Knowing what to expect with advanced dementia

[Juliancoped]

I am just looking for stories of what happened for others.

My mother in law is 93 and has been in a nursing home for over a year now, her dementia has advanced so she seems to be bed ridden most of the time and on a limited diet. She does not communicate or talk at all and has to have pads etc.

How long can this stage last for I suppose I am trying to find out, can it be years like this, it's awful seeing her with no dignity of comprehension of even who we are. I just want to know how this will progress. it's so awful she doesn't recognise anything.

I’m not an expert but my GMIL was like like this for years, I’m afraid. She died at the bitter end of dementia when the body forgets how to swallow, 10 years after she first went to a nursing home.

I’m sorry for you and her and all concerned. It’s not nice.

How old was she smed ?

That sounds like such a hard situation. When we were caring for my nan she was like that towards the end.
This website has some blogs and stuff from carers plus they do training for carers of people with dementia
dementiacarers.org.uk/virtual-carers-centre/carer-to-carer/

Sorry @Juliancopedmissed your question. She went into the home at 85 and died age 95.

We live a long way away so saw her very irregularly so I can’t remember the exact decline; she was hospitalised several times a year, typically with UTIs. Certainly by four years before she’d died she had lost all language (I can date that due to visiting with one of my newborns) apart from being able to make one particular noise (a shhh sound). The home was excellent at getting her up and out of bed though; even in the last six months (again, I can date this to the birth of one of my children) they bought a sort of reclining wheelchair/armchair which allowed her to be (liquid) fed safely.

But you’re right; it’s no life. Some people seem to think that dementia is “living in their own little world, a bit gaga but at least they’re happy in theirselves” (direct quote from my mum). It was nothing like that for most of that ten years.

I worked in a care home, it can be a long slow process I hate to say.

The usual outcome is some sort of infection - a UTI, infected bed/pressure sore, pneumonia and then things tend to progress very suddenly and rapidly.

It's a horribly cruel condition

Thanks. It's so awful not being able to see her properly and seeing how she really is. You just cannot know from a whatsapp video chat.

I'm sorry, it's awful seeing them like that with no quality of life.

My DM was diagnosed with Alzheimer's at 79. She muddled along in her own home being a bit dotty for a couple of years, but took a very steep decline aged 82 and had to go into specialist residential care. She was still chatting then (she was such a clown) and semi-mobile with a walker.

She'd been there for 4 months when she suddenly collapsed with sepsis on 26th April, and died on 24th May. The time when she was non-verbal, doubly incontinent and having difficulty swallowing was just 4 weeks.

I'm sure she would have been delighted that the misery and indignity was so short lived, I remember assuring the hospital that mum would want no further treatment or intervention, and she had a DNR in place.

Sadly it's different for everyone, it's not the dementia that kills them but a secondary infection like urosepsis (as my DM had), pneumonia, flu, coronavirus etc. As long as they don't have any infections I think they can continue indefinitely.

It's cruel isn't it. I hope your MIL can find some peace soon.