Motherless Daughters

by Hope Edelman

  I won’t even go to doctors now unless I’m really sick, and I don’t like taking any kind of medicine. When I got the UTI, my doctor was very understanding. She explained that because of the bacteria, she couldn’t recommend any natural or homeopathic treatment that would work. I had to take the antibiotics, and I had to take the whole dose. I took two days’ worth and stopped. I just hate anything that has to do with medicine.

  Like Kelly, daughters of terminally ill mothers usually face several conflicts at once: watching the physical deterioration of someone they love, feeling helpless and angry, trying to maintain as normal a life as possible, and having to readjust each time a new crisis develops. That’s a lot to cope with at once. After fifteen years, Kelly has overcome the guilt she once felt for subjecting an ill mother to her adolescent strife, but she still mistrusts doctors and is terrified of developing cancer herself.

  Though the actual death is the most profound loss, a child whose mother dies from a long-term illness usually experiences other losses throughout its duration. The family’s previous way of life may vanish as the group reorganizes to accommodate a sick member; the active attention of one or both parents may diminish, leaving some of the child’s needs unmet; financial resources may dwindle; and a daughter’s perception of her mother might change several times. A younger daughter may, as an adult, remember her mother only as a patient, never having had a relationship with a mother who’s healthy. An older daughter may resent having to give up the interests and concerns of her peer group to spend more time at home. As the illness progresses, a daughter may have to become a caretaker for her mother—a distinct and premature role reversal that can make both sides angry and resentful.

  A daughter also finds that her assumptions about parental power are shattered. No longer is her mother an all-powerful icon in the family, the one with an awesome ability to shelter her children from distress or harm. “When a child witnesses the slow deterioration of a parent, he or she sees not only impending death but the collapse and destruction of a powerful protector as well,” Maxine Harris explains.

  Daughters of all ages might find that they have no one in the family to talk with about their fears, because their parents and siblings are preoccupied with the same stresses. A mother is a daughter’s natural refuge at times of distress, but a mother often can’t fulfill this role when she’s overwhelmed by worries of her own.

  This was particularly troubling for Stacey, who grew up as an only child in a single-parent home. Her father died when she was nine, and her mother was diagnosed with the virus that causes AIDS when Stacey was fifteen. For the next four years, Stacey took care of her mother, attended school, and tried to cope with the stigma and shame surrounding AIDS—all without the emotional support of the mother who’d been her closest confidante. “I was losing her as she was alive,” Stacey recalls. “I remember a few times when I was sick and I wanted to go and be with her, just to lie next to her and feel that comfort. But I couldn’t, because my germs were dangerous to her. I couldn’t go to her to be taken care of, and that hurt a lot. My father died suddenly, and I remember thinking, ‘I wish that I’d known, so I could be by his side.’ And there was my mother and it was the slow process, and I think that was even harder.”

  Most therapists agree that sudden death is more difficult in the short term, because all major family adjustments have to take place while shock and disbelief still fill the house. A death that’s anticipated—provided the facts are out in the open and discussed, which they often are not—permits families to prepare gradually for the loss. Thirty-two-year-old Samantha, who was fourteen when her mother died after a two-year illness, remembers how her mother tried to prepare her five children for coping without her. “She knew she was going to die, so she did certain things she thought were important from her frame of reference,” Samantha recalls. “Like, ‘How is this household going to function when I’m not here? Who’s going to clean the house? Who’s going to cook?’ She used that period of time to pull us all together and teach us how to do those things. She never said, ‘I’m going to teach all of you how to cook,’ but she was doing it from her bed. We all took turns making dinner, and each day she would explain how to cook that night’s meal. We would run back and forth between the kitchen and her bedroom to write down the recipe and get verification. So we were being taught without even knowing it.” After her mother died, Samantha and her four siblings ran the house without much turmoil, which she says helped them feel competent and self-assured, both as children and, later, as adults.

  Long-term illness also allows a family time for anticipatory grieving, in which mourning begins before the mother dies. When a daughter knows what the outcome of her mother’s illness will be, she has time to adjust to the idea piece by piece, relinquishing one hope and expectation at a time.

  As twenty-eight-year-old Beth discovered, anticipatory mourning is possible to an extent, but it’s rarely a complete process. She was twenty-four when her mother was diagnosed with cancer, and had almost two years to adjust to the idea that her mother would die. “My father says he mourned while she was sick,” Beth says. “But for me it was different. Yeah, we all cried and grieved while our mother was dying, but when it was over and she was never coming back, I really fell apart.” This kind of response is normal, says Benjamin Garber, who believes that even with time to prepare for a loss, you can’t really experience a death until it happens. “You can anticipate it, and sure, it’s easier if you’re not immediately overwhelmed, as is the case with a violent death,” he explains. “But in the long run, preparation for the loss doesn’t carry that much weight. As long as the person is right there talking and laughing and crying with you, then they’re alive. That’s all there is to it.”

  This is true when the mother is still vital and functional, but in the advanced stages of many illnesses, a patient often is in severe pain, if she is conscious at all. In such a situation, long periods of anticipatory grieving are often complicated by a daughter’s resentment that her life is on hold and—even more troubling to her—her unexpressed wish for her mother to finally die.

  “Particularly when the patient is extremely ill, and especially with teenagers, who want to be out individuating and spending social time with their friends, at some level daughters will just wish for it all to be over,” Arlene Englander says. “Which means they wish their mothers would die, because they want their lives to get back to normal, and then they experience tremendous guilt for even thinking that.”

  “Women need to recognize that in times of great stress, such extreme thoughts are normal,” she says. “It’s a very human impulse to want to live your life in a happy, healthy, productive way, and it’s a terribly stressful experience to watch someone you love in pain and know she’s not enjoying life herself. When we wish a loved one would die not only so that she’s out of her pain but also because we want our lives to continue as normally as possible, it’s neither good nor bad. It’s simply human.”

  Beth and her sister, Cecile, remember grieving throughout the twenty-one months their mother was ill. Sort of. In their family, the word cancer was viewed as a synonym for death. No one ever spoke the word after the diagnosis or discussed the poor prognosis. Even as the sisters watched their mother’s health decline and knew what the inevitable outcome would be, they tried to hide their fear from their parents, who insisted on modeling optimism and hope. So the sisters would cry in the car on the way to their parents’ house, smile and pretend to be happy during their visit, and then cry again in the car on their way home. To share their grief openly, they believed, would have been more disruptive to the family system.

  Today, Cecile understands how harmful those twenty-one months were to her. She leans forward, her chin-length hair swinging against her face. “It took a long time for me to get used to not living like that anymore,” she says softly. “I was so used to putting on that kind of show, and living at a heightened state of urgency, and panicking every time the phone rang. I cou
ldn’t grieve until about six months ago, way after the first year, and it wasn’t until things felt somewhat normal again. And then I realized that I was really angry at my mother for never talking about it, and for making me go through such a show. That one realization just made all the difference to me. It happened like this”—she snaps her fingers—“but to get to that point took me more than a year.”

  Witnessing a mother’s slow physical decline can be the equivalent of experiencing a long-term trauma . The daughter’s feelings of helplessness, anger, and fear persist. And persist. And persist. She may alternate between wanting to protect her mother and resenting her, an advance-and-retreat dance of identification and rejection that can span years.

  Holly, twenty-six, was twelve and the youngest of three children when her mother was diagnosed with ovarian cancer and fifteen when she died. The only time during our two-and-a-half-hour interview when she came close to crying was when she talked about an incident she says represents her mother’s struggle with a disease that refused to go into remission, and her own frustration and anger as an adolescent who couldn’t do anything to change it.

  I remember one time when my mother came home from chemotherapy. Tough, tough woman that she was, she drove herself home from the appointment. I was fourteen or fifteen and didn’t have a license, so she drove herself to and from this thing. She kept herself together physically from the chemo long enough to drive home successfully, but then she got home, sat down at the kitchen table with her coat still on, and threw up all over herself. I was sitting there and it was such a horrifying moment. So scary. So painful. It was such a symbol of her illness, that she threw up all over her winter coat, such a symbol of everything that was out of control. I felt traumatized, helpless, very afraid for her. I had an extreme surge of love for her at that moment, combined with fear and helplessness. I wanted to take care of her like she’d taken care of me when I was sick, but I couldn’t do it.

  I once wrote in my journal that if my mother had gotten better there might have been a rift between us, because it was such a trauma to have her be ill for so long. How could I have forgiven her for putting us through such fear and tremendous unhappiness, for backing out on me and for going away? Now I realize that if she had recovered, we would have been eventually joyful and come to a point of great happiness about that. But her illness was such a trauma that for a long time I thought it would have been impossible to get back to a normal life with her again.

  The mother who returned home from chemotherapy treatments was not the same mother Holly had emulated for her first twelve years. To an adolescent, this new mother appeared helpless and weak. The side effects of chemotherapy—nausea, vomiting, hair loss, and weight loss or gain—as well as the final stages of AIDS and other degenerative diseases can turn a mother who was once vibrant into a figure a daughter finds frightening or repulsive. In a culture that places a premium on a woman’s physical beauty, the ill mother is seen as an aesthetic deviant. The daughter, by association, feels inadequate and ashamed.

  A mother’s ability to cope with these physical changes gives her daughter clear messages about illness, stress, femininity, and body image. A mother who adjusts well to losing her hair, for example, passes along the message that appearance doesn’t define a woman, but a mother who falls into a depression and refuses to leave the house transmits messages of shame. Twenty-five-year-old Ronnie, who was sixteen when her mother died after four years of chemotherapy, says, “I always looked up to my mother’s vanity. I grew up playing with her makeup and wanting to look as good as she did. But when she got to the point in her treatment where she was, to her, ghastly, she’d look in the mirror and say, ‘It’s horrible. I can’t even look at myself. Don’t you hate me?’ She wouldn’t let her friends come over and visit because she didn’t want them to see her less than perfect.” Ronnie, who describes herself as “the kind of woman who brings makeup on a camping trip,” admits that on days when she feels ugly and depressed, she, too, isolates herself at home.

  The daughter who absorbs her mother’s anxiety about physical transformation may, after the loss, become determined to win the war against body image that her mother lost. In seeking to gain the control over her body that her mother never had, she sets rigid standards of physical perfectionism for herself. Every hair must be in place, every calorie counted. To slip, she believes, means to move one step closer to death. Eating disorders such as anorexia and bulimia are extreme examples of this need for control, but many women describe other physical preoccupations they rely on as crude barometers of their health. I know that I still wear my hair long because I remember the horror of seeing my mother crying in the bathroom the day her hair began to fall out in clumps. It’s not rational, I know—drugs, not cancer, made her lose her hair—but at some level I’m convinced that the more hair I have, the farther I am from death.

  Andrea Campbell, Ph.D., a therapist in Santa Fe, New Mexico, who frequently counsels motherless daughters, was ten when her mother died of breast cancer. She says weight became her source of security. “My mother was heavy and always concerned about her weight,” she explains. “When she was dying, she was only about ninety pounds. So when I lose weight, I get terrified I’m going to die. For eight years, I carried at least an extra ten pounds on me. Until then, I’d lose some and then gain it right back. I know I was trying to make myself feel safe.”

  A daughter’s individual identity depends on her ability to adopt some of her mother’s characteristics and reject others, a process that’s complicated when the most recent and striking memories she has of her mother are of a woman who was seriously ill. “The daughter doesn’t want to be like the mother, because that means these awful things are going to happen to her,” Naomi Lowinsky explains. “She’s going to be in a terrible state, she’s going to lose her hair. The memories of the mother are not of somebody she’d ever want to be like.”

  To separate her body from her mother’s—and therefore ensure her own survival—a daughter’s impulse is to create emotional distance between herself and her mother. Yet to attempt such a complete rejection also cuts a daughter off from the Well Mother, the one who was once young, healthy, and unencumbered by hospitals, drugs, and worry, and a woman the daughter might want to be like. “Most of the women I see, whether their mothers are alive or not, are working with their internal relationship with their mother and their capacity to mother themselves,” Dr. Lowinsky says. “The woman who lost her mother at an early age may not have access to that, because all she sees is her sick mother. Part of her work is then to bring the image of the well mother back to life, so she can have an alive relationship to apply to her own capacity to mother herself.” To do this, a daughter has to focus on the days preceding her mother’s illness. Looking at photographs of mothers taken when they were healthy and learning the stories of their lives helps us see them as they were before we were born, and in our earliest years together.

  Chronic Illness and Ambiguous Loss

  A small but notable group of motherless daughters grew up in families where mothers were living with chronic, degenerative illnesses such as multiple sclerosis or early-onset Alzheimer’s, or were kept alive in hospital settings or nursing homes for extended periods. Under such circumstances, the mothers were unable to function in the maternal role, and the daughters struggled with losses that felt ill-defined. The mother was alive, yet incapacitated; she was still considered a member of the family, yet she was unable to be involved in a meaningful way. When a mother’s condition was brought on or accelerated by childbirth, a daughter often carried guilt for her perceived role in her mother’s decline.

  Fifty-one-year-old Josephine was raised by her grandmother and her father after her mother, who suffered from multiple sclerosis, became physically unable to care for her. She was twenty when her mother died, but she considers herself motherless from a much earlier age.

  I really didn’t have a mother. She got MS when she was pregnant with me. I’m an only child. She had
brain surgery while she was pregnant. They didn’t find anything. They thought it was water on the brain and finally figured out it was MS. She started to become paralyzed by the time I was born, so my father had his mother move in to take care of me. My mother was in and out of hospitals until I was about nine, and then she went into a permanent facility. And she was there until she died, when I was twenty.

  We used to visit her every weekend, but the only thing I knew of her was of this woman who was in the hospital. Because I was too young, I don’t have any memories of her as a mother at all. She could talk, but she was bedridden. I recall very little of her mothering.

  Mothers who are institutionalized or kept alive in a permanent vegetative state for extended periods exist, to a daughter, in a noman’s-land between life and death, neither a functional mother nor a lost one. When death does come, its course and timing are usually unpredictable. As one daughter, whose mother was in a long-term, stroke-induced coma for much of her adolescence, recalls, “Even though we knew she was going to die eventually, when it happened it was still a terrible, rude shock. I thought I was prepared, but when it happened I fell apart. That’s when I realized I’d been hanging onto the hope, however slim, that as long as she was alive she might somehow get better.”

  Sudden Deaths

  Death always feels sudden, even when it’s anticipated, Phyllis Silverman says. “But when a parent simply ‘drops dead’ the assault on a family cannot be overestimated,” she emphasizes. Heart attacks, aneurysms, accidents, suicide, homicide, complications during pregnancy and childbirth, acts of terrorism, natural disasters, war, and other forms of sudden death5 throw a family into an immediate and unexpected crisis. To survive such a loss is truly a test of the human spirit. “It is one of the mysteries of our nature that a man, all unprepared, can receive a thunderstroke like that and live,” wrote Mark Twain, who lost his favorite daughter, Susy, in 1896. Life changes with the news of a moment, too quickly for anyone to adjust with grace or ease.