On our annual family trip to Michigan, we see Bob, my husband’s grandfather. Bob will be 100 in October. He sits on the couch in front of the TV with a tray on his lap, eating a bowl of tomato soup. There’s a checkered kitchen towel tucked into his shirt to catch stray drips. On the coffee table sit Oreo cookies piled high on a plate and a bright pink glass of punch.
Bob’s eyes are small and hooded and milky blue. He has a full head of white hair (I have him to thank for my husband’s uncompromised hairline). He’s wearing cotton sweatpants and white tube socks and a cream colored sweater. We introduce ourselves so he knows who we are.
“I’m your grandson, Tony. We live in California”
“Is that so?” He says, smiling.
“Good to see you. I’m Tony’s wife,” I say too loud, shaking his hand. It is silken, with large blue veins running through like branching rivers. He’s got a firm grip and doesn’t let go.
“Well, hello there!”
1. Be Bob
I’ve been thinking a lot about how we age and die in this country. Everyone hopes to be Bob—the guy who goes peacefully in his sleep. But the truth is most of us won’t. As our species grows older, outliving our ability to remain in control of our faculties—to walk and see and remember where the bathroom is in our own homes—it’s getting harder and harder to die with any semblance of grace.
Bob, like Roger Angell and his ribald, tear-jerking New Yorker piece about life in the nineties, is a gorgeous exception. I sit next to him and try to understand what it might feel like inside his skin—remembering little about my life, or even that my wife, the woman I’ve slept next to for the last 70 years, is inexplicably gone. Just content to have vaguely familiar, nameless people around, great-grandchildren running in and out to the yard, forgetting to shut the screen door. There’s an unflappable stillness to him, a settled quality that is unfamiliar to anyone who’s still checking email and Twitter and doing home improvements—still striving. Bob, once a farmer and postal worker and golfer and husband (his wife, Irene, died last year at 93), is now just a blissfully ignorant old man. His work is done.
Bob’s six adult children, including my mother-in-law, take shifts sleeping at the house they grew up in, a small two-story Victorian with a porch and tiny rooms and floors that list at an angle and toilet seats that seem too small. They make sure he gets fed and bathed and put to bed with a glass of milk on his night table. The arrangement seems to work out fairly well. He was a practicing Catholic, and I imagine he’s counting on seeing Irene again soon, up in heaven.
2. Don’t Be My Dad
My father didn’t die nearly so well. At 74, after a 50-year career as a professor of mechanical engineering, he lost his mind. At first he’d cover his mistakes with jokes—a forced punch line after slipping up on calculating the tip at dinner. Have you noticed how forgetful he’s getting? His second wife whispered to me in the kitchen after a family meal. I hadn’t. But it wasn’t long before his colleagues politely suggested that it was time for him to retire. He’d been spotted in the elevator, the doors opening and closing repeatedly, as he stood there incapable of deciding which button to push. He could no longer locate his car in the lot. The faculty feared he was a danger to himself. Not long after, my father left his office; it’s piles of professional journals and papers, and the poster hung on the back door, “I’M GOING TO BE AN ENGINEER LIKE MY MOM,” expecting to be back.
Like so many of our elderly today, my father spent the next five years in and out of the hospital, regressing to an infantile state, with an ambiguous diagnosis: “Not Alzheimer’s, but somewhere on the spectrum of dementia. Aggravated by depression. Largely untreatable.” He’d sit in the office of a young, pretty resident at UCSF’s memory center and answer a series of inane questions: what is today’s date? Where do you live? What do you do for a living? He’d sit there and shake his head, darkly. He was sentient enough to know that the questions were insulting, and yet he got most of them wrong: It was 1976, he said. I nodded encouragingly at his errors. It was stunning how the brain—his dazzling brain!—could deteriorate so quickly.
During one horrific afternoon, we drove him to San Francisco to see a specialist. He had little control of his bladder at this point and as we crossed the bridge he became increasingly distressed. He was punching the dashboard and calling us motherfuckers. (He rarely cursed.) By the time we got to the office, he was trembling violently and unable to go to the bathroom by himself. I escorted him down the hall, stood behind him, and held his waist as he fumbled with his penis. I never imagined I’d see my father this way. No daughter should.
At the end, when he could no longer really talk or read the newspaper or do any of the things that he would have defined as having quality of life; when he was mumbling gibberish and regularly becoming dehydrated and passing out (painfully, twice in a public theater, where we’d taken my kids to see a play), the doctors persisted in trying to heal him—to poke and prod him with various tests that would make him wince even when he couldn’t express pain in words.
My sister and I repeatedly asked the doctors for advice. They rattled off an endless array of possible treatments and outcomes. Their responses became laughably predictable. We were desperate for someone with authority to say to us: the jig is up; he’s not getting better.
The thing about Western medicine is, for all of its tele-wizardry and genomic mapping and precision cures, it’s remained barbaric in this one way—it doesn’t allow people to die with dignity. Michael Wolff wrote powerfully about this in his New York Magazine piece, “A Life Worth Ending.”
During a few visits, we found that our father’s arms and legs had been strapped to the bed because he’d tried to get up and wander about. To see a man you’ve lionized your entire life be tied down like an animal is head-crushing. I’d leave the hospital and drive home, screaming.
I don’t blame the doctors. In most places on earth, doctors have no choice but to treat you, or suffer legal repercussions. Once you enter a hospital, your body no longer belongs to you. It belongs to the medical establishment and to the state and, by logical extension, to God. The Hippocratic oath that doctors take when they graduate from medical school states, “I will give no deadly medicine to any one if asked, nor suggest any such counsel.” But what if giving a “deadly medicine” is the most humane treatment there is?
There’s a slippery liminal space at the end of life—when you’re still conscious enough to choose to die, but not sick enough for others to lawfully help you do so. A friend recently reminded me that her grandmother was active in the Hemlock society. An avid reader who was going blind, her grandmother implored doctors for prescription drugs so she could take her own life. They refused, as was their ethical duty to do. So, one day she took matters into her own hands and threw herself out the window of her apartment building. For her, a life without books was no life at all.
3. Use Palliative Care and Hospice Services
Back to my dad. After a bad cough landed him once more in the hospital, we begged the doctors and social worker to order hospice. They finally did so. After a week at home, he contracted pneumonia. We let it progress without treatment.
A quick definition of terms: palliative care is independent of prognosis and can be had and any stage of an illness to ease suffering, alongside curative treatment; hospice is actually a Medicare benefit that provides palliative care for terminally ill patients who are close to death. Hospice can last a while, but decisions about treatment are made with the assumption that the patient is not going to improve. (If you haven’t heard BJ Miller, the UCSF doctor who runs San Francisco’s Zen Hospice talk about end-of-life care, go do that now. He helps people who are dying every day, and is shatteringly eloquent on the topic.)
If you have decent insurance, a hospice referral means a hospital bed will be delivered to your home and a nurse will come check on you daily and make sure you are “kept comfortable.” For my father that meant that we could administer him morphine, drip by drip, under his tongue. I was surprised to hear that 40 percent of Californians die in hospice. That’s a very encouraging statistic.
In those last hours with my father, we played Yiddish music, put cold compresses on his head and chest, and whispered in his ear that he’d soon see his mother and brother whom he’d lost many years before. (Maybe he heard us—they say your auditory sense is the last one to go.) I slept on his couch that night, and held his hand in the early morning light. His body was pale and thin, but he still had the large gentle hands that used to hold the scruff of my neck as young girl when we crossed the street. His last breath was so undetectable, I had to ask the nurse if he was gone.
4. Write an Advanced Directive
There’s a lot of talk about taking control of how you die. My father had an advanced directive, but it was so crude in its instruction—basically don’t revive me if I have a catastrophic event like a heart attack—that it didn’t help us make any of the decisions we were faced with during his decline.
Some have the foresight to write elaborate directives, asking to be brought to a remote place to have a last moment of transcendence, or to be surrounded by family at home, or be bathed and wrapped in white cloth and buried in a pine box. But more often than not, people don’t write anything down or muster the courage to bring up the end of life with their loved ones at all, leaving death at the wheel, playing the dirty trick of steering for them.
5. Support the Death with Dignity Movement
The right to die is gaining ground, if at a glacial pace. As of 2014, euthanasia is legal in the Netherlands, Belgium, and Luxembourg, while assisted suicide passes in Switzerland, Germany, Albania, Colombia, and Japan. OK, there’s Oregon’s Death with Dignity Act. And Vermont, Washington, and Montana support assisted suicide—that’s four out of 50 states.
The Anglican archbishop Desmond Tutu just came out as a public advocate for the right of terminally ill people to end their own lives. A deeply spiritual man, he recently told the Observer, “I revere the sanctity of life—but not at any cost.” There’s an Assisted Dying bill being hotly debated in England’s House of Lords as I write this.
Will my exit plan be legal in California by the time I need it to be? I sure hope so. I have my father’s wide face and long legs and stubbornness. I’ll likely acquire his dementia one day, too. I’ve been telling my husband that my long-term care insurance will be a bottle of booze and a bottle of pills. But that’s an asinine thing for someone my age to say. How will I stockpile those pills if no one will prescribe them? And will I really have the grit to take them—or shove myself out of a high window—when I still have the presence of mind to do so? I doubt it.
I don’t want to die like my father. He was a man who took pride in his resourcefulness and skill and attention to detail—changing the oil in his car, poring over taxes, writing epic letters of recommendation for his students. But in the end, he was forced to yield control, and we were unable to restore it. I now know that there are steps one can take to soften, if not rewrite, that ending. I ask Bob if I can take a picture of him to remind myself what it looks like to be old and happy.