What happened to my grandmother would not happen to me, I vowed at twenty-seven. She was eighty-nine and at home when her heart failed and a nurse s aide resuscitated her with adrenalin and CPR. For the next ten years, my dignified, well-coiffed Omi, who made me tiny heart-shaped cookies for every birthday, lived in a nursing home, disoriented and blind, her hair looking as if she’d been electrocuted, her arms black and blue from “falling out of bed.” I hated going, especially since the only thing she said, over and over, was “Liebe Gott, Liebe kind, ich will das nicht.” I don’t want this.
The year before she died, I stopped visiting her. I told my mother she “didn’t know me anyway,” which I believed, even if she squeezed my hand when I held hers long enough. It was right after my fourteen-year-old collie (whom my grandmother loved) was put to sleep after two months of being carried everywhere and cleaned up after. The good-bye was awful; we all loved the dog, but she didn’t suffer, not like my grandmother whom I couldn’t help, hand squeeze or no.
I was forty-seven when I was diagnosed with breast cancer, and images of my grandmother kept coming back to me. We were again holding hands, only this time it was I who was trapped in an institution with the power to stick pins and tubes into me for as long as I lasted. The thought, even after a good prognosis (no chemotherapy needed), was more frightening than the idea of being dead. As soon as I recovered from surgery, I signed a living will, joined the Hemlock Society, hoarded Valium pills, and spent hours lecturing my husband and children on how I believed in the quality of life. I even rehearsed a last-night scenario for when I’d had enough. I would gather everyone around me, look at old albums, hug, kiss, cry, and then they’d leave—and I would take every pill I’d hoarded. Maybe my husband would sneak back and hold my hand.
That game plan helped me through four good years, especially the first year when every ache, every time I was tired, was a dark omen, the beginning of the end. Knowing I would not lose my dignity, I would not lose my power to keep control, made me able to enjoy life, no matter how long I had. I cut pink dogwood branches for my kitchen, wrapped myself around my husband every night, and stuck my chin out at Death, willing to play his game, my way.
But lately, as more people I know begin facing the issue of dying, I’m less sure of the game. Not because my resolve has changed, but because I see others who were always strong-willed and practical, grabbing at whatever straws of hope are offered. My college friend with an inoperable brain tumor, my mother-in-law with terminal emphysema and cancer, my colleague s husband with metastic prostate cancer, all spent their last months immersed in medical procedures that prolonged only misery. And unlike my grandmother, who died before there were living wills and health proxies, they did this by choice. This unnerves me because they, too, had made vows; it was dying that changed them.
“One accepts the burden of life,” says seventy-year-old Fay Dodworth in Anita Brookner’s Brief Lives, “knowing that the alternative is simply death, non-existence, non-feeling…so that one becomes willing to take on all the mishaps, all the tragedies, if they are the price to be paid.” I want her to be wrong. I want to believe in people like Betty Rollins mother in Last Wish, who lived life fully even after surgery and chemotherapy, until there was no hope left, only pain. Then, with her children’s support, she swallowed pills from Holland and died on her own terms.
I want role models like Aunt Lil, who my mother-in-law, Rose, admired for years, “Aunt Lil was right, taking sleeping pills. Much smarter than my mother who suffered so,” Rose used to say, waving Lil s good-bye letter at me from her favorite armchair by the window. But a year later, bedridden and down to sixty-five pounds, my mother-in-law never mentioned Aunt Lil. She had an oxygen tube full-time in her nose and took one tranquilizer plus two heart pills (to steady her beat) every four hours, as directed. If the nurses aide forgot, she reminded her.
What was stopping her, a strong woman who cried that she wanted to die every time we visited, from behaving like her aunt? Was she so afraid of becoming blank, a nothing? (I was writing a lot to prevent that, stashing away parts of my life, carefully filed under Essay, Fiction, Poetry, to assure something of me was left.) Or was she too physically weak to take her own life? Had she waited too long, especially with a husband who kept saying she’d get better? Once, when his dad was out and his mother was begging to die, my husband hinted at options like not taking her pills or taking too many, but she didn’t answer. As if she didn’t hear.
That game plan helped me through four good years, especially the first year when every ache, every time I was tired, was a dark omen, the beginning of the end. Knowing I would not lose my dignity, I would not lose my power to keep control, made me able to enjoy life, no matter how long I had. I cut pink dogwood branches for my kitchen, wrapped myself around my husband every night, and stuck my chin out at Death, willing to play his game, my way.
But lately, as more people I know begin facing the issue of dying, I’m less sure of the game. Not because my resolve has changed, but because I see others who were always strong-willed and practical, grabbing at whatever straws of hope are offered. My college friend with an inoperable brain tumor, my mother-in-law with terminal emphysema and cancer, my colleague s husband with metastic prostate cancer, all spent their last months immersed in medical procedures that prolonged only misery. And unlike my grandmother, who died before there were living wills and health proxies, they did this by choice. This unnerves me because they, too, had made vows; it was dying that changed them.
“One accepts the burden of life,” says seventy-year-old Fay Dodworth in Anita Brookner’s Brief Lives, “knowing that the alternative is simply death, non-existence, non-feeling…so that one becomes willing to take on all the mishaps, all the tragedies, if they are the price to be paid.” I want her to be wrong. I want to believe in people like Betty Rollins mother in Last Wish, who lived life fully even after surgery and chemotherapy, until there was no hope left, only pain. Then, with her children’s support, she swallowed pills from Holland and died on her own terms.
I want role models like Aunt Lil, who my mother-in-law, Rose, admired for years, “Aunt Lil was right, taking sleeping pills. Much smarter than my mother who suffered so,” Rose used to say, waving Lil s good-bye letter at me from her favorite armchair by the window. But a year later, bedridden and down to sixty-five pounds, my mother-in-law never mentioned Aunt Lil. She had an oxygen tube full-time in her nose and took one tranquilizer plus two heart pills (to steady her beat) every four hours, as directed. If the nurses aide forgot, she reminded her.
What was stopping her, a strong woman who cried that she wanted to die every time we visited, from behaving like her aunt? Was she so afraid of becoming blank, a nothing? (I was writing a lot to prevent that, stashing away parts of my life, carefully filed under Essay, Fiction, Poetry, to assure something of me was left.) Or was she too physically weak to take her own life? Had she waited too long, especially with a husband who kept saying she’d get better? Once, when his dad was out and his mother was begging to die, my husband hinted at options like not taking her pills or taking too many, but she didn’t answer. As if she didn’t hear.
“I’ll take it,” he said. “But if you rather do nothing, I’ll support you, if that’s what you end up wanting.”
“Adeal.”
We shook on it, and I relaxed, my fate assured—until I heard about my colleague’s husband, who was back in the hospital. We’d met at a party a few months after we’d both been diagnosed and treated for cancer. He, like me, had been told “they got it all” and he, like me, was full of resolutions that if they didn’t, then “six good months was better than two miserable years any day.” He wasn’t going to squander health care and his children’s inheritance just to endure life at any cost. He’d just read that most medical bills—tests, x-rays, specialists, surgeries, procedures, pills, you name it—came in the last six months of life. Senseless, we both agreed.
But now, three years later, he was doing chemotherapy indefinitely, his wife just told me last week: “It had spread to the spine, and the doctor would say nothing more. We’re taking life week by week, hoping the pain will ease.” She was worried, she said. She didn’t even know what bank accounts they had and where. I told her to ask, but she felt that was an act of betrayal. He had to bring up the subject first.
She didn’t want to sound as if she were waiting to get rid of him. She didn’t want to be downbeat, as if treatment were a waste of time. She didn’t want to acknowledge that he was abandoning her. I knew about all this, how much easier it was to say, “You’re fine,” instead of “What do you want before you die?” I had done it with every dying person I knew.
But I’d do better with myself. I wasn’t going to pretend my life was going on when it wasn’t. “Death is just another life passage. We should plan for it the way we would a wedding or a birth,” I had heard on an NPR interview with two hospice nurses who treated the dying. “YES!” I thought, fortified, and went to buy their book, Final Gifts—something else for my family’s reading, if, no WHEN, I needed it.
There’s a real coming-to-terms with that word. As a child, I’d say, “If I die” and why not? Children who don’t, don’t sleep at night; there are too many bogey men waiting to get them. Even after I had my own children and my grandmother was dying, I was using if. I may have sensed my own mortality—maybe that’s what makes midlife so terrible—but I never said when, not until I had a mastectomy and when became so real. Saying it, so far, has made life less scary. I’ve shined the light on the bogey men and they’ve disappeared for me. I will keep it up. Maybe they will stay away.
If not (there’s that if again)…I want my end to be on my terms and guilt-free. I want to talk about it with friends and family. I want to say good-bye without feeling I should have stayed. I want to choose when I leave. I want help, the way I helped my dog. I want doctors to give me straight answers and to listen when I say, “Enough!” I want my family unjailed, if they bring me pills.
The last three will not happen easily. For despite the Dr. Kevorkians and unchecked health costs, our society is still committed to life at all costs. My eighty-five-year-old aunt with severe Alzheimers had two surgeries in her last six months, one to remove each leg. The doctors wouldn’t give enough morphine for pain because “its too dangerous,” my cousin had said. “So what options do I have?” she wept into the phone.
I shouldn’t blame her—she hated her mother s suffering—but I do. I want my children to keep me home, on my third floor, with big windows looking into the tops of oak trees. Or put me in a hospice unit (if I could get into one— there are so few), where the concern is comfort, not how many more hours, days, or weeks you live. Or help me walk down the stairs, so I can turn on the car motor and shut the garage door—or even fly to Europe for the right pills, maybe stopping in Paris for a last fling.
Yes, I do have options, if only I know when to act. Leave too soon, the way I did when I left boring parties that got better after I went home, and I squander life that may be worth living. (“Someone has to be in the 10% odds,” philosopher Susan Sontag reasoned twenty years ago when she chose radical chemotherapy for breast cancer—and luckily, she was.) But wait too long, and I end up like my grandmother and hapless others who get trapped in a non-life they never imagined when they were well and saying if.
Yes, timing is everything. I must remember to act as soon as hope leaves for good (under 10%? under 3%?)—before I’m too weak to plan, to resist hopeless medical promises, or the lure of an upcoming birth or wedding or anniversary, or just a forecast for a marvelous sunny Fourth of July with fireworks I still need to see.