When O makes the comment about positive pathologies, Hayes asks what they are, and I was relieved, since I wondered too. Sacks explains they are bodily excesses and “hypertrophies” or enlargements, not the losses or absences that are the more customary focus of medicine. That struck me as an apt description of how Hayes handles old age in this book. He makes mention of O needing or asking for certain sorts of help—a guiding arm for stability, the removal of socks, the fetching of nighttime pills. These are noted not as problems, lost abilities, or inconveniences but in passing as simple facts or as attributes that made Sacks even more himself, highlighting his fascinating idiosyncrasies and defining quirks.
Hayes’s take is the opposite of the normal frame in which old age is viewed as accumulated losses. For him, every life is sculpture, a work of art defined by what is present and the surrounding negative space. The usual take is that what remains among old people is just a wisp not worthy of attention. Hayes doesn’t articulate his alternative view; he shows it in his stories and photographs: all that once was but is no longer makes it easier for us to focus on and cherish what is present. Admittedly, Sacks lived what Hayes calls “a hypertrophied life,” and while his presence in old age was duly impressive, at least as impressive to this geriatrician was Hayes’s ability to present reality to the reader without apology or fanfare.
While both Hayes and Sacks might reasonably have expected Sacks to die first, since he was thirty years Hayes’s senior, Sacks considers himself healthy and hale just weeks before his terminal diagnosis. It surprises and saddens them profoundly, and no less so for his age. Not that his age doesn’t matter. He is clear with his doctors: he’s had a good, long life and it’s not quantity of time he’s after but quality, days and weeks and months in which he can continue to do those things he loves best. He wants as much of that as he can get. Being eighty-two might mean he no longer rides motorcycles or sees patients, but it doesn’t mean he doesn’t have a meaningful, enjoyable life. The best part of how Hayes relays this important message is that he doesn’t narrate or explain or expound. He lets simple facts—basic, universal, ageless facts—speak for themselves. O’s age is present, not paramount. The death of a beloved is the death of a beloved is the death of a beloved.
PLACES
“Linens!” exclaimed Emile and Lilly’s daughter. “And fresh flowers. The place is gorgeous. I could practically live there myself.”
I took a deep breath and carefully chose my words. Karen was a hands-on daughter, and I hated to disappoint her. She also was just right about the assisted living facility’s beauty and its attention to a certain sort of detail. I knew because I had cared for several people who lived there. But I wouldn’t want my own parents to move in, so I couldn’t in good conscience recommend it for hers.
“Why not?” she asked.
I explained that I had been to dozens of eldercare facilities and this one was of an increasingly common type that I think of as long on aesthetics but short on the sort of care that matters most.
“Walk around at different times of day,” I advised. “Not when you have a scheduled visit with the marketing director, but randomly. Look at the residents and the staff: Are people talking to each other and smiling at meals and during activities? When residents meet in the hallways, do they stop to chat and discuss their plans for the day?”
I paused, giving Karen time to take in these descriptions of normal life. Normal, that is, in our family homes and in communal settings like workplaces, cafeterias, and colleges. I could see that she didn’t like what I was implying. It’s time-consuming and difficult to find a decent place for an old person to live if they can no longer stay in their own home or with family and friends. Karen thought she had found the right place, and I was suggesting she reconsider.
“Okay,” she said, finally. “What else?”
I continued. “Does the staff talk to the people who live there, or only to each other and on their phones? And how do the residents treat the staff? Do their interactions seem to be part of an ongoing personal relationship?” Basically, I wanted her to look at whether the staff seemed to know and like the people they assisted, or whether they treated them like widgets and tasks on a to-do list. Equally important, in the best places, residents greeted staff people by name, asked about their kids or what they did on their day off. They never demanded help as if addressing a servant or spoke to their helpers as if they were interchangeable or subhuman.
I knew Karen didn’t want her parents living in a place where half the people felt they were in prison for the “crime” of growing old and frail and the other half acted as though they were doing time on an assembly line of decrepitude.
Like most people, Emile and Lilly also would be happier in a place with people who shared their interests and some of their life experiences. It wasn’t that they all needed to come from the same background, just that there had to be enough people there with whom they’d feel an easy kinship and ideally some others who would extend their life experience in interesting ways. The place she’d chosen fit that requirement, except the people in it were so demoralized, they lost much of the potential benefits of their shared values and interests. The bottom line, I said, was that her parents needed a place not only where they’d be treated well but where they could make friends. (“My friends are all gone,” Emile said to me during a recent visit. “I don’t know what I’m supposed to do to get new ones.”)
“So,” Karen said. “Are there any places we can afford that do all those things?”
If it was sad that she had to ask, the answer I had to give was even more disturbing. Too many places meant to care for old people do too few of the things that make for a meaningful, happy life, and the monthly fees at many of the better places mean they are only available to the wealthiest Americans. Emile and Lilly had money saved, but they weren’t rich.
In a TED talk that has garnered over eleven million views, the Harvard psychiatrist Robert Waldinger used data from the longest study of human happiness16 to answer the question, “What makes us happy and healthy as we go through life?”
The Harvard Study of Adult Development began in 1938. They have eighty years of data. What Waldinger found was simple. Relationships are the key to happier, healthier lives, though not just any relationships. Quality matters more than quantity, and the happiest among us have one or a handful of close relationships and stable, satisfying marriages.
In old age, as at any age, once basic survival needs like water, shelter, and food are met, people’s well-being comes down to two things that are commonly overlooked by almost everyone, including those who operate senior living facilities, policymakers, families, and our health care system: engagement (i.e., relationships) and meaning (i.e., purpose).17 Often, though not always, the two are related, and a well-appointed facility doesn’t guarantee either.
Only the most economically fortunate can afford assisted living, continuing care communities, and the sorts of nursing homes with linen and flowers. Money improves lives across the life span, but it doesn’t guarantee meaningful relationships or a reason to get up in the morning. People can be socially isolated and lonely even when they are not alone, and in older adults, loneliness leads not just to unhappiness18 but also to functional decline and death. Even living in communal settings, older adults who feel lonely or isolated think, feel, and function less well, are less physically active, and are more depressed. The health impact of social isolation is equivalent to smoking fifteen cigarettes a day.19 All else being medically equal, loneliness increases mortality by 26 percent.20
Human beings seem to have a deep-seated tendency to prefer those like us to others. But older adults don’t usually choose the segregation of a facility; they lack other options, since most homes and communities aren’t built with consideration for old people. Or they “choose” to go for the sake of their children or spouse. There are other groups we force into segregated living situations: criminals, the mentally ill, the disabled, the young. Often,
such places replicate life elsewhere. But they differ from workplaces, social organizations, and religious groups because of the participants’ involuntary or mandated presence.
Old age homes also have other traits rarely present elsewhere. As Emile noted after he and Lilly moved to assisted living, “What they don’t tell you when you move into a place like this is that you’ll see so much death.” At most residential care facilities for the elderly, or RCFEs, scarcely a week passes without someone going to the hospital or not coming out of their room. People die fairly regularly; sometimes once a month, sometimes several in a week. With time, more and more of the people who were healthy when they arrived become forgetful or need canes and walkers. These transitions impair relationships when the changed person isolates him- or herself for reasons ranging from anxiety to inadequacy and shame or is shunned by former friends who don’t want to be seen with people with disabilities. And if long-standing, meaningful relationships are the key to human happiness and you live in a place where people are constantly changing, disappearing, and dying, what are you supposed to do?
The lucky still have friends on “the outside.” But those elderly contemporaries tend to vanish as well—between the walls of their homes, into hospitals, into nursing homes and assisted living communities and other facilities, and away to other cities and states, closer to their adult children, anticipating what will come next. Those people gain some security and proximity to people they can count on, but at the cost of their social networks, familiar haunts, and personal history. In some cases, those losses are compensated for by new adventures, places, people, and opportunities. In others, the accumulated losses and effort of forging new relationships takes a toll. At all ages, some people adapt better to change than others. In old age, dementia, loss of hearing or vision, or the ability to walk with confidence or significant distances makes these transitions more arduous.
Moving into an institution, however nice, is among people’s greatest fears as they grow old. As we age, we don’t stop wanting control over our lives and schedules or enjoying the familiar objects and rhythms of our own homes. “Eldercare” institutions represent the opposite of adulthood and freedom, and their social and personal implications are mostly negative. People can be deemed no longer safe at home, safety being the primary and too often the only factor considered, and sent to one against their will. In nursing homes, almost everyone has the sense of being removed from society and warehoused as punishment for doing the very thing we all do: living.
People vary in their ability to express their distaste for this transition. A wheelchair-bound woman in her eighties whose cousin was moving out of their shared apartment and into a son’s home in Southern California said she would take the risk of ending up on the floor in pain for hours or days just so long as she could remain in her home. A childless nonagenarian refused to see doctors because they tended to put her in the hospital or tell her she couldn’t continue living alone in her apartment. When her grandniece somehow convinced her to let me do a housecall, she denied all symptoms, though some were evident despite her efforts to conceal them. Only when I was seated on the kitchen floor cutting toenails she hadn’t been able to reach for over a year did the truth come out: she’d rather die than go into one of those places; in fact, by comparison, having visited some friends after they’d been moved into facilities by their families, death looked pretty good.
But then there was also this: the thin, unkempt woman who blossomed at a board and care home with regular meals, help with bathing, and people to talk to. And this: for years, my father said the only way he’d leave my childhood house was feet first. He said something to that effect the day we went to some friends’ housewarming party in a particular assisted living apartment complex—the same one he thrived in a few years later.
Homes are always better than institutions. Not all families are supportive, interactive, respectful, and loving, and not all nursing homes, hospitals, group homes, and other institutional settings for older adults are Dickensian horror factories. But homes are structurally more likely to be inviting than institutions. Although some people do terrible things to their relatives, most people reserve the majority of their love, generosity, and kindness for their kin. Institutions are bureaucracies, impersonal by definition and structurally focused on cost and efficiency. Those priorities affect residents both directly and indirectly through the procedures and people tasked with getting them through their days. It’s both a matter of what is present and what is missing.
There’s one last, critical problem with institutions. They deprive not only their residents but also everyone else of the cross-generational interactions essential to a full human experience. Confronted with another person’s reality, we can less easily make assumptions about them and fill in the blanks with our own beliefs and prejudices. Living in communities of people of all ages, we form relationships that inspire learning, anger, ingenuity, discomfort, frustration, love, and creativity—normal, human relationships. In those bonds and battles, we imagine our own futures, relive our pasts, and recognize our shared humanity.
COMFORT
We got the call from our friend Ping on a Sunday afternoon, and by Tuesday evening Cathy was dead.
Ping was distressed, concerned about her friends: a family who had lived next door to hers for over thirty years. The wife was dying, her husband was devoted but unprepared, their youngest daughter was very pregnant, and their two sons lived on the East Coast.
“They need help,” said Ping, “and hospice isn’t cutting it.” Although not in health care, Ping had cared for each of her dying grandparents and knew what a family needed to make that happen.
Cathy’s cancer diagnosis had come five years earlier. She’d had rounds of treatment that helped enough that she’d been able to keep working for a couple of years. After her first relapse, she began working part-time, and when the cancer spread and she began feeling ill, she stopped altogether. That was a year or two earlier, and a few weeks before Ping called us, Cathy had been put on hospice.
When she could no longer climb the steps up to their bedroom, Cathy’s husband moved their bed into their large, sunny kitchen. The previous week—just a day or two before we got the call—Cathy had still been able to talk with her family and walk a bit in the house with help, although already she wasn’t eating much.
Friday the pain worsened. Her hospice nurse started her on morphine around the clock. Cathy got weaker and sleepier but seemed more comfortable. Now they were having trouble caring for her.
“There’s nothing there,” Ping said. “I went to the pharmacy and bought diapers, mouth swabs, all that. And I’ll show them how to turn her and clean her, but they might need more help.”
Once upon a time, a hospice would have provided all that. They also would have come out when things got worse so quickly—to reevaluate, provide essential supplies, adjust medications, educate, and prepare and console the family.
In many cases, they still would, but since hospice transitioned from vocation to industry, you could no longer reliably count on any of the many hospice agencies in San Francisco to do the right thing. Some were trying to make money in a burgeoning industry; others were just trying to stay viable as regulations forced them to choose between doing what they knew their patients needed and not having their bottom lines turn red. The care a patient received increasingly seemed to depend on luck: which nurse was assigned, how busy the hospice was, who was on call during a crisis. I couldn’t tell what was going on with Cathy’s hospice, only that they weren’t meeting her needs or her family’s.
Cathy’s worsening pain and need for morphine meant her situation had changed. The family’s many phone calls to the hospice that weekend meant the lead-up to her death had arrived.
Each time they called, they were told not to worry and that their regular nurse would visit on Monday. Because Cathy’s family had never helped anyone die before, they accepted that advice. Until her diaper was wet and they couldn’t fi
gure out how to clean her up and change it. Until her lips cracked and her tongue looked shellacked and they didn’t know whether that was to be expected or a problem they needed to address. Until Cathy was writhing and they didn’t know how to help.
Having called the hospice, and called again, and been told the nurse would come Monday, they thought they couldn’t call back, that they’d already been helped. Both the hospice’s regular nurse and the ones on the phone seemed harried, with too many patients and not as much patience in answering their questions and calls for help as the family would have liked. Nor did they consult her longtime cancer doctor; he’d made clear that once Cathy moved to hospice care, he was done. Unable to bear seeing her mother so uncomfortable, her daughter had gone next door to ask Ping for help.
It’s a rare family in which at least one person doesn’t know how to care for a child. Yet, though birth and death occur in human lives in a 1:1 ratio, and human mortality is holding steady at 100 percent, it’s common for no one in a family to know how to help someone die. This wasn’t always the case: for millennia people died at home.21 With the medicalization of aging and dying after World War II, that changed. By the 1980s, five out of six deaths took place in hospitals.22 Generations grew to and through adulthood without seeing or helping with a death. In the 1990s the trend began to reverse. In 1974 there was a single hospice agency in the United States; by 2013 there were 5,800. Now one in three deaths occur at home,23 and over 80 percent of hospice patients in the United States are over age sixty-five.
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