The Long Goodbye

Watching Someone You Love Accept Death
A study of bereavement.
April 8 2009 12:49 PM

The Long Goodbye

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Illustration by Deanna Staffo. Click image to expand.

A few weeks ago, I spoke by phone to Holly Prigerson, a clinical researcher on grief at the Dana Farber Cancer institute at Harvard. She told me something that lodged in my brain. Research has shown that when a terminally ill patient "accepts" her death, the bereaved—her family and friends—typically find their grief more manageable than when a terminally ill patient is in "despair" about her death. It is, of course, difficult to study "grief," because the salient feature of grief is that it's not monolithic or singular; it's personal and variable. That said, there are many universal features of grief, I've discovered from talking to and hearing from others who've seen loved ones die. And one seems to be this, the ameliorating influence of watching your loved one accept his or her death.

Needless to say, witnessing the acceptance is painful in its own right. One conversation stands out to me. It took place at the hospital about 10 days before my mother died. We had taken her there because she woke up one morning in a delirious fever, though she had seemed her usual self the night before. We didn't know it at the time, but her liver had begun to fail. She was in the hospital for six days. For two, it seemed as though she'd never be coherent again. But on the third morning, she woke up clear-headed. A mini-resurrection, I thought; the rock rolled back from the cave. My brother had spent the night on the couch and was serving her breakfast when I got to the hospital. "Hi, Meg," she said cheerily; just to hear her tone—her old loving tone—shook me.

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Our conversation took place a few days later. I had stayed overnight with her in the hospital, and I was trying to find a local oncologist so the hospital could release her. At this point, my mother wanted deeply to go home, but I couldn't get the nurse to give us permission, because my mother's doctor was in New York. What they wouldn't say, but what we knew, was that we needed a local doctor because time was short and more emergencies were bound to occur. It was a Saturday, and the only oncologist around was a doctor named Malefatto. After a silent double take—his name, traced back to Latin roots, sounded a lot like Dr. "Wrongdoing" or Dr. "Badly Done"—I asked the nurse to send him to our room when he did rounds.

Dr. Badly Done turned out to be kind. And he did well something that is easily done badly: He told my mother she had a few days or weeks left to live, a fact she had not quite taken in. It was his job to tell her that she had to decide whether she wanted to become a "hospice patient"—to receive only pain management rather than medicine that might help slow down, say, her liver failure. He said something about "what remained to be done"; my mother misunderstood him and said she didn't want any chemotherapy. He corrected her: "There's really no more chemotherapy we can do," he said. In that moment, I saw my mother realize, anew, what she had realized earlier that fall when her primary doctor told her there were no remaining treatments. "So," she said slowly, "there is nothing left to do?" "No," said Dr. Malefatto. Her face grew still. I could see how strange this was to her, as it was to me. Five days earlier, she'd been walking around, even going to work for an hour. Now she couldn't stand without one of us lifting her. How had we gotten here so fast? Then she looked at me. "I have to call your father and tell him," she said.

Later that day, her four sisters and her mother came to say goodbye. My mother sat in the living room of her hospital "suite," with her legs poking out from her hospital pants, beside potted plastic plants and a 1960s-style Zenith TV. She and her sisters sat and joked and reminisced. My mother had been nervous about the visit beforehand, but now she relaxed. One sister asked my mother what her favorite color was. (Blue.) My grandmother was quiet. At one point, she gave my mother a garden angel and a piece of paper. "I couldn't sleep last night," she said. "And in the middle of the night I remembered this prayer I had taped above your crib when you were a little girl, and I wrote it down for you." My mother often bridled at religious gestures—she was a lapsed Catholic—but now she didn't. She read the prayer and said, "Yes, I remember waking up and looking at this prayer when I was little. I'll put it by my bed."

I was overwhelmed, and I went back to my dad's house to take a run and to let them all be together. When I returned to the hospital, my mother was alone, sitting in bed, looking contemplative. "Hi, Mom," I said. (How many more times will I say that? I wondered.) "Wasn't that nice?" she said immediately. I sat at the end of the bed and began to give her a foot massage, which I did a lot in those last three weeks—it helped take her mind off her pain, which increased every day. "I thought so," I said. "That's why I left for a while." "It was nice," she said. "We laughed a lot. I want them to remember me with a sense of humor." She grew quiet. "It was hard to say goodbye to them." She paused and stared at her hands. She had begun to have a pronounced inward quality, a withdrawn beauty, as if she were already on her way to another world; it made her seem even younger than her 55 years. "But not the way you'd think." Then she looked at me and said, "It's good to have time to contemplate the end of your life. I mean, when else do you do it? When do you really think about death?"

"It is good?" I asked tentatively, as I rubbed more lavender lotion into her cracked soles.

"It's not what I would have thought," she said. "I'm not afraid. I feel I will still be here." Then she began to talk about what she wanted. She wanted her hospital bed to be in the living room, so she could look out the picture window at things that "would last a long time." She wanted to look at the fir tree on the lawn. And the pond. Just that year, a great blue heron had made a habit of stopping in the pond to fish. We would see him rise up out of the water, his wingspan at once awkward and magnificent. It was nearly Christmas, and she wanted us to buy a tree to be in the room with her bed. She talked about my brothers, and my dad, and said again that she wasn't afraid, though she was sad about "sappy" things.

"Like what?"

"Like Christmas. And my birthday." I took some lavender oil and put it behind her ears. She tilted her chin up like a child so I could sweep her hair back. She loved lavender, and it was supposed to be calming. "I'm sad about the things I have a lot of memories of, of the days when the whole family was together," she continued. "That's why I'm sad about Christmas and my birthday."

I began to cry. Through tears, I said, "I'm going to miss you so much." This is when a  moment I keep going back to happened. I thought she would get tears in her eyes or melt in that special way that mothers melt—or, at least, that she usually melted—when she saw one of us kids in pain. Instead, she looked at me, and said, "I know," with a quiet calm. She had a funny look on her face, a look I had never quite seen directed at me before, of appraisal and remove. In that moment, I had the sense that she was letting me know something, that she thought I would be OK. This is what happened: Parents died, while children lived, and, in some sense, it was meant to be. Even if we both felt the moment had come too soon. This was not the response I wanted, but the authority of her look stilled me. I wiped away my tears. "I know," she said again.

Now, in the worst moments of grief, my mind often goes back to that night in the hospital as I exhaustedly rubbed her feet. I think of that moment when she said, "I know." And it calms me. Her voice had the strange motherly knowledge that nothing approximates (except, of course, fatherly knowledge). Even though—or actually because—she didn't respond as I'd expected, that moment has become a form of comfort. My mother was giving me a command: Be OK.

After my mother died, many friends recommended Buddhist books to me, among them Gehlek Rimpoche's Good Life, Good Death and Sogyal Rinpoche's The Tibetan Book of Living and Dying. These books preach nonattachment—the idea (as I take it) that we need to let go rather than clutch—and acceptance of the impermanent state of life. The first I can't really understand, but the second seems crucial to me. At times, Buddhism (as filtered through Western self-help speak) strikes me as cruelly sanctimonious and callous; one routinely encounters the story of the angry cancer-riddled woman who consults a monk, learns to accept her death, and—voilà!—is healed. I have rarely been angrier than I was when I read: "Tibetan Buddhists believe that illnesses like cancer can be a warning, to remind us that we have been neglecting deep aspects of our being, such as our spiritual needs. If we take this warning seriously and change fundamentally the direction of our lives, there is a very real hope for healing not only our body, but our whole being."

At the same time, I do take to heart what a book like Good Life, Good Death has to say about what acceptance and a "good death" might be. Its ideas are not novel: Rimpoche mainly counsels acknowledgement of what is taking place and a kind of letting go on the part of both the ill and the soon-to-be-bereaved. This is good advice, though not every temperament is able to heed it, and that's where I get stuck every time. Acceptance isn't necessarily something you can choose off a menu, like eggs instead of French toast. Prigerson, the Harvard researcher, told me that much of the current clinical thinking on grief has concluded that some people are inherently primed to accept their own death with "integrity" (their word, not mine), while others are primed for "despair." Most of us though, she said, are somewhere in the middle, and one question researchers are now focusing on is: How might more of us in the middle learn to accept our deaths? This sounds touchy-feely, but it has, as she pointed out, real consequences for both the dying and the bereaved. For one thing, the terminally ill make clearer decisions about their end-of-life medical care when they have acknowledged their illness; for another, watching them acknowledge their death helps us, in turn, accept it, too. My brothers, father, and I witnessed my mother in traumatic, painful moments I'm sure we'd rather forget. Cancer is not a gentle disease. But in this one regard at least, my mother had what Buddhists and psychologists would call a good death. Which is to say: She accepted it.

"I don't want anyone to be afraid to ask me questions," she told me that night. We had no idea that three days later she would lapse back into a coma-like state and never speak again. How could we? Even in the midst of acceptance, we were always bargaining for more time. We still lived inside Zeno's Paradox—the idea that if you go halfway toward something over and over, you never actually arrive. Mathematicians call it a paradox, but most of us take it to be a reality until proven otherwise. Or, at least, I did.

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