How do dementia patients eventually die?

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'.

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

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

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.

“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.

@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.

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 🙁

@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 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

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.

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?

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.

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.

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

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.

@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.

@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.

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.

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.

Just a note to add, that you don't need to be ill to stop treating. If you have an advance directive, you can say if in the event of heart attack etc, I don't want to be resuscitated. DM has this, she was 90, with mild heart issues, but nothing terminal, but refused most treatments, including stents, and visits to hospital. She refused Covid jab. She was ready to go. When she caught Covid she was not taken to hospital but received palliative care in her care home.

My DM didn't have dementia, but went into a nursing home after she had an aneurism that left her unable to walk. A year later she had a mini stroke and ended up bed-ridden and tube-fed. The tube feeding went on for about 3-4 years with the nursing home manager saying there was nothing they could do about her terrible quality of life (because it might stop the £££ coming in - cynical, moi?).

We moved her to another home and soon after that I happened to bump into her doctor. He said why don't you just write a letter saying that if her feeding tube comes out, don't put it back in. I had no idea I could do this, but wrote the letter thinking it would be months. Why couldn't the other home have told me this?? Even if you don't have a Power of Attorney, they do have to take into consideration the wishes of the family.

A few weeks later I got a phone call, confirmed my wishes and flew home from abroad. After about 10 days she just slipped way while I was with her reading a book aloud. Such a huge relief after so many terrible years.

The strange thing is that where I live the medical facilities would be regarded as "relatively backward" - but this would never happen here, the extent of artificial feeding etc. just would never even start, and nature would take its course when it should.

I wholeheartedly agree with you. I sign every petition I can in regard to this. My DF has been a living zombie for the last two years-diagnosed over 5 years ago - his every whim cared for by my mother. His condition affects the whole family as we all have to be on a rota to look after him to give mum time off and accommodate every appointment they both have, which is many as she now can't manage to drive him anywhere alone. He has expressed a wish to die a few more than ago but at the moment medication has stabilised him. The stability never lasts and in the meantime he is still prescribed heart medication (I feel awful saying this), but I just wonder why? Doubly incontinent. It would be so much kinder to let him go of a heart attack than be reduced to peg feeding which is the likely end scenario. He has Parkinson's and Lewy Body Dementia. Bloody awful.

@womaninatightspot I truly think euthanasia will be legal within 10 years, for ultimately pragmatic reasons. Sorry to do the 'I know someone who knows someone', but then 10 year predicition is from a friend who works in healthcare policy. It will very restrictive, like cannabis is now, and once people realize society didn't collapse it will become a more sensible policy. But what I wish the 'life at any cost' zealots would own up to is the fact that their fanatacism is taking quality years AWAY from people who would otherwise have had them, because like I say, should I get the diagnosis before proper legal protocols are in place, I'll be forced to act sooner than I otherwise would have. And I'm not depressed in the slightest. Other than anxiety, I rather enjoy my life.

After my cousin died of a brain tumour I immediately completed an advance directive online, printed it, had it witnessed and posted it to my GP for placing on my records. Very easy to do.

oh - I wouldn’t feel bad for wanting a swift end. It’s the most merciful thing for everyone. If I am in the same place as my dad was, it’s exactly what I would wish for myself and my family too.