Healing Children's Grief

One family started me on the road of looking for possible ways of helping families in which a parent is dying from cancer. At the time, I was director of social work at Memorial Sloan-Kettering Cancer Center in New York City. I choose to tell this family's story because the family members continued to communicate with me for 15 years and thus gave me a glimpse of the change in the child's relationship with the dead parent through different stages of cognitive and emotional development. In addition, the plight of the child's sensitive and intelligent mother, her fine intuition, her quick responses to suggestions, and her daughter's excellent progress inspired me to pursue my interest in both helping and studying the process of bereavement in children.

Joel and Lisa Klein were young, really too young, not for the normal things that people do, but for dying. Both were 27 years old. They met when they were in college and decided to postpone their marriage until they had finished school. Joel and Lisa were in that enviable moment when careers begin, when dreams and excitement about the future temper the day-to-day drudgery. Both were elated when Rachel was born, confident that they could manage both careers and child rearing with the help of many friends and close family members.

When Rachel was 1 year old, Joel seemed uncharacteristically tired. Lisa noticed nodes on his neck, and he subsequently found hard lumps under his arms. His physician looked concerned and ordered a number of tests, some of which, such as the bone marrow aspiration, were painful. Both Lisa and Joel were frightened but kept their feelings to themselves. They tried to reassure one another by recalling that fatigue and swollen lymph nodes were symptoms of mononucleosis and that everyone in college seemed to get the "kissing disease." Rachel seemed out of sorts, crying and fussing when she was supposed to be crawling, saying words, exploring her world, and trying to stand. Each parent cried when alone.

Joel and Lisa met with the physician together. His voice had sounded ominous on the telephone, but he had simply said that he wanted to see them in person to review all the test results. Neither remembered the ride to his office, and they were ushered in immediately when they arrived. "Leukemia," he said, "and not the slow-growing type." It was good that both of them were there because each of them shut out different parts of what the physician said about the treatments, the side effects, and the statistics. Each felt a numbness and sense of unreality they had never experienced before. The physician recommended that they consult a well-known and highly respected oncologist who specialized in leukemia.

Joel's treatments were uncomfortable, leading to severe and seemingly unending nausea, hair loss, and weight loss. One nurse told Joel it was a good thing he was so sick because it meant that the drugs were having an effect. Joel responded positively to the treatment, and for six ecstatic months, he and Lisa told each other they had beaten the odds, never mind what the oncologist had said. Because they were a likable, engaging couple, all the physicians, nurses, and social workers who knew them treated them as peers and friends as well as patient and wife, and joined in their optimism. Both Lisa and Joel had close friends, with whom they expressed their worries and cried. At the end of six months, Joel's remission ended.

There was a second round of treatments, then a third. Both generated hope, but secretly Joel and Lisa felt a little less optimistic each time. By now Rachel was 2 ~/: years old, and Joel and Lisa no longer talked hypothetically about Joel's death. Death had become a heart-wrenching certainty.

Rachel was almost 3 years of age when Lisa visited the social worker on Joel's hospital floor for advice about how to manage Rachel, who was reacting to Joel in a way that puzzled and upset both parents. Several weeks earlier, when Joel was admitted to the hospital in crisis, Lisa and Rachel visited him, and he immediately began to cry. Lisa also cried, and both parents hugged Rachel, who became upset. This had happened a couple of times. Subsequently, when Rachel went to the hospital, she refused to go into Joel's room and seemed afraid of and angry with him. When the social worker suggested that Rachel was overwhelmed and frightened by their intense emotions because she was too young to share those feelings or to understand that her father was dying, Lisa and Joel stopped including Rachel in their intense grief.

Lisa described how she and Joel had to work out their communication with Rachel about the illness. In the final few weeks before he died, Joel told Lisa he wanted to protect Rachel from seeing his deteriorating condition by having her live with his parents "until I'm better." Although Lisa struggled with a desire to honor her dying husband's wishes, she thought it would be better to be honest with Rachel and to include her at that critical time. "If I lied to Rachel and said that everything would be fine, she'd never trust me again." She and Joel decided to be honest and direct with their daughter and to be neither overly optimistic nor pessimistic. When Rachel asked, "Will this (new medicine) make you better, Daddy?" he responded, "I really don't know, Rachel. I hope so; the doctor thinks it will make me feel better."

Lisa wisely handled the ambiguity of Joel's illness and treatment by pointing out to Rachel the subtle changes in Joel's functioning, thus validating the reality of his physical decline. At one point, Lisa went out to dinner with friends and told Rachel she could stay home with her father. "But Daddy can't take care of me," she said, obviously aware of her father's weakness and debilitation. Lisa explained that family friends would be with them so that Rachel would feel safe.

Lisa reflected on communicating with Rachel about her father's changing physical condition this way: "I think the key to communicating was answering her questions about the illness and treatment as they were happening, rather than having to explain a sudden illness crisis that wasn't attached to any concrete thing for her.

"I understand why parents are reluctant to tell their young children about a parent's terminal illness. The hardest part for me was realizing that I couldn't protect Rachel from the pain of her father's death. It hurts to watch my child in pain. But then I realized that it isn't a choice of whether she will hurt or not, but whether I will know about it."

Rachel was a strong-willed child, and her parents valued and reinforced her emerging independence. For example, in the following episode, Rachel expressed her displeasure with her mother openly:

"I came home from the hospital sad and exhausted and reprimanded Rachel for some minor misdeed. She began to cry, and I realized that my anger was displaced. So I apologized and told her that I was just tired and upset because Daddy was so sick. Then I began to cry. I thought we were having a good cry together, and I felt much better.

"However, the next day Rachel said: 'Remember yesterday I was crying? You were crying too. I was crying first. Two people aren't allowed to cry at the same time.'

"My first impulse was to say, 'I'm sorry. I'll never do that again.' But then I thought better of it and said: 'You know, Rachel, Mommies are allowed to be sad too, and they are allowed to cry too. I'm strong and I can take care of you, but sometimes I hurt too.'"

Rachel struggled with the many forced separations caused by Joel's illness. These included separations not only from her father but, most important to children of her age, separations from her mother. In addition, there was a distinct change in the affective tone of the relationship between Rachel and her mother as Lisa struggled with the emotional highs and lows that are ubiquitous during a loved one's unpredictable but relentless course of terminal illness. Rachel was distressed during this period and complained about the many times she was sent to neighbors or friends when Lisa was at the hospital caring for Joel.

• The body stops functioning when a person dies.
• Death is irreversible; the parent will not come back.
• Death is different from what happens on television; dead people do not come back again on reruns.
• Death has an emotional context: The people who loved the dead person not only feel sad but also angry or afraid.

"Something very sad happened today. Daddy died. He isn't going to be here any more."

"He can't walk any more. He can't talk. His heart stopped, and he isn't going to be any more."

"People who cared a lot for him are giving him a bath and putting special clothes on him so he can be buried." Lisa then took Rachel's man doll, found a box, and showed her how a burial worked.

"Well, Rachel, when people die they don't come back. We remember them and we think about them, but they don't come back."

Rachel still wasn't satisfied. She challenged her mother's story, "Edith came back on Archie Bunker. Why can't Daddy come back?"

"Edith was on television. That was a picture, and we have pictures of Daddy we can look at, but the pictures are not him."

"Daddy isn't coming home. He will never come home. We love him and we will miss him, but he can never come home again."

At that point, Rachel began to cry, and Lisa joined her. After two or three minutes, Lisa felt that Rachel was beginning to understand that her father was dead. But the next day, Rachel again asked when he was coming home.

Rachel attended her father's funeral and walked with Lisa and other family members from the synagogue to the burial site. When she became restless during the funeral, Joel's sister took her with her own children for some lunch.

A few days after the death, Rachel said angrily: "Daddy didn't say good-bye to me. Why didn't he say good-bye?"

"I don't know. He didn't say good-bye to me either." But after thinking about the question, Lisa prepared a better answer for when Rachel asked the question again several days later. She was becoming accustomed to the repetitive nature of her daughter's questions. This time she said: "You know, Rachel, Daddy didn't say good-bye because he didn't want to leave us. He loved us very much and he didn't want to die, so he couldn't say good-bye."

BEREAVEMENT AND RECONSTITUTION

Several weeks after Joel's death, Rachel came home unhappy from preschool and announced: "I don't have a daddy, but everyone else has a daddy." The 3year-old class tormentor had teased her about not having a daddy when all the other children had one. She then began asking Lisa to get another daddy, which seemed to signal her transition into the phase of reconstituting the family.

"Only a man can be a husband, Rachel. You are my daughter, and I really want you to be my daughter."

Rachel thought about this for a while, then said, "Samuel (Lisa's best friend's husband) can be your husband."

"Marriage is forever. I can't marry another person's husband. What I need to do is go out with different men until I find the right person. That won't be easy."

Lisa then described some of the attributes she was looking for, to which Rachel added, "And he needs to be funny, and he needs to be a good daddy."

"Yes. But for right now, it's just going to be you and me. But we can have a lot of fun, and I can take care of you while I'm looking for a husband and a daddy for you."

At last, Rachel seemed satisfied, but a few days later, she asked, "Did you find a husband yet?"

Several months after Joel's death, Lisa encouraged Rachel to recall some of the good times she had had with her father at the hospital: for example, having a meal with him on his bed when he felt well enough.

"Eating egg salad with Daddy was fun," Rachel said, "but staying with Elana (a family friend) was not fun!"

"I know," Lisa said, somewhat defensively, "but I had to stay at the hospital and take care of Daddy."

Another incident that occurred during this period suggested to Lisa that Rachel now understood and accepted the permanence of Joel's death. When Rachel and her 2-year-old cousin were playing, he asked her, "Where is your daddy?" but she didn't respond. But when he asked again, "Where is your daddy?" she said emphatically, "My daddy got sick, he got medicine that made his hair fall out, he went to the hospital, and then he died." "Oh," said the cousin.

About a year after Joel's death, Lisa felt she was ready to begin dating. However, she decided that Rachel had gone through enough traumatic separations and didn't want to subject her to a series of such experiences while she dated. "Until I'm fairly sure that the relationship has a good chance of going somewhere, I'm not going to involve my child and subject her to a series of unnecessary rejections. She has Joel's brothers, who care about her, and the husbands of some of our friends."

Typical of children in her age group, Rachel remained preoccupied with her need for Lisa to find a new daddy for her, and she expressed resentment about Lisa's need to date. Lisa explained, "Dating is a necessary part of finding the right daddy for you and the right husband for myself. It isn't easy, but I need to date to find out what a person is like."

Rachel thought for a while, then said: "Don't date at night. Date when I am in school."

Rachel stopped talking easily about her father a year or two after his death. When Lisa mentioned him, Rachel often adamantly announced that she did not want to talk about him. As time went on, Lisa worked hard to complete an advanced degree and planned a career that would give her maximum flexibility and time to bring up Rachel. Dating was easy compared with thinking about a permanent relationship, which always made her anxious. If one husband had died, it could happen again. The trauma of an unexpected tragedy that occurs at such a young age is difficult to shake.

Rachel's relationship with Joel's family became distant rather quickly when Lisa began dating, and it became even more distant when, four years after Joel's death, Lisa told his family that she planned to marry again. Rachel was 7 years old at the time. Joel's family felt that they didn't understand their daughter-in-law as well without Joel. She was involved with different people and pursuits from theirs, and now she was moving out of their suburban village. They often disapproved of Lisa's values and goals, but said little; they simply didn't see her as much. Although they invited her and Rachel to their home on holidays, she often went to visit her own family in the South instead. Their relationship with Rachel became much more formal, with little real personal content or understanding. However, they did attend Lisa's second wedding.

Before the wedding, Rachel spoke about Joel to her prospective stepfather, Robert, because she wanted him to understand something that was extremely important to her: "I like you very much, and I want you to be my stepfather, but there is one thing you should know. You will always be Number Two in my heart, and my father will always be Number One." Robert understood and worked hard to be accepted by Rachel as completely as possible. Many children express this sense of loyalty to their biological parent and retain a special and primary place for that parent when the surviving parent dates or plans to be married. It was also hard for Rachel to accept Robert because she felt jealous sometimes. She and Lisa had been "a team" for four years, and now she had to share that special relationship.

When Rachel entered first grade, at age 6 she was a bright, highly verbal, engaging, and socially adept child who showed no evidence of having any unusual problems concerning separation. Throughout grade school, she was viewed as an appealing, social child who had exceptional verbal skills. She did well in a competitive private school that drew top students in the area. In the fifth grade, she began to expect herself to do even better, to earn the very highest grades in all subjects. She felt disappointed in herself when it became clear to her that her skills in mathematics were not at the same level as her verbal abilities. That summer, she went away to camp and loved it. She showed no symptoms of distress at parting when she left.

When Rachel was 10 years of age, Lisa gave birth to a son, and Rachel was overcome with jealousy. She openly expressed her resentment about the time Lisa spent caring for her brother and insisted that she was neglected and rejected. Her grades took a nosedive, and she blamed this on her brother's presence.

In the sixth grade, Rachel was fortunate to have a male teacher who recognized and enjoyed her outstanding verbal and writing skills and encouraged her to develop them. Rachel was buoyed up by his acknowledgment, and her school performance was much better for a while. She became interested in writing poetry and wrote a poem entitled, "I Was a Tear on My Father's Cheek." She was in the midst of establishing a different, more mature relationship not only with her mother and stepfather but also with her deceased father. The poem seemed to reflect her evolving sense of her relatedness to him as she began the developmental process of forming a separate, independent identity. This relatedness was based on her memory and experience, but also on the memory of others who spoke of him. She also became interested in boys, and they certainly were interested in her. She was vivacious, enthusiastic, and able to hide her insecurities. Rachel had her mother's ability to organize and function at a highly productive level while experiencing severe internal distress.

When Rachel's brother was about 3 years old, it became apparent that he had language problems-another stress on this family system. Rachel was 13 years old at the time and was aware of her mother's increasing preoccupation with obtaining professional evaluations that might clarify the nature of her son's problem so she could arrange for his care. The stress only increased as she and Robert consulted specialist after specialist.

Unhappily for everyone, Lisa and Robert finally separated when Rachel was 14 years old. Although Rachel had resented Robert at first, she had become fond of him; in fact, she had adopted his surname in addition to Joel's. Robert had given her the stable family she had always thought she wanted. When Lisa and Robert separated, Rachel was furious, feeling abandoned and rejected because she was losing a father all over again. Robert remained a responsible provider and was emotionally supportive and involved with Rachel to the extent the separation allowed. Because Rachel felt loyal to Robert as well as to her mother, she even lived with him for a time. Lisa agreed to this because she was prepared to do anything that would help Rachel feel better about herself.

Meanwhile, Lisa struggled to divide her time among her son's special needs, her need to expand her career to compensate for the financial losses caused by the divorce, and her attempts to understand and respond to Rachel's anger and sense of loss. Rachel's depression was becoming another nightmare for Lisa.

Suddenly, Joel's family precipitated another family crisis. Upset because Lisa had remarried and moved from their community and because Rachel had added her stepfather's surname to theirs, they decided to remove Rachel from the family's will and exclude her from holiday celebrations. Thus, Rachel experienced additional feelings of abandonment and loss.

This coalescence of events precipitated a crisis in Rachel's depression, and she entered therapy. Lisa was frightened, but she carefully followed the therapist's advice about how to manage Rachel, and she was relieved when Rachel slowly began to improve. Rachel was able to make good use of therapy, and her school performance improved dramatically. She received the straight As she had always wanted, became the editor of the school newspaper, and was chosen for other leadership positions in her school. In her senior year, she was accepted by a prestigious college, which would take her away from home. She also had a boyfriend who shared her artistic interests. She was quite anxious about being separated from her mother and her boyfriend when she went away to college.

Lisa was extremely proud of Rachel's successes and increased self-esteem and was excited about her current choice of a writing career. Yet she worried about Rachel's ability to manage the separations and the possibility that her earlier problems would reappear under the stress of doing college work and being away from home. Rachel's first year at college was a highly successful one.

Although the tremendous stress that Lisa and Rachel Klein experienced is obvious, both of them also had great strengths. How did these stresses and strengths balance out? Does losing a parent at a young age especially when the loss is coupled with the inevitable separations, the well parent's sadness and dejection during the patient's terminal illness and after the death-represent a trial by fire to which some children succumb, whereas others become stronger? Does the loss result in a psychological deformity that will forever poison every close relationship?

Rachel's experience and the experiences of many other children who will be described in this book suggest a different perspective about the effect of a parent's death on a child. The death of a parent is clearly not just a single event, stress, or trauma. For the young child, it is more like a family tragedy that changes much that existed before and shakes a child's basic trust and sense of psychological predictability. It is a tragedy that requires the child to undergo a major psychological reconstitution after the death. The process of reconstitution reflects not only the family tragedy but also the child's stage of development when the tragedy occurred and the quality of the buffers provided by the surviving parent and other people in the child's life. It seems obvious that some changes that occur in children as a consequence of the parent's death remain, probably for life. However, the reconstitution is affected also by subsequent events, including a broad range of secondary stressors that occur as a consequence of the death or in addition to it.

Perhaps the concept of the "cascade" of events will improve our understanding of children's reactions in these situations over time and through different stages of development. The "cascade" is a process involving a number of events that may have a cumulative effect. Each stressful event may affect the child's self-esteem or self-confidence, which in turn shapes (and often distorts or exaggerates) the individual's perception of or response to subsequent events.

The parent's death shakes young children's emerging sense of trust in the inalienable right to the comfort and security provided by a loving parent and the emerging sense that 'the world is my oyster.' added to this is the fact that a young child's ability to process and understand an event such as death is limited. Helpful rationalizations and explanations such as "Mother loves me even though she can't be with me because someone else needs her even more" and "Every occurrence is unique unto itself, and future occurrences should not be judged on the basis of previous but unrelated events" are not available at this stage of development. Even cause and effect as a concept does not really exist, certainly not when it is used to explain an absence that causes such pain. Emerging trust, security, confidence, and self-esteem as a mirror of the esteem the young child senses from others-all these emerging good things may be altered significantly by the family tragedy.

The reconstitution that takes place after a parent's death is not like putting Humpty Dumpty together again. The surviving parent's ministrations, preparation, love, support, and ability to understand and respond to the child's despair are buffers that mitigate some of the ravages of the family tragedy and provide anchors that the child can use to construct a new Weltschauang, a view of the world that incorporates the reality of the loss. Although providing all these things to the child is tremendously difficult for a grieving parent, Lisa Klein managed to do it remarkably well.

Do vulnerabilities remain, even when the surviving parent desperately attempts to eliminate them in an effort to return the child to the person he or she was before the death? Rachel's vulnerability seemed specific and almost predictable, given her age and developmental stage when the family tragedy occurred. Her 'cascading responses' to the subsequent stressful events in her life focused on loss as the theme of her young life: loss of her father, loss of her mother when she took care of Robert, more loss of her mother after the birth of a brother who needed an extraordinary amount of attention, loss through divorce of a stepfather she had grown to love, and loss of her father's family, which rejected her. Some of these events-the surviving parent's dating and remarriage, a new sibling, a less exclusive relationship with the surviving parent- cannot and should not be prevented. However, when these anxiety-producing life events are preceded by a major family tragedy such as a parent's death, the child's perceptions and reactions may be altered no matter how well reconstituted the family relationships are during the first year or so after the death. Children who experience early loss may overreact to future losses much like the body responds to an allergen. The strength of the reaction is probably influenced by a child's temperament, previous life experiences, and the quality of the surviving parent's support.

Rachel's narrative allows a conclusion not possible in the other cases that will be presented. An event, even one as dramatic and tragic as a father's death, may still be just a single tragic event. To gain a better perspective on the power of such an event in shaping a life requires careful prospective information. I have a 14-month window into the lives of some children following the death of their parent. The glimpse into Rachel's 15-year window is humbling to the scientist seeking to predict future reactions based on previous events. But perhaps a predictive algorithm is not the best model for understanding the import of an event on future events. As will become clear in subsequent chapters, the outcome and adjustment of the children after 14 months, were powerfully influenced by other circumstances and other events, which perhaps had an effect even more powerful than the death of the parent. That is the message that Rachel's narrative underscores-the need to develop long-term, prospective narratives, which may gradually help us understand the importance of a stressful event at a particular point in the development of an individual.