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?

Oh it's SO unhelpful when people react like that in healthcare. So many people say we must get better at talking about death but when you actually try and do it -! I know exactly what you mean, I tried to have a realistic conversation with the consultant when my 88 year old dad had a stroke and he looked at me as if he'd found me holding a pillow over his face (he died a month later). What does 'hopeful' even mean in this context? Hopeful for what?

I wouldn't blame you for not wanting to discuss it any more but don't rule out either your mother's GP or your own GP for support. GPs are the community palliative care leads (palliative care is the last year of life not the last few days) and they may be more willing to have a helpful conversation.

@PermanentTemporary yes you're so right. I had a wry smile at your description of the consultant's reaction.
Mum is the same, food/fluids vary - not nothing, some days better than others, but not great. She has lost weight.

Her GP is involved now. Has prescribed a "precautionary" second dose of stronger antibiotics (Doxycycline). I don't know why they are classed as precautionary, surely she either has a chest infection or doesn't.

The gp is also reviewing all her regular meds with a view to tapering off them as they are probably pointless now. (the care home staff's words).
Noone has mentioned end of life yet....but none of this sounds good to me. Struggling to get any answers other than wait and see.

Precautionary probably if she has a single symptom such as a temperature, they can start antibiotics without waiting until her symptoms get worse - the idea might be to avoid admission? But don't be afraid to ask.

I'm with you OP, it doesn't sound good. And yes, medics and carers often seem very bad at switching to the "Mrs X is on the way out, let's make sure X Jnr can visit and we make proper judgements about treatment etc" mode.
I guess they see so many people that occasionally someone does make a significant and unexpected rally, and that makes them reluctant.
But the worst call I've ever made was when I was convinced Mum was in her last week, and the next day the ABs started working... she still only lasted another 2-3 weeks though. I've pretty much always been right.

So trust your gut and be accordingly assertive. It's not as if you're going to have a long-term relationship with the care home after your Mum is gone.
I guess you are still working? You may have to take a day off to devote to troublemaking clearing the air and negotiating a visiting schedule for you, and end-of-life care.
I can only imagine that there are significant numbers of people who nod along when they're told that (^ all of what they told you above ^) and then switch into batshit mode when someone makes it explicit that this means their parent is dying.
Anyway best of luck. And carry a notebook and pen and jot stuff down, that always seems to be a socially acceptable way of keeping people on their toes :/

And yes, medics and carers often seem very bad at switching to the "Mrs X is on the way out, let's make sure X Jnr can visit and we make proper judgements about treatment etc" mode.

Agree with this. My FIL passed away in April and they were really bad it. Kept being hopeful when we couldn't see how. Ultimately MIL wasn't able to say her good-byes properly.

Not dementia but still. We kept thinking they would move to good-bye mode but they never did

'I don't know if she can get any worse and live' is the biggest lie dementia tells.

Basikerly in order for your body to die, you heart has to stop beating and your lungs stop breathing. All the other functions of the body and brain can be lost (eg the five senses) or replaced (eg tube feeding) by care homes. Dementia takes a long time to do this, and in any case you can be kept alive with onsite machines. She could remain in the home for years.

There's a big difference between 'alive' and 'not dead'.

My Dad has been in a Dementia lead Care home for 3 years now. Since having Covid in April he has been bed bound. Not able to sit in a chair so has a hospital bed that sits him up. He is doubly incontinent, doesn't know me, can't feed himself, talks but doesn't make sense. The words make a sentence but it is never relevant to what I am talking about or have asked him. He sleeps a lot of the time. He has no quality of life. And yet he eats and drinks. As long as he is doing both he could live this non- life for a very long time. He would not want it for himself and I don't want it for him. I wish it were over for him and I don't feel callous saying this as I know he would want it over with as well. He'd say he was able to give his dogs a more respectful peaceful end to their lives than he is getting.

It's a horrible journey for our loved ones and for us witnessing it.

Sorry he got Covid in February so 6 months completely bed bound

MIL had dementia. The end was a long drawn out process over about 9 months, similar to what you are experiencing, OP.

One Saturday, the home called DH to say "your DM is very poorly, we've called the GP." She had a chest infection on top of being bed-bound, unable to sit up or feed herself etc (very like your DM). The GP (new, with no previous knowledge of MIL) decided that MIL might not last 24 hours. We rallied the family, and waited. And waited. She seemed to get over the chest infection over the next few days, but didn't actually recover. In fact she died a week after the GP gave her 24 hours. It's hard even for the medics to be accurate sometimes.

it's hard, OP.

Thanks everyone for all you kind words and sharing your stories. I'm sending myself mad trying to second guess everything.
I've been to see mum this morning and she was actually reasonably perky. Not awake for long, but perhaps the antibiotics are doing something.
Care home staff say nowhere near EoL yet. She could go on for years. I know this is meant as a comfort, but I can't bear it sometimes. She is alive, but not living.
So we are back to where everyone said we were ...wait and see. The decline is clear, but then that's been the story for years. I still think this is the beginning of the end, but not the end yet. And no timescale for that journey. It is a terrible illness and so hard on everyone.

Hi, an update and wanted some advice.

My mum never regained any mobility and is now losing the ability to swallow. She’s holding food in her cheeks rather than swallowing. The care home have asked for a SALT referral and will purée food until the assessment. Can anyone tell me what the assessment will entail? I’ve looked online and it said something about a swallow test, but not sure how you can test someone who has no understanding. Are there any helpful things to know so I can ask the right questions?

@Candelabra, I don’t have an answer to your question about the swallow test but when my relative was in the last stages of dementia, the carers would stroke his cheek which made him swallow. He gradually ate and drank less and less and died soon after. It was very peaceful though. He had early onset dementia and died a few weeks after he lost mobility. I’m always grateful that he didn’t suffer for too long. It seems the dementia journey is different for everyone.

@vulgarlady it really is different for everyone. I’m sorry about your dad.
I’m on edge all the time waiting for the next thing. It’s been like this for years though, you think things are stable then something else goes wrong.

@candleabra Wishing you and your mum all the best x

I've followed this thread with a mixture of relief (mum isn't there yet) and terror (is this what we have to come?)

I don't know about the SALT assessment but wanted to say thank you for sharing your story. I wobble between wanting to read everything to be prepared and hiding under a rock in case I read something that upsets me.

@IthinkIsawahairbrushbackthere it’s such a horrible journey. Sorry about your mum. It’s hard to find information about dementia as it seems to affect people so differently. I always want to know more about the path we’re on and what’s to come, but very often no one has any answers. It’s just.., wait and see what happens, see how the disease progresses. It’s very hard.

Still no SALT assessment though it has been chased up. Mum won’t eat solid food or purées. She will still drink though very slowly.
Seems bright enough in herself. No obvious signs of illness, eg temperature.
The staff sound worried, they are usually very upbeat. It does seem like she’s just forgotten how to eat. No idea what the next steps are if this is the case.

Hi Candelabra. The swallow assessment is to look at where the breakdown in the swallow is and what the risk of aspiration is (food and drink going to the lungs). I'm a SALT working with older people and palliative care, do feel free to PM me. If you don't want to do that, remember you can always ask 'why is this happening' and you can ask to be there when the SALT is, or ask if they can ring you.

Thank you I have pm’d you

Dietitian here, I work in care homes. The SALT assessment will aim to pinpoint which textures she can best manage, in late dementia that will usually be a puréed diet and thickened fluids. There will likely be some level of risk with all textures, the risk being aspiration ie food/ drink getting into the lungs. It is really hard. My dad had Alzheimer’s and he died after aspirating. I had baked a fruitcake for Christmas and brought him some, I can’t help thinking (in that self blaming way that children of demented parents do) that that caused his death. But realistically, food was probably his last pleasure and he was going to aspirate on anything he ate and tube feeding is not a realistic option.

Sorry, I managed to miss permanent temporary’s post 😳.

Thank you anyway! No SALT assessment yet. They’re really busy,
To be honest mum has deteriorated so much I don’t know if they will be able to do the assessment. She’s hardly eating anything now, and drinking very little. She just holds the liquid in her mouth and it dribbles back out. She’s so sleepy and her mouth looks bad inside (I assume due to lack of fluids)

So sorry that you're still waiting for the SLT assessment @Candleabra.

Have the care home said there is anything that they can do for her mouth?

Sorry to hear this @Candleabra. It does sound like she is close to the end of life. I suspect a SALT assessment would recommend very small amounts of soft / puréed foods, maybe thickening fluids and good mouth care, but not to be forceful in helping her to eat or drink.

She’s just going downhill so quickly now. It feels like I could measure the decline in months, then weeks, now it’s days.
The doctor has seen her today. Doesn’t think she’s in immediate danger, vital signs all strong, so not EOL yet. I assume this could change quickly though.
Still eating/drinking very small amounts. Mouth looked ok to the doctor. I’m going to visit this weekend so I’ll see what I think.