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The New Grief - Page 4

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Stage 1: Crisis

The new grief begins when we learn that a loved one has a terminal diagnosis. Some people are able to handle—and communicate about—this crisis better than others. A man who described his sister as “the life force” in his family described how she “went out of her way to make it as easy as possible on the rest of us” after learning that she had a malignant brain tumor. “The day after she told me about her diagnosis, she called back to apologize if she’d made me upset,” he said. By contrast, a woman told us that her husband’s mother “couldn’t handle” his diagnosis of advanced colon cancer, and hung up on her when she called to report the bad news. Throughout the next three years of his survival, the mother refused to acknowledge that her son was terminally ill. Whether the diagnosis is expected in some way or springs from a doctor’s visit like a ghoulish jack-in-the-box, the journey of learning to live with death and uncertainty has begun.

The new grief process typically starts with a sense of sadness and dread. But if a relationship with a terminal family member has been strained or alienated, the reaction may be more complicated. Consider the man who’d long harbored resentment toward a father who he believed had strongly favored an athletic brother while ignoring him. On learning of his father’s advanced prostate cancer, this man found himself feeling furious: “Now I’ll be expected to feel sorry for him!”

George, a public-interest lawyer, remembers the moment when the crisis struck home for him. After several days in which his wife, Claire, felt bloated and vaguely nauseated, she awoke to severe cramping in her abdomen. A quick visit to her ob/gyn led to a quick referral, which led to a quick biopsy, which ended some days later with a quick “see me in my office” call from her doctor. She phoned George from the doctor’s office to give him the news: she had Stage 3 ovarian cancer.

With that phone call, George’s life changed forever. He struggled to absorb the terrifying information. He found out that in Stage 3 ovarian cancer, the tumor has already spread from the ovaries to the abdomen, and that the five-year survival rate was 42 percent. Because George was several years older than Claire, he’d always assumed he’d predecease her. “It had never occurred to me—not once—that she might die first,” he said. “I was filled with dread.”

In the days immediately following the diagnosis, he did his best to support Claire, but when he was alone, he thought about how the loss of his wife would throw his own life into chaos. If Claire died, how would he raise three young children? How would he pay for everything? How could he and the kids go on without her? George felt deeply guilty worrying about such things, but he couldn’t help it. By the time they arrived for the first appointment with the oncologist, George could barely contain his anxiety.

Fortunately, the doctor was friendly and clear-spoken. George mostly listened, though on the advice of a friend, he’d brought along an old-fashioned steno book. “I took a ton of notes,” he said. He learned that his wife’s treatment plan would include everything he’d read about: surgery, a significant period of recovery from surgery, and then repeated chemo treatments. “The full catastrophe,” he said. The process would take up to six months to complete.

The oncologist was cautiously optimistic. Claire said she was confident. “I crossed my fingers and found myself wondering if they still lit candles in churches, the way they did when I was a child,” George recalled. “I wanted to light one.”

Stage 2: Unity

The potential death of a loved one typically nudges us to put complaints or grudges on hold and pool resources to address the crisis. Early on, many family members can pull together reasonably well; however, after an initial flurry of familywide support, one or two people usually emerge as the primary caretakers. Sometimes, this “stepping-up process” lets other family members “step down” from responsibility, frequently leaving the primary caretakers to carry a bigger load than they can handle. If the family can’t create a viable, ongoing support network, caregivers may suffer health problems, deep resentment, and eventual burnout.

In my grandmother’s case, the main caregivers were Aunt Irene and my mother. Both nearly 70 years old, they drove several miles each way to the nursing home to see Grandma. My mother rarely complained about going to the home every other day (my aunt covered alternate days), other than to say that listening to Grandma’s constant complaints was sometimes trying.

I suspected that Mom was understating how she felt, as her visits were not only frequent, but lengthy. The first time my mother and aunt tried to leave after an hour, Grandma reportedly turned nasty, accusing them of abandoning her. Somehow, they were vulnerable to that accusation, and their visits soon stretched to two hours or longer. Each day, one of them would either sit in Grandma’s room and try to make small talk, or accompany her to the day room and watch a succession of soap operas.

I wasn’t particularly helpful to my mother and aunt. Because Grandma complained so much, I recall feeling somewhat irritated when I visited. I pretty much tuned out and left as soon as possible, leaving my aging mother or aunt to carry the burden. I imagine they suffered in ways I’ll never know.

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4 comments

  • Comment Link Thursday, 18 August 2011 16:58 posted by Leah Forster

    This article is long overdue! I have a unique (and exhauting) perspective as a pediatric oncology social worker and the caregiver to two parents at end of life. As I help parents make excruciating decisions about their children's health care by day, I am also currently on the other side making those excruciating decisions for my parents who never wanted to talk about what kinds of care or interventions they wanted or didn't want. So it's a guessing game, but informed by what I know from working in health care social work for 20+ years: many times, death isn't the worst thing.

    It takes unflinching bravery to say no to interventions that I know have no value. And with nursing home regulations as they are (not patient- or family-centered), I must keep saying no. And it breaks my heart every time.