How much do I tell my LO?

Laura Van

Last month my DH read the report from the 3-hour memory/neurology testing people that said he has Alzheimer's. He heard it from the neurologist/memory doctor a couple of weeks later. A week or so after that I used the word Alzheimer's, and he said, "Wait, what about that? Tell me." I did tell him, but then he forgot. 

He knows he has a bad memory issue and that we're trying to cope. He has agreed to stop driving, leave home unaccompanied, use space heaters, etc. I believe he'll be OK with it when I ask him shortly to sign a financial POA. But, he doesn't remember that his condition is going to get worse, it's a terminal condition, and he has about 8 years or so to live. 

When my 90-year-old German-heritage g'mother was in the nursing home, I'd tell her each time I visited that the Berlin wall had come down, and she was happy each time. This is different.

How much do I tell him about the specifics of the condition and  future if he's just going to forget?

Thank you for your advice.

M1

Hi Laura and welcome. So sorry you are facing this. I found there were moments i could discuss it with my partner but more times that i couldn't. If you're not familiar with the term anosognosia, read about it: its more than denial, it's true inability to perceive their deficit. My partner has it, as do most people with dementia.

Good that you are getting the poa done. We were lucky in that we had done those things years before-but then i had to change my documents since she could no longer serve for me, and you will need to do that too. So painful to realize these gradual losses of the spousal role.

truth be told it may not matter what you tell him, because he will forget. Probably best to just trust your instincts.

Quilting brings calm

I would stop using the words Alzheimer’s or dementia.  Just refer to him having memory issues, or depth perception ( the excuse for not drinking or slow  reflexes.   On his good days, discussing dementia will upset him. On his bad days, it will confuse him.  There is no reason to bring up the fact that it’s progressive and terminal.   Instead ask him things like ‘ if the doctor told you that you had a terminal illness, what do you think your wishes would be?  

My mom has heard  the word dementia from doctors several times the last two years.  She does an amazing job of ignoring it and not connecting the dots.   Even though she knows she has memory issues and she admits to being confused and unable to handle the bills etc.    

My step-dad was told he has dementia after the results of the 3 hour testing was in. The doctor handed him the detailed report ( gave me the summary).  He supposedly read it later.  He’s never once connected the dots about it.   I don’t even bother to try to discuss it with him as it’s pointless.  He wanted the activity director to read it as if he was proud if it, never once realizing that it contained personal info about unacceptable behavior on his part.  

I just do what needs to be done about the bills, the medical appointments etc Basically they are like tweenagers, and I do for  them what I did for my own 11-12 year olds  once upon a time. 

Ed1937

He knows he has problems with memory. IMHO, that's all he needs to know. Telling him the raw truth of what's in his future can do nothing but upset him. If he asks about it, just tell him he has issues with memory, like a lot of older people. I would not use the word "Alzheimer's" or "Dementia" to him at all.

GothicGremlin

I have a slightly different experience. My sister knows she has Alzheimer's, and when she was in the earlier stages would ask me questions about it. We talked a lot about it. Now that she's later stage 6, she still knows she has it, but doesn't ask me questions.

The agreement that we made right she was diagnosed was that I wouldn't tell her anything about a symptom (or whatever) unless she specifically asked me about it. Kind of don't ask, don't tell. She explicitly told me she didn't want to know what happens when she gets near the end. She doesn't want to know if she can die from this (even though she probably does know), so I've said nothing about that to her. It's an approach that's worked for her.

I've always wondered about anosognosia because she knows she has Alzheimer's. She just doesn't realize how compromised she is. From discussions here, and with Ed, it seems like not realizing how compromised you are is a form of anosognosia.

harshedbuzz

Laura Van-

Hi and welcome. I am sorry for your reason to be here but glad you found this place.

In the context of dementia, the right thing to say is almost never the absolute truth but rather the kinder option. This allows you to be their ally rather than bearer of bad news.

Dementia is about so much more than memory; reasoning and executive function are also greatly impacted early on and can prevent a PWD from processing such dire information. Sometimes that extends to using therapeutic lies which we call fiblets. In a situation where he keeps mentioning the report (which I would tuck away as it could be a trigger), I would devise a breezy fiblet about everyone having a senior moment from time to time and that you have each other to lean on. 

HB

VKB

If it makes him upset, do not tell him again.  That's what I need with my mom.  Peace always, Ronnie