Being Mortal: Medicine and What Matters in the End (17 page)

Then one resident was diagnosed with Alzheimer’s disease. “I took care of him for a couple years,” Carson said, “but as he progressed, we weren’t ready for that.” He needed around-the-clock checks and assistance with toileting. She began to think she’d reached the limits of what she could provide and would have to put him in a nursing home. But his sons were involved with a charity, the Cure Alzheimer’s Fund, which raised the money to hire Sanborn Place’s first overnight staff member.

A decade or so later, just thirteen of her seventy-some residents were still independent. Twenty-five required assistance with meals, shopping, and so on. Thirty-five more required help with personal care, sometimes twenty-four hours a day. But Sanborn Place avoided becoming a certified nursing home or even an assisted living facility. Officially, it’s still just a low-income apartment complex—though one with a manager who is determined to enable people to live in their own homes, in their own way, right to the end, no matter what happens.

I met a resident, Ruth Barrett, who gave me a sense of just how disabled a person could be while managing to still live in her own place. She was eighty-five and had been there eleven years, Carson said. She required oxygen, because of congestive heart failure and chronic lung disease, and she hadn’t walked in four years, because of complications from arthritis and her brittle diabetes.

“I walk,” Barrett objected from her motorized wheelchair.

Carson chuckled. “You don’t walk, Ruthie.”

“I don’t walk
a lot
,” Barrett replied.

Some people shrink to twigs as they age. Others become trunks. Barrett was a trunk. Carson explained that she needed twenty-four-hour assistance available and a hydraulic lift to safely move her from her wheelchair to the bed or toilet. Her memory had also faded.

“My memory is
very good
,” Barrett insisted, leaning into me. Unfairly, I asked her how old she was. “Fifty-five,” she said, which was off by only three decades. She remembered the past (at least the distant past) reasonably well, though. She never finished high school. She married, had a child, and divorced. She waitressed at a local diner for years to make ends meet. She eventually had three husbands in all. She mentioned one of them, and I asked her to tell me about him.

“He never killed himself working,” she said.

Her desires were modest. She found comfort in her routine—a leisurely breakfast, music on the radio, a chat with friends in the lobby or her daughter on the phone, an afternoon snooze. Three or four nights a week, people gathered to watch movies on DVD in the library, and she almost always joined in. She loved going on the Friday lunch outings, even if the staff had to put her in a triple layer of Depends and clean her up when she returned. She always ordered a margarita—rocks, no salt—despite its being technically forbidden for a diabetic.

“They live like they would live in their neighborhood,” Carson said of her tenants. “They still get to make poor choices for themselves if they choose.”

Achieving this required more toughness than I’d realized. Carson often found herself battling the medical system. A single emergency room visit could unravel all the work she and her team had done. It was bad enough that, in the hospital, her tenants could be subject to basic medication errors, left lying on gurneys for hours (which caused their skin to break down and form open bedsores from the pressure of the thin mattresses), and assigned doctors who never called Sanborn Place for information or planning. The residents were often also shipped off to rehabilitation centers where they and their families would be told that they could never go back to apartment living again. Carson gradually worked out relationships with individual ambulance services and hospitals, which understood that Sanborn Place expected to be consulted about care for its residents and could always take them back home safely.

Even the primary care doctors the residents saw needed education. Carson recounted a conversation she’d had that day with the physician of a ninety-three-year-old woman with Alzheimer’s disease.

“She’s not safe,” the doctor told her. “She needs to be in a nursing home.”

“Why?” Carson replied. “We have bed pads. We have alarms. We have GPS tracking.” The woman was well cared for. She had friends and familiar surroundings. Carson wanted him just to order some physical therapy.

“She doesn’t need that. She’s not going to remember how to do that,” he said.

“Yes she is!” she insisted.

“She needs to be in the nursing home.”

“‘You need to retire,’ I wanted to tell him,” Carson recounted. Instead, she said to the patient, “Let’s just change your doctor, because he’s too old to learn.” She told the woman’s family, “If I’m going to waste my energy, it’s not going to be on him.”

I asked Carson to explain her philosophy for enabling her residents to continue to live their own lives, whatever their condition. She said her philosophy was, “We’ll figure this out.”

“We will maneuver around all the obstacles there are to be maneuvered around.” She spoke like a general plotting a siege. “I push probably every envelope and beyond.”

The obstacles are large and small, and she was still sorting out how best to negotiate many of them. She hadn’t anticipated, for example, that residents themselves might object to her efforts to help other residents stay in their homes, but some do. She said they would tell her, “So-and-so doesn’t belong here anymore. She could play bingo last year. Now she doesn’t even know where she is going.”

Arguing with them didn’t work. So Carson was now trying a new tack. “I say, ‘Okay. Let’s go find a place for her to live. But you’re going with me, because you could be this way next year.’” So far, that has seemed enough to settle the matter.

Another example: A lot of the residents had pets, and despite the increasing difficulties they had with managing them, they wanted to keep them. So she organized her staff to empty cats’ litter boxes. But the staff balked at dogs, as they required more attention than cats. Recently, though, Carson had worked out ways that her team could help with little dogs, and they’d begun allowing residents to keep them. Big dogs were still an unsolved problem. “You have to be able to take care of your dog,” she said. “If your dog is running the roost, it may not be such a good idea.”

Making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does. The routine solutions haven’t yet become well defined. So Carson and others like her are figuring them out, one person at a time. Outside the first-floor library, Ruth Beckett was chatting with a group of friends. She was a tiny ninety-year-old woman—more twig than trunk—who had been widowed years ago. She had stayed on in her house alone until a bad fall put her into a hospital and then a nursing home.

“My problem is I’m tippy,” she said, “and there’s no such thing as a tippy doctor.”

I asked her how she’d ended up in Sanborn Place. That was when she told me about her son Wayne. Wayne was a twin born without enough oxygen. He developed cerebral palsy—he had trouble with spasticity when he walked—and was mentally delayed, as well. In adulthood, he could handle basic aspects of his life, but he needed some degree of structure and supervision. When he was in his thirties, Sanborn Place opened as a place offering just that and he was its first resident. Over the three decades since, she visited him almost every day for most of the day. But when her fall put her in a nursing home, she was no longer permitted to visit him, and he wasn’t cognitively developed enough to seek to visit her. They were all but completely separated. There seemed no way around the situation. Despairing, she thought their time together was over. Carson, however, had a flash of brilliance and worked out how to take them both in. They now had apartments almost next to each other.

Just a few yards away from where I was talking with Ruth, Wayne sat in a wing chair sipping a soda and watching people come and go, his walker set to his side. They were together, as a family, again—because someone had finally understood that little mattered more to Ruth than that, not even her life.

It didn’t surprise me to learn that Peter Sanborn Place had two hundred applicants on its wait list. Jacquie Carson hoped to build more capacity to accommodate them. She was, once again, trying to maneuver around all the obstacles—the lack of funding, the government bureaucracies. It will take a while, she told me. So in the meantime she’s created mobile teams that can go out to help people where they live. She still wants to make it possible for everyone to live out their days wherever they can call home.

*   *   *

THERE ARE PEOPLE
in the world who change imaginations. You can find them in the most unexpected places. And right now, in the seemingly sleepy and mundane precincts of housing for the elderly, they are cropping up all over. In eastern Massachusetts alone, I came across almost more than I could visit. I spent a couple mornings with the founders and members of Beacon Hill Villages, a kind of community cooperative in several neighborhoods of Boston dedicated to organizing affordable services—everything from plumbing repair to laundry—in order to help the elderly stay in their homes. I talked to people running assisted living homes who, against every obstacle, had stuck with the fundamental ideas Keren Wilson had planted. I’ve never encountered people more determined, more imaginative, and more inspiring. It depresses me to imagine how differently Alice Hobson’s last years would have been if she’d been able to meet one of them—if she’d had a NewBridge, an Eden Alternative, a Peter Sanborn Place, or somewhere like them to turn to. With any of them, Alice would have had the chance to continue to be who she was despite her creeping infirmities—“to really live,” as she would have put it.

The places I saw looked as different from one another as creatures in a zoo. They shared no particular shape or body parts. But the people who led them were all committed to a singular aim. They all believed that you didn’t need to sacrifice your autonomy just because you needed help in your life. And I realized, in meeting these people, that they shared a very particular philosophical idea of what kind of autonomy mattered most in life.

There are different concepts of autonomy. One is autonomy as free action—living completely independently, free of coercion and limitation. This kind of freedom is a common battle cry. But it is, as Bill Thomas came to realize on his homestead in upstate New York, a fantasy—he and his wife, Jude, had two children born with severe disabilities requiring lifelong care, and someday, illness, old age, or some other mishap will leave him in need of assistance, too. Our lives are inherently dependent on others and subject to forces and circumstances well beyond our control. Having more freedom seems better than having less. But to what end? The amount of freedom you have in your life is not the measure of the worth of your life. Just as safety is an empty and even self-defeating goal to live for, so ultimately is autonomy.

The late, great philosopher Ronald Dworkin recognized that there is a second, more compelling sense of autonomy. Whatever the limits and travails we face, we want to retain the autonomy—the freedom—to be the authors of our lives. This is the very marrow of being human. As Dworkin wrote in his remarkable 1986 essay on the subject, “The value of autonomy … lies in the scheme of responsibility it creates: autonomy makes each of us responsible for shaping his own life according to some coherent and distinctive sense of character, conviction, and interest. It allows us to lead our own lives rather than be led along them, so that each of us can be, to the extent such a scheme of rights can make this possible, what he has made himself.”

All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties.

This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but to expand them, in the name of living a worthwhile life.

*   *   *

LOU SANDERS WAS
on his way to joining the infantilized and catatonic denizens belted into the wheelchairs of a North Andover nursing home when a cousin told Shelley about a new place that had opened in the town of Chelsea, the Leonard Florence Center for Living. She should check it out, he said. It was just a short drive away. Shelley arranged for her and Lou to visit.

Lou was impressed from the first moments of the tour, when the guide mentioned something Shelley barely noted. All the rooms were single. Every nursing home Lou had ever seen had shared rooms. Losing his privacy had been among the things that scared him most. Solitude was fundamental to him. He thought he’d go crazy without it.

“My wife used to say I was a loner, but I’m not. I just like my time alone,” he told me. So when the tour guide said that the Florence Center had single rooms, “I said, ‘You must be kidding!’” The tour had only begun and already he was sold.

Then the guide took them through it. They called the place a Green House. He didn’t know what that meant. All he knew was, “It didn’t look like a nursing home to me.”

“What did it look like?” I asked.

“A home,” he said.

That was the doing of Bill Thomas. After launching the Eden Alternative, he had grown restless. He was by temperament a serial entrepreneur, though without the money. He and his wife, Jude, set up a not-for-profit organization that has since taught the Eden principles to people from hundreds of nursing homes. They then became cofounders of the Pioneer Network, a kind of club for the growing number of people committed to the reinvention of elder care. It does not endorse any particular model. It simply advocates for changes that can transform our medically dominated culture of care for the elderly.