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I've been reading Atul Gawande's fine new book, "Being Mortal," about that perennial favorite topic of mine, our insanely inadequate approach to end-of-life care.  When my aunt was enduring her final years in an assisted-living facility and, after she become bedridden with an inoperable broken hip, a nursing home, my cousins were mystified and exasperated by her unhappiness.  She had not been safe alone in her home in East Texas.  The assisted-living facility was a very nice one of its kind.  The family was reasonably attentive and generous.  Why was she always unhappy?  In describing the experience of his wife's grandmother, he almost exactly captures my aunt's woe:
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.

9 comments:

E Hines said...

Times have changed, too. Used to be, the (grand)parents lived with one or another of their children, possibly not ever having moved out in the first place, and got their old age support from family for as long as that was possible. That also was possible for nearly all of their lives, until medicine extended lives.

This was doable, in many cases, even when both parents worked, and the grandparent was home alone for some hours. My father converted our garage into a mother-in-law room explicitly so each of my grandmothers, in their turn, could die with family around, and not be instead consigned to a nursing home.

Dad hated hospitals, too. That's where people go to die. When my parents started slowing down in their retirement, having taken care of their money, they were able to buy a residence in Wesley Acres, in Iowa, a home where people could live, run down, and eventually die among friends: the facility was very much set up as a family residence. This particular one had the added advantage of being near where Mom had gown up. The place became their home, and they lived there, among folks they knew and treasured as friends, for 20 years before they died. Dad's brain, though, died shortly after they moved in, and when he finally got pneumonia and had to be moved into a hospital for care and recovery, his body followed its training, and he died a couple of days after moving in.

Family, or money, isn't always available today, though.

Eric Hines

Matt said...

The amount of moving around that people do in today's economy doesn't help, either -- it's fairly likely that, come the end of one's life, NONE of their children will even be residing in the same state. That feels like an enormous break from prior centuries, where most of a family would remain in the same place, and even the house might pass from generation to generation.

On a separate note, I do wonder whether today's legal climate contributes to the controlling tendencies of the assisted living and nursing homes -- if the home did comply with the resident's wish for less monitoring and control, and the resident subsequently died in circumstances that more control would have prevented, would the resident's surviving family subsequently sue the home for neglect?

Ymar Sakar said...

Elders were generally used to train up the warriors and herbalists of the future generations.

What else was the point to them having survived for so long?

Now instead of providing a purpose in society, they are instead a money and time sink... society is so retarded it has turned a resource into a piece of sh.

Anonymous said...

Matt, I suspect you are right. If a person wants to be left alone, and is, someone would sue for "elder abuse," likely even if the person had signed forms saying "I, being of sound mind, do not want to be pestered every hour and ordered to eat runny eggs."

LittleRed1

Texan99 said...

I've finished the book now, and he does describe some assisted-living places that find a way to preserve autonomy and dignity. They're not unreasonably expensive, either. Of course the temptation always is there to make the lives of the elderly more and more empty in the service of "safety first."

It's well worth a read.

Grim said...

We may have a head-start on this one, given that so much of the current young generation isn't getting to move out in the first place. Problem solved!

Assistant Village Idiot said...

Lying on the floor of your dear ancestral home for hours with a broken hip sucks, too.

Grim said...

Less, if you're in reach of the Scotch bar. Might want to put it on the ground-level drawers, once the babes move out.

Texan99 said...

Lying on the floor with a broken hip does suck, but being drugged and strapped into a wheelchair in case you might fall is a solution that defeats its purpose.

There are ways to balance risk against autonomy. Gawande describes some very workable assisting-living models in which 10-12 residents share a common space, but each has his own private room adjoining. The staff are committed to letting everyone sleep and wake whenever he likes. The residents get help with things like bathing without being subjected to penitentiary-style regimens. For those who aren't out-and-out demented, the philosophy is to leave risk-reward decisions in their hands. You may die sooner if you fall, or break your diet with a piece of cake, but at least you'll have been alive in the meantime.

One of the most horrible things about my aunt's place was the constant threat of the nursing wing for anyone who asked for too much help, or even who resisted help that the staff thought was essential. The residents got together constantly to gossip in hushed voices about what would get you crosswise with the most powerful members of the staff, and perhaps sent to Siberia. It was not a horribly expensive place, but not severely cash-strapped, either. It was not staffed with demons but with people subject to the ordinary temptations of power. Some of the staff instinctively knew how to preserve their clients' dignity, and some didn't. It wasn't a question of money. It wasn't even a question of professional standards of safety or prudence. It was a matter of having enough empathy to understand that many people would rather shut down and die than have their "home" robbed of all autonomy, dignity, and meaning.