Anyone else taking care of otherwise healthy dementia patient?

SiberianIris

Thank you for the update. I've been following this thread since you started it. We're 2 going on 3 years into a dementia diagnosis with my 96 y.o. mother. Other than her failing brain, she is otherwise healthy and has progressed from stage 4 to stage 5.

I am sorry you are in this hell of a holding pattern. It is hard to fathom how some people's bodies can go on living even in stage 7 when supposedly their neurological decline is affecting their organ systems. Dementia sucks 😥

Ragfoot

https://alzconnected.org/discussion/comment/237917#Comment_237917

I asked for and received a Hospice evaluation for my DW. She was accepted and determined to be solidly in Stage 7c. After 3 months, as you put it "with no signs of decline", they "graduated" her out of the Hospice program. I was given a list of conditions, that if they were to occur, to request another evaluation.

vtech1951

So approaching the 4 year aniversary of her late and last stage of dementia with NO changes..well I suppose you could say she is sleeping a bit more but that could be age related as she is approaching 87 soon. Not to sound mean, heartless, or uncompassionite, but I think to myself maybe today she will wake up with no appetite,maybe today the day she wont have enough energy to scream, maybe today she will sleep all day, but no the last 4 years of this has put everyone through hell..she is miserable every day, her life consisits of staying in bed every day, always wanting to eat, and yelling nonsense at the top of her lungs. She is also on her third hospice program, so if this keeps up for another 6 months (which I know it will) we will have to search out ANOTHER hospice.

SDianeL

https://alzconnected.org/discussion/comment/247614#Comment_247614

such a sad heartbreaking disease. So sorry you are going through this. 🙏💜

vtech1951

I will update again if there are any declines as I wont leave the board hanging.

Anna2022

Forgive me if you've already done/thought of this, but would one of the new GPL-1 meds that lessen appetite be an option to help with the hunger issue?

Maru

Sorry that you find yourself in what sounds just awful. No advice…just sympathy.

tboard

https://alzconnected.org/discussion/67602/anyone-else-taking-care-of-otherwise-healthy-dementia-patient

My DH has no medical issues other than vascular dementia and Alzheimer's. His blood pressure is much lower than mine. He is a little over weight but not too bad for an old American. He requires around the clock supervision but not much care. He is in a later stage like maybe late 5 or early 6

vtech1951

Well Sept 1 marked the fourth year aniversery of bringing her home from the hospital, the doctors immediatly put her on hospice care, since she lost the abilty to walk this was the begining of taking care of her full time at home. This meant having to change her, feed her, bathe her etc we were all on board because all the medicals professionals said due to her late stages she would only last maximum 6 months,, family and friends came to say thier last goodbyes yet again we are now at the 4 year mark! She is on her third hospice program (the other 2 kicked her off of it), she turns 87 very soon, and as of this writing she is still going strong. People we knew 4 years ago that we sort of lost touch with almost fall out of their chair when we tell them she is still around. This cannot be normal and must be a medical abnormality I am sure, conversation is still a no go, her life is reduced to 3 things eating, sleeping and yelling at the top of her lungs…

vtech1951

Well today marks her 87th birthday but there is no joy…4 years ago is when we brought her home from the hospital as she was in late stages of dementia that took away her ability to walk, feed herself, go to the bathroom, have any kind of conversation with her she just eats, sleeps and screams all day..still waiting for any signs of decline the majority of users over the past 4 years have experinced with their loved ones, everyday is the same old thing. Physically she is stong as ever and the late stages seemed to have plateaued long ago..will update again IF anything changes.

harshedbuzz

@vtech1951

Thank you for sharing your reality here. My aunt's end was much as you describe and it was hard on those taking care of her. This is so sad. Her stage 7 was a little over 2 years; DBAT states 1-2 years as an average.

HB

vtech1951

https://alzconnected.org/discussion/comment/255200#Comment_255200

"DBAT states 1-2 years as an average"…when we brought her home all the medical professionals had told us she would live 6 months max…like i say its been over 4 years now