America is generally what Dr. Therese Rando, in her book, Grief, Death and Dying, terms a “death denying” society (as opposed to “death accepting” or “death-defying” societies). Much of the language we use to describe death shows this, as in “passed away,” or “grandma is sleeping” or that “better place” to which we talk about the dead as “transitioning.” We tend to hush our voices when we speak about death. And we often act as though it’s rude to address the terminally ill about it, as if they’ve sprouted a bulbous second nose on their foreheads. Or like Gregor Samsa in Kafka’s classic tale, The Metamorphosis (a surreal story of terminal illness), it’s as if the dying have awakened one morning transformed into a giant cockroach, alien to those around them. We talk of “battles” with illness, of a “siege” or a “fight” — language of war. Or we confront death with emotions akin to Dylan Thomas’ famous “rage, rage” at the “dying of the light,” a fine, enduring poem, but not, in my opinion, a very healing attitude toward that final life event we will all experience, usually first with others before ourselves.
I’ve done hands-on care for the dying three times. The first was for an aunt (by marriage) who, after a diagnosis of colon cancer, my family took into our home. She was a remarkable person, with an old-world, very German attitude toward hardship, independent and tough enough to have run a one-woman dairy farm. Willful and strong, she chose to go out with a minimum of medical care, largely, I think, because she was so loath to pay one thin dime for anything, the most thrifty person I’ve ever known. Her one request was that we keep jugs of well water from her farm in our house, as she complained about the taste of “town water,” and we did this. In her final days, she refused all painkillers — my only regret is that I lost the family argument to coax her or even force her into taking something for the terrific pain she suffered (my daughter still has disturbing memories of her Aunt Mae pounding the wall with her fist, night after night, the last two weeks). But other than this, her death seemed exactly right, with so many family members present: my wife, our daughter, her nieces, her nephews, my older brother, all of us attending to her in shifts, much as dying must have been practiced in old-world agrarian societies since times beyond memory. What we did best: While she still could, we assisted her in getting out to say goodbye to her community, to be honored at Grange Hall dinners and other gatherings, reinforcing her sense of having lived a full, publicly valued life; and we helped her to complete difficult legal papers, according to her wishes. These small good things most contributed to what I think of as her final healing.
I believe there’s a big difference between curing an illness and healing. For the dying, healing can mean a sense of a life finally in its place, in the community, and far more touchy, by working through family estrangements and disputes (what family doesn’t suffer these?) so they might be resolved or at least set aside under an honorable truce.
With my first wife, this was certainly so. She had been sick a great deal, most of her life had suffered from manic-depressive illness. She was also a cancer survivor, declared “in the clear” for more than a decade. Then a terrible diagnosis: A different large cell cancer had spread to her bones, her lungs and her brain, and she had at most two months to live. We were separated by then, my failing as a husband that I had fled the marriage, not able to cope. Still, we remained best friends. We would have divorced if it weren’t for those “pre-existing condition” clauses demanded by shameful health insurance companies — on her own, no health insurance would cover her, not for any price. (The Affordable Care Act has changed this, so people like us no longer face certain bankruptcy because of illness.) When Amy called me with her terminal news, I dropped everything to manage her care for her until she died.
Over the next five weeks, her process of dying became a healing gift. We talked through so much that had set our marriage off track, reviewing our 28 years together, bonding over what we had achieved as a partnership and celebrating (to paraphrase from Wordsworth) our little, nameless, unremembered acts of kindness and of love. She had been a professional actress, then a teacher of theater in community college. She directed her dying as much as she could, like a complex, five-act play. She elected to use a home care nursing service rather than hospice to retain more control than a hospice service would allow. The first week, we attended to her legal affairs — having survived a serious cancer, how could she not already have done this? According to a recent Pew Research survey, America is such a death-denying society that more than a quarter of our senior citizens haven’t yet made plans for their deaths; and among people under 50, about two-thirds are without adequate provisions.
For the second and third weeks, we staged visits — three and four a day, each carefully constructed, like a dramatic scene, so she could say goodbye to her friends, then her family. Then came two weeks of living hell — the chucks, the bed pads, the vomit basin, the diaper changes, the I.V. drips and, harder still, how the mental intensity of the dying can cycle through such extremes, with terrible mood swings and disturbing static, like a car radio stuck on “scan” mode through all the stations on the dial of a brain. My regret: With the home care service, I did not take enough breaks, convinced I should be there all the time, until the physical and mental exhaustion became overwhelming, that “caretaker burnout” the guides to death and dying warn about. My advice: Find some way to get away from the bedside, even for an hour or two, at intervals; if friends and neighbors offer to help, say “yes” without hesitation. Make sure to eat regularly. Take naps. Take vitamins. Whatever assistance is offered, accept it, say thank you. Put another way: Think how not letting others help may be depriving them of a gift of healing. Finally, no matter those hard, messy days at the end, we did pull it off, together — a successful production. Amy died at ease, feeling completed.
Five years ago, my older brother confronted a diagnosis of lung cancer, a strange form of it — not a trace in his lungs, but in his liver. A Vietnam veteran on 100-percent disability, Steve had lived with our family most of 30 years. After his diagnosis, a painful, 18-month journey followed, through chemotherapy and radiation treatments, with all the ups and downs, often sick from poisonous drugs, then the intermittent flashes of hope toward a “cure” followed by devastating setbacks — anyone who has lived through this knows that the way we treat cancer in the 21st century is as primitive and brutal as bloodletting centuries ago. My brother had worked hard for his health — giving up smoking long before, religiously taking his medications, going to a gym every day, careful about his diet, proud that he had avoided hospitalization for his war-related disability for almost two decades. So his diagnosis seemed to him worse than unjust, and he grew angry — enraged at fate, at the universe, at God. His struggle in dying was how to rid himself of this rage and anger, how to cast it out and possibly replace it with a sense of some larger meaning.
Our good friends helped, reassuring him of their care for him; so did proximity to our family, with my beloved wife, Carola, and I both there for him, so he did not face his medical treatment or his dying alone. Each day, we did something positive — cooked a desired meal, took him to his favorite places, found a movie he liked and watched it with him. Steve played guitar and wrote songs, and he recorded his music in a stripped-down way. Our younger brother, John (who lived out of state), posted his songs on a website he still maintains (at dinkwells.org — after a pseudonym Steve had used as a folk singer in his youth). His music was a big help in gradually letting go of his anger, especially at the war he thought of as tragic and pointless, and that had damaged him by its atrocities. A recent book, There’s A Man With A Gun Over There, by R. M. Ryan, names my brother in its afterword as “a late casualty of the Vietnam war,” and maybe this is true. Toward the end, Steve and I talked a lot about his service. He couldn’t decide what words to use as his epitaph at the veterans cemetery.
The choice Steve made for his end-of-life care was hospice, paid for by the V.A. He wanted strangers to do that messy bedside care — bottom line, he did not want me changing his diapers. Hospice company representatives assured us this would not happen, other arrangements could be made. We toured the hospice facility, assuming he would be admitted there for the final week or so, and it seemed a serene setting for his last days.
In the end, the hospice company failed us — lied to us, I’ll say here. The “case manager” did not admit him into the facility. Hospice provided prescription drugs delivered to the door and in-home visits two times a month from a registered nurse, to fill out forms. When the hard time hit, it delivered only three ill-equipped, clumsy nurse’s-aid visits, then abandoned us on our own. Causing deep humiliation to my brother, I did end up changing his diapers, and doing all the rest (he did not want my dear wife, Carola, anywhere near this — he would have felt too ashamed). There are good hospice care experiences, and hospice may be the best choice. Research as much as possible about hospice before going that way. Ours is but one negative story.
Many have witnessed a “terminal lucidity” before death — a sudden burst of energy, a last flare before the end, perhaps like the one described in The Death of Ivan Ilych, by Leo Tolstoy (translated by Aylmer Maude): “At that very moment Ivan Ilych fell through and caught sight of the light, and it was revealed to him that, though his life had not been what it should have been, this could still be rectified.” For Steve, lucidity visited him four days before he finally breathed out, when, suddenly, from a coma, he sat up in bed and reached out to grab both my hands. With what strength he had left, he squeezed, and managed to speak three words. He let go and gave an “okay” sign — letting me know it would be all right, no matter what happened. Those words are now his epitaph, engraved on his cremation niche at the Veterans Cemetery in Boulder City — a good soldier’s words, one meaning of his life: For my brothers.
Douglas Unger is a UNLV English professor and author of four novels, including Pulitzer Prize finalist Leaving the Land.