Loss of memory

H Mike

My wife was diagnosed with ALZ 2 years ago. She still cares for herself, dressing, bathing, preparing her meals, bathroom visits, works computer games and daily crossword puzzles. However, her memory is getting worse on a daily basis. She doesn't remember where items in the house go, even though they have been in the same location for decades. She doesn't remember friends/neighbor's names, even though she has known them for decades. She can't remember things mentioned/told her more for 3-5 minutes before forgetting them. After 59 years, I don't want to have her go into a long term facility, even though we have insurance that would cover it. I'm just curious how to deal with repeating things, over and over. Also how to control my temper. I'm not used to repeating myself. Any suggestions will be appreciated.

Denise1847

Hi Mike,

I am sorry about your wife. To help you deal with the repetitive questions and other patience-testing behaviors, I try to keep in mind that this is a brain disease and that they are not doing it to annoy us. My husband does all that you mentioned plus he hums all the time. He still remembers people, but I know that will be coming. The behaviors you see depend on the parts of the brain that are being affected.

Ed1937

Mike, welcome to the forum. Sorry we have another member needing it. But you found a good one to get support and understanding.

Have you totally accepted the fact that she has an incurable brain disease that is the cause of her actions? You have to keep reminding yourself of that, and I know that's not an easy task. It's something we just have to take control of, as hard as that may be. Sometimes it helps to just start a new discussion about what you're feeling, and you will almost always see that you are not alone with whatever it is.

Does it seem like her memory is suddenly getting worse? If so, it's time to have her checked for a UTI, and ask for a culture with it. UTIs can cause all kinds of things, and they can be present without showing any typical symptoms.

ButterflyWings

Mike - Yes. She is going to forget. Meaning that she will ask you the same question, or make the same comment repeatedly. It seems to be a super common problem. I remember the phase well, but don't remember how long it lasted for us. I think it has subsided mainly because DH can't communicate much any more which might be worse. I know that may be hard to imagine at 2 years on this journey and at your wits end, but I am kind of wishing DH would launch into one of his endless monologues or loops where the same question comes up over and over. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5768244/#:~:text=Repetitive%20questioning%20is%20one%20of,%2C%20caregivers%2C%20and%20even%20visitors.

It has been very important for me to learn about the brain damage that my LO cannot help, so I can make sure to provide the compassionate care he deserves. Every stage has its quirks and at 6E (the last stop, before the final 7th Stage) I have experienced a lot of what Alz hurls at us.

Most, or all of us here, have had to learn how to do, or stop doing things that have been part of our personality or habits forever. This is the only realistic way to adjust to the curve balls that dementia throws at our poor spouses, who no longer are in control of their own faculties or behavior. Sobering and tragically sad. Please know that most PWDs are unaware (its called anosognosia), while many family, friends, etc. may be in denial. The only solution for that is to learn as much as you can about Alzheimers and what may lie ahead, plus how to deal with it. This links to a free article (short e-book actually) that most of us feel is the best explanation with examples of the journey. https://www.smashwords.com/profile/view/understandingdementiaexperience

Whenever I feel frustrated, irritated, or inconvenienced by having to change my behavior and adapt to this cruel disease, I give myself a quick reality check. Because, we are the fortunate, healthy ones and STILL CAN change our habits and behavior as needed while our loved ones with dementia sadly cannot. If that's not a wake up call for me to suck it up whenever I'm feeling understandably overwhelmed, it does refocus me.

Our forum mates have given you some good feedback here. It is not a fun journey. But thank goodness they have us, for whatever time it takes to either provide compassionate care ourselves, or identify someone or somewhere who can. Every human being deserves that. Here are some of the different ways that Alz may affect your DW, and suggestions for making the losses easier on her and you as well. https://www.vha.ca/2021/compassionate-care-strategies-using-the-7-as-of-dementia/#:~:text=The%207%20'A's%20of%20Dementia%2C%20or%20anosognosia%2C%20amnesia%2C,opens%20in%20a%20new%20tab).

Yes, it takes some real getting used to, but you can do it if your choose to try (it is a choice I make over and over as some days are not easy). But my DH cannot do it by himself and I love him so much, it is my privilege to help make his decline a little easier if I can. This disease is terminal and cruelly extractive for our spouses. That's the cold hard truth, as outlined here: https://alzconnected.org/home/leaving?allowTrusted=1&target=https%3A%2F%2Ftala.org%2Fwp-content%2Fuploads%2F2019%2F04%2FTam-Cummings-LLC-Handouts.pdf

If you really do not feel cut out for caregiving there is no shame in that either. Please reach out to the Alz Assoc 1-800 helpline for 24/7 free care consultant discussion on options to get your DW a safe caregiving plan in place. There are options. I am sorry you both are in this mess with us.

M1

Hi Mike, i chuckled because my first question on this forum-two years ago this week- was almost identical to yours, the repetition was driving me crazy. But this forum helped me realize that i was the one who had to adapt, because she couldn't. I quit trying to correct her or remind her that she had just asked me that.

She has been in memory care since the spring of '22, after not knowing me and threatening me. The repetition is still happening and is still disheartening, especially since she now has lost most all memory of our 30 years together. As much as you don't want to consider it, you need to have a backup plan in your pocket. Home care proved impossible to find in our rural area (not that she would have accepted it easily, either). And there are many of us here for whom solo caregiving is nigh overwhelming. Hope you will find this forum as helpful as i have.

Joydean

Mike welcome. My dh is ending stage 6 and entering stage 7, can barely say a few words, but ever few minutes he will ask what day? I know he’s asking what day is this. I’ve already told him more than a dozen times but sometimes that’s all he does say so I’m glad to hear his voice! Hang in there, it’s Truely a hard road!

toolbeltexpert

Mike welcome, so many have already given you sound advice. I know what it's like, I have lost it more times than I care to say. One thing I learned the hard way was my dw picked up on my visual communication, ie rolling my eyes. Instant trouble! I had to learn, because she wasn't doing it on purpose, but it's hard. We have been married 45 years. My wife is in 6 somewhere she is in a mcf just over a year now. You mentioned you had long term insurance. How long will it cover? I had thought I could keep my dw at home till the end which was until I couldn't.

There is a steep learning curve as you will become your dw's everything. Do you have a dpoa? ThIs one of the first things I did and found that it has been a lifesaver.

Keep posting and you can do this.

Howaboutnow

Oh Boy, we can all relate 😊 An extra high level of absurd behavior here this morning. I’m doing a lot of self-talk so i don’t blow. I’ve found sometimes if I’ve answered a question several times in a short span…when i just can’t anymore,,,i might say “i’m not sure” or something else that relates I don’t have an answer. Not having to hear myself give the same answer one-more-time gives me some relief.