I know it's impossible to tell how long someone with dementia will live (the "how long is a piece of string" question). I would love to hear anecdotes from people whose family members proceeded very quickly through the stages of dementia, whether due to it being vascular or otherwise, and how long the last stage lasted or has lasted thus far.
I've read a lot of stories about people with dementia who progress more slowly and gradually and then languish in stage 7, in an infant or even fetus-like state, for years - but fewer cases in which the person's decline suddenly slowed way down at the end.
I posted here recently about my MIL who is early stage 7, likely vascular dementia (never able to withstand neurological testing for confirmation), and completely miserable in memory care. She is no longer walking, needs full assistance for all ADLs, can't sit up unassisted, most of what she says doesn't make sense. When she's not sleeping, she's crying or ranting. She won't take pills so we are trying to figure out meds and about to get her a hospice evaluation. We know she'll only continue to decline from here and just wondering how long she could possibly be in this misery.
She's been checked for a UTI and all the usual issues and was given a pain patch just in case there are hidden physical causes. She has no comorbidities except high blood pressure and severe leg edema. She was living alone and driving 2.5 years ago, so this has been really fast.
I wish I could give you a timeline, but this is all, as I always say, as individual as a patients own fingerprints. The MD involved in the hands on care of a patient is a best judge, but they often shrug in helpless confusion as much as the rest of us.
I am so sorry and wish you well.
My mom's vascular dementia pretty much took her life in 6 years and 2 months. She also had congestive heart failure which was her official cause of death, but the dementia had spiraled downward at a VERY fast rate the last year of her life.
Hospice came on board on 12.21.21 and mom passed on 2.22.22, just 2 months later. She went into her bed one day feeling tired, became semi comatose, and passed 1 week later. She was kept comfortable and anxiety free the whole time.
Nobody can say how long this will take, in your mom's case, but the hospice nurses can give you a pretty good idea.
Best of luck with a difficult situation.
Watch for a reduction in eating and drinking. For us, that was the major change that had me call hospice. If I could do it again, I would have called hospice much sooner. Glad you are taking that step.
My thoughts and prayers are with you.
The bottom line is no one can predict when someone with brain cancer or dementia will pass. I also know nursing facility staff and hospice nurses are in a much better position to recognize any signs of impending death than doctors since they do so much more patient care. One Sunday morning a nurse from the facility called at 6am and said she had been nursing for a long time and she was recognizing he had just a few hours to live. Then I went to his bedside.
I lived 9 hours away from my parents by car so I spoke to them at least every other day on the phone. But 2018 mom was 95 and dad was 92 and they were still living independently in an apartment. She always enjoyed our phone conversations but shortly after Christmas 2017 she stopped taking my calls and it was always Dad that took them. I visited in May 2018 and she didn't seem herself but my father convinced me everything was fine. In June that year she was having difficulty breathing so required a respirator at that point she stopped going out daily as she previously had with Dad.
When he fell and needed 25 stitches in September of 2018 I knew it was time to get them into an LTC and they were in a shared room by the end of September and I stayed locally till the end of November to clear out their apartment and acclimate them to their new home.
By November she appeared healthier but had the communication skills of approximately a 5 year old.
Through February her health started to diminish she stopped eating solids and outbursts became quite commonplace. I arrived in early March and for the 12 days I was there she was out of her room once in a wheelchair and spent most of the rest of the time dozing or crying. I will add that final 12 days I had with her I heard her speak about her mother and sister more in that period of time than in the 50 years previous and they'd both been gone for 30 and 50 years respectively. When I left on March 14th I knew there's a very slim chance I would ever see her alive again.
March 16th while my dad was at lunch she got out of her bed to go to the bathroom slipped and broke her hip.
Although an enthusiastic young surgeon wanted to do surgery dad and I mutually agreed it would serve no purpose. She was at the point that to keep her in bed she'd have to be either restrained or sedated so that the hip could heal and even if it did heal she was at a point she was too weak to a come through the surgery or be walk once a surgery was completed.
Had the slip and fall not occurred I have no doubt my mind she would have been gone within weeks. she hadn't eaten solids since January and didn't want any of the supplements they wanted her to have.
That being said it amazes me how long these people hang on I in fact had to tell my dad that it was okay to let go when he passed (after 36 hours of listening to his labored breathing) so I would say how long this last will depend on the strength of your mil's will.
Wishing you the best
We are eternally grateful that this went so quickly, for her and for all of us.
He always looked pained, which broke my heart. But he was still taking food, although the spoon had to be put in quickly through his constantly moving jaws.. I thought that at that point, the effort to keep
him alive, although seemingly ethical, was actually cruel. He died quietly while being readied for bed by the caregiver, who put her hand on his head and said, "It's alright, John, to let go..." and he did. So in sum, the last six months were especially grueling, but the decline was clear. Not until then.
Another patient there, a woman who had been a friend, had gone in more than a year before John. As of now, she is uncommunicative but in "good health," so she has a much longer stay in store.
I hope this helps. It is my first time actually writing it down.... dementia and Alzheimer's are going to be a curse for upcoming generations. Treatments have to be resourceful and charitable, both.
As dementia progresses, a person will need more help and, at some point, will need a lot of support with daily living. However, dementia is different for everyone, so it will vary how soon this happens and the type of support needed.
It can be helpful to think of there being three stages of dementia, early stage, middle stage, last stage.
These are sometimes called mild, moderate and severe, because this describes how much the symptoms affect a person.
These stages can be used to understand how dementia is likely to change over time, and to help people prepare for the future. The stages also act as a guide to when certain treatments, such a medicines for Alzheimer’s disease, are likely to work best.
Matilda
Be sure you have a DNR or POLST on her.