1. < Caregivers: Dementia

I don't know why I did that

Posted by joedeb @joedeb, Feb 8 9:31am

Yesterday while we were in the kitchen, with me doing some cleanup, my wife just turned a burner on on the stove. Nothing on the burner. My reaction was much like you would react to a 3 yr old who did that. Later, I asked her why she did that. Her reply was telling for me. She said "I don't know why I did that" I realized that I can't treat her like a 3 yr old and yell at her to punish her like some pavlovian dog exercise. She's a grown adult. That response only offends her. That's the thing about dementia I'm learning. She did it but doesn't know why. It's frustrating and scary. Two days ago I notices holes in the turtleneck shirt she had on. She never liked this shirt because it was tight over her head. I found a pair of scissors on the laundry counter with chunks of the shirt next to it. She just started cuttin holes in the shirt. She didn't know why she did that. My sister in law, in assisted living with long haul parkinsons, just takes off out of her apartment down the haul and falls. The staff have threatened her telling her she has to be in a wheel chair at all times or they are moving her to memory care. That didn't work.
She is moving into memory care next tuesday. Now they have a full time person with her to protect her. She just doesn't know why she doesn't remember to get in the wheel chair despite constant reminders.
When I talked to my wife this morning and told her I realized she was not able to know why she turned on the burner, she teared up. I think everyone, me included, has done stupid things that later you say to yourself "Why did I do that?" With that there is some self awareness and self examination. With dementia, the self awareness and examination are gone. It's like a child before the sense of reason or learning takes hold. Such a weird thing to deal with...

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celia16 | @celia16 | 1 day ago
In reply to @elliottw "I guess I was fortunate that I lived with my grandparents when I was a senior..." + (show)
@elliottw

I guess I was fortunate that I lived with my grandparents when I was a senior in high school (50-years ago). They were both in their late 70's and were in their routine, told the same stories over and over, and there was no reason to challenge them or correct them. They loved me and I loved them. They appreciated that I did 'chores' for them. And didn't seem to upset when I'd come home at 2am on a Saturday night.

My wife was a valedictorian in high school, finished college on a work scholarship in three years, and had a 140+ IQ, and still is pretty fluent in Mandarin Chinese, French, and Spanish. A few years ago when I was talking to my physician and stressed out, not knowing the real reason, he asked how 'Deb was doing?' I replied, "Not good, its like she went from a 140 IQ to 100." (I didn't tell him that she can't 'learn' to turn on the TV, operate a computer, doesn't know what day or year it is, doesn't remember that we have been together for 20-years, and a dozen other mis-memory things she does). He instantly said, "Sounds like Frontotemporal dementia (FTD)."

But once I realized I was first, 'a caregiver' and adopted the role of living with a 'grand-parent,' a lot of the stress and 'wanting her to understand' went away. I always check stove burners and locks on the front door, and am always turning off lights. One benefit is I now have "One hour Martinizing" (the Washing Machine and Dryer is running most of the day). It is lonely and I'm working on that.

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Does she have FTD?

REPLY
pamela78 | @pamela78 | 1 day ago
In reply to @elliottw "I guess I was fortunate that I lived with my grandparents when I was a senior..." + (show)
@elliottw

I guess I was fortunate that I lived with my grandparents when I was a senior in high school (50-years ago). They were both in their late 70's and were in their routine, told the same stories over and over, and there was no reason to challenge them or correct them. They loved me and I loved them. They appreciated that I did 'chores' for them. And didn't seem to upset when I'd come home at 2am on a Saturday night.

My wife was a valedictorian in high school, finished college on a work scholarship in three years, and had a 140+ IQ, and still is pretty fluent in Mandarin Chinese, French, and Spanish. A few years ago when I was talking to my physician and stressed out, not knowing the real reason, he asked how 'Deb was doing?' I replied, "Not good, its like she went from a 140 IQ to 100." (I didn't tell him that she can't 'learn' to turn on the TV, operate a computer, doesn't know what day or year it is, doesn't remember that we have been together for 20-years, and a dozen other mis-memory things she does). He instantly said, "Sounds like Frontotemporal dementia (FTD)."

But once I realized I was first, 'a caregiver' and adopted the role of living with a 'grand-parent,' a lot of the stress and 'wanting her to understand' went away. I always check stove burners and locks on the front door, and am always turning off lights. One benefit is I now have "One hour Martinizing" (the Washing Machine and Dryer is running most of the day). It is lonely and I'm working on that.

Jump to this post

My husband (Phi Beta Kappa graduate of Stanford) is sliding down that slope with only one end and, as his wife, I find myself lonely and stressed, which is not good for me. I was recently diagnosed with an aortic aneurysm. I always thought I'd outlive my husband and be able to care for him indefinitely, but my diagnosis throws a whole new light on things. Getting organized and setting things up for the future is challenging, especially as he doesn't realize that there's anything wrong with him. It's very lonely when the person you married has been replaced by a simulacrum. I know so many folks who are in a similar situation with no help to speak of. This is a crisis, much like the childcare crisis working mothers often face. Attention needs to be paid.

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joedeb | @joedeb | 1 day ago

You are so right. Resources for child care and elder care will be hard for even the most socially conscious leaders. But that would do more for life in America than almost everything else.
My grandson is reading Macbeth in high school lit class. Ambitious, I think. I didn't read anything that heavy in 16 years of school. Of course I was doing quantum mechanics instead. Macbeth now is sort of fitting for our age.
I just saw a study showing visual effects for people with cog decline. Bright colors stimulate regions in the brain. So we went shopping yesterday for anything bright and colorful.
I am finally fully free from my job and would like to travel to Arizona to a family house next week but I am having reservations. I know it will be more work, but I feel like I have to do it just to see what we can and can't do.
Hang in there....

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steilacoomcaregiver | @steilacoomcaregiver | 1 day ago

You seem to have a very open mind about her unexplained behavior. I admire your compassion and understanding for her.

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