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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.

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My husband died on Jan. 5, after a long bout with dementia. He went into a facility, Rogerson House (excellent care, I note), on June 5, 2020. For the last year and a half, he did not seem to know me, definitely by a year ago. He got a mild case of Covid which MAY have hastened his decline, but he was incapable of any interaction--the notable exception being beating his hand on a table in time to an "oldie" being played at the time. Music, by the way, should be available until the end...

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.
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AnnDylan Mar 2023
I shed many tears reading this...I'm sorry for your loss. Reading this as I watch the daily changes in my Mom. I've been caring for her over a year now in our home. She had been in an Independent apartment, then A/L but was not getting the care she needed. My husband said lets bring her home..I know I have a long road ahead of me. We have just begun to enjoy my husbands retirement...we are planning on leaving her in a local new facility for respite care, so we can have a weeks vacation. Your words have helped, thank you.
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Tell mom's doctor you want the meds ground up (those that can safely be) and added into pudding so your mom won't realize she's getting dosed. When my mother started to refuse her pills, including pain meds for the neuropathy that plagued her, Her PCP ordered the QMAPs at her Memory Care AL to grind them up that way. Other RXs are available in liquid form.

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.
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Mom was diagnosed via MOCA w early stage dementia in Dec 2021, with warning signs already summer 2021. She just passed away a few weeks ago in Jan 2023. So just a bit more than a year. In particular, the final 4 months, from October 22 to January 23 -- the demise was visible on a weekly basis.

We are eternally grateful that this went so quickly, for her and for all of us.
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It is just impossible to tell. These things often go down by stairsteps, but sometimes hit a landing at a plateau. If you see signs that food intake is becoming problematic you are looking defintely at the end stage UNLESS the POA intervenes with tube feedings and etc. and often even IF that is done, as tube feedings often lead to diarrhea which leads to bedsores which leads to sepsis and death.
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.
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Alpenglow33 Feb 2023
Thanks. She is often refusing food but sometimes accepts finger foods or spoon feeding. It's just not reliable, so it's hard to say if we could get meds into her via pudding or whatever. Maybe they could get in a few initial doses that will make her more compliant from then on. Her advance directive says no tube feeding so we will abide by that.
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My mother started being confused and was falling a lot during her 90th year. At 91, she was mostly confined to her wheelchair and couldn’t do ADLs. At 92, she rarely got out of her bed and required a Hoyer lift. That was the way she languished until 95.5, when she died. She was in and out of hospice for 2.5 years. Her death was a blessing.
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againx100 Mar 2023
My goodness that is a horribly slow decline. It certainly was a blessing. It's just such a low quality of life. I would not wish that on anyone.
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My mom was starting to become “forgetful” during the pandemic (early ‘20) which made it hard to diagnose because appointments were scarce, she refused to leave the house to go to a medical setting and she lived in South Carolina and I was in NY. I did my best over FaceTime to help her with the daily grind of life. FF to the spring of 21 after we both had been vaccinated and I visited; she was in need of in-home care but refused, her memory was getting seriously bad and her neighborhood friends started helping out and I was paying all her bills online because she just couldn’t handle it anymore. I visited again for Christmas 21 and all she did was sleep. 2 weeks later she had a heart attack so I went down there and finally had her tested for dementia. They diagnosed her as moderate, took away her driving privileges (taking away her keys was trial by fire for me to say the least), I moved in and eventually got her settled into an ALF. Her short term memory was totally shot by June of 22 and she was starting to lose her long term by the fall of 22. She had a stroke at the beginning of December and eventually succumbed on January 19th, 23 after rehab were she kept asking me who I was, and 1 week of hospice at her ALF (DNR with no feeding tube, and I respected her directives). The timeline was about 2.5-3 years, YMMV because its such a tricky disease that has zero mercy and no cure. Good luck 🙂
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yungstdaughter Feb 2023
If you don't mind me asking, how old was your Mom when she passed? When she was diagnosed did they tell you if it was a specific disease (alzheimers, etc). Thank you
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I also could not get a firm diagnosis but suspect Vascular with my mom. Her decline was definitely stair steps. She was going to activities in the ALF and suddenly refused pills, baths and got very agitated. Decrease food intake (and yes we tried crushing in pudding and everything else). I called hospice in and they predicted 6 weeks (always just a guess) and she died 5 days later. I suspect she had a stroke in that last week. It took me completely by surprise that she passed that quickly.

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.
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My brother passed last year from glioblastoma which robbed him of his mind and much more. I live 1600 miles away and chose to put him him in hospice and an excellent nursing care facility after I decided that there was no point in treatment. I knew he’d be miserable and not understand why. He lived another 11 months. Living so far away I was concerned that I’d miss his passing. The nurses said they would call me as soon as they knew but there was no predicting. I suddenly got a call late last January from hospice saying he was non responsive. I flew out and he rallied a week or so later. Then his final downhill slide began a couple of weeks later. In the meantime I stayed on in the vicinity since I never knew when he’d die.

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.
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For medication issues, get a pill crusher and add to yogurt or applesauce & feed her.
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There are many different types of dementia and all of them are progressive. This means symptoms may be relatively mild at first but they get worse with time, usually over several years. These include problems with memory, thinking, problem-solving or language, and often changes in emotions, perception or behaviour.
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
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