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

So sorry to hear this OP I was a nurse for years. Generally they stop eating and then die of related complications. Usually chest infections.
Make sure there is a TEP....treatment escalation plan in place. These dictate how the family would like the end to be I.e no resuscitation, no antibiotics or hospital admission and yes to painkillers. That way life cannot be extended for months or years.
I made sure my son was aware of my wishes and I will do mine shortly. I'm 60 and don't want any interventions.

My mum was in a care home. The incontinence service provided pads/pants. The staff took them for other patients who needed them but didn't have them provided...so my mother was left mostly unchanged. My dad started counting the pads at every visit, twice a day, but he couldn't stop the thefts. I hope that's not happening to your DM.

Just echoing others and sending a handhold @stirling your mum shouldn't be drenched in urine, how is her skin and has she ever had a continence assessment?

My grandma stopped eating or drinking much of anything, then had a series of strokes. She slipped away in the end.

I have an advance decision in place already and it says that once I lose capacity palliative meds and comfort measures only. No meds for blood pressure, no antibiotics, max pain relief. I don't want my family to watch me waste away without any dignity. I hope you have an advance care plan or ReSPECT in place for her. Hugs.

These posts are so sad to read. You wouldn't allow an animal to suffer like this; when my beloved elderly dog died recently we knew when she had had enough and she was put to sleep peacefully and painlessly, before she lost all her dignity.
I hope the law on assisted dying for humans changes soon.

My MIL died when her brain deteriorated to the point where it could no longer send the messages that her body needed to keep her alive. Right up to the and she was eating well, while showing no other real signs of awareness of anything. It would have been easier all round if she'd stopped eating, as many do.

@RosesAndHellebores C+P from livescience.com

Although Alzheimer's disease shortens people's life spans, it is usually not the direct cause of a person's death, according to the Alzheimer's Society, a charity in the United Kingdom for people with dementia. Rather, people die from complications from the illness, such as infections or blood clots.

Same as many others OP, DF started vomiting something horrible (never found out what that was) but his muscles were so weak he couldn’t clearing so he got pneumonia. It was successfully treated at first but then SALT said his swallow had gone so they stopped treatment and he passed away a few days later from the pneumonia. He was comfortable in hospital and it was after years of decline and he was left unable to really speak, recognise people, keep himself clean etc.

Thank you OP for starting this thread. 💐to all of you with loved ones who have died from/with or are currently living with dementia. MIL is 87 & diagnosed just over 1 year ago. In reality I think it probably started quite a few years back.

By the time she received her diagnosis, the consultant said she had moderate dementia. I had been gently saying to DH for at least 18 months prior to diagnosis that I had concerns but I think it was harder for him to acknowledge. She has continence issues & her appetite is noticeably reduced.
She lives in sheltered housing site for over 55's but there's no warden or similar DH is an only child & we live some distance away (& for a variety of reasons, cannot move to be closer too her) FIL died almost 17 years ago so there is no one else on hand who can help out.
Following a fall that put her in hospital & an assessment by social care, we arranged live in care. Social care would only offer 4 calls per day but with us being so far away and her already having had several falls, we wanted to have peace of mind that she wouldn't be on her own and would always have someone to help as well as be company for her.
She has a savings bond specifically set up to pay for care but there's only about 6 months or so of funds left to carry on paying for a live in arrangement. She is still aware enough to insist she wants to remain in her own home & it's breaking our hearts to have to consider putting her into a home but the reality is we will have to start the process of selling her house and are mindful this might not happen quickly. I feel very torn in wanting her dementia to progress quicker so that she isn't cognisant of what's going on but equally mindful, that it's an awful thing to wish for, especially for DH.
Having watched DFIL suffer with brain injury induced dementia for over 5 years, it was a living hell. 😪

@AStar98 it says usually. Because usually people with alzheimers have or develop comorbidities. Not all do.

Just as an aside. If the person with alzheimers live alone, the house need not be sold. Consideration could be given to letting it or selling and buying an investment property to let to raise the funds for care. This helps protect some of the capital.

My grandma died of her underlying heart disease. She'd been in a care home 3 months from when she stopped being able to stand (as in her brain was unable to send messages to her legs). She had dementia almost 10 yrs.

My DD had pneumonia, he stopped eating and drinking so they sent him to a nursing home where they did end of life care. He came off all drips and still took two weeks to go. Two weeks without water
He wasn't aware of much after a few days. He had repeatedly said he wanted to go, he hated being incontinent etc. Alziemers is a horrible, horrible thing, sorry for anyone going through this.

My friend's husband has had dementia for the last 10 years or so. He has never known. He has gone into a sharp decline recently and is sleeping most of the day and not even awake long enough for a drink. He is comfortable and not in any pain and there are meds ready in case he needs them.

Until covid, he was entertaining everyone with his life stories - sort of like groundhog day where you have the same conversation slightly differently each day. Since then he hasn't remembered much but has been happy and easy entertained, as long as it is within his routine.

Hopefully he will pass away quietly soon 🤞

Chest infections. It runs in my family unfortunately, I'm hoping euthanasia comes around before it's my turn.

My mum died due to aspirating food. Sorry op.

Please don’t feel guilty for wishing that @stirling - it’s ok to wish for the best for your loved ones both in life, and in death. It’s the only thing we’re all guaranteed in life and I think we’d all say we’d rather go in the most comfortable and peaceful way possible.

Im so sorry to you all who have posted your experiences on this thread. I have been there myself and feel like to lose your loved one to Alzheimer’s/dementia before losing them physically is the cruelest of things.

My dad had what was probably a ‘good’ end to dementia, relatively speaking. Diagnosed in 2019 and went quite quickly downhill in covid, but still living at home at the end of 2021. He woke one morning and was sort of locked in - no reaction to anything. He died three weeks later. They never did really establish what happened, but suspected some kind of angina. I’m angry and sad that he ever went through any kind of dementia, but relieved that he didn’t suffer for a long long time. Lots of hugs and love, op.

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.

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.

@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.

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.

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.

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.