How to make people crazier

Tine- Love your thoughtful and sensitive posts.
I know someone caring for his mother with Alzheimers. She is still able to live in an apt. with assisted living care. The problem with the type of care that would be more 'humane' is that it would probably cost a lot more. Having the exits easy to find and the kitchen available and fully functional would require more staffing to supervise those things. I believe that's why it won't change anytime soon.
I don't have a family member in this situation, but I'd like to think I'd have your caring and compassionate attitude toward the care of vulnerable people.

Since I started this topic - and you have continued it - I feel the need to chime-in.

Regarding the views of your friend Steph Kilen I would like to point out that she is unfamiliar with the specifics of my father’s circumstances – including the extraordinary efforts we have taken to allow him the dignity of remaining in an independent living environment.

For his own safety dad could no longer have his bathroom.

Or home.

A stove would be out of the question.

We have lifted heaven and earth (and countless caregivers) to accommodate his needs and he now lives in an appropriate environment.

Furthermore - I would like to bring-up the issue that nobody seems to want to tackle -

That being that there is no amount of money on earth that will reverse the outcome of his condition.

No mortal person lives forever.

Dad and I discussed this at length years ago. My brother and I are simply implementing the directives he so explicitly outlined not so long ago...

I'm sorry if I appeared to be criticizing your decision. That wasn't my intention. It's a hard thing when we must choose between safety and other qualities we hold dear. Of course he lives in an appropriate environment, and you chose well and lovingly for him.

But some of the choices made in this industry are problematic, and even though they work to solve one problem they can create other ones. This business of concealing doors, while useful and expedient, carries with it some other questions. I've seen people made more agitated by this approach. I don't know whether buzzers/alarms are "better". Haven't seen any studies that look not only at what keeps people safe but is also least disruptive to them.

In the best (and most expensive) of all worlds, there'd be plenty of people to watch the doors and people so no one would get lost, and wonderful safe places to "redirect" the wandering. Lacking that, we do the best we can.

Tine, You know I enjoy your ideas and the way you express them. Usually. It’s simple to agree that “it’s too bad we have to get old and die.” Or, more to the point, that “it’s too bad that our bodies and minds betray us so badly in the process of dying.” Right now, my siblings and I are paying my mother back for all the time and love she expended on us by going to great lengths to keep her “independent.” To keep her out of a much more cloistered “assisted” situation, it requires daily visitation, stockpiling Depends, bed changes, doing the laundry, medication diligence, spill clean-up . . . a thousand other things.

It’s worth it, but when it’s just too hard anymore, especially on my sisters, or too dangerous for my mom, we’ll probably move her to a place with fake doors. She’s enjoying her final years, more than many in her condition, because we were able to squeeze most of the furniture from her last house with my dad into the large-ish apartment, cover the walls with art and photos which give her failing memory that daily jump start it so badly needs, and fill the shelves with books that will nevermore be opened and nick-knacks, the origins of which are long lost to her.

When you advocate for the ideas of people like your friend Steph, who by your own words is implicitly critical of the care Swampy’s dad is receiving, all that comes to my mind is “the perfect is the enemy of the good.” The process of dying will never be perfect. The door hidden by fake bookshelves might help it to be good, though.

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? These people cared for you when you were little, they sacrificed so much and it seems that most baby boomers are concerned about their time and convenience as opposed to thier parents.....it gets me very angry how we treat our elderly.

Your children are grown and hopefully moved out, you ahve the spare bedroom, bring them home!!!

I agree with you to a degree, TT. Two generations back many families had an aging parent living with them, for better or worse. But, there was also usually a full-time homemaker on the scene then, and in most cases the kids all lived in the same area. In my personal case with my mom, we'd have to buy a different house because the remodeling would be so extensive to get a bedroom and full bath on the first floor.

"In my personal case with my mom, we'd have to buy a different house because the remodeling would be so extensive to get a bedroom and full bath on the first floor."

Not to get too personal or insult you, but so what? What do you think your parents did to make sure their home was right for you and your siblings? How many job offers did your father turn down due to travel so he could be home at night? There is always an excuse, its simply whether you want to do it really.

It's clear I've hit a sensitive spot.

I'm not arguing against the places that work with love and compassion to create good and safe places for us to live when we need help -- or even when we just prefer to live more closely among other people. Tom's father is fortunate to be in one of those places.

But I'm surprised at the strong response to support this one accommodation that I wanted to explore imaginatively, from the standpoint of "what would it be like for me." Isn't that a reasonable viewpoint to factor into the way we create our institutions, "what would this be like if I lived here?" That's not the final test, but surely it's one test to make.

The work of creating caring communities is an ongoing process. You don't make them better by not asking questions. Good facilities like the one Tom's father lives in constantly ask such questions.

I encourage you to look at the Action Pact website before you dismiss their approach on the basis of one quote out of context. St. John's Home is a pioneer in using some of the approaches Action Pact and a group called the Pioneer Network use in this work. There's a wonderful film, Almost Home, exploring how St. John's home approached the ongoing process of culture change (http://www.almosthomeoutreach.org/). It's old, but it helps you see how the process starts and continues.

It's nearly impossible to insult me . . .

But aren't you concerned about how readers perceive you when you take a tiny bit of personal information and extrapolate that you know anything about a situation at all?

Trust me, if I explained the situation to you fully, which I won't, you'd feel bad and be embarrassed by your presumption.

Although I might be overestimating you . . .

I cannot imagine any health situation outside of a hospice setting where the handwriting is pretty much on the wall that death is soon coming, that an elderly parent couldnt live at home. We can all find excuses in life, and I find that to be the test of character and devotion.

TT, most of the care older people get comes from relatives and neighbors, even today. But there are so many situations in which living in congregational settings is BETTER than living alone or even with family. My mom's time in an assisted living facility not only kept her more independent longer but led to her experiencing deep new friendships--the thing my mom was most gifted at--at the end of life. Even in a relative's home, older people can be more isolated. . .

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.

"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.

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.

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.

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.

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.

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.

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...

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.

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.