Dementia - how long can you live like this?

[tomissmymum]

Realistically … though I think this will be difficult for anyone to answer really..

Mum has young/early onset dementia (FTD - same as Bruce Willis) diagnosed last June. Theh think she’s had it at least 6 years.

She’s not able to do anything for herself - at all, needs full assistance with all activities of daily living. Can’t have a conversation and very little eye contact or response at all, even if you walk in the room. Sometimes a hint of a smile or recognition but nothing else. Mobility is shot as well, she can walk but not well at all - shuffling/stooped and falls a lot.

She’s also having seizures - on meds but an agreement she won’t be taken to hospital if she has them, and not for resus.

I went to see her yesterday and most of the visit her eyes were shut, and non responsive.

They said at diagnosis no one can put a time scale on it but this time last year she could still talk, dress, wash, feed herself and go to loo etc.

I’m scared I won’t see her again. I realise I’m probably never going to get another real interaction with her now, they said once something’s gone it won’t come back but I’m scared. I don’t want to lose my mum.

MIL has this too, probably for around the same amount of time as your mum, 6 years ish, more thank likely longer, but hard to say as they initially thought it was epilepsy.
She is also at the stage where she can't do anything herself, shuffles along, very stooped, can't stand up unaided. Can't talk and just makes noises or the odd word that she struggles with. It just seems like a long drawn out 'existence' for her, it's no life for anyone. It's a horrible, horrible disease

The shitty sad answer is- years and years and years. Decade and more even.

unless like us, you have experience of dementia, you don’t realise it’s probably the cruelest of all diseases.

my grandmother had it and it lasted about 20 years with the final 10 being sat in a chair with no idea who anyone or herself was and being able to do anything at all.

unfortunately my dad has it, he’s 3 years in and it’s already awful and we expect it will be like this for very many years to come.

My DM had it from her very early 80s until she died at 97, having had advanced dementia (doubly incontinent, no clue about anything, not knowing any of her family, etc.) for several years.

But a friend’s neighbour had a ‘galloping’ variety - she was only 71 IIRC when it started and died just a few years later. To be brutally honest, I have come to think that the galloping variety is more merciful. Advanced dementia is IMO a fate a lot worse than death. I know my DM’s former self would have been utterly appalled at what she’d become.

That’s kind of what mum’s consultants said, they thought it would be a fast decline with mum and that for mum’s sake that would be a small blessing. It is hell, she seems peaceful and contented but then none of us know what’s in her mind. She looked at me yesterday but I’ve no idea if she knew me or if she was just staring straight through me.

She’s relatively young (under 70) so she doesn’t really have any other medical issues going on, ‘just’ dementia.

It’s an absolute bastard of a disease. I figured the last time I saw her before yesterday, when she gave me a hug and told me she liked my top, I would probably never get that again, but I never imagined it to be so fast. It’s just hellish.

My mum was diagnosed 2017 and died last year from sepsis caused by pneumonia
The antibiotics weren't working and we said no more treatment
She was 72

Heartbreaking to hear of all these youngish women getting early onset dementia. It's been linked to the decline of HRT in the last 20 years. A flawed study 20 odd years ago linked it with breast cancer and scared everyone off but new evidence suggests thats not the case and the benefits far far far outweigh the disadvantages. Said benefits include lower risks of dementia. Doctors receive hardly any training in it. Thankingfully, it's slowing beginning to change and HRT starting to come back. Too late for me though.

Also, I'm in favour of euthanasia. If i'm still alive when im 80 i'm going to Dignitas. There'll be no long 10 year slow decline for me. A big family party for my 80th then quietly off to Dignitas a couple of weeks later.

10 years progression to end. Usually diagnosed about 3-4 yrs in so factor that. Hope for a nice bout of pneumonia. The flashes of recognition never stop though. Worth it for those. Xx

It’s my biggest fear for mum, that this will never end. It certainly feels like it won’t.

just. Fucking. Heartbreaking.

Honestly I'm petrified, and thought I was being ridiculous until I spoke to my cousin and he admitted he worries too
My Nan (mums side) and mum both had dementia. My uncle (mums brother) has just been diagnosed too. Although I don't know if that's linked because he was a boxer with a lot of head injuries
My dad said mum didn't have HRT, I'm planning to

It's such an awful disease. Ive no words of wisdom but lots of sympathy for all those who have loved ones who have it.

So sorry to hear this. My mum had early dementia from around age 40 maybe earlier, talked to herself, couldn’t do anything. Of course no one knew what it was in 1975. Had a stooping posture. In bed most of the time, really bad and heartbreaking. She still knew me, and I think she felt guilt.
she died after a fall down the stairs and then caught pneumonia. Of course it could have been something else, but I am pretty sure.

My dad was diagnosed at 56. We were told that the younger the person is at diagnosis, the faster the progression can be. We think he was showing symptoms at least six years ahead of his offiical diagnosis and he died at the age of 65. So for him he had about 15 years living with dementia, it was pneumonia that finally got him in the end.
He had reached the point of being bedbound and unable to communicate or be aware if his surroundings. He was having difficulties swallowing and would get infections due to liquids getting into his lungs.
Its a really difficult illness. The best way a doctor described it to us was as having 'two goodbyes', you grieve for the person that you love as theyre not there anymore and then theres an awful long drawn out limbo period where the person is there in body only and you can only properly grieve once theyve passed away.
Try to mind yourselves and we found support groups really helpful as unless youve gone through it its a very hard thing to understand.

Once the person is off their feet, you're often looking at a year or two, possibly a bit more, but at an advanced age and immobile with dementia a combination of increasingly weak swallow and the inevitable pneumonia is a killer.

I’m praying DF goes quickly. He’s been in a dementia home for a year, the other residents are worse than him. Mostly immobile and just sit hunched and blank all day. He at least still recognises me, but not DS or DH.
DSis has POA and hasn’t sorted the DNAR despite repeated pleas.
I have an advanced directive so that if I end up in a home they won’t give me any antibiotics or anything, just let an infection kill me off quickly. Both DGM were in homes with dementia & DF always said he’d kill himself before he ended up like that, he just didn’t know he was becoming like that and now it’s too late.
Such a cruel, cruel disease.
So sorry for everyone else suffering through this.

I had never thought of that. My mum’s GP said she thought it would be the ECT my mum had a long time ago. Thought it probably caused brain damage of some sort. I dunno. It hurts like hell. Mum never took HRT either and I’m not sure what age she went through the menopause.

I meant to write that she’s under 60, she was also 56 at diagnosis but looking back she hasn’t been right since at least 2016. Her Facebook posts stop at 2015-16.

They told me when she was diagnosed there was a chance it was genetic but no-one else in the family has ever had it, just the vascular sort.

It was mum’s empathy that went first and for the longest period I thought I’d done something wrong and that she didn’t love me anymore. That sounds childish but it was so hard. Or that she was having some sort of mental breakdown and if I did the right things I could fix it for her. So bloody hard.

I miss her company so dreadfully. I go to ring her a dozen times a day. I hate knowing too that the place she’s in will probably be her last home, as kind as they are. They have a quiet room with a punch bag in the corner and I felt like asking if the punch bag is for relatives when you’re angry at the universe!

@Cadburysucks that must have been hellish in the 70s , at least we were able to get scans and stuff done (eventually, took long enough) that confirmed it.

I have thought about doing that for myself just in case - getting something written down that if I end up going the same way by mum’s age (god forbid, I have a younger sister who will need lifelong care herself) that I’d not want things dragged out.

I’m so sorry for everyone else that’s in this situation too .

My Mother was diagnosed 2 years ago with vascular dementia. In the last 6 months she has gone downhill. I feel that I have already lost my Mum and that we are already grieving for her.

Oh my love I know.
Dementia is an horrendous beast. It’s path different for each victim.
Please treasure those moments when your mum knows you. Tell her you love her. I have trod this path and it is so painful. My heart and that of all those who have experienced this is with you. Xx

It's such a horrible cruel disease. My mum had it for 7 years.

My thoughts go out to all of you having to deal with this.

I don't think the suggestion of a causal link between dementia and HRT is correct, the science shows no link between taking HRT and avoiding dementia, for instance

https://www.alzheimers.org.uk/about-dementia/risk-factors-and-prevention/hormones-and-dementia#:~:text=Hormone%20replacement%20therapy&text=For%20example%2C%20some%20studies%20of,may%20even%20increase%20dementia%20risk.

My sympathies, OP and all others affected by this horrible disease. My ex was diagnosed in her late 50s, just a year after we split up after 25 years together and two children. I'll never know if her vile behaviour to me (and one of our children) in the latter years was due to dementia.

Anyway, we are apart but living close and I am her main carer. There is no one else. I can't abandon her but tbh this isn't the fresh start I had in mind. She is suffering so much. Sometimes suicidal and of course I keep talking her out of it but if I were her, frankly, I would.

It's really hard not knowing how long this will go on. I worry she may outlive me.

Someone I know was still alive - well, not dead is more accurate - six years into being bedbound.

Horrifyingly, the excellent nursing she had (not NHS) cured the other health problems that could have released her.

Memories - the torments of Auschwitz and being interrogated in WWII - mixed with hallucinations. Her terror lasted five of those six years.

All the surviving family have DNR.

My DM was on HRT for many years, but as per my pp she still got dementia (Alzheimer’s) that dragged on and on. TBH I think the care home staff had started to think she’d go on for ever (she was there for 8 years from 89) - I certainly had.

My FiL had dementia, too. So dh and I have both added paragraphs to our Health and Welfare powers of attorney (for dds) to state that ‘If I should develop dementia, or any other condition where I am unable both to care for myself, and speak with full mental capacity for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

Oh that’s terrible to be trapped with memories like that but to not be able to reaps on with them I imagine. That’s dreadful 😔. Thankfully with mum they stuck her on something for dealing with trauma memories. I think it’s called prozazoin or something. Don’t know if she’s still got them in her mind and just can’t communicate them. She doesn’t appear to though. This time last here she was hallucinating a lot and very angry all the time and that’s mostly stopped.

I know my grandmother on my father’s side had Alzheimer’s a good 16-20 years but somehow she never lost her recognition of very close family, and long term memory of her parents, sister, childhood, and her speech always remained intact until days before she went. She was 90+ though and in the end I think it was covid or pneumonia.

I miss her humour (my mum’s), we used to talk entirely in film and TV quotes. She was always laughing. It just seems wrong and unfair that anyone‘a life should end this way - not even recognising your own daughters - and the thought that it could carry on for years is terrifying, as much as I don’t want my mum to go, she already has, a long time ago.

@Supersimkin2 , IMO a DNR is not enough. You need to request ‘no striving to keep alive’, as per my post on what to add to a Health and Welfare P of A.

My DM had no such instructions in hers, but once she was over 90 with at least fairly advanced dementia, we made sure the care home staff knew that we did not consider it in her best interests to be sent back and forth to hospital (in any case a terrible place for anyone with dementia), pumped full of antibiotics etc., to keep her going, just for the sake of prolonging at all costs a life with virtually zero quality, which she wasn’t enjoying at all anyway.