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?

It's more likely that the eating will dictate how long she has.

There is absolutely nothing left of my lovely MIL. She's just a shell. But unusually she still eats enthusiastically. Obviously she has to be fed, but she opens her mouth like a baby bird ready for the next mouthful. Unless her brain eventually fails to tell her heart how to work, I assume she could go on for some time still.

Is there a DOLS in place?

Can I ask how a DOLS would be relevant? We haven't reached the stage where DMIL stoops eating but she has already forgotten what food is but will eat with some encouragement so it can't be that long.

A DOLs might help as her careplan and care needs have now changed and all her care must be given in her best interests by the staff. For example, if someone stops eating then they should have a swallowing assessment done by a speech therapist and the dietician or doctor would need to assess and prescribe build up drinks or a suitable diet if appropriate, medication would also need to be reviewed and altered, there would also need to be a plan in place for all the complications that can arise from not eating. As the resident has lost the capacity to refuse or consent to this then the DOLS ensures the care is given after discussion in their best interests and a decision to stop feeding, transfer to hospital or stop medication could be taken by a doctor and the courts. If the resident needed a higher level of care that the home couldn't provide then the cop could make the decision for them to be moved somewhere else and make the financial arrangements. That's my understanding of it, others may know more.

A colleagues mum with dementia took to her bed and died within 4 weeks, but everyone is different.

DOLS is about deprivation of liberty and mostly relates to people with dementia who are trying to leave the care home etc. It isn't essential here. Please don't worry about that bit. Health care professionals can make decisions about her care in her best interests without a DOLS under the Mental Capacity Act, and will include your thoughts, although you won't have the final say.

Yep, the DOLS doesn't factor into the situation in the OP, as I understand it. In my MILS case it was simply in place to prevent her leaving the premises. Not any of the other care needs.

I signed the DOLS when mum went into the home. I thought it was just to say that she couldn't leave the home of her own free will.

Thank you Dogs & Jobshare. Both really helpful posts.

www.alzheimers.org.uk/get-support/legal-financial/assessing-mental-capacity-dementia

www.ouh.nhs.uk/patient-guide/safeguarding/documents/health-workers-guide.pdf

It may be worth asking about putting a RESPECT form put in place, it's a newer form being rolled out across England (apologies if your not based in England) that the GP can complete, it goes into more detail than a DNAR and looks at things such as when would hospital be appropriate, would IV antibiotics/fluids be appropriate, comfort care Vs life sustaining care which just makes it easier for health care professionals that may not know your Mom well - such as ambulance staff - make a decision in line with what you and mom would want for her treatment. Especially if for some reason they can't get hold of you as NOK to have that discussion.

@123deepbreath thank you, I'll ask about that.
I did have a conversation on the same lines initiated by mum's GP late last year about a 'ceiling of care' where certain procedures or treatments would not be recommended now. The focus is on keeping mum comfortable.

The example they used is they would take mum to hospital to treat a broken bone that would cause a lot of pain, but probably wouldn't admit her to give IV antibiotics.
I did agree to this, but the doctor said the future is so unpredictable, and everything would be on a case by case basis.
It's so hard to get my head around dementia being a terminal illness. I know it is, and obviously can see the decline, but it's still difficult to comprehend.

@Candleabra dementia is such a difficult disease, it's almost like loosing the one you love twice, mentally then physically. Not to mention there being no specific timescale of deterioration it's just so difficult to know where you stand and try to prepare yourself for what will happen x

@123deepbreath that's exactly it. We've been dealing with this for years now.
It's a cruel and vicious disease.

Dementia is bloody cruel disease. But it's worse on the family. My grandmother was blissfully unaware of anything and lived in her own world.

Unfortunately, it's also pretty impossible to say how long they will last for. We were told after one fall that my grandmother wouldn't make it through the night. She went on another four years.

I think she was bed bound for the last two years of her life. The last year of her life we couldn't see her due to other family ill health and covid. So I don't know really what state she was in before she passed.

Update: mum still isn't mobilising independently, she can't bear weight on her legs and is now having difficulty sitting up. She also has another chest infection.
She is still up and dressed when I go to see her and she still spends most of her time in the care home lounge. But she needs absolutely everything doing for her now. Even the staff say there has been a visible decline over the past two months (due to the dementia, no other causes).

Can I ask, what is the definition of someone being bedbound? Is it a literal meaning that someone is confined to their bed and is lying down?

I would say bedbound is exactly that yes - unable to leave bed,.though with a hospital bed will still sit up.

So sitting “up” if supported by bed but unable to sit unsupported in a chair?

@MereDintofPandiculation

So sitting “up” if supported by bed but unable to sit unsupported in a chair?

No mum can still sit in a chair, but is unable to maintain an upright position. She appears unable to correct herself, she's completely dependent on carers moving her, lifting her up, supporting with cushions etc. She's sort of slumped to one side with head supported by the wings of the chair. It all seems to be quite a quick decline in capabilities.

How does she move between chair and bed - hoist?

I'm not sure. I think they have been supporting her to move from bed - wheelchair - chair, but the staff were hopeful that it was just a blip rather than a permanent decline. Now it's been a couple of weeks they're getting occupational therapy to assess her transitions.
They may well be using a hoist all the time now, but things seem to be changing very quickly.

Hi, unfortunately mum hasn't regained any mobility in the last few weeks. She is now sleeping most of the time and not eating or drinking much. The care home staff seem concerned but aren't sharing much other than facts (eg temperature) and that she's slowed down a lot. They are usually super positive so it's more what they're not saying than what they are.

I understand there is no exact answer and they don't want to panic relatives unnecessarily, but am desperately worried and would rather they were straight with me. I don't know if I should be picking up on something or reading between the lines?

Do the care home staff share all their concerns with relatives or is it just when they know something for certain?

It does sound im afraid a if she may be in a decline towards death now.

I think you might have to be blunt and ask staff whether they think she is dying and/or how long they think she has.

Tbh even healthcare staff have different ways of talking about this. Many will talk about 'actively dying' which would typically be a prognosis of 'short hours or days'. If they say she is not dying, they may mean that. It is very difficult to predict how long someone will live, but they might talk about 'short weeks' or 'short months'.

Thank you for replying.
I asked the staff last week whether we were looking at months and they sounded horrified and said to stay hopeful and you could never tell. I think I must have sounded really callous (I didn't mean to, I'm just desperate for answers in all the mess and terror).
But even in the last week things are worse.
I think she is dying too, not actively, but in the very last phase. She ticks every box: not mobile, can't speak or understand or communicate, requires care for absolutely everything, can't feed/drink independently, has chest infection, doubly incontinent and now not really eating/drinking even with lots of help.

I know people can go on for years, but I just don't see how she can get much worse (though to be honest, I've said this about every stage of this awful disease).

How sad for you. The staff at my MIL's care home are extremely jolly, at least they are when we visit. She's been there for 7 years (dementia) and is in the same state as your poor Mum. It's pitiful.