Giving up her home on Greencastle Street meant giving up the life she had built for herself over decades. The things that made Longwood House so much safer and more manageable than the house were precisely what made it hard for her to endure. Her apartment might have been called "independent living," but it involved the imposition of more structure and supervision than she'd ever had to deal with before. Aides watched her diet. Nurse monitored her health. They observed her growing unsteadiness and made her use a walker. This was reassuring for Alice's children, but she didn't like being nannied or controlled. And the regulation of her life only increased with time. When the staff became concerned that she was missing doses of her medications, they informed her that unless she kept her medications with the nurses and came down to their station twice a day to take them under direct supervision, she would have to move out of independent living to the nursing home wing. [Her son and daughter-in-law] hired a part-time aide named Mary to help Alice comply, to give her some company, and to stave off the day she would have to transfer. She liked Mary. But having her hanging around the apartment for hours on end, often with little to do, only made the situation more depressing.
For Alice, it must have felt as if she had crossed into an alien land that she would never be allowed to leave. The border guards were friendly and cheerful enough. They promised her a nice place to live where she'd be well taken care of. But she didn't really want anyone to take care of her; she just wanted to live a life of her own. And those cheerful border guards had taken her keys and her passport. With her home went her control.Gawande traces the treatment of the destitute elderly from the disgraceful poorhouses of the early 20th century. The first change, meant to be an improvement, was to hospitalize them. At the time, medicine had little to offer beyond a clean, warm bed, adequate food and water, and kind nursing for those unlucky enough not to be able to find such things at home, with family. Starting with the World War II era, the ability to treat infections with antibiotics suddenly converted hospitals from convalescent nursing homes to places of rapid, expert, intensive intervention and frequent cure. Between 1946 and 1966 the U.S. built 9,000 new hospitals. For a while, we emptied the poorhouses and placed their residents in hospitals.
We were disappointed to find, however, that the poorhouse problem hadn't gone away, despite the implementation of Social Security. The problem was that the poorhouses weren't only for the poor: they were also for those too frail to look after themselves alone. For those without family to care for them, it takes more than the ordinary pension to solve that problem. Hospitals couldn't handle the burden, and in any case were ill-suited to long-term custodial care. In 1954 Congress allocated funding for a wave of new "nursing homes": 13,000 were built by 1970.
If Gawande's wife's grandmother was uneasy about the loss of control in assisted living, she was devastated when she broke a hips and had to move into a nursing home, where she had no control over when to wake, sleep, bathe, or eat, or with whom she'd share a room; like my aunt, she was subjected to a series of abrupt changes in roommate, many of them delirious enough to keep her awake all night shouting. "She felt incarcerated, like she was in prison for being old." The home was not deliberately punitive, but it was an involuntary institutionalization, devoid of purpose or privacy.
Is it not possible, Gawande wonders, to maintain a life of freedom and worth when one has lost physical independence? Are nursing homes and their inmates doomed to fight each other for control?
In the horrible places, the battle for control escalates until you get tied down or locked into your Geri-chair or chemically subdued with psychotropic medications. In the nice ones, a staff member cracks a joke, wags an affectionate finger, and takes your brownie stash away. In almost none does anyone sit down with you and try to figure out what living a life really means to you under the circumstances, let alone help you make a home where that life becomes possible.
This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals--from freeing up hospital beds to taking burdens off families' hands to coping with poverty among the elderly--but never the goal that matters to the people who reside in them: how to make life worth living when we're weak and frail and can't fend for ourselves anymore.I haven't finished the book. I'm hoping he has some ideas. One of them certainly is going to be for elderly relatives to move in with the younger generation, an idea we've been wrestling with regarding my mother-in-law for some time. I know that she'd hate leaving her home, even to live with us. I have only to imagine leaving my home to move in with her to get an inkling of the horrifying prospect. The only thing good that could be said about the plan is that it would beat a nursing home.
We should all be so lucky as to die relatively abruptly, at home. My mother, stepmother, and father all died at home, not--unfortunately--abruptly, but at least without institutionalization.