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I don't know why I did that
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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I do all of the cooking and my wife does the cleanup after dinner. She often washes items by hand, rather than put them in the dishwasher (which is what I would do). And she usually leaves greasy areas on pans and dishes. But she wants to "do her part" since I cook, and I think it important that I go along (but I could clean up in less than half the time it takes her). She is also very OCD and she has rearranged the utensil drawers (3 of them) multiple times (sometimes in the same week) and I never know where my favorite items are. She's also done the food pantry. I just have to let it go and not make an issue of it. She cannot help herself. None of this is easy. I have to keep reminding myself that I am the fortunate one (so far) because I still have (most of) my wits. I certainly wouldn't change places with her. I hurt for her.
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9 ReactionsPamela,
How long have you been seeing a neurologist? Has he taken the test showing MCI? That was my wifes signal. She forgets. I don't think it helps to remind them they have dementia or MCI. My wife doesn't like it. She is missing more words every day. You have the correct thinking imo. Have you checked out care facilties? That is one of the things we did. I know where I would like my wife to go when I can't take care of her anymore. My wife has always been a caring empathetic person and I do hurt her feelings if I tell her whats happening to her, so I tend not to. You're right to seek another person you trust for POA. I don't think one can do too much in that regard. Do you have children or close relatives that could do that?
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8 ReactionsI can understand your concern. Does your POA document have a listed alternate? Most do. If not, I’d get a new one promptly. Whether you share that with your husband is a personal choice.
I’ve heard it is thought that telling the patient one time is customary. After that, it’s probably not helpful. I’m no expert. They will likely forget it at some point, but that’s an individual thing and you should do what you feel comfortable with. My cousin was told once by the neurologist and we didn’t discuss it again except, I’d say no one has a perfect memory. No worries.
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2 ReactionsThanks. Our doctor has said the word "dementia" and referred my husband to a neurologist. Hubs keeps saying he doesn't know why he's going. He seems quite lucid in many respects but he's obviously not what he was. I'll try to speak with the neurologist on Monday.
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2 ReactionsHave they done tests, like vitamin deficiency tests? She also got an MRI….trying to confirm it wasn’t something fixable. After a few days, I don’t think my cousin had any memory of seeing the neurologist.
Wow…you are so brave. Others will have better advice than I, but could you contact the doctor’s office ahead of time by phone to express your concerns? It has also been suggested to me to write a note and slip it to the nurse at the beginning of your appointment for the doctor to read before she/he meets with the patient. I have had similar concerns about my husband’s upcoming appointment. And yes, add someone as POA if you can do it. Best wishes.
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3 ReactionsHello: the plan was for my husband and I to be each other's POA. When my husband's memory and other items started to take a hit, I changed my POA to be our daughter.
Can you write a letter or communicate to his doctor through the patient portal, or hand the letter to medical staff to give to his doctor, so you can communicate important info without your husband being present?
All the best, and so sorry about your own diagnosis. 🫂
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2 ReactionsThank you to everyone who wrote a response to this. Good advice and I'll take it.
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3 ReactionsYour description of the elephant in the room rings true to me as well. Slowly over the course of the last few years I have started doing everything - pay bills, medical appointments, even driving a lot more.
The suggestions given here for making sure you can speak to the neurologist alone are well worth trying. I now realize the importance of the doctor hearing about ALL the changes you’ve seen, not just relying on a memory test.
When we finally went to see a neurologist - he only spoke to my husband and, after several tests (MRI, bloodwork, etc.), gave my husband a prescription for Aricept, without giving us a diagnosis other than ‘short term memory loss’. My husband had very bad dreams on the drug, so he stopped taking the drug and now we are proceeding as if nothing is wrong!
I wish you and your husband all the best as I totally relate to what you are experiencing. Finding a therapist and this online chat has really helped me.
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7 ReactionsMy 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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