November 17, 2014 at 8:01 am #3210
Psychologist Donald Spence defines the concept of “narrative reality” as the ways in which stories and places help link the “true” world to one that a person is better able to understand, using storytelling as a vehicle to understand the truth—you’re in a place that’s holistically normal, you’re not lost, etc.
KSKD: They do this at a cost that is competitive with caring for parents at home, and seriously less than nursing homes typically cost here in the US.
Besides, I find this very human and compassionate. Wow.November 17, 2014 at 5:26 pm #3249
I find this a quite fascinating concept, not sure how it would work here with the high front end cost involved. After the initial capital involved with building the community, it seems that there would be a cost savings, BUT cost savings is not the main thing to look at here, the quality of life for these people facing the issues of dementia is the issue.
Unfortunately, in some cases today, what we do is nearly the equivalent of sending our elderly out on an ice floe to live a lousy “nursing home existence” until they die. In recent weeks, I have had personal experience visiting one of our church members (who has since died) in one of these “care centres,” not a pretty picture. There was no visible abuse, just that the environment was not conducive to rest or healing.
As the Baby Boomer generation ages, this is going to be a HUGE issue for us to deal with. Fortunately, my parents have remained fairly healthy into their retirement years (so have most of my aunts and uncles who are or who have lived well into their 80’s), my remaining living uncle (who was a gunner on a ship in the Pacific in WWII, now age 88) is still healthy enough to live at his home, alone.
Just a couple of questions:
Are we willing (and able) to fund a programme like this?
The idea seems ideal, but what have been the issues that the creators of this community faced or are facing?
I particularly was intrigued with the idea of setting up housing decorated like the time period in which the resident’s dementia began, attempting to present a seamless existence for the patient.
I admire the compassion involved in this concept, for sure.
Other thoughts?November 17, 2014 at 6:46 pm #3256
I sure wish we could fund this kind of thing. As a longer term way to handle aging, this approach seems well worth it.
Agreed on cost vs quality. I would have no problem funding on that basis. When it is well distributed, we would hardly feel the impact.
We cared for my wife’s parents for those exact reasons. Her mother in her later years loved to cook and talk with the kids, and I set her father up with various old tube radio gear he spent many years listening, talking on a CB, drinking wine, and carving sometimes awesome things out of wood. I had to help with that some, but seeing his face light up as he tuned far away places, or made som thing he wanted was very worth it.
I remain convinced being in a home would have shortened their lives and the quality could not even compare.
We do have adult living homes and they can work really well, though those are not typically used for age related care as much as they are MRDD care. My wife did this work, lovingly called them her “tards” and I saw a whole lot of good being done. Ane should anyone take the term tard wrong, let’s just say nobody messed with her tards and got away without a real lesson of some sort. They loved her as completely as anything can, and she would go to the mat for them on life quality issues too.
That matters. Most, if you ask me.November 17, 2014 at 7:20 pm #3258skepticalParticipant
“I remain convinced being in a home would have shortened their lives and the quality could not even compare.”
Keep in mind, though, people with dementia can be violent, demanding, aggravating, and dangerous to them selves and others who live with them.
Family caregivers get burned out and turn against the very people they love. Families get wrecked, careers ruined — you name it.
There’s no simple answer.November 17, 2014 at 7:26 pm #3260
It’s not like we have to put all of them in there. For those with dangerous conditions, it’s obvious more institutional type care is indicated, though not always something families can afford to do.
As for burnout, depends. IMHO, it’s best for everybody to sort this kind of thing out long before people get to a point of need. That’s precisely what the KSKD family will do.
Both my wife and I were raised to take care of our own, and we did that with few regrets. Sure, bad things can happen, but doing the work to minimize those isn’t hard, and there are options should it go bad.
Here’s the tough thing for me. I’ve never had a visit to anyone in any home that I really felt good about. I’m sure there are people who do have a good experience, though I’m also sure that has a lot to do with the size of their bank account as much as it does the overall quality of the home.
The McCall retirement community is just down the street from my place. It’s centered there with the McMinnimans (however you spell it), and has open grounds to walk, offers some pretty decent concerts in the fair weather months, and I do see families gathering and having a good time. Doesn’t look cheap, but it does look like people can have a good quality of life there.
Having this kind of thing as an option would be a fine addition to the options out there right now, that’s all.
If it’s harmful to others, quality of life may well be at issue and that’s just how it is. Where that’s not true, quality is worth doing the work to realize.
What I liked most is this effort recognizes that case and is maximizing it. I give ’em high marks precisely for the “no easy answers” reason. People need options and this appears to be a very good, high value option.
I also liked the idea that maybe actualizing how sick, or aged somebody is might not always be the best idea. Lots of compassion in that idea. On a very basic level, as beings, we desire a state of well being. A little theatre mixed with professionals making sure everything makes sense seems like it could do some people a lot of good. And they might even continue to do things others find valuable too. I like the thought processes overall.November 17, 2014 at 7:48 pm #3266
Missing, you mentioned MRDD homes, like the one your wife worked in many of them are run in a positively wonderful way. My wife’s stepbrother has lived on a working ranch for male adult MRDD individuals for the past 30 years. The ranch is owned by a very nice couple who took it over from the people who started it 40 years ago and have now retired. The ranch’s residents range from mild to medium cases of MRDD. (My wife’s stepbrother, I assume, has about an 11 year old mentality-physically he is 50.)
In addition to the farm chores that are assigned on the basis of each individual’s disabilities, there are many activities that are planned for them, outings every week and participation in the Special Olympics basketball tournament in Redding, CA every March. (Which is an absolute blast to for me and my wife to attend each year!)
In this environment they are not treated like patients or weirdos, they are treated like people, which most certainly improves their quality of life. Most of them don’t know that there is anything “wrong” with them, they are simply unique in their own way!November 17, 2014 at 8:05 pm #3270
Yeah, your last statement says it all. Totally agreed, and experiencing how that all worked really impacted me in positive ways back then.
And the truth is, they are just people. And despite the differences, want the same sorts of things any person wants, and they work in most of the same ways people work, needing what people need too.
What I saw was great personalities in most of them, and that is hard to see for many people who have not socialized well among MRDD people. Did me a lot of good for sure.
Movie night was often completely hilarious! The stuff they would say or ask about! Good times. Amazingly, and I’m a bit ashamed at adding “amazingly”, because I should have known better. But, I suppose I did get there too, so no worries now.November 18, 2014 at 6:09 am #3296
Most of them have quite interesting personalities, possibly because many of them don’t seem to be hung up by the same inhibitions that most of us gain by “maturity.” My wife’s stepbrother doesn’t mind letting us know what he thinks about something, for sure!
I haven’t been able to attend the ranch’s movie night, but my wife has, she can agree with you Missing, she mentioned that it was quite amusing. We are planning to spend a couple days at the ranch this spring, after the Special Olympics basketball tournament.November 18, 2014 at 8:41 am #3307
That rings true to me.
Yeah, movie night can be awesome. Ordinary people see a romance scene, but they might see comedy or a fight, for example. Sort of a little like Mystery Science Theater 3000. They make up the talk track, and I personally have seen movies in new ways.
Movies like “What’s Eating Gilbert Grape?” can be really profound experiences. “Retarded, but not stupid” kind of profound. Sometimes, they will identify with a character very deeply, saying things that make you think hard.
I never could know how it would go. Great stuff.
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