transition Network urges women (and this applies to all genders) to consider childhood dreams and to look for ways to rekindle dreams by pursuing something that intrigued one earlier in life.

In our first edition of Grief and Loss Across the Lifespan, Linda was grieving the loss of her past work identity, missing her past career successes, and the recognition she experienced when working in the arena of corporate sales and training. Linda also missed her job title, her paycheck, and the status that her earlier corporate career had afforded. For Bill, whose story is included among those at the end of this chapter, leaving work was emotionally difficult as his self-worth was tied up with his work identity; his friendships were also work

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based. He worked to stay involved with a number of his favorite activities on a volunteer basis so that he would maintain important connections. Bill’s ability to maintain his involvement with organizations that could use his leadership skills allowed him to transition into meaningful postretirement work, both paid and voluntary. In short, leaving work means a transition of identity and the struc- tures of friendships and activities that are often connected to work. Successful transition means finding new purpose and activity that feels meaningful.

One important way that an adult can prepare for this transition prior to retirement is to think about how one expects life to change. Reexamining roles, relationships, routines, and assumptions both before and after retirement can help with preparation for retirement (Schlossberg, 2009). When one gives up a job or career, one must learn to stop identifying oneself by company, title, or industry. To engage in this rediscovery, one must be able to tolerate some discomfort and anxiety.

One way to alleviate some of the anxiety of shifting identity at this phase of life is to imagine what one may do with one’s talents and passions. Bankson (2010) emphasizes how important it is to feel released from the hold work had on one before moving into the processes she prescribes for creative aging, including reclaiming, revelation, risk, and relating. In a reading following this chapter, Jean focuses on recognizing the gifts one has and thinking about how to use them on a new path. Corbett (2007) tells of a professor who delayed retirement because he felt that it indicated that he was no longer a scholar. He had to surrender full time status at age 70, but he did not identify as a retired person; he was able to adopt the role of Professor Emeritus, a title that allows academics to keep a role that feels comfortable. Many retirees are concerned that they will be dismissed or not sought out for suggestions and advice. However, just “being busy” may mean that a retiree is too busy with activities that do not fulfill them or connect with their soul or core self.

Ibarra (2003) challenges some of the conventional wisdom about how work identity shifts occur. The usual method of career planning, in which one does not make a move until one knows where one is going, is not helpful dur- ing the reinvention phase. According to Ibarra, planning is less helpful than doing at this stage. She suggests we experiment and test new aspects of identity in practice, not by looking inward reflectively. Ibarra (2003) believes identity does not represent an inner core or true self but the existence of many selves that are defined partly by one’s history, but just as powerfully by our present and our hopes and fears for the future. Crafting experiments and shifting con- nections are two processes she suggests for trying out new parts of identity to assess what feels authentic and fulfilling. Ibarra believes that our “possible selves” (all we hope or fear to become) lie at the heart of this transition. An adult in this phase can change only when she or he practices enticing alterna- tives that she or he can touch, taste, and feel. Although knowing oneself is important, self-awareness may be the outcome, not the initiator of the search for a new working self. In trying out new activities and professional roles on a small scale prior to taking a completely new path, the adult allows herself or himself to explore a variety of “selves” in action. Experimenting with new options, such as a course in photography, a different house in a new location, a new lifestyle, a new job, and/or volunteer work, is a way of figuring out what one wants to do at this phase of life.

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Although Schlossberg (2004) agrees with Ibarra that for many adults in this phase the “path is marked by trial and error” when there are starts and stops to many paths, she believes a combination of the two approaches is ideal. Adults may start out in a planned, logical fashion by making one move prior to making another. Later, they may discover that they need to move to a more experimental, searching experience in which there may be many fits and starts.

Malinda’s story at the beginning of this chapter clearly demonstrates some of the frustration that an adult in this phase can experience when she or he begins this phase with a planned approach but discovers that the jour- ney of reinvention is often one of fits and starts. At the end of this chap- ter, Marcia also did a lot of preretirement planning and describes how she learned that “retirement is not a destination. It is a journey . . . you see a lot, and sometimes get off at the wrong station and can’t figure out how to get back on track.” Although exploring new activities and lifestyles may lead to frustration when it is not the right fit, it may also lead to gains in self- awareness as to who one is and what is most gratifying and/or meaningful. When one of Marcia’s friends suggested that retirement is not work, Marcia realized that she was working too hard on retirement. When she gave her- self time to experience the anxiety of the unknown, she realized that she could live a more satisfying life by letting go of her plan and embracing the unknown future.

This transition may also be a difficult process because the adult facing reinvention often has young adult children who are trying to match their skills and sense of self with the environment. For young adults, the world is their oyster in terms of time available for identity work, while for older adults, the press of time is heavy. For adults whose work was central to their identity, retirement may trigger depression. The greater commitment one has had to one’s work, the greater the loss when that role disappears. For many adults, this transition may be experienced as a maturational loss and in some sense a disenfranchised loss, as others may not validate the intensity of the loss due to the growth that is observed following this transition.

Some retirees do not experience an identity crisis because they are pleased with their new status. Schlossberg (2004) discusses the case of a couple who were skilled professionals and had devoted decades to their work. They became retirees who wanted to make the most of the time after they retired at ages 55 and 56. They adapted to their new status quickly and easily by decid- ing not to work in their professional fields, either as volunteers or profession- als. They moved to a different part of the country and began traveling to spend more time with their children and many grandchildren, to engage in sports, and a fulfilling social life. They appeared to be content with their retirement, neither retreating nor searching. To this couple, work was not part of their new equation for fulfillment.

Other retirees downsize to an extreme, “choosing a life of travel over a life of tending to possessions” (Wallis, 2014). There are growing numbers of retirees who are selling their homes (including possessions) and buying recre- ational vehicles so that they can travel all over the United States. These retir- ees report that although the purging of possessions was anxiety producing at first, it was ultimately liberating (Wallis, 2014). There is no right or wrong path

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through retirement. Whether working, knitting, singing in a chorus, studying, volunteering, traveling, or all of the above, whatever engages the adult and makes her or him feel satisfied, needed, appreciated, and pleased, that is what is important during this phase (Schlossberg, 2004, 2009). All of the readings at the end of this chapter from “third quarter” adults express their desire to live a life that is meaningful to them and to make a difference—they each want to matter in different ways. Norma (reading at end of chapter) reflects similar feelings as she did not consider paid work to be a part of her retirement experi- ence and now leads a fulfilling life of volunteer work with two organizations that have great meaning for her.

Loss of Routine: Search for Balance

Retirees redefine themselves while losing the routines to which they are accus- tomed. The yearning and searching so typical after other losses also marks this phase of life. The search for a path through this transition marks the “work” of this phase. Balancing part-time work (paid or volunteer), leisure activities, relationships, and time for self is paramount. The loss of reassuring routines and sense of time structure that comes with full-time work can lead an adult to feel somewhat disoriented. The routine of getting up every morning and following one’s work schedule provides a pace to life. Some individuals are more comfortable with less structure, while others feel adrift, not knowing how to spend their time.

As the commitment to work loses its intensity and the structure of the workday disappears, the adult has more time to indulge in his or her passions (Levine, 2005). Many people in the phase between enmeshment in a career and entering total retirement want to pursue their passions. These passions will fill the time that had previously been structured and filled by work. When one is involved in a passionate endeavor, one is lost in time; examples include artists when they are creating, writers when they are writing, musicians when they are playing an instrument or conducting, and tennis players on the court. Corbett (2007) asserts that it is the adult who defines the job that she or he does rather than the job defining the adult. Although Corbett (2007) does not believe there is a right way to move into retirement and reinvention, he does believe that slowing down and reflecting on one’s use of time for fulfilling activities is important.

Loss of routine and a structured sense of time can also lead to new focus on creating more balance in one’s life. The process of reinvention or “pruning one’s life portfolio” (Corbett, 2007) is based on the concept of balance. Balance requires energy for work, for leisure time activities, for relationships, and for time with self. Time with self is what many adults fear most. Prior to or during the retirement transition, most individuals search for new ways to organize their time. The focus of this stage is on making choices about how one wants to spend one’s time. For some adults having this choice is exhilarating, while for others it may be overwhelming. Marcia (reading at the end of chapter) speaks of how energizing choices can be. However, later in her memoir she speaks of being overwhelmed by the many choices and having to learn to say “yes” only to what she really wants.

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Loss of or Change in Work Relationships

Most workplaces provide the adult with an opportunity to interact with many other adults who may be diverse or similar in demographics, interests, and/ or style. The emotional energy provided by workplace relationships cannot be underestimated and these relationships must be grieved. Work provides a community where one’s worth is often recognized and one feels valued in those relationships (Schlossberg, 2004). It is important for the adult who is approaching retirement to examine work relationships and how they will likely change. Schlossberg (2004, 2009) addresses different needs that relation- ships fulfill. The first need is for attachment, a need fulfilled by marriage, part- nerships, or close friends. The second need is for social integration, generally satisfied when adults work together toward a common goal in a workplace or volunteer setting. The third need is the opportunity for nurturance, ful- filled when one cares for (and receives care from) family, children, and friends. These relationships make adults feel as though they matter because the adult feels needed. The fourth need is for reassurance of worth, a need often fulfilled by work (Schlossberg, 2004). For adults whose work provided a source of self- worth, finding other experiences for recognition will likely be important. The fifth need is for a sense of alliance with, or sense of continuity in, relationships with family. Many retirees enjoy spending increased time with adult children and grandchildren in a more relaxed, easy pace. Adults are urged to consider how these relationship needs were met prior to the phase of retirement so that the adult can assess his or her support system and consider the need for changes to it over time.

Loss of Financial Resources

For some adults, retirement brings the opportunity to use the financial resources that they have saved over the course of their adulthood. However, for others it is a time when money becomes very tight, as income from a job is no longer available and retirement planning may not provide resources beyond income from Social Security. In the current economic crisis in the United States, this issue is especially relevant as many private and public workplaces are reducing retirement plan benefits and in some cases ending them. The change from pensions (with a defined amount of money promised each month after retirement) to 401(k)s and other investments (that are supposed to provide annuities and other income in retirement but that are at risk when economic circumstances mean investments can be lost) has left many at risk for financial struggles as they age (Zurlo, 2012).

During this phase, adults often reassess their perspective on money. Adults may begin to accept the fact that money is part of life, functional but no longer a main focus (M. Stone & Stone, 2004). This may be a time for adults to examine their emotional issues about money and to create a financial plan that will allow for balance and more simplicity in life. Even so, for many, it will remain a source of anxiety about whether the resources will hold out long enough to enable a reasonable quality of life.

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TYPICAL AND MATURATIONAL CHANGES/LOSSES

Loss of or Change in One’s Belief System: The Importance of Spiritual Growth

During this phase of life, grappling with the significance of one’s own life as well as other existential questions may lead to reassessment and/or deepening of spirituality. Although the adult has typically lived a long lifespan at retire- ment, she or he still has many years left to live. For some adults, formalized religion becomes an important part of this, while for others, solitude and/ or therapy help deepen one’s sense of self. Schlossberg (2009) believes that retirement presents a unique opportunity for reexamination of life and that the spiritual journey can be very rewarding for those adults who join a spiri- tual community, practice yoga, or meditate. For many, a turn inward involves increased solitude which can be difficult when emerging from a busy life with family and work. Although silence and diminished activity can be frightening, it can also provide an environment where the adult is able to confront issues that she or he may have avoided for years (Trafford, 2004).

Psychospiritual growth often emanates from discomfort, fear, and loss. At retirement, the future beckons but is unknown and living with the unknown becomes necessary. Although adults cannot deny sorrow in their lives, their hope that they will find a meaningful path for their lives helps to keep them centered and satisfied. Part of the spiritual agenda for this phase of life is finding the hope one needs to live fully in the next decade(s) and hope to find one’s way along a new path. Just as with other losses and transitions presented in this text, the opportunity for meaning-making can lead to new growth and development. Many adults are finding that engaging in yoga or some other meditative experience is helpful to them during this phase. Many hospitals and wellness centers have designed courses in meditation for adults.

Changes Within the Marital/Partner Relationship

For most couples, the transition to the retirement years marks a time of major adjustment. For some marriages/partnerships, the retirement experience impacts the relationship in a positive way and for others it has a negative influ- ence. Loretto and Vickerstaff (2013) report that the meaning of retirement dif- fers for men and women. For men, retirement is often perceived as a reward and time for making up the time they had lost with their family during their work life. For women, retirement was perceived freedom from the stress of combining work and domestic responsibilities (Loretto & Vickerstaff, 2013).

For the majority of men, work has been continuous. In contrast, for many women, work histories are discontinuous because they have moved in and out of the workforce more frequently due to family responsibilities. It is the authors’ belief that when women have not been in the workforce, they have been more able to assess their interests in leisure time activities and may also have built more lifelong friendships due to rearing children and having opportunities to build relationships with other mothers. In some ways, this could give women an advantage in the reinvention process

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as they may feel more comfortable coping with the time at home, as well as have experience with having involvement with community and/or reli- gious activities.

Conflicts can emerge around turf issues if both partners are at home at the same time. Anna (2014) reported that many women secretly objected to having someone around the house all day, sharing space that they considered to be more of their own. Other women felt irritated by questions about where they were going whenever they went out of the home. Negotiation between spouses and partners is a critical task of marriage. Sometimes this negotia- tion might result in each partner discovering a part-time job or a volunteer experience that will remove them from the home for part of the week. For oth- ers, carving out physical space that belongs to each partner provides a solu- tion. For others, relationships bloomed amid retirement changes. For couples who have worked different shifts most of their married life, new excitement about being together more frequently can result in a positive adjustment to retirement. For most couples, however, it is a combination of both positive and negative experiences that comprise this transition. If relationships are to survive during this adjustment phase, flexibility and compromise on the part of both partners are essential. Finding a new balance of togetherness and personal space is critical for growth during this period. Although Bill’s wife (reading at the end of chapter) was worried about his retiring and being around the house all of the time, Bill quickly found other opportunities (both paid and unpaid) to keep himself challenged and working with colleagues he enjoyed.

Another issue that emerges for couples during this phase is being out of sync with regard to the retirement cycle. Conflict may arise when a (younger) woman is ramping up her career at a time when her spouse wants more time for travel and leisure time activities. Other conflicts arise when one partner is busy with participation on boards and committees and is irritated by the partner who stays at home and is content to watch TV. The increasing num- ber of women involved in the workplace over a longer period of time may impact this. Increasingly, a partner or spouse may wish to retire early, but have a partner or spouse of a similar age who (for varying reasons) may want to continue to build and nurture his or her career well into their 60s and 70s. This phenomenon may increase marital conflicts over work/retirement issues. Bill (reading at end of chapter) and his wife worked to find activi- ties they would enjoy together, including travel and participating in a local lifelong learning center where they take courses and day trips with other retirees. Universities are catering to the needs of boomers who are looking for lifelong learning opportunities and the chance to maintain activity in a community (Freedman, 2014). Universities and community colleges across the country are designing lifelong learning centers for adults at low costs (Freedman, 2014).

Even so, there are indications that most couples find this period of being out of step with one another to be manageable. When partners support one another’s goals, activities, and interests, they can find new respect for one another and the strength of their relationship. Negotiation and open commu- nication of hopes and fears seem to be keys in navigating a time of uncertainty for both partners.

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Changes in Relationships With Friends

Friends are important throughout life but become especially precious in the third quarter of life (Trafford, 2004). During middle adulthood, adults are usually too preoccupied with raising children, working on (or out of) a mar- riage or partnership, and working to pursue friendships. Although most adults made friends wherever they were living, time was generally scarce for intimate friendships. Friends who lived at a distance or who were from an earlier stage in life tended to drift. During the third quarter of life, the adult has more leisure time available to cultivate relationships with friends—either with or without a spouse/partner. Research has documented the importance of friendship to health, mental health, and longevity (Levine, 2005; Trafford, 2004). During the third quarter of life, when the adult becomes more vulner- able to loss due to death of one’s spouse/partner and parents, and/or devel- opment of a chronic or life-threatening illness, close friendships can provide a buffer to stress and pain. During this stage of life, friends can become a substi- tute for family who may be slowly disappearing.

For adults whose workplace provided their friendship network, there must be a critical readjustment. Although an adult can stay socially involved with some friends from work, it is not easy to stay connected with friends who must still work. Deepening friendships or developing new friendships outside the workplace becomes increasingly important, as these relationships can often substitute for colleagues (Schlossberg, 2004, 2009). There are many ways that adults can expand their friendship network—through travel groups, educational groups, retirement communities, leisure time pursuits, and volun- teer activities.

This may be a time when friendships are important but do not go well and the adult can experience emotional pain which can be reminiscent of ado- lescence (Schlossberg, 2004). Some adults find that they are not part of a social group to which they aspire and suffer feelings of loss and even shame. Others may recognize differing needs and move on to other activities that can offer new friendship possibilities. Reinvention can be a rocky road which can dis- rupt relationships with family and friends. It is significant that when it comes to reinvention, friends and family may try to push retirees to hold on to older identities and discourage risk taking (Ibarra, 2003). Sometimes colleagues and mentors can also hinder the adult in his or her transition process by discourag- ing movement toward new goals. To make a break with the past, an adult may need to move into new social and work-like situations. It is often strangers who are best able to help the adult who is in the stage of reinvention (Levin, 2005). The adult needs to grieve the loss of friendships that no longer meet certain needs and welcome new relationships which can foster new emotional growth.

Changes in Relationship With One’s Community

During this reinvention stage of life, many adults explore community opportuni- ties. The face of community volunteerism is changing with the baby boomer gen- eration contributing in meaningful ways to society, whether through a part-time

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job or through volunteering. Community organizations are designing volunteer positions which resonate with the needs of this generation seeking to make a difference in the world around them. Some authors believe that we are seeing a new “we generation,” led by the generation inspired by John F. Kennedy to ask what they could do for their country (M. Stone & Stone, 2004, p. 55).

THE PROCESS OF CHANGE: COPING WITH THE TRANSITION PROCESS

Schlossberg (2004) describes three important phases of the retirement process that she encourages adults to pursue. The first phase is “moving out” that involves the task of “letting go of your work role.” The way to move through this phase is to grieve. Some adults choose to deny this grief process as exem- plified by a newly retired director of an organization who decided to stay on at her organization as a volunteer. This client could not let go and tried to “micro- manage the activities of her replacement” (Schlossberg, 2004, p. 23). In order to “move on” workers need to acknowledge any regrets they have about leaving their position and grieve for the relinquished work (Schlossberg, 2004). The adult at this phase of life needs to recognize the loss and express emotions and thoughts about it prior to taking on a new task.

It is significant that the yearning and searching phase of the grief pro- cess described by Bowlby (1998) in his study of widows is documented by Schlossberg (2004) in her work with clients who are working through the second phase of the retirement process, “moving through.” This transitional phase occurs after adults have left their major activity and before they have found something new that absorbs them. It is in this phase that adults search for a new way to organize their lives (Schlossberg, 2004). This can be an uncom- fortable phase because adults are unsure of their path, but Schlossberg advises adults to label this period as “your retirement moratorium” so that one can suspend decisions and allow oneself to explore many options (Schlossberg, 2004, p. 24). Transitions involve time to allow one’s emotions and reactions to shift, occasionally elated and other times depressed. These shifts may be more intense for those for whom more of their roles, relationships, routines, and assumptions are altered. The final stage is called “moving in” and occurs when the adult begins to create a new life by adopting new activities, roles, routines, and relationships (Schlossberg, 2004).

In identifying possible pursuits and activities for this time, Corbett (2007) refers to (a) employment-related options, such as consulting, entrepreneur- ship, and board directorships; (b) community service and giving back options, such as civic and nonprofit organizations, philanthropy, and the international arena; (c) passing on knowledge through coaching, mentoring or advising, teaching, writing, speaking, and continuing education; and (d) other pursuits including involvement in hobbies and avocations, fine arts and performing arts, fitness and sports, real estate and travel. The possibilities are endless for a match between an adult and community work that is generative in nature. One of the gifts of maturity and release from full-time work is an awakened sense of responsibility symbolic of the midlife task of generativity.

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LOSS OF A RETIREMENT/REINVENTION ADULT AS EXPERIENCED BY OTHERS

Adult Children

Most adult children have some expectations of how their parents should live. When adults divorce, remarry, or repartner, adult children have a wide range of reactions, depending upon their own expectations. When expectations and reality do not mesh, conflict can occur. Some adult children whose parents have been widowed have difficulty accepting a newly married parent or one who chooses to cohabitate (Schlossberg, 2004). Other losses for the adult child occur when the parent moves to another part of the country to live a new life- style that feels comfortable for the retired adult. Many adult children do not expect their parents to move far away from them and react with surprise or negativity when this occurs. Conflict can also emerge when parents who are retired move closer to their adult children and disrupt routines that have been established by the adult child who has developed a life that centers around their friends and their own children.

In her interviews with adult children, Schlossberg (2004) found that children viewed their parents’ retirement with trepidation. Adult children expressed worry about the cost of health care consuming their parents’ income and savings. Others felt rejected by their parents’ involvement with retirement activities because parents were not as available on a regular basis. In addition, adults who are in the process of reinvention and very busy with their lives may not be as available to babysit for their grandchildren. Unresolved issues that were in the background when parents were working may come to the foreground when parents retire (Schlossberg, 2004). It may be important for adult children and their parents to have open discussions about mutual expec- tations during and following this transition period.

Parents

During this phase, adults may also be less available to their aging parents for whom life has probably drastically changed. Parents can experience a sense of rejection at this phase as they lived in an era when they, as adult children, probably cared for their aging and/or ill parents. These parents may not understand this new age of reinvention when the adult is engrossed in a major transition, often involving new activities, pursuing their passion, and/or new work. Because parents have not provided a model for adults in this reinven- tion phase, there may be a sense of disconnection between the generations. Parents of adults in this phase were among the cohort for whom retirement meant just that—leaving more time and energy for family. The older parents may feel bereft as the adult is expending energy toward new endeavors and often ignoring them. Again, discussions of expectations as well as hopes and fears for this time will benefit both parties as they refrain from having unreal- istic expectations.

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READINGS

Retirement

William P. Miller

William P. Miller retired in 2006 after 43 years of working in government, academia, and the nonprofit world. He earned a BA in Government and an MPA in urban affairs from American University in Washington, DC. During the last 28 years of his career, he served as either executive director or CEO of three nonprofit organizations. Since retir- ing, Mr. Miller has engaged in a variety of activities, including consulting, volunteering, travel, and lifelong learning. He is an avid photographer and an avowed “news junkie.” He is also a dedicated procrastinator so that “there is always something more to do.”

Some people can’t afford to retire. Others don’t retire because the world of work is their life and they have a great fear of leaving a big hole in their life, both in terms of time and relationships. Some have been so consumed with work that they have no outside interests. Still others retire for health reasons, or because a job is phased out and they have no choice.

None of those circumstances applied to me. I was a 67-year-old man who loved my job and was at the height of my career. But, after many years of reward- ing nonprofit leadership jobs requiring long hours of work and limited vacation times, I was ready for a different lifestyle that included extensive travel, time for reading fiction (instead of newspapers, reports, and memos), and time with my wife and geographically spread out family. My wife, who saw how involved I was in my work, was in a near panic about my retiring and being around the house all the time. She now admits, 6 years later, that she didn’t need to worry.

It was emotionally difficult to give up my job because it was such a large part of me. Nearly all my friends and acquaintances were work related. How would I separate from work and still maintain important friendships? Also, much of my feeling of self-worth was wrapped up in my work-related activities. I determined from the beginning that I would stay involved in a number of my favorite activi- ties on a volunteer basis, while maintaining more flexibility in my schedule.

After retiring at the end of 2006, the next 9 months were spent being care free and traveling. During the late spring, we traveled to visit my sister in Switzerland and then she joined us for 2 weeks in Rome where I had lived for 4 years as a teenager. We visited all the historic sites that tourists visit, but we also located the three addresses where I had lived, visited my old school, and met two of my mother’s former coworkers who were approaching 90 years of age. It was my first return to Rome in 30 years and I felt right at home. After this 5-week trip to Switzerland and Rome, we stayed at home for a few weeks before heading to Steamboat Springs, Colorado for a month where both our son and daughter had settled. The Colorado Rockies are beautiful in the summer time and we did lots of local exploration, sometimes with our son and daugh- ter-in-law, sometimes with our daughter, son-in-law and two granddaughters, and sometimes on our own. It was the beginning of many wonderful visits.

Back in Baltimore that first fall, I began looking for a small number of activities that would keep me involved with my friends and passions, but not

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impinge on travel time. While I was working, I had turned down efforts to get me involved with our homeowners association. I had agreed that after retiring, I would take my turn. I quickly ended up as president and am now serving my sixth, and last year, in that position. I had also agreed to continue my involve- ment with Baltimore Experience Corps, an AmeriCorps program for older adults working with elementary school children. I had helped start the program in my agency and by the time I retired, it had grown to three hundred volunteers, serv- ing in 20 public schools. To keep it growing, we determined to separate it into a new organization and I agreed to be an officer on the new board of directors. This ended up being a major commitment for the next 4 years.

Keeping in contact with my former colleagues was a priority for me because many of them were real friends. I jumped at the chance to help a new organization focused on organizing a network of community development and housing agencies in Maryland. Using my contacts, I began reaching out to the many agency directors in Baltimore, convincing them to join. One of my recruits became president of the organization. This occurred during a period of serious economic downturn and it was so disheartening to see good, but small organizations simply dry up for lack of funds. With executive directors being stretched to the max, I volunteered to be an advocate for maintaining public funding and we had some successes. As I got more removed from my formal workdays, I decided that my role in the network should lessen, but I still attend meetings and keep in touch with people.

Our travel schedule continued to fill 2 to 3 months of each year with a mix of foreign and domestic travel, some with various family members and some on our own.

Then, a close friend who still has years to go before retirement convinced me to partner with him on a consulting proposal. We were the successful bidders and for the next 18 months I was deeply engaged in developing a demonstration program to mobilize older people as community volunteers and to expand opportunities for intergenerational and multicultural activ- ities in neighborhoods. This was an assignment that allowed me to bring all my skills and knowledge to bear, but it also offered me flexibility. For instance, my wife and I were able to combine working trips to San Francisco and Arizona with vacation plans. It was also a learning experience for me as I became more aware of the differences between generations and various approaches to bridging the gaps.

At this point, my wife was looking for something more structured in her life because our travel schedule played havoc with her chorus, summer musi- cal activities, and part-time clinical social work practice. She discovered the Renaissance Institute, a lifelong learning program near our home. She joined eagerly, and I agreed to try it out. Five years later, we are both hooked. Now, dur- ing the fall and spring semesters, our Tuesdays and Thursdays are filled with a variety of interesting classes. I am nearly finished writing a memoir after several years in a writing class. We have learned about Islam, modern art, astronomy, bridge, and sharpened up on current events and computer skills. Sometimes I take a course and occasionally I teach one. During the summer and winter breaks, we join friends for pot lucks and visits to museums, schools, factories, and other interesting places. There is no pressure; when our schedule involves travel or just hanging out at the community swimming pool, that is what we do.

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Travel has continued to be an important part of our lives and some trips have been prioritized while we are physically able. We prefer to travel on our own, because we like a more leisurely pace than is provided on organized tours. Just for fun, I created a bucket list and we have done amazingly well with it. For three summers, we took our granddaughters camping in various national parks in the American West. Now, the camping has been replaced by lodging with indoor plumbing and beds, but we still spend about a month with the two girls in some mix of activities—as long as they are willing.

While we are not really caught in the “sandwich generation,” my mother- in-law is in her early 90s and is still living in her own house and driving. Now, there are plans for her to move to an independent living apartment while she is in good health. My wife has the primary involvement for this, but the multiple out-of-town trips obviously have an effect on our travel time and budget and impact how far in advance we want to be locked into nonrefundable overseas travel plans.

Gradually, I am finding that I am more and more comfortable staying at home, but we too are getting older and need to think about the next phase of our lives. We enjoy immensely living in a multigenerational community, but our house can’t be adapted to one-floor living. So, we are now facing a deci- sion in the next several years; do we move directly to a 55+ community with a range of services, or do we take an interim step and move to a one-floor apartment with a mix of age groups? We have friends who have done both and there seems to be no consensus on what works best. My wife and I are both clear that we do not want to move away from our familiar surroundings and friends, starting fresh in some other community.

As the aging process has continued, I have been forced to make some adjust- ments to my schedule; it has been a gradual process. When I retired, I took one pill daily for my asthma. Now, I am up to four pills daily and doing exercises to maintain my balance and to reduce pain in my shoulder muscles. I sleep a little longer at night and truly enjoy a short afternoon nap. The physical limitations annoy me, but I am beginning to accept them and adjust my schedule accord- ingly. I know that I am really lucky to be so healthy compared to many others.

The move from work to retirement went well. As a person who spent much of my life as a professional planner, I place a great deal of faith in plan- ning ahead and it paid off. Our financial plan met expectations, our travel plans exceeded expectations, and I can truly say that I am happy with this stage of my life. The experience of the first 7 years of retirement gives me a rea- sonable degree of confidence that the next phase of our lives will also go well, recognizing that there are many things beyond our control and unforeseen events can occur. With so many interests and things I still want to do, I am not at risk of getting bored any time soon.

Reflections on Retirement—1 Year Out

Marcia Krayton Goldstein

Marcia Krayton Goldstein received her BS in social work from the University of Wisconsin and her MSW from Fordham University. Her career has included work in

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foster care and adoption and a mental health clinic as a liaison/advocate for families as they navigated the public school system to meet the needs of their children. This led to working as a school social worker, first in New York, and then in Pennsylvania. The work involved interacting individually and in groups with students, parents, faculty, and administration. In addition to working on behalf of students with learning, emo- tional, and behavioral needs, she was part of a small team that started an emotionally supportive alternative program for regular education students. School-Based Teams referred students who were at risk and might not reach their potential without addi- tional support, due to transitional life circumstances. When she retired after 28 years in her school district, the alternative program was in its 19th year and going strong. Retirement has opened new doors; providing opportunities to use her skill set in new and unexpected ways. She is an executive board member of the A Better Chance pro- gram, a residential program for academically talented, economically disadvantaged, minority youth. She is also involved with activities and committees for The Transition Network for Women, an organization for women 50 and forward who are navigating their next steps. In addition, she enjoys her children and grandchildren, travels, and does yoga to keep it all in balance.

As a social worker with a lengthy career, I gave a lot of thought to when and how to “do” retirement. All the messages I had incorporated into my unconscious sense of how one successfully functions in life were considered. I martialed them all, set to handle this life transition with competence. Plan ahead. Be prepared. Stay calm and carry on. . . . One year postretirement this is my reflection.

The first question was when. Twenty-eight years earlier, I was hired by someone in my school district with creativity and insight. He saw how social workers in a school setting could have an impact by playing a central role for those students whose psycho-social issues impacted their ability to suc- cessfully function academically. As the years passed and the administration changed, it was clear that some people were not comfortable with the broad reaching aspects the role had developed. It became more difficult to get people to think outside the box and the strain of trying to do the right thing became more intense. But, it was hard to imagine not doing what I knew I did well.

I took a half year sabbatical to “plan ahead.” Without the structure of work, I pushed myself out of my comfort zone. I traveled and tutored in a foreign coun- try, I joined the board of a small nonprofit, I was familiar with through my work in the schools, I took a class, and I joined a new group for women beginning the transition into the next phase of life. The months flew by with lots of new experi- ences but with the knowledge I was returning to the known world of work.

When I returned, it was quickly clear that the atmosphere had become more toxic and the stress I had left several months earlier intensified. Key supporters had been reassigned or retired and I no longer felt the respect and response I still got from students and their families. I developed a 2 to 3 year plan toward retire- ment so that I could see the light at the end of the tunnel. I had to consider pen- sion and health insurance issues that impacted both my spouse and me. During that time I kept active with my postretirement activities. I was juggling the full- time job and increasing responsibilities in the two organizations I felt would be a central focus in my retirement. The combination sapped energy emotionally, mentally, and physically. “Being prepared” was taking its toll as I staggered to

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the finish line. Everyone asked what I would do in retirement and my answer always was “The first thing I will do is take care of myself.”

The first 2 months of retirement were summer, a time I traditionally used for unwinding every year. I read books, spent time at the beach, did yoga, saw friends, began to declutter my house, and took on some new tasks with the organizations with which I was connected. As September rolled around I began to feel the reality set in. I was free. I felt the layers of stress and anxiety slip away. A friend I hadn’t seen for several months wrote to me after seeing me. “I was aware more than ever, of the warm heartfelt energy you exude.” It made me realize that part of retirement was going to be refinding some of that energy that had been sapped by the stressors of work and life. Having choices and time seemed like the first step to keeping my promise to take care of myself.

But, I learned retirement is not a destination. It is a journey. And as with any journey you see a lot, learn a lot, and sometimes get off at the wrong sta- tion and can’t figure out how to get back on track. And that is where staying calm and carrying on really came in handy.

Time has a new meaning. There was a structure to work that no longer exists. I live by lists and my I-calendar. Some of the details of the lists are comical and any one page looks so random. But, life is more random and less focused because that central core of career is gone. Some days get over booked; some get double booked, and sometimes it feels like there are too many open spots. And some tasks that seem so important begin to become oppressive. An idea like moving from the too-big house you raised your family in begins to morph into a huge project and lots more lists. Looking for a new place, figur- ing what you and your spouse each need, cleaning out the clutter of 30 years in a home, parting with all those memories. And that’s when you need to reas- sess and realize you are no longer on a schedule. You can slow down and take the steps when you and your partner feel ready.

There are so many choices. People in the organizations you care about recognize that there is someone new to ask to chair a committee or plan a program. I have learned the hard way to say yes only to what I really want to try and to say no when I don’t—even when they keep pressuring. There are things to do that are rewarding, things that are difficult, things that are fun, and things that feel downright decadent. There is the inner voice that judges the choices and which sometimes needs some reprogramming to say it is okay to do or not do something. But, it is all about seeking the balance. And that remains a work in progress a year later. And I sense it will remain that way. Constantly sorting and resorting priorities, as life needs rebalancing.

It takes work to accept that I do not have as much control as I had in my career. Every day at work I instinctively knew what was needed, and what had to be done and I approached it confidently. I would work on something from beginning to end. I knew the obstacles and how to finesse them. Now, I am often part of a committee and don’t own the outcome, or find myself working on something I have never done before. When it is not familiar I have to recognize when I am out of my comfort zone and be accepting of the learning curve. Now, the obstacles can be unpredictable and the solutions, at times, surprising.

For so many years I could measure my success through the trials and tribu- lations at work, confident I was making a difference. There is a clean slate now. There is no formula to apply to find the right balance of service, learning, creativity,

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and fun. It is important to keep people in your life that will give you feedback when asked. And it is important to ask. An old friend listened to my explanation of what I was doing and she said, “You know it is retirement, not work?” Her feedback made me realize I was working a little too hard at retirement.

On one adventure in a new city I woke up and felt anxious about the day ahead and wrote these words.

Difficult moments. Where am I This is supposed to be fun But I feel alone and adrift I did not prepare myself to not feel lost I usually plan—this time I didn’t I am paying the price.

I gave myself a little time to feel the anxiety. And then I did a Google search that gave me some ideas. I made a plan, found a map, pushed myself out the door, and had a fabulous day. I expect there will be many doors to get through in retirement. Some I will choose and some I will unexpectedly encounter. I look forward to the challenge. I will stay calm and carry on as I navigate this exciting and challenging time of life.

Jean Haskell’s Story

Jean Haskell

Jean Haskell has been aging since the day after she was born; however, it is only recently that she looks into the mirror and wonders who that old woman can be. Jean grew up in Philadelphia, attended public schools, and the University of Pennsylvania, where she majored in psychology and English. Much later in her life, she received master’s and doctorate degrees in educational psychology from Temple University. Jean has been a secretary, a publicity writer, an elementary school teacher, an educa- tional consultant, a manager, program developer, career and organizational develop- ment consultant, a facilitator, a married mom, a single mom, a student and teacher of improvisational theater, an avid theater goer, a peace activist, and a grandmother. She  is also a trained ballroom dancer, an exercise addict, and a newspaper junkie, and loves to travel. Although she is in excellent health, Jean finds aging a challenge because, she says, “my body plays tricks on me—some days everything is just fine, and other days I wish I could turn it in for a new one.” She looks forward to the next chapters of her life and what new ventures they will bring.

I never really “retired” from a position. I had been managing my own consult- ing business, intermittently with full- and part-time jobs, for about 20 years. About 5 years ago, when I was consulting full time, the business changed, and the economy changed, and it became harder and harder to find work. The contract I had with one major organizational client came to an end and, as the work with smaller clients began to wind down, I realized that I was no longer interested in doing the heavy marketing that consulting required. Thus, I became a nonworking person, however, I always know, even now, that

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if a project comes along that I want to do, I will certainly take it. I really love the work. If I think about what was going on inside me, at that point, a lot of it had to do with energy. I realized that I no longer had the “aggressive” energy needed to sell consulting, and I began to get more involved in other activities. I had been a tour guide for the Mural Arts Program, so began to do more of that. I had long been a member of an improvisational theater group, and a colleague suggested that I teach a class at what is now “OLLI,” The Osher Lifelong Learning Institute, or Temple’s School for Older People. I also knew that I wanted to do some traveling, so I asked one of my fellow improv actors to co-teach with me so that we could each handle the class alone if needed. That has been a very successful and satisfying endeavor and this is our 4th or 5th year of teaching. I am also a student in some classes at OLLI.

A major thread through all of my paid work has been social change—as a teacher, as a trainer and facilitator, as an organizational consultant, even as a career coach, my focus has always been on how to make things better for the individual or the group of people who work in a particular environment. And, on a broader scale, how to bring peace to the world.

My “change agent” focus grew out of what had earlier become a pas- sionate purpose, my anti-war activities in the Vietnam War era. I moved to Washington, DC in 1962, had a baby, and made a new friend who introduced me to Women Strike for Peace (WSP), an active anti-war group of women who were, among other things at that time, protesting the nuclear testing program that was putting Strontium-90 into the grass fields where cows grazed. Thus, the milk that the cows produced—and which I drank so that I could nurse my baby—was laced with Strontium-90. I was outraged and this marked my first entry into political/social activism. I became very active with WSP, which expanded to include civil rights, women’s rights, other progressive causes. I knew that I wanted to keep this passionate purpose in my life and work.

Later on, when it came time to earn a living, go to graduate school, and so forth, I was overjoyed when I found a profession that would enable me put my social conscience to work. By the same token, when I was no longer working, I looked for outlets for that interest and in 2005, when this country was mired in George Bush’s unnecessary and idiotic war in Iraq, I did volunteer work with the “Iraq Veterans Against the War,” and a year later helped found the Granny Peace Brigade Philadelphia, and have been a very active member ever since. This cer- tainly fills my passion for political/social activism, particularly anti-war activities.

Do I feel a sense of loss at not having the consulting work? Yes, for, as said earlier, I love the work; and no, for I feel enriched by my many current activi- ties, and doubt I would have the energy for full-time work anymore. I do look for ways to earn extra money and sometimes work as a standardized patient at Philadelphia area medical schools.

In general, I am quite satisfied with the various projects with which I am involved—I love teaching improv theater and staged reading at OLLI; I still enjoy doing mural tours, and I feel most passionate about the work I do with the Granny Peace Brigade Philadelphia, for it feeds my need to take some action about the state of the world today, and it keeps me in close touch with a wonderful group of women who feel as strongly as do I about war and peace and social justice.

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The most difficult issue that I face at this age is being this age (82 next month).

Almost every day I find it hard to believe that I am this age and that I am viewed by most of the outside world as an old lady, for I certainly do not feel like an old lady. Fortunately, I am in excellent health and am lucky enough to have sufficient money so that I can afford to do most of the things I like to do, and resourceful enough to find things to do that don’t cost a whole lot of money. In addition, I am fortunate to have met a man with whom I can share intimate moments and lots of laughs. The definitive book on how to get older “successfully” has not yet been written, so I guess most of us have to make sure we eat right, take care of our teeth, get lots of exercise, find interesting things to do and good books to read, and have some fun. And yet there is always a part of me that looks for more and wonders, “What’s next?”

Retirement Is Not a Dirty Word

Norma Bolden

Norma grew up in North Carolina. She graduated from Ohio State University and earned an MEd at Temple University. Prior to retiring she was a counselor in a family planning clinic, a private girl’s school, and director of counseling at a junior college. She lives with her husband, Stephen, in Newtown Square, Pennsylvania, and loves hanging out with her four grandchildren.

When I decided to stop working (I had a hard time saying I was retiring), it was because the work wasn’t fun anymore. Changes had occurred at the college and the atmosphere was different. I had loved my job as a college counselor. The students were challenging, energetic, and inspiring. I enjoyed my cowork- ers, and the college was a 10 minute drive from my home. During the over 10 years I was at Harcum College, a 2-year career and academic institution in the Philadelphia suburbs, I had worked with first generation to college students, students with learning differences, traditional and nontraditional aged stu- dents, and helped them with academic challenges, personal and relationship issues, supported them when they failed and celebrated their successes. As my parents aged and passed away, this position, working with young people, became all the more life affirming. And then in January 2000, I decided I had enough and resigned. Of course I had been weighing the decision for several months, but the dead of winter seemed like a good time to stop!

I did contemplate looking for another position, but I didn’t have the inter- est. I wanted to explore new experiences that would give me freedom to choose new options and wouldn’t restrict my time. I began training for a 3-day Race for the Cure breast cancer walk that was scheduled for the fall; we had a new grand- son on the way, and there were classes that interested me. I didn’t feel scared exactly about not working, but I knew I would have to discipline myself. Work had always given me a structure. Now, I had to structure my own day. Meeting friends for lunch might be fun for a while, but I couldn’t make it my life. In fact, I set up a rule for myself that read, only two lunches out per week!

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I had interests to pursue. I am connected to my synagogue and enjoy vol- unteering and studying there. The previous summer I had learned to chant torah and wanted to perfect that skill. I had always wanted to take a pottery class and learn to throw on the wheel. And friends had become snowbirds so there were places to visit. My husband is still a long way from retiring so some of this travel would be alone. Surely between training for the walk, visiting grandchildren, and pursuing new interests, I could structure my weeks. And I did.

I think the most fascinating part of all this is how each class I took, new person I met, and my own investigation and desire to be open to new experi- ences, led me to what I am involved in today. The process helped me learn about myself. First, I discovered that although I saw myself as artistic and creative, I was not a potter. After two semesters of classes with a wonderfully talented instructor and skilled classmates, I realized that throwing clay was not for me. No one, not even my 5-year-old granddaughter, wanted to eat out of my lopsided bowls.

But, I began to find new ways. I saw an ad in the paper about the need for docents at the National Museum of American Jewish History and enrolled in the training for the position. I met the volunteers who had a more traditional Jewish background than I, strong women who like myself had been in education before becoming docents. And I learned so much about American Jewish History. Although I stopped volunteering after a few years because we had moved fur- ther from the city, I very soon became involved in another area of Jewish study. For the past 8 years, I have volunteered at the Gratz College Holocaust Archives where we prepare Holocaust survivor audio tapes that will be sent to museums in Israel and Washington, DC. About half the men and women I work with are themselves survivors. This project has touched my soul in ways that I’m not sure I even understand. The voices I listen to on these tapes are preserved for future generations. Their stories are painful and tragic yet give hope for a better world. And I am a part of that. It is very gratifying.

I increased my time and involvement at my local synagogue by serv- ing on the Sisterhood executive committee, attending Torah study and a short story discussion, and singing in the women’s choir. Through a choir member I learned of a college choir that practiced weekly and performed once a semes- ter. This has been such a treat as not only is the conductor a true professional and music scholar, but the chorus is a wonderful blend of college students and community members and the music is challenging.

From another choir member I learned of a voice teacher whom I have been studying with now for several years. The teacher is supportive and encourag- ing. As a result of the private lessons, I have joined with another choir member and her husband, an amateur pianist, to perform at local senior citizen’s and assisted living facilities. We have a chance to perform our solos and duets and lead the groups in sing-a-longs. When I began singing in the temple choir, I never imagined that it would lead to going out on “gigs.” This almost fills my fantasy of being a night club singer.

Another aspect of my life that has fulfilled me is being a part of the Meals on Wheels services in our area. I began as a volunteer, delivering meals to homebound folks. Presently, I am serving as the President of the Board as well. Often this community service can be depressing as I am visiting some people who live in poor conditions. I have become aware of how any of us are a step

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away from poverty and loneliness. On the other hand, if one wants instant gratification, delivering a meal to a lonely but appreciative person, will do it.

These projects and activities that at present have meaning to me did not just appear on my doorstep. During these past several years of not working for a paycheck, I have tried a smorgasbord of activities. I have tutored children in the inner city, served as a docent, played in a weekly bridge game, attended a monthly book discussion. Right now, I believe that the projects I have chosen give me joy and I hope benefit others.

Just as in other stages of our lives, we need others to support us. So I feel in the retirement years, we don’t do this alone. Certainly my husband who encour- aged me to follow my retirement bliss is a main reason for my being happy with what I do now. And he gets a kick out of seeing me perform. Friends also have been encouraging, not only with suggestions but also serving as a sounding board. Once when I was discussing an activity I felt guilty about giving up with a close friend, she reminded me that I never talked about that activity with pas- sion, the way I did with my music and Holocaust project. I realized it was okay to give it up. So I learned that another advantage of saying you’re retired is that you can spend your time doing what you love, not what you have to do.

SUMMARY

One of the themes of this life phase is “letting go of what doesn’t really mat- ter, experimenting with what seems to work, and getting on with whatever is next” (Levine, 2005, p. 150). Malinda (vignette at the beginning of this chapter) is struggling with letting go and grieving the loss of her academic position; yet, she will be able to forge ahead and create a new life for herself. Malinda’s experi- ence is similar to that of Carla (reading in our first edition) for whom retirement brought with it the loss of social position, interaction with colleagues, and a sense of contributing to society. Prior to reinventing her life, Carla had to grieve the loss of the aspects of her work life that were meaningful to her. Malinda is still in the “grief” phase, exacerbated by multiple transitions in her life.

Another theme that emerges during this life phase is that of readjusting the work, family, and self-balance. This phase is marked by a search for what is most meaningful for the adult as she or he explores and experiments with new activities. All of the cases presented at the end of this chapter demonstrate the importance of rebalancing work, family, and time for self. Bill wanted more time to travel time with family; Marcia enjoys her children, grandchildren, travels, volunteers in meaningful activities and “does yoga to keep it all in balance”; Jean combines teaching in a Lifelong Learning Institute with her involvement in social change movements; and Norma volunteers at her syn- agogue, Meals on Wheels, and the Gratz College Holocaust Archives. These individuals all navigated the transitions of activities, self-worth, and interests that are allowing them to enjoy the time after full-time work ends.

For retiring adults, the loss of a professional/work identity and redefin- ing the self is less difficult when regrets are reframed as lessons and adults

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have permission to change at their own pace, discover their passions, and have an opportunity to share this process with others. Some believe that the solution for uncertainty is planning and preparation (LPN, 2013). In contrast, Ibarra (2003) believes that trying out new activities and “selves,” taking action and experimenting with new options helps retirees to discover themselves. Schlossberg (2009) believes that new activities and “selves” can be combined and recommends constructing a personal narrative to identify passions, and what matters, to modify ambition and practice resilience.

None of the adults who shared their stories of reinvention in this chapter “had” to retire—for each one of them it was a choice they made because they either wanted more balance in their lives or no longer had the energy for a full-time position. For adults who do not choose to retire but are forced out of positions, depression, and anxiety due to being confronted with such an unan- ticipated loss may overpower the opportunity to enjoy exploring reinvention in retirement.

Practitioners who are working with adults in this phase of life need to help clients recognize their strengths and help them “let go” of some aspects of their lives as they struggle to build a bridge to a new life that is meaningful. Practitioners need to help adults in the third quarter of their lives to grieve the losses of their former work attachments while they are moving forward to forming new lives. Just as during any maturational change or transition, the positive, forward looking approach receives more attention, as both the retiree and friends and family want to focus on the positive aspects of the transition, ignoring the need to grieve the losses involved in giving up one’s long-established work identity.

The other concept that is critical to reinvention is that of meaning- making or actualizing one’s life. This brings the concept of generativity to the foreground because adults need to think about the purpose and meaning of what they are doing. The concept of growth and transition throughout the life cycle—even through years that may be laden with chronic illness and pain— is critical to sustaining one’s life. Caregivers, counselors, social workers, and educators need to heed this message and encourage adults struggling with this passage to embrace this premise of growth.

DISCUSSION QUESTIONS

1. How is the meaning of retirement/reinvention different for women than men and how might this change as women represent greater numbers in the workforce? What difficulties can arise in a marriage or partnership as a result of these differences?

2. How might you intervene to help Malinda (vignette at beginning of the chapter) who is struggling to find her path?

3. How can the journey of retirement/reinvention affect the lives of adult chil- dren and their grandparents? How might you work with families who may be struggling with this issue?

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TEN

Older Adults

Marilyn was 75 when her husband Warren’s Parkinson’s disease worsened. Marilyn had spent the last 5 years as his caregiver, attending medical appointments, and watching him carefully so that he did not fall and injure himself. Marilyn and Warren had traveled extensively before his diagnosis and loved the cultural opportu- nities available to them in a neighboring city. They enjoyed films and spending time with their three grandchildren who lived within a few hours of their home. They had been married for over 50 years when Warren died from Parkinson’s and Marilyn was distraught. Although she had developed many close relationships with women friends who lived nearby, she and Warren had spent weekends and meals together and she missed him. Marilyn and Warren had continued to share a very satisfactory sexual life together, and after several months of widowhood Marilyn felt alone and depressed. At first, her two adult children and friends were constantly at the house bringing food and conversation. However, the nights were difficult, as she had to learn to sleep without her partner of 50 years.

After 3 months, Marilyn realized that she would have to dine by herself unless she developed a plan with a friend or with family. Her adult children and their children had busy lives and were attentive by telephone but could not fill the void. Marilyn was also beginning to experience arthritis pain in both her hips and knees. Her physician suggested physical therapy and she also decided to join a nearby health club so that she could swim indoors on a regular basis. She was told she had devel- oped high blood pressure and seemed depressed and her doctor suggested that she see a therapist. Getting older was becoming more of a “downer” than she had ever expected. And she had no one to talk with at the end of the day or even at lunch— Warren had retired and was home for lunch the last few years, so Marilyn had gotten out of the habit of lunching with friends.

Marilyn called one of her friends who suggested a therapist. The therapist sug- gested that Marilyn maintain a regular schedule and return to the piano lessons that she enjoyed. Once she began playing the piano again and joined a local chorus, her spirits began to rise and getting up in the morning was not so difficult. Marilyn also began to set up more regular luncheon plans with friends. She realized she needed to make travel plans with a group, as she and Warren had loved travel but had given it up when his symptoms worsened. She contacted her travel agent who suggested a group that was going to Italy. Marilyn’s life was starting to improve: she still missed Warren very much, physically and emotionally, but life seemed worth living again, and for that she was grateful.

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OBJECTIVES

After reading this chapter the reader will be able to:

■ Understand the variety of losses that may occur in older adulthood and how they differ from adult losses in other life phases.

■ Describe how the developmental tasks of older adulthood influence how an older adult might cope with grief and loss.

■ Explain how theories of loss/grief/bereavement influence practice with older adults.

DEVELOPMENTAL CRISIS: INTEGRITY VERSUS DESPAIR

In this text, older adults are defined as those 70 and older. Although some authors separate early and later older adulthood, we focus on the years after midlife’s focus on generativity, grappling with mortality, and work life end- ings have been accomplished. As noted in Chapter 9, reinvention and retire- ment span the years between late midlife and early older adulthood. Older adults typically have completed the transition from a focus on work life to a focus on relationships and health.

Recently, Emanuel (2014) provoked controversy with an essay entitled “Why I hope to die at 75.” His premise is that older adults live longer by enduring greater illness rather than longer, healthier lives. He prefers to die while still vigorous. Soon after, the inimitable Sachs (2015), at 81, shared how his recent terminal cancer diagnosis gave him “sudden clear focus and per- spective,” leaving him unwilling to put time into inessential activities and focused on the relationships and activities that give him pleasure. These two men exemplify different approaches to the fact that older adults are confronted with opportunities for growth and development as well as many stressors, risks, and forces (biological, psychological, and social) that can disrupt growth. Older adults confront more physical losses (health) and social stressors (losses of friends, homes, family members, etc.) than individuals in other life phases. Even so, research shows that older adults most often feel a strong sense of well-being (Carstensen, 2015). It seems that when older adults can focus on the relationships that are important to them and continue to find purpose in life, their sense of well-being is maintained through the challenges of aging.

Biological Development

Older adulthood brings obvious physical changes including sensory losses in hearing, eyesight, sense of smell and taste, and joint degeneration. Chronic diseases, such as heart disease, cancer, osteoarthritis, strokes, and diabetes, are all common in older adulthood. Cognitive changes are com- mon: reaction time, short-term memory, and verbal processing all show some decline, yet  for individuals who have remained physically and cogni- tively active, these declines are less pronounced and brain plasticity remains (Erickson,  Gildengers,  &  Butters, 2013). Memory issues tend to relate more

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to recall of information than to recognition of previously known information (Hooyman & Kiyak, 2008). Slowing the pace of the delivery of new informa- tion, as well as connecting it to relevant and familiar material assists older adult learning (Hooyman & Kiyak, 2008). Although the brains of older adults tend to shrink, they remain able to learn with appropriate supports (Erickson et al., 2013); old dogs can learn new tricks. Despite cognitive losses among older adults, neurobiology and brain imaging techniques have demonstrated that learning and brain development are aided through exposure to new expe- riences and forming new relationships, including the therapeutic relationship (Siegel, 2010a).

Psychological Development

The major developmental task of later adulthood is accepting one’s life to achieve a sense of integrity or wholeness about oneself rather than face despair (Erikson, 1980). This acceptance comes from introspection and life review (LR) during which the older adult examines both positive accomplishments and negative experiences to arrive at a sense of satisfaction about one’s life. Older adults must be able to take pride in various achievements at the same time they examine personal goals and expectations that have not been met. They must be able to incorporate disappointments and areas of personal failure without being overwhelmed by a sense of inadequacy.

This developmental task can also be described as one of maintaining self- esteem in the face of the biopsychosocial challenges of aging. LR work is com- monly used with elders (B. K. Haight & Haight, 2007) and has been shown to enhance autobiographical memory (Williams et al., 2007). LR involves guided discussions that allow the participant to describe varied events in life that may be related chronologically, but often are guided by emotions (“what was a happy memory in your past?”), events (“what do you remember about your wedding day?”), or by relationships (“who was the person who you remember as being most important to your success as a young adult?”). Recent experi- mental studies using a short-term LR intervention (six sessions) with a focus on positive life events have shown promise in decreasing depressive symptoms, enhancing life satisfaction, and promoting the emotional health of older adults (Latorre et al., 2015). Work with older adults is often aided by the use of gentle humor (Lurie & Monahan, 2015) and openness to reflecting on memories.

Developing a Point of View About Death

One psychological development characteristic of older adulthood is the pro- cess of developing a viewpoint about death. Older adults lose friends, spouses, homes, and their own health and need to grieve these losses and try to make some meaning about them to formulate their own viewpoint about death, including a perspective about their own mortality.

Dying in Western society is primarily associated with old age and death is a predictable function of age. Most deaths in old age occur as a result of chronic disease, due to improved medical technology, early detection, and diagnosis. People with chronic illnesses are maintained sometimes in very debilitated states and many older adults are not “achieving a peaceful death”

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because of the professional and societal “ambivalence about whether to fight or accept death” (Hooyman & Kiyak, 2008, p. 540). Gawande (2014, p. 232) puts it differently in his recent book Being Mortal; the conflict is “between one’s fears and one’s hopes” and decisions about trade-offs one is willing to make to stay alive become a key to defining what quality of life is hoped for or feared.

Multiple factors influence attitudes and fears about death and dying, such as age, gender, and previous experiences with the death of loved ones. There is general agreement (Cicirelli, 2002; Corr, Nabe, & Corr, 2006) that older adults fear death less than do younger adults. While older women are more likely to report fear and anxiety about dying, they are less fearful of the unknown than older men. However, as Hooyman and Kiyak (2008) report, this difference may emanate from gender differences in socialization, specifically women’s greater ability to express emotions. The oldest of older adults seem to talk and think more about death and seem less afraid of their own death compared to younger older adults and midlife adults (Hooyman & Kiyak, 2008). However, Cicirelli (2002, 2006) reports that adults over 75 who are aware of their limited lifespan still seem to desire more time. A nearly universal fear, regardless of age, is the pain of dying; this is followed closely by concerns about whether there is an afterlife (Cicirelli, 2006). Psychological health seems predicated on resolving some of these issues during older adulthood.

Some research (Oktay & Walter, 1991) indicates that older adults who have coped with previous loss are better prepared to cope with death. Among hospice volunteers, death anxiety is found to be lower when the volunteer has had more experience of death; the novices felt more death anxiety (Bluck, Dirk, Mackay, & Hux, 2008). In comparing their analysis with others’ findings, Bluck et al. suggest that experiencing others’ deaths within the supportive hospice environment may explain why experienced hospice volunteers felt less death anxiety or avoidance. In explorations of death anxiety (generalized anxiety about death) and fear of dying (fear of the dying process), bereaved Israeli parents were found to have higher levels of fear of dying (particularly true for mothers) than nonbereaved parents, yet their death anxiety levels were about the same (Azaiza, Ron, & Tinsky-Roimi, 2011). Further, there was no significant relationship between religiosity and death or dying anxiety. What people seem to fear most about death is their inability to predict the future and the process of dying—not surprisingly, most are particularly concerned about dying a painful death (Hooyman & Kiyak, 2008).

SOCIAL DEVELOPMENT

There is much variation among older adults and is significant correspon- dence between the well-being of older adults and the richness of the social relationships they maintain. The ability to maintain social relationships often corresponds to older adults’ housing situations and their continued activity (or not) in the community (Greenfield & Russell, 2011). In considering two living arrangements specifically designed to allow older adults to “age in place,” Greenfield, Scharlach, Lehning, and Davitt (2012) found that success- ful programs attend to assuring that older adults have access to civic engage- ment and empowerment activities, opportunities to pursue and build social

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relationships, and coordination and connection to services that support health and other necessary resources. The naturally occurring retirement communi- ties (NORCs) and Village models they explored focused on keeping partici- pants’ “social convoys” (networks of friends, families, and others on whom they can draw for social support) broad and active by keeping participants involved in community governance and activities.

Limited health care, poverty, and malnutrition accelerate the aging pro- cess, while having access to a stimulating social environment, a well-balanced diet, and participation in a program of physical activity can enhance both the intellectual and physical functioning of older adults. It is clear that the person–environment perspective is a key to understanding how older adults cope with their losses; when social interactions and supports are few, elders have fewer resources with which to cope. Helping older adults remain actively involved in social relationships not only seems to enhance their sense of well- being (Carstensen, 2015), but to actually enable better health and ability to cope with losses and other stressors.

For older adults, the final 30 years of life can be a time of reinvention, as this phase of life does often bring a gradual release from the daily demands of work and family and an opportunity to create a new life structure, depending upon health and resources. Older adults also provide role models for adult children and grandchildren, who can be inspired by the vitality and sheer courage demonstrated by their elders to face the challenges of their daily lives with optimism. Because older adults have more life experience and often have faced challenges and opportunities that younger adults have not, they possess wisdom to pass along.

POSITIVE AGING—A PARADIGM SHIFT

Assuming economic sufficiency, people in their 60s can now anticipate many more years, even decades, of healthy, productive, and fulfilling life. Instead of withdrawing after retirement and focusing on mortality, many older adults embrace the role of “elder” in ways that allow them to provide service and wisdom to their communities (www.centerforconsciouseldering.com). One of the expressions of this shift is the new Positive Aging movement (www.chang- ingthewayweage.com; www.boomer-livingplus.com; www.Fiercewithage .com; www.whitehair.com) that urges seniors to use their wisdom, experi- ence, and passion to reinvent themselves beyond midlife (Life Planning Network, 2013).

The Center for Conscious Eldering is another network whose goal is to help older adults realize their potential and to encourage passionate engagement and service to communities. This engagement is grounded in “being” rather than “doing” and is informed by the ongoing experi- ence of one’s spiritual depths and the guidance that can be found there (www . centerforconsciouseldering.com). Still another resource is The Transition Network, a national organization whose goal is to help women over 50 navigate various life transitions (www.TheTransitionNetwork.org). The New Senior Woman (Fleisher & Reese, 2013) provides vignettes of senior women

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who are redefining this stage of life. Fleisher and Reese’s blog, Elder Chicks, provides a weekly forum for older woman to share their accomplishments, thoughts, and worries.

This focus on “Positive Aging” fits with a new understanding that older adults appraise life more positively than previously recognized. Older adults tend to remember events in their lives more positively than do younger adults (Schryer & Ross, 2014). Considering how appraisals drive well-being, this pos- itive bias may protect aging adults and explain Carstensen’s (2015) finding that most older adults report a sense of well-being.

LOSSES EXPERIENCED BY OLDER ADULTS

Death Losses

Loss of Partner

The loss of a spouse/partner is one of the most common experienced in later adulthood. As the population of older adults grows more rapidly than any other age group, there are more widows and widowers than ever before (Nseir & Larkey, 2013). The loss of a spouse can result in increased mortality, disease, depressive episodes, impaired immune function, sleep disruption, and overall poorer physical health (van den Berg, Lindeboom, & Portrait, 2011). Boyle, Feng, and Raab (2011) assert that widowhood shortens life expectancy. The majority of widows and widowers are over 65 (Carr, Nesse, & Wortman, 2006) meaning that many older adults are called upon to cope with, and hopefully master, the transition from being in a couple to functioning independently.

Although many older adults (especially women) expect to lose their spouse during this phase of life, a partner’s death in late adulthood can nevertheless be devastating. Hooyman and Kramer (2006) report that grief responses to losing an adult child and a spouse are similar (p. 307). Elders are particularly challenged by spousal loss because: (a) the social networks of the elderly are smaller due to death and deteriorating health among their peers; (b) spousal relationships among the elderly assume increasing importance for the older adult because, in a highly mobile society, fewer relatives are available to provide support; and (c) many older couples have formed deep and strong attachments and are highly interdependent due to roles, commitments, and traditions (Moss, Moss, & Hansson, 2001). Widows and widowers also have long-standing social roles as wife or husband to the deceased partner within their communities and these may be difficult to transition (Hansson & Stroebe, 2007). Finally, older adults are likely to lose a spouse or partner while at the same time facing chronic illness, disability, diminished physical stamina, and/ or negative cognitive changes. At a time when financial, social, and adaptive resources are declining, the loss of a spouse or partner requires greater coping efforts than may be true for those in middle or early adulthood (Carr et al., 2006).

Research indicates that widows and widowers who find purpose in their suffering and those who make meaning of their loss are able to adjust better than those who find no meaning or purpose (Coleman & Neimeyer, 2010; Kim, 2009). Meaning-making involves reconstructing one’s worldview and under- standing the loss. People find meaning in various ways. Some widowed adults

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find comfort through helping other recently bereaved persons while others feel gratified by assisting survivors with more instrumental challenges, such as helping with home repairs, car maintenance, or paying bills. Some find mean- ing through tissue or organ donation (Hogan, Coolican, & Schmidt, 2013).

Still others focus on finding “benefit” instead of finding meaning, espe- cially if their loved one’s death was violent, untimely, or random (Davis & Nolen-Hoeksema, 2001). Finding benefit involves finding personal value or significance in the event and developing new strengths as a result (Coleman & Neimeyer, 2010). Those who find benefit often grow stronger, more self-confident, and feel more compassion for others than they did before the loss. Hogan and Schmidt (2002) assert that when the bereaved talk with other people, they find relief from their emotional pain. Kim (2009) argues that mere discussion is insufficient and that it is necessary to use the conversation to understand one’s thoughts about the loss, make meaning, or find benefit.

People can be positively transformed by their loss and over time survivors develop more optimism, feel less emotional pain, and reconstruct more mean- ingful identities and purposeful lives. They also become more compassionate and tolerant of others’ emotional struggles. Similarly to the dual process model (Stroebe & Schut, 1999, 2010), Hogan and Schmidt (2002) believe that bereaved people oscillate between yearning for the lost person and experiencing intrusive thoughts about the deceased, and trying to avoid reminders. We suspect that this oscillation allows widows and widowers to make meaning of the relationship they had with the deceased, identify the lessons they have learned from their loss, and work to create continuing bonds with the deceased.

The loss of a life partner involves the loss of oneself and the need to recon- struct one’s identity. Reconstructing one’s identity as a widow or widower and learning to be independent in the face of a disrupted everyday life is an essential aspect of mourning after spousal death (Naef, Ward, Mahrer-Imhof, & Grande, 2013). Research with older widows (Montpetit & Bergeman, 2010) suggests that one’s self-concept undergoes a structural reorganization following spousal loss. The degree to which a woman defined herself as a married woman whose pri- mary skills were domestic correlated with a greater sense of disruption after a spousal death and more need for revising one’s self-concept. Having other sup- portive relationships and feeling capable of independent functioning allowed new positive self-constructs to develop (Montpetit & Bergeman, 2010).

Consistent with Klass, Silverman, and Nickman (1996) thesis about con- tinuing bonds, Naef et al. (2013) found that widows found comfort in con- tinuing their relationship with their lost partner via conversations, sensing of presence, memories, dreams, and taking on an activity of the deceased. Yearning was often found when the relationship with the deceased had been good and was not changed by levels of social support (Stroebe, Abakoumkin, & Stroebe, 2010). Troyer (2014) also found that continuing connections seemed to bene- fit the bereaved and that for most widows and widowers, a postbereavement experience (sense of presence, and seeing or hearing the deceased) was comfort- ing. Holland, Thompson, Rozalski, and Lichtenthal (2014) found that periodi- cally reassessing any bereavement-related regrets helps the widow or widower maintain the continued relationship with the deceased in a positive manner.

Some older bereaved spouses have great difficulty managing their per- sonal lives for several years and some remain socially active, independent,

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and motivated to make the best of the situation. Older adults vary in their emotional reactions to grief; many feel angry, guilty, and lonely (at least for a time), while others cope with a return to activities and relationships fairly rapidly. Flora and George (from our first edition) illustrate this diversity. Flora was 89 when her spouse of 60 years, Jim, died of heart failure at 87. One month later, their 39-year-old son died. Flora focused on the loss of Jim (Walter, 2003) rather than her son and expressed frustration that Jim had been a very “into himself person.” Flora believed that her ability to be angry at Jim after his death contributed to her well-being as a widow. Flora gradually was able to balance both the positive and negative aspects of her relationship with Jim, and although she felt her anger about being shut out of some of Jim’s life, she also felt pleasure that he was proud of her for her professional accomplish- ments. Although Flora believed that she lost a part of herself with Jim’s death, she also found a new part of herself as she built upon her ability to be more outgoing. Flora’s story demonstrates how one might develop a sense of integ- rity and wholeness after a spousal death.

George and Barbara (also mentioned in our first edition) were married 52  years and he was devastated by her death when he was 78. Even 4 years after her death, he was still very lonely and found himself crying some of the time. George started to socialize with a few women friends after about 4 years and said he feels better each year, but he does not like to discuss Barbara’s death and cries only with his adult children. These differences in reaction could be attributed to gender or to the different reactions among the elderly around spousal loss. The adjustments after the death of a spouse relate strongly to the relationship they shared and coping, while idiosyncratic, nearly always chal- lenges a widow or widower after a long-term marriage.

Nonmarried couples are increasingly common among older adults. Walter (2003) described some of the issues with Barry and Julie’s relationship. Both partners had been widowed for about 3 years and met at a dance for wid- ows and widowers. Following Julie’s death, Barry was devastated but glad that he was with her when she died. Barry had to negotiate with Julie’s daugh- ters about the funeral arrangements because he felt strongly that he knew what Julie would have wanted. Later, he took both a computer class and also a sewing class to stay entertained and to learn new skills. Barry’s involvement in organizing Julie’s funeral is an example of “loss oriented-coping” as described by Stroebe and Schut (1999, 2010), while in his computer and sewing class he used “restoration orientation” to adapt to his new life.

Research indicates that during both early and late phases of the bereave- ment process, restoration oriented coping is more helpful to both widows and widowers (Carr, 2010; Richardson, 2010). When surviving partners learn new tasks that their deceased partners previously performed, the surviving partner can feel more empowered and independent. A stressor specific to nonmarried partners is that they may need to learn these new skills without much recognition by others that they had a partner who was able to fulfill those tasks in the past.

Shear (2010) asserts that the oscillation of the dual process model may be more about acknowledging grief and avoiding grief than about focusing on loss or restoration, and she reminds us that there are times when restora- tion orientation can be as anxiety-provoking as grief. She suggests that some avoidance of negative emotions can be adaptive, but that avoidance can lead

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to complicated grief when it is prolonged and consistent rather than fluidly dynamic (that is, when no positive emotions, memories, or skill building are part of it).

Bennett, Gibbons, and Mackenzie-Smith (2010) amplify this notion. They found that bereaved older adult partners who were adjusting well to their loss reported stressors of new roles/identities/relationships and intrusion of grief significantly more often. Those adjusting less well-reported frequent stress- ors of denial/avoidance of restoration changes, and distraction/avoidance of grief. They note that a behavior that starts in one way (e.g., attending an activ- ity to avoid grief) may evolve (e.g., developing new roles and relationships) to be more productive in managing grief over time.

In a recent survey of therapists who are aging, Michael King suggested that gay and lesbian individuals who had marriages or long-term partnerships may exhibit more resilience after having had to fight battles and make adjust- ments throughout life. Dr. King explains that “You get older, you get bolder, and not so embarrassed by things” (Jackson, 2013, p.12) and he believes living through the death of many friends helped him lose a fear of death. It may be that older adults who have had challenges to overcome are better prepared to take on the challenges and adjustments that come with aging.

However, older gay and lesbian adults grew up in an era when ageism, homophobia, and discrimination were customary. Homosexuality was illegal in some places (Fenge & Fannin, 2009). Loss of a partner is therefore compli- cated by this generational experience. While they are ageing and experiencing the death of friends and family in the same ways as the ageing heterosexual population, they may resist approaching agencies for support due to concerns associated with coming out and discrimination (Fenge & Fannin, 2009). One bereaved gay partner reports how difficult partner loss can be in a heterosexist world:

What it does is it puts something else on the table, which actually isn’t my agenda at the time . . . it puts homosexuality on the table, when actually all that I care about is the fact that my partner’s died and I’m hurting. . . . I would have preferred to have been with other gay people (Fenge & Fannin, 2009).

The remarks of this bereaved partner make it clear that although bereaved gay and lesbian partners experience the same pain as heterosexual partners, they may not feel validated by the heterosexual population and find it difficult to find bereavement support services directed to their needs. In addition, as gay and lesbian adults age, there are fewer social networks available to them, as gay clubs and other social venues tend to cater to younger generations.

Death of an Adult Child

As longevity continues to increase, many older adults in our society will experience the death of an adult child. Although there is a growing literature (Robinson & Marwit, 2006; Woodgate, 2006) about the loss of a child when a couple is in early or middle adulthood, there is little research about the loss of a child in older adulthood. A recent review of the literature about aging parents who experience an adult child’s death observes that as a child grows

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older, the parental relationship with that adult child changes to one of sharing mutual interests and companionship rather than one of protection and physi- cal caretaking (Van Humbeeck et al., 2013), meaning that the relationships are more egalitarian and involve a “distant closeness.” Research (Van Humbeeck et al., 2013; Woodgate, 2006) on bereaved middle-aged and older adult par- ents converges on the difficulty of living in a world without “closure” and parents’ work to retain the image of themselves as parents while also keep- ing memories of their child alive. Older adults expected to die before their child and wonder “Why her and not me?” and may suffer greater survivor ’s guilt than younger parents who lose a younger child (Corr et al., 2006; Van Humbeeck et  al., 2013). Older adults often experience cumulative losses, as the adult child may be an additional loss after those of health, friends, and spouses.

Due to the fundamentally different life stage and developmental tasks, the older adult experiences grief in a different way than young or middle-aged parents. First, older adults have fewer opportunities to invest in other relation- ships after the loss of their adult child. They experience less social support because of a shrinking social network. Second, since adult children are often caregivers for their parents, the loss increases the possibility of their admission to a nursing home. Third, older adult parents often get less support because they have more difficulty actively searching for it and/or because their griev- ing is less likely to be recognized by others (Van Humbeeck et al., 2013). The impact of the loss of an adult child at this stage of life is frequently underesti- mated, and older adult parents are rarely involved in rituals such as arranging the funeral, which makes it more difficult for them to process their loss (Van Humbeeck et al., 2013).

An additional (secondary) loss is that they may lose contact with their grandchildren, especially if they have a strained relationship with their child’s partner or if their child’s partner remarries. These conditions place the older adult at high risk for complicated mourning and disenfranchised grief. Further, it is typically and incorrectly expected that their experience has bet- ter prepared older individuals for the death of a loved one (Van Humbeeck et al., 2013).

The death of an adult child may increase older adults’ concerns about their future (Who is going to take care of me now?) and parents may feel they have lost part of themselves. This loss may make life seem hopeless and des- perate; common questions are “What should I do with my life now?” ”What is the value of my life?” and “What has life to offer me?” (Van Humbeeck, 2013, p. 592). For some older adults, the adult child’s death may provoke longing for one’s own death, both as an end to suffering and a reunion with the deceased child (Van Humbeeck et al., 2013). Practitioners need to be aware of the risk for suicide in this bereaved older adult population. Studies (Floyd, Seltzer, Greenberg, & Song, 2013; Parkes & Prigerson, 2010) of midlife and older adult parents who have lost an adult child confirm that the ability to find and maintain a sense of meaning in life is closely associated with a higher level of adaptation. Thus, to reduce the risk of complicated grief and/or suicide, intervention with older adults who have lost an adult child involves validating the loss and helping the bereaved to find meaning and purpose.

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Death of Friends

Due to increases in average life expectancies and the life stage of older adults, elders are at highest risk for the loss of friends and colleagues. This is espe- cially true for those adults whose social networks are comprised primarily of peers. Nevertheless, the death of friends is seldom a matter for sympathy despite the fact that friends share a history of experiences and memories that no one else can fully understand (Hooyman & Kiyak, 2008). Because older adults deal with so many types of losses, they may not have much energy to invest in new relationships. We cannot emphasize enough the importance of senior centers and other programs that provide opportunities for socialization, particularly with people of different ages.

Resilience in the Face of Death Losses

Resilience is the capacity to experience challenging events like losses and trag- edies and be able to cope and function after a period of healing. Many older adults bring strong personal capacities to coping with loss. Some can reevalu- ate negative events to find something positive in the experience, while others lower their standards and expectations to handle adversity. Moss et al. (2001) report that older adults may be more skilled at finding meaning in their losses than are younger adults. Older adults’ declining health, degree of religiosity/ spirituality, socioeconomic class, concurrent stressors, personal capacities, relationship with the deceased, and degree of familial and social support affect how they experience loss (Carr et al., 2006).

Literature on the resilience of the elderly after the death of a spouse indicates that although there is diversity in response to spousal loss, the most common reaction (45%) from a prospective study of older widows and wid- owers fell into the resilient category, characterized by low levels of depression, and grief symptoms (Bonanno et al., 2002). However, it is not uncommon for older bereaved spouses to develop a serious illness or to die within 1 year of the death of a spouse (Dande & Pandit, 2013). Social support can mitigate the stress surrounding such a loss. Whether or not social support is perceived by the grieving spouse to be meaningful and helpful is a critical aspect of the benefit of social support to resilience or positive aging (Hill, 2005). Notably, in a small survey of therapists and social workers in later life, all reported that knowledge of themselves, purpose and meaning keep them “relishing” life and ready to keep working toward things like social justice and maintaining important relationships (Jackson, 2013). Indeed, helpful social networks seem essential to resilience. Unfortunately, the social networks of older adults are narrowed by the death and deteriorating health of their members. It is most helpful if older adults can limit relationships that are no longer supportive while creating new and supportive relationships.

Suicide Among Older Adults

Older adults who are less resilient and overcome by their losses may decide to end their lives. Suicide rates and the lethality of attempts increase with age, and men over 75 have one of the highest suicide rates (Dombrovski et al., 2010; Sisask, Kolves, & Varnik, 2009). Older adults may have a stronger wish to die than those who are younger.

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One qualitative study with older adults who had attempted suicide (Bonnewyn et al., 2014) found that respondents reported that life loss events were so overwhelming that they undermined the foundations of their lives. For the older adult respondents, life after loss was not worth living. The respondents felt intense loneliness, alienation, and disconnection, and had a tendency to isolate themselves before their suicide. The free floating anxiety (trembling, shaking, breathing difficulties) symptoms reported by these older adults in the weeks prior to their suicide attempts are corroborated by other research (Liu & Chiu, 2009). Bonnewyn et al.’s respondents “found it unimagi- nable to integrate the loss and loneliness into the previously constructed story of their lives for the remaining time they had left” (Bonnewyn et al., 2014, p. 617). The findings from this study suggest that health professionals should be mindful of sleep deprivation, physical complaints, feelings of anxiety, and exhaustion in their older adult patients.

Suicide is also a major concern among U.S. veterans, who are at higher risk for suicide than nonveterans despite efforts to identify them (Braden, Overholser, Fisher, & Ridley, 2015). Veterans often deny suicidal ideation, and it appears that assessing the presence or absence of life meaning (having a framework or set of goals for life and feeling a sense of fulfillment) may be a better indicator of whether a veteran is at risk for suicide (Braden et al., 2015). Veterans have admitted minimizing/denying suicidal thoughts to providers due to feelings of shame, concern about the consequences of revealing sui- cidal thoughts, and a belief that such thoughts should be kept private (Ganzini et al., 2013). At the end of this chapter, Findley’s case presentation of Wesley is a good example of how a sensitive, skilled professional can intervene with an older veteran to target his posttraumatic stress disorder (PTSD) and depres- sion. Knowledge of military culture and its stoicism and privacy are critical features of work with this population.

Making sense of loss and difficult life situations can lead to meaning- making; conversely, an inability to make sense of these experiences can lead to depression and increased psychological distress. Even so, meaning-making is notoriously idiosyncratic and difficult to define. Many meanings are ascribed to meaning-making (Park, 2010). Various meaning-making interventions have been shown to help older adults with dementia (Mackinlay & Trevitt, 2010), advanced cancer patients (Breitbart et al., 2010), and general psychotherapy patients (Adler, Harmeling, & Walder-Biesanz, 2013). These interventions seem likely to help bereaved older adults and depressed veterans avoid suicide.

NONDEATH LOSSES

Coping With Chronic Life-Threatening Illness

Older adults commonly live with a chronic/life-threatening illness or dis- ability. For many, the degenerative aspects of aging (bone loss, arthritis, etc.) have taken hold. Movement and social interactions become more challeng- ing. Many older adults can move beyond these losses and create new reali- ties for themselves. Well-being (Carstensen, 2015) and a sense of integrity and engagement (Sachs, 2015) are possible for elders who keep involved

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and try to maintain their health. Once again, this requires a reworking of identity as one learns to live with an unfamiliar body and a new set of impairments or challenges.

Breast cancer brings new losses to older women. Older women’s rates of breast cancer rise every 5 years and their chance of dying as a result of breast cancer is also higher (Komen, 2015). Breast cancer can represent a loss of beauty and sexual attractiveness as well as a loss of health. Once again, the cumulative losses may challenge women’s ability to cope, yet many are able to approach their diagnosis with grace if not equanimity.

Some older adults bring strong personal capacities to their confrontation with loss. They have learned how to reappraise negative events to find some- thing positive in them. Some use humor as a way of coping with losses and indignities (Lurie & Monahan, 2015). Others struggle with chronic disease in a more negative way and are unable to integrate the loss of their previous state of health.

A chronic illness like Alzheimer ’s disease may have a more challeng- ing impact than a disease like cancer. Alzheimer ’s entails ambiguous loss (Boss, 1999) as the person is still physically present, but psychologically absent in that they are no longer quite the same person. It seems prema- ture for a spouse/partner to grieve in socially sanctioned ways because this would remove the hope of the return of the patient to the partner ’s life; yet on one level the spouse/partner knows that the spouse/partner will never return. Long-term ambiguity can create a sense of loss of identity and mastery, leading to helplessness and hopelessness in the family system and within the partner/primary caregiver ’s life. Dementia progresses to the point where intimacy and recognition cease. This can be especially pain- ful. Those involved with care of Alzheimer ’s patients are at greater risk of strain, depression, physical problems, and have less time for leisure and for other family members (Schultz et  al., 2003). The caregiver (usually the partner) of an Alzheimer ’s patient must continually redefine and reinterpret the relationship with the loved one. This in itself is stressful. Caregiver sup- port groups decrease the isolation experienced by the caregiver and validate caregivers’ concerns. Respite care is another support vital to caregivers’ well-being over time. Although often funded by home care agencies hoping for business, online support has allowed caregivers with Internet access to receive support while remaining home and available to their loved one (see www.caregiveraction.org; www.caregiverstress.com; www.medicare.gov/ campaigns/caregiver/caregiver.html)

TYPICAL AND MATURATIONAL LOSSES

Loss of Home/Relocation

As adults age, the immediate home environment becomes more important because: (a) older adults have limited mobility and spend more time at home; (b) home becomes the place where aging bodies need the comfort of familiar spaces and where functional abilities are not taxed (Oswald & Wahl, 2005); and (c) the home and surrounding neighborhood may represent a lifetime of

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continuity. Moving from one home to another is nearly always difficult, but for older adults who have lived in a home for many years, a move to a new location can be traumatic even when it is to a more comfortable, safer home (Hooyman & Kiyak, 2008).

A survey by the AARP in 2005, found that 95% of those over age 75 desired to stay in their homes, and even at age 50, about 89% expressed that preference (Hooyman & Kiyak, 2008). They wanted to stay in their homes due to familiarity, close neighbors, and a sense of control of the known (Hooyman & Kiyak, 2008). Family and friends may question older adults who do not want to leave a large home that is too difficult to navi- gate or where repairs are numerous. Nevertheless, families and caregivers need to recognize the home as symbolic of the elder ’s identity and sense of safety (Hooyman & Kiyak, 2008). Despite such losses, possible benefits of a move for older adults include finding a situation that provides needed stimulation from others and involvement in daily activities of value to older adults who had limited outlets for hobbies and other recreational interests. Consideration of the gains and losses involved in a move should be part of preparation for relocating.

When older people need to move to an assisted living facility due to chronic illness or disability, the adjustment is made more difficult by little time for preparation. When severe or sudden disability requires a move to a nursing home, older people may feel even more distraught. It is impor- tant to examine the close relationship between self-identity and home when elders move to long-term care facilities. This sort of move threatens person- hood, and communities that provide ways to maintain control and mark- ers of individuality are likely to offer the easiest adjustment (Rubinstein & Medeiros, 2005).

Regardless of the nature of the move, many older adults experience feelings of sadness and loss when giving up a familiar setting and many of their possessions. This is a maturational loss that can be experienced as dis- enfranchised by the older adult when family and friends do not understand their feelings. They must dispose of a lifetime of possessions to which power- ful memories attach, increasing the feelings of loss associated with a move (Hooyman & Kyak, 2008). When moving an older adult to a nursing home, it is wise for family members and/or caregivers to help the adult select a few spe- cial possessions that can function much like a “transitional object” for a young child. Older adults can feel soothed by having specific pieces of furniture or smaller objects that hold special meaning.

The death rate for nursing home residents is estimated to be over 300  times higher than community rates (Djivre, Levin, Schinke, & Porter, 2012). Residents must cope with “living with dying” on a regular basis and facilities should incorporate palliative principles, such as support for griev- ers, caregivers, and friends of the deceased (Djivre et al., 2012). Professionals, researchers, and residents should collaborate to discover ways to human- ize care and revise traditions, rules, and training for managing the deaths of residents. Residential staff must compassionately recognize and respect residents’ grief after other residents’ deaths and must also recognize the anxiety surviving residents feel due to the reminder of the imminence of their own demise.

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Grandparent Caregivers

Grandparent-headed households are one of the fastest growing family units in the United States (Hayslip & Kaminski, 2008). In households where the grandparent becomes the custodial caregiver, ambivalence pervades relations among the generations. Sometimes the adult child returns (or is present) in the household as well and this can lead to challenges about responsibility for the grandchild’s welfare. Many grandparents feel caught between their wish to help meet the needs of their adult children and grandchildren and their resent- ment of the time and money involved in doing so (Hayslip & Kaminski, 2008).

Custodial grandparents frequently experience a sense of loss connected with their inability to be traditional grandparents who can enjoy their grand- children without the responsibility of disciplining them (Hayslip & Kaminski, 2008; Kolomer & McCallion, 2005). Custodial grandparents are often coping with the circumstance that led to their becoming custodial grandparents, fre- quently related to their own adult children who have been mentally or physi- cally ill or have suffered with addiction (Hayslip & Kaminski, 2008). Custodial grandmothers are much more likely to live in poverty and may experience loneliness and loss because their peers do not share similar responsibilities (Hooyman & Kiyak, 2008).

Nevertheless, some custodial grandparents see dramatic improvement in their grandchildren’s development and realize how their involvement has con- tributed to this. Custodial grandparents have been found to experience gains in self-worth, self-esteem, achievement, and competence as a result of raising their grandchildren (Essex, Newsome, & Moses, 2004). They can instill a sense of culture and family history in their grandchildren and can define their care- giving as a meaningful contribution to the family and to the world (Hayslip & Kaminski, 2008). When they are healthy, these grandparents maintain a sense of well-being. It is more problematic when the grandchild has behavioral or physical difficulties that impinge on the grandparents’ ability to feel a sense of accomplishment (Hayslip, Blumenthal, & Garner, 2014). Although custo- dial grandparents may lose leisure and recreation time they had expected, and financial resources they anticipated for their own use, many seem to be resil- ient as they take on the role.

INTERVENTION

Meditation as an Intervention for Older Adults

Intervention with older adults requires awareness of age-related decline in cognitive functioning. A systematic review (Gard, Holzel, & Lazar, 2014) of studies investigating the effects of meditation on cognition and cognitive decline among aging people reveals that meditation techniques have promise in offsetting age-related cognitive decline and may actually increase cogni- tive capacities in older adults. One of the more dramatic findings was in the area of improved attention when practicing mindfulness meditation (Gard et al., 2014; Prakash, De Leon, Patterson, Schirda, & Janssen, 2014). For older adults who learn and practice mindfulness mediation, improvement in ability

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to regulate emotions and manage reactivity is common (Prakash et al., 2014). Furthermore, mindfulness capitalizes on the older adult’s shift in motivational goals from future—oriented desires to the present—focused emotion regula- tion and gratification inherent in mindfulness meditation practices.

Meditation can be useful for bereaved older adults because traumatic grief often produces a pattern of avoidance of emotions, thoughts, and memo- ries surrounding the grief experience, a key aspect of complicated bereavement (Cacciatore & Flint, 2012; Shear, 2010). This avoidance behavior interferes with the ability of bereaved older adults to integrate the loss. A mindful meditative approach can be used in the therapy to model for clients ways they may be able to be with and surrender to their grief and be more likely to integrate their loss, leading to a more meaningful, growth oriented perspective on life.

END-OF-LIFE ISSUES

Over the last decade, people have achieved a new candor in discussing end-of- life issues, particularly death and dying. Death cafes (http://deathcafe.com/) have sprung up in cities around the world, enabling adults to share their con- cerns and questions about end-of-life issues, as well as worries/ concerns about the dying process itself. As awareness and discussion become widespread, cli- nicians will be asked to help adults deal with fears/concerns about end-of- life issues for themselves or their loved ones (Reith & Payne, 2009). Questions emerge as adults examine in detail what type of support and medical care they may want at the end of their lives.

Defining a “good death” is as varied as each adult’s desires. Many fac- tors shape the end-of-life experience including one’s health, one’s family, one’s history with death, prevailing medical practices, and health care technologies that encourage aggressive treatment. Most adults who are facing death are most fearful of pain and suffering (Gamino & Moore, 2011; Hultman, Reder, & Dahlin, 2008). In an era where contemporary medicine has the ability to keep individuals alive long after a natural death would normally occur, many are afraid they will not be able to avoid a lingering, painful death. These fears, together with a sense that one’s discomfort was being dismissed, lead some to request a hastened death, often in the absence of knowledge about other alternatives for managing pain and suffering (Schroepfer, 2007). Yet, alterna- tives such as palliative care and hospice can assist with pain, spiritual and psychological suffering, and physical care needs.

Palliative and Hospice Care

All hospice care is palliative care, but not all palliative care is hospice care (National Caregiver’s Library, 2015). Palliative care is focused on limiting pain and suffering while curative medical treatments continue, whereas hospice care starts when curative medical care ceases and the focus of care becomes easing pain, symptoms, and suffering while focusing on quality of life during terminal illness. The World Health Organization defines palliative care as:

Palliative care improves the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief,

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spiritual and psychosocial support from diagnosis to the end of life and bereavement. Palliative care:

■ provides relief from pain and other distressing symptoms; ■ affirms life and regards dying as a normal process; ■ intends neither to hasten or postpone death; ■ integrates the psychological and spiritual aspects of patient care; ■ offers a support system to help patients live as actively as possible

until death; ■ offers a support system to help the family cope during the patients

illness and in their own bereavement; ■ uses a team approach to address the needs of patients and their

families, including bereavement counselling, if indicated; ■ will enhance quality of life, and may also positively influence the

course of illness; ■ is applicable early in the course of illness, in conjunction with other

therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications (WHO, 2015).

The final point is the differentiating feature as hospice meets all the prior points, but no longer focuses on curative care. Hospice care in the United States is part of the Medicare benefit and therefore covers more services while pal- liative care is typically focused on pain management and is covered through one’s medical insurance.

One of the goals of palliative care is that individuals should be helped to experience a respectful death (Reith & Payne, 2009). By definition a “good death” entails anticipating death and understanding what can be expected; being able to retain control of what happens; being afforded dignity and privacy; having control over pain relief and other symptom control; having a choice and con- trol over where the death occurs; having access to information and expertise of whatever kind is necessary; having access to any spiritual/emotional support required; having access to hospital care in any location, not only the hospital; having control over who is to be present and who shares the end; being able to issue advance directives which ensure wishes are respected; having time to say good bye and control over other aspects of timing; and being able to leave when it is time to go, and not having to have life prolonged pointlessly (Reith & Payne, 2009). Typically, when hospice is elected, patients agree to avoid resusci- tation and hospitals in favor of remaining at home for their deaths.

The philosophy of hospice is to promote quality of life and the dignity of the individual while providing supportive compassionate care to the patient and family. The focus is on alleviating unpleasant symptoms rather than on cure of the life-threatening disorder or disease. Even when the patient is in an institutional setting, hospice tries to create a homelike environment for the patient and attempts to support the patient’s family. One of the goals of hos- pice care is to focus on the quality of life so that positive reassurance and com- fort can be provided through ongoing interactions with the patient and family. Clukey (2007) found that hospice caregivers (including family) and dying

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patients focus on the importance of being present, “just be[ing]there,” as the most helpful aspect of hospice. Both dying patients and caregivers (when asked what they would do for a friend in a similar situation) reported that what was most helpful was being available just to listen (Clukey, 2007). Hospice care is focused on listening deeply to what the patient wants, fears, and hopes for and then trying to assure that they can be comfortable and pursue the things that are still possible.

The website www.wisconsinmedicalsociety.org/professional/hcw pro- vides the viewer with a 10-minute video to engage adults in making their plans, having the difficult conversations, and preparing medical directives.

Death With Dignity—Patients’ Rights at the End of Life

As awareness of choices at the end of life has evolved, interest in advanced medical directives and the right to hasten death have evolved and brought changes across the United States. Advanced medical directives are legal docu- ments that allow individuals to specify what medical care they desire when they are no longer able to make their wishes known. They can refuse such life- prolonging efforts as feeding tubes, respiratory ventilation, and cardiac resus- citation. Many refer to these documents as “living wills” as they allow one to define what one would wish at the end of life while one is still conscious, competent, and able to make such decisions for oneself. These documents allow family members to follow their loved one’s instructions rather than to feel responsible for withholding medical care. These documents allow medi- cal providers to withhold treatment rather than make active efforts to end life.

Death with dignity laws were introduced and passed in Oregon (1994/1997) and Washington state (2008/2009) and introduced and passed in legislation in Vermont in 2013. Since the very public death of 29-year-old Brittany Maynard in late 2014 (after a move to Oregon to avail herself of what some call physician assisted suicide) (www.cnn.com/2014/10/07/opinion/ maynard-assisted-suicide-cancer-dignity), momentum has grown for legisla- tion that allows competent terminally ill individuals to have physicians help them end their lives. Compassion and Choices, the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life (www.CompassionandChoice.org), has been active in promoting these legislative changes. Oregon now has extensive experience with a protocol that allows individuals to access medications that will bring death [called physician aid in dying (PAD)], within a very precise protocol (www. deathwithdignity .org/access-acts). They find that people often feel reassured by having the medication available should they need it and many do not actively take the medication when their pain, symptoms, and alienation from loved ones and caregivers are managed with quality hospice care.

Some are resolute that death with dignity laws are harmful. People fear that insurers will try to coerce patients to make use of this option and they assert that such laws imply that a compromised life is not worth living (Town Hall, 2015). Some believe that PAD violates the sanctity of life, errs when it moves to active hastening of death rather than passive avoidance of life-prolonging treatments, risks promoting euthanasia, and is open to misjudgments on the

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part of physicians about the terminal nature of a particular patient (Stark, Dudzinski, & White, 2013). Clearly, the choice must remain with the competent adult to make their own decisions.

Following this section, Brooks writes about the importance of “being present with the dying.” She had written movingly of Olivia in our first edi- tion, and demonstrated how hospice care provided compassionate care so that Olivia could die with dignity and independence. In order for social workers and other caregivers to be present with their dying clients, the professional caregiver’s grief response should be recognized and respected. Brooks here writes about the need for hospice administrators to promote “the opportunity for clinicians to be reflective and self-aware” and to be validated for the grief experienced in their work with dying patients and their families.

READINGS

The Ever-Changing Landscape for Hospice Social Workers

Michelle Brooks

Michelle Brooks, MSS, LCSW is the associate director of psychosocial services at Penn  Wissahickon Hospice & Penn Homecare in Philadelphia, Pennsylvania. The focus of Michelle’s social work career has been end of life care and bereavement. Currently she functions as a practice leader and administrator for both the hospice and homecare agencies associated with the Penn Medicine health system. In this role, she is most interested in the social issues that influence care decisions, patient/family success in the face of terminal and chronic health events, and supporting the staff in an ever-changing health care climate. Robert Neimeyer, Ken Doka, Judith McCoyd, and Carolyn Walter have been major influences on her social work practice and leadership role.

Providing care at the end of life has been at the heart of my social work practice. My practice has taken me to the bedside of the dying, into the homes of the bereaved, and currently I am the practice leader and administrator of a midsize nonprofit hospice. As an administrator, my role is to oversee the practice of the 15 MSW level staff members as well as the practice of chaplains, bereavement counselors, volunteers, and a music therapist. Working with patients and fam- ilies at the end of life is both challenging and meaningful for practitioners. Clinicians working in a hospice setting have a very personal connection to their work, what many refer to the work as a “calling” (Berzoff,  2008). For many, the work is significant not only to their professional identity but also to their personal identity (Berzoff, 2008).

Recently, I surveyed the social workers at my agency inquiring about what drew them to the work. The common theme in the responses was the deep meaning their work held for them; several connected it to their own experience of loss, and a few indicated that it was their own death anxiety that led them to working with the dying. In response to a question about the challenges in their daily practice, many talked about the difficulty of working

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with a younger population, and the most curious of responses came from a few social workers who talked about the pace of the work.

This idea of pace was intriguing but not completely surprising. The pace of the work has changed since I began working in hospice some 11 years ago at a small independent hospice. Now, my practice is with a large metropolitan academic health system. On average, the hospice census is about 170 patients (comprised of patients receiving care in their homes or in our general inpatient unit—a small number of patients reside in nursing home settings). Each social worker manages a case load of 25 to 30 patients.

The hospice serves a younger demographic (average age range 40–60  years), with 85% of the referrals emanating from the health system’s hospitals and physician practices. Patients seek care within the health system, sometimes as a last resort, because of the reputation for advanced and cutting edge treatments, particularly in the area of cancer. The health system has a palliative care program which supports patients undergoing challenging treat- ments, and the hospice also supports those patients with a palliative home care program. Palliative care programs continue to expand, and while patients have benefited from this focus on the palliation of symptoms—it may be a contributing factor in the ever decreasing length of stay for hospice patients. Currently, the average length of stay at the hospice is 10 to 45 days; the main contributor to that statistic is the increasing number of patients who are pro- vided hospice care in the final days of life. The shorter length of stay coupled with the tremendous turnover of patients (60%–70% of patients on service die each month), is the “pace” the social workers are talking about. The “pace” as they put it, has altered the practice of hospice social work.

Hospice work is relational work (Reupert, 2007). Social workers are charged with not only educating families about hospice services and benefits, but more importantly, at the heart of the practice is helping patients and fami- lies negotiate the challenges at the end of life. The challenges include the phys- ical symptoms, body changes, loss of control and independence, increased lethargy, and the existential emotional challenges of saying good bye. Essential to the work is the use of self, staying present, and bearing witness to pain- ful experiences. The work requires knowledge and skill, but because of the emotions aroused in working with the dying, it is essential for social workers to have good coping skills and personal emotional resources to manage the exposure to the dying process (Berzoff, 2008; Kanter, 2007). Rando (1984) talks about how “being present” with dying requires the clinician to tolerate their own death anxiety, while simultaneously providing a holding environment for the anxieties of individuals in their care. When workers are exposed to a high volume of death and suffering, they risk of losing their sense of professional identity and compassion. The work can begin to lose meaning, a risk identi- fied both in the literature (Berzoff & Kita, 2010; Seno, 2010) and by the social workers with whom I work. End of life work is highly personal, and with increased rapid exposure to death scenes—the losses may become personal too. The decreasing opportunity to engage in relational work is yet another loss for the clinician. The grief begins to stack up.

As the practice leader of the hospice psychosocial staff, this cumulative experience of loss is a focus of my work. Often I see that the staff does not feel entitled to their feelings of loss, an unrealistic expectation of their professional

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status. When the hallmark of good practice is connection with the individual and family, it is nearly impossible not to be affected by the experience. The grief can feel disenfranchised, not legitimate due to their professional role (Doka, 2002). Legitimizing the feelings, and giving forum to the expression of those uncomfortable feelings, is one of the key interventions to minimiz- ing unproductive countertransference and reducing compassion fatigue and burnout. It also supports the potential for increased insight into and under- standing of the work.

Although the exposure to grief experiences is intensely connected to the griever and the patient, hospice clinicians are largely remote (indepen- dent) workers. While hospice care is provided by an interdisciplinary team (comprised of nurses, social workers, chaplains, music therapists, bereave- ment counselors, volunteers, and home health aides), the actual interaction with patients and families is individual. The team meets weekly to discuss patient care and family coping capacity, but beyond that weekly interaction— each team member operates independently. This is a part of the work that many clinicians enjoy, but also can contribute to feelings of isolation—particu- larly when they have a powerful experience with a family. With much sicker patients coming on to service so late in their disease progression, the work can be emotionally challenging. Unchecked and unprocessed work can impact a clinician’s ability to provide authentic empathetic care and may contribute to symptoms associated with compassion fatigue and burnout.

As an administrator, I am charged to not only provide quality compre- hensive services to our patients and families, but also to tend to the clinicians’ practice while juggling the financial realities of being a hospice provider. The hospice financial environment has been impacted by decreasing reimburse- ments, increased scrutiny (routine chart audits by Medicare which suspends payment until the audit is complete), shorter lengths of stay, and the reevalu- ation of hospice eligibility criteria (particularly with patients with terminal neurological disorders, such as dementia—which financially penalizes the provider when the patient is on service too long, or is discharged). Baumrucker (2002) acknowledged that the ever increasing pressures of paperwork, regula- tory demands, and late referrals add stress to the frontline clinician. Shrinking resources coupled with increased demands heightens management’s respon- sibility to create a work environment that promotes engagement and renewal.

In my experience working with hospice clinicians, the first relationship to suffer when clinicians are approaching compassion fatigue and/or burnout is the relationship with the agency itself. The clinician begins to express dis- satisfaction with administration. In a perceived unsafe environment, clinicians will express intolerance to organizational changes necessitated by regulatory demands and perceive any change as devaluing their role. The relationship with the work is enhanced when the workload is perceived as reasonable while feeling valued and supported by the organization (Vachon, 2011). Recovering from disengagement can be a long and arduous process.

So, how do you sustain a compassionate workforce with so many obsta- cles and barriers? One way is by promoting the opportunity for clinicians to be reflective and self-aware. If compassionate care is delivered through the medium of relationship, then it stands to reason that the relationship between administration and frontline staff is essential to that goal. Building a trusting

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relationship with the staff mirrors the therapeutic relationship the staff are expected to have with patients and families. It requires tolerating the resis- tance to change, staying present in the witnessing of pain (perceived or real), and being self-aware. A few years ago, I attended a 2 day workshop with Robert Neimeyer. During one session of the workshop I recall him saying that we should never ask a client to do anything we, ourselves, are unwilling to do—I believe that is also true for leadership. If we desire our staff to be self- reflective and self-aware, then we as leaders must demonstrate and model those qualities.

Interventions

Joining with the staff in the expression of sadness following a patient’s death and supporting the expression of sadness is essential to maintaining a com- passionate end of life workforce (Berzoff, 2008; Seno, 2010; Walter & McCoyd, 2009). Recently, we expanded bereavement in the weekly Interdisciplinary group (IDG) meetings. Previously, the bereavement section of the meeting briefly opened our 2 hour meeting. By simply moving bereavement to the end of the meeting, we were able to not only expand the time allotted to recogniz- ing the death of our patients, but more importantly, we were able to add ele- ments of ritual which encourage individual clinicians to actively participate. At the beginning of the bereavement section of the meeting, everyone is asked to close their computers as they participate in a meditative exercise led by the bereavement coordinator and the music therapist. At the conclusion of the bereavement meditation, a candle is lit, the names of the recently deceased are read, and the candle is passed to each participant in the IDG meeting— which includes the manager and the physician. Upon receiving the candle, the clinician receives the full attention of his or her colleagues. Participants discuss individual patients, their experiences with families, their concerns for the bereaved, and many times touch on the meaningfulness and challenges of their work. Clinicians are also invited to share any personal burdens they may be carrying into their work or they may quietly pass the candle to the next team member. Participation has built over time, but now it is not unusual to have 100% participation—each team member speaking openly when they receive the candle. One reason I believe this intervention has been so success- ful was because staff participated in the development of the format. It has also provided an amazing opportunity for managers to offer support and to also receive support from the staff. Expression, acknowledgment, and validation of the relational experience are essential for practitioners engaged in emotional work (Huggard, 2008).

In any area of social work practice, clinical supervision is an important component for social workers. The agency provides monthly group supervi- sion sessions with a contracted social work supervisor. These agency supported sessions are very well attended by the hospice social work and bereavement staff.

We continue to move forward with efforts to provide clinicians opportu- nities to express and process their end of life experiences. The staff wants, and openly requests, support. Support at this agency was previously team-centered,

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facilitated by bereavement coordinators, rapidly becoming venting sessions. This was unfortunate. Although the intent was to support the work, instead disengaged clinicians dominated the format with complaints. As an admin- istrator, it became necessary to reevaluate the format. Movement was slow and began with utilizing the bereavement portion of the IDG to encourage clinicians to engage with expressions of grief. As we move forward we will continue to consult grief theory to develop meaningful programs. Currently, we are developing renewal sessions which will be offered to all staff (front- line clinicians, office staff, and management). The renewal sessions are being designed to allow grief expression, supportive intervention by trained staff, and will be offered frequently and at times that allow members of various teams to participate. The renewal sessions will offer music therapy, art ther- apy, yoga, meditation, poetry expression, mindful movement, scripture, and guided imagery. We anticipate initial participation will be slow, but we intend to go forward. The office is undergoing renovation and I am advocating for an identified space for renewal sessions.

Final Thoughts

End of life care involves multiple challenges for clinicians. The work is hard, personal, and intimate. As an administrator, I am aware that I need to be available to staff as they encounter their work. One simple practice is always working with an open office door. Clinicians have learned that they can walk in at any time and get my full attention. Dame Cecily Saunders, the founder of hospice care, understood that clinicians exposed to helping relationships with the dying and their loved ones can be exposed to dis- tress in providing compassionate care (Bertman, 2011). As an administra- tor, it is my responsibility to assist clinicians through the process and allow their best work to emerge. I  have found the best opportunity to do that is by enlisting the collective knowledge found in the literature on grief and bereavement. Incorporating meaning-making (Neimeyer, 2001) and recog- nizing that end of life workers experience disenfranchised grief (Doka, 2002) provide the best avenue to engage staff. It is complicated when associated with a large health system that does not always recognize end of life care as unique in the continuum of care. As a social worker, I “meet the client—the staff—where they are,” exploring the opportunities, and providing support to keep the work going. It remains both an honor and a privilege to work with them, and the parallel process is that they feel the same way about their clients.

End of Life as a Military Veteran: Wesley’s Story

Patricia A. Findley

Patricia A. Findley received her DrPH from the University of Illinois at Chicago with a focus on health policy, and her MSW from Loyola University in Chicago with a special emphasis on gerontology. She is a licensed clinical social worker (LCSW)

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who practiced for over 15 years in a rehabilitation hospital as a discharge  planner and then as an administrator. She is currently an associate professor at the School of Social Work at Rutgers University, the State University of New Jersey in New Brunswick, New Jersey, and the special assistant to the dean for interprofessional education. She has a Without Compensation (WOC) appointment as a health science specialist at the Veterans Administration New Jersey Healthcare System in East Orange, New Jersey, and holds an adjunct faculty appointment with the Uniformed Services University for the Health Sciences in Bethesda, Maryland. She has authored numerous peer-reviewed articles and book chapters, and has co- authored the book, The Cancer Survivor ’s Guide: The Essential Handbook to Life After Cancer, with Michael Feuerstein, PhD, MPH.

Background

In 2010, approximately 40% of veterans were 65 years old or older (Chatterjee, Spiro, King, King, & Davison, 2009). Nearly 70% of veterans are not seen in Veteran Administration programs or hospitals meaning that they are receiv- ing services in general population programs and hospitals. It is important for all social workers to recognize that those who served in the military may face challenges due to that military service. I will provide an overview of how loss and grieving may be conceptualized by a military veteran and then apply these to Wesley’s case. Although the losses of functioning and relationships later in life are important points for us to consider, it is important to see these areas within the context of how the military experience may influence some military veterans’ perspectives.

The Veterans Administration (VA) has conducted extensive research over the decades to examine the health care concerns and needs of the aging veteran population while assessing the impact of military service on health (Chatterjee et al., 2009). The VA has embraced integrated care through the concept of the patient-centered medical home and has integrated aging as an aspect of diversity (Karel, Gatz, & Smyer, 2012). Integrated care allows access to mental health services within primary care settings. The veteran population has higher levels of physical and/or mental health symptoms than the typical civilian aging population (Rubin, Weiss, & Coll, 2012).

The biopsychosocial approach to the care of the aging veteran is a ben- eficial approach to use, particularly with aging veterans, as this approach considers the biological, social, psychological, and the environmental aspects of the individual. This means that the clinician must work collabora- tively with other providers to ensure comprehensive care. Clinicians need to be aware of the impact of aging on all of these spheres and then consider the influence of military culture as an overlay to all of it when working with veterans. At its most basic level, military culture places weight on discipline and hierarchy and prioritizes the group over the individual (Munson & Daley, 2013). It uses specific rituals and symbols to convey important mean- ings and transitions (Rubin et al., 2012). It also promotes stoicism, deperson- alization, and adheres to, in the words of General Douglas McArthur, “Duty, Honor, Country.”

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Case Presentation

Relevant History

Wesley Long was a 92-year old retired car mechanic and gas station owner. He has lived with his wife, Betty, now a retired nurse, for nearly 65 years on the family farm. They met right after World War II where Wesley served in the Army as an airplane mechanic. While in the army, he lost his pinky finger while working on an engine. He never spoke of the cause of the injury to his hand or of his military experience really at all. He preferred to immerse himself in his work. Beyond the hand injury, he had enjoyed good health until he was 58 when he developed diabetes and hypertension. The condi- tions worsened in his later years as he developed kidney disease. He became dependent on dialysis due to advanced kidney disease. He never complained about his condition although the doctors reported that the neuropathic pain can be considerable. Wesley faced the amputation of his leg because of the progression of his disease, was on dialysis, wheelchair dependent, and had declining vision; his prognosis was bleak. The doctors felt he really did not have much time left. Betty, ever the nurse, was glad to take on the role of care- giver to assist Wesley, but Wesley became withdrawn and spoke only when asked a question.

Meeting Wesley

The work with Wesley began at his home where I met him with his wife. They had seven children. Four lived within the state; one lived on the same farm but about a half-mile away. The other three children died in childhood and early adulthood; one died in a car accident and the other two died from congenital medical conditions. I immediately sensed the stoicism in Wesley. His bright blue eyes focused on me when he respectfully answered my questions, but it was clear he did not like being questioned and he quickly averted his gaze. Betty felt the heaviness in the air and excused herself to make us tea and give Wesley and me chance to speak alone. Generally, Betty seemed to prefer to remain in the kitchen when we spoke to give us privacy, but was clear that she needed attention as well to help her cope with her husband’s condition. This would be addressed after I started to work with Wesley.

I opened the interview with simple chatting as I slowly engaged with Wesley to add to the psychosocial interview that the nurse had started. Given his age, the home health agency encouraged us to address questions about military service with these clients: it seemed most appropriate when I saw the service medal framed on his living room wall. Although it was not in that first visit, but rather late in the third visit, I asked again about his military expe- rience when he seemed more ready to talk. This time, he paused for a long period before he began to talk about his experience. Gentle tears began to flow as he reminisced about his military service and finally shared how his best friend died in the war. Bob was shot down in his plane and subsequently died. Wesley quietly said, “I saw the plane crash. It was then I caught my finger in the engine I was working on and amputated my pinky finger.” Wesley’s face

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became grief-stricken and in a very low and halting manner he said, “I saw Bob die that day. . . .” He gently pounded on his leg saying, “When they take this leg, it will be like losing my finger and Bob all over again.” He admitted that he was having nightmares of the artillery exploding. He was afraid to share the story with his “sweet and loving” wife. In fact, he never talked to people outside of other veterans about his experiences; he said, “You cannot understand unless you’ve been there.”

Subsequent visits found Wesley increasingly despondent. He was now using oxygen. He knew he only had a few weeks to live. He did want to die at home. He seemed more agitated; he wanted to stop the dialysis treatments because it meant a 120-mile round trip to the closest dialysis center three times a week. He was concerned about the toll these trips placed on Betty. In the final weeks, he was sleeping more, and eating less. With the termination of dialysis, Wesley’s loss of energy was quite noticeable. When I would visit, we would reminisce about his military days and his life with Betty as best he could; he did not want to discuss his impending death. He felt death was a fact of life and he could do nothing about it. He did invite Betty to join our sessions to share some of the learnings he had about his military experiences and how it impacted his life and marriage. He brightened only when he spoke of his children and mentioned that he had been dreaming of the children who died many years before. He said those dreams were replacing the nightmares of his military time he was having a few weeks earlier. Betty was by his side when I left him the last day; she called me early the next morning to tell me Wesley had died during the night.

Discussion of End-of-Life, Terminal Illness, and Military Service

The recognition of Wesley’s role as a military veteran was pivotal to working with him and his wife. Issues of his military service came to the forefront as his current losses in functioning seemed to recapitulate the past traumatic loss of his best friend in WWII and his own physical loss of his finger. Research has revealed that PTSD is often underdiagnosed in WWII veterans and that stress- ors that appear in later life may exacerbate the condition (Bonwick & Morris, 1996) or lead to a late-onset stress symptomatology (LOSS), a phenomenon among older veterans that Davison et al. describe as “having (a) experienced highly stressful combat events in early adulthood; (b) functioned successfully throughout their lives, with no chronic stress-related disorders; but (c) begin to register increased combat-related thoughts, feelings, reminiscences, memo- ries, or symptoms commensurate with the changes and challenges of aging, sometimes decades after their combat experiences” (2006, p.87). Furthermore, aging veterans may have either late-onset PTSD or have been living with PTSD for the past 50 years or longer following combat. For others, the symptoms of PTSD may increase with age. The VA has recognized that having medical problems and feeling not as strong as the veteran used to be also can increase symptoms (www.ptsd.va.gov/public/pages/ptsd-older-vets.asp).

Wesley never had a diagnosis of PTSD on any of his military or health records and despite occasional “bad dreams” as he called them, he never sought treatment. His health was clearly declining with the progression of disease.

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The loss of functioning was limiting his independence and in response, he was becoming withdrawn and despondent, showing signs of depression.

My understanding of military culture, much like understanding any other cultural perspective, facilitated the work with Wesley. Wesley chose to not speak of his military experience over the years most likely for several rea- sons. First, the duty to serve the country but not to stand apart from comrades with any special need is a critical part of military cultural norms; second, the trauma he suffered in seeing his best friend die in wartime remained influen- tial in silencing him. Stoicism is a characteristic of many of the WWII veterans. The VA has found that veterans with osteoarthritis of the knee and/or hip, between the ages of 70 and 79 are more likely than younger counterparts to suffer in silence through pain caused by medical conditions or refuse medica- tion (Appelt, Burant, Siminoff, Kwoh, & Ibrahim, 2007). This was evidenced in Wesley’s lack of expression of pain in response to his much compromised physical condition. Wesley’s early resistance to being interviewed and his begrudging cooperation were clearly self-protective to deter discussion of his painful past but also due to a culture of privacy and need to avoid individual recognition for his past. This forces clinicians to be more persistent, yet respect- ful, in addressing both physical and mental pain treatment and management.

INTERVENTIONS

The work with Wesley was focused on his end of life issues as well as his trauma history. Like many trauma survivors, he suppressed and avoided dis- cussion of the traumatic event as a way to cope with the trauma. The acknowl- edgment of Wesley’s status as veteran was key to his care. The Military History Checklist (Department of Veteran Affairs, 2014) assists non-VA programs and organizations to identify veterans in their client populations to evaluate the impact of the military experience and determine if there are benefits to which the veteran and surviving dependents may be entitled. Questions included are: (1) Did you (or your spouse or family member) serve in the military?; (2)  In which branch of the military did you serve?; (3) In which war era or period of service did you serve?; (4) Overall how do you view your experience in the military?; (5) Would you like your hospice staff/volunteer to have mili- tary experience, if available?; (6) Are you enrolled in VA?; (6a) Do you receive any VA benefits?; (6b) Do you have a service connected condition?; (6c) Do you get your medications from the VA?; and (6d/6e) What is the name of your VA facility or VA provider?

Interventions with the older veteran, as with many of this age group, may find the client holding a more positive outlook or response pattern report- ing, “Everything is fine.” Sherwood, Shimel, Stolz, & Sherwood (2003) suggest that more direct questions such as “Do you still think about the war and feel sad?” are more helpful in assessing the client’s actual well-being. The direct question communicates that the worker is ready to discuss military service. The worker can follow-up with a question such as “What do you tend to think about?” and “How much have you talked about your experiences with other people?” If we as clinicians avoid the discussion of military history, we might consider addressing our own issues of countertransference. This issue

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of countertransference may cause clinicians uncertainty in exploring military trauma. Supervision allows the therapist to process and clarify the therapist’s reactions to the horror, pain, and terror that the client may discuss; this may help the therapist stay more attuned to the client’s needs (Sherwood et al., 2003).

With a client like Wesley, the goals of intervention would be to discuss his trauma history, reduce the psychological symptoms which may be exac- erbated by his physical symptoms, and use case management to connect him and his wife with concrete services, as needed (Sherwood et al., 2003). Other interventions that could be considered, as illustrated in the case of Wesley, would be individual therapy and/or couples therapy. Family therapy could be considered if the situation called for it. Once Wesley had the opportunity to discuss his feelings related to his military loss and how it impacted his life, he was ready to include his wife in our discussion. This allowed him to dis- cuss and grieve opportunities that he felt they missed because of his fears and anger. Using the LR technique, we looked back at his life to address his trauma memories and unresolved grief, resentments, and/or remorse (Sherwood et al., 2003). He saw how his anger redoubled with the death of each child. He wanted to apologize to his wife for being “less than the man he wanted to be” with her.

Individual treatment for Wesley focused on treating the trauma-related symptoms. Sherwood et al. (2003) note that anxiety management training (AMT), stress inoculation training (SIT), eye movement desensitization and reprocessing (EMDR), and cognitive behavioral therapy (CBT) are possible interventions to be considered. In light of Wesley’s terminal condition, indi- vidual counseling, CBT techniques, and relaxation techniques seemed to be the best course of action for Wesley. Close contact with the rest of the health care team was also very important so we all understood current care needs and prognosis. Following Wesley’s death, we came together as a team to pro- cess the care and how we handled the death. We read a letter that Betty wrote to us. She closed her letter with “Thank you for all of your wonderful care of Wesley. I want to particularly thank you for giving me the chance to truly know and better understand my husband.”

SUMMARY

Later adulthood is filled with a variety of losses but provides opportunity for growth in self-reflection and reinvention. This phase of life brings a gradual release from many of the daily demands of work and family, depending upon one’s resources and health, and the chance to invent a new structure to life. There is more individuation at this phase of life than during any other. Thus, although older adults have many issues in common they also have many dif- ferences from one another, having lived long and different lives.

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Social support emerges as one of the most important factors in mitigating the negative impact of loss and contributing to resilience. However, it is the older adult’s perception of this support that determines its meaning- fulness and whether the support enables the older adult to derive comfort. New  research (Ghesquiere, 2014) validates the importance of social support networks in engaging older adults in effective care for complicated grief. Older adults attempted to obtain help with their grieving process from a variety of individuals, including family, friends, physicians, grief groups, and men- tal health professionals until they found a treatment that they felt met their needs (Ghesquiere, 2014). One’s social network helped to shape older adults’ support-seeking behavior. Thus, it is essential that older adults consciously work to maintain robust social relationships.

Increasing longevity as well as increasing numbers of baby boomers who are becoming seniors may be influencing the growth of the Positive Aging movement. This movement urges seniors to use their wisdom, experience, and passion to reinvent themselves beyond midlife. Simultaneously, death cafes have become popular in many urban areas and the death-with-dignity move- ment has taken hold across the United States. Aging and death have seemingly become more acceptable as topics of conversation.

Despite the major health challenges that shape how older adults man- age their multiple losses, potentially leading to complicated mourning, some research demonstrates that older adults appear to rate their life experiences as more positive than do younger adults (Schryer & Ross, 2014). A classic study measured grief responses of widows and widowers of different age groups over the first year of bereavement and found that older widows and widowers saw themselves as adjusting better to their loss and experienced less depres- sion and anxiety than other age groups. Another recent study (Foley, Timonen, & Hardiman, 2014) found that although all participants struggled between fight- ing and accepting ALS, older adults (70+) were more accepting of this life- threatening disease and of death than were younger and midlife participants. Seniors may actually adapt and cope with severe stressors with less depres- sion than younger adults.

DISCUSSION QUESTIONS

1. Using the vignette at the beginning of this chapter and the reading on the older veteran at the end, how might you as a practitioner intervene with each of these older adults using the dual process model (DPM; loss orienta- tion/restoration orientation) or interventions not used by the practitioners in these cases? Describe what theories might inform your work other than the DPM.

2. What are the steps you would take if you were assigned an older adult who was on hospice care?

3. If you were assigned an older adult with multiple losses, what might you do to ameliorate complicated mourning?

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Conclusions

We began with the premise that the destabilizing force of loss is an inevitable part of human existence and lies at the heart of life and growth. We also rec- ognized that some grievers mourn for the rest of their lives and do not neces- sarily grow from loss. Still, research and clinical experience reassure us that most individuals cope with the distress of loss and learn lessons of empathy and resilience along with knowledge of their ability to survive deep pain. We believe that people can process loss more readily when they talk with someone who is supportive, calm, and nonjudgmental. We hope that by reflecting on the ideas and information in this text, the reader feels more competent to help in this way.

Some readers may find our view of maturational losses to be over- reaching in seemingly asserting that loss is around every developmental cor- ner. Although we do believe that all change involves loss, we do not hold that all maturational losses must be actively mourned. Simply, they deserve recog- nition as destabilizing and potentially growth-producing events. When people recognize the great or small losses that affect them, they are better able to rec- ognize how irritation, sadness, hypervigilance, or other emotions are related to the loss and to cope more effectively because they recognize the source.

In this chapter, we review the conceptual underpinnings of the newer grief theories we introduced in the first chapter. We believe these concepts provide guidance for the important work to be done with grievers. We sin- cerely hope that this text has helped the reader feel confident in their ability to accompany grievers in their journey through grief.

OBJECTIVES

After reading this chapter the reader will be able to:

■ Synthesize literature about postmodern grief theory. ■ Understand how maturational losses fit within the concept of disenfran- chised grief concepts.

■ Be aware of the intersections of trauma and grief theory. ■ Deliberate about changes in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) related to diagnosis and grief.

■ Identify forms of self-care that support good practice.

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ACCOMPANYING THE BEREAVED IN THEIR GRIEF

Many students feel hesitant about their ability to work with bereaved people and somehow believe they must remove a client’s sadness or, in some other way, work magic. In truth, sadness is a normal part of human existence and a customary response to loss. Losses related to attachment, to status and resources, and to meaning or valued goals inspire pain and likely contribute to the high rate of diagnosed depression in the Western world (Horowitz & Wakefield, 2007). Yet, these losses and concomitant feelings are common across all cultures and throughout human history. We trust that most bereaved peo- ple will be helped by the practitioner, friend, or family member who has the courage and compassion to sit with them calmly and truly listen to their sto- ries and feelings. A brief word about “calmly”: a listener’s rising anxiety (due to pressure to make magic happen or a belief they must do something) compro- mises calm listening. Listening calmly means gently probing the bereaved’s thoughts, feelings and actions and listening with intentness and quiet.

It is very important that supporters actively help the bereaved tell the stories of their losses and what they mean to them. This is the opposite of say- ing “I’m here if you want to talk”—an offer grievers seldom mobilize to avail themselves of. Good support entails asking questions about what led up to the death, what happened during the death (and how that affected the bereaved), how the bereaved was thinking and feeling immediately after the death, how that differs from current feelings, and what fears the person has about moving through life without the loved one. Although these questions are geared to a death loss, they are easily adapted to other types of loss. Most important, these questions should be posed gently and one must respond with interest, empa- thy, and patience. Asking the bereaved person specific questions, rather than offering a vague invitation “to talk,” provides both guidance and permission to begin to talk. There is no magic here, but over time, the bereaved usually are able to make meaning of the loss and create a story with a narrative line that allows them to feel that the experience is understood and contained.

Of course, losses can threaten long-term well-being and may evoke intense sadness. The DSM-5 is clear that if grieving people begin to have extreme symptoms that meet the criteria for major depressive disorder, they should be referred for psychiatric evaluation. Yet, the removal of the “bereavement exclusion” and the decision not to include prolonged or complicated grief as diagnoses in the DSM-5 have left clinicians with more questions than answers about when loss responses and grief require psychiatric treatment rather than supportive counseling. Wakefield (2013) has neatly explained the history and rationale of DSM-5’s removal of the bereavement exclusion and the great dif- ficulty it creates for grievers and their caregivers. Although the bereavement exclusion had long been criticized as too narrow (divorce and job loss can pro- voke depressive symptoms, too) and also too short (the 2-month bereavement exclusion of DSM-III and DSM-IV does not recognize that most grievers expe- rience such symptoms for at least 6–12 months), the removal of the exclusion has led to even greater concerns. These can be summed up in Allen Frances’ words (Frances is the editor of DSM–IV TR): “Many millions of people with normal grief, gluttony, distractibility, worries, reactions to stress, the temper tantrums of childhood, the forgetting of old age, and ‘behavioral addictions’

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will soon be mislabeled as psychiatrically sick” (italics added; Frances, 2010). Indeed, Wakefield (2013) expresses similar concerns that we share: Normal grievers may be diagnosed and medicated rather than supported in their grief.

The decision not to include complicated grief or prolonged grief in the DSM-5 also causes consternation for those who provide grief therapy. Nearly all clinicians recognize the constellation of symptoms described as prolonged grief (Holland, Neimeyer, Boelen, & Prigerson, 2009) or complicated grief (Shear, 2015) and the tendency of these mourners to remain stuck in their grief, often with intrusive thoughts, intense yearning for the deceased, and ongoing avoidance of discussion of the death or the deceased. The International Classification of Diseases 11 (ICD-11) purportedly will include either compli- cated grief or prolonged grief in recognition that mourners benefit from diag- nosis and treatment when they experience on-going debilitating grief. The continuing tension between avoiding pathologizing normal grief and allow- ing treatment for debilitating grief ensures that these diagnostic issues will remain thorny.

Structured approaches to treating these mourners—using exposure therapies (especially telling the story of the death) and cognitive behavioral methods to reappraise negative cognitions—have been empirically tested and exhibit good efficacy using many of the interventions discussed previously in this text (Bryant et al., 2014; Shear, Boelen, & Neimeyer, 2011). Shear (2015) identified the core components of such treatment as (a) establishing the lay of the land; (b) promoting self-regulation; (c) building connections; (d) set- ting aspirational goals; (e) revisiting the world; (f) storytelling; and (g) using memory.

Grief is painful, messy, and temporarily debilitating—and the myth that the pain can be avoided is seductive. Yet, many of the lessons of grief have to do with what one is able to bear and live through—lessons only learned when one must do so. Our inclination is to help grievers attend to their physical well-being, to allow for as much emotional expression as fits the individual within a dual-process model context, and to support grievers in coping with their pain. If a griever is suicidal, still quite debilitated after 4 to 6 months, has strong feelings of worthlessness, or is unable to begin to eat and sleep more normally after several weeks, then a referral for psychiatric evaluation makes sense.

MATURATIONAL LOSSES AS DISENFRANCHISED LOSSES

We have demonstrated that children and adults experience various matura- tional losses, some as a direct result of normal growth and aging, and some related indirectly to the maturational stage an individual inhabits. These losses are common in each age group but often receive little support from others precisely because they are considered “fairly normal.” In effect, these losses and the grief that individuals experience are not validated by society in the ways that allow people to grieve losses deemed legitimate (worthy of sympa- thy or support). Although not included in Doka’s (1989, 2002) five categories of disenfranchised loss, we assert that many maturational losses are indeed disenfranchised.

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Many people experience disenfranchised maturational loss when expected developmental achievements are not met. For example, a significant percentage of the current generation of emerging adults has not been able to establish independent households. We view this delay of developmental achievement as a form of maturational (and disenfranchised) loss. These two categories of maturational loss—loss due to new developmental milestones attained and loss due to nonattainment of expected achievements—both cause a low level of sadness and irritation that can be managed better if recognized as sequelae of a loss.

One of the first losses due to new developmental milestones attained is the loss of the safe uterine environment from which all humans are thrust without intent or control (something Otto Rank wrote of in 1929 in The Trauma of Birth). As infants age, they lose the total, unconditional care of their parent/s. Most children then move to school environments where they are judged, sometimes for the first time in their lives. None of these are viewed as losses requiring support from others, yet they do seem to entail experiences of (unrecognized and disenfranchised) loss.

Other maturational losses may be recognized, but are disenfranchised nonetheless. For example, young adults who transition from depending on their family of origin for support to independent living seldom have support for the losses they experience as they create a new life. In young adulthood, the loss of a romantic relationship is often not validated by friends and family, who see young adults as having many more opportunities for relationships in the future. Young adults often grieve silently (if sometimes sullenly) as those around them do not understand the depth of their sadness.

Adults who become parents often do not recognize the loss their relation- ship endures. A new child demands energy and attention the couple used to give each other. The birth of a child is in most cases a happy event, and is nor- matively defined as such. As a result, family, friends, and perhaps the couple themselves are unable to anticipate and then recognize the sadness and grief they may experience as they “lose” each other. Alternatively, when a woman suffers a miscarriage, friends and family often say “Don’t worry, there proba- bly was something wrong with it” or “You’ll have many opportunities to have other children,” thereby disenfranchising the loss and indicating that support is unnecessary.

Loss of employment is also seldom validated as a loss, yet as decades of research shows, this can be experienced as a severe loss, particularly in midlife when it interferes with the basic developmental task of generativity and is therefore a maturational loss of the second type: nonattainment of an expected developmental achievement. Further, no societal ritual recognizes this loss or provides a socially sanctioned time for grieving and recovery. This is complicated by expectations that unemployed adults be continuously motivated and efficient in seeking new employment at a time when they feel a sense of shame and self-doubt. The reading in Chapter 8 by Kudu captures some of the ways the disenfranchised maturational loss of job transition can affect self-concepts.

At some point, adults may choose to move from the home they created earlier. For some, this move may be liberating, even joyous because they are

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moving to a place that permits a more satisfying lifestyle. But for others, it represents a severe loss as they cope with limited financial resources and/ or ill health. This loss often goes unrecognized though the loss of a home may entail losing proximity to lifelong friends and the familiar environment that is also a powerful symbol of achievement and trigger for important memories.

Because they have already suffered losses and been resilient, older adults often are understood by themselves and others as able to weather any loss (of spouse, of health, of home). Individuals may disenfranchise their own grief and have little patience with their grief. Yet, these cumulative losses, espe- cially if not processed due to self-disenfranchisement, may actually lead to greater pain.

IMPORTANCE OF THE DUAL PROCESS MODEL OF COPING WITH BEREAVEMENT

In the Introduction, we wrote of the importance of understanding the dual process model of grief (Stroebe & Schut, 1999, 2010) in which the bereaved oscillate between two modes of functioning while adapting to loss. In one mode, the bereaved yearn and search for the absent person or lost object while focusing on the loss (loss orientation [LO]). In the other mode, grievers focus on rebuilding their lives by engaging in new relationships, activities, and other distractions that move them away from active grieving (restoration orienta- tion [RO]). This cycling allows needed time for both processing the loss and for necessary respite. In the early chapters of this text, we noted how chil- dren utilize dual process, rapidly moving back and forth between LO and RO. Although adults are often uncomfortable with children’s responses to death, children model well how to move between the two states without judgment or second-guessing the process that will help them heal.

Adults often have a much more difficult time permitting this movement between active grieving and distraction or looking forward. We believe this is a place where grief theories (and therapists) have been problematic: as men- tioned in the first chapter, many believed the “grief hypothesis” and believed that all therapeutic work after bereavement must stay focused on active grief work (focus on LO). We see, however, that clients benefit when the grief coun- selor is able to model and give permission to focus on both the grief and the rest of life, tears and distractions.

Work with grievers should always include attention to RO in measures that meet the client’s needs. A good grief practitioner understands that the movement between active expression of grief and engagement with the other parts of life allows the griever to find new balance. Whatever the loss—that of the mother in Chapter 2 who lost her septuplets, or Clare’s divorce related in Chapter 8, or even the losses of hospice workers discussed by Brooks in Chapter  10)—grievers need to find a new balance, to “re-learn the world” (Attig, 1996, 2015) and this oscillation process may be a key part of the process that enables finding that new balance. Using the dual process model as an intervention strategy, a practitioner might work with the griever to develop a more balanced coping strategy by guiding active grievers to focus on

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restoration and to guide those who focus only on the future to consider some of the events, feelings, and thoughts of the past before and during the loss.

IMPORTANCE OF CONTINUING BONDS

Continuing Bonds by Klass, Silver, and Nickman (1996) was a landmark con- tribution to grief theory. They clearly defined continuing the relationship with the deceased as a principal component of grief work, effectively chal- lenging the idea that disengaging from the lost loved one was the function of grief and mourning. In fact, Klass et al. (1996) view continuing bonds as a resource to enrich functioning in the present and future. Unlike older Freudian conceptualizations of grieving, their understanding posits no zero-sum game with regard to the emotional energy available for invest- ment; the bereaved can invest in new relationships while still grieving. Derived from this is the helpful idea that the relationship with the deceased changes over time; the deceased may actually be viewed as helping to support the bereaved in building new relationships. This is comforting to many bereaved adults who previously thought they had to “let go” of one relationship prior to forming a new one. As with many other findings, the importance of continuing bonds challenges the necessity of “closure” in the experience of grief.

Unlike death losses where the continuing bond can be enhanced with linking objects (Volkan, 1985) and other memories, parents who lose a poten- tial baby prior to birth are stymied in maintaining and continuing their rela- tionship. They fear that others will not recognize their loss of one relationship when another (a new pregnancy and healthy baby) comes along. They often need help affirming the ongoing relationship to the baby they dreamed of hav- ing (and lost) and differentiating it from a new pregnancy and/or baby. Here, work with a bereaved couple is enhanced by acknowledging the continuing bond and differentiating it from any new pregnancy. This allows the couple to fully embrace the new relationship.

As described in the chapter on Tweens and Teens, the practice of continu- ing bonds is also challenging in the loss of a relationship. When a love rela- tionship ends, the person experiencing the loss often wishes to maintain the relationship with little change. Part of the work of acknowledging a loss is the transition into a new type of relationship that reflects the change in the bond. Thus, the continued bond is one of memory rather than on-going relationship with the ex-lover. The changed nature of the bond is the basis for the continu- ing bond. Foster children struggle somewhat similarly with continuing bonds with birth families and foster families; they must determine what bonds with family of origin can safely be maintained and which must end with a revised bond. In Chapter 7, Shdaimah shows how women leaving prostitution may feel a continuing bond with the work they used to do and how they may hold on to that bond by helping others leave prostitution or by maintaining connec- tions with the staff who helped them quit. The bonds are transformed, but the “lost” entity is not forgotten.

As people move through reinvention, they may also maintain continued bonds with their former professions, work colleagues, and work sites. Yet,

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the bond must change and the new relationship with paid work must evolve. Nearly everyone knows someone who stayed active in their work for too long, failing to accept the loss and transform their bonds to work ties in time. The transformation of bonds is a critical aspect of continuing bonds.

MEANING-MAKING AS A PROCESS OF GROWTH

Grief and loss, although uncomfortable, are part of human existence; likewise, humans inevitably try to make meaning of their world. Neimeyer, Prigerson, and Davies (2002) argue that “human beings seek meaning in mourning and do so by struggling to construct a coherent account of their bereavement that preserves a sense of continuity with who they have been while also integrat- ing the reality of the changed world into their conception of who they must be now” (pp. 235, 236). Hogan & Schmidt (2002) tested a “grief to personal growth model” and suggest that the bereaved are transformed by their experi- ence with loss when they are propelled to revise their worldview and create a new identity. From the experiences of parents who have lost a child, teens who have lost a friend, and bereaved adults who have lost a life partner, it seems clear that meaning-making is a key to surviving (and growing) from the loss. Indeed, it is possible that the ability to make meaning differentiates those who grow from grief from those who remain immobilized.

Efforts to preserve a coherent self-narrative are disrupted by the loss of significant others upon whom “our life stories depend” (Neimeyer et al., 2002, p. 239). When the bereaved individual creates a story where the loss has meaning, she or he can see how to move forward with a revised narrative of how to function in the world without their loved one. Going on being—merely surviving—propels the bereaved to keep putting one foot in front of the other, and keep retelling the story until the past is again woven with the future. The loss of significant others who provided a particular “fund of shared memo- ries” (Neimeyer et al., p. 239) may prompt the bereaved to “relearn the self” and “relearn the world” (Attig, 1996, 2015). As illustrated in the experience of parents who lose a child (Chapters 2 and 3), teens who lose a friend through murder (Chapter 5), and bereaved partners and spouses (Chapters 7 and 9), commitments to “living with a new intent”—to appreciate life more and to make each day count—issue from meaning-making.

Joyce Carol Oates and Meghan O’Rourke (2011) exchanged thoughts about what led them to write memoirs about their grief, and each acknowl- edged that their writing evolved as a way to create order out of chaos, to “slog through” grief, and to “attempt comprehension.” They bemoan pro- fessionals who put time limits on grief and discuss how merely surviving is what allows the bereaved to move through grief eventually. As we hope to have done in this text, they capture the individual and contextual quali- ties of grief and show how “stages of grief” are unlikely to exist in any universal way.

Practitioners cannot ever “make meaning” for their clients. After help- ing clients tell their stories of bereavement, they may help by asking a deeper set of questions. Questions such as “Where did you find surprise sources of strength?”; “What untapped strengths have you discovered?”; and “How has

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this loss experience changed your life?” can help clients to make meaning from their experiences. Practitioners can help clients who have suffered disenfran- chised losses by validating their grief. Bereaved clients may find that loss is the impetus to reassess their spiritual and/or emotional lives while also reeval- uating their priorities in a way that makes meaning and leads to a new self-image. Although we would hesitate to ask most grievers if their loss has a silver lining, helping them identify what remains good (or improved) in life is often an important aspect of meaning making.

Among the best predictors of eventual adaptation to a loss is the struggle to make sense of it and the discovery of some “life lesson in the loss” (Neimeyer et al., 2002, p. 240). Walter’s research (2003) with bereaved widows, widow- ers, and partners found that the participants who made meaning from their experiences were able to move forward in their lives. The degree of frustration increases for both individuals and families who are unable to redefine the loss and tend to focus on the “negatives of the situation and wish that things were different than they are” (Neimeyer et al., 2002, p. 248).

TRAUMA AND GRIEF

When the bereaved have experienced trauma, loss may not seem to elicit grief. People exposed to trauma, especially in childhood, tend to stifle affect as a result. Trauma from adverse childhood events (ACE), particularly if paired with trauma related to a recent loss, may interact in ways that have similari- ties and differences from typical grief trajectories. The responses to the earlier trauma may mask some of the response to grief.

Trauma is the result of events by which “the victim is rendered helpless by overwhelming force” (Herman, 1997, p. 33). Earlier versions of the DSM focused on trauma as resulting from life-threatening events that provoked symptoms of re-experiencing, avoidance and hyperarousal in their wake (though not for everyone who had experienced such an event). The DSM-5 broadens the type of event that provokes trauma (sexual violence has been added) and the criteria now include avoidance, re-experiencing, persistent negative change in mood and cognition, and arousal and reactivity.

Recent research indicates that post-traumatic stress disorder (PTSD) and prolonged grief disorder (PGD) have different symptom profiles that some- times overlap after renewed exposure to trauma and loss. In research with Mandaean refugees and asylum seekers in Australia, Nickerson et al. (2014) showed that traumatized individuals who had also experienced recent loss had recognizable clusters of symptoms. Their sample included 16% who combined PTSD/PGD symptoms (primarily psychogenic amnesia, restricted affect, and loss of meaning), 25% who exhibited primarily symptoms of PTSD (intrusive memories, avoidance of thoughts/activities, and hyperarousal and less restricted affect), 17% with symptoms primarily of PGD (longing and yearning, bitterness, and difficulty accepting the death, with some intrusive memories and other discrete PTSD symptoms)—and 43% were asymptomatic and classified as resilient (an additional 9% could not be classified at all). To validly and reliably distinguish PGD from PTSD this way among previously traumatized individuals exposed to further traumatic loss would be extremely useful for assuring efficacious treatment.

11 Conclusions 297

In another study considering how childhood trauma and adult trauma may interact, Fossion et al. (2013) explored how “Formerly Hidden Children” (FHC) in World War II (WWII) Belgium coped with loss in adulthood. FHC’s were Jewish children hidden during WWII and living under persistent, life- threatening circumstances. Fossion et al. compared FHC who were currently bereaved adults with bereaved adults who had also lived in Belgium as chil- dren during WWII (but not under threat) and found that the FHC group had decreased resilience compared to the control group. They posit that the early trauma makes adults more vulnerable to later life stressors and bereavements. They suggest that reinforcing resilience after each trauma or loss and helping individuals develop a renewed sense of coherence would likely protect resil- ience over time.

The typical symptoms of PTSD (dissociative symptoms, numbing, and hypervigilance) may mask typical grief responses making it difficult to distin- guish what treatment is needed for the trauma and what for the grief. Yet, a reassuring aspect of this tangle is that both trauma and complex grief share an intervention strategy: Successful treatments for both encourage the individual to tell a repeated and coherent story of the loss and/or trauma (exposure). Combining this with psychoeducation to help adjust expectations about grief and trauma is part of the work as well. Developing the coherent story helps individuals “relearn the world” (Attig, 2015) and may promote meaning- making that helps them develop a sense that the world is predictable and fairly safe again, a necessity for recovery from trauma in its many forms.

We believe that the Winnicottian notion of the safe holding environment (Winnicott, 1965) is important here. For Winnicott, the holding environment consists of fundamental “caregiving activities and processes that facilitate growth and development” during infancy, and which is repeated in therapeu- tic environments (Winnicott, 1965, p. 33). Therapeutic holding environments may provide the bereaved with the sense of safety necessary to move back and forth between the LO and RO of the dual process model. When clinicians provide a space of safety and nurture, individuals may be most able to process their trauma and grief

GRIEF COUNSELING EFFICACY AND HIDDEN LOSSES

The field of grief counseling is undergoing critical examination. Some researchers question its validity (Currier, Holland, & Neimeyer, 2007; Jordan & Neimeyer, 2003) while others (Larson & Hoyt, 2007) challenge such pessimis- tic conclusions. At the 30th Annual Conference of the Association for Death Education and Counseling in April/May of 2008, during the panel presen- tation “Research that Matters 2008: Does Grief Counseling Work—Yet?,” Currier et al. (2007) argued that there is not much evidence that grief counsel- ing makes a difference. However, the lively discussion that ensued made clear that research had failed to consider the client/worker relationship. Because variables of empathy, positive regard and authenticity have been so critical in understanding positive outcomes in research of other therapeutic methods (Lambert & Barley, 2002), it is logical that research on grief counseling should proceed similarly. We suspect that future research of this sort will demonstrate

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the vital importance of the Winnicottian holding environment as a facilitator of therapeutic grief work.

The clinician’s ability to bear witness to the bereaved’s pain is another critical feature of intervention with individuals coping with loss. Again, this requires that practitioners exude a calm, confident presence, implicitly shar- ing the hope and expectation that the bereaved will feel better by telling (and retelling) their painful stories of loss and grief. It also comforts and helps when the clinician can help the bereaved discover ways to continue the relationship with the deceased (or affirm ways already found).

When grief is submerged due to trauma or because the bereaved has little support, other problems often appear. Although many individuals and families who come to therapy present with problems that seem to have little to do with bereavement, the source of these problems is often an unprocessed loss. For example, a family presented to C. A. Walter due to the 16-year-old son’s drug addiction; ultimately, this was traced to the death 10 years earlier of his sibling. When practitioners bear witness to a family’s story of a child’s death, they often see family members affected in different ways. Even disen- franchised maturational losses can sometimes spur anxiety and/or depression that may bring a client into a clinician’s office. In exploring the context for the anxiety or mood disorder, unrecognized but deeply felt losses often emerge as triggers for the current sense of discomfort.

GRIEF AND THE CLINICIAN: CAUTIONS

You Cannot Bypass Grief

Nothing readers learn from this text will change the way they experience grief. Many “experts” believe they can use knowledge to bypass painful phenomena as though to be forewarned is to be sufficiently forearmed. Grief does not work that way. Grief takes its time and feels as overwhelming for the expert as it does for anyone else. Just as trauma counselors cannot serve as their own ther- apists and need to be conscious about being “a healing counselor rather than a wounded healer” (Rudick, 2012), clinicians of all disciplinary backgrounds benefit from support (professional or personal) from someone not affected by the loss and able to intervene as we have described in this text. We coarsen life and demean our attachments whenever we expect grievers (ourselves included) to deny their own mourning.

Take Care of Yourself

We have included information for grievers about the importance of regular exercise, exposure to sunlight, proper nutrition (attending particularly to vitamins B6 and B12 and omega-3 and -6), relaxation and meditative prac- tices, spiritual supports, and close friendships. These elements of self-care are just as important for the caregiver, whether friend, family member or clinician (Rudick, 2012; Vachon, 2015).

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Vachon (2015) synthesizes years of research about self-care for those providing hospice and palliative care services. She asserts confidently that those who take care of themselves are more able to avoid burnout and com- passion fatigue. “Venting” about negative aspects of the job, living stoically with work-stress, and/or watching a lot of television or using substances are not good forms of self-care. Rather, Vachon encourages particular atten- tion to the pleasure and fulfillment one gets from extending compassion to others (“compassion satisfaction”) along with exercise and physical activ- ity, willingness to take time off, meditative and reflective practices, exquisite empathy with good boundaries, resilience, and spirituality as part of a good self-care plan.

When an airplane cabin decompresses, one must help oneself to the oxy- gen before helping others. Self-care is the oxygen of grief work. In grief work as in trauma work, we must help contain our clients’ grief and trauma, be fully with them in a nonanxious manner, and yet be enlivened rather than debilitated by this work. We ask you to care well for yourselves so that you can provide important care, treatment, and empathy to the grievers you meet along your way.

DISCUSSION QUESTIONS

1. If someone asked you what theories or concepts defined the work you do with grievers, what theories would you invoke? Why?

2. How do you typically feel when someone is “leaning” on you for comfort and care?

3. What is an example of compassion satisfaction from your own life? 4. What is your favorite self-care practice?

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References

Abeles, N., Victor, T. L., & Delano-Wood, L. (2004). The impact of an older adult’s death on the family. Professional Psychology: Research and Practice, 35(3), 234–239. doi:10.1037/0735-7028.35.3.234

Abrams, L. S., & Curran, L. (2007). Not just a middle-class affliction: Crafting a social work research agenda on postpartum depression. Health & Social Work, 32(4), 289–296.

ACOG Practice Bulletin, No. 77. (2007). Screening for fetal chromosomal abnormalities. Obstetrics & Gynecology, 109(1), 217–227.

Adler, J. M., Harmeling, L. H., & Walder-Biesanz, I. (2013). Narrative meaning making is associated with sudden gains in psychotherapy clients’ mental health under routine clinical conditions. Journal of Clinical and Consulting Psychology, 81, 839–845. doi:10.1037/a0033774

Ainsworth, M. D. (1969). Object relations, dependency, and attachment: A theoretical review of the infant-mother relationship. Child Development, 40, 969–1025.

Ainsworth, M. D. S. (1982). Attachment: Retrospect and prospect. In C. M. Parkes & J.  Stevenson-Hinde (Eds.), The place of attachments in human behavior (pp. 3–30). New York, NY: Basic Books.

Ainsworth, M. D. S., Blehar, M. C., Waters, E., & Wall, S. (1978). Patterns of attachment: A psychological study of the strange situation. Hillsdale, NJ: Erlbaum.

Alcoholics Anonymous Member Survey. (2011). Retrieved from http://www.aa.org/ assets/en_US/p-48_membershipsurvey.pdf

Amato, P. R. (2010). Research on divorce: Continuing trends and new developments. Journal of Marriage and Family, 72, 650–666. doi:10.1111/j.1741-3737.2010.00723.x

American Academy of Pediatrics: Committee on Psychosocial Aspects of Child and Family Health. (2000). The pediatrician and childhood bereavement. Pediatrics, 105, 445–447.

American Psychiatric Association (APA). (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM 5). Washington, DC: American Psychiatric Association.

Ammaniti, M., Tambelli, R., & Odorisio, F. (2013). Exploring maternal representa- tions during pregnancy in normal and at-risk samples: The use of the interview of maternal representations during pregnancy. Infant Mental Health Journal, 34(1), 1–10. doi:10.1002/imhj.21357

Anna, W. (2014, November 12). Are you suffering from . . . retired husband syndrome? Daily Mail, p. 19.

Anonymous. (2008). The “forgotten bereaved”: Grief over losing an adult sibling may go unacknowledged. Harvard Mental Health Letter, 25(3), 6.

Appelt, C., Burant, C., Siminoff, L., Kwoh, C., & Ibrahim, S. (2007). Arthritis-specific health beliefs related to aging among older male patients with knee and/or hip osteoarthritis. Journals of Gerontology Series A: Biological Sciences & Medical Sciences, 62A(2), 184–190.

Applegate, J. S., & Shapiro, J. R. (2005). Neurobiology for clinical social work: Theory and practice. New York, NY: W. W. Norton.

Grief and Loss Across the Lifespan302

Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55, 469–480. doi:10.1037//0003-066X.55.5.469

Arnett, J. J. (2004). Emerging adulthood: The winding road from the late teens through the twenties. New York, NY: Oxford University Press.

Arnett, J. J. (2007). Emerging adulthood: What is it, and what is it good for? Child Development Perspectives, 1, 68–73. doi:10.1111/j.1750-8606.2007.00015.x

Arnett, J. J. (2008). From “worm food” to “infinite bliss”: Emerging adults’ views of life  after death. Positive youth development and spirituality: From theory to research (pp. 231–243). Philadelphia, PA: Templeton Foundation.

Arnold, E. (2005). A voice of their own: Women moving into their fifties. Health Care for Women International, 26, 630–651. doi:10.1080/07399330500177014

Ashman, S. B., Dawson, G., & Panagiotides, H. (2008). Trajectories of maternal depres- sion over 7 years: Relations with child psychopathology and behavior and role of contextual risks. Development and Psychopathology, 20(1), 55–77. doi:10.1017/ S0954579408000035

Attig, T. (1996). How we grieve: Relearning the world. New York, NY: Oxford University Press.

Attig, T. (2001). Relearning the world: Making and finding meaning. In R. Neimeyer (Ed.), Meaning construction and the experience of loss (pp. 33–53). Washington, DC: American Psychological Association.

Attig, T. (2004). Disenfranchised grief revisited: Discounting hope and love. Omega: Journal of Death and Dying, 49(3), 197–215. doi:10.2190/P4TT-J3BF-KFDR-5JB1

Attig, T. (2015). Seeking wisdom about mortality, dying and bereavement. In J. M. Stillion & T. Attig (Eds.), Death, dying, and bereavement: Contemporary perspec- tives, institutions, and practices (pp. 1–16). New York, NY: Springer Publishing.

Avelin, P., Erlandsson, K., Hildingsson, I., & Rådestad, I. (2011). Swedish parents’ expe- riences of parenthood and the need for support to siblings when a baby is stillborn. Birth: Issues in Perinatal Care, 38(2), 150–158. doi:10.1111/j.1523-536X.2010.00457.x

Azaiza, F., Ron, P., & Tinsky-Roimi, T. (2011). Death and dying anxiety among bereaved and nonbereaved elderly parents. Death Studies, 35, 610–624. doi: 10.1080/07481187.2011.553325

Bachman, D. H., & Lind, R. F. (1997). Perinatal social work and the high risk obstetrics patient. Social Work in Health Care, 24(3/4), 3–19. doi:10.1300/J010v24n03_02

Bagnoli, A. (2003). Imagining the lost other: The experience of loss and the process of identity construction in young adults. Journal of Youth Studies, 6(2), 203–218. doi:10.1080/1367626032000110318

Balk, D. (2011). Adolescent development and bereavement: An introduction. Prevention Researcher, 18(3), 3–9.

Balk, D. E. (2001). College student bereavement, scholarship, and the university: A call  for  university engagement. Death Studies, 25, 67–84. doi:10.1080/074811801750058636

Balk, D. E., Walker, A., & Baker, A. (2010). Prevalence and severity of college student bereavement examined in a randomly selected sample. Death Studies, 34, 459–468. doi:10.1080/07481180903251810

Bankson, M. Z. (2010). Creative aging: Rethinking retirement and non-retirement in a chang- ing world. Woodstock, VT: Skylight Paths.

Barrera, M., D’Agostino, N. M., Tallett, S., Schneiderman, G., Spencer, L., & Jovcevska, V. (2007). Patterns of parental bereavement following the loss of a child and related factors. Omega: Journal of Death and Dying, 55(2), 145–167. doi:10.2190/OM.55.2.d

Barrett, R. K. (1996). Adolescents, homicidal violence, and death. In C. A. Corr & D. E. Balk (Eds.), Handbook of adolescent death and bereavement (pp. 42–64). New York, NY: Springer Publishing.

References 303

Basu, A. P. (2014). Early intervention after perinatal stroke: Opportunities and chal- lenges. Developmental Medicine & Child Neurology, 56, 516–520. doi:10.1111/ dmcn.12407

Batten, M., & Oltjenbruns, K. A. (1999). Adolescent sibling bereavement as a catalyst for spiritual development: A model for understanding. Death Studies, 23, 529–546. doi:10.1080/074811899200876

Baum, N. B. (2003). The male way of mourning divorce: When, what and how. Clinical Social Work Journal, 31, 37–50. doi:10.1023/A:1021462517875

Baumohl, J. (1986). On asylums, homes, and moral treatment: The case of the San Francisco home for the care of the inebriate, 1859–1870. Contemporary Drug Problems, 13, 395–445.

Baumohl, J. (2013). “Washingtonians.” In D. Fahey & J. Miller (Eds.), Encyclopedia of alcohol and drugs in North America: A historical encyclopedia (pp. 738–740). Santa Barbara, CA: ABC-CLIO.

Baumohl, J., Speiglman, R., Swartz, J., & Stahl, R. (2003). Substance abuse and welfare at the new century. Contemporary Drug Problems, 30, 501–537.

Baumrucker, S. (2002). Palliative care, burnout, and the pursuit of happiness. The American Journal of Hospice & Palliative Care, 19(3), 154–156.

Beardslee, W. R. (2013). Military and veteran family-centered preventive interven- tions and care: Making meaning of experiences over time. Clinical Child and Family Psychological Review, 16, 341–343. doi:10.1007s10567-013-0151-1

Beddoe, A. E., Paul Yang, C.-P., Kennedy, H. P., Weiss, S. J., & Lee, K. A. (2009). The effects of mindfulness-based yoga during pregnancy on maternal psychologi- cal and physical distress. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 38, 310–319. doi:10.1111/j.1552-6909.2009.01023.x

Begley, M., & Quale, E. (2007). The lived experience of adults bereaved by suicide: A phenomenological study. Crisis: The Journal of Crisis Intervention and Suicide Prevention, 28, 26–34. doi:10.1027/0227-5910.28.1.26

Bemister, T. B., Brooks, B. B., Dyck, R. H., & Kirton, A. (2014). Parent and family impact of raising a child with perinatal stroke. BMC Pediatrics, 14(182), 1–11. Retrieved from http://biomedcentral.com/147-2431/14/182

Bennett, K. M., Gibbons, K., & Mackenzie-Smith, S. (2010). Loss and restoration in later life: An examination of dual process model of coping with bereavement. Omega: Journal of Death and Dying, 61(4), 315–332. doi:10.2190/OM.61.4.d

Bennett, S. M., Litz, B. T., Sarnoff Lee, B., & Maguen, S. (2005). The scope and impact of perinatal loss: Current status and future directions. Professional Psychology: Research and Practice, 36(2), 180–187. doi:10.1037/0735-7028.36.2.180

Bent, K. N., & Magilvy, J. K. (2006). When a partner dies: Lesbian widows. Issues in Mental Health Nursing, 27, 447–459. doi:1080/01612840600599960

Berg, L., Rostila, M., Saarela, J., & Hjern, A. (2014). Parental death during child- hood and subsequent school performance. Pediatrics, 133, 682–689. doi:10.1542/ peds.2013-2771

Berger, P. L., & Luckmann, T. (1967). The social construction of reality. Garden City, NY: Anchor.

Bergman, K., Rubio, R. J., Green, J. J., & Padron, E. (2010). Gay men who become fathers via surrogacy: The transition to parenthood. Journal of GLBT Family Studies, 6, 111–141. doi:10.1080/15504281003704942

Berns, N. (2011). Closure: The rush to end grief and what it costs us. Philadelphia, PA: Temple University Press.

Bertman, S. (2011). Forward. In I. Renzenbrink (Ed.), Caregiver stress and staff support in illness, dying, and bereavement. New York, NY: Oxford Press.

Bertman, S. (2015). Using the arts and humanities with the dying, bereaved . . . and ourselves. In J. M. Stillion & T. Attig (Eds.), Death, dying, and bereavement:

Grief and Loss Across the Lifespan304

Contemporary perspectives, institutions, and practices (pp. 245–257). New York, NY: Springer Publishing.

Berzoff, J. (2008). Working at the end of life: Providing clinically based psychosocial care. Clinical Social Work Journal, 36(2), 177–184. doi:10.1007/s10615-007-0119-z

Berzoff, J., & Kita, E. (2010). Compassion fatigue and countertransference: Two different concepts. Clinical Social Work Journal, 38(3), 341–349. doi:10.1007/ s10615-010-0271-8

Bevans, K., Cerbone, A., & Overstreet, S. (2008). Relations between recurrent trauma exposure and recent life stress and salivary cortisol among children. Development and Psychopathology, 20, 257–272. doi:10.1017/S0954579408000126

Bienertová-Vašků, J., Nečesánek, I., Novák, J., Vinklárek, J., & Zlámal, F. (2014). “Stress entropic load” as a transgenerational epigenetic response trigger. Medical Hypotheses, 82(3), 271. doi:10.1016/j.mehy.2013.12.008

Birnholz, J. C., & Benacerraf, B. R. (1983). The development of human fetal hearing. Science, 222 (4623), 516–518.

Biro, F. M., Khoury, P., & Morrison, J. A. (2006). Influence of obesity on timing of puberty. International Journal of Andrology, 29, 272–277. doi:10.1111/j.1365-2605.2005.00602.x

Blakemore, S.-J. (2008). The social brain in adolescence. Nature Reviews Neuroscience, 9 (4), 267–277. doi:10.1038/nrn2353

Bluck, S., Dirk, J., Mackay, M., & Hux, A. (2008). Life experience with death: Relation to death attitudes and to the use of death-related memories. Death Studies, 32, 524–549. doi:101080/07481180802138860

Bluebond-Langner, M. (1978). The private worlds of dying children. Princeton, NJ: Princeton University Press.

Bobkowski, P., & Smith, J. (2013). Social media divide: Characteristics of emerging adults who do not use social network websites. Media, Culture & Society, 35(6), 771–781. doi:10.1177/0163443713491517

Boelen, P. P., & Spuij, M. (2013). Symptoms of post-traumatic stress disorder in bereaved children and adolescents: Factor structure and correlates. Journal of Abnormal Child Psychology, 41(7), 1097–1108. doi:10.1007/s10802-013-9748-6

Bonanno, G., Wortman, C. B., Lehman, D. R., Tweed, R. G., Haring, M., Sonnega, J., . . . Nesse, R. M. (2002). Resilience to loss and chronic grief: A prospective study from preloss to 18-months postloss. Journal of Personality and Social Psychology, 83, 1150–1164. doi:10.1037//0022-3514.83.5.1150

Bonanno, G., Wortman, C. B., & Nesse, R. M. (2004). Prospective patterns of resilience and maladjustment during widowhood. Psychology and Aging, 19(2), 260–270. doi:10.1037/0882-7974.19.2.260

Bonanno, G. A. (2009). The other side of sadness: What the new science of bereavement tells us about life after loss. New York, NY: Basic Books.

Bonnewyn, A., Shah, K., Bruffaerts, R., Schoevaerts, K., Rober, P., Van Parys, H., . . . Demyttenaere, K. (2014). Reflections of older adults on the process preced- ing their suicide attempt: A qualitative approach. Death Studies, 38(9), 612–618. doi:10.1080/481187.2013.835753

Bonomi, A., Thompson, R., Anderson, M., Reid, R., Carrell, D., Dimer, J., . . . Rivera, F. (2006). Intimate partner violence and women’s physical, mental, and social functioning. American Journal of Preventive Medicine, 30(6), 458–466. doi:10.1016/ j.amepre.2006.01.015

Bonwick, R. J., & Morris, P. L. (1996). Post-traumatic stress disorder in elderly war veterans. International Journal of Geriatric Psychiatry, 11(12), 1071–1076.

Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief. Cambridge, MA: Harvard University Press.

References 305

Boss, P. (2004). Ambiguous loss research, theory and practice: Reflections after 9/11. Journal of Marriage and the Family, 66(3), 551–556. doi:10.1111/ j.0022-2445.2004.00037.x

Boss, P. (2006). Loss, trauma, and resilience: Therapeutic work with ambiguous loss. New York, NY: W. W. Norton.

Boss, P., Roos, S., & Harris, D. (2011). Grief in the midst of ambiguity and uncertainty: An exploration of ambiguous loss and chronic sorrow. In R. A. Neimeyer, D. L. Harris, H. R. Winokuer, & G. F. Thornton (Eds.), Grief and bereavement in contempo- rary  society: Bridging research and practice (pp. 163–175). New York, NY: Routledge.

Bowlby, J. (1998). Attachment and loss: Sadness and depression. Attachment and loss (Vol. 3). London, UK: Pimlico. (Original work published 1980)

Bowlby, J. (2000). The making and breaking of affectional bonds. New York, NY: Routledge. (Original work published 1979)

boyd, D. (2014). It’s complicated: The social lives of networked teens. New Haven, CT: Yale University Press.

Boyden, J. Y., Kavanaugh, K., Issel, L. M., Eldeirawi, K., & Meert, K. L. (2014). Experiences of African American parents following perinatal or pediatric death: A literature review. Death Studies, 38, 374–380. doi:10.1080/07481187.2013.766656

Boyle, P. J., Feng, Z., & Raab, G. M. (2011). Does widowhood increase mortality risk? Testing for selection effects by comparing causes of spousal death. Epidemiology, 22, 1–5. doi:10.1097/EDE.0b013e3181fdcc0b

Braden, A., Overholser, J., Fisher, J., & Ridley, J. (2015). Life meaning is associ- ated with suicidal ideation among depressed veterans. Death Studies, 39, 24–29. doi:1080/07481187.2013. 871604

Brandon, A. R., Pitts, S., Denton, W. H., Stringer, C. A., & Evans, H. M. (2009). A history of the theory of prenatal attachment. Journal of Prenatal & Perinatal Psychological Health, 23(4), 201–222. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/ articles/PMC3083029

Bratter, B., & Dennis, H. (2008). Project renewment: The first retirement model for career women. New York, NY: Scribner.

Brave Heart, M. Y. H. (1998). The return to the sacred path: Healing the historical trauma and the historical unresolved grief response among the Lakota through a psychoeducational group intervention. Smith College Studies in Social Work, 68(3), 287–305. doi:10.1080/00377319809517532

Breheny, M., Stephens, C., & Spilsbury, L. (2013). Involvement without interference: How grandparents negotiate intergenerational expectations in relationships with grandchildren. Journal of Family Studies, 19(2), 174–184.

Breitbart, W., Rosenfeld, B., Gibson, C., Pessin, H., Poppito, S., Nelson, C., . . . Olden, M. (2010). Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psycho-Oncology, 19(1), 21–28. doi:10.1002/ pon.1556

Brenhouse, H. C., & Andersen, S. L. (2011). Developmental trajectories during ado- lescence in males and females: A cross-species understanding of underlying brain changes. Neuroscience & Biobehavioral Reviews, 35(8), 1687–1703. doi:10.1016/ j.neubiorev.2011.04.013

Brewer, J., & Sparkes, A. (2011). Parentally bereaved children and posttraumatic growth: Insights from an ethnographic study of a UK childhood bereavement service. Mortality, 16, 204–222. doi:10.1080/13576275.2011.586164

Brickell, C., & Munir, K. (2008). Grief and its complications in individu- als with intellectual  disability. Harvard Review of Psychiatry, 16(1), 1–12. doi:10.1080/10673220801929786

Briere, J., & Spinazzola, J. (2009). Assessment of sequelae of complex trauma: Evidence-based measures. In C. A. Courtois & J. D. Ford (Eds.), Treating complex

Grief and Loss Across the Lifespan306

traumatic stress disorders: An evidence-based guide (pp. 104–123). New York, NY: The Guilford Press.

Brod, S., Rattazzi, L., Piras, G., & D’Acquisto, F. (2014). ’As above, so below’ examin- ing the interplay between emotion and the immune system. Immunology, 143(3), 311–318. doi:10.1111/imm.12341

Broderick, P. C., & Frank, J. L. (2014). Learning to BREATHE: An intervention to fos- ter mindfulness in adolescence. New Directions for Youth Development, 142, 31–44. doi:10.1002/yd.20095

Broderick, P. C., & Metz, S. (2009). Learning to BREATHE: A pilot trial of a mindfulness curriculum for adolescents. Advances in School Mental Health Promotion, 2, 35–46. doi:10.1080/1754730X.2009.9715696

Bruner, J. (1986). Actual worlds, possible minds. Cambridge, MA: Harvard University Press.

Bryant, R., Kenny, L., Joscelyne, A., Rawson, N., Maccallum, F., Cahill, C., . . . Aderka, I. (2014). Treating prolonged grief disorder a randomized clinical trial. JAMA Psychiatry, 71(12), 1332–1339. doi:10.1001/jamapsychiatry.2014.1600

Buchsbaum, B. C. (1996). Remembering a parent who has died: A developmental per- spective. In D. Klass, P. R. Silverman, & S. L. Nickman (Eds.), Continuing bonds (pp. 113–124). Philadelphia, PA: Taylor & Francis.

Burke, C. A. (2010). Mindfulness-based approaches with children and adolescents: A preliminary review of current research in an emergent field. Journal of Child and Family Studies, 19(2), 133–144. doi:10.1007/s10826-009-9282-x

Cacciatore, J. (2010). The unique experiences of women and their families after the death of a baby. Social Work in Health Care, 49, 134–148. doi:10.1080/00981380903158078

Cacciatore, J., & Flint, M. (2012). ATTEND: Toward a Mindfulness-based bereavement care model. Death Studies, 36, 61–82. doi:10.1080/07481187.2011.591275

Cait, C.-A. (2004). Spiritual and religious transformation in women who were paren- tally bereaved as adolescents. Omega: Journal of Death and Dying, 49, 163–181. doi:10.2190/W1QG-001U-ALCQ-W609

Campbell, J. (2002). Health consequences of intimate partner violence. The Lancet, 359(9314), 1331–1336.

Campos, P. (2004). The obesity myth: Why America’s obsession with weight is hazardous to your health. New York, NY: Gotham Books.

Carey, I. M., Shah, S. M., DeWilde, S., Harris, T., Victor, C. R., & Cook, D. G. (2014). Increased risk of acute cardiovascular events after partner bereavement: A  matched cohort study. JAMA Internal Medicine, 174(4), 598–605. doi:10.1001/ jamainternmed.2013.14558

Carlos, N. (2014). The processes of grief & resilience among emerging adults. Poster Session at the Association of Death Education and Counseling Conference, April 2014.

Carlson, D. (2008). 2007 AESA presidential address: Conflict of the faculties: Democratic progressivism in the age of “No Child Left Behind.” Educational Studies, 43, 94–113. doi:10.1080/00131940801944488

Carr, D. (2010). New perspectives on the dual process model (DPM): What have we learned? What questions remain? Omega: Journal of Death and Dying, 61(4), 371–380. doi:10.2190/OM.61.4.g

Carr, D., Nesse, R., & Wortman, C. (2006). Spousal bereavement in late life. New York, NY: Springer Publishing.

Carstensen, L. L. (2006). The influence of a sense of time on human development. Science, 312, 1913–1915. doi:10.1126/science.1127488

Carstensen, L. L. (2015). The new age of much older age. Time, 185(6/7), 68–70. Carter, S. K., & Guittar, S. G. (2014). Emotion work among pregnant and birthing

women. Midwifery, 30(9), 1021–1028. doi:10.1016/j.midw.2014.05.003

References 307

Catalano, S. (2013). Intimate Partner Violence: Attributes of Victimization, 1993–2011. The Bureau of Justice Statistics, Office of Justice Programs, U.S. Department of Justice, 1–19. Retrieved from http://www.bjs.gov/content/pub/pdf/ipvav9311.pdf

Center for Consumer Freedom. (2008). An epidemic of obesity myths. Washington, DC: Author. Retrieved from www.consumerfreedom.com/news.detail.cfm/ headline/2535

Center for Creative Freedom. (2008). An epidemic of obesity myths. Washington, DC: Author. Retrieved from http://www.consumerfreedom.com/news_detail. cfm/headline/2535 www.consumerfreedom.com/news.detail.cfm/headline/2535.

Center on the Developing Child at Harvard University. (2009). Maternal depression can undermine the development of young children: Working paper no. 8. Retrieved from http://www.developingchild.harvard.edu

Centers for Disease Control and Prevention. (2005). Adverse childhood experiences study: Data and statistics. Atlanta, GA: Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. Retrieved from http://www.cdc.gov/ nccdphp/ace/prevalence.htm#table

Centers for Disease Control and Prevention. (2010). Ten leading causes of death. Retrieved from http://www.cdc.gov/injury/wisqars/pdf/10lcid_all_deaths_ by_age_group_2010-a.pdf

Centers for Disease Control and Prevention. (2014). Injury prevention & control: Data & statistics (WISQARSTM). Retrieved from http://www.cdc.gov/injury/wisqars/ index.html

Cerulli, C., Poleshuck, E., Raimondi, C., Veale, S., & Chin, N. (2012). “What fresh hell is this?” Victims of intimate partner violence describe their experiences of abuse, pain, and depression. Journal of Family Violence, 25, 229–236. doi:10.1007/ s10896-012-9469-6

Chandra, A. C., Copen, C., & Stephan, H. (2013). Infertility and impaired fecundity in the US, 1982–2010: Data from the national survey of family growth. Washington DC: US Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics.

Chatterjee, S., Spiro, A., King, L., King, D., & Davison, E. (2009). Research on aging mil- itary veterans. Lifespan implications of military service. PTSD Research Quarterly, 20(3), 1–2.

Chee, L. P., Goh, E. L., & Kuczynski, L. L. (2014). Oversized loads: Child paren- tification in low-income families and underlying parent-child dynamics. Families in Society: The Journal of Contemporary Social Services, 95(3), 204–212. doi:10.1606/1044-3894.2014.95.26

Chen, S., & Parmigiani, G. (2007). Meta-analysis of BRCA1 and BRCA2 penetrance. Journal of Clinical Oncology, 25, 1329–1333. doi:10.1200/JCO.2006.09.1066

Cherney, P. M., & Verhey, M. P. (1996). Grief among gay men associated with multiple losses from AIDS. Death Studies, 20(2), 115–132.

Children’s Defense Fund. (2012). Child Poverty in America: 2011. Retrieved from http:// www.childrensdefense.org/library/data/2011-child-poverty-in-america.pdf

Children’s Hemiplegic Awareness and Stroke Association. (2014). Retrieved from http://www.chasa.org/newly-diagnosed/early-intervention

Choi, H., Van Riper, M., & Thoyre, S. (2012). Decision making following a prenatal diagnosis of Down syndrome: An integrative review. Journal of Midwifery and Women’s Health, 57(2), 156–164. doi:10.1111/j.1542-2011.2011.00109.x

Christ, G. H. (2000). Impact of development on children’s mourning. Cancer Practice, 8(2), 72–81.

Christ, G. H., Siegel, K., & Christ, A. E. (2002). Adolescent grief: “It never really hit me . . . until it actually happened.” JAMA: Journal of the American Medical Association, 288, 1269–1279. doi:10.1001/jama.288.10.1269

Grief and Loss Across the Lifespan308

Christian, J. (2006). Grief and combat related losses: Helping wounded veterans grieve. The Forum: ADEC, 32(3), 8.

Cicirelli, V. (2002). Older adults’ views on death. New York, NY: Springer Publishing. Cicirelli, V. (2006). Fear of death in mid-old age. Journals of Gerontology, 61(B),

P75–P81. Cinzia, P. A., Montagna, L., Mastroianni, C., Giuseppe, C., Piredda, M., & Grazia de

Marinis, M. (2014). Losing a parent: Analysis of the literature on the experience and needs of adolescents dealing with grief. Journal of Hospice and Palliative Nursing, 16, 362–373. doi:10.1097/NJH.0000000000000079

Clark, A. S., & Domchek, S. M. (2011). Clinical management of hereditary breast cancer syndromes. Journal of Mammary Gland Biology and Neoplasia, 16(1), 17–25. doi:10.1007/s10911-011-9200-x

Clark, C. (1987). Sympathy biography and sympathy margin. The American Journal of Sociology, 93(2), 290–321. Retrieved from http://www.jstor.org/stable/2779586

Clark, J., Warburton, J., & Tilse, C. (2009). Missing siblings: Seeking more adequate social responses. Child and Family Social Work, 14, 267–277. doi:10.1111/j.1365-2206.2008.00593.x

Clayton, P. J. (1974). Mortality and morbidity in the first year of bereavement. Archives of General Psychiatry, 30, 747–750.

Clayton, R. B., Nagurney, A., & Smith, J. (2013). Cheating, breakup, and divorce: Is Facebook use to blame? Cyberpsychology, Behavior, and Social Networking, 16, 717–720. doi:10.1089/cyber.2012.0424

Clements, P. T., Focht-New, G., & Faulkner, M. J. (2004). Grief in the shadows: Exploring loss and bereavement in people with developmental disabilities. Issues in Mental Health Nursing, 25, 799–808. doi:10.1080/01612840490506383

Cloitre, M., Courtois, C. A., Ford, J. D., Green, B. L., Alexander, P., Briere, J., . . . V an der Hart, O. (2012). The ISTSS Expert Consensus Treatment Guidelines for Complex PTSD in Adults. Retrieved from http://www.istss.org

Clukey, L. (2007). “Just be there”: Hospice caregivers’ anticipatory mourning expe- rience. Journal of Hospice and Palliative Nursing, 9(3), 150–158. doi:10.1097/01. NJH.0000269992.13625.00

Coates, S., & Gaensbauer, T. J. (2009). Event trauma in early childhood: Symptoms, assessment, intervention. Child and Adolescent Psychiatry Clinics of North America, 18(3), 611–626. doi:10.1016/j.chc.2009.03.005

Coifman, C. J., & Bonanno, G. A. (2010). When distress does not become depression: Emotion context sensitivity and adjustment to bereavement. Journal of Abnormal Psychology, 119(3), 479–490. doi:10.1037/a0020113

Cole, K. L. (1995). Pregnancy loss through miscarriage or stillbirth. In M. V. O’Hara et al. (Eds.), Psychological aspects of women’s reproductive health (pp. 194–206). New York, NY: Springer Publishing.

Coleman, R., & Neimeyer, R. (2010). Measuring meaning: Searching for and making sense of spousal loss in late-life. Death Studies, 34, 804–834. doi:10.1080/ 07481181003761625

Collins, W. A. (2003). More than myth: The developmental significance of romantic relationships during adolescence. Journal of Research on Adolescence, 13, 1–24.

Connolly, J., & McIsaac, C. (2009). Adolescents’ explanations for romantic disso- lutions:  A developmental perspective. Journal of Adolescence, 32, 1209–1223. doi:10.1016/j.adolescence.2009.01.006

Corbett, D. (with Higgins, R.). (2007). Portfolio life: The new path to work, purpose and pas- sion after 50. San Francisco, CA: Jossey-Bass.

Corr, C., Nabe, C., & Corr, D. (2006). Death, dying, life & living. Canada: Thompson Wadsworth.

References 309

Costa, B. M., Hall, L., & Stewart, J. (2007). Qualitative exploration of the nature of grief-related beliefs and expectations. Omega: Journal of Death and Dying, 55, 27–56. doi:10.2190=CL20-02G6-607R-8561

Cote-Arsenault, D., & Donato, K. (2011). Emotional cushioning in pregnancy after peri- natal loss. Journal of Reproductive and Infant Psychology, 29(1), 81–92. doi:10.1080/0 2646838.2010.513115

Courtois, C. (2004). Complex trauma, complex reactions: Assessment and treatment. Psychotherapy: Theory, Research, Practice, Training, 41(4), 412–425. doi:10.1037/ 0033-3204.41.4.412

Cousijn, J., Koolschijn, P. P., Zanolie, K., Kleibeuker, S. W., & Crone, E. A. (2014). The relation between gray matter morphology and divergent thinking in adolescents and young adults. PLoS ONE, 9(12), 1–21. doi:10.1371/journal.pone.0114619

Covinsky, K., Yaffe, K., Lindquist, K., Cherkasova, E., Yelin, E., & Blazer, D. (2010). Depressive symptoms in middle age and the development of later-life functional limitations: The long-term effect of depressive symptoms. Journal of the American Geriatrics Society, 58(3), 551–556. doi:10.1111/j.1532-5415.2010.02723.x

Creighton, G., Oliffe, J., Butterwick, S., & Saewyc, E. (2013). After the death of a friend: Young men’s grief and masculine identities. Social Science & Medicine, 84, 35–43. doi:10.1016/j.socscimed.2013.02.022

Crenshaw, D. A. (2002). The disenfranchised grief of children. In K. J. Doka (Ed.), Disenfranchised grief: New directions, challenges and strategies for practice (pp. 293–306). Champaign, IL: Research Press.

Criss, M., Pettit, G., Bates, J., Dodge, K., & Lapp, A. (2002). Family diversity, positive peer relationships and children’s externalizing behavior: A longitudinal per- spective on risk and resilience. Child Development, 73, 1220–1237. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2756653

Crowley, S. (2014). Mortgage interest deduction reform. Retrieved from http://nlihc .org/sites/default/files/2014AG-92.pdf

Cudmore, L. (2005). Becoming parents in the context of loss. Sexual and Relationship Therapy, 20(3), 299–308.

Cui, M., Fincham, F. D., & Durtschi, J. A. (2011). The effect of parental divorce on young adults’ romantic relationship dissolution: What makes a difference? Personal Relationships, 18(3), 410–426. doi:10.1111/j.1475-6811.2010.01306.x

Currier, J., Holland, J., & Neimeyer, R. (2007). The effectiveness of bereavement interventions with children: A meta-analytic review of controlled outcome research. Journal of Clinical Child and Adolescent Psychology, 36(2), 253–259. doi:10.1080/15374410701279669

Dalbert, C., & Sallay, H. (Eds.). (2004). The justice motive in adolescence and young adult- hood: Origins and consequences. London and New York: Routledge.

Daly, M., Farmer, J., Harrop-Stein, C., Montgomery, S., Itzen, M., Wagner Costalas, J., . . . Gillespie, D. (1999). Exploring family relationships in cancer risk counseling using the genogram. Cancer Epidemiology, Biomarkers and Prevention, 8, 393–398. doi:10.1158/1055-9965.EPI-463-2

Dande, A., & Pandit, A. (2013). Broken heart syndrome, neurogenic stunned myocardium and stroke. Current Treatment Options in Cardiovascular Medicine, 15(3), 265–275. doi:10.1007/s11936-013-0235-8

D’Andrea, W., Ford, J., Stalbach, B., Spinazzola, J., & van der Kolk, B. (2012). Understanding interpersonal trauma in children: Why we need a develop- mentally appropriate trauma diagnosis. Journal of Orthopsychiatry, 82, 187–200. doi:10.1111/j.1939-0025.2012.01154.x

Dare, J. S. (2011). Transitions in midlife women’s lives: Contemporary experiences. Health Care for Women International, 32, 111–133. doi:10.1080/07399332.2010.500753

Grief and Loss Across the Lifespan310

Davidson, A. (2014, June 22). “Hi Mom, I’m home,” New York Times Magazine.  Also  “It’s  official, the boomerang kids won’t leave.” Retrieved from http://www.nytimes.com/2014/06/22/magazine/its-official-the-boomerang- kids-wont-leave.html?_r=0

Davis, C. G., & Nolen-Hoeksema, S. (2001). Loss and meaning: How do people make sense of loss? American Behavioral Scientist, 44, 726–741. doi:10.1177/ 0002764201044005003

Davis, C. G., Wortman, C. B., Lehman, D. R., & Silver, R. C. (2000). Searching for meaning in loss: Are clinical assumptions correct? Death Studies, 24(6), 497–540. doi:10.1080/07481180050121471

Davis, D. L. (1996). Empty cradle, broken heart. Golden, CO: Fulcrum Publishing. Davis-Floyd, R. (1992). Birth as an American rite of passage. Los Angeles: University of

California Press. Davison, E. H., Pless, A. P., Gugliucci, M. R., King, L. A., King, D. W., Salgado, D. M., . . .

Bachrach, P. (2006). Late-life emergence of early-life trauma the phenomenon  of late-onset stress symptomatology among aging combat veterans. Research on Aging, 28(1), 84–114.

Davison, K. K., Werder, J. L., Trost, S. G., Baker, B. L., & Birch, L. L. (2007). Why are early  maturing girls less active? Links between pubertal development, psychological well-being, and physical activity among girls at ages 11 and 13. Social Science & Medicine, 64(12), 2391–2404. doi:10.1016/j.socscimed.2007.02.033

Deave, T., Johnson, D., & Ingram, J. (2008). Transition to parenthood: The needs of pregnancy and early parenthood. BMC Pregnancy and Childbirth, 8, 30–41. doi:10.1186/1471-2393/8/30

De Bellis, M. D., Keshavan, M. S., Clark, D. B., Casey, B. J., Giedd, J. N., Boring, A. M., . . . Ryan, N. D. (1999). Developmental traumatology part II: Brain development. Biological Psychiatry, 45, 1271–1284. doi:10.1016/S0006-3223(99)00045-1

Deevey, S. (1997). Bereavement experiences in lesbian kinship networks in Ohio. (Doctoral Dissertation, Ohio State University, 1997). Abstract in Dissertation Abstracts International, 58(02), 630.

DeGregorio, L. J. (2013). Intergenerational transmission of abuse: Implications for par- enting interventions from a neuropsychological perspective. Traumatology, 19(2), 158–166. doi:10.1177/1534765612457219

de Groot, M. H., de Keijser, J., & Neeleman, J. (2006). Grief shortly after suicide and natural death: A comparative study among spouses and first-degree rela- tives. Suicide and Life-Threatening Behavior, 36(4), 418–431. Retrieved from http:// search.proquest.com/docview/224869836?accountid=13626

Dehaene-Lambertz, G., Hertz-Pannier, L., & Dubois, J. (2006). INMED/TINS special issue: Nature and nurture in language acquisition: Anatomical and functional brain-imaging studies in infants. Trends in Neurosciences, 29(7), 367–373. doi:10.1016/j.tins.2006.05.001

Dehlin, L., & Reg, L. M. (2009). Adolescents’ experiences of a parent’s seri- ous illness and death. Palliative and Supportive Care, 7(1), 13–25. doi:10.1017/ S1478951509000042

Denham, S., Bassett, H., Way, E., Mincic, M., Zinsser, K., & Graling, K. (2012). Preschoolers’ emotion knowledge: Self-regulatory foundations, and predictions of early school success. Cognition & Emotion, 26(4), 667–679. doi:10.1080/0269993 1.2011.602049

Den Hond, E., & Schoeters, G. (2006). Endocrine disrupters and human puberty. International Journal of Andrology, 29, 264–271. doi:10.1111/j.1365-2605.2005.00561.x

Department of Veteran Affairs. (2014). The military history checklist. Retrieved from http://www.wehonorveterans.org/get-practical-resources/resources-topic/ intakeadmission

References 311

Devita-Raeburn, E. (2004). The empty room: Surviving the loss of a brother or sister at any age. New York: Scribner.

Dietz, L., Stoyak, S., Melhem, N., Matthews, K., Brent, D., Porta, G., . . . Walker Payne, M. (2013). Cortisol response to social stress in parentally bereaved youth. Biological Psychiatry, 73(4), 379–387. doi:10.1016/j.biopsych.2012.08.016

Ding, X. X., Wuc, Y. L., Xu, S. J., Zhua, R. P., Jia, X. M., Zhang, S. F., . . . Tao, F. B. (2014). Maternal anxiety during pregnancy and adverse birth outcomes: A sys- tematic review and meta-analysis of prospective cohort studies. Journal of Affective Disorders, 159, 103–110. doi:10.1016/j.jad.2014.02.027

Djivre, S. E., Levin, E., Schinke, R. J., & Porter, E. (2012). Five residents speak: The mean- ing of living with dying in a long-term care facility. Death Studies, 36(6), 487–518. doi:10.1080/07481187.2011.591608

Dobbs, D. (2011, October). Beautiful brains: The new science of the teenage brain. National Geographic, 220, 36–59.

Dodd, P., Dowling, S., & Hollins, S. (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabili- ties. Journal of Intellectual Disability Research, 49(7), 537–543. doi:10.1111/j.1365- 2788.2005.00702.x

Doka, K. (1989). Disenfranchised grief: Recognizing hidden sorrow. New York, NY: Lexington Books.

Doka, K. J. (Ed.). (2002). Disenfranchised grief: New directions, challenges and strategies for practice. Champaign, IL: Research Press.

Dombrovski, A., Clark, L., Siegle, G., Butters, M., Ichikawa, N., Sahakian, B., . . . Szanto, K. (2010). Reward/Punishment reversal learning in older suicide attempt- ers. American Journal of Psychiatry, 167(6), 699–707. doi:10.1176/appi.ajp.2009 .09030407

Dombrovski, A. K., Szanto, K., Duberstein, P., Connor, K. R., Houck, P. R., & Conwell, Y. (2008). Sex differences in correlates of suicide lethality in late life. American Journal of Geriatric Psychiatry, 16, 905–913. doi:10.1097/JGP.0b013e3181860034

Doss, B. D., Rhoades, G. K., Stanley, S. M., & Markham, H. J. (2009). The effect of the transition to parenthood on relationship quality: An 8-year prospective study. Journal of Personality and Social Psychology, 96(3), 601–619. doi:10.1037a0021684

Douglas, H. A. (2014). Promoting meaning-making to help our patients grieve: An exemplar for genetic counselors and other health care professionals. Journal of Genetic Counseling, 23(5), 695–700. doi:10.1007/s10897-014-9731-6

Dransart, P. & Stevens, C.G. (2013). Unseen lives, silent mourning: The visibility of lesbian death in materialized words. Welsh Repository Network Partner, 1–3, Wales, England: University of Wales: Trinity Saint David. http://hdl.handle. net/10412/253.

Drimalla, H. (2015). Science debunks midlife myths. Scientific American Mind, 26(2), 58–61. Retrieved from http://www.scientificamerican.com/article/ science-debunks-midlife-myths

Dunning, S. (2006). As a young child’s parent dies: Conceptualizing and construct- ing preventive interventions. Clinical Social Work Journal, 34, 499–514. doi:10.1007/ s10615-006-0045-5

Eaves, D., McQuiston, C., & Miles, M. (2005). Coming to terms with adult sibling grief. Journal of Hospice and Palliative Nursing, 7(3), 139–149.

Ebrecht, M., Hextall, J., Kirtley, L. G., Taylor, A., Dyson, M., & Weinman, J. (2004). Perceived stress and cortisol levels predict speed of wound healing in healthy male adults. Psychoneuroendocrinology, 29(6), 798–809. doi:10.1016/ S0306-4530(03)00144-6

Edleman, H. (2014). Motherless daughters: The legacy of loss, 20th Anniversary (3rd) edition. Jackson, TN: Da Capo Lifelong Books.

Grief and Loss Across the Lifespan312

Eiden, R., Edwards, E. P., & Leonard, K. E. (2007). A conceptual model for the development of externalizing behavior problems among kindergarten children of alcoholic families: Role of parenting and children’s self-regulation. Developmental Psychology, 43, 1187–1201. doi:10.1037/0012-1649.43.5.1187

Elkind, D. (1967). Egocentrism in adolescence. Child Development, 38, 1025–1034. Retrieved from http://www.jstor.org/stable/1127100

Emanuel, E. (2014). Why I hope to die at 75. Retrieved from http://www.theatlantic .com/features/archive/2014/09/why-i-hope-to-die-at-75/379329

Embry, L., & Dawson, G. (2002). Disruptions in parenting behavior related to mater- nal depression: Influence on children’s behavioral and psychobiological devel- opment. In J. Borkowski, S. Ramey, & M. Bristol-Powers (Eds.), Parenting and the  child’s  world: Influences on academic, intellectual and social-emotional development (pp. 203–214). New Jersey, NJ: Erlbaum.

England, P. (2011, July 15). BHJ continued: Story gate two: relief and gratitude [web log post]. Retrieved from HYPERLINK “redir.aspx?C=89358dbab4be4e33a2cf468 d3c93577c&URL=http%3a%2f%2fbirthpeeps.blogspot.com%2f2011%2f07%2fbhj- continued-story-gate-two-relief-and.html” http://birthpeeps.blogspot .com/2011/07/bhj-continued-story-gate-two-relief-and.html

Ens, C., & Bond, J. J. (2005). Death anxiety and personal growth in adoles- cents experiencing the death of a grandparent. Death Studies, 29(2), 171–178. doi:10.1080/07481180590906192

Epstein, R. M., Siegel, D. J., & Silberman, J. (2008). Self-monitoring in clinical practice: A challenge for medical educators. Journal of Continuing Education in the Health Professions, 28(1), 5–13. doi:10.10020chp.149

Erickson, K. I., Gildengers, A. G., & Butters, M. A. (2013). Physical activity and brain plasticity in late adulthood. Dialogues in Clinical Neuroscience, 15(1), 99–108. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3622473

Erikson, E. H. (1980). Identity and the life cycle. New York, NY: W. W. Norton. (Original work published 1959)

Erlandsson, K., Warland, J., Cacciatore, J., & Rådestad, I. (2013). Seeing and holding a stillborn baby: Mothers’ feelings in relation to how their babies were presented to them after birth—findings from an online questionnaire. Midwifery, 29(3), 246–250. doi:10.1016/j.midw.2012.01.007

Ernst, M., Romeo, R. D., & Andersen, S. L. (2009). Neurobiology of the develop- ment of motivated behaviors in adolescence: A window into a neural sys- tems  model. Pharmacology, Biochemistry and Behavior, 93(3), 199–211. doi:10.1016/ j.pbb.2008.12.013

Essex, E., Newsome, W., & Moses, H. (2004). Caring for grandparent-headed families: Challenges and opportunities for school social workers. School Social Work Journal, 28(2), 1–19.

Essex, M. J., Thomas Boyce, W. W., Hertzman, C., Lam, L. L., Armstrong, J. M., Neumann, S. A., . . . Kobor, M. S. (2013). Epigenetic vestiges of early developmen- tal adversity: Childhood stress exposure and DNA methylation in adolescence. Child Development, 84(1), 58–75. doi:10.1111/j.1467-8624.2011.01641.x

Evans, E. (2013). A review of cultural influence on maternal mortality in the develop- ing world. Midwifery, 29, 490–496. doi:10.1016/j.midw.2012.04.002

Evans, J. P., Skrzynia, C., Susswein, L., & Harlan, M. (2006). Genetics and the young woman with breast cancer. Breast Disease, 23, 17–19. Retrieved from http:// iospress .metapress.com/content/5551346n3mhguw17. (Original work published 2005)

Evans, M. I., & Britt, D. W. (2005). Fetal reduction. Seminars in Perinatology, 29(5), 321–329. doi:10.1053/j.semperi.2005.10.004

Ewalt, P. L., & Perkins, L. (1979). The real experience of death among adolescents: An empirical study. Social Casework (now Families in Society), 60, 547–551.

References 313

Faber, A., & Mazlish, E. (1998). Siblings without rivalry: How to help your children live together, so you can live too. New York, NY: HarperCollins. (Original work published 1987)

Fajgenbaum, D., Chesson, B., & Lanzi, R. G. (2012). Building a network of grief sup- port on college campuses: A national grassroots initiative. Journal of College Student Psychotherapy, 26, 99–120. doi:10.1080/87568225.2012.659159

Falconer, K., Sachsenweger, M., Gibson, K., & Norman, H. (2011). Grieving in the inter- net age. New Zealand Journal of Psychology, 40(3), 79–88.

Fanos, J. H., Little, G. A., & Edwards, W. H. (2009). Candles in the snow: Ritual and memory for siblings of infants who died in the intensive  care  nursery. Journal of Pediatrics, 154(6), 849–853. Retrieved from http://www.unboundmedicine .com/medline/citation/19342063/Candles_in_the_snow:_ritual_and_memory_ for_ siblings_of_infants_who_died_in_the_intensive_care_nursery_

Farrant, B., & Watson, P. (2003). Health care delivery: Perspectives of young people with chronic illness and their parents. Journal of Pediatric Child Health, 40, 175–179. doi:10.1016/j.pedhc.2010.08.005

Farrell, F., & Hutter, J. J. (1980). Living until death: Adolescents with cancer. Health and Social Work, 5(4), 35–38.

Faust Piro, C. (2009). Baby James. In C. A. Walter & J. L. M. McCoyd (Eds.), Grief and loss across the lifespan: A biopsychosocial perspective (pp. 89–94). New York, NY: Springer Publishing.

Fenge, L., & Fannin, A. (2009). Sexuality and bereavement: Implications for practice with older lesbians and gay men. Practice: Social Work in Action, 21(1), 35–46. doi:10.1080/09503150902745997

Feygin, D. L., Swain, J. E., & Leckman, J. F. (2006). The normalcy of neurosis: Evolutionary origins of obsessive-compulsive disorder and related behav- iors. Progress  in  Neuro-Psychopharmacology and Biological Psychiatry, 30, 854–864. doi:10.1016/j.pnpbp.2006.01.009

Field, N. P., & Wogrin, C. (2011). The changing bond in therapy for unresolved loss: An attachment theory perspective. In R. A. Neimeyer, D. L. Harris, H. R. Winokuer, & G. F. Thornton, (Eds.), Grief and bereavement in contemporary society: Bridging research and practice (pp. 37–56). New York, NY: Routledge.

Field, P., & Filanosky, C. C. (2010). Continuing bonds, risk factors for compli- cated grief, and adjustment to bereavement. Death Studies, 34(1), 1–29. doi:10.1080/07481180903372269

Findley, P. (2010). Returning veterans, traumatic brain injury, and Veterans’ Administration services. In T. S. Kerson, J. L. M. McCoyd, & Associates (Eds.), Social work in health settings (3rd ed., pp. 179–189). London, UK: Routledge.

Fink, D. S., Gallaway, S., & Millikan, A. (2013). Assessment of subthreshold and devel- oping behavioral health concerns among U.S. army soldiers. Military Medicine, 178, 1188–1195. doi:10.7205/MIL.MED-D-13-0024

Finkbeiner, A. K. (1996). After the death of a child: Living with loss through the years. New York, NY: Free Press.

Fleisher, B., & Reese, T. (2013). The new senior woman. Lanham, MD: Rowman and Littlefield.

Fleming, S. J., & Adolph, R. (1986). Helping bereaved adolescents: Needs and responses. In C. A. Corr & J. N. McNeil (Eds.), Adolescence and death (pp. 97–118). New York, NY: Springer Publishing.

Fleming, S. J., & Belanger, S. K. (2001). Trauma, grief, and surviving child sexual abuse. In R. Neimeyer (Ed.), Meaning reconstruction & the experience of loss (pp. 311–332). Washington, DC: American Psychological Association.

Fletcher, J., Mailick, M., Song, J., & Wolfe, B. (2013). A sibling death in the family: Common and consequential. Demography, 50(3), 803–826. doi:10.1007/ s13524-012-0162-4

Grief and Loss Across the Lifespan314

Floyd, F., Seltzer, M. M., Greenberg, J. S., & Song, J. (2013). Parental bereavement during mid-to-later life: Pre-to postbereavement functioning and intrapersonal resources for coping. Psychology and Aging, 28(2), 402–413. doi:10.1037/a0029986

Foley, G., Timonen, V., & Hardiman, O. (2014). Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective. Qualitative Health Research, 24(1), 67–77. doi:10.1177/1049732313516545

Foote, C. E., & Frank, A. W. (1999). Foucault and therapy: The disciplining of grief. In A. S. Chambron, A. Irving, & L. Epstein (Eds.), Reading Foucault for social work (pp. 157–187). New York, NY: Columbia University Press.

Fontanella, L., Sarra, A., & Maretti, M. (2014). Gender fluidity across the world: A mul- tilevel item response theory approach. Quality and Quantity, 48(5), 2553–2568. doi:10.1007/s11135-013-9907-4

Foote, C. E., & Frank, A. W. (1999). Foucault and therapy: The disciplining of grief. In A. S. Chambron, A. Irving, & L. Epstein (Eds.), Reading Foucault for social work (pp. 157–187). New York, NY: Columbia University Press.

Fossion, P., Leys, C., Kempenaers, C., Braun, S., Verbanck, P., & Linkowski, P. (2013). Research report: Depression, anxiety and loss of resilience after multiple traumas: An illustration of a mediated moderation model of sensitization in a group of chil- dren who survived the Nazi Holocaust. Journal of Affective Disorders, 151, 973–979. doi:10.1016/j.jad.2013.08.018

Foster, J. M., & Hagedorn, W. B. (2014). A qualitative exploration of fear and safety with child victims of sexual abuse. Journal of Mental Health Counseling, 36(3), 243–262.

Fox, M., Cacciatore, J., & Lacasse, J. R. (2014). Child death in the United States: Productivity and the economic burden of parental grief. Death Studies, 38, 597–602. doi:10.1080/07481187.2013.820230

Fraiberg, S. (1987). The clinical dimensions of baby games. In L. Fraiberg (Ed.), Selected writings of Selma Fraiberg (pp. 362–387). Columbus, OH: Ohio University Press.

Frances, A. (2010). DSM-5 is a guide, not a Bible: Simply ignore its 10 worst  changes.  Retrieved from http://www.huffingtonpost.com/allen-frances/ dsm-5_b_2227626.html

Frankl, V. E. (1984). Man’s search for meaning: An introduction to logotherapy. New York, NY: Touchstone Books. (Original work published 1946)

Freed, P. J., Yanagihara, T. K., Hirsch, J., & Mann, J. J. (2009). Neural mechanisms of grief regulation. Biological Psychiatry, 66(1), 33–40. doi:10.1016/j.biopsych.2009.01.019

Freedman, M. (2014). Universities cater to a new demographic: Boomers. HBR Network. Retrieved from https://hbr.org/2014/08/universities-cater-to-a-new- demographic-boomers

Freidenfelds, L. (2013, October). Symposium on “Maternal Bodies, Fetal Bodies.” New Brunswick, NJ: Rutgers University.

Freud, E. L. (Ed.). (1961). The letters of Sigmund Freud. New York, NY: Basic Books. Freud, S. (1957). Mourning and melancholia. In J. Strachey (Ed. and Trans.), The stan-

dard edition of the complete psychological works of Sigmund Freud (Vol. 14). London, UK: Hogarth. (Original work published 1917)

Friedberg, F. (2006). Fibromyalgia and chronic fatigue syndrome: 7 proven steps to less pain and more energy. Oakland, CA: New Harbinger Publications.

Friedman, M. S., Marshal, M. P., Guadamuz, T. E., Wei, C., Wong, C. F., Saewyc, E. M., . . . Stall, R. (2011). A meta-analysis of disparities in childhood sexual abuse,  paren- tal physical abuse, and peer victimization among sexual minority and sexual nonminority individuals. American Journal of Public Health, 101(8), 1481–1494. doi:10.2105/AJPH.2009190009

References 315

Furman, E. (1996). On motherhood. Journal of the American Psychoanalytic Society, 44, 429–447. doi:10.1177/00030651060540041601

Furstenberg, F., Kennedy, S., McLoyd, V., Rumbaut, R., & Settersen, A. (2004). Growing up is harder to do. The American Sociological Association, 3(3), 33–41.

Gamino, L. A., & Moore, C. III. (2011). Grief dimensions associated with  hastened death: Clinical and ethical implications. In R. A. Neimeyer, D. L. Harris, H. R.  Winokuer,  &  G. F. Thornton (Eds.), Grief and bereavement in contemporary society: Bridging research and practice (pp. 389–400). New York, NY: Routledge.

Ganzini, L., Denneson, L. M., Press, N., Bair, M. J., Helmer, D. A., Poat, J., . . . Dobscha,  S.  K. (2013). Trust is the basis for effective suicide risk screening and assessment in veterans. Journal of General Internal Medicine, 28(9), 1215–1221. doi:10.1007/s11606-013-2412-6

Gard, T., Holzel, B. K., & Lazar, S. W. (2014). The potential effects of meditation on age- related cognitive decline: A systematic review. Annals of the New York Academy of Sciences, 1307, 89–103. doi:10.1111/nyas.12348

Gaudet, C. (2010). Pregnancy after perinatal loss: Association of grief, anxiety and attachment. Journal of Reproductive and Infant Psychology, 28(3), 240–251. doi:10.1080/02646830903487342

Gawande, A. (2014). Being mortal: Medicine and what matters in the end. New York, NY: Metropolitan Books.

Ge, X., Jin, R., Natsuaki, M. N., Gibbons, F. X., Brody, G. H., Cutrona, C. E., . . . Simons, R. L. (2006). Pubertal maturation and early substance use risks among African American children. Psychology of Addictive Behaviors, 20(4), 404–414. doi:10.1037/0893-164X.20.4.404

Gerdes, A. C., Hoza, B., Arnold, L. E., Pelham, W. E., Swanson, J. M., Wigal, T., . . . Jensen, P. S. (2007). Maternal depressive symptomatology and parenting behav- ior: Exploration of possible mediators. Journal of Abnormal Child Psychology, 35, 705–714. doi:10.1007/s10802-007-9134-3

Ghesquiere, A. (2014). “I was just trying to stick it out until I realized that I couldn’t”: A phenomenological investigation of support seeking among older adults with complicated grief. Omega, 68(1), 1–22. doi:10.2190/OM.68.1

Gianaros, P. J., Marsland, A. L., Kuan, D. H., Schirda, B. L., Jennings, J., Sheu, L. K., . . . Manuck, S. B. (2014). An inflammatory pathway links atherosclerotic cardiovascu- lar disease risk to neural activity evoked by the cognitive regulation of emotion. Biological Psychiatry, 75(9), 738–745. doi:10.1016/j.biopsych.2013.10.012

Gibson, J., Gallagher, M., & Jenkins, M. (2010). The experiences of parents readjust- ing to the workplace following the death of a child by suicide. Death Studies, 34, 500–528. doi:10.1080/07481187.2010.482879

Giedd, J. J. (1999). Human brain growth. American Journal of Psychiatry, 156, 1–4. doi:10.1176/ajp.156.1.4

Giedd, J. N., Clasen, L. S., Lenroot, R., Greenstein, D., Wallace, G. L., Ordaz,  S.,  .  .  . Chrousos, G. P. (2006). Puberty-related influences on brain development. Molecular  and Cellular Endocrinology, 254–255, 154–162. doi:10.1016/j.mce.2006. 04.016

Gifford-Smith, M. E., & Brownell, C. A. (2003). Childhood peer relationships: Social acceptance, friendships and peer networks. Journal of School Psychology, 41, 235–284. doi:10.1016/S0022-4405(03)00048-7

Gilbert, K. R., & Horsley, G. (2011). Technology and grief support in the twenty-first century: A multimedia platform. In R. A. Neimeyer, D. L. Harris, H. R. Winokuer, & G. F. Thornton (Eds.), Grief and bereavement in contemporary society: Bridging research and practice (pp. 365–374). New York, NY: Routledge.

Grief and Loss Across the Lifespan316

Gilbert, R. (2006). When adult children grieve the death of a parent: Spiritual perspectives. The Forum, ADEC, 32(2), 10.

Gilin, B. (2009). The losses of infertility. In C. A. Walter & J. L. M. McCoyd (Eds.), Grief and loss across the lifespan: A biopsychosocial perspective (pp. 194–203). New York, NY: Springer Publishing.

Gilligan, C. (1993). In a different voice: Psychological theory and women’s development. Cambridge, MA: Harvard University Press. (Original work published 1982)

Gilrane-McGarry, U., & O’Grady, T. (2011). Forgotten grievers: An exploration of the grief experiences of bereaved grandparents. International Journal of Palliative Nursing, 17(4), 170–176.

Glover, V. (2014). Maternal depression, anxiety and stress during pregnancy and child outcome; what needs to be done. Best Practice & Research Clinical Obstetrics & Gynaecology, 28, 25–35. doi:10.1016/j.bpobgyn.2013.08.017

Gluckman, P. D., & Hanson, M. A. (2006). Changing times: The evolution of puberty. Molecular and Cellular Endocrinology, 254–255, 26–31. doi:10.1016/j.mce.2006.04.005

Godfrey, R. (2006). Losing a sibling in adulthood. The Forum: ADEC, 32(1), 6–7. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York, NY:

Simon & Schuster. Goldbach, K. R. C., Dunn, D. S., Toedter, L. J., & Lasker, J. N. (1991). The effects of

gestational age and gender on grief after pregnancy loss. The American Journal of Orthopsychiatry, 61(3), 461–467. doi:10.1037/h0079261

Goldberg, A. (2012). Gay dads: Transitions to adoptive fatherhood. New York, NY: New York University Press.

Goldberg, A., Downing, J., & Richardson, H. (2009). The transition from infertility to adoption: Perceptions of lesbian and heterosexual couples. Journal of Social and Personal Relationships, 26(6–7), 938–963. doi:10.1177/0265407509345652

Goldberg, A. E., & Sayer, A. G. (2006). Lesbian couples’ relationship quality across the transition to parenthood. Journal of Marriage and Family, 68, 87–100. doi:10.1111/j.1741-3737.2006.00235.x

Goldberg, A. E., & Smith, J. Z. (2011). Stigma, social context, and mental health: Lesbian and gay couples across the transition to adoptive parenthood. Journal of Counseling Psychology, 58(1), 139–150. doi:10.1037a0013969

Goldberg, A. E., Smith, J. Z., & Kashy, D. A. (2010). Preadoptive factors predicting lesbian, gay and heterosexual couples’ relationship quality across the transition to adoptive parenthood. Journal of Family Psychology, 24(3), 221–232. doi:10.1037/a0019615

Golden, J. (2000). A tempest in a cocktail glass: Mothers, alcohol, and television, 1977–1996. Journal of Health Politics, Policy and Law, 25(3), 473–498. Retrieved from http://muse.jhu.edu/journals/jhp/summary/v025/25.3golden.html

Golden, J. (2011). Commentary: Observing the effects of alcohol abuse and preg- nancy in the late 19th century. International Journal of Epidemiology, 40, 292–293. doi:10.1093/ije/dyr005

Goldman, L. (2015). Supporting grieving children. In J. M. Sillion & T. Attig (Eds.), Death, dying, and bereavement (pp. 275–291). New York, NY: Springer Publishing.

Goldner, V. (1998). The treatment of violence and victimization in intimate relation- ships. Family Process, 37(3), 263–281. doi:10.1111/j.1545-5300.1998.00263.x

Gould, M. S., Greenberg, T., Velting, D., & Shaffer, D. (2003). Youth suicide risk and preventive interventions: A review of the past 10 years. Journal of the American Academy of  Child and Adolescent Psychiatry, 42, 386–405. doi:10.1097/01 .CHI.0000046821.95464.CF

Granic, I., O’Hara, A., Pepler, D., & Lewis, M. (2007). A dynamic systems analysis of parent-child changes associated with successful “real world” interventions for aggressive children. Journal of Abnormal Child Psychology, 35, 845–857. doi:10.1007/ s10802-007-9133-4

References 317

Green, S. E. (2007). “We’re tired, not sad”: Benefits and burdens of mothering a  child with a disability. Social Science & Medicine, 64, 150–163. doi:10.1016/j .socscimed.2006.08.025

Greenfield, D. A. (1997). Infertility and assisted reproductive technology: The role of the perinatal social worker. Social Work in Health Care, 24(3/4), 39–46. doi:10.1300/ J010v24n03_04

Greenfield, E. A., & Russell, D. (2011). Identifying living arrangements that heighten risk for loneliness in later life: Evidence from the U.S. National Social Life, Health, and Aging Project. Journal of Applied Gerontology, 30(4), 524–534. doi:10.1177/0733464810364985

Greenfield, E. A., Scharlach, A., Lehning, A. J., & Davitt, J. K. (2012). A conceptual framework for examining the promise of the NORC program and village models to promote aging in place. Journal of Aging Studies, 26, 273–284. doi:10.1016/j. jaging.2012.01.003

Greif, G. L. (2009). Buddy system: Understanding male friendships. New York, NY: Oxford University Press.

Greif, G. L. (2014). The voices of fathers in prison: Implications for family practice. Journal of Family Social Work, 17, 68–80. doi:10.1080/10522158.2013.865284

Grinyer, A., & Thomas, C. (2004). The importance of place of death in young adults with terminal cancer. Mortality, 9(2), 114–131. doi:10.1080/13576270310001659436

Grout, L. A., & Romanoff, B. D. (2000). The myth of the replacement child: Parents’ sto- ries after perinatal death. Death Studies, 24, 93–113. doi:10.1080/074811800200595

Gundel, H., O’Connor, M.-F., Littrell, F., Fort, C., & Lane, R. (2003). Functional  neuroanatomy of grief: An fMRI study. American Journal of Psychiatry, 160, 1946–1953. doi:10.1176/appi.ajp.160.11.1946

Gunnar, M. (2000). Early adversity and the development of stress reactivity and regula- tion. In C. Nelson (Ed.), The effects of adversity on neurobehavioral development: Minnesota Symposium on Child Psychology (Vol. 31, pp. 163–200). Mahwah, NJ: Lawrence Erlbaum.

Gurian, A. (2003). Mother’s blues-child blues: How maternal depression affects children. New York University Child Study Center Letter, 7(3).

Gustafsson, P. E., San Sebastian, M., Janlert, U., Theorell, T., Westerlund, H., & Hammarström, A. (2014). Life-course accumulation of neighborhood disadvan- tage and allostatic load: Empirical integration of three social determinants of health frameworks. American Journal of Public Health, 104(5), 904–910. doi:10.2105/ AJPH.2013.301707

Hahn-Holbrook, J., Holbrook, C., & Haselton, M. G. (2012). Parental precaution: Neurobiological means and adaptive ends. Neuroscience & Biobehavioral Reviews, 35, 1052–1066. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/ PMC3345294/?report=classic

Haight, B. K., & Haight, B. S. (2007). The handbook of structured life review. Baltimore, MD: Health Professions Press.

Halpern, C. T., Kaestle, C. E., & Hallfors, D. D. (2007). Perceived physical maturity, age of romantic partner, and adolescent risk behavior. Prevention Science, 8, 1–10. doi:10.1007/s11121-006-0046-1

Hamama-Raz, Y., Rosenfeld, S., & Buchbinder, E. (2010). Giving birth to life–again!: Bereaved parents’ experiences with children born following the death of an adult son. Death Studies, 34(5), 381–403. doi:10.1080/07481181003697613

Hames, C. C. (2003). Helping infants and toddlers when a family member dies. Journal of Hospice & Palliative Nursing, 5, 103–112.

Hansson, R. O., & Stroebe, M. S. (2007). Bereavement in late life: Coping, adapta- tion, and developmental influences. Washington, DC: American Psychological Association.

Grief and Loss Across the Lifespan318

Hardison, H. G., Neimeyer, R. A., & Lichstein, K. L. (2005). Insomnia and complicated grief symptoms in bereaved college students. Behavioral Sleep Medicine, 3, 99–111. doi:10.1207/s15402010bsm0302_4

Hardy, L. (2006). When kids lose parents in our war in Iraq. The Education Digest, 72, 10–12. Harrington-LaMorie, J., Carroll, B., & Beck, S. (2014). Bereavement in military families

and loss: Impact on the family unit. Presentation at 36th Annual ADEC (American Death Education & Counseling) conference, April, 2014. Baltimore, MD.

Harrington-LaMorie, J. H., & Mcdevitt-Murphy, M. E. (2011). Traumatic death in the United States military: Initiating the dialogue on war-related loss. In R.  A.  Neimeyer, D. L. Harris, H. R. Winokuer, & G. F. Thornton (Eds.), Grief and bereavement in contemporary society: Bridging research and practice (pp. 261–272). New York, NY: Routledge.

Haupt, S. (2002). Elisabeth Kübler-Ross: Facing death (videodisc and streaming resource). Boston, MA: Icarus Films.

Haw, C., Hawton, K., Niedzwiedz, C., & Platt, S. (2013). Suicide clusters: A review of risk factors and mechanisms. Suicide and Life-Threatening Behavior, 43(1), 97–108. doi:10.1111/j.1943-278X.2012.00130.x

Hawkins, K. A., Hames, J. L., Ribeiro, J. D., Silva, C., Joiner, T. E., & Cougle, J. R. (2014). An examination of the relationship between anger and suicide risk through the lens of the interpersonal theory of suicide. Journal of Psychiatric Research, 50, 59–65. doi:10.1016/j.jpsychires.2013.12.005

Hayslip, B., Blumenthal, H., & Garner, A. (2014). Health and grandparent–grandchild well-being: One-year longitudinal findings for custodial grandfamilies. Journal of Aging and Health, 26(4), 559–582. doi:10.1177/0898264314525664

Hayslip, B., & Kaminski, P. (2008). Parenting the custodial grandchild: Implications for clin- ical practice. New York, NY: Springer Publishing.

Heaton, J. (2015). Use of social comparisons in interviews about young adults’ experiences of chronic illness. Qualitative Health Research, 25, 336–347. doi:10.1177/1049732314553122

Hecker, L. L., & Sori, C. F. (2003). The parent’s guide to good divorce behavior. In C. F. Sori & L. L. Hecker (Eds.), The therapist’s notebook for children and adolescents (pp. 323–329). New York, NY: Routledge.

Heeren, G. (2011). Changing methods of disclosure. Literature review of disclosure to children with terminal illnesses, including HIV. Innovation: The European Journal of Social Sciences, 24(1/2), 199–208. doi:10.1080/13511610.2011.553506

Heineman, E. (2014). Ghostbelly. New York, NY: The Feminist Press. Henderson, J., Motoi, G., & Blampied, N. (2013). Sleeping through the night: A com-

munity survey of parents’ opinions about and expectations of infant sleep con- solidation. Journal of Paediatrics & Child Health, 49(7), 535–540. doi:10.1111/ jpc.12278

Henderson, J. M., France, K. G., & Blampied, N. M. (2011). The consolidation of infants’ nocturnal sleep across the first year of life. Sleep Medicine Reviews, 15, 211–220.

Herman, J. L. (1997). Trauma and recovery. New York, NY: Basic Books. (Original work published 1992)

Hershfield, H., Scheibe, S., Sims, T., & Carstensen, L. (2013). When feeling bad can be good: Mixed emotions benefit physical health across adulthood. Social Psychological and Personality Science, 4(1), 54–61. doi:10.1177/1948550612444616

Hill, R. (2005). Positive aging. New York, NY: Norton. Hochschild, A. R. (1979). Emotion work, feeling rules, and social structure. American

Journal of Sociology, 85(3), 551–575. Retrieved from http://www.jstor.org/ stable/2778583

Hochschild, A. R. (1983). The managed heart: Commercialization of human feeling. Berkeley, CA: University of California Press.

References 319

Hogan, N., & DeSantis, L. (1996). Basic constructs of a theory of adolescent sibling bereavement. In D. Klass, P. R. Silverman, & S. L. Nickman (Eds.), Continuing binds: New understandings of grief (pp. 235–254). Philadelphia, PA: Taylor & Francis.

Hogan, N., & Schmidt, L. (2002). Testing the grief to personal growth model using struc- tural equation modeling. Death Studies, 26, 615–634. doi:10.1080/07481180290088338

Hogan, N. S., Coolican, M., & Schmidt, L. A. (2013). Making meaning in the legacy of tissue donation for donor families. Progress in Transplantation, 23(2), 180–187. doi:10.7182/pit2013862

Hogwood, J., Campbell, T., & Butler, S. (2013). I wish I could tell you but I can’t: Adolescents with perinatally acquired HIV and their dilemmas around self-disclosure. Clinical Child Psychology and Psychiatry, 18, 44–60. doi:10.1177/1359104511433195

Holland, J., Neimeyer, R., Boelen, P., & Prigerson, H. (2009). The underlying struc- ture of grief: A taxometric investigation of prolonged and normal reactions to loss. Journal of Psychopathology and Behavioral Assessment, 31(3), 190–201. doi:10.1007/ s10862-008-9113-1

Holland, J. M., Thompson, K. L., Rozalski, V., & Lichtenthal, W. G. (2014). Bereavement- related regret trajectories among widowed older adults. Journals Of Gerontology Series B: Psychological Sciences & Social Sciences, 69B(1), 40–47. doi:10.1093/geronb/ gbt050

Holmes, T. H., & Rahe, R. H. (1967). The social readjustment rating scale. Journal of Psychosomatic Research, 11, 213–218.

Hooyman, N., & Kiyak, H. (2008). Social gerontology. Boston, MA: Allyn and Bacon. Hooyman, N., & Kramer, B. (2006). Living through loss: Interventions across the lifespan.

New York, NY: Columbia University Press. Hope, R. M., & Hodge, D. M. (2006). Factors affecting children’s adjustment to the

death of a parent: The social work professional’s viewpoint. Child and Adolescent Social Work Journal, 23, 107–126. doi:10.1007/s10560-006-0045-x

Hornjatkevyc, N. L., & Alderson, K. G. (2011). With and without : The bereavement experiences of gay men who have lost a partner to non-AIDS-related causes. Death Studies, 35(9), 801–823. doi:10.1080/07481187.2011.553502

Horowitz, A., & Wakefield, J. (2007). The loss of sadness: How psychiatry transformed nor- mal sorrow into depressive disorder. New York, NY: Oxford University Press.

Hoskins, L. M. (2010). Negotiation of health risks and risk management for young adult BRCA1/2-positive women: Implications for partnering and family formation. Unpublished doctoral dissertation, University of Maryland, College Park.

Hoskins, L. M., & Greene, M. H. (2012). Anticipatory loss and early mastectomy for young female BRCA1/2 mutation carriers. Qualitative Health Research, 22(12), 1633–1646. doi:10.1177/1049732312458182

Huffington Post. (2014a). Gray divorce is on the rise, according to new data. Retrieved from http://huffingtonpost.com/2013/06/12/gray_divorce_n_3429703 .html?utm_hp_ref=divorcestatistics

Huffington Post. (2014b). Job loss map. Retrieved from http://www.huffingtonpost .com/2014/10/30/geography-of-jobs_n_6069856.html

Huffington Post. (2015). Working poor stories. Retrieved from http://www . huffingtonpost.com/news/working-poor

Huggard, J. (2008). A national survey of the support needs of interprofessional hos- pice staff in Aotereoa/New Zealand. Master’s thesis, University of Auckland, New Zealand.

Hughes, M. E., & Waite, L. J. (2009). Marital biography and health at mid-life. Journal of Health and Social Behavior, 50, 344–358.

Hughes, P., Turton, P., Hopper, E., & Evans, C. D. H. (2002). Assessment of guidelines for good practice in psychosocial care of mothers after stillbirth: A cohort study. Lancet, 360(9327), 114–118.

Grief and Loss Across the Lifespan320

Hultman, T., Reder, E. R., & Dahlin, C. (2008). Improving psychological and psychiatric aspects of palliative care: The National Consensus Project and the National Quality Forum Preferred Practices for Palliative and Hospice Care. Omega: Journal of Death and Dying, 57(4), 323–339. doi:10.2190/OM.57.4.a

Huth-Bocks, A. C., Theran, S. A., Levendosky, A. A., & Bogat, G. A. (2011). A  social-contextual understanding of concordance and discordance between maternal prenatal representations of the infant and mother-infant attachment. Infant Mental Health Journal, 32(4), 405–426. doi:10.1002/imhj.20304

Ibarra, H. (2003). Working identity. Boston, MA: Harvard Business School Press. Iglesias, E., & Courmier, S. (2002). The transformation of girls to women: Finding voice

and developing strategies for liberation. Journal of Multicultural Counseling and Development, 30, 259–271.

Inside the Brains of Smart Kids. (2006, April 1). New Scientist, 190(2545), p. 21. Iverson, J. M., & Goldin-Meadow, S. (2005). Gesture paves the way for language devel-

opment. Psychological Science, 16(5), 367–371. doi:10.1111/j.0956-7976.2005.01542.x Jablonski, J., & Martino, S. (2013). A qualitative exploration of emerging adults’ and

parents’ perspectives on communicating adulthood status. Qualitative Report, 18(37), 1–12. Retrieved from http://www.nova.edu/ssss/QR/QR18/jablonski73.pdf

Jack, D. C. (1991). Silencing the self: Women and depression. Cambridge, MA: Harvard University Press.

Jackson, C. (2013). Something more to say. Therapy Today, 24(5), 10–13. Janoff-Bulman, R. (1989). Assumptive worlds and the stress of traumatic events:

Applications of the schema construct. Social Cognition, 7, 113–136. doi:10.1521/ soco.1989.7.2.113

Janoff-Bulman, R. (1992). Shattered assumptions: Towards a new psychology of trauma. New York, NY: The Free Press.

Jiang, R., Chou, C., & Tsai, P. (2006). The grief reactions of nursing students related to the sudden death of a classmate. Journal of Nursing Research, 14(4), 279–284.

Johnson, C. M. (2010). When African American teen girls’ friends are murdered: A  qualitative study of bereavement, coping, and psychosocial consequences. Families in Society, 91(4), 364–370. doi:10.1606/1044-3894.4042

Johnson, H., Kent, A., & Yale, E. (2012). Examination of identity and romantic relation- ship intimacy associations with well-being in emerging adulthood. Identity, 12(4), 296–319. doi:10.1080/15283488.2012.716381

Jones, C. H. D., Owens, J. A., & Pham, B. (2013). Can a brief educational interven- tion improve parents’ knowledge of healthy children’s sleep? A pilot-test. Health Education Journal, 72, 601–610. doi:10.1177/0017896912464606

Jordan, J. R., & McIntosh, J. L. (2011). Is suicide bereavement differ- ent?  Perspectives  from  research and practice. In R. A. Neimeyer, D. L. Harris, H. R. Winokuer, & G. F. Thornton (Eds.), Grief and bereavement in contemporary soci- ety: Bridging research and practice (pp. 223–234). New York, NY: Routledge.

Jordan, J. R., & Neimeyer, R. A. (2003). Does grief counseling work? Death Studies, 27, 765–786. doi:10.1080/0748118039023336

Jurkovic, G. J. (1997). Lost childhoods: The plight of the parentified child. New York, NY: Brunner/Mazel.

Kabat-Zinn, J. (1982). An outpatient program in behavioral medicine for chronic pain patients based on the practice of mindfulness meditation. General Hospital Psychiatry, 4, 33–47. doi:10.1016/0163-8343(82)90026-3

Kabat-Zinn, J. (1990). Full catastrophe living: Using the wisdom of your mind to face stress, pain and illness. New York, NY: Dell.

Kamysheva, E., Skouteris, H., Wertheim, E., Paxton, S., & Milgrom, J. (2010). A prospec- tive investigation of the relationships among sleep quality, physical symptoms,

References 321

and depressive symptoms during pregnancy. Journal of Affective Disorders, 123, 317–320. doi:10.1016/j.jad.2009.09.015

Kanelis, B. V., Kostanski, M., Komesaroff, P. A., & Stojanovska, L. (2009). Being in the script of menopause: Mapping the complexities of coping strategies. Qualitative Health Research, 19, 30–41. doi:10.1177/1049732308327352

Kanter, J. (2007). Compassion fatigue and secondary traumatization: A second look. Clinical Social Work Journal, 35(4), 289–293. doi:10.1007/s10615-007-0125-1

Kaplow, J. B., Layne, C. M., Saltzman, W. R., Cozza, S. J., & Pynoos, R. S. (2013a). Using multidimensional grief theory to explore the effects of deployment, reintegration, and death on military youth and families. Clinical Child Family Psychological Review, 16, 322–340. doi:10.1007/s10567-013-0143-1

Kaplow, J. B., Shapiro, D. N., Wardecker, B. M., Howell, K. H., Abelson, J. L., Worthman,  C. M., . . . Prossin, A. R. (2013b). Psychological and environmental correlates of HPA Axis functioning in parentally bereaved children: Preliminary findings. Journal of Traumatic Stress, 26(2), 233–240. doi:10.1002/jts.21788

Karel, M. J., Gatz, M., & Smyer, M. A. (2012). Aging and mental health in the decade ahead: What psychologists need to know. American Psychologist, 67(3), 184–198. doi:10.1037/a0025393

Katz, J., & Schneider, M. E. (2013). Casual hook up sex during the first year of college: Prospective associations with attitudes about sex and love relationships. Archives of Sexual Behavior, 42(8), 1451–1462. doi:10.1007/s10508-013-0078-0

Kelly, J. F., Stout, R. L., Greene, M., & Slaymaker, V. (2014). Young adults, social net- works, and addiction recovery: Post treatment changes in social ties and their role as a mediator of 12-step participation. PLoS ONE, 9(6), 1–7. doi:10.1371/journal .pone.0100121

Kendler, K. S., Myers, M. D., & Zisook, M. S. (2008). Does bereavement related depres- sion differ from major depression associated with other stressful life events? American Journal of Psychiatry, 165, 1449–1455. doi:10.1176/appi.ajp.2008.07111757

Kenen, R., Ardern-Jones, A., & Eeles, R. (2006). “Social separation” among women under 40 years of age diagnosed with breast cancer and carrying a BRCA1 or BRCA2 mutation. Journal of Genetic Counseling, 15, 149–162. doi:10.1007/s10897-005-9015-2

Kiecolt-Glaser, J. K., & Newton, T. L. (2001). Marriage and health: His and hers. Psychological Bulletin, 127, 472–503. doi:10.1037//0033-2909.127.4.472

Kim, S. H. (2009). The influence of finding meaning and worldview of accepting death on anger among bereaved older spouses. Aging and Mental Health, 13 (1), 38–45. doi:10.1080/1 360860802154487

Kirton, A., & deVeber, G. (2013). Life after perinatal stroke. Stroke, 44, 3265–3271. doi:10.1161/STROKEAHA.113.000739

Kitts, R. L. (2005). Gay adolescents and suicide: Understanding the association. Adolescence, 40, 163–181.

Kitzinger, S. (2006). Birth crisis. Abingdon: Routledge. Klass, D. (1986–1987). Marriage and divorce among bereaved parents in a self-help

group. Omega, 17, 237–249. Klass, D. (2005). The inner representation of the dead child in the psychic and social

narratives of bereaved parents. In R. Neimeyer (Ed.), Meaning reconstruction & the experience of loss (pp. 77–94). Washington, DC: American Psychological Association.

Klass, D. (2013). Sorrow and solace: Neglected areas in bereavement research. Death Studies, 37, 597–616. doi:10.1080/07481187.2012.673535

Klass, D., Silverman, P. R., & Nickman, S. L. (Eds.). (1996). Continuing bonds: New under- standings of grief. Washington, DC: Taylor & Francis.

Klaus, M. H., & Kennel, J. H. (1976). Maternal-infant bonding. Saint Louis, MO: C.V. Mosby.

Grief and Loss Across the Lifespan322

Kleiman, K. (2008). Therapy and the postpartum woman: Notes on healing postpartum depression for clinicians and the women who seek their help. New York, NY: Routledge.

Kluger, J. (2014). A preemie revolution. (Cover story). Time, 183(21), 24–31. Koch, H. J. (2013). Psychophysiological concepts of stress induced cardiomyopathy

with broken heart syndrome as a paradigm. Archives of Psychiatry and Psychotherapy, 15(2), 37–43. doi:10.12740/APP/18442

Kolomer, S., & McCallion, P. (2005). Depression and caregiver mastery in grandfa- thers caring for their grandchildren. International Journal of Aging and Human Development, 60(4), 283–294. doi:10.2190/K8RJ-X0AL-DU34-9VVH

Komen, S. B. (2015). Outcomes in older women with breast cancer. Retrieved from http://ww5.komen.org/Breast-Cancer-News/Outcomes-in-Older-Women-with- Breast-Cancer.html

Konigsberg, R. D. (2011). The truth about grief: The myth of its five stages and the new science of loss. New York, NY: Simon & Schuster.

Koopmans, L., Wilson, T., Cacciatore, J., & Flenady, V. (2013). Support for mothers, fathers and families after perinatal death. Cochrane Database of Systematic Review, 6, Art. No.: CD000452. doi:10.1002/14651858.CD000452.pub3

Kroll, B. (2002). Children and divorce. In N. Thompson (Ed.) Loss and grief: A guide for human services practitioners (pp. 111–124). New York, NY: Palgrave.

Kubler-Ross, E. (1969). On death and dying: What the dying have to teach their doctors, nurses, clergy and their own families. New York, NY: Macmillan.

Lacasse, J. R., & Cacciatore, J. (2014). Prescribing of psychiatric medication to bereaved parents following perinatal/neonatal death: An observational study, Death Studies, 38, 589–596. doi:10.1080/07481187.2013.820229

Lackaye, T., & Margalit, M. (2008). Self-efficacy, loneliness, effort, and hope: Developmental differences in the experiences of students with learning disabili- ties and their non-learning disabled peers at two age groups. Learning Disabilities: A Contemporary Journal, 6(2), 1–20.

Ladd-Taylor, M., & Umansky, L. (Eds.). (1998). “Bad” mothers: The politics of blame in twentieth century America. New York, NY: New York University Press.

Lambert, M. J., & Barley, D. E. (2002). Research summary on the therapeutic relation- ship and psychotherapy outcome. In J. C. Norcross (Ed.), Psychotherapy relation- ships that work (pp. 17–32). New York, NY: Oxford University Press.

Larson, D., & Hoyt, W. T. (2007). What has become of grief counseling? An evalua- tion of the empirical foundations of the new pessimism. Professional Psychology: Research and Practice, 38(4), 347–355. doi:10.1037/0735-7028.38.4.347

LaSala, M. C. (2014). Condoms and connection: Parents, gay and bisexual youth, and HIV risk. Journal of Marital and Family Therapy, 1–14. doi:10.1111/jmft.12088

Lasker, J. N., & Toedter, L. J. (1991). Acute vs. chronic grief: The case of pregnancy loss. The American Journal of Orthopsychiatry, 61(4), 510–522. doi:10.1037/h0079288

Latorre, J. M., Serrano, J. P., Ricarte, J., Bonete, B., Ros, L., & Sitges, E. (2015). Life review based on remembering specific positive events in active aging. Journal of Aging and Health, 27(1), 140–157. doi:10.1177/0898264314541699

Lavelle, B., & Smock, P. (2012). Divorce and women’s risk of health insurance loss. Journal of Health and Social Behavior, 53(4), 413–431. doi:10.1177/0022146512465758

Lawton, M. (2014, July 10). Role reversal. Franklin Park Herald-Journal with News of North Lake (IL), p. 7.

Layne, L. L. (2003). Motherhood lost. New York, NY: Routledge. Lazzarino, A. I., Hamer, M., Gaze, D., Collinson, P., & Steptoe, A. (2013). Clinical

research: The association between cortisol response to mental stress and high- sensitivity cardiac troponin T plasma concentration in healthy adults. Journal of the American College of Cardiology, 62, 1694–1701. doi:10.1016/j.jacc.2013.05.070

References 323

Le Doux, J. (2003). The emotional brain, fear, and the amygdala. Cellular and Molecular Neurobiology, 23(4/5), 727–738. doi:10.1023/A:1025048802629

Lench, H. C., & Chang, E. S. (2007). Belief in an unjust world: When beliefs in a just world fail. Journal of Personality Assessment, 89(2), 126–135. doi:10.1080/00223890701468477

Lenroot, R. K., & Giedd, J. J. (2006). Brain development in children and adolescents: Insights from anatomical magnetic resonance imaging. Neuroscience & Biobehavioral Reviews, 30, 718–729. doi:10.1016/j.neubiorev.2006.06.001

Leon, C., & Shdaimah, C. S. (2012). JUSTifying Scrutiny: State power in prostitution diver- sion programs. Journal of Poverty, 16, 250–273. doi:10.1080/10875549.2012.695539

Leridon, H. (2004). Can assisted reproduction technology compensate for the natu- ral decline in fertility with age? A model assessment. Human Reproduction, 19(7), 1548–1553. doi:10.1093/humrep/deh304

Lerner, M. J. (1980). The belief in a just world: A fundamental delusion. New York, NY: Plenum Press.

Lerner, M. J. (1997). What does the belief in a just world protect us from: The dread of death or the fear of understanding suffering? Psychological Inquiry, 8(1), 29–32. Retrieved from http://www.jstor.org/stable/1449122

Levine, S. (2005). Inventing the rest of our lives: Women in second adulthood. New York, NY: Penguin Group.

Levinson, D., & Levinson, J. (1996). The seasons of a woman’s life. New York, NY: Alfred A. Knopf.

Lewis, M., Haviland-Jones, J. M., & Barrett, L. F. (2008). The handbook of emotion (3rd ed.). New York, NY: Guilford.

Lichtenthal, W. G., Neimeyer, R. A., Currier, J. M., Roberts, K., & Jordan, N. (2013). Cause of death and the quest for meaning after the loss of a child. Death Studies, 37(4), 311–342. doi:10.1080/07481187.2012.673533

Liedloff, J. (1985). The continuum concept: Allowing human nature to work successfully. Jackson, TN: Perseus Books Group.

Life Planning Network. (2013). Live smart after 50: The expert’s guide to life planning for uncertain times. Boston, MA: Life Planning Network.

Lind, R. F., Pruitt, R. L., & Greenfield, D. A. (1989). Previously infertile couples and the newborn intensive care unit. Health & Social Work, 14, 127–133.

Lindemann, E. (1944). Symptomatology and management of acute grief. American Journal of Psychiatry, 101, 141–148.

Lindqvist, P., Johansson, L., & Karlsson, U. (2008). In the aftermath of teenage suicide: A qualitative study of the psychosocial consequences for the surviving family members. BMC Psychiatry, 81–7. doi:10.1186/1471-244X-8-26

Linn-Gust, M. (2006). Mode of death and the effects on sibling grief. The Forum: Association for Death Education and Counseling, 32(1), 1–3.

Liu, I. C., & Chiu, C. H. (2009). Case-control study of suicide attempts in the elderly. International Psychogeriatrics, 21, 896–902. doi:10.1017/S1041610209990056

Lloyd, G. M., Sailor, J. L., & Carney, W. (2014). A phenomenological study of postdi- vorce adjustment in midlife. Journal of Divorce & Remarriage, 55(6), 441–450. doi:10 .1080/10502556.2014.931757

Lloyd, M. (2002). A framework for working with loss. In N. Thompson (Ed.), Loss and grief: A guide for human services practitioners (pp. 208–220). London, UK: Palgrave.

Lopez Levers, L. (2012). Trauma counseling: Theories and interventions. New York, NY: Springer Publishing.

Loretto, W., & Vickerstaff, S. (2013). The domestic and gendered context for retirement. Human Relations, 66(1), 65–86. doi:10.1177/0018726712455832

Lubas, M., & De Leo, G. (2014). Online grief support groups: Facilitators’ attitudes. Death Studies, 38(8), 517–521. doi:10.1080/07481187.2013.873840

Grief and Loss Across the Lifespan324

Lumbiganon, P., Laopaiboon, M., Intarut, N., Vogel, J., Souza, J., Gülmezoglu, A., . . . Mori, R. (2014). Indirect causes of severe adverse maternal outcomes: A second- ary analysis of the WHO Multicountry Survey on Maternal and Newborn Health. BJOG: An International Journal of Obstetrics & Gynaecology, 121(Suppl. 1), 32–39. doi:10.1111/1471-0528.12647

Lurie, A., & Monahan, K. (2015). Humor, aging, and life review: Survival through the use of humor. Social Work in Mental Health, 13(1), 82–91. doi:10.1080/15332985.20 14.884519

Lyerly, A. D. (2013). A good birth: Finding the positive and profound in your childbirth experi- ence. New York, NY: Penguin Group.

Maata, K. (2011). The throes and relief of divorce. Journal of Divorce and Remarriage, 52, 415–434. doi:10.1080/10502556.2011.592425

Maciejewski, P. K., Zhang, B., Block, S. D., & Prigerson, H. G. (2007). An empirical examination of the stage theory of grief. Journal of the American Medical Association (JAMA), 297, 716–723. doi:10.1001/jama.297.7.716

MacKinlay, E., & Trevitt, C. (2010). Living in aged care: Using spiritual reminiscence to enhance meaning in life for those with dementia. International Journal of Mental Health Nursing, 19(6), 394–401. doi:10.1111/j.1447-0349.2010.00684.x

Mahler, M. S., Pine, F., & Bergman, A. (1975). The psychological birth of the human infant. New York, NY: Basic Books.

Malee, K. M., Tassiopoulos, K., Huo, Y., Siberry, G., Williams, P. L., Hazra, R., . . . Pediatric HIV/AIDS Cohort Study Team (2011). Mental health functioning among children and adolescents with perinatal HIV infection and perinatal HIV expo- sure. AIDS Care, 23, 1533–1544. doi:10.1080/09540121.2011.575120

Malone, P. A. (2012). The impact of peer death on adolescent girls: An efficacy study of the adolescent grief and loss group. Social Work With Groups, 35, 35–49. doi:10.108 0/01609513.2011.561423

Manor, I., Vincent, M., & Tyano, S. (2004). The wish to die and the wish to commit sui- cide in the adolescent: Two different matters? Adolescence, 39, 279–293.

Maple, M., Edwards, H., Plummer, D., & Minichiello, V. (2010). Silenced voices: Hearing the stories of parents bereaved through the suicide death of a young adult child. Health & Social Care in the Community, 18(3), 241–248. doi:10.1111/j.1365-2524.2009.00886.x

Maple, M., Edwards, H. E., Minichiello, V., & Plummer, D. (2013). Still part of the family: The importance of physical, emotional and spiritual memorial places and spaces for parents bereaved through the suicide death of their son or daughter. Mortality, 18(1), 54–71. doi:10.1080/13576275.2012.755158

Marcia, J. E. (1966). Development and validation of ego identity status. Journal of Personality and Social Psychology, 3, 551–558.

Marcia, J. E. (1980). Identity in adolescence. In J. Adelson (Ed.), Handbook of adolescent psychology (pp. 159–187). New York, NY: Wiley.

Marino, P. (1998). The effects of cumulative grief in the nurse. Journal of Intravenous Nursing, 21(2), 101–104.

Markese, S. (2011). Dyadic trauma in infancy and early childhood: A review of the lit- erature. Journal of Infant, Child, and Adolescent Psychotherapy, 10(2–3), 341–378. doi: 10.1080/15289168.2011.600214

Markowitz, M. S. (2007). Allowing adolescents to make life-and-death decisions about themselves; rights and responsibilities of adolescents, families, and the state. Dissertation Abstracts International Section A: Humanities and Social Sciences, 67(9-A), 3433.

Marks, N. F., Jun, H., & Song, J. (2007). Death of parents and adult psychological and physical well-being: A prospective U.S. national study. Journal of Family Issues, 28(12), 1611–1638. doi:10.1177/0192513X07302728

References 325

Markus, H., & Nurius, P. (1986). Possible selves. American Psychologist, 41(9), 954–969. Marshall, H. (2004). Mid-life loss of parents: From adult child to orphan. Ageing

International, 29(4), 351–367. doi:10.1007/s12126-004-1004-5 Marshall, B., & Davies, B. (2011). Bereavement in children and adults following the

death of a sibling. In R. A. Neimeyer, D. L. Harrris, H. R. Winokuer, & G. F. Thornton (Eds.), Grief and bereavement in contemporary society: Bridging research and practice (pp. 107–116). New York, NY: Routledge.

Martin, L. H., Gutman, H., & Hutton, P. H. (Eds.). (1988). Technologies of the self : A semi- nar with Michel Foucault. Amherst, MA: University of Massachusetts Press.

Martin, T. L. (2002). Disenfranchising the brokenhearted. In K. J. Doka (Ed.),  Disenfranchised grief: New directions, challenges and strategies for practice (pp. 233–250). Champaign, IL: Research Press.

Marwit, S. J., & Klass, D. (1996). Grief and the role of the inner representation of the deceased. In D. Klass, P. R. Silverman, & S. L. Nickman (Eds.), Continuing bonds (pp. 297–310). Philadelphia, PA: Taylor & Francis.

Massat, C., Moses, H., & Ornstein, E. (2008). Grief and loss in schools: A perspective for school social workers. School Social Work Journal, 33(1), 80–96.

Matthews, T. J., & Hamilton, B. (2009). Delayed childbearing: More women are having their first child later in life. NCHS Data Brief, 21, 1–8. Washington, DC: National Center on Health Statistics, US Dept. of Health and Human Services, Centers for Disease Control and Prevention.

Mattson, B. J., Williams, S. E., Rosenblatt, J. S., & Morrell, J. I. (2003). Preferences of cocaine- or pup-associated chambers differentiates otherwise behaviorally identical postpar- tum maternal rats. Psychopharmacology, 167, 1–8. doi:10.1007/s00213-002-1351-4

Mauger, B. (1998). Songs from the womb: Healing the wounded mother. Dublin, Ireland: The Collins Press.

Maughan, A., Cicchetti, D., Toth, S. L., & Rogosch, F. A. (2007). Early-occurring mater- nal depression and maternal negativity in predicting young children’s emotion regulation and socioemotional difficulties. Journal of Abnormal Child Psychology, 35, 685–703. doi:10.1007/s10802-007-9129-0

McCann, I. L., & Perlman, L. A. (1990). Vicarious traumatization: A framework for understanding the psychological effects of working with victims. Journal of Traumatic Stress, 3(1), 131–147. doi:10.1007/BF00975140

McCorkel, J. (2013). Breaking women: Gender, race, and the new politics of imprisonment. New York, NY: New York University Press.

McCoyd, J. L. M. (2007). Pregnancy interrupted: Loss of a desired pregnancy after diag- nosis of fetal anomaly. Journal of Psychosomatic Obstetrics & Gynecology, 28(1), 37–48. doi:10.1080/01674820601096153

McCoyd, J. L. M. (2008). “I’m not a saint”: Burden assessment as an unrecognized factor in prenatal decision making. Qualitative Health Research, 18(11), 1489–1500. doi:0.1177/1049732308325642

McCoyd, J. L. M. (2009a). Discrepant feeling rules and unscripted emotion work: Women terminating desired pregnancies due to fetal anomaly. American Journal of Orthopsychiatry, 79(4), 441–451. doi:10.1037/a0010483

McCoyd, J. L. M. (2009b). What do women want?: Experiences and reflections of women after prenatal diagnosis and termination for anomaly. Health Care for Women International, 30(6), 507–535. doi:10.1080/07399330902801278

McCoyd, J. L. M. (2010a). Authoritative knowledge, the technological imperative and women’s responses to prenatal diagnostic technologies. Culture, Medicine and Psychiatry, 34(4), 590–614. doi:10.10071511013-010-9189-4

McCoyd, J. L. M. (2010b). Women in no man’s land: The U.S. abortion debate and women terminating desired pregnancies due to fetal anomaly. British Journal of Social Work, 40, 133–153. doi:10.1093/bjsw/bcn080

Grief and Loss Across the Lifespan326

McCoyd, J. L. M. (2013). Preparation for prenatal decision-making: A baseline of knowledge and reflection in women participating in prenatal screening. Journal of Psychosomatic Obstetrics & Gynecology, 34(1), 3–8. doi:10.3109/0167482X.2012.757590

McCoyd, J. L. M. (2014). Determinism or influence: New information on genetics and behavioral health. NAPSW Forum, 34(1), 1, 4–7.

McCoyd, J. L. M. (in press). Critical aspects of decision-making and grieving after diag- nosis of fetal anomaly. In J. P. Galst & M. S. Verp (Eds.), Prenatal and preimplantation diagnosis: The burden of choice. New York, NY: Springer Publishing.

McCoyd, J.L.M. & Walter, C. A. (in press). Grief and loss across the lifespan: A biopsychoso- cial approach (2nd edition). New York: Springer Publishing.

McFerran, K., Roberts, M., & O’Grady, L. (2010). Music therapy with bereaved teenagers: A mixed methods perspective. Death Studies, 34(6), 541–565. doi:10.1080/07481181003765428

McGeorge, C., & Carlson, T. S. (2011). Deconstructing heterosexism: Becoming an LGB affirmative heterosexual couple and family therapist. Journal of Marital and Family Therapy, 37, 14–26. doi:10.1111/j.1752-0606.2009.00149.x

McGoldrick, M., & Carter, E. A. (1982). The family life cycle. In F. Walsh (Ed.), Normal family processes (pp. 167–195). New York, NY: Guilford.

Meeus, W., van de Schoot, R., Keijsers, L., & Branjis, S. (2012). Identity statuses as devel- opmental trajectories: A five wave longitudinal study in early to middle and mid- dle to late adolescence. Journal of Youth and Adolescence, 41, 1008–1021. doi:10.1007/ s10964-011-9730-y

Mehl-Madrona, L. (2010). Healing the mind through the power of story: The promise of nar- rative psychiatry. Rochester, VT: Bear & Company.

Melham, N. M., Moritz, G., Walker, M., Shear, M. K., & Brent, D. (2007). Phenomenology and correlates of complicated grief in children and adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 46, 493–499. doi:10.1097/ chi.0b013e31803062a9

Menting, B., van Lier, P. C., & Koot, H. M. (2011). Language skills, peer rejection, and the development of externalizing behavior from kindergarten to fourth grade. Journal of Child Psychology & Psychiatry, 52(1), 72–79. doi:10.1111/j.1469-7610.2010.02279.x

Milo, E. M. (2005). The death of a child with a developmental disability. In R. Neimeyer (Ed.), Meaning reconstruction & the experience of loss (pp. 113–134). Washington, DC: American Psychological Association.

Mitchell, L. M., Stephenson, P. H., Cadell, S., & MacDonald, M. E. (2012). Death and grief on-line: Virtual memorialization and changing concepts of childhood death and parental bereavement on the Internet. Health Sociology Review, 21(4), 413–431.

Montpetit, M. A., & Bergeman, C. S. (2010). The self-concept and conjugal loss: Evidence for structural change. Death Studies, 34, 606–624. doi:10.1080/07481187.2010.495522

Moore, T. H. M., Zammit, S., Lingford-Hughes, A., Barnes, T. R. E., Jones, P. B., Burke, M., . . . Lewis, G. (2007). Cannabis use and risk of psychotic or affective men- tal health outcomes: A systematic review. The Lancet, 370, 319–327. doi:10.1016/ S0140-6736(07)61162-3

Morse, J. M., Wilson, S., & Penrod, J. (2000). Mothers and their disabled chil- dren:  Refining the concept of normalization. Health Care for Women International, 21, 659–676. doi:10.1080/073993300300340501

Moss, M., Moss, S., & Hansson, R. (2001). Bereavement and old age. In M. S. Stroebe & R. O. Hansson (Eds.), Handbook of bereavement research: Consequences, coping and care (pp. 241–260). Washington, DC: American Psychological Association.

Munch, S. (2002a). Chicken or the egg? The biological-psychological controversy surrounding hyperemesis gravidarum. Social Science & Medicine, 55, 1267–1278. doi:10.1016/S0277-9536(01)00239-8

References 327

Munch, S. (2002b). Women’s experiences with a pregnancy complication: Causal explanations of hyperemesis gravidarum. Social Work in Health Care, 36(1), 59–76. doi:10.1300/J010v36n01_05

Munch, S. (2009). Hyperemesis gravidarum: A complication of pregnancy. In C. A. Walter & J. L. M. McCoyd (Eds.), Grief and loss across the lifespan: A biopsycho- social perspective (pp. 49–57). New York, NY: Springer Publishing.

Munson, C., & Daley, J. G. (2013). Social work practice in the military. New York, NY: Routledge.

Murias, K., Brooks, B., Kirton, A., & Iaria, G. (2014). A review of cognitive outcomes in children following perinatal stroke. Developmental Neuropsychology, 39(2), 131–157. doi:10.1080/87565641.2013.870178

Murphy, S. A., Johnson, L. C., Chung, I.-J., & Beaton, R. D. (2003a). The prevalence of PTSD following the violent death of a child and predictors of change 5 years later. Journal of Traumatic Stress, 16(1), 17–25.

Murphy, S. A., Johnson, L. C., Wu, L., Fan, J. J., & Lohan, J. (2003b). Bereaved par- ents’ outcomes 4 to 60 months after their children’s deaths by accident, suicide, or homicide: A comparative study demonstrating differences. Death Studies, 27, 39–61. doi:10.1080/0748_86390136919

Naef, R., Ward, R., Mahrer-Imhof, R., & Grande, G. (2013). Characteristics of the bereavement experience of older persons after spousal loss: An integrative review. International Journal of Nursing Studies, 50, 1108–1121. doi:10.1016/ j.ijnurstu.2012.11.026

Narcotics Anonymous. (2009). Member Survey. Retrieved from http://www.na.org/ admin/include/spaw2/uploads/pdf/NA_membership_survey.pdf

National Caregiver’s Library. (2015). Caregiver’s Resources. Retrieved from http:// www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp- hospice/hospice-vs- palliative-care-article.aspx

National Center for Health Statistics. (2010). Health, United States, 2010: With special feature on death and dying. Hyattsville, MD. 2011. Retrieved from http://www .cdc.gov/nchs/data/hus/hus10.pdf

National Child Traumatic Stress Network. (2007). The courage to remember: Childhood traumatic grief curriculum guide. Rockville, MD: U.S. Department of Health and Human Services.

National Scientific Council on the Developing Child. (2007). The science of early childhood development: Closing the gap on what we know and what we do. Retrieved from http://developingchild.harvard.edu/resources/ reports_and_working_papers/science_of_early_childhood_development/

Nehari, M., Grebler, D., & Toren, A. (2007). A voice unheard: grandparents’ grief over children who died of cancer. Mortality, 12(1), 66–78. doi:10.1080/ 13576270601088475

Neimeyer, R. (1998). Lessons of loss: A guide to coping. New York, NY: McGraw-Hill. Neimeyer, R. (2005–2006). Complicated grief and the quest for meaning: A constructiv-

ist contribution. Omega: Journal of Death and Dying, 52(1), 37–52. Neimeyer, R. A. (2001). Meaning reconstruction & the meaning of loss. Washington, DC:

American Psychological Association. Neimeyer, R. A., & Anderson, A. (2002). Meaning reconstruction theory. In N. Thompson

(Ed.), Loss and grief (pp. 45–64). New York, NY: Palgrave. Neimeyer, R. A., Baldwin, S. A., & Gillies, J. (2006). Continuing bonds and reconstructing

meaning: Mitigating complications in bereavement. Death Studies, 30, 715–738. doi:10.1080/07481180600848322

Neimeyer, R. A., Klass, D., & Dennis, M. R. (2014). A social constructionist account of grief: Loss and the narration of meaning. Death Studies, 38(8), 485–498. doi:10.1080/ 07481187.2014.913454

Grief and Loss Across the Lifespan328

Neimeyer, R. A., Laurie, A., Mehta, T., Hardison, H., & Currier, J. M. (2008). Lessons of loss: Meaning-making in bereaved college students. In H. Servaty-Seib & D. Taub (Eds.), Assisting bereaved college students (pp. 27–39). San Francisco, CA: Jossey-Bass.

Neimeyer, R., Prigerson, H., & Davies, B. (2002). Mourning and meaning. American Behavioral Scientist, 46(2), 235–251. doi:10.1177/000276402236676

Nelson, K. B. (2007). Perinatal ischemic stroke. Stroke, 38(part 2), 742–745. doi:10.1161/01 .STR.0000247921.97794.5e

Newman, B., & Newman, P. (2006). Development through life: A psychosocial experience. Belmont, CA: Thomson (Wadsworth).

Newton, C. S. (2012). The use of support and coping skills among emerging adults following parental loss. Master of Social Work Clinical Research Papers (Paper No. 67). Retrieved from http://sophia.stkate.edu/cgi/viewcontent .cgi?article=1067&context=msw_papers

Nguyen, H. T., & Scott, A. N. (2013). Self-concept and depression among children who experienced the death of a family member. Death Studies, 37, 197–211. doi:10.1080/ 07481187.2011.634085

Nickerson, A., Liddell, B. J., Maccallum, F., Steel, Z., Silove, D., & Bryant, R. A. (2014). Posttraumatic stress disorder and prolonged grief in refugees exposed to trauma and loss. BMC Psychiatry, 14(1), 1–19. doi:10.1186/1471-244X-14-106

Nixon, K. L., Radtke, H. L., & Tutty, L. M. (2013). “Every day it takes a piece of you away”: Experiences of grief and loss among abused mothers involved with child protective services. Journal of Public Child Welfare, 7, 172–193. doi:10.1080/15548732 .2012.715268

Normand, C. L., Silverman, P. R., & Nickman, S. L. (1996). Bereaved children’s chang- ing relationships with the deceased. In D. Klass, P. R. Silverman, & S. L. Nickman (Eds.), Continuing bonds (pp. 87–111). Philadelphia, PA: Taylor & Francis.

Norton, M. I., & Gino, F. (2014). Rituals alleviate grieving for loved ones, lovers, and lotteries. Journal of Experimental Psychology: General, 143(1), 266–272. doi:10.1037/ a0031772

Nseir, S., & Larkey, L. (2013). Interventions for spousal bereavement in the older adult: An evidence review. Death Studies, 37, 495–512. doi:10.1080/07481187.2011.649941

Oates, J. C., & O’Rourke, M. (2011, February 26). Why we write about grief. Retrieved  from http://www.nytimes.com/2011/02/27/weekinreview/27grief .html?pagewanted=all&_r=0

Obeidallah, D. A., Brennan, R. T., Brooks-Gunn, J., Kindlon, D., & Earls, F. (2000). Socioeconomic status, race, and girls’ pubertal maturation: Results from the project on human development in Chicago neighborhoods. Journal of Research on Adolescence, 10, 443–464.

O’Connor, M., Wellisch, D. K., Stanton, A. L., Eisenberger, N. I., Irwin, M. R., & Lieberman, M. D. (2008). Craving love? Enduring grief activates brain’s reward center. Neuroimage, 42, 969–972. doi:10.1016/j.neuroimage.2008.04.256

O’Connor, M-F., Gundel, H., McRae, K., & Lane, R. (2007). Baseline vagal tone predicts BOLD response during elicitation of grief. Neuropsychopharmacology, 32, 2184–2189. doi:10.1038/sj.npp.1301342

O’Connor, M-F., Schultze-Florey, C. R., Irwin, M. R., Arevalo, J. M. G., & Cole. S. W. (2014). Divergent gene expression responses to Complicated Grief and non- complicated grief. Brain, Behavior, and Immunity, 37, 78–83. doi.org/10.1016/ j.bbi.2013.12.017

Odent, M. (2009). The masculinisation of the birth environment. Journal of Prenatal and Perinatal Psychology and Health, 23(3), 185–191.

Oktay, J., & Walter, C. (1991). Breast cancer in the life course: Women’s experiences. New York, NY: Springer Publishing.

References 329

Oktay, J. S. (2005). Breast cancer: Daughters tell their stories. Binghamton, NY: Haworth. Okun, B., & Nowinski, J. (2011). Saying goodbye: How families can find renewal through

loss. New York, NY: Berkley Books. Olshansky, S. (1962). Chronic sorrow: A response to having a mentally defective child.

Social Casework, 43, 190–193. Oltjenbruns, K. A. (1996). Death of a friend during adolescence: Issues and impact.

In C. A. Corr & D. E. Balk (Eds.), Handbook of adolescent death and bereavement (pp. 196–215). New York, NY: Springer Publishing.

O’Neill, K. R., Hamer, H. P., & Dixon, R. (2012). A lesbian family in a straight world: The impact of the transition to parenthood on couple relationships in planned les- bian families. Women’s Studies Journal, 26(2), 39–53.

Ong, K. K., Ahmed, M. L., & Dinger, D. B. (2006). Lessons from large population stud- ies on timing and tempo of puberty (secular trends and relation to body size): The European trend. Molecular and Cellular Endocrinology, 254–255, 8–12. doi:10.1016/ j.mce.2006.04.018

Onunaku, N. (2005). Improving maternal and infant mental health: Focus on maternal depres- sion. National Center for Infant and Early Childhood Health Policy. Retrieved from http://www.zerotothree.org

Oselin, S. S. (2014). Leaving prostitution: Getting out and staying out of sex work. New York, NY: New York University Press.

Oswald, F., & Wahl, H. (2005). Dimensions of the meaning of home in later life. In G. Rowles & H. Chaudhury (Eds.), Home and identity in late life: International per- spectives (pp. 21–45). New York, NY: Springer Publishing.

Packman, W., Horsley, H., Davies, B., & Kramer, R. (2006). Sibling bereavement and continuing bonds. Death Studies, 30, 817–841. doi:10.1080/07481180600886603

Paley, B., Lester, P., & Mogil, C. (2013). Family systems and ecological perspectives on the impact of deployment on military families. Clinical Child and Family Psychology Review, 16(3), 245–265. doi:10.1007/s10567-013-0138-y

Palley, E. & Shdaimah, C. S. (2014). In our hands: The struggle for U.S. child care policy. New York: New York University Press.

Papa, A., & Maitoza, R. (2013). The role of loss in the experience of grief: The case of job loss. Journal of Loss & Trauma, 18(2), 152–169. doi:10.1080/15325024.2012.684580

Parfitt, Y., & Ayers, S. (2014). Transition to parenthood and mental health in first-time parents. Infant Mental Health Journal, 35(3), 263–273. doi:10.1002/imhj.21443

Park, C. L. (2010). Making sense of the meaning literature: An integrative review of meaning making and its effects on adjustment to stressful life events. Psychological Bulletin, 136(2), 257–301. doi:10.1037/a0018301

Parkes, C. M. (1988). Bereavement as a psychosocial transition: Processes of adapta- tion to change. Journal of Social Issues, 44(3), 53–65. doi:10.1111/j.1540-4560.1988 .tb02076.x

Parkes, C. M., Benjamin, B., & Fitzgerald, R. G. (1969). Broken heart: A statistical study of increased mortality among widowers. British Medical Journal, 1, 740–743. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1982801

Parkes, C. M., Laungani, P., & Young, B. (Eds.). (2000). Death and bereavement across cultures. New York, NY: Routledge.

Parkes, C. M., & Prigerson, H. G. (2010). Bereavement: Studies of grief in adult life. London, UK: Routledge.

Paul, M. S., & Berger, R. (2007). Topic avoidance and family functioning in families conceived with donor insemination. Human Reproduction, 22(9), 2566–2571. doi:10.1093/humrep/dem174

Pearce, C. (2011). Girl, interrupted: An exploration into the experience of grief follow- ing the death of a mother in young women’s narratives. Mortality: Promoting the

Grief and Loss Across the Lifespan330

Interdisciplinary Study of Death and Dying, 16(1), 35–53. doi:10.1080/13576275.2011 .536000

Pearlman, L. A., & Courtois, C. A. (2005). Clinical applications of the attachment framework: Relational treatment of complex trauma. Journal of Traumatic Stress, 18, 449–459. doi:10.1002/jts.20052

Pedro-Carroll, J. L. (2005). The role of evidence-based programs for children. Family Court Review, 43(1), 52–64. doi:10.1111/j.1744-1617.2005.00007.x

Penman, E. L., Breen, L. J., Hewitt, L. Y., & Prigerson, H. G. (2014). Public attitudes about normal and pathological grief. Death Studies, 38(8), 510–516. doi:10.1080/07 481187.2013.873839

Peters, V., Liu, K., Dominguez, K., Frederick, T., Melville, S., Hsu, H., & . . . Thomas, P. (2003). Missed opportunities for perinatal HIV prevention among HIV-exposed infants born 1996–2000, Pediatric Spectrum of HIV Disease cohort. Pediatrics, 111(5), 1186–1191.

Pfefferbaum, B., Houston, J. B., Sherman, M. D., & Melson, A. G. (2011). Children of national guard troops deployed in the global war on terrorism. Journal of Loss & Trauma, 16(4), 291–305. doi:10.1080/15325024.2010.519293

Pfefferbaum, B., Nixon, S. J., Tucker, P. M., Tivis, R. D., Moore, V. L., Brown, J. M., . . . Gurwitch, R. H. (1999). Posttraumatic stress responses in bereaved children after the Oklahoma City bombing. Journal of the American Academy of Child and Adolescent Psychiatry, 38, 1372–1379. doi:10.1097/00004583-199911000-00011

Piaget, J. (1954). The construction of reality in the child. New York, NY: Basic Books. Pines, D. (1993). A woman’s unconscious use of her body. London, UK: Yale University

Press. Pipher, M. (1994). Reviving Ophelia. New York, NY: Grosset/Putnam. Pollack, W. (1998). Real boys: Rescuing our sons from the myths of boyhood. New York, NY:

Henry Holt & Co. Pomeroy, E., & Garcia, R. (2009). The grief assessment and intervention workbook: A strengths

perspective. Belmont, MA: Brooks/Cole Cengage Learning. Pope, D. C. (2001). Doing school: How we are creating a generation of stressed out, material-

istic, and miseducated students. New Haven, CT: Yale University Press. Porter, M., Bhattacharya, S., & van Teijlingen, E. (2006). Unfulfilled expectations: How

circumstances impinge on women’s reproductive choices. Social Science & Medicine, 62(7), 1757–1767. doi:10.1016/j.socscimed.2005.08.047

Power, L., & McKinney, C. (2013). Emerging adult perceptions of parental religiosity and parenting practices: Relationships with emerging adult religiosity and psycho- logical adjustment. Psychology of Religion and Spirituality, 5(2), 99–109. doi:10.1037/ a0030046

Prakash, S. P., De Leon, A. A., Patterson, B., Schirda, B. L., & Janssen, A. L. (2014). Mindfulness and the aging brain: A proposed paradigm. Frontiers in Aging Neuroscience, 6, 1–17. doi:103389/fnagi.2014 00120

Prensky, M. (2001). From On the Horizon, MCB University Press, 9(5). Retrieved from h t t p : / / w w w. m a rc p re n s k y. c o m / w r i t i n g / P re n s k y % 2 0 – % 2 0 D i g i t a l % 2 0 Natives,%20Digital%20Immigrants%20-%20Part1.pdf

Price, J., Jordan, J., Prior, L., & Parkes, J. (2011). Living through the death of a child: A  qualitative study of bereaved parents’ experiences. International Journal of Nursing Studies, 48, 1384–1392. doi:10.1016/j.ijnurstu.2011.05.006

Pruthi, S., Gostout, B. S., & Lindor, N. M. (2010). Identification and manage- ment of  women with BRCA mutations or hereditary predisposition for breast and ovarian cancer. Mayo Clinic Proceedings, 85(12), 1111–1120. doi:10.4065/ mcp.2010.0414

Rando, T. A. (1984). Grief, dying, and death: Clinical interventions for caregivers. Champaign, IL: Research Press.

References 331

Rando, T. A. (1986). The unique issues and impact of the death of a child. In T. Rando (Ed.), Parental loss of a child (pp. 5–43). Champaign, IL: Research Press.

Rando, T. A. (1993). Treatment of complicated mourning. Champaign, IL: Research Press. Rando, T. A. (1996). Complications in mourning traumatic death. In K. J. Doka (Ed.),

Living with grief after sudden loss: Suicide, homicide, accident, heart attack, stroke (pp. 139–160). Washington, DC: Hospice Foundation of American/Taylor & Francis.

Raphael-Leff, J. (2005). Psychological processes of childbearing. London, UK: The Anna Freud Centre.

Rapp, R. (1999). Testing women, testing the fetus: The social impact of amniocentesis in America. New York, NY: Routledge.

Rappleyea, D., Taylor, A., & Fang, X. (2014). Gender differences and communication technology use among emerging adults in the initiation of dating relationships. Marriage and Family Review, 50(3), 269–284. doi:10.1080/01494929.2013.879552

Rask, K., Kaunonen, M., & Paunon-Ilomonen, M. (2002). Adolescent coping with grief after the death of a loved one. International Journal of Nursing Practice, 8, 137–142. doi:10.1046/j.1440-172X.2002.00354.x

Reed-Knight, B., Blount, R. L., & Gilleland, J. (2014). The transition of health care responsibility from parents to youth diagnosed with chronic illness: A develop- mental systems perspective. Families, Systems & Health: The Journal of Collaborative Family Healthcare, 32(2), 219–234. doi:10.1037/fsh0000039

Reeves, N. C. (2011). Death acceptance through ritual. Death Studies, 35(5), 408–419. doi: 10.1080/07481187.2011.552056

Reilly, J. J. (2007). Childhood obesity: An overview. Children & Society, 21, 390–396. doi:10.1111/j.1099-0860.2007.00092.x

Reith, M., & Payne, M. (2009). Social work in end-of-life and palliative care. Chicago IL: Lyceum Books.

Reupert, A. (2007). Social worker’s use of self. Clinical Social Work Journal, 35(2), 107–116. doi:10.1007/s10615-006-0062-4

Richardson, V. E. (2010). Length of caregiving and well-being among older widowers: Implications for the dual process model of bereavement. Omega, 61(4), 333–356. doi:10.2190/OM.61.4.e

Riesz, E. D. (2004). Loss and transitions: A 30 year perspective on life with a child who has Down syndrome. Journal of Loss & Trauma, 9, 371–382. doi:10.1080/15325020590490834

Robak, R., & Weitzman, S. (1994). Grieving the loss of romantic relationships among young adults: An empirical study of disenfranchised grief. Omega, 30(4), 269–281.

Robinson, L., & Mahon, M. (1997). Sibling bereavement: A concept analysis. Death Studies, 21, 477–499. doi:10.1080/074811897201831

Robinson, T., & Marwit, S. (2006). An investigation of the relationship of personality, coping, and grief intensity among bereaved mothers. Death Studies, 30, 677–696. doi:10.1080/07481180600776093

Robson, P., & Walter, T. (2012). Hierarchies of loss: A critique of disenfranchised grief. Omega: Journal of Death and Dying, 66(2), 97–119. doi:10.2190/OM.66.2.a

Rogers, C. H., Floyd, F. J., Seltzer, M. M., Greenberg, J., & Hong, J. (2008). Long-term effects of the death of a child on parents’ adjustment in midlife. Journal of Family Psychology, 22(2), 203–211. doi:10.1037/0893-3200.22.2.203

Rogers, H. B. (2013). Koru: Teaching mindfulness to emerging adults. New Directions For Teaching & Learning, 134, 73–81. doi:10.1002/tl.20056

Room, R. (2005). Stigma, social inequality and alcohol and drug use. Drug and Alcohol Review, 24(2), 143–155. doi:10.1080/09595230500102434

Rosen, E., & Venkatesh, S. A. (2008). A “perversion” of choice: Sex work offers just enough in Chicago’s urban ghetto. Journal of Contemporary Ethnography, 37(4), 417–441. doi:10.1177/0891241607309879

Grief and Loss Across the Lifespan332

Rosengren, K. S., Miller, P. J., Gutierrez, I. T., Chow, P. I., Schein, S. S., & Anderson, K. N. (2014). Children’s understanding of death: Toward a contexutualized and integrated account. Monographs in the Society for Research in Child Development, 79(1), 1–18.

Ross, A. M., & DeVoe, E. R. (2014). Engaging military parents in a home-based reinte- gration program: A consideration of strategies. Health & Social Work, 39(1), 47–54. doi:10.1093/hsw/hlu001

Rostila, M., Saarela, J., & Kawachi, I. (2012). The forgotten griever: A nationwide follow-up study of mortality subsequent to the death of a sibling. American Journal of Epidemiology, 176(4), 338–346. doi:10.1093/aje/kws163

Rothschild, B. (2000). The body remembers: The psychophysiology of trauma and trauma treatment. New York, NY: W. W. Norton.

Rothstein, M. A. (2013). Epigenetic exceptionalism. Journal of Law, Medicine & Ethics, 41(3), 733–736.

Rowling, L. (2002). Youth and disenfranchised grief. In K. J. Doka (Ed.), Disenfranchised grief: New directions, challenges and strategies for practice (pp. 275–292). Champaign, IL: Research Press.

Roy-Byrne, P. & Shear, M. K. (2007). Is the stage theory of grief empirically valid? Journal Watch. Retrieved from http://psychiatry.jwatch.org/cgi/content/full/ 2007/326/1?q=etoc.

Rubin, A., Weiss, E. L., & Coll, J. E. (Eds.). (2012). Handbook of military social work. Hoboken, NJ: John Wiley & Sons.

Rubinstein, R., & Medeiros, K. (2005). Home, self and identity. In G. Rowles & H.  Chaudhury (Eds.), Home and identity in late life: International perspectives (pp. 47–61). New York, NY: Springer Publishing.

Rudick, C. D. (2012). Therapist self-care: Being a healing counselor rather than a wounded healer. In L. Lopez Levers (Ed.), Trauma counseling: Theories and interven- tions (pp. 554–568). New York, NY: Springer Publishing.

Rueter, M. A., Holm, K. E., McGeorge, C. R., & Conger, R. D. (2008). Adolescent sui- cidal ideation subgroups and their association with suicidal plans and attempts in young adulthood. Suicide and Life-Threatening Behavior, 38, 564–575. doi:10.1521/ suli.2008.38.5.564

Saakvitne, K. W., Gamble, S., Pearlman, L. A., & Lev, B. T. (2000). Risking connection: A training curriculum for working with survivors of childhood abuse. Baltimore, MD: The Sidran Press.

Sachs, O. (2015). My own life. Retrieved from http://mobile.nytimes.com/2015/02/19/ opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html?_r=3&referrer=

Sakraida, T. (2005). Divorce transition differences of midlife women. Issues in Mental Health Nursing, 26(2), 225–249. doi:10.1080/01612840590901699

Saldinger, A., Cain, A. C., Porterfield, K., & Lohnes, K. (2004a). Facilitating attach- ment between school-aged children and a dying parent. Death Studies, 28, 915–940. doi:10.1080/07481180490511993

Saldinger, A., Porterfield, K., & Cain, A. C. (2004b). Meeting the needs of parentally bereaved children: A framework for child-centered parenting. Psychiatry, 67, 331–352. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15801376

Salloum, A. (2004). Group work with adolescents after violent death: A manual for practitioners. New York, NY: Taylor & Francis.

Salovey, P., Rothman, A. J., Detweiler, J. B., & Steward, W. T. (2000). Emotional states and  physical health. American Psychologist, 55(1), 110–121. doi:10A037//0003-O66X.55.1.110

Saltzman, L., Fanslow, J., McMahon, P., & Shelley, G. (2002). Intimate partner violence surveillance: Uniform definitions and recommended data elements, Version 1.0. Atlanta (GA): National Center for Injury Prevention and Control, Centers for Disease Control and Prevention.

References 333

Samuel, J. C., & Ollila, D. W. (2005–2006). Prophylaxis and screening options: Recommendations for young women with BRCA mutations. Breast Disease, 23, 31–35. Retrieved from http://iospress.metapress.com/content/5551346n3mhguw17

Santalahti, P., Hemminki, E., Latikka, A., & Ryynaen, M. (1998). Women’s decision- making in prenatal screening. Social Science & Medicine, 46(8), 1067–1076. doi:10.1016/S0277-9536(97)10038-7

Sargent, L., Lee, M., Martin, B., & Zikic, J. (2013). Reinventing retirement: New pathways, new arrangements, new meanings. Human Relations, 66(1), 3–21. doi:10.1177/0018726712465658

Sasson, I., & Umberson, D. J. (2009). Widowhood and depression: New light on gender differences, selection, and psychological adjustment. Journals of Gerontology, Series B: Psychological and Social Sciences, 69(1), 135–145. doi:10.1093/geronb/gbt058

Scabini, E., & Cigoli, V. (2004). How do young adult children deal with parental divorce: A generational prospect. Journal of Family Psychotherapy, 15 (1/2), 219–233. doi:10.1300/J08v15n01_16

Scherrer, K. (2010). The intergenerational family relationships of grandparents and GLBQ grandchildren. Journal of GLBT Family Studies, 6(3), 229–264. doi:10.1080/ 1550428X.2010.490898

Schlossberg, N. (2004). Retire smart, retire happy. Washington, DC: American Psychological Association.

Schlossberg, N. (2009). Revitalizing retirement: Reshaping your identity, relationships, and purpose. Washington, DC: American Psychological Association.

Schore, A. N. (2001). Effects of a secure attachment relationship on right brain develop- ment, affect regulation and infant mental health. Infant Mental Health Journal, 22, 7–66.

Schott, J., & Henley, A. (1996). Culture, religion and childbearing in a multiracial society. Oxford, G. B.: Butterworth/Heinemann.

Schroepfer, T. A. (2007). Critical events in the dying process: The potential for physical and psychosocial suffering. Journal of Palliative Medicine, 10(1), 136–147.

Schryer, E., & Ross, M. (2014). Does the age-related positivity effect in autobiographi- cal recall reflect differences in appraisal or memory? Journal of Gerontology, Series B: Psychological Studies and Social Sciences, 69(4), 548–556. doi:10.1093/geronb/gbt047

Schultz, L. A. (2007). The influence of maternal loss on young women’s experience of identity development in emerging adulthood. Death Studies, 31(1), 17–43. doi:10.1080/07481180600925401

Schultz, R., Mendelsohn, W., Mahoney, R., Zhang, S., Thompson, L., & Belle, S. (2003). End of life care and the effects of bereavement on family caregivers of persons with dementia. New England Journal of Medicine, 349, 1936–1952. doi:10.1056/ NEJMsa035373

Schultze-Florey, C., Martínez-Maza, O., Magpantay, L., Breen, E., Irwin, M., Gündel, H., . . . O’Connor, M. (2012). When grief makes you sick: Bereavement induced systemic inflammation is a question of genotype. Brain, Behavior, and Immunity, 26(7), 1066– 1071. doi:10.1016/j.bbi.2012.06.009

Schwab, R. (1998). A child’s death and divorce: Dispelling the myth. Death Studies, 22, 445–468. doi:10.1080/074811898201452

Schwartz, L., & Drotar, D. (2006). Posttraumatic stress and related impairment in survivors of childhood cancer in early adulthood compared to healthy peers. Journal of Pediatric Psychology, 31, 356–366. doi:10.1093/jpepsy/jsj018

Scott, C., & Briere, J. (2006). Biology and psychopharmacology of trauma. In J. Briere & C. Scott (Eds.), Principles of trauma therapy (pp. 192–229). Thousand Oaks, CA: Sage Publications.

Segal, D. L., Minic, M. S., Coolidge, F. L., & O’ Riley, A. (2004). Attitudes toward suicide and suicidal risk among younger and older persons. Death Studies, 28(7), 671–678. doi:10.1080/07481180490476524

Grief and Loss Across the Lifespan334

Seligman, M. E. P. (with Reivich, K., Jaycox, L., & Gilham, J.). (1995). The optimistic child: A revolutionary program that safeguards children against depression & builds lifelong resilience. Boston, MA: Houghton Mifflin.

Seligman, M. E. P. (2012). Flourish: A visionary new understanding of happiness and well- being. New York, NY: Free Press.

Seno, V. (2010). Being-with dying: Authenticity in end-of-life encounters. American Journal of Hospice & Palliative Medicine, 27(6), 377–386. doi:10.1177/1049909109359628

Servaty-Seib, H. L. (2009). Death of a friend during adolescence. In D. E. Balk & C. A. Corr (Eds.), Adolescent encounters with death, bereavement and coping (pp. 217–236). New York, NY: Springer Publishing.

Seravaty-Seib, H. L., & Taub, D. J. (2010). Bereavement and college students: The role of counseling psychology. Counseling Psychologist, 38(7), 947–975. doi:10.1177/0011000010366485

Shad, M., Suris, A., & North, C. (2011). Novel combination strategy to optimize treat- ment for PTSD. Human Psychopharmacology, 26, 4–11. doi:10.1002/hup.1198

Shaffer, S. (1993). Young widows: Rebuilding identity and personal growth following spousal loss. (Doctoral Dissertation, University of San Francisco, 1993). Abstract in Dissertation Abstracts International, 54/01:94.

Shamai, M. (2000). Rebirth of the self: How battered women experience treatment. Clinical Social Work Journal, 28, 85–103. doi:10.1023/A:1005115909851

Shapiro, A., & Gottman, J. (2005). Effects on marriage of a psycho-communicative- educational intervention with couples undergoing the transition to parenthood, evaluation at 1 year post intervention. Journal of Family Communication, 5(1), 1–24. doi:10.1207/s15327698jfc0501_1

Shapiro, A., Gottman, J., & Carrere, S. (2000). The baby and the marriage: Identifying factors that buffer against decline in marital satisfaction after the first baby arrives. Journal of Family Psychology, 14, 59–70. doi:10.1037/0893-3200.14.1.59

Shapiro, V. B., Shapiro, J. R., & Paret, I. H. (2001). Complex adoption & assisted reproductive technology: A developmental approach to clinical practice. New York, NY: Guilford Press.

Shaver, P. R., & Tancready, C. M. (2001). Emotion, attachment, and bereavement: A conceptual commentary. In M. S. Stroebe, R. O. Hansson, W. Stroebe, & H. Schut (Eds.), Handbook of bereavement research (pp. 63–88). Washington, DC: American Psychological Association.

Shdaimah, C., & Leon, C. (2014). “First and foremost they’re survivors”: Selective manipulation, resilience and assertion among prostitute women. Feminist Criminology (pre-publication on-line). doi:10.1177/1557085114553832

Shdaimah, C., & Leon, C. (in press). Counter-narratives as stigma management: Relationships of care and caution among women engaged in street level prostitu- tion. Studies in Law, Politics, and Society.

Shdaimah, C. S. (2009). Negotiating justice: Public interest lawyering, low-income clients, and the pursuit of social justice. New York, NY: New York University Press.

Shdaimah, C. S., & Wiechelt, S. A. (2012). Converging on empathy: Perspectives on Baltimore city’s specialized prostitution diversion program. Women and Criminal Justice, 22(2), 156–173. doi:10.1080/08974454.2012.662131

Shear, M. K. (2010). Exploring the role of experiential avoidance from the perspec- tive of attachment theory and the dual process model. Omega: Journal of Death and Dying, 61(4), 357–369. doi:10.2190/OM.61.4.f

Shear, M. K. (2015). Complicated grief. New England Journal of Medicine, 372(2), 153–160. doi:10.1056/NEJMcp1315618

Shear, M. K., Boelen, P., & Neimeyer, R. A. (2011). Treating complicated grief: Converging approaches. Grief in the midst of ambiguity and uncertainty: An exploration of ambiguous loss and chronic sorrow. In R. A. Neimeyer, D. L. Harris,

References 335

H. R. Winokuer, & G. F. Thornton (Eds.), Grief and bereavement in contemporary soci- ety: Bridging research and practice (pp. 139–162). New York, NY: Routledge.

Shernoff, M. (1998). Gay widowers: Life after the death of a partner. New York, NY: Haworth Press.

Sherwood, R., Shimel, H., Stolz, P., & Sherwood, D. (2003). The aging veteran: Re- emergence of trauma issues. Journal of Gerontological Social Work, 40(4), 73–86.

Shorter, M., & Stayt, L. (2010). Critical care nurses’ experiences of grief in an adult intensive care unit. Journal of Advanced Nursing, 66(1), 159–167. doi:10.1111/j.1365-2648.2009.05191.x

Siegel, D. J. (2010a). Mindsight: The new science of personal transformation. New York, NY: Bantam Books.

Siegel, D. J. (2010b). The mindful therapist: A clinician’s guide to mindsight and neural inte- gration. New York, NY: W. W. Norton.

Siegel, D. J. (2012). The developing mind: How relationships and the brain interact to shape who we are (2nd ed.). New York, NY: The Guilford Press. (Original work published 1999)

Siegel, D. J. (2013). Brainstorm: The power and purpose of the teenage brain. New York, NY: Jeremy P. Tarcher/Penguin.

Siegel, D. J., & Bryson, T. P. (2011). The whole-brained child: 12 revolutionary strategies to nurture your child’s developing mind. New York, NY: Delacorte Press.

Silverman, P. R., & Nickman, S. L. (1996). Children’s construction of their dead parents. In D. Klass, P. R. Silverman, & S. L. Nickman (Eds.), Continuing bonds (pp. 73–86). Philadelphia, PA: Taylor & Francis.

Silverman, P. R., & Worden, J. W. (2006). Children’s reactions to the death of a parent. In M. S. Stroebe, W. Stroebe, & R. O. Hansson (Eds.), Handbook of bereavement: Theory, research, and intervention (pp. 300–316). New York, NY: Cambridge University Press. (Original work published 1993)

Sim, J., Machin, L., & Bartlam, B. (2014). Identifying vulnerability in grief: Psycho- metric properties of the adult attitude to grief scale. Quality of Life Research, 23(4), 1211–1220. doi:10.1007/s11136-013-0551-1

Simos, B. G. (1979). A time to grieve: Loss as a universal human experience. New York, NY: Family Service Association of America.

Sinclair, T. (2009). Nina’s travels through the foster care system. In C. A. Walter & J. L. M. McCoyd (Eds.), Grief and loss across the lifespan: A biopsychosocial perspective (pp. 94–100). New York, NY: Springer Publishing.

Sisask, M., Kolves, K., & Varnik, A. (2009). Severity of attempted suicide as measured by the pierce intent scale. Crisis, 30, 136–143. doi:10.1027/0227-5910.30.3.136

Sklar, F., & Hartley, S. F. (1990). Close friends as survivors: Bereavement patterns in a “hidden” population. Omega: Journal of Death and Dying, 21(2), 103–112.

Slade, A. (2002). Keeping the baby in mind: A critical factor in perinatal mental health. In a Special Issue on Perinatal Mental Health. Zero to Three, June/July, 521–529.

Slaughter, V. (2014). Primitive reflexes. Magill’s medical guide, Gale Virtual Reference Library (2014-01-01 electronic library resource), 1926–1928.

Smith, M. (2013). Care of adolescents who have mental health and substance misuse problems. Mental Health Practice, 16(5), 32–36.

Sobel, S., & Cowan, C. B. (2003). Ambiguous loss and disenfranchised grief: The impact of DNA predictive testing on the family as a system. Family Process, 42(1), 47–57. doi:10.1111/j.1545-5300.2003.00047.x

Sormanti, M., & Ballan, M. S. (2011). Strengthening grief support for children with developmental disabilities. School Psychology International, 32(2), 179–193. doi:10.1177/0143034311400831

Grief and Loss Across the Lifespan336

Sowell, E. R., Thompson, P. M., Leonard, C. M., Welcome, S. E., Kan, E., & Toga, A. W. (2004). Longitudinal mapping of cortical thickness and brain growth in normal chil- dren. Journal of Neuroscience, 24, 8223–8231. doi:10.1523/JNEUROSCI.1798-04.2004

Speece, M. W., & Brent, S. B. (1996). The development of children’s understanding of death. In C. A. Corr & D. M. Corr (Eds.), Handbook of childhood death and bereavement (pp. 29–50). New York, NY: Springer Publishing.

Stark, H., Dudzinski, D., & White, N. (2013). Physician aid-in-dying. Retrieved from http://depts.washington .edu/bioethx/topics/pad.html

Stein, C. H., Abraham, K.M., Bonar, E. E., Leith, J. E., Kraus, S. W., Hamill, A. C., Gumbar, S., Hoffman, E. & Fogo, W. R. (2011). Family ties in tough times: How young adults and their parents view the U. S. economic crisis. Journal of Family Psychology, 25(3), 449–454. doi: 10.1037/a0023697

Stone, A. L., Becker, L. G., Huber, A. M., & Catalano, R. F. (2012). Review of risk and protective factors of substance use and problem use in emerging adulthood. Addictive Behaviors, 37(7), 747–775. doi:10.1016/j.addbeh.2012.02.014

Stone, M., & Stone, H. (2004). Too young to retire: 101 ways to start the rest of your life. New York, NY: Penguin Group.

Strauch, B. (2010). The secret life of the middle aged brain. New York, NY: Penguin Group. Streufert, B. J. (2004). Death on campuses: Common postvention strategies in higher

education. Death Studies, 28, 151–172. doi:10:1080/074811804902647 Stroebe, M., & Schut, H. (1999). The dual process model of coping with bereavement:

Rationale and description. Death Studies, 23, 197–224. doi:10.1080/074811899201046 Stroebe, M., & Schut, H. (2005). Meaning making in the dual process model of coping

with bereavement. In R. Neimeyer (Ed.), Meaning reconstruction & the experience of loss (pp. 55–73). Washington, DC: American Psychological Association.

Stroebe, M., & Schut, H. (2010). The dual process model of coping with bereavement: A decade on. Omega: Journal of Death and Dying, 61(4), 273–289. doi:10.2190/ OM.61.4.b

Stroebe, M., Schut, H., & Stroebe, W. (2007). Health outcomes of bereavement. Lancet, 370, 1960–1973. doi:10.1016/S0140-6736(07)61816-9

Stroebe, M., & Stroebe, W. (1991). Does “grief work” work? Journal of Consulting and Clinical Psychology, 59(3), 479–482. doi:10.1037/0022-006X.59.3.479

Stroebe, M. S., Boelen, P., van der Hout, M., Stroebe, W., Salemink, E., & van den Bout, J. (2007). Ruminative coping as avoidance: A reinterpretation of its function in adjust- ment to bereavement. European Archives of Psychiatry and Clinical Neuroscience, 257, 462–472. doi:10.1007/s00406-007-0746-y

Stroebe, M. S., & Stroebe, W. (1993). The mortality of bereavement: A review. In M. S. Stroebe, W. Stroebe, & R. O. Hansson (Eds.), Handbook of bereavement: Theory, research, and intervention (pp. 175–195). New York, NY: Cambridge University Press.

Stroebe, M. S., Stroebe, W., Gergen, K. J., & Gergen, M. (1981). The broken heart: Reality or myth? Omega, 12, 87–105.

Stroebe, W., Abakoumkin, G., & Stroebe, M. (2010). Beyond depression: yearning for the loss of a loved one. Omega: Journal of Death & Dying, 61(2), 85–101. doi:10.2190/ OM.61.2.a

Sturman, D., & Moghaddam, B. (2011). The neurobiology of adolescence: Changes in brain architecture, functional dynamics, and behavioral tendencies. Neuroscience & Biobehavioral Reviews, 35(8), 1704–1712. doi:10.1016/j.neubiorev.2011.04.003

Styles, J. L., Meier, A., Sutherland, L. A., & Campbell, M. K. (2007). Parents’ and care- givers’ concerns about obesity in young children. Family & Community Health, 30, 279–295. doi:10.1097/01.FCH.0000290541.02834.e0

Substance Abuse and Mental Health Services Administration (SAMHSA). (2010). Retrieved from http://archive.samhsa.gov/data/NSDUH/2k10ResultsRev/ NSDUHresultsRev2010.htm#2.3

References 337

Sunderam, S., Kissin, D. M., Crawford, S., Anderson, J. E., Folger, S. G., Jamieson, D. J., . . . Barfield, W. D. (2013). Assisted reproductive technology surveillance—United States, 2010. MMWR Surveillance Summaries, 62(9), 1–24. www.cdc.gov/mmwr/ indss_2013.html

Taylor, M. F., Clark, N., & Newton, E. (2008). Counselling Australian baby boom- ers: Examining the loss and grief issues facing aging distance-separated sibling dyads. British Journal of Guidance & Counselling, 36(2), 189–204. doi:10.1080/03069880801926442

Teicher, M. H., Dumont, N. L., Ito, Y., Vaituzis, C. Giedd, J. J., & Andersen, S. L. (2004). Childhood neglect is associated with reduced corpus collosum area. Biological Psychiatry, 56, 80–85. doi:10.1016/j.biopsych.2004.03.016

The Transition Network. (2015). Retrieved from https://www.thetransitionnetwork.org Thoma, M. E., McLain, A. C., Louis, J., King, R. B., Trumble, A. C., Sundaram, R., &

Buck Louis, G. M. (2013). Prevalence of infertility in the United States as estimated by the current duration approach and a traditional constructed approach. Fertility and Sterility, 99, 1324–1331. doi:10.1016/j.fertnstert.2012.11.037

Thomas, A., Chess, S., & Birch, H. G. (1970). The origin of personality. Scientific American, 223, 102–109. Retrieved from http://www.acamedia.info/sciences/sciliterature/ origin_of_personality.htm

Thorpe, A., Spittlehouse, J., Joyce, P., Pearson, J., & Schluter, P. (2014). Attitudes to aging in midlife are related to health conditions and mood. International Psychogeriatrics, 26(12), 2061–2071. doi:10.1017/S1041610214001550

Town Hall. (2015, March 15). Former Ravens player testifies against death with dignity bill. Retrieved from http://townhall.com/tipsheet/cortneyobrien/2015/03/14/ former-ravens-player-testifies-against-death-with-dignity-bill-n1969612

Trafford, A. (2004). My time: Making the most of the bonus decades after fifty. New York, NY: Basic Books.

Trepanier, A., Ahrens, M., McKinnon, W., Peters, J., Stopfer, J., Grumet, S. C., . .  . National Society of Genetic Counselors. (2004). Genetic cancer risk assessment and counseling: Recommendations of the national society of genetic counselors. Journal of Genetic Counseling, 13(2), 83–114. doi:1059-7700/04/0400-0083/1

Tronick, E., & Reck, C. (2009). Infants of depressed mothers. Harvard Review of Psychiatry, 17(2), 147–156. doi:10.1080/10673220902899714

Troyer, J. M. (2014). Older widowers and post-death encounters: A qualitative investi- gation. Death Studies, 38, 637–647. doi:10.1080/07481187.2014.924829

Umberson, D. (2003). Death of a parent: Transition to a new adult identity. New York, NY: Cambridge University Press.

Underwood, N. (2006). The teenage brain [Cover story]. Walrus, 3(9), 48–56. Uren, T. H., & Wastell, C. A. (2002). Attachment and meaning-making in perinatal

bereavement. Death Studies, 26, 279–306. doi:10.1080/074811802753594682 U. S. Census Bureau. (2012). The 2012 statistical abstract. Births, deaths, marriages, &

divorces: Life expectancy. Retrieved from https://www.census.gov/compendia/ statab

Vachon, M. L. S. (2011). Four decades of selected research in hospice/palliative care: Have the stressors changed? In I. Renzenbrink (Ed.), Caregiver stress and staff sup- port in illness, dying, and bereavement (pp. 1–19). New York, NY: Oxford Press.

Vachon, M. L. S. (2015). Care of the caregiver: Professionals and family members. In J. M. Stillion & T. Attig (Eds.), Death, dying, and bereavement: Contemporary perspec- tives, institutions, and practices (pp. 379–393). New York, NY: Springer Publishing.

Valentine, C. (2010). The role of the ancestral tradition in bereavement in contemporary Japanese society. Mortality, 15(4), 275–293. doi:10.1080/13576275.2010.513161

Vale-Taylor, P. P. (2009). “We will remember them”: A mixed-method study to explore which post-funeral remembrance activities are most significant and important to

Grief and Loss Across the Lifespan338

bereaved people living with loss, and why those particular activities are chosen. Palliative Medicine, 23(6), 537–544. doi:10.1177/0269216309103803

van den Berg, G. J., Lindeboom, M., & Portrait, F. (2011). Conjugal bereavement effects on health and mortality at advanced ages. Journal of Health Economics, 30, 774–794. doi:10.1016/j.jhealeco.2011.05.011

van der Aa, N. E., Benders, M. J. N. L., Groenendaal, F., & de Vries, L. S. (2014). Neonatal stroke: A review of the current evidence of epidemiology, pathogenesis, diagnostics and therapeutic options. Acta Paediatrica, 103, 356–354. doi:10.1111/ apa.12555

Van Humbeeck, L., Piers, R. D., Van Camp, S., Dillen, L., Verhaeghe, S. T., & Van Den Noortgate, N. J. (2013). Aged parents’ experiences during a critical illness trajec- tory and after the death of an adult child: A review of the literature. Palliative Medicine, 27(7), 583–595. doi:10.1177/0269216313483662

van Jaarsveld, C. H., Fidler, J. A., Simon, A. E., & Wardle, J. (2007). Persistent impact of pubertal timing on trends in smoking, food choice, activity and stress in ado- lescence. Psychosomatic Medicine, 69, 798–806. doi:10.1097/PSY.0b013e3181576106

Viorst, J. (1986). Necessary losses: The loves, illusions, dependencies and impossible expecta- tions that all of us have to give up in order to grow. New York, NY: Fawcett Gold Medal.

Volkan, V. (1985). Psychotherapy of complicated mourning. In V. Volkan (Ed.), Depressive states and their treatment. Northfield, NJ: Jason Aronson.

Wakefield, J. C. (2013). The DSM-5 debate over the bereavement exclusion: Psychiatric diagnosis and the future of empirically supported treatment. Clinical Psychology Review, 33, 825–845. doi:10.1016/j.cpr.2013.03.007

Wakefield, J. C., Schmitz, M. F., & Baer, J. C. (2011). Relation between duration and severity in bereavement-related depression. Acta Pscyhiatrica Scandinavica, 124(6), 487–494. doi:10.1111/j.1600-0447.2011.01768.x

Wallis, C. (2006, March 27). The multi-tasking generation: They’re e-mailing, IM ing and downloading while writing the history essay. What is all that doing to kids’ brains and their family life? Time. Retrieved from http://content.time.com/time/ magazine/article/0,9171,1174696,00.html

Wallis, D. (2014, August 29). Increasingly, retirees dump their possessions and hit the road. New York Times. Retrieved from http://www.nytimes.com/2014/08/30/ business/increasingly-retirees-dump-their-possessions-and-hit-the-road.html

Walsh, F., & McGoldrick, M. (2004). Living beyond loss (2nd ed.). New York, NY: W. W. Norton.

Walter, C. (2003). The loss of a life partner: Narratives of the bereaved. New York, NY: Columbia University Press.

Walter, T. (2000). Grief narratives: The role of medicine in the policing of grief. Anthropology & Medicine, 7(1), 97–114. doi:10.1080/136484700109377

Watkins, K., & Baldo, T. (2004). The infertility experience: Biopsychosocial effects and suggestions for counselors. Journal of Counseling and Development, 82, 394–402.

Weiland, B. J., Korycinski, S. T., Soules, M. M., Zubieta, J. K., Zucker, R. A., & Heitzeg, M. M. (2014). Substance abuse risk in emerging adults associated with smaller frontal gray matter volumes and higher externalizing behaviors. Drug and Alcohol Dependence, 137, 68–75. doi:10.1016/j.drugalcdep.2014.01.005

Weitzer, R. (2009). Sociology of sex work. Annual Review of Sociology, 35(1), 213–234. doi:10.1146/annurev-soc-070308-120025

Werner-Lin, A. (2008). Formal and informal support needs of young women with BRCA mutations. Journal of Psychosocial Oncology, 26(4), 111–132. doi:10.1080/07347330802359776

Werner-Lin, A., & Gardner, D. S. (2009). Family illness narratives of inherited cancer risk: Continuity and transformation. Families, Systems and Health, 27(3), 201–212. doi:10.1037/a0016983

References 339

Werner-Lin, A., Hoskins, L. M., Doyle, M. H., & Greene, M. H. (2012). “Cancer doesn’t have an age”: Genetic testing and cancer risk management in BRCA1/2 mutation- positive women aged 18-24. Health: An Interdisciplinary Journal for the Social Study of Health, Illness, and Medicine, 16(6), 636–654. doi:10.1177/1363459312442420

Whipple, W. (2014). Lesbian Widows Invisible Grief. New York, NY: Routledge. White, M., & Epston, D. (1990). Narrative means to therapeutic ends. New York, NY:

W. W. Norton. White, O., McCorry, N. K., Scott-Heyes, G., Dempster, M., & Manderson, J. (2008).

Maternal appraisals of risk, coping and prenatal attachment among women hospi- talised with pregnancy complications. Journal of Reproductive and Infant Psychology, 26(2), 74–85. doi:10.1080/02646830801918455

Williams, J. M. G., Barnhofer, T., Crane, C., Herman, D., Raes, F., Watkins, E., . . . Dalgleish, T. (2007). Autobiographical memory specificity and emotional disorder. Psychological Bulletin, 133, 122–148. doi:10.1037/0033-2909.133.1.122

Willis, C. A. (2002). The grieving process in children: Strategies for understanding, edu- cating, and reconciling children’s perceptions of death. Early Childhood Education Journal, 29(4), 221–226. doi:10.1023/A:1015125422643

Wilson, C., Rickwood, D., Bushnell, J., Caputi, P., & Thomas, S. (2011). The effects of need for autonomy and preference for seeking help from informal sources on emerging adults’ intentions to access mental health services for common mental disorders and suicidal thoughts. Advances in Mental Health, 10(1), 29–38.

Winnicott, D. W. (1953). Transitional objects and transitional phenomena; a study of the first not-me possession. International Journal of Psycho-Analysis, 34, 89–97.

Winnicott, D. W. (1965). The maturational processes and the facilitating environment: Studies in the theory of emotional development. Oxford, England: International Universities Press. (Original work published 1953)

Witt, W., Wisk, L., Cheng, E., Hampton, J., & Hagen, E. (2012). Preconception mental health predicts pregnancy complications and adverse birth outcomes: A national population-based study. Maternal & Child Health Journal, 16(7), 1525–1541. doi:10.1007/s10995-011-0916-4

Wojnar, D. M. (2007). Miscarriage experiences of lesbian couples. Journal of Midwifery and Women’s Health, 52, 479–485. doi:10.1016/j.jmwh.2007.03.015

Wojnar, D. M., Swanson, K. M., & Adolfsson, A. (2011). Confronting the inevitable: A conceptual model of miscarriage for use in clinical practice and research. Death Studies, 35(6), 536–558. doi:10.1080/07481187.2010.536886

Woodgate, R. I. (2006). Living in a world without closure: Reality for parents who have experienced the death of a child. Journal of Palliative Care, 22(2), 75–82. Retrieved from http://europepmc.org/abstract/med/17265659

Worden, J. W. (2009). Grief counseling and grief therapy (4th ed.). New York, NY: Springer Publishing.

Worden, J. W., & Winokuer, H. R. (2011). A task-based approach for counseling the bereaved. In R. A. Neimeyer, D. L. Harris, H. R. Winokuer, & G. F. Thornton (Eds.), Grief and bereavement in contemporary society: Bridging research and practice (pp. 57–68). New York, NY: Routledge.

World Health Organization. (2012). Maternal, newborn, child and adolescent health. Retrieved from http://www.who.int/maternal_child_adolescent/epidemiology/ adolescence/en

World Health Organization. (2015). WHO Definition of Palliative Care. Retrieved from http://www.who.int/cancer/palliative/en

Wortman, C. B., & Silver, R. C. (1989). The myths of coping with loss. Journal of Consulting and Clinical Psychology, 57, 349–357.

Wortman, C. B., & Silver, R. C. (2001). The myths of coping with loss revisited. In M. S. Stroebe, R. O. Hansson, W. Stroebe, & H. Schut (Eds.), Handbook of bereavement

Grief and Loss Across the Lifespan340

research: Consequences, coping, and care (pp. 405–430). Washington, DC: American Psychological Association.

Xue, Y. G., Leventhal, T., Brooks-Gunn, J., & Earls, F. J. (2005). Neighborhood residence and mental health problems of 5 to 11- year olds. Archives of General Psychiatry, 62(5), 554–563. doi:10.1001/archpsyc.62.5.554

Yancey, A. K., & Kumanyika, S. K. (2007). Bridging the gap: Understanding the struc- ture of social inequities in childhood. American Journal of Preventive Medicine, 33, S172–S174. doi:10.1016/j.amepre.2007.07.013

Yang, S. (2012). An autophotography of the young adult children of bereaved families in Korea. Journal of Loss & Trauma, 17(1), 1–11. doi:10.1080/15325024.2011.575710

Young, D. G., & Caplan, S. E. (2010). Online dating and conjugal bereavement. Death Studies, 34(7), 575–605. doi:10.1080/07481181003761542

Youngblut, J. M., & Brooten, D. (2013). Parents’ report of a child’s response to siblings’ death in a neonatal or pediatric intensive care unit. American Journal of Critical Care, 22(6), 474–481. doi:10.4037/ajcc2013790

Zafar, S., & Ross, E. C. (2013). Perceptions of childhood sexual abuse survivors: Development and initial validation of a new scale to measure stereotypes of adult survivors of childhood sexual abuse. Journal of Child Sexual Abuse, 22(3), 358–378. doi:10.1080/10538712.2013.743955

Zech, E., & Arnold, C. (2011). Attachment and coping with bereavement: Implications for therapeutic interventions with the insecurely attached. In R. A. Neimeyer, D.  L.  Harris, H. R. Winokuer, & G. F. Thornton (Eds.), Grief and bereavement in contemporary society: Bridging research and practice (pp. 23–36). New York, NY: Routledge.

Ziemba, R. A., & Lynch-Sauer. (2005). Preparedness for taking care of elderly parents: First, you get ready to cry. Journal of Women and Aging, 17(1/2), 99–113.

Zinberg, N. E. (1986). Drug, set, and setting: The basis of controlled intoxicant use. New Haven, CT: Yale University Press.

Zinner, E. (1985). Coping with death on campus. Ipswich, MA: HathiTrust. Zisook, S., & Shuchter, S. R. (2001). Treatment of the depressions of bereavement.

American Behavioral Scientist, 44(5), 782–797. doi:10.1177/0002764201044005006 Zoroya, G. (2007, June 19). Troops’ 1-month breaks blocked: Psychologists cite mental

health risk. USA Today, p. A 1. Zucchi, F. R., Yao, Y., Ward, I. D., Ilnytskyy, Y., Olson, D. M., Benzies, K., . . .

Metz, G. S. (2013). Maternal stress induces epigenetic signatures of psychiatric and neurological diseases in the offspring. PLoS ONE, 8(2), 1–9. doi:10.1371/journal. pone.0056967

Zurlo, K. A. (2012). Private pension protections since ERISA: The expanded role of the individual. Journal of Sociology & Social Welfare, 39(4), 49–72.

341

Index

abandonment, 207 acceptance, 12–13, 17 accidental death

of adolescent, 120, 123–124 of child, 68 of emerging adult, 151–152 of spouse, 222–227

accomodation phase, 15 ACE. See adverse childhood

events (ACE) adolescents, 111–141

biological development, 112–114 death of, 123–125 with developmental disabilities,

136–140 developmental stage, 112 emotional expression, 116–117 friend death, 120, 131–136 grandparent death, 119–120 grandparents’ loss of, 124–125 higher expectations on, 125 identity changes in, 125–126 interventions with, 122–123 life-threatening illness in, 122 losses experienced by, 116–122 nondeath losses, 121–122 parental death, 117–119 parents’ loss of, 123–124 psychosocial development, 114–116 relationship loss, 121–122 self-esteem/identity loss, 121 sibling death, 118–119 typical and maturational losses,

125–126 adoption, 184, 185 adrenocorticotropin hormone (ACTH), 5 adults. See emerging adults; middle

adulthood; older adults; young adulthood

adult sufficiency or insufficiency, 144 advanced medical directives, 276 adverse childhood events (ACE), 85, 296 aging parents, 206, 247 aging process, 260–261 AIDS deaths, 177, 216 Alcoholics Anonymous (AA), 155 Alex’s Lemonade, 68

Alzheimer’s disease, 271 ambiguous loss, 7, 22–23, 93, 99 andropause, 204 anger, 12, 13

relationship loss and, 154 self-directed, 49–50

anniversary reaction, 6 antidepressants, 45 anxiety

death, 262 economic pressures and, 152–153 infant, 75–76 during pregnancy, 31–32, 34

ART. See assisted reproductive technologies (ART)

assisted reproductive technologies (ART), 42–43

assumptive world, 8, 18–19 attachment

maternal depression and, 74 during pregnancy, 28, 31, 33,

36–38, 40 styles, 13–14, 38, 61–62

ATTEND model, 24–25, 155 autonomy versus shame, 60 avoidance phase, 15

bargaining stage, 12 Baratz Dalke, K., 127–131 belief in a just world (BJW), 146 belief systems, 243 benzodiazepines, 45 bereavement, 8, 14, 90, 97. See also grief;

mourning in men, 149 morbidity and mortality and, 3–4, 5 perinatal, 38–39, 41, 45

bereavement exception, in DSM-5, 10, 290–291

biological developmental context, of pregnancy, 28–30

biological effects of grief, 3–5 birth, 292

experience of, 69 of sibling, 70

Boiler, J., 78–82

Index342

Bolden, N., 255–257 Bowlby, J., 13–14, 18, 31, 37, 38, 39–40,

64, 246 brain

adolescent, 112–113, 144 chemistry, 5 development of child’s, 85 emerging adults, 144 impact of pregnancy on, 29 in middle adulthood, 204 neuroanatomy of, 5

BRCA1/2 mutation, 161–164 break-ups, 121–122, 153 breast cancer, 160–164, 210, 271 “broken heart,” 4 Brooks, M., 277–281

CAIS. See complete androgen insensitivity syndrome (CAIS)

Calvert, D., 100–103 cardiovascular system, 5 care, loss of complete, 69–70 caregiver

death of, 63–65, 158 depressed, 66–67, 74–77 grandparent as, 273 nondeath loss of, 66–67 for parent, 207

Catterton, J., 218–222 Center for Conscious Eldering, 263 cerebral palsy (CP), 136 childbearing decisions, 183–184 childbirth complications

biological impact, 48–49 disenfranchised grief following, 47–56 experience of, 51–56 interventions, 50–51 psychological impact, 49–50 social impact, 50 social supports, 51

childhood obesity, 86 child protective services (CPS), 99–100 children. See also infants; preschool

children; school-aged children; toddlerhood

adoption of, 184, 185 attachment style, 13–14, 61–62 death of adult, 207–208, 267–268 of depressed parents, 66–67, 74–77 with developmental disabilities,

136–140 developmental stages, 60, 83–84 HIV transmission to, 100–103 immigrant, 103–108

intervention issues, 94–96 with learning disabilities, 86–87 leaving home by, 216–217 life-threatening illness in, 67 losses experienced by, 88–94 loss of being a child, 94 loss of custody, 99–100 loss processing by, 6 of military parents, 93 parental death, 89–90, 95 parental divorce, 92–93 parental loss of, 68, 96–99, 186–190 parental retirement and, 247 pet loss, 91 psychological development, 61–62,

86–87 sexual abuse, 91–92 sibling death, 90–91 social development, 62–63, 87–88 typical and maturational losses, 69–70

chronic grief, 22–23 chronic illness

in adolescents, 122 in emerging adulthood, 150–151 in middle adulthood, 210–211 in older adulthood, 270–271 in young adulthood, 180

class, prenatal attachment and, 40 classical grief theory, 8–16 clinicians. See therapists closure, 17 COAL, 25 cognitive changes, age-related,

260–261 cognitive impairments, children with,

137–140 community, relationship with one’s,

245–246 Compassion and Choices, 276 Compassionate Friends, 68, 97 complete androgen insensitivity

syndrome (CAIS), 127 complicated grief, 4–5, 290–291

child’s death and, 98 sudden death and, 151–152

concrete operations stage, 87 confrontation phase, 15 continuing bonds, 20–21, 90, 91, 97, 100,

119, 147, 175–178, 182, 209, 210, 215, 233, 265, 294–295

cortisol, 5, 85 Cruz, N. C., 156–160 cultural aspects of grief, 7–8, 16–-17

African Americans, prenatal attachment and loss, 40

Index 343

influence of, on mourning, 39–40 parental death and, 148 perinatal, 40 practices, 21

cumulative loss/grief, 6–7, 263, 268

death. See also loss of adolescent, 123–125 adolescent experience of, 116–120 of adult child, 207–208, 267–268 anxiety, 262 bereavement and, 3–4 cafes, 274 of caregiver, 63–65, 158 of child, 68, 96–99, 186–190 children’s understanding of, 62,

63, 65, 87 of cousin, 210, 218–222 death with dignity laws, 276–277 developing viewpoint about, 261–262 of emerging adult, 151–152 emerging adult’s view of, 146 end-of-life issues, 274–277 of friend, 120, 131–136, 149–150,

181, 269 of life partner, 174–178, 184, 214,

215–216, 267 of parent, 89–90, 117–119, 146–148,

173–174, 206–207 of pet, 91 of sibling, 90–91, 118–119, 208–209 of spouse, 174–178, 181, 213–214,

222–227 decathexis, 9, 10, 17 dementia, 271 denial, 11–12 depression, 10, 14, 290

economic pressures and, 152–153 maternal/parental, 66–67, 74–77, 185 in middle adulthood, 205 postpartum, 35, 76 during pregnancy, 31–32, 34, 38-39

despair, 13 developmental disabilities, 98, 136–140 developmental crises/stages

autonomy versus shame, 60 generativity versus stagnation, 204, 205 identity development versus identity

confusion, 112, 114, 115, 145 industry versus inferiority, 83–84 initiative versus guilt, 83–84 integrity versus despair, 260, 261 intimacy versus isolation, 172 trust versus mistrust, 60

Diagnostic and Statistical Manual, Fifth Edition (DSM-5), 10, 290–291

difference in sex development (DSD), 127–131

disenfranchised grief, 3, 7, 21–22 following negative childbirth

experience, 47–56 maturational losses and, 291–293

disorganization, 13, 18 divorce

child death and, 98 in middle adulthood, 212–213, 227–230 parental, 92–93, 151, 178–179 in young adulthood, 185 Doka,K. J., 21. See also disenfranchised

grief “dosing” grief, 152

double grief, 41 double jeopardy, 117, 126, 140 downsizing, 240–241 dreams, letting go of, 217–218 dual process model, 17–19, 87, 89, 94,

140, 152, 175, 234, 265, 293–294, 297

early puberty, 113–114 economic viability, loss of, 152–153,

211–212, 242 egalitarianism, 25 ego, 9, 114 elderly. See older adults elementary school-aged children.

See school-aged children Elizabeth, 51–56 emerging adults, 143–170

biological development, 144 chronic/life-threatening illness in,

150–151 death of, 151–152 developmental stage, 144, 157 economic viability loss, 152–153 friend/lover death, 149–150

grief, resilience, and healing by, 156–160 interventions with, 155–156 losses experienced by, 146–151, 156–160 maturational losses, 145 nondeath losses, 150–151 parental death, 146–148 psychological development, 144–145 relationship loss, 153–154 social development, 145 substance use disorders, 154–155 typical and maturational losses,

152–155 vs. young adulthood, 172

Index344

emotions. See also specific emotions self-regulation of, 63 emotion work, 32–33 feeling rules, 7

employment loss/transition, 171, 182–183, 211–212, 231–233, 292

empty nest syndrome, 216–217 end-of-life issues, 274–277 endorphins, 35 ephedrine, 5 Erikson, E., 60, 84, 87, 114, 153 ethnicity, prenatal attachment and, 40 executive functions, 85

Falk, D., 103–108 family home, loss of, 217 fatherhood, 70–74 fear, 6 feeling rules, 7 fertility rates, over age 30, 183 fetal anomalies, 41, 43–44 fetus

attachment to, 28, 31, 33, 36–38, 40 development of, 29, 30, 33–34 loss as experienced by, 34–35 loss of, 35–41 symbolic nature of, 30

fibromyalgia, 211 financial resources, loss of, 242 Findley, P. A., 281–286 first-time dads, 70–74 Five Vs, 45–47 formerly hidden children (FHC), 297 Foucault, M., 16 Frankl, V., 19 Freud, S., 8–9, 11, 61 friend death

of adolescents, 120, 131–136 of emerging adults, 149–150 in military, 181 of older adults, 269

friends, changes in relationships with, 245 funerals

functions of, 40 religious, 7

future, uncertainty about, 14

gay men, 177, 185–186, 216, 267 gay teens, 115–116, 121, 126 gender differences, 115, 178–179

in divorce, 213 gender roles, 126 male emerging adults’ grief, 149

generativity versus stagnation, 204, 205 genetics/genomics, 4–5, 85 Gillin, B., 190–196 Goldstein M. K., 250–253 grandparents

adolescent death and, 124–125 child death and, 99 as custodial caregivers, 273 death of, 119–120 fetal loss and, 41

Greif, G. L., 70–74 grief

accompanying bereaved in, 290–291 in adolescents, 116–117 ambiguous, 7, 22–23 biological effects of, 3–5 in children, 89, 94–96 chronic, 22–23 complicated, 4–5, 98, 151–152, 290–291 continuing bonds and, 20–21 coping with, 2 cumulative, 6–7 disenfranchised, 3, 7, 21–22, 47–56,

291–293 double, 41 in emerging adulthood, 157–159 intervention issues, 23–25 meaning-making and, 19–20 nonfinite (chronic), 22–23 perinatal, 35–41 policing of, 16, 25–26 processes, 157–159 prolonged, 290–291 psychological effects of, 6–7 social aspects of, 7–8 stages of, 11–16 time and, 6, 10 trauma and, 296–297

grief counseling, 16, 297–298 Grief Speaks, 120 grief theory

classical, 8–16 dual process model, 17–19 postmodern, 16–23 staged-based theories, 11–16 task-based theories, 8–11

grief therapy, meaning-making and, 19 grief work, 25–26 grief work hypothesis, 15–16, 25–26 group treatment, online, 7 growth

loss and, 1–2 meaning-making and, 295–296

guilt initiative versus, 83–84

Index 345

over accidental deaths, 68 parental, over child’s death, 98

Haskell, J., 253–255 health

impact of grief on, 3–5 loss of own, 67, 122

health care providers, relationship with, 50 hereditary breast and ovarian cancer,

160–164 hidden losses, 297–298 HIV transmission, perinatal, 100–103 holding environment, 297 homicide, 131–136 Hoskins, L. M., 160–164 hospice care, 274–276 hospice social workers, 277–281 human chorionic gonadotropin

(HCG), 28 hypervigilance, 6 hypothalamic-pituitary-adrenal (HPA)

axis, 5, 85

idealized child, loss of, 68–69, 72, 98 identity development versus identity

confusion, 112, 114, 115, 145 identity loss, 121 identity transformation

in adolescents, 125–126 in midlife, 217–218 in retirement, 238–241

immigrant children, 103–108 immune system, 4, 5 independence, 125 industry versus inferiority, 83–84 infants

anxiety in, 75–76 attachment, 74, 78 biological development, 60–61 death of, 68 with developmental delays, 68–69 developmental stage, 60 life-threatening illness in, 67 losses experienced by, 63–65 maternal depression and, 74–77 medically compromised, 44–45,

69, 78–82 mental health of, 77–78 nondeath losses, 66–67 premature, 44–45 psychological development,

61–62 social development, 62–63

typical and maturational losses, 69–70

withdrawal, 75 infertility, 42, 183–184 inflammatory response, 5 initiative versus guilt, 83–84 insecure attachment, 14 integrity versus despair, 260, 261 International Classification of Diseases 11

(ICD-11), 291 Internet, 176 intersex conditions, 127–131 intervention issues, 23–25

adolescents, 122–123 emerging adults, 155–156 middle adults, 218 older adults, 273–277 school-aged children, 94–96

intimacy versus isolation, 172 intimate partner violence (IPV), 99–100,

190–196 intrauterine fetal death (IUFD)

biological changes associated with, 35–36

psychological aspects, 36–39 social aspects, 39–41

IPV. See intimate partner violence (IPV)

irritation, 12 IUFD. See intrauterine fetal

death (IUFD)

Jean, 222–227 job loss, 171, 182–183, 211–212,

231–233, 292 Johnson, C. M., 131–136 just world, 146, 150, 170

Kabat-Zinn, J., 24, 25 KORU mindfulness training, 155–156 Kübler-Ross, E., 11–13, 14, 17 Kudeva, R., 47–51 Kudu, 231–233

language development, 62–63, 88 Learn to BREATHE program, 123 learning disabilities, 86–87 lesbian, gay, bisexual, transgender, queer

(LGBTQ) teens, 115–116, 121, 126 lesbian partners, 177–178, 185, 214,

215–216, 267 life expectancy, 236

Index346

life partner, death of, 174–178, 213–214, 264–267

life review (LR), 261 life-threatening illness

in adolescents, 122 in children, 67 in emerging adulthood, 150–151 in middle adulthood, 210–211 in older adulthood, 270–271 in parents, 95 in young adulthood, 180

Lindemann, E., 9–10 living wills, 276 Lloyd, M., 23–24 loss. See also death

ambiguous, 7, 22–23, 93, 99 anger and, 154 of caregiving, 66–67 of economic viability, 152–153 experienced by fetus, 34–35 experienced by school-age children,

88–94 of fetus, 35–41 growth and, 1–2 of home, 217, 228, 271–272 of idealized child, 68–69, 72, 98 job, 171, 182–183, 211–212, 231–233 of love, 153–154, 294 maturational, 2–3, 66–67, 69–70, 145,

216–218, 243–246 off-time, 2 original, 69 processing, and developmental

stages, 6 recognition of, 3 relationship, 121–122, 153–154 routine, 241 secondary, 6, 88 typical, 2

loss orientation (LO), 18, 293 love, loss of, 153–154, 294 lover, death of, 149–150

major depressive disorder (MDD), 10, 290

marital changes, in retirement, 243–244 marital quality, parenthood and,

184–185, 292 Marshall, B., 207 maternal depression, 66–67, 74–77, 185 maturational losses, 2–3, 236

in adolescence, 125–126 as disenfranchised losses, 291–293 in early childhood, 69–70, 82

in emerging adulthood, 145, 152–155 loss of being a child, 94 loss of caregiving, 66–67 in middle adulthood, 216–218 in older adulthood, 271–273 in retirement, 243–246 in young adulthood, 182–186

meaning-making, 19–20, 218, 233–234, 258, 270

child’s death and, 97–98 as growth process, 295–296 by older adults, 270 by widows/widowers, 264–265

meaning of miscarriage model, 40 medically complicated pregnancies, 43 medications, for perinatal

bereavement, 45 meditation, 273–274 Megan’s Law, 68 melancholia, 9 memorialization, of child, 97 men

bereavement in, 149 divorced, 213 gay, 177, 185–186, 216, 267

menarche, 113 menopause, 204 mental health, infant, 77–78 Michael, C., 164–169 middle adulthood, 203–234

aging parents and, 206 biological development, 204–205 chronic/life-threatening illness in,

210–211 cousin death in, 210, 218–222 death of adult child in, 207–208 developmental crisis, 204 divorce in, 212–213, 227–230 employment loss/transition, 211–212,

231–233 empty nest syndrome in, 216–217 intervention in, 218 losses experienced in, 206–213 nondeath losses, 210–213 other’s experience of loss in, 213–216 parental death in, 206–207 psychological development, 205 sibling death, 208–209 social development, 206 spousal death, 213–214, 222–227 typical and maturational losses,

216–218 midlife crisis, 205 military deployment, 64, 93, 179 military service, 179–180

Index 347

military spouse, 181 military veterans, 93, 179–181

end-of-life issues, 281–286 suicide by, 270

Miller, W. P., 248–250 mind-body connection, 4 mindfulness, 4, 5, 24–25, 51, 96, 123,

155–156, 273–274 miscarriage, 35–41, 292 mortality

awareness of, 214 bereavement and, 3–4 confronting own, 209, 237 perspective on own, 261–262

mother. See also parents death of, 148, 174 maternal depression, 66–67, 74–77, 185 motherhood, 48, 173

mourning Freud on, 9 infertility and, 184 influence of culture on, 39–40 rituals, 7

Muscarella, R., 186–190 music, 123 mutual help organizations (MHOs),

117, 155

Narcotics Anonymous (NA), 155 narrative, 17, 50, 174, 199 naturally occurring retirement

communities (NORCs)/ aging in place, 262–263

Neimeyer, R., 19 neonatal intensive care units (NICUs),

44, 45, 91 neonates, 44–45 neuroplasticity, 204 neurobiology, 5, 60, 67, 84-5, 112–-113,

144, 172, 261 newborns, 60–61. See also infants New Senior Woman, 263–264 Nguyen, H., 103–108 nonfinite (chronic) grief, 22–23 nonmarried partner, death of, 177–178,

214–216 numbness, 13 nursing home residents, 272

off-time losses, 2, 147, 173, 175–178, 200 older adults, 259–287. See also

retirement/reinvention biological development, 260–261

chronic/life-threatening illness in, 270–271 death of adult child, 267–268 developmental crisis, 260 end-of-life issues, 274–277 friend death, 269 home loss/relocation, 271–272 interventions with, 273–277 losses experienced by, 264–273 nondeath losses, 270–271 partner loss, 264–267 positive aging, 263–264 psychological development, 261–262 resilience by, 269 social development, 262–263 suicide among, 269–270 typical and maturational losses,

271–273 veterans, 281–286 viewpoint about death of, 261–262

online support groups, 176 Open to Hope, 176 original loss, 69 ovarian cancer, 160–164

palliative care, 274–276 parenthood, 173

losses connected with transition to, 184–186, 292

parents adolescent’s loss of, 117–119 aging, 206, 247 child leaving home loss, 216–217 children’s loss of, 63–65, 89–90, 95 death of, 89–90, 117–119, 146–148,

173–174, 206–207 depression in, 66–67, 74–77, 185 divorce of, 92–93, 178–179 emerging adult’s loss of, 146–148 first-time dads, 70–74 gay and lesbian, 185–186 life-threatening illness in, 95 loss of adolescent by, 123–124 loss of adult child by, 207–208, 267–268 loss of both, 207 loss of child by, 96–99, 186–190 loss of emerging adult child by, 151–152 loss of idealized child by, 68–69 loss of infant or young child by, 68 loss of young adult child by, 182 midlife adult’s loss of, 206–207 military deployment of, 93 parental separations, 64 suicide of, 164–169 young adult’s loss of, 173–174

Index348

patients’ rights, 276–277 pediatric intensive care unit (PICU), 91 peer relationships, 115, 121–122 peer support groups, 23 perinatal attachment and loss, 27–57, 294

disenfranchised grief, 47–56 fetal experience, 34–35 fetal loss, 35–41 intervention, 45–47 types of, 41–45

Perinatal Grief Scale, 35 perinatal HIV transmission, 100–103 perinatal stroke, 78–82 pet loss, 2, 91 physical changes, during pregnancy,

28–30 physician aid in dying (PAD), 276 Piaget, J., 62, 87, 114 play, 85–86 policing grief, 2, 16 Positive Aging movement, 263–264 postmodern grief theory, 16–23 postpartum depression, 76 posttraumatic stress disorder (PTSD),

123, 179–180, 181, 270, 296–297 posttraumatic growth, 90 poverty, 86 prefrontal cortex, 5, 85, 112, 144 pregnancy

biological developmental context, 28–30

developmental aspects of, 28–34 developmental tasks and

milestones, 48 fetal loss during, 35–41 medically complicated, 43 psychological aspects of, 30–32 social aspects of, 32–33 teen, 113 termination for fetal anomaly, 41, 43–44

premature infants, 44–45 prenatal development, 33–34 prenatal diagnosis, 43–44 preoperational stage, 62 preschool children

biological development, 61 death of, 68 developmental stage, 60 life-threatening illness in, 67 losses experienced by, 63–65 nondeath losses by, 66–67 psychological development, 61–62 social development, 62–63 typical and maturational losses by,

69–70

presenteeism, 99 professional identity, 236–237,

238–241 progesterone, 28, 29 Project Dawn Court (PDC), 196–200 prolactin, 29, 35 prolonged grief, 290–291 prolonged grief disorder (PGD), 296 prostitution, 196–200, 294 psychic pain, 6 psycho-education, 50 psychological aspects, of pregnancy,

30–32 psychological effects of grief, 6–7 PTSD. See posttraumatic stress

disorder (PTSD) puberty, 113–114 purpose (having, finding, making), 207,

210, 218, 237, 258, 260, 264

quarter life crisis, 145, 153 quickening, during pregnancy, 29

race, prenatal attachment and, 40 Rando, T., 6, 14–15, 151, 188, 278 Raphael-Leff, J., 30–31 recathexis, 9, 10 re-grief therapy, 12 relationship changes, in retirement,

243–244 relationship loss, 121–122, 292, 294,

153–154 in adolescents, 121–122 in emerging adulthood, 153–154 re-learning the world, 8, 19

religion, 7, 63, 65, 118, 146, 159, 223, 233. See also spirituality

faith consciousness, 119 relocation, 217, 271–272 reorganization, 18 replacement child concept, 39 residential care facility, 136–140 resilience, 64, 74, 93, 104, 159–160, 192,

267, 269, 287, 289, 297 responsibility, 125 restoration orientation (RO), 18,

266–267, 293 retirement/reinvention, 235–258, 294–295

community and, 245–246 coping with transition process, 246 experiences of, 248–257 financial losses in, 242 friends in, 245

Index 349

identity transformation in, 238–241

losses experienced in, 238–246 marital changes in, 243–244 other’s experience of loss in, 247 pathways in, 237–238 reflections on, 250–253 routine, loss of, 241 transition to, 236–237 typical and maturational losses,

243–246 reworking, of loss, 6, 65 risk-taking behavior, 113 ritual, 7, 20, 21, 22, 24, 40, 41, 57, 63, 95,

97, 174, 175, 178, 184, 218, 268, 280 routine, loss of, 241 rumination, 5, 6, 18

safe holding environment, 297 same-sex partner, death of, 177–178,

215–216, 267 Schlossberg, N., 236–237, 239, 240, 241,

246, 247 school-aged children, 83–109

academic impact after loss, 90 biological development, 84–86 death of parent, 89–90 death of sibling, 90–91 developmental stage, 83–84 immigrant, 103–108 intervention issues, 94–96 loss experienced by, 88–94 loss of being a child, 94 loss of custody, 99–100 of military parents, 93 parental divorce, 92–93 parental loss of, 96–99 pet loss, 91 psychological development, 86–87 sexual abuse, 91–92 social development, 87–88

secondary losses, 6, 88 secretory immunoglobulin A (S-IgA), 4 self-care, 16 self-esteem/identity loss, 121 sensory-motor intelligence, 62 separation anxiety, 13 sexual abuse, 91–92 sexuality, 126 sex work, 196–200, 294 Shdaimah, C., 196–200 Shapiro, J., 74–78 Shear, M. K., 266–267 siblings

birth of, 70 death of, 90–91, 118–119, 208–209 experience of young adult’s death

by, 182 fetal loss and, 40–41

SIFT, 25 six “R” processes, 14 sleep

impact of pregnancy on, 29 infants, 60–61

Smith, C., 227–231 social aspects

of fetal death, 39–41 of grief, 7–8 of pregnancy, 32–33

social constructionism, 16–17 socialization process, 63 social media, 7, 33, 53, 97, 120, 153–154,

176, 208 social roles, 115 Social Security, 236, 242 spirituality, 159, 205, 207, 243 spousal death

in middle adulthood, 213–214, 222–227 in older adulthood, 264–267 in young adulthood, 174–178, 181

stage-based grief theories, 11–16 stagnation, 205 stillbirth, 35, 36, 38–39 stress

brain chemistry and, 5 health impacts of, 4 during pregnancy, 31–32

Strong Families model, 93 substance use disorders, 154–155 sudden death, 120, 123–124, 132–133, 151,

216, 222–227 Sudden Temporary Upsurge of Grief

(STUG), 6, 148 suicidal ideation, 118, 121, 151, 270 suicide, 124, 148, 149–150

of adult child, 208 among older adults, 269–270 in military, 181 of parent, 164–169 by veterans, 270

support groups, 23, 109,117, 215, 226, 227, 234

sympathy biography, 7

task-based grief theories, 8–11 technology, 7, 33, 97, 176, 208

assisted reproductive technologies (ART), 42–43

Index350

teenagers. See adolescents temperament, 62 terminal illness. See life-threatening

illness termination for fetal anomaly (TFA), 41,

43–44 therapists

cautions for, 298–299 efficacy of, 297–298 intervention by, 23–25 self-care for, 298–299

therapy mindfulness, 51 music, 123 narrative, 17, 50

thinking abstract, 114, 118 magical, 65, 87

time children’s sense of, 64 grief and, 6, 10

toddlerhood death of child in, 68 developmental stage, 60 life-threatening illness in, 67 losses experienced in, 63–65 nondeath losses in, 66–67 psychological development, 61–62 social development, 62–63 typical and maturational losses in, 69–70

transitional objects, 61 Transition Network, 263 traumatic events

in childhood, 85 grief and, 296–297 as violation of assumptive world, 8

trisomy conditions, 44 trust versus mistrust, 60 tweens. See adolescents 12-step programs, 155 typical losses, 2

uncertainty, 14, 237 unemployment, 211–212

validation, 46 valuation, 46 venting, 46

veterans, 23, 93, 179, 181, 282–286 verifying, 46 virtual memorials, 7 visionary, 46–47 vocational/career aspirations, loss of

ability to pursue, 182–183 volunteering, 245–246 vulnerability, 6

Werner-Lin, A., 160–164 widows/widowers

in middle adulthood, 213–214 military, 179 mortality rates, 4 in older adulthood, 264–267 in young adulthood, 174–178, 181

Wilkenfield, B. F., 136–140 Winnicott, D., 61, 297, 298 women

caregiving responsibilities of, 207 divorced, 213

Worden, J. W., 10–11 Worden’s Four Tasks of Mourning,

147–148, 160 work identity, 236–237, 238–241 work relationships, loss/change of, 242

young adulthood, 171–201 biological development, 172 childbearing decisions in, 183–184 chronic/life-threatening illness in, 180 developmental crisis, 172 IPV in, 190–196 life partner death in, 174–178 losses experienced in, 173–180 loss of child in, 186–190 military service in, 179–180 other’s experience of loss in,

180–182 parental death in, 173–174 parental divorce in, 178–179 psychological development, 172–173 social development, 173 transition to parenthood in, 184–186 typical and maturational losses in,

182–186 vocational/career aspirations, loss of,

182–183