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...

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@pamela78

I can relate to all of the above and I have a question. There's an elephant in our house. It takes up a lot of space but my husband with dementia and I ignore it. He searches for lost words and I supply them. He repeats the same stories endlessly. He depends on me for more and more things: making doctors' appointments, driving him to those appointments, telling it's okay when he informs me he's going outside for the hundredth time in an hour. (An exaggeration but not much.) My question is this: Should I bring up the subject of dementia with him? Should we have a conversation about what's happening and what's going to happen? I've been diagnosed with an aortic aneurysm and am now worried that I might not outlive him, which would be unfortunate to say the least. We're each other's power of attorney and I would like to name someone else to be mine or to take his place when he's truly incompetent to make decisions. I don't want to hurt his feelings or frighten him, but ignoring this elephant is not helping. I want to reassure him that I'll be with him through whatever comes but doing that would mean acknowledging something I'm not sure he's really accepted. He's seeing a neurologist on Friday and I'd like to talk to the doctor about this but hesitate to ask for some time alone with her. I think my husband would feel bad if I did that. How have others handled this? I'd appreciate any advice.

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Hi @pamela78, my heart goes out to you. This is probably one of the most difficult changes in your relationship with your husband that you will have to manage and navigate.
I was in denial about my husband's condition for a while, but knew I would have to face it. It's best to tackle it head on. It's heartbreaking, but you know what's best for the two of you, and you have the ability to implement a plan.
Fortunately, my husband was receptive to my informing his doctor of his memory and other deficits, having neurological testing, etc. He gave up driving and management of our finances easily when it was time.
I had open heart surgery around the time he was diagnosed with Alzheimer's, returned home and resumed caregiving duties. At the time, he was able to manage staying at a hotel near the hospital and taking a cab to see me everyday. I was in for two weeks with complications.
Would you consider giving the neurologist a heads up about the changes in your husband's behavior, functioning, etc. before the appointment? Can you send the doctor an email or have a phone conversation?
Also, request referral to a social worker or geriatrician who can map out what you need to do, as you do need to plan for both your futures.
I wish you the best.

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@elm123

My husband cleans up the kitchen after dinner and he does a great job- but he puts all the dishes away in different places all the time. At first it drove me crazy but now I just laugh and am thankful he can still do it. I usually cook dinner but the other night he decided to make spaghetti but when we sat down to eat dinner , the spaghetti sauce was cold - he forgot to turn the burner on and didn’t realize it wasn’t hot! Though I feel like crying that this is happening to my wonderful husband - I realize it’s better to see the humor than get mad. It’s not always easy though.

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Hi @elm123, my husband does the exact same thing! I gave up telling him the proper places to put things because he never remembers anyway so what's the point? Now I just go into the pantry, find all the things he's misplaced, and put them away.
I'm thankful he can help me by doing the dishes and I tell him so.
You're right: humor helps, and I often joke with my husband. It's good to know that he gets the humor in my absurd jokes and comments.

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There are so many things that don't make sense. My wife still likes to do this dishes by hand; I fix all the meals. On one occasion she broke a glass making a trip to the ER necessary for stitches. If I don't dry and put away the dishes, she puts them away in unusual places. She recently started drying the pans by putting them on the stove and turning the burner on high. Then forgetting. Recently she was viewing a FB video clip on her cell phone, which she mostly doesn't know how to use for anything else, and she watched a clip that was on a 20 second repeat loop, for an hour and a half. I asked her why she was watching the same thing over and over(the audio was very irritating) and she insisted she wasn't. Eventually the phone ran out of juice and had to be recharged. And she still insists that a neighbor stole their giant lawn roosters from us. They are quite ugly and we never had such things on our lawn. I catch her giving the dog bits of chocolate and when I tell her that will make him sick, she denies that she did it. Very frustrating.

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@tsc

Hi @pamela78, my heart goes out to you. This is probably one of the most difficult changes in your relationship with your husband that you will have to manage and navigate.
I was in denial about my husband's condition for a while, but knew I would have to face it. It's best to tackle it head on. It's heartbreaking, but you know what's best for the two of you, and you have the ability to implement a plan.
Fortunately, my husband was receptive to my informing his doctor of his memory and other deficits, having neurological testing, etc. He gave up driving and management of our finances easily when it was time.
I had open heart surgery around the time he was diagnosed with Alzheimer's, returned home and resumed caregiving duties. At the time, he was able to manage staying at a hotel near the hospital and taking a cab to see me everyday. I was in for two weeks with complications.
Would you consider giving the neurologist a heads up about the changes in your husband's behavior, functioning, etc. before the appointment? Can you send the doctor an email or have a phone conversation?
Also, request referral to a social worker or geriatrician who can map out what you need to do, as you do need to plan for both your futures.
I wish you the best.

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Thank you @tsc. I appreciate the advice and the encouragement. My husband isn't terribly impaired yet; he keeps track of our money and his medications, does the laundry, unloads the dishwasher, and still drives. It's this in-between stage that I find especially difficult, when he's still with it enough to live pretty normally but obviously declining. In a way, I wonder if it will be easier when he's more impaired and there's no question of his making decisions. I know there's no solution, just finding ways to manage. It must have been so difficult for you to have open-heart surgery and your husband's Alzheimer's diagnosis at the same time. I hear 'ya.

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@chris20

There are so many things that don't make sense. My wife still likes to do this dishes by hand; I fix all the meals. On one occasion she broke a glass making a trip to the ER necessary for stitches. If I don't dry and put away the dishes, she puts them away in unusual places. She recently started drying the pans by putting them on the stove and turning the burner on high. Then forgetting. Recently she was viewing a FB video clip on her cell phone, which she mostly doesn't know how to use for anything else, and she watched a clip that was on a 20 second repeat loop, for an hour and a half. I asked her why she was watching the same thing over and over(the audio was very irritating) and she insisted she wasn't. Eventually the phone ran out of juice and had to be recharged. And she still insists that a neighbor stole their giant lawn roosters from us. They are quite ugly and we never had such things on our lawn. I catch her giving the dog bits of chocolate and when I tell her that will make him sick, she denies that she did it. Very frustrating.

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Oh, dear. These behaviors are very, very challenging. How in the world are we all going to get through this and still have some quality in our own lives? That sounds harsh, I know, but I feel I've been given an indeterminate sentence along with my husband. I know I won't get my husband back the way he used to be, but I'd like to feel some of the freedom I used to have. How does one adjust to being a caretaker and still have a life of our own?

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@pamela78

Thank you @tsc. I appreciate the advice and the encouragement. My husband isn't terribly impaired yet; he keeps track of our money and his medications, does the laundry, unloads the dishwasher, and still drives. It's this in-between stage that I find especially difficult, when he's still with it enough to live pretty normally but obviously declining. In a way, I wonder if it will be easier when he's more impaired and there's no question of his making decisions. I know there's no solution, just finding ways to manage. It must have been so difficult for you to have open-heart surgery and your husband's Alzheimer's diagnosis at the same time. I hear 'ya.

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HI @pamela78, since your husband is in the early stages there are some new drugs that can slow down the progression of Alzheimer's, I believe. You can ask the neurologist and also visit the Alzheimer's Association. A good search engine to put the question to is perplexity.ai
My husband was diagnosed as moderate. He took donepezil for a couple of years, but now takes an antidepressant.

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@tsc

HI @pamela78, since your husband is in the early stages there are some new drugs that can slow down the progression of Alzheimer's, I believe. You can ask the neurologist and also visit the Alzheimer's Association. A good search engine to put the question to is perplexity.ai
My husband was diagnosed as moderate. He took donepezil for a couple of years, but now takes an antidepressant.

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Thank you. I'll add this to my questions for the neurologist.

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We tried doneprazil for a while. It made my wife very drousy, sleeping sometimes 18-20 hrs a day. She is on nuplazid now. It seems to help with hallucinatons and dilusions, but very expensive.

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@pamela78

My husband is taking something too, perhaps Aricept, and it doesn't seem to be doing anything. I think the doctor prescribed it so we'd feel like we're doing something. My husband did fairly well on the memory test a year ago, but I knew at the time that wasn't the whole picture. In these circumstances I believe a neurologist should talk to the relevant caregiver or family member privately. There are things I want to say but not in front of my husband. I'm going to try to send some information to the doctor before his appointment on Friday. It will help me just to write it all down. Yes, this group is a lifeline. I'm also in the aortic aneurysm support group. "When trouble comes, it comes not as single spies but in battalions."

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I agree - this support group is a major lifeline for me as well. My Mom’s neurologist is useless. He prescribed Donepezil (aka Aricept) and increased her from 5 mg to 10 mg with no explanation. Canceling the last appointment, the next available was not until 2 months later. Obviously waste of time, no urgency, no explanation- he’s just collecting office appointment fees at this point. Am I missing something here?

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@lmr23

I agree - this support group is a major lifeline for me as well. My Mom’s neurologist is useless. He prescribed Donepezil (aka Aricept) and increased her from 5 mg to 10 mg with no explanation. Canceling the last appointment, the next available was not until 2 months later. Obviously waste of time, no urgency, no explanation- he’s just collecting office appointment fees at this point. Am I missing something here?

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My best friend's late husband had epilepsy and was treated by neurologists who prescribed drugs that pushed him into psychosis. He was overmedicated and turned into a different person. My husband has an initial appointment with a neurologist on Friday. Believe me, I'll be on the lookout for anything that seems rushed or slipshod. My friend recommended this doctor as better than most in our area, so I'm hopeful. If I were in your shoes, I'd find another doctor. Like cats and humans, all doctors are not the same.

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