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?

So sorry that you're going through this. No matter how much we know about how this disease progresses the next stage can always come as a shock can't it?

I don't know if your DM will be reviewed by a GP. It might be an idea to talk to the manager of the home. You could also check what type of mattress your DM has (it will need to be one that reduces the risk of bed sores) and what their turning policy is.

If you ask @MNHQ to move this over to the elderly parents section, it's a bit busier in there and you may get some more replies

@BunnyRuddington thank you for replying.
Yes it's very scary.
I hadn't really thought about the wider implications of mum no longer walking - it's not just the walking but the lack of mobility overall and being unable to shift position in a chair even.
I will ask about the mattress, thank you.

I'm not sure if this is the right way to request this, but @MNHQ could you move this to elderly parents please?
If it doesn't work I will set up a new thread!

I’m sorry you are both going through this. Dementia is such a cruel disease, for both the person concerned and their loved ones.

I’d ask about when she is next seen by a doctor and say you have concerns. Is it time to consider a nursing home or is the care home able to properly look after her?

When dad got to this stage he had a visit from a physio who helped with understanding what he physically couldn't do any more and what was his brain not being able to work out to. And then gave tips for helping him by prompting or physical props. And that was after he tried to hit her with a zimmer

she should be assessed by district nurses to get an air mattress.
she may need a higher level of care and monitoring.
it is very important to take measures against pressure sores.
speak to the manager of the facility.
all the best.

I'd also suggest you think about what sensory experience she is going to have now she is immobile. Will they support her to access opportunities to be around others/listen to music/watching her favourite TV show etc and not just leave hert in bed or with radio 1 blasting her all day? Think about what will be touching her skin, what scents she likes etc.

www.ageuk.org.uk/information-advice/health-wellbeing/conditions-illnesses/dementia/dementia-and-music/

I'm sorry this is happening. It's such an awful disease.

You need to report your post and ask for it to be moved. Sorry to hear about your mum. Have a chat with the nurses. She will need her careplan updated to include her pressure areas, continence, skin condition, washing and dressing, pain. The nurses may have spoken to the doctor to rule out any infection or injury and to see if she needs painkillers. It could be a progression of her dementia.

Is she in a carehome with registered nurses or a residential home with carers and the district nurses coming in.

We've moved it for you now, OP.

My MIL hasn't been able to walk for a long time. The Occupational Therapist visited and arranged a wheelchair for her, and the staff ensured that her quality of experience in the home wasn't affected. They know and understand her very well, and they ensure that she's not just plonked and left anywhere.

She now has (thanks to the generosity of another family who donated it after their relative died) a really amazing comfy and adjustable recliner chair on wheels, which helps enormously with her positioning and comfort (especially since she's deteriorated and would otherwise be just slumped over), while still being mobile. If the home doesn't have one, and your DM has money available, I'd definitely look into buying one.

@DogsSausages

Is she in a carehome with registered nurses or a residential home with carers and the district nurses coming in.

The latter. It's a very nice home. I hope they can manage her needs now.

Thank you for everyone's helpful suggestions. It helps to know what questions I need to be asking.

It is almost certainly a progression of the dementia. It's hard to know how much further it can progress to be honest, but then it does.
Walking has been bad for ages, but somehow she has remained mobile. Lots of falls though.

Sorry for the distressing question, but is mum nearing the end now? It is hard to know how much worse she can get. Or do people live for a long time like this?
It is a terrible disease.

Is it a dementia home, OP?

If you're happy with it and the staff at this stage, I'm sure you don't need to worry about them coping with her. It's quite standard for dementia to progress this way, so they'll know how to deal with it. They'll also be used to working with OTs in order to ensure that they're meeting her needs in all physical areas, such as feeding and hoisting etc. I know it's a shock for you, but it won't be for them. They'll know the system.

I and my SIL live 2-3 hours away from MIL's home, and of course Covid made it even harder for us to visit or be fully involved in her care and decisions regarding it. SIL in particular is in regular touch with them, but there's very little that we have to organise for her. The staff are on top of this stuff.

@Candleabra

Sorry for the distressing question, but is mum nearing the end now? It is hard to know how much worse she can get. Or do people live for a long time like this? It is a terrible disease.

My MIL is the longest resident at her care home. I can't recall when she stopped being able to walk or talk, but I'd say it's at least 18 months, and could be two years.

I don't know how she keeps going to be honest. And I don't think she's typical at all.

So I honestly don't know how it looks for your mum. I suspect that it's all unpredictable. I'm sorry you're going through this.

@saraclara yes it's a dementia home. So unfortunately, they must be used to it. I'm sure they will do everything, I just feel better if I can feel more involved in her care by knowing more.

The staff usually say she's doing well, but I think there's always an unspoken "...in spite of the fact she has advanced dementia..." at the end of the sentence.

I do think they could be more direct sometimes. I remembered today that one of the staff last week said she was "slowing down a bit" which I think may have been a warning of this latest progression.
I suppose her baseline is different for them. They've only known mum to be extremely ill, whereas I remember her from years ago and how she was. It's so sad.

Sorry for the distressing question, but is mum nearing the end now? It is hard to know how much worse she can get. Or do people live for a long time like this?

It is a terrible disease.
I haven't got much experience but it seems very hard to predict. A DAunt of DH survived for a further 2 years but I think that was partly due to the wonderful nursing care she received in a home.

DMIL is a year past the average for survival after a diagnosis with Vascular Dementia and still seems mobile.

There are exceptions but generally speaking there are average survival times after the onset of symptoms if you feel up to searching for them online. The Alzheimer's Society forums are also a good place for support.

Have you had the conversations with then about how you want your mum to receive medical care going forward? This is definitely worth doing. We agreed that Dad would be nursed by the home rather than taken to hospital unless it was something acute like broken bones etc. And a DNR was in place. It was reassuring knowing he would most likely end his life somewhere he knew cared for by people he was familiar with.

@helpfulperson yes I've spoken to the GP about this. The DNR has been in place for a while.
Focus on comfort now.
She still has antibiotics and other meds whilst she can take them orally though.

@Candleabra

Sorry for the distressing question, but is mum nearing the end now? It is hard to know how much worse she can get. Or do people live for a long time like this? It is a terrible disease.

She could still live for many months or a couple of years, but it’s so hard to tell. You say she can still feed herself and presumably because you want to involve the GP, she is still receiving medical treatment. I’m sorry to be blunt, but do you have a plan in place for whether you (I’m assuming you have POA) will allow her to be fed once she stops being able to do so or whether you will withdraw from all but palliative medical treatment?

I don't have POA.
She can't feed herself. The eating has been difficult for the last year or so. She lost a lot of weight last year and never regained.
She will still eat and drink with a lot of prompting and help, has ensure drinks etc.
I think the eating has gone downhill though in the last few weeks, along with mobility.
I tried to give mum a biscuit, but it was like she didn't know what to do with it.

@Candleabra

I don't have POA. She can't feed herself. The eating has been difficult for the last year or so. She lost a lot of weight last year and never regained. She will still eat and drink with a lot of prompting and help, has ensure drinks etc. I think the eating has gone downhill though in the last few weeks, along with mobility. I tried to give mum a biscuit, but it was like she didn't know what to do with it.

Is there a DOLS in place?

Re: DOLS, yes this was put in place when she went into the care home