No advice needed, just a rough day

AlexandriaAlz

This is kind of a venting/“poor me” post but wanted to put it somewhere. My dad (77) has anosognosia most of the time but every so often he has moments of clearly recognizing his Alzheimer’s. Every time we have one of those conversations it wrecks me. Today we had a nice day out. His daytime caregiver called out sick and I took the day off to do a drive out of the city which is a nice change of pace for him occasionally. We went to a winery and he had his monthly half glass of wine which sometimes feels like a truth serum. 

Paraphrasing a bit but he said “I’ve lost who I am” and when I asked him what he meant he said “i can’t think. It’s just so hard. I can’t do any of the things that make me who I am.” 

I try really hard not to get emotional around him about anything (even stuff like someone cutting me off in traffic) so I had to put on sunglasses inside to try to keep it together. The times that he doesn’t remember or exhibits some frustrating behaviors are hard, but watching him experience the loss is so much harder. 

I’m sorry for all of us going through this. I’m sorry when it’s so sad. I’m sorry when it’s so frustrating. I’m sorry if it ever feels lonely. But there are so many of us and none of us are alone in these dark places.

LaurenB

I'm glad that you and your dad were able to have a nice outing together and that he feels that he can be open with you.  It's so hard to hear when a LO has a moment of clarity.

Mckangel

It is very kind of you to take him out:  I admire that immensely.  Just wanted to say that your post made me stop and think of what may be in my future with my mother.  My heart goes out to you.

SusanB-dil

Hi Alexandria - bet that was difficult to hear - for him to acknowledge so much like that. ((hugs))

Gardner

Your father is fortunate to have you.  When my husband has those moments I realize how much more difficult this is for him and I stop feeling so sorry for me.

kvik

I'm so sorry. My dad's descent into stage 5-6 was very quick following a covid infection this summer, so I was luckily not exposed to too many of these moments of clarity, but I know how you feel. To me it was far worse to see him sob about losing his mind than the confused but usually quite content state he is in now, even if it's deeply upsetting on a personal level that he doesn't quite know who any of us are anymore. I've always been a daddy's girl so the fact that he doesn't quite know me is heartbreaking. It's a horrible illness, I'm sorry for you and your father and all the rest of us going through it. Hugs.

Silverweed

The most heart wrenching days for my sister and I were when, in her lucid moments, our mom would realize there was something seriously wrong with her mental and emotional state of mind.  All the explanations in the world never quite satisfied her desire to know what was wrong with her and how (if) we could fix it.  She'd be "with" us one day and then somewhere else in her mind the next- we never knew what to expect, especially when she'd forget who we were and why we were trying to take care of her.  Broke our hearts and sometimes our spirit...  It's hard to think and act reasonable and logical around such an illogical and confusing illness.

Ci2Ci

For what it's worth:

Up until 2 months ago ("the Big Downturn"), my LO had great self awareness about her deficiencies. I was always honest & transparent with her, telling her that she'd been diagnosed with dementia. She is quite intelligent (dementia having taken none of that), and interested in learning. She was curious to know more. I even found, at the library, a dense booklet about it, and she'd read it cover to cover.  And, cover to cover again, because dementia. *kind grin*  

I made a FAQ list (and laminated) to place by her recliner chair, to which she would refer often to fill in those memory gaps and reorient herself. She was interested in strategies to help her help herself, and she appreciated the things that I'd do for her because it's a struggle for her cognitively.

Now, she no longer seems to recognize (or appreciate) that she can't take care of herself. She will say "my mind isn't working right today" and yet still challenge the answer/explanation provided to a question.  The day that I knew things had really changed for the worse: she said that she needed to go home because her daughter was home all alone.  

Me: "Do you think that your mind is reliable?"
LO: "Not all the time."
Me: "Is it possible that you are wrong about that [daughter home alone]?"
LO: "Absolutely not."

I'm having to learn how to navigate this 'new normal'. I've now started telling LO that she had a mini-stroke (maybe even true), as a way to explain why she can't leave the hospital (/SNF) just yet. And, as a fiblet to suggest that with proper rest & recovery, she can get better. Just seems kinder?

Ci2Ci

I've always thought that the forgetfulness was rather protective. They'd forget feeling sad, scared, or disruptive behavior -- kinda the only thing for us that can take the sting off of hearing them despair.