Being Mortal: Medicine and What Matters in the End

Compounding matters, we have no good metrics for a place’s success in assisting people to live. By contrast, we have very precise ratings for health and safety. So you can guess what gets the attention from the people who run places for the elderly: whether Dad loses weight, skips his medications, or has a fall, not whether he’s lonely.

 

Most frustrating and important, Wilson said, assisted living isn’t really built for the sake of older people so much as for the sake of their children. The children usually make the decision about where the elderly live, and you can see it in the way that places sell themselves. They try to create what the marketers call “the visuals”—the beautiful, hotel-like entryway, for instance, that caught Shelley’s eye. They tout their computer lab, their exercise center, and their trips to concerts and museums—features that speak much more to what a middle-aged person desires for a parent than to what the parent does. Above all, they sell themselves as safe places. They almost never sell themselves as places that put a person’s choices about how he or she wants to live first and foremost. Because it’s often precisely the parents’ cantankerousness and obstinacy about the choices they make that drive children to bring them on the tour to begin with. Assisted living has become no different in this respect than nursing homes.

 

A colleague once told her, Wilson said, “We want autonomy for ourselves and safety for those we love.” That remains the main problem and paradox for the frail. “Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.”

 

She puts some of the blame on the elderly. “Older people are in part responsible for this because they disperse the decision making to their children. Part of it is an assumption about age and frailty, and it’s also a bonding thing that goes on from older people to children. It’s sort of like, ‘Well, you’re in charge now.’”

 

But, she said, “It’s the rare child who is able to think, ‘Is this place what Mom would want or like or need?’ It’s more like they’re seeing it through their own lens.” The child asks, “Is this a place I would be comfortable leaving Mom?”

 

Lou had not been in the assisted living home a year before it became inadequate for him. He’d initially made the best of it. He discovered the one other Jewish guy in the place, a man named George, and they hit it off. They played cribbage and each Saturday went to temple, a routine Lou had endeavored all his life to avoid. Several of the ladies took special interest in him, which he mostly deflected. But not always. He had a little party one evening in his apartment, at which he was joined by two of his admirers and broke out a bottle of brandy he’d been given.

 

“Then my father passed out and hit his head on the floor and ended up in the emergency room,” Shelley said. He could laugh about it later, when he got out of rehab. “Look at that,” she recalled him saying. “I have the women over. Then one little drink, and I pass out.”

 

Between the three days in Shelley’s home each week and the pieces of a life Lou put together the rest of the week—the assisted living home’s fecklessness notwithstanding—he was managing. Doing so had taken months. At ninety-two, he gradually rebuilt an everyday life he could abide.

 

His body wouldn’t cooperate, though. His postural hypotension worsened. He passed out more frequently—not just when he had a brandy. It could be day or night, walking around or getting out of bed. There were multiple ambulance rides and trips to the doctor for X-rays. Things got to the point where he couldn’t manage the long hallway and elevator to the dining room for meals anymore. He continued to refuse a walker. It was a point of pride. Shelley had to stock his refrigerator with prepared foods he could microwave.

 

She found herself worrying about him all over again. He wasn’t eating properly. His memory was getting worse. And even with the regular health aide visits and evening checks, he was mostly sitting in his room by himself. She felt he didn’t have enough supervision for how frail he was becoming. She would have to move him to somewhere with twenty-four-hour care.

 

She visited a nursing home nearby. “It was actually one of the nicer ones,” she said. “It was clean.” But it was a nursing home. “You had the people in their wheelchairs all slumped over and lined up in the corridors. It was horrible.” It was the sort of place, she said, that her father feared more than anything. “He did not want his life reduced to a bed, a dresser, a tiny TV, and half of a room with the curtain between him and someone else.”

 

But, she said, as she walked out of the place she thought, “This is what I have to do.” Awful as it seemed, it was where she had to put him.

 

Why, I asked?

 

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