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Karin Luisa

Karin Luisa

Posted: October 14, 2009 07:15 AM

Assisted Living for the Demented: Locked-Up Syndrome

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When a parent gets early dementia, it is a nightmare, unless one can afford a few acres of land, private servants, nurses and a guard at the gate (to prevent wandering) or one happens to live in a small village (preferably outside the United States or Europe), where the senile enjoy the sun sitting in cafes in village squares and are accepted as part of the community. As one geriatric psychiatrist I consulted in Washington D.C. said: "Taking care of the elderly is a corporatized activity in the United States. There isn't much leeway in the system--and the cost is the human soul."

After a week of becoming (involuntarily) a mini-expert on Assisted Living communities on the East Coast--I saw the options, even for those who still have the fortune of some money, as extremely narrow. If your elderly parent is still "normal" (a word that has currency in the AL community: i.e. verbal, engaging, "lucid", but needs "a little help"), then you can find various private versions of "hotels" or "boarding houses" for the elderly, for a minimum of $160 and a maximum of $400 a day.

a more ritzy residence
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Normally there are a few aids circulating about and perhaps a nurse on the floor (perhaps not). A good social "activity calendar" will make the whole experience seem quite collegiate and peppy (at best), or a return to kindergarten (the prevalent model). I have never seen more sing-alongs to "Old McDonald" or pumpkin carving and finger-painting since my nursery days: a rather strong testimony to the cyclical life pattern of the "sans teeth" Shakespeare variety and also a cry for help to make elderly activity not so obviously "time-fillers" till death. Old age seems to have become a nuisance to get through; indeed more than half of the elderly are on anti-depressants: a "disturbing statistic," one social worker told me, off the record: "as if the sadness of aging were a disease."

(A question: why not have activity that matters--cards to prisoners on death row, or teaching the alphabet to children--that might give the elderly a sense of purpose?)

Now that's the situation for the "normal" elderly. However, if your parent has some memory loss--i.e. can't remember what city they are in, or what happened yesterday (minor crimes in the scheme of things)--they have no choice but to be locked up.

Even in the fanciest of fancy Assisted Living Units--like one I saw with slick silver salt shakers, state-of-the-art elevators and a door-alarm system disguised behind paneled walls, as well as a pristine health spa with fluffy white towels, reminiscent of five star hotels--the "forgetful" are not allowed outside the bounds of their "ward", unless they ask permission.

This means that for the rest of their lives, they will live on one floor, pacing between lounge, dining area and bedroom, which in some of these units includes piped in music that follows you from wall to wall. Fine for them, you might think, but would you want that for yourself?

Conversation will consist eternally of banter with fellow residents and aids, unless one believes in an afterlife, or if relatives visit.

No one calls these long hallways of single rooms or apartments (rare, but possible in the upper-scale residences) "wards", as if the word is too reminiscent of a mental institution, but what else are these, even at $200,000 a year? I visited 16 institutions from New York to Washington DC ranging from the nonprofit homes to chain Assisted Living "hotels, (started by Marriott, etc.) My recommendation is for the nonprofits, where the sugary marketing to the "insipid" elderly is missing, and the profits go back to the elderly. Unfortunately, there are too few of these. NO MATTER WHERE, whenever I would ask to see the "outdoors" for these elderly, I either saw an enclosed concrete courtyard, thirty square feet in circumference, or a "garden path" around the building, which the director would invariably claim was "very extensive."

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"How extensive?" I said, thinking of my mother who was quite young for the situation and liked to walk five miles a day.

"Oh it takes at least five minutes to walk!"

I sought the alternative homes as well: bed-and-breakfasts where Alzheimers' patients sweetly dozed in front of a television as well as spiffy nonprofit nursing homes started by philanthropists.

Locked in, locked in, locked in.

Now I am told that the children of elderly parents are actually relieved that their parents are locked up: "It makes them safe." "We don't have to worry about them."

Still, I would hope there would be some alternative to imprisonment, segregation, and institutionalization that would also make the elderly safe.

I turned to a talented young aid from Ghana.

"What do you do with the 'confused' in Ghana?" I asked, as we drove down the beltway.

"They walk in the streets," he said.

That sounded a BIT better until he added that they are considered "bewitched", victims of "black magic."

The question is--and I welcome (beg for!) responses--are there any alternatives in our own urbanized, mobile, liability-prone, family-dispersive modern societies to the codified mechanized institutions I saw?

For example: perhaps a place that, unlike a high-profile Alzheimers' chain home I visited, would not tell me that the rooms are purposefully the size of minuscule cells so as to encourage the residents to be out in social areas, a choice based on scientific studies? (Half my friends are scientists, so I am used to ear-curdling when "science" is cited).

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In a utopia, I myself could imagine an elderly residence for the early cases of dementia (those that still walk and talk, with "high functionality") that has ample and safely fenced grounds that EQUAL the size of the indoors. Or--is it too much to envision?--a village of multiple buildings that simulates a real community, where elderly and young mix. The problem I saw with the current situation is that ANY degree of dementia--from getting confused about Monday or Tuesday to not recognizing your spouse--entitles you to be behind doors with complicated codes (that interestingly enough, the "normal" directors all seemed to have difficulty remembering), and "mixing" is null.

Indeed, only 5 percent of the institutions I visited allowed "mixing": i.e. that the senile could freely wander to other floors of the "independents" or even eat dinner together--a rather humane set of affairs, I thought, until one director of a nursing home imparted, with a bitter look: "The 'normal' are worse than the senile: so cruel, selfish, egotistical--full of 'me', 'me', 'me'--and they torment the Alzheimer's patients like bullies in a school yard."

(This counterbalanced a young social worker's more eager assessment: "I love working with the elderly--all of them--because they are so gentle and have much to teach me.")

Nonetheless, in my visits to these "wards," I must say there were many inspiring human moments that made the whole thing tolerable.

A beaming, happy woman dipped her napkin repeatedly in her kool-aid.

"Why are you doing that?" I asked, as the napkin went down for the tenth time.

"I like to dip!" she said. "And this is what I found to dip!"

"What about those cookies?" I queried, pointing at these rounded sugary wafers by her right hand.

"Oh! I never thought about them!"

And then there was the charm of seeing my own mother turn to a gentleman wearing a sharp black cap, who had been staring fixedly and vacantly into nowhere, in our general direction, for the last 4 hours.

"Sir, sir," she asked, sweetly. "Why on earth are you looking at me like that? Please do tell!"

And then there is the children-bonding. Much like parents bond with the fellow parents of their children at the local schools, children visiting Assisted Living wards turn for relief to fellow other children.

One man and I sat on the hood of his mini-cooper and talked--with great expression-- about his father.

"Does he converse much with the fellow inmates?" I said.

"Oh--he does not speak at all. Hasn't for four years." A classical music buff, his father had sung his last aria in 2002--and wouldn't recognize his son if he passed him in the hall.

But still his son visited every week.

So there is a human element to these residences--and the nurses, doctors and staff, I must say, are giving it their cheerful best, very dedicated to caring for each, encouraging them to go to the sing-alongs and "reminiscence" hours or "relaxed exercise in a chair" morning session. It is also tender to learn tidbits from the staff, such as the fact that the preponderance of stuffed animals I saw (teddy bears abounded) was not an anomaly but a cherished phenomenon among the elderly.

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Still, the occasional human element does not make up, I think, for the fact that I believe we could be a little more creative--beyond kindergarten "activities", locked-up-syndrome and segregation--with what it means to be "human" and old.


an interesting alternative voice: http://changingaging.org/