On an autumn day in 2007, while I was visiting from California, my mother made a request I both dreaded and longed to fulfill. She'd just poured me a cup of tea from her Japanese teapot shaped like a little pumpkin; beyond the kitchen window, two cardinals splashed in her birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. She put a hand on my arm. "Please help me get your father's pacemaker turned off," she said. I met her eyes, and my heart knocked.
That's the first paragraph of Knocking on Heaven's Door, Katy Butler's memoir about caring for her parents in their declining years. If you have ever taken care of a demented or dying loved one, or if you know somebody who has done so, you should read this book. If your paycheck comes from the healthcare sector (now 18% of the U.S. economy), or if you find that even the reduced insurance rates under Obamacare are too high for your budget, you really should read this book. Like all good memoirs, it's about so much more than one person's experience.
Jeffrey Butler, a retired Wesleyan University professor of history, had dodged death several times--as a teenager, when he arrived seconds too late to jump into a car carrying several of his friends to a fatal crash; as a young soldier in Italy during World War II, when he nearly bled to death after a German shell blew off his left arm; and again in his late 70s, when a sudden stroke left him helpless.
His wife, née Valerie de la Harpe, was also a survivor. In her forties, she discovered a walnut-sized lump in her left breast. It turned out to be malignant, and her subsequent radical mastectomy--which removed not only the breast but also much of the chest wall and four cancerous lymph nodes--revealed the possibility of further metastasis. After enduring six months of radiation treatments, she chose to have her right breast removed as well. Her cancer did not recur.
Katy, their daughter, was no stranger to loss either. For much of her life she had an on-again-off-again relationship with her challenging parents and her semi-estranged brothers. After a divorce in her 20s, she had trouble committing to a new love. And yet, like her parents, she repeatedly picked herself up and kept going, creating a career as a memoirist and investigative journalist.
But experienced as the Butlers were in suffering and loss, they were not prepared for the technologically enhanced torments of old age.
Knocking on Heaven's Door tells what can happen when a person's mind and body endure a series of shocks that would naturally lead to decline and death--except that, through various technological interventions, the body is not allowed to decline along with the mind.
In Professor Butler's case, a major stroke wiped out most of his ability to function independently and set him on the road to dementia. At the same time, his heart was slowing down. A year after his stroke, over the opposition of his primary care physician, Butler was fitted with a pacemaker. His cardiologist strongly recommended it. He needed hernia surgery, the doctor said, and his heart was not likely strong enough to survive the operation. So he had the pacemaker installed, he had the surgery, and he was rewarded with another six years of increasingly hellish existence--not only for himself, but also for his wife and his daughter. His mind was shot. His body would not do what he wanted it to do. But his artificially assisted heart kept relentlessly ticking away.
Not long after her husband finally died, Valerie Butler, then 84, learned that her own heart was giving out. She would need a double-valve surgery plus a bypass operation, her doctor told her. Without surgery, she had a 50/50 chance of dying within two years. With surgery, she could live another six. There was, however, a risk of stroke ...
Valerie Butler said no. She died within months.
She died of old age, sickness, and death [Katy writes]. She died of a heart calcified and broken by six years of nonstop caregiving. She died of being eighty-four. She was continent and lucid to her end. She took back her body from her doctors. She died the death she chose, not the death they had in mind. She reclaimed her moral authority from the broken medical system that had held her husband hostage. She died like a warrior. Her dying was painful, messy, and imperfect, but that is the uncontrollable nature of dying. She faced it head-on. My brother Jonathan called it a triumph.This is not a book about assisted suicide or euthanasia. Do not read it to find ammunition for or against whatever you believe about those ethical issues, because that is not why Katy Butler wrote it. It is partly a very personal memoir about an already troubled family who found caregiving much, much harder than they ever expected. It is partly a love letter to the father Katy alternately fled and adored, and to the mother she admired but could not get along with. It is also a look at what the contemporary American approach to healthcare is doing to elderly people and to those who care for them.
And it is a clear-eyed recognition of a truth so many of us try to avoid: that it is our nature to die, that there is nothing we can do to escape death. Thanks to technology, we may be able to postpone it. We may be able to make the dying process take a lot longer (and be a lot more miserable). We can choose to add weeks to our lives and hundreds of thousands of dollars to our hospital bills by dying in an ICU rather than in hospice or at home. But we can't stave off the grim reaper forever.
If we refuse to accept our mortality, if we are willing to pay any price and bear any burden to make our lives longer (though not better), if we continue to pass healthcare laws that refuse to subsidize doctors for discussing end-of-life issues but that give carte blanche to businesses that value corporate profits over compassionate care--then death will continue to be not only an enemy, but an increasingly ferocious one.