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Original poster

Late stage dementia - suddenly not walking

111 replies

Candleabra · 05/08/2021 15:50

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?

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Uninterested · 14/12/2021 09:36

I'm sorry to hear that your Mum died. I read the whole thread and it is is clear how much you loved and cared for her.
I'm sure no care home is perfect but it sounds like your Mum had good care. That must be of some relief.
I know you must be in the mist of grieving just now but I hope you find that the good memories will come to the surface over time.

I'm sure you've been told it a million times but you've been through something that's quite traumatic and you shouldn't underestimate the effect it might have had on you. I'm guessing you have felt worried and stressed about your Mum for the whole time that this all started. That physically and mentally exhausting.

You sound like you were a lovely daughter.

CornishGem1975 · 14/12/2021 09:11

So sorry for your loss @Candleabra. I think it's usual to feel a mix of feelings.

My DM is in a care home with advanced vascular dementia and Alzheimers, and in all honesty, I already feel like I have grieved. I lost my mum a long time ago. My biggest hope for her is that in the relatively near future, she goes to sleep gently in her bed and doesn't wake up - before she gets to point of not being able to walk, or feed herself etc. (My DM worked in mental health all her life, she would hate to know this is how her life has ended up).

Big hugs, look after yourself. Grief affects everyone differently. Come back and talk if you need to.

tintodeverano2 · 14/12/2021 09:02

So sorry for your loss.

Dementia is such a cruel disease. My Nan died last year after being in a home for five years. It was such a relief when she went. I think I had done my grieving for losing my Nan before she actually died as she wasn't my Nan anymore. Dementia made her an awful person and it was so hard to see her like that. She was violent and so full of hate for everyone.

Take care of yourself, the memories do come back, but for me it's been very slow. I think it's because I lost my mum four months after my Nan, and so the grief of my mum passing has consumed me.

Original poster
Candleabra · 14/12/2021 08:32

A sad and final update from me. Mum died at the weekend. Just stopped eating and drinking completely, and didn’t get out of bed. It was a slow decline over many weeks but once mum stopped drinking it was very quick.

I don’t know how I feel really. Relief at first, for her release (and mine) but I feel utterly bereft this morning. I hope the happy memories will come back (I’m sure they will).
Dementia is such a hideous disease. It robs you of every vestige of the person you once were. Thank you to everyone who supported me in this thread and gave such good advice.
And hugs to those who are going through this terrible journey.

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vivariumvivariumsvivaria · 09/12/2021 17:46

It is lovely to read that you have been consistently happy with her care. I hope that you are still confident the home is caring of her and for her because I think that is a real gift for the stage you are at. I'm sorry you are having to deal with this, it really is a very cruel condition.

freshcarnation · 09/12/2021 16:50

Your poor mum. Bless her heart x

IthinkIsawahairbrushbackthere · 09/12/2021 16:46

Must be so painful for you. So sad.

Original poster
Candleabra · 09/12/2021 14:48

An update of sorts, I find it helpful to write things down.
Mum is still eating tiny bits, drinking very little. Is very sleepy. Increasingly so. Is in bed almost permanently now. When she is up, she can no longer sit upright. She has lost a lot of weight in the last month.

OP posts:
Original poster
Candleabra · 02/12/2021 08:53

Thanks @NotwatchingSpooks
I’m very sorry about your father in law.
I’m just worn out at the moment, feels like it’s all balanced on a knife edge. Phone calls, emergencies, visits, it’s awful. Mum is relatively settled this week though fluid intake is very low (around 400ml per day), food is almost non existent.
Logically I know she can’t continue forever like this, but for the moment there is no immediate danger.

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NotwatchingSpooks · 01/12/2021 21:12

Op my FIL was diagnosed with vascular dementia in August , following a severe stroke in December 2019. So I know a little of what your going through. I am so sorry that you have been on this terrible journey and hope that you are getting some support.
Thank you for sharing as I hope it will help me to understand a little better and to be able to support him better.

MysterOfWomanY · 27/11/2021 13:12

I am glad you're able to visit, OP. I'm hoping they can keep your Mum comfortable. Flowers

Original poster
Candleabra · 26/11/2021 11:46

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.

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IthinkIsawahairbrushbackthere · 22/11/2021 11:14

@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.

Muchtoomuchtodo · 21/11/2021 22:38

@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/

Late stage dementia - suddenly not walking
whataboutbob · 21/11/2021 22:18

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.

WomblingKnobhead · 21/11/2021 21:55

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.

WomblingKnobhead · 21/11/2021 21:53

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

Original poster
Candleabra · 21/11/2021 21:29

@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.
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Original poster
Candleabra · 21/11/2021 21:26

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.

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whataboutbob · 21/11/2021 20:25

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.

WomblingKnobhead · 21/11/2021 19:53

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.

whataboutbob · 21/11/2021 19:40

Agreed!

Supersimkin2 · 21/11/2021 17:42

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.

whataboutbob · 21/11/2021 14:44

@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.

dane8 · 21/11/2021 14:29

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