Late stage dementia - suddenly not walking

[Candleabra]

My mum has advanced dementia and is now suddenly unable to walk.
She is non verbal and requires 24 hour care (she's in a care home). Eating and drinking is generally ok, but now requires a lot of input from the staff.
I know this is part of the disease progression, but it has still been a shock.
Has anyone got any advice for what happens next? Will she be assessed by a doctor?

I wish you strength candelabra, I’ve been down that road. You are there close to her and that’s the main thing.

I didn't see your OP but having seen loved ones go through what you're describing OP my heart goes out to you, it is incredibly difficult to witness. My DH is a dementia specialist nurse and he sees this type of decline all too often, such a sad thing to see a family member go through. Sending you strength and hugs! .

My Dad was declining due to multiple myeloma, and having contracted the flu. He lost mobility very quickly and became confused. He had a swallowing assessment and was put on thickened liquids. He refused to eat them. I don't blame him really, they looked actually quite disgusting. I think not eating was the beginning of his even more rapid decline.

It is hard to know how to help. We tried giving him sips of a smoothie but he coughed and the nurses told us off.

In the end I think he decided enough was enough.

I am sorry your Dad is so ill. Hang in there.

I went to see mum today and she looked terrible. She’s in bed now, so tiny and frail, all curled up. Not eating. But drinking a little (though often it just falls out of her mouth).
No obvious illness/infection.
Vital signs all stable though.

She could live bed bound for years and years - I know two people who did.

You only need a little bit of brain or a stump, not a brain, to keep the heart pumping and lungs breathing. It’s important skin and muscle is kept intact (more difficult than you think cos it decays).

Having seen people in that state, to me it’s chilling to think what’s going on in the head, but each to their own when it comes to prolonging that state.

What a strange comment @Supersimkin2. Think what the OP is going through before posting?

Unfortunately I think the poor OP knows better than us both what late stage dementia looks like. She asked how long it might last - I gave IRL examples.

Dementia's a horrible disease, and it's not kind to sugarcoat the cruel realities families have to face - let alone sidestep the medical and ethical decisions many people are forced into.

As you could see from my post up thread, I have been through the whole dementia thing with my father. No one is talking of sugaring this pill, or prolonging late stage dementia but a harsh post isn’t helpful for someone who is at the sharp end of it right now.

OP, I'm truly sorry.

@dane8 I really wasn’t referring to your post and I agree information is useful, albeit it can seem there is Never any good news with dementia. I really don’t want to be policing posts, but I felt Supersimkin’s post above was maybe rather tough reading for someone with a parent in late stage dementia.

I suspect we're all saying the same thing - that what the OP is going through is horrendous, and that we're all here to support her.

Agreed!

OP this is such a cruel disease because it causes huge deterioration in living without causing death. Torture to watch.

My mum became bed bound 7 months before her death. This coincided with her stopping eating and drinking. In the last 7 months her weight went into free fall and she only absorbed minute quantities of fluid. I feel utterly traumatised by those months.

I also feel a kind of trauma was brought on by witnessing my father’s decent into dementia, never mind having to manage every aspect of his life for 5 years.

This is what I’m worried about, just watching mum like this for months on end.
I looked back earlier over my posts (and on other threads) and I see now what the professionals did then, but I didn’t: that no matter how bad things seem, they always get worse.

Even now, I can’t see how mum can get any worse, but there must be more to come.

@whataboutbob

I also feel a kind of trauma was brought on by witnessing my father’s decent into dementia, never mind having to manage every aspect of his life for 5 years.

Yes I agree, this last six years have been hugely traumatic. The worst thing is the complete loss of the wonderful person my mum was. I truly can’t remember her well any more. Her behaviour was so awful and the situations I dealt with so difficult that it has completely tarnished what was a lovely and close relationship. I will be so sad when the end comes but it will be a relief of sorts. I feel terribly guilty about those feelings.

Do not feel guilty. Its what I want for myself....an early death rather than years of dementia. I am glad my mum died when she did. I'm sorry she and we endured years of dementia first

Be strong. It will end and when the day comes make sure you've said everything. Remind your mum of the good times. Talk about your childhood memories.

Although I still shudder when I remember my dads dementia years ( he also had very challenging dementia and was nearly sectioned) , I also remember him as he was before he was ill. As time passes I remember the pre dementia dad more. And I was relieved when he died and found it didn’t really mourn him, I’d done all my mourning while he was still alive.

@Candleabra. You may not have heard of Teepa Snow, she is a Nirth America expert in dementia.

She uses a gems system of classifying the stages of dementia and form your description your Mum is now in the Pearl stage. The gem is still there within the shell.

This is a nice summary www.nursepartners.org/resources/the-gems/

@Candleabra your last post has brought tears to my eyes for what you are going through and what you have already lost. I wish there was some articulate words of wisdom I could give you but I can't. I am really at the beginning of the journey of supporting my mum through dementia which I can see began long before other people noticed a change in her. The fact that you love her, even though your happy memories are currently clouded by what you have dealt with is very clear.

Hi, thanks for everyone’s support, it really means a lot.
Mum is still the same. Is drinking some liquids, but eating very little (the odd spoonful here and there).
Very sleepy and has been in bed a lot. Is also struggling to sit up (keeps leaning forward) so the home are referring her for an assessment for a special chair that will tilt back. She looks so uncomfortable in a chair at the moment. I understand they don’t want to put her to bed permanently but it does feel like a very big loss of functionality in the past few weeks. I suppose the muscles are just gradually ceasing to work.
So no crisis at the moment, just a continuing and gradual decline.