Mother has forgotten her diagnosis

Leesi

I am a relatively new caretaker. My mother was initially diagnosed with Alzheimer's in October by her primary care doctor. Her overall health was in a terrible state at the time due to her long time neglect of her own health while she cared for my grandmother who also has Alzheimer's. All of her children live several states away and knew she was having a hard time, but would always end up with her arguing that she was handling everything fine and was adamant about not moving or taking any of our advice. Long story short, after I had to rush to her home for a welfare check, it became clear that things were much worse than we thought and she could no longer stay by herself. I stayed to help sort things out and nurse her to health.

During this time, she received the diagnosis. She's being treated for her various ailments and is physically getting better, but she's incapable of handling her finances or keeping appointments or getting around. She is now seeing a Neurologist and we're just waiting on confirmation of the diagnosis, but my mother does not remember her initial diagnosis or any of the plans I told her about, including moving her in with my husband and myself. She keeps telling people that I am here visiting for a few days, and doesn't realize I've been here for months. Whenever she mentions that she'll miss me when I leave and I remind her that she's coming with me, she is adamant that she is not coming back there with me. When I gently tell her that she can't stay here on her own because she keeps forgetting things, she says she's always been forgetful.

 She honestly does not remember that she's been diagnosed with Alzheimer's. In her mind, the last few months have been business as usual; there's nothing wrong with her, and she doesn't realize that I've become her caretaker. It was one thing to have this argument when she was just having a difficult time, but it's a whole different ball game now that she's actually incapable of staying on her own where she is. I don't know how to handle this situation at all. Any suggestions or advice?

star26

Welcome Leesi. It's okay if your Mom doesn't remember, agree with, or accept her diagnosis. Many people with dementia don't. Let her say whatever she says and just go along with it. No explanations or arguments. When it's time for you to leave with her, you can just get her in the car and start driving. At some point, you can say "Surprise! It's been so great visiting you, I thought it would be fun if you visit at my place for a little bit." And maybe "I was hoping you can help me with X,Y, and Z." This is what another member here did. She told her Dad they were going to breakfast and then ended up driving for 2 days to get to her house with him. Continue that fib for as long as you can. If she starts itching to go home and you need a new excuse, you can tell her there's been a flood or other issue at her house and it needs to be repaired first. And then it's delayed, etc. etc. With her poor sense of time you may be able to get along with these excuses for a surprising amount of time. And eventually, she will likely stop asking. When preparing to move her out, just pack up the essentials and either put them in your car or ship them to your house. She does not need to be aware that you are doing any of this. Once she's settled at your house, hopefully you can arrange to return to her house without her to do the rest of the clean up or get more belongings.  Lying to her and being sneaky may sound very strange, ridiculous, and un-doable but this is truly the best way for working with a person with dementia. It's most effective and also the least stressful for all. This is what they do in memory care centers etc.

terei

It is not productive to discuss the matter with her.   Nodding + agreeing with her comments are all that is necessary.  Go ahead with whatever you are planning.   Input from her about what is going to occur is unnecessary.

You dont have to tell her your plans.  She will not retain the information anyway.  It is hard to change the habits of a lifetime which include agreement to move, or anything else.  I would also not remind her of her diagnosis.

Cynbar

I agree with the others. Don't expect her to remember her diagnosis or make a reasonable plan --- she can't, her brain isn't working right. You need to be the parent now, making decisions for her safety and carrying them out. This was one of the biggest hurdles for me to get over, understanding that I can no longer reason with my DH. You will find that correcting her or arguing with her will only frustrate both of you. Whatever she says, just let it go. Most dementia patients think they are just fine, and can't be convinced otherwise. It's really about kindness now, and keeping her as comfortable as possible. Don't discuss the plan with her in advance, and when the time comes, just get in the car and go. Present it to her in short term increments once she sees what's going on ---- a short visit to help you in some way, not being alone over the winter, her house needs some work. Then, just keep extending it. All of this will get easier. I used to go crazy trying to make my DH understand what was "right." Now, it mostly goes right over my head, and we are both a lot calmer for it.

zauberflote

Leesi, welcome! Star26 and Cynbar said everything I would have, only very much better. We didn't know any of this when we moved (had to fly, and we knew she'd love that part, and it was her final "grand tour") our mom 600 miles from AL to MC in my city. It was awful after the flight was over. It might have been marginally better had we presented it as a fun and temporary trip, but she couldn't even visit my split-level house because she couldn't do stairs. The MC was far from a hotel. 

Your mom might have anosognosia, which is the total inability to know that one has somethjng wrong with oneself. 

LicketyGlitz

Hey Leesi, I haven't got much to offer as everyone else has given great suggestions, but I was just looking up anosognosia for another forum question and thought I'd share it here too: https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm

Zauber's right, it may be part of what you and your mom are dealing with at the moment.

On another note, I moved in with my mom 4 years ago to help her to the end of her life. I just wanted to let you know this is a tough, tough, infuriating, punch-yourself-in-the-face-from-frustration road but it also has it's love and laughter side. I wish you and your family access to both!

Good luck to you all.

Leesi

Thank you so much for responses. It has been very frustrating and heartbreaking at times, and I've been struggling with whether I should remind her of her diagnosis or not. I have opted not to because I know she won't remember it long anyway, and I feel it would be kinder not to. It just breaks my heart to see her trying to reconcile things sometimes when she realizes she's remembering something incorrectly, and the times when she seems so coherent that I almost forget myself. I am still struggling to accept it myself and become completely comfortable in my new role as caretaker. As some of of you have mentioned, it does indeed feel very strange and sneaky already having taken over responsibility for her finances and medical care, but I know I am doing the right thing for her. I guess I just have to keep reminding myself of that.

windyshores

I won't repeat what others have wisely written. I would just add, go with your mother's personality.  For instance, even with dementia, my mother likes to be on control, especially at doctor's visits and with money.

For the doctor, I communicate before and after the appointment, so she can feel like she is in charge in the room. Patient portals are your friend.

For financial matters, I am on her bank account but gave her dummy checks (old ones) that don't have my name on them. She doesn't have stamps so if she makes a check out as a gift, I pocket it and write the check myself with the right date!

I tell her that she is the boss and I am her assistant. She loves it when I joke that I have been promoted to executive assistant.

One example of going with the flow: she loves her gin. Pre-COVID when we went shopping she would ask for gin. I took her to her favorite food store, that carries wine and beer, and she would look for gin and I would feign surprise that it wasn't there.  She would be tired and say we could get it tomorrow.  This worked for three years!

Believe it or not, it gets easier in some ways as they get worse. Emphasis on "some."

I have Power of Attorney and a medical proxy that was invoked by the doctor due to dementia. She doesn't know any of this.  I can't imagine telling her she has dementia, even when she claims she played tennis last week   Try to avoid correcting and disagreeing- it's hard!

Rockym

So much about this diagnosis is how WE respond to it.  Just like windy, I tried very much to go with the flow for my mom.  I used fiblets like there was no tomorrow and would pride myself on how good I was at lying.  I never lied or fibbed before, but back then I could see how helpful it was to both of us.  I learned more patience caring for mom then I did with my kids because with children you really need to be firm and truthful.  I hate when people compare dementia to toddlers.  You can give a toddler a time out, you cannot do that for a loved one.

Also, we all lose our tempers from time to time.  I would visit my mom around 3 times a week at her community where I moved her.  I cannot recall what had me upset that day, but possibly my own kids so I wasn't as patient when I visited mom.  We both yelled at each other and knowing her memory, I walked out of the room... took some breaths and came back about 3 minutes later.  I said, "Hi mom how's it going today.. nice to see you this morning.. should we get some breakfast?"  She totally had forget we were yelling at each other and I got a redo.

I tell this story because so much about this crappy disease is how we react to it.  My mom is gone now, but looking back I wouldn't change a thing.