How do dementia patients eventually die?

[stirling]

Its on my mind a lot. DM is in her fourth year and at the stage where she's drenched in urine, cannot speak a single coherent sentence, cries, depressed, but her blood tests are fine.

I'm wondering if you have any experience to share.
Thank you

I know exactly what you mean. Mum has dementia and I seriously considered not booking her flu jab and covid booster in the hope she would be dared thr worst of alzheimer's. She's still at the stage where she doesn't think there is anything wrong with her because she forgets the mess she gets into when she tries to do something/ forgets that she forgets and if she can't remember things like seeing the consultant and the brain scan they can't have happened so why is everyone making these things up. Clearly we are trying to convince people she is mad so she gets locked away.

Thank you to the op for asking this question. My Mum was diagnosed with Alzheimers 3 years ago although the signs were there probably at least 2 yrs before. We are now at the stage where I don't think she knows who I am and hardly speaks. My Dad cares for her at home although he is not in the best of health. Thank you for all being so open and honest in your posts about what lies ahead. I feel that I have already lost my Mum and we are having to watch her slowly decline.

@countrygirl99 "Clearly we are trying to convince people she is mad so she gets locked away."

Whoever it is in the council/NHS that would have to pay is very skilled at avoiding that judgment being made.

My DM had not said a single word to us during many visits even when our DCs, her DGCs, visited from abroad. But when someone came to do an assessment to increase the financial contributions she miraculously said a word out loud - so far as I'm aware the last time she ever (supposedly) spoke. And it proved impossible to get that decision re-assessed.

@filka social services and the GP have the measure of mum even though she is still capable of sounding quite with it for short periods. You would have been quite envious of her antarctic cruise that she was telling me about last week if you didn't know that the nearest she has been is watching David Attenborough on TV. She was very eloquent about the penguins, seals and whales they saw. If only all her delusions were so pleasant. Unfortunately she convinces herself that DB has big family meals and parties she isn't invited to and gets really vicious about it.

So we are 2 years in with the dementia (DF). Now double incontinent, unable to walk, mumbles so we are no longer able to understand. Never know if he knows us to be honest. Has to be spoon fed as he can't judge where his hand meets his mouth. Always has to clear throat when eating.

Noticed someone mentioned that their relative had an issue with a patterned rug and was always trying to pick something up, my DF is always doing that along with the fact that he is always trying to communicate with his hallucinations.

It's devastating, sorry to hear that so many are going through this.

We are two years in a home and well to be bluntly awaiting their death. She is in pain, has no waking joy, wears nothing from the waist down except a nappy and most days lies on her back staring at the ceiling as her back is developing pressure sores. Grim

To all of you on this thread who are suffering from a Loved one having dementia , my heart goes out to you. It’s the most fucking awful illness. It’s been described as death by a thousand cuts, and it truly is.

When my mum was in the thick of it, I often wished we could have 1 day of having her back, then have her die the following day, which was obviously never going to happen, but thats the thought processes you have when you’re in that position.

Just to say that PEG feeding is unusual for dementia in the UK as there's good evidence that it doesn't prolong life or improve quality of life. Also, it's a medical treatment- it can be stopped or withdrawn just like any other treatment. Don't be afraid to open that discussion up.

We're still battling with the care home team to stop them treating Mum with antibiotics. We have to have the same discussion over and over again, which is bloody distressing. They refuse to have the discussion unless the GP is involved - reasonable in itself- but then don't implement what the GP says. My sister just got the CQC involved. No doubt they think we are bitches but I've stopped caring what they think of us - the important thing is that they STOP propping Mum's life up for no bloody reason at all and contrary to the law.

I’m so sorry dementia is just utterly horrible. My MIL had a massive heart attack in her sleep. She didn’t know anything about it, and was probably the best way to go. She could barely walk, doubly incontinent and lived in a 5 minute bubble where she’d get agitated and distressed all the time.Her life near the end was a misery.

Oddly on her death certificate it’s not mentioned anywhere. Cause of death is heart failure and diabetes. I think it should have been mentioned for future generations but maybe that’s just me?

So sorry for your DM and you.

It doesn't always end as you expect.

DMIL contracted Covid-19 a couple of months ago and never really recovered.

She went from being very active, albeit with Dementia to being in a comatose state for most of the day.

My dad lasted about 7 years with vascular dementia.

He was non verbal and double incontinent for the last 18 months.

He got gradually more frail with UTIs which led to derilium and was bedridden for the last 3-4 weeks.

As I understand it the brain function gradually decreases until it shuts down completely.

A dementia specialist I spoke to said that even though he couldn't speak or respond that brain scans showed that dementia people's brains register activity when loved ones speak to them. I thought that was lovely and comforting. I think he was aware of us snd comforted by us right up to the end.

What you are facing is so hard.

After a few years since my dear dad died I can say that fond memories of him before the dementia took hold are coming back and the memories of that difficult time are fading.

I wish you well xxx

@PermanentTemporary "the important thing is that they STOP propping Mum's life up for no bloody reason at all"

But the care home has a very good reason - money, money, money😡

My mil was very similar. She died quietly of a heart attack one night. It was a relief to everyone really, that she didn't have to suffer anymore 🙁

@system2319 'Noticed someone mentioned that their relative had an issue with a patterned rug and was always trying to pick something up, my DF is always doing that along with the fact that he is always trying to communicate with his hallucinations.'

Mum had a social services check whilst she was in her care home to check she was settling in. The lady from social service recommended the care home change their carpets to plain ones. Which they had started to do - two more rooms to get done. People with dementia can see things almost in 3D when they're not. So a black or dark pattern would look like a 3D maze or, in the case of a dark mat on a carpet, it would look like a hole. So either the patient becomes obsessed with 'grabbing' the snakes or flowers or whatever the '3D' pattern makes in their brain or they won't cross it because they think they'll fall into it.

Mum's sheltered housing scheme had plain carpet throughout for that reason.

“After a few years since my dear dad died I can say that fond memories of him before the dementia took hold are coming back and the memories of that difficult time are fading”

This is good to hear. I got rid of any photos of my grandparents looking ill, I just don’t want to remember those years.

My mum died in May of something completely unrelated to her long term dementia. She basically had gastric ulcers and had a huge bleed. The dementia may have had an impact though as she fought against the diagnosis and tried to hide many of her problems. I think that included her physical health issues.

@LondonJax Thank you, I found that very informative. I will definitely raise this with the care home. Thanks again.

It's very sad, my DM can hardly talk or stay awake and is in pain.

My dad passed quickly but this is a sad end to anyones life

It's absolutely inhumane, to allow once independent people to lose their sense of who they are, to be smearing excrement on walls, to be in ''Nappies'' again, and to be aggressive with one's loved ones.
NO one, no one would want this.

Humane Euthanasia needs to be an option. In UK, locally, no travelling to places where it is legal.

If a dog was suffering cognitive decline, soiling and aggressive, depressed and not able to enjoy life, he or she would be eased to the afterlife by a kindly vet.

I hope this becomes law, then we can ''Opt'' for Euthanasia in certain circumstances for ourselves.

Dementia is what people fear most.
Loss of 'Ourselves'.