Their awareness

Saya_G

My LO is stage 7a; that’s the best guess by hospice. She still seems to know that I’m significant, but sometimes thinks that I’m her sister, niece or one of my other sibling. The other day she directed a question at both me and my sister, she said, “which one are you?” We do not look alike. But that day she was adamant that we looked identical, and couldn’t figure out which we were. She still has good days and bad, but on bad days makes little sense.

She has also started having more health issues that wallop her, for example UTIs and bronchitis. She cannot walk on her own, although the origin of that issue is physical. She still feeds herself, albeit slower. At times, she still feels urges that she needs to use the toilet, although often goes in her depends and doesn’t know.

Pre dementia my mother was a sharp lady. Not college educated, but lots of common sense.

There are times when she’ll say things like “is this all my life is going to be?” And other questions like that. She can’t keep her thoughts straight, she sometimes things her parents are still alive, she is often worries about the children getting home from school before she does - yet at times she seems to have a keen awareness of her own situation.

Is this common or normal for later stage folks with dementia to be aware of the advancement of their disease?

harshedbuzz

Saya_G-

I don't know how common it is, but as dad (who remained very verbal until he passed) transitioned from stage 6 into what was, unbeknownst to us, stage 7 he had fleeting periods of lucidity and expressed the belief that he was dying.

This was part of the reason I pushed for placement in MC; he was expressing a notion that since he and my mom "do everything together" that she should die when he did. 

He was still ambulatory but unsteady, he did sometimes use the bathroom and he could self-feed finger foods or thing he could spear with a fork. I brought him lunch (Chik-Fil-A strips, waffle fries and a shake) the day he died. He fed himself, flirted with the SLP and visited the bathroom solo while I was there. She was screening him for swallowing difficulties, but an Xray taken later showed he already had aspiration pneumonia. 

HB

mommyandme (m&m)

Even though my mom is staged at 7d by hospice, she’s still in there somewhere.  Little nuances of her personality will shine through which is fortunate cause she was a gentle person.  I just wish a I could understand her words since many times she’s obviously trying to discuss something important to her.  I feel that I’m not helping her in the moment when she seems to be concerned or whatever.  For us, the fluctuations in abilities or verbalization is fluid, confusing but our normal.  She doesn’t seem to know about her disease or much of anything outside of what she’s immediately seeing, hearing or physically feeling.  

She hasn’t said my name for years.  I think she knows “she made me” but can’t pull my name up.   We’ll see what she remembers of my brother when he gets here today.  It might take her a little time but I believe she’ll know him before he leaves as being someone she made.  

I’m very sorry for your situation.  I sure wish I had these answers, for myself too.  

May flowers

M&M, I could have written the exact same post about my FIL, and close to the same stage as your mom. His personality still peeks through, our caregiver is starting to notice things - like he has a sense of humor and I’m like, I wish you knew him when!

The past few weeks he has been trying to communicate things to us and last night he was almost urgent. It was about basketball, a plane crash, something about 7 people. He kept saying if someone had done something… but we get like random words and short phrases, almost impossible to decipher, it is as if we are getting every 10th word of the sentence he is thinking.

My husband thinks it may have been a plane crash in Indiana in the 70’s with a basketball team. I don’t know. When I told my FIL I don’t know about the plane and said I would check it out, he said “You should know that!” Anyway… he urgently wants us to know something but we can’t make it out - from context or anything else.

He also doesn’t know us, DH or I. He can recall a little about DH or his other children, and he laughs when we joke that DH is the smartest (because my DH really struggled in school), he still gets that humor. But he may not get that DH is right in front of him.

MN Chickadee

It did seem like sometimes the stars aligned and the brain synapses fired just so and my mother had some awareness for a few moments here and there. In  those moments try telling her what is in your heart and try to reach her with positive messages while she can receive them. Soothe her with telling her good things about her past and her life and about yourself and your life/kids and what she created.  It may reach her in ways that will surprise you.

Cyndisaunt

Every person is unique, but there are so many commonalities. 

I hold very still during the moments when my LO is "back", as we refer to these fleeting moments, and try to be present and listen closely. I started making notes so I can try to puzzle it out later rather than missing something while she is speaking or gesturing. 

We share so many experiences with our LOs. There are lot of books about other's experiences. I am so grateful for this message board as I feel less alone and even though I would not wish this way of dying on anyone, I am feeling so fortunate to not be alone. 

Hugs to you and your LO,

Cyndi