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Both Sides of the Fence

A Tosa resident since 1991, Christine walks the dog, cooks but avoids housework, writes and reads, and enjoys the company of friends and strangers. Her job takes her around the state, learning about people's health. A Quaker (no, they don't wear blue hats or sell oatmeal or motor oil), she has been known to stand on both sides of the political and philosophic fence at the same time, which is very uncomfortable when you think about it. She writes about pretty much whatever stops in to visit her busy mind at the moment. One reader described her as "incredibly opinionated but not judgmental." That sounds like a good thing to strive for!

How to make people crazier

Age, illusions, war, economy


I had entered through the front door not but thirty minutes earlier.  Preparing to exit I was certain I had returned to the same place.  There was the same gas fireplace, the same television and the same bookcases.  There were mostly the same residents sitting there too.

I could see the great outdoors through the windows.

Pausing for a second or two I'm thinking - where the heck did the door go?


I can't get this out of my mind: blogger Tom Gaertner's experience with his father's new assisted living environment. The older gentleman had moved because it was no longer safe for him to live alone. He'd taken up "exit seeking behavior," also called "elopement" or wandering, which gets you in trouble in northern winters, especially if you live on a highway.

An aide piped-up – Son; it’s directly in front of you.  Painted to match the bookcases.  See it?

Aha!  A secret passage through the bookcase.  I get it.
 

But I don't.

Imagine yourself confused and frightened, compelled by something you don't understand to keep moving, to get away. Then you find yourself in a room that defies the rules of the universe, or at least architecture, as you have known them throughout your entire conscious life

A room with no exit. Jean Sartre, the famous French existentialist, wrote a play about that. No Exit from a  room with no doors -- and no windows, no mirrors, and lights that are never turned off -- was hell, and the people who occupied the space each other's unwitting tormentors.

No one knows why some people with dementia wander. The responses range from medication to using trompe l'oeil, or fool-the-eye artistic deception, to hide the exits. According to one respected medical journal, "visual agnosia, the inability to interpret what the eye sees, may be utilized as a tool in managing wandering behavior of Alzheimer's patients."

Something about that's not right. I asked a friend, Steph Kilen, about the practice. She works with Action Pact, a Washington Heights-based business that creates culture change in institutions that house and care for older people. The idea is to create real homes.

Steph said:

There are so many things about the institutional model that make people crazier. So many things are so unfamiliar/unnatural and un-normal that a lot of the natural cues are missing and it is harder for people to figure out what to do. Hiding things from people (even, having the kitchen "hidden") is really confusing. How can you settle down and want to stay anywhere (in a long-term sense, but also in regards to dementia-type "wandering") when a place doesn't seem like any place that you have ever lived?

You don't have to have to move into a secure facility to feel the anxiety of being in an institutional model room with no exit. People far smarter than I have wondered whether Afghanistan is a dilemma with no exit. Or whether there's any exit from saving financial giants that are too big to fail, and grow larger as we feed them.

I don't know the answers. But I do know that if you keep telling people the reality of their experience isn't true, if you keep replacing doors and windows with pictures of them, they aren't going to feel any better about being there.

They'll just keep looking for the crack to open the door. Sometimes, trying to get out of there is the only thing that makes sense.

Note: Yes, I know "crazy" is an inappropriate term to use for dementia. But it's not for politics, and I'm using it here because I think you know what I'm talking about.
 

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  1. The idea of co-housing is appealing. There are plenty of models for communities that developed around special needs like those of people who need places to live as they recover from substance abuse. The Oxford House model would be an example. I'd recommend the book Havens: stories of true community healing by Leonard Jason and Martin Perdoux as a resource. It focuses on healing because the authors are therapists, but it also talks about communities developed by people who need mutual support due to aging. I've thought about using my house as the focal point of such a community, though it would need some modifications to make it more accessible and I'd have to develop my cavernous attic into living space.
  2. My mother lives in the other unit in the duplex my wife and I own - for six months, anyway. The other six months (the colder ones) she lives in a warmer climate with my sister's family. We are happy to have her nearby. Should she need constant medical care, though, she would almost certainly insist on institutional care, and we would oblige.
  3. Tine, I do agree that there are some questionable institutional practices. Largely they have made some ground.

    I attended Froedert's Dementia Basics Workshop and one of the most poignant moments was during a film from the 50s where they showed a man with dementia asking for his wife. Each time the care giver said she is dead and he needs to "move on". Because he could not comprehend this, each and every day that he "learned" that she died, he experienced the pain of "just discovering her death". He lived in perpetual sadness. Today, we know to redirect that question and ask him to share his most favorite memories of his wife...
  4. TosaTownie: I have a parent at Harwood who chose the facility as symbolism to her independence. She did not want to live with her children that she thought would need to sacrifice the raising of their own young children and quit their jobs to take of her health needs-- she has a progressive form of Alzheimer's. I would think that you find this decision very pro-american: Government is not paying for her housing and her children are not dependent on government sustenance. her children , on the other hand, can provide the quality of care to their own children as was afforded them.
  5. Outsider, the Boomers TT loves to hate are doing some interesting things to address our own needs for community AND independence. Some people are buying condos near each other. Others are creating cohousing or talking about buying 6- or 8-plexes together. That way, we'd each have our own place but have the easy company (and help) of friends nearby. At first, it would be for more fun. But later, it might be easier (and more economical) to bring in and share help. Not only single people but couples are doing this.
  6. It's a good thing that we are not accountable to one another for our decisions regarding the care of our family members. I will stand before God one day and be satisfied that I did the right thing for my husband's father by placing him at St. Camillus Terrace. His care was superb and he was happy there. My husband and his siblings cooperated by making sure one of them was there each day for one meal with him. Like Tosaoutsider, he did not want to live with any of us. My mother, on the other hand, would love to be with us as long as she was not a burden to us and we would love to have her. She is 81 and still in her own place. Make the best individual decision for your family.
  7. I'm approaching old age and I'm already losing my independence due to the effects of a disease that has led to chronic disability. The last thing I want is to live with my kids once I reach the point at which I'll need assistance to feed, dress, and bathe myself and keep my home clean. The prospect horrifies me. That's not the kind of relationship I want with them. It's not how I want them to remember me. My kids are kind and compassionate and I'm sure they'll want to help me as I grow older, but the only way I'd accept an invitation to move in with one of them would be if their home was equipped with a separate apartment and I had the means to pay someone for my personal care. I suspect that there are a lot of older people who feel the same way I do.
  8. How old ARE you, TT? Just wondering. Anyway, like Tom's dad, my mom chose to live where she did. And if you think having a beloved elder living in ANY situation is "out of sight, out of mind," well, you haven't been there yet. Daily visits are more the norm than not for the people I know.
  9. "I don't understand why more children of ageing parents don't have them move into thier own homes, as opposed to shipping them off to some home like facade of an institution?"

    Good point.

    Personally-speaking, my father never wanted to live with either of his sons. He wanted to maintain his independence.

    Now he's made the leap to complete dependence.

    It's really not a bad place considering. Sort of like a group home.
  10. Well Tine, I disagree. What it sounds to me is a bunch of rationalization of how you(and your generation) feel in putting mom/dad out of sight...out of mind.

    Nonsense, poppycock! Rationalization is a strong desire that is for sure.
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