Final Acts: Death, Dying, and the Choices We Make

Part One: Personal Stories

PART ONE Personal Stories VVVVVVVVVVV 13 Part One contains personal stories about death and dying. Individuals with terminal illnesses write in strikingly different voices about their uneasy standoff with death. Daughters (and a daughter-in-law), sons, and nieces write about their struggles as caretakers of and/or witnesses to the death and dying of family members . Their experiences differ—in significant ways—in these accounts of loss and gain, of bad and good deaths, of acts neglected and taken. And, like all stories worth reading, these stories make us think about our own lives and most intimate relationships.1 We open this section with two very different, deeply personal accounts of living with terminal illnesses. Diagnosed at forty-two with a rare sarcoma, Ruthann Robson—writing ten years later—is ferocious in her fight against that diagnosis. At ninety-two, June Bingham approaches her impending death from metastasized cancer with equanimity and humor. Yet both women recognize their isolation. Robson writes, “I cannot bridge the distance between my self and everyone else, including the ones I love most,” a sentiment Bingham shares. “I do not want your good death,” says Robson. Railing against the understanding of caregivers and theorists from Elisabeth Kübler-Ross on down, she does not want understanding, either.2 She wants possibility; she wants to live. Writing with dark humor, she imagines taking someone with her, if she has to die. Perhaps she could assassinate someone she considers politically evil; as a lawyer, she considers a Supreme Court justice. Above all, she does not want to be taken in by lady death’s seductions; she does not want to go gently into that good night. And she does not. Bingham’s clear-eyed approach to her forthcoming death includes humor and gratitude. She writes about being freed to eat all those foods that are no good for you “and still lose weight,” for example. She appreciates the time for “closure,” telling friends and family about her situation, even though she often comforts them, rather than being comforted. And she is thankful for hospice’s “fine work.” Before this book was completed, Bingham died, at home, surrounded by family. In other essays, caretakers get a crash course in slow dying. Nancy Barnes and Susan Perlstein write honestly and movingly about the challenges they faced when their strong-willed mothers—at eighty-four and ninety, respectively—began to fail. Barnes is up-front about her resentment at having to take on the demanding role of caretaker to her mother. She is frustrated about the conversations they never had in light of her mother’s growing frailty and refusal to acknowledge it: “We never talked about how she would cope if she had disabilities as she grew older; we never talked about nursing homes or paid companions; we never talked about death, or any arrangements she might have wanted.” Barnes adds, “We certainly never talked about the possibility of her suicide,” although earlier her mother had signed a living will, in which she expressed her unwillingness to be kept alive in a number of circumstances. Because that living will was never mentioned by mother or daughter, Barnes was surprised when she found a copy of one of Derek Humphry’s books by the bedside after her mother’s death.3 Barnes admits wishing for her mother’s end “in the face of her anguish, and the anguish she caused me.” Susan Perlstein also feels frustrated by her mother’s desire to seek every consultation and care possible, including the decision to go to the hospital’s emergency room despite previous agreements with her doctor and hospice worker not to do so. Once a decision was made, for example, to move to assisted living, Perlstein’s mother “seemed to forget the long process of choice and announced to all that I had forced her to move.” Yet the daughter respects her mother’s autonomy: “For my mother and me, this meant that, as long as she had her mental wits about her, I would respect her decisions and help to negotiate her choices with the health-care system—doctors, nurses, social workers, hospitals, hospice, and home health-care workers.” Both daughters, writing in appreciation of their mothers, share lessons learned. Barnes says she learned truths that speak to the themes of this book: “that THE EDITORS 14 whatever happens at the time of my death may...