Follow
Share

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.

This question has been closed for answers. Ask a New Question.
If Mom has high BP, severe edema, and won't take pills, then she probably has heart failure, too. That's what will likely be her end, although she may well have a stroke first.

Be sure you have a DNR or POLST on her.
Helpful Answer (2)
Report

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 🙂
Helpful Answer (5)
Report
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
(0)
Report
Alpenglow33: My sister in law was diagnosed with Alzheimer's in 2017. She unfortunately contracted the Novel Coronavirus, which claimed her life in 2020.
Helpful Answer (1)
Report

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
Helpful Answer (3)
Report

For medication issues, get a pill crusher and add to yogurt or applesauce & feed her.
Helpful Answer (4)
Report

My mom had mild dementia and was living alone until my older sister was murdered by my mom's grandson(my sister's youngest son). My mom came to live with us and died about 9 months later, although she died of heart failure. She was forgetful but did not become really confused until her last 2 months. She needed help with ADLs and I think she also may have had a UTI that was missed, somehow. Get her on hospice care as quickly as you can as it will help you and her. My mom fell and ended up dying in a rehab facility. It does seem like a fast progression in your mom's case but I am not a M.D. so I would hesitate to make any type of statement on the pace of the stages. I know how heartbreaking it is to watch a loved one deal with dementia. I hope you find some help soon
Helpful Answer (2)
Report

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.
Helpful Answer (10)
Report
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.
(1)
Report
I’d say with my dad we could see it progressing for about 10 years before he was actually diagnosed with vascular dementia.. His doc explained to me that it progresses in “steps” where there will be a sudden worsening. When he could absolutely no longer live alone and he came to stay with me, he only lived for about 9 more months. He did take a fall and had a dramatic worsening after that as we think he hit his head and the doc said he had evidence of older brain bleeds as well. The doctors told me different types of dementia progress differently. When I could no longer get him in and out of bed the doctor finally gave the go ahead for hospice and he only lived 2 weeks past that point.
Helpful Answer (0)
Report

You may want to proceed asap with hospice evaluation and admit to hospice if appropriate . Hospice can not only care for her but should be a great help to the family going forward. You could also call 911 and have her transported to an ER for further assessment and, discuss options going forward.
Helpful Answer (0)
Report

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.
Helpful Answer (7)
Report

Hi Alpenglow, you've come to the right place many of us have stories to share.
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
Helpful Answer (1)
Report

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.
Helpful Answer (4)
Report

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.
Helpful Answer (5)
Report
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.
(2)
Report
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.
Helpful Answer (4)
Report

Try crushing pills and putting them in small amount of ice cream or something she really likes. We did this with my sister and it worked well. Gave her one spoon of without and one with and one without. Sometimes just the one with. Pills should not be slow release. Buspirone was an excellent source for depression and anxiety with racking up the dose over time to highest. Also crushed tylenol without coating!
Helpful Answer (1)
Report

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.
Helpful Answer (8)
Report

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.
Helpful Answer (6)
Report
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.
(2)
Report
See 1 more reply
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter