How long does this stage last?

[Hihosilver123]

I know nobody can answer that question but would be interested to hear other people’s experiences.

Mum has had dementia for about 6 years now and has been slowly declining but still alert. She had a chest infection about 6 weeks ago and it’s led to a big decline. She’s now bed-bound as she gets too anxious if she’s got up. She has to be washed and is in nappies. She has to be fed but is still eating and drinking. She sleeps a lot but can answer simple question line ‘ would you like a cup of tea?’ Or ‘or are you comfy?’ She’s in a lovely home and is well cared for, but it’s all a bit miserable and I hope it doesn’t go on too long for her sake.

My mum has been in bed full-time and unable to feed herself for getting on for four years now. So it could be a while.

Edited to add: My feeling is that this is not typical.

For us it was about six months. Sorry it’s so tough

Too long unfortunately, we are going on just over a year now.

Four years for my dad.

Oh wow - four years. That is way too long. Hopefully she’ll slip away before that. She’s 90.

DMIL lasted around 2.5 months from catching Covid and becoming bedridden.

It was different though as some days she would only have a couple of teaspoons of liquid and it had been over 5 years from diagnosis. I understand that with Vascular Dementia the patient isn't usually expected to last over 5 years and 2 years from moving into a Care Home. DMIL lasted just over both of those.

My prayers are with you

With my aunt it was three years but she was a decade younger than your mum.

My stepdad was diagnosed several years ago ended up in a home 3 years ago having declined significantly. Now he is bed bound, cannot swallow and is not expected to live more than a few more days. It’s an awful end to his life :(

My mum has been unable to talk for 3yrs now, unable to walk for nearly 2yrs (forgot how) , doubly incontinent & unable to feed herself for 4yrs
She was diagnosed with dementia just over 10yrs ago.
She's not going anywhere quickly
I moved her to her current care home 20mths ago after a terrible hospital stay which was traumatic and caused a big change (forgetting how to walk) in her condition.
When we moved her I thought she wouldn't last 6mths
She has since settled and stabilised in her current condition - put on weight (good thing), is calm, happy when you play her music but very hard to interact with otherwise. She's very smiley and generally in a good mood but hard to know what's going on in her mind now.
Shes just celebrated her 78th birthday which I never thought we'd see and she doesn't look like she going anywhere soon.

@soontobe60
Im sorry that sounds very hard.
My mum has been bed bound since contracting covid 12 months ago.
Now doubly incontinent, can't bear weight, feed herself etc says a few words sometimes but not in context. She's 85 and has had vascular dementia and alzheimers for about 14 years so took a long time to get to this stage no idea how long it will last, I think although she has her lost her strength and her faculities her heart is still strong.

it seems everyone is different my mum was diagnosed with both vascular dementia and alzheimers at 79years old by the time she was almost 81 she was doubly incontenant had forgotten how to walk and talk about the last four months of her life last month she was bedbound
it's a horrible horrible disease two years of it was more than enough my poor mum
Given tour mum is 90 it could be she passes away from something else
dementia def killed my mum the drs said everything was good for her age but sadly not her brain
thinking of anyone going through this it's awful

It's all mixed up with physical heath and disposition. She might be ill but even elderly people get ill and pull through. If she's compliant and sort of going with it and eating drinking, taking her medicine and has people around to look after her she might go for normal length of life which can be 80+ for a woman. If she loses the ability to eat and drink or is fighting against everything and very distressed, not least with changes to things like continence that can shorten life. It's absolutely horrible and so sending a hug x

Wow just re read and she's in her nineties... What a blooming trouper x must be a very strong lady.

My mum had vascular dementia diagnosed in 2015 but we had noticed changes in 2012. We think that after she broke her wrist and had to have a small operation - she started to deteriorate quite quickly.

In 2019 she fell forwards
and broke (smashed to smithereens) her knee cap. When the ambulance arrived they pulled my mum up to see if she could bear weight, which she did. So they left saying she was just bruised. The next day her knee was the size of a football. Again, paramedics came and said that she was weight bearing so they left her again. But mum could not stand up without being physically pulled up and supported. The following day the GP came to see her leg - I was there when he called an ambulance and said that the patient needed it within the hour. Seventeen hours later the ambulance came - she never walked again. She also couldn't remember that she couldn't walk and would try to get out of bed leading to lots of falls.

She was bed bound for 4 years before she died. She was 92 and skeletal. It's a very cruel condition in my opinion. Fortunately, she was happy and smiling until about six weeks before she died, when she had started to sleep for most of the day and night.

Whenever I can't recall the words I want to say, common words which I use all the time, I worry that I will end up like mum - which is one of the signs we thought was the beginning. She would get so inexplicably cross with herself for forgetting, for example, the word 'watch' which she had to say was 'the little clock on your wrist'.

It's just so sad to watch a loved one like that.

Oh gosh I'm so sorry it's so hard watching your loved ones suffer. Sending strength to all 💛

MIL has had it a couple of years and it's getting noticeably worse. She's only 75. I'm so worried this is going to last for years and years 😔

Thank you everyone. It’s a cruel disease. We’ve been asked by the home to remove some of her furniture from her room so they can put in a hoist. Feels like a point of no return, and very sad, as she loved having her own furniture and bits and bobs in her room 😞

Because of mums hoist & special chair floor space in her room has to be kept clear so we've gone a bit mad with the walls.
She has so many framed photos (loads - all labelled so carers know who is who) , some paintings, bunting with her name on in SAfrican fabric (where she grew up), she has pictures by grand kids stuck to her wardrobe and plants & flowers on the window sill.
She's also got great blankets and cushions for her bed - nothing fancy (supermarket/dunelm) but nice and cheerful.
You just need to find other ways to make it special & hers.

Oh that’s a nice idea. Off to Dunhelm I go!

Mum now has a UTI. Doc has been and prescribed antibiotics. She’ll no doubt perk up again and onwards we go. It’s so long and drawn out. Awful.