This feels like an unusual progression

[sandwichsue]

My mother was diagnosed with mixed matter dementia in 2020. She has physically failed significantly since December. She had a fall then basically refused to walk. Now she’s bed bound on an airflow mattress. Incontenant and moving only her right arm. I mean literally only moved her right arm. We feed her and change her with the help of a double carer team four times a day. She is starting to develop bedsores, foot drop and now is completely stiff she is difficult to manoeuvre. We use a hoist to get her out of bed into a chair but she hates that and can only tolerate approx 1 hour per day.
Her Speech has slowed down and she forgets some words but is still understandable and still has strong opinions. She refuses to consent to going
in a home and social workers have said she’s still competent in making that decision.
I can’t find anyone with this type of progression. Is it familiar to any of you? At the risk of sounding callous, I’d be happy to continue this for up to 6
more months. There are only two of us both married with kids and we are exhausted going to her house every day and making sure everything this ok. If this was a protracted period I can’t cope with it. Any advice?

It sounds a bit like Motor Neuron Disease? So sorry you’re going through this 💐

She can only consent to what is on offer. If you both say that you are no longer prepared to offer any personal care she will have to make a different choice. It is hard, but you have to make yourself and your family the priority now. She will have the same quality of life in a nursing home and you would be able to visit.

Thank you, I wish it were that easy. There are no dementia beds within 50 miles of our home. There are waiting lists and she won’t consent to the financial assessment. The social worker seems to think short of abandoning her at hospital there is nothing we can do.

OP to answer your question, as to whether anyone has experienced similar, I work in dementia services and yes, sadly loss of mobility/ motor function can certainly be a presentation and one that may occur more often in vascular dementia or mixed vascular/ Alzheimers. The fact that she is only using one arm may mean she has had a vascular ‘incident’. I must say also that your poor Mum might continue on like this for a long time, quite possibly years.
if she is now developing bedsores, to my mind it should become a safeguarding issue, as not allowing or considering alternative care she is effectively self neglecting. Has the social worker actually completed a proper mental capacity assessment? Around care and accomodation?

@sandwichsue A very good friend has the stiff form of Parkinson’s. It is accompanied by dementia. Everyone thinks Parkinson’s is shaking and trembling, but it can be stiffness too.

Id be angry if I was your mum. What a horrible “life”. I’m so sorry.

Has she got any swallowing difficulties?
Is her speech slurred?
Has she lost weight or got muscle wasting?
How is her memory and word finding?
Who diagnosed the dementia
From what you have said its sounds like she has declined physically more than cognitively.
It doesn't sound like the social worker has been helpful. It's sounds like you are doing an amazing careing job but you can ( and must) say that you are near carrier burn out.
I would contact your local family carers organisation and also your local hospice to see if they could support. Also you can contact your GP about your wellbeing. I've seen that really help but does depend on GP.
Also look to see if there is any chance she might meet nhs continuing health care.

So there is an atypical form of alzheimers which can do this. We are going through it with my Mum. But. I think it is quite hard to differentiate with other neurological disorders so I am pretty certain the clinicians give it a catch all term. They can only treat the symptoms so for them it's less important to have a formal title.

The only way I got Mum into a dementia bed was via a hospital admission when it was clear she wasn't going to accept help. It was pretty grotty to be honest. But she is in a lovely home now.

My DHs aunt had strong opinions on not leaving her house, but that didn’t mean she didn’t have dementia. She wasn’t safe at home and had to go into a secure dementia unit in the end. SS did the assessment. However no one was going to care for her at home to the level needed and she was very plausible and well spoken so she was “believed”. The police got involved and then we got a bit more action.

So that’s really I interesting @Lastknownaddresswhat symptoms does your mum display?

my mum is happy to accept help to stay at home and due to the massive shortage of care home places here the trust are giving her what she needs to stay at home. If my sister and I pulled away completely I don’t know what would happen as all dementia nursing beds have long waiting lists here.

@sandwichsue How much nursing does she need? Could a dementia home cope?

@Burntout01so when you say a long time……..how long?

Sorry @sandwichsue only just clocked your question. Pretty similar to your Mum to be honest. In hind sight it began with phsyical mobility issues more than mental issues. She was pretty sharp up until last summer. We put the phsyical changes down to arthritis but around Christmas she started to deteriorate rapidly.

There are other things in my M's case which are complicating things but the actual cognitive and phsyical decline is very rapid since Christmas.

So my DF has vascular dementia. He cannot walk, it is like his brain no longer sends the messages to his legs. We've been told that his severe mobility issues are caused by cognitive issues. He is losing fine motor skills. He speaks very quietly.

DM can't cope with the mobility issues after lots of falls. He also has a catheter full time which might be prostate issues but I am more convinced that it is linked to the dementia.

He is currently in hospital and we have made the very difficult decision to discharge to a care home. DM is devastated by this but he is not safe to come home for both of them.

It feels like this is an aspect of dementia that we don't hear about. DM could cope with the loss of memory and confusion or the mobility issues but not both.

For me it is reassuring to hear others having the same experience. Terribly sad for all involved. Be kind to yourself @sandwichsue, sometimes a care home is the best for everyone. You need to tell social care that you cannot cope - this is hard but only then will you get support.

@thefemaleJoshLymani agree, it is very comforting to hear of similar progression to mums. We seem to be in a position where she is “safe” due to her being in bed and completely unable to move herself. I think if she goes in to hospital it will be our opportunity to get her a home space.