Anyone else taking care of otherwise healthy dementia patient?
Comments
-
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 😥
1 -
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.
0 -
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.
4 -
such a sad heartbreaking disease. So sorry you are going through this. 🙏💜
2 -
I will update again if there are any declines as I wont leave the board hanging.
4 -
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?
0 -
Sorry that you find yourself in what sounds just awful. No advice…just sympathy.
0 -
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
0 -
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…
5 -
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.
4 -
@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.
HB0 -
"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
3 -
Well with Nov here 2026 is just around the corner..not so great for us, 2026 will not only mark MILs 87th birthday but will also mark almost 5 years of being bedridden with late stages. She recieves no visitors anymore, all friends and family said their last goodbyes years ago (she wasnt very friendly to any of them BTW) , still waiting for ANY signs of decline!! If she lives to 90 everyone is in big trouble, not only are we at the end of our rope,,the money will have long run out..just looking for advice if ANYONE has had similar experience with this..it seems almost all lost their loved ones within a few months of late stages,,not going on 5 years, do you guys know how hard it is looking after someone for so long.
6 -
Well, that is certainly en eye opener…From everything that the experts say, 7th stage is relatively short. Several of the storiese here contradict that. I pray that will not be DH's case. He is 90 and in great health, but in stage 4 and has brief moments of loss of cognition but otherwise "fine". Sending hugs and prayers for you.
0 -
Happy New Year,or is it..MIL still showing no signs of decline…as 2026 approaches her 5th year in hospice also approaches, this has to be some sort of record! And not in a good way,,this is very frustrating and not to leave anyone on the board hanging that has been with me since I first starting posting almost 3 years ago, I will only post again if she shows any signs of decline, be it next week, next month, next year or in 4 years…see ya!
3 -
Hi @vtech1951 I remember this thread and some of your others. Thank you for taking the time to update us.
I wish things were different for you all.
HB0 -
Thank you for the update . I often think about your situation. Hugs for 2026
0 -
yes, she's been at home since her diagnosis in 2014. it is a nightmare.
1 -
I'm right there with you. My mom was diagnosed 12 years ago and has required 24/7 care for the past 10 years. now she just screams, f bombs, punches, scratches and will throw objects if we keep anything in reach. it's a living nightmare. she'll be 95 this september.
1 -
Wow we are in the same boat….?s for you
- Does she walk or in bed all the time
- does she get visitors
- how does she spend her wake time day
- have you had any close calls where it looks like she is going to die
- do I really have at least 5 more years of this????
1 -
things have taken a drastic change in the past month. my mom was diagnosed with end stage renal disease last month. she's now on home hospice and is laying in bed dying. we are giving her morphine daily. she has days to live…maybe a week. while I feel relief that she won't suffer the final stage of Alz disease, I have this profound sadness watching her die. she was such a wonderful mother before this illness took over her brain.
2 -
Hello everyone, I thought I would give a mid year update..MIL still shows no signs of decline she is now 88 and into her 5th year of hospice. She is still 24/7 in bed and screams nonsense all day. We will know soon if medicare is going to discharge her from hospice and put in pallitive care AGAIN. In fact hospice nurses have only been coming every 14 days now as that is the bare minimum they can come. Everyone is tired of this,,she has no life, she just exists but at this point what could she possibly die from? I will update if there are any changes or perhaps at the end of this year.
4 -
Yes, my Dad is the same, he’s fallen and broken a leg, same day of surgery to repair he was up and moving in 3 hours. Labs are always normal. Can feed self. Hyper sexual unfortunately which memory care is attempting to deal with although I think they could do way more.
0 -
It’s such a nightmare existence. My soon to be 100 year old MIL has been in an advanced stage for about 5 years. She can still walk, toilets herself and eats very little. She still lives in her own home with my SIL as the caretaker. She wanders aimlessly, only communication is glaring at my SIL and talking nonsense. She has no health issues besides the ALZ. Her husband died in 2010 and at that time (still healthy) just wanted to join him; she wouldn’t want to live like this.
Her son, my 79 year old husband, was just diagnosed last August, is now stage 5. I can’t imagine another 20 years of this.
2
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 685 Living With Alzheimer's or Dementia
- 391 I Am Living With Alzheimer's or Other Dementia
- 294 I Am Living With Younger Onset Alzheimer's
- 18.7K Supporting Someone Living with Dementia
- 5.8K I Am a Caregiver (General Topics)
- 9.2K Caring For a Spouse or Partner
- 3.3K Caring for a Parent
- 246 Caring Long Distance
- 202 Supporting Those Who Have Lost Someone
- 13 Discusiones en Español
- 1 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- Vivo con Alzheimer de Inicio Más Joven
- 12 Prestación de Cuidado
- 3 Soy Cuidador (Temas Generales)
- 8 Cuidar de un Padre
- 23 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 8 Account Assistance
- 15 Help