Twice now, I have secretly wished a parent would hurry up and die. I loved them both and felt guilty for wishing they’d go, but both Mom and Dad reached a point where life appeared more painful than I could imagine wanting to endure for long. At the end, my father was curled in a ball, unable to straighten is back or open his hands, and strung out on pain killers. Due to the drugs or the stroke he had after his last operation, his speech was constructed like refrigerator poetry, the words and phrases randomly selected from a tin of magnet-backed plastic pieces. He addressed persons long dead. During our visits, my brother and I exchanged identities fast as hats, playing each others’ roles or reviving the part of great uncle Frank. Particularly irritating were the incomprehensible mumblings hinting at past sexual liaisons. Who was the raven-haired Caribbean flame? Couldn’t he have told us about her over a beer so we’d at least know who he was raving about?
Mom’s departure was equally demented, but the nonsense familiar. She didn’t need to visit the doctor, she was taking herbs that would cure her breathing problem. An MD was unnecessary, she was channeling eight doctors. Spirit guides told her that she would simply vanish from the earth when the time came. We would forget her for a year and then we would gradually remember her, our grief would fade before it could even trouble our sleep. The reality turned out less tidy. The breathing problem she thought to be asthma brought on by allergies was was actually edema brought on by breast cancer metastasized to the lungs. Her attempt at herbal treatment delayed conventional medical care until it was fruitless for anything but treating the pain. In the end, she required a constant supply of oxygen and could only talk in short spurts. She breathlessly described a fantasy island care facility and a loud Christmas party to which she hadn’t been invited. Ironically, she died December 23, just before a holiday celebration.
My role was to visit when I could, call when I couldn’t, tell her that I loved her—and pay her bills. In her last years, the symphony, the theater, and whale watching all took precedence over her electric bill. She was afraid I might balk at paying for concert tickets, but she was not embarrassed to ask for help keeping the power on. I admired her determination not to allow something as practical as heating her apartment interfere with her enjoyment of the arts, but I would have appreciated a more honest request for financial help. She canceled her Medicare Part B insurance some months before the cancer caught up with her. She was certain she would not need it. She had better uses for one hundred dollars a month. Maybe she was right, but my brother and I will be paying the bills for her oncologist and cremation for some time.
My mother’s decision not to seek conventional medical treatment until her right arm was swollen to three times it’s normal size was not unique. In this country, poverty is a significant factor in determining whether a patient will receive medical care, as well as a factor in the quality of that care. In their book, How We Do Harm: A Doctor Breaks Ranks about Being Sick in America, Otis Webb Brawley and Paul Goldberg tell the story of a patient at Grady Memorial Hospital in Atlanta who did not seek treatment for her breast cancer until her right breast fell off, what Brawley describes clinically as an automastectomy. Doctor Brawley is the chief medical and scientific officer and executive vice president of the American Cancer Society. He notes that Grady Hospital sees a couple of these horrific cases per year. There are many reasons why a person might not seek treatment. Brawley mentions the proximity of Grady hospital to Tuskegee, where doctors performed medical experiments on black men in the 1930s, as an enduring source of skepticism within the african-american community about our health care system. It is hard to place my college and university-educated mother in the same category with an under-insured black woman who’s concerns about maintaining her employment and health care coverage for her children, who’s fears about the effects of chemo and radiation therapy, and who’s unease with the medical community, were stronger than her fear of an untreated cancer, yet they had much in common.
My mother’s fears were no less deadly. The logistics of living alone and depending on public transportation while receiving chemo and radiation therapies are daunting. Her fear of debilitating therapies certainly added to the emotional toll of her cancer. A previous bout with a tumor when she was a young woman had ended with the surgical removal of a chunk of muscle from her leg. Her feeling that my father had not supported her emotionally through the crisis was a contributing factor in her decision to divorce him. I had a moment of insight when I visited her at the nursing home where she spent her last days. She spoke with childish delight about all the attention she was receiving from the staff of the facility. She had been afraid she would be abandoned without proper care or emotional support when she could no longer care for herself. Characteristically, she never mentioned either her disease or her fears to her children.
My mother felt conventional medical training teaches doctors to ignore useful alternative treatments. She questioned the motives of drug companies and the doctors that prescribe their products while receiving financial benefits from them (another issue Brawley and Goldberg address). The depth of her skepticism about conventional medical education and practice is hard for me to fathom. Nevertheless, I know it contributed to her decision not to seek conventional treatment. The financial hardship she shared with Brawley’s breast cancer patient was another significant factor. Like many poor people, she was faced with difficult choices between paying for insurance and health care or giving up the activities that made her life worth living.
My father was not wealthy, but a steady income and consistent contributions to his retirement funds throughout his career kept him comfortable even after he stopped working. High-end medical insurance allowed him regular medical attention. But none of his caregivers ever addressed his morbid fascination with the circumstances of his end. He planned for nursing care long before it was needed, having decided that he would suffer a prolonged death. He put himself on nursing home waiting lists, filled out their applications, and fretted that his savings would run out before his Parkinson’s disease killed him. He planned for a painful end, but never took steps to prevent it. An exercise bike stood untouched for years in the front foyer of his home. He never lost his taste for ice cream and sweets, even though his weight and inactivity contributed to his joint pain and loss of mobility. He never questioned his doctors, never looked for alternative treatments, never tried to enroll in a drug trial or experimental treatment program for his Parkinson’s. Instead, he considered joining the hemlock society, a right-to-die group which provided information for people considering suicide in the face of terminal illness. But Parkinson’s sneaks up on you slowly; he never came to a decision about ending his life.
Dad was right about the protracted and painful end. His second wife ran out of steam before he did. She got him into a care facility and promptly drank herself to death. He still had five years to go.
I struggle with acceptance. In darker moments, it feels as though my parents both gave up before their illnesses made capitulation unavoidable. They gave up in anticipation of fatal illness, my father through passive acceptance of a disability that others have shown can be managed if not defeated (think of Michael J. Fox’s graceful efforts), my mother through her determination not to seek conventional treatment for her cancer. Are these selfish thoughts? Perhaps. Ultimately, it is impossible to put myself in my parents’ shoes or to know what would have happened had they made different choices.
I have my own unreasoning fears. Every time I cannot pull a word or name from memory, I think about getting tested for Alzheimer’s. But what would be the point? If I were diagnosed, would the treatments available be worth the cost of knowing the future? I do not want to know that I am destined to lose the intellectual capacity I value most in myself. I live alone. A loss of capacity would necessitate placement in a care facility manned by strangers, people to whom my memory lapses would mean little. No-one would challenge my fading identity. I go to the gym instead of the doctor, hoping that the rush of blood through my arteries will clear the plaque from my brain and that the exercise-induced release of endorphins will quell my morbid thoughts.