I couldn't help but notice that the couple featured in the article were so early in the ALZ journey that they had barely scratched the surface - it's easy to shrug and laugh when someone mis-remembers minor details, but when they've reached the stage where they are becoming a danger to themselves (or others), when they become moody, sundown, need help with ADLs etc it's a whole different ball game. Imagine this scenario "Oh honey, you and Ollie really need to stop flushing your Depends down the toilet, ahh ha ha ha!". Get real. And I cringed when I read the bit about the "elder clowns" - I'm sure it was the individual attention by trained people that had the positive effects as much as the actual humour involved.
It was striking how many who commented on the article really took her to task. One noted he hoped the author took the time to read the comments posted.
I saw the article and couldn’t bring myself to read it. Not much Joy happening here lately. I’d like that writer to spend a day with me. Or a few hours on this forum.
re: "Some Alzheimer's sufferors do get violent but I think it might be due to the efforts to resist the disease."
There is no doubt that many of the distressing behaviours that accompany dementia come from an unmet need and could be corrected if someone would take the time to address that, but unfortunately some stuff just happens because the brain is broken. I recently read the story of a woman whose father was murdered in his own bed by another resident who was wandering the halls at night - what unmet need could possibly have driven that? Or what about all the stories about men and women who turn into sex fiends and proposition (and more) everyone they come into contact with... should we be handing out dildos and bringing in prostitutes to fulfill their unmet needs?
To me this is a lot like the conversations you get from those smug parents who give advice about the proper way to raise kids, there is no one size fits all.
There are sometimes funny moments, but mostly there is hidden crying and working your butt off and doing all you can possibly do. There are the days that you are yelled at or forgotten. The days when you think your body can’t possibly handle doing another position change, but it is time. Then there are the days you have cleaned up the diarrhea for the 4th time and the catheter starts leaking and all the while a family member who has never helped even the tiniest bit is being spoken of as “the angel that takes care of me.” This is not a humorous, let’s just make a joke of the whole thing disease. Whoever wrote it has never spent their days working with someone. I can’t imagine it getting worse, but we are only 1 year 4 months in. I am legitimately scared.
I finally had the strength to read it. I thought it was mainly fluff and a 20k foot view of the disease in its very earliest form. There was one thing that I thought I’d try however is answering in the affirmative instead of the negative. “Yes, you can take a nap, let’s do X first”, instead of “No, you can’t take a nap yet”, or whatever. I’m going to start saying a lot more “yes” and see if it helps both our dispositions.
I never had one single day of any of this with the wife's form of dementia. It went from her getting lost on her way home to her not knowing how to use the proper word for one of her favorite places. And it is at the point now that she cannot construct a sentence of her own. Along with all of the other things we know of That happens.Maybe if we had had some time to grow into her dementia we might have had some memories and some fun but never anything to laugh at or about.
Some of us old sailors used to have a saying for expert. Expert is a compound type of word. EX is something or someone that used to be, and spert is a slow drip under pressure.
I couldn't read after the "clown" thing. I saw no Joy in being "it". I saw no Joy when Mom got paranoid. I saw no Joy watching her decline month after month. I watched a woman who did for others without question, not have one visitor but me and mine. No, she didn't realize it but I did. Two brother's that didn't see her more than once or twice a year. Hey, I understand it was hard for them to see her like that but I watched my Mother die day by day for almost 3 years. I really am trying to push those memories back and bring the happy ones front and center. Its hard.
I hear you 100%. Been trying like h*ll to force my older good memories to the surface .... and push down my despair-&-anxiety-filled memories of Mom’s last XX years. It’s not really working. I keep trying, tho.
The nyt used to run a column called the new old age. I found much of it extremely helpful. Those papers who present things we don't agree with, often have worthwhile info. I take it in that vein. Ymmv.
There are so many ways this disease initially presents itself! Perhaps IF your loved one begins the journey slowly, is diagnosed quickly & correctly & hasn't already irrevocably broken all bonds with friends & family, MAYBE you can find joy & fun & develop a go with the flow mentality.
Unfortunately, it seems that many (most) of us are waist deep in the weeds & swamp of "what the #$^& is happening" before there is a diagnosis. Joy & fun are years in the rearview mirror by then!
This is true. In hindsight I now see the signs but back then I just got frustrated. The ability to reason was the first thing. Couldn't understand how an intelligent person took what a 18 yr old gson told her over her 58 yr old daughter. And he has the neurological problem!
https://www.washingtonpost.com/local/social-issues/changing-the-tragedy-narrative-why-a-growing-camp-is-promoting-a-joyful-approach-to-alzheimers/2019/02/21/2c4ed4f0-2244-11e9-81fd-b7b05d5bed90_story.html?outputType=comment&utm_term=.bfe93558e4ce
And I cringed when I read the bit about the "elder clowns" - I'm sure it was the individual attention by trained people that had the positive effects as much as the actual humour involved.
Oh, poo, I forgot to clean it up!
"Some Alzheimer's sufferors do get violent but I think it might be due to the efforts to resist the disease."
This is so stupid I can hardly believe you wrote it.
There is no doubt that many of the distressing behaviours that accompany dementia come from an unmet need and could be corrected if someone would take the time to address that, but unfortunately some stuff just happens because the brain is broken. I recently read the story of a woman whose father was murdered in his own bed by another resident who was wandering the halls at night - what unmet need could possibly have driven that? Or what about all the stories about men and women who turn into sex fiends and proposition (and more) everyone they come into contact with... should we be handing out dildos and bringing in prostitutes to fulfill their unmet needs?
To me this is a lot like the conversations you get from those smug parents who give advice about the proper way to raise kids, there is no one size fits all.
That happens.Maybe if we had had some time to grow into her dementia we might have had some memories and some fun but never anything to laugh at or about.
Some of us old sailors used to have a saying for expert.
Expert is a compound type of word. EX is something or someone that used to be,
and spert is a slow drip under pressure.
MTCW
Unfortunately, it seems that many (most) of us are waist deep in the weeds & swamp of "what the #$^& is happening" before there is a diagnosis. Joy & fun are years in the rearview mirror by then!