All the physical none of the mental!

[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?

My DM has PSP which comes under the Parkinson's plus umbrella. In her case it has come with dementia but there are loads of variants, I would suggest that you push for some diagnosis, with us the social worker thought she had capacity even with non mobile, double incontinence and deemed as high demands by the respite placement. A memory clinic practitioner pin pointed her eventual diagnosed and clarified that she sadly lacked capacity

@Hopeandglorythats very interesting. Mum is under a geriatric psychiatric doc. What did your diagnosis distinguish as being the part were she lacked capacity.

What kind of things are you doing when you help out and how would you feel about stepping back?

I do the full management of her house. Make sure bills are paid heating etc is running and serviced. Order meals every week and make sure medications are all in the house and up to date. Co ordinate carers nurses and docs appointments. Arranged the house to be fully covered by cameras and keep an eye on those. Am the contact if any professionals need to discuss her care etc. plus at this point I’m the only one getting her out of bed. Carers can’t get her out of bed as she can only tolerate a short time in the chair. Could I step back? I don’t see how I could.

I know, it’s totally overwhelming isn’t it. I was just wondering if you did step bank a little in some way then the Carers might start reporting that there are issues?

With my DM she is trapped in a non mobile body with a mind that has selective memories but the ability to sound totally rational. Today she told the carer that she wanted to go to bed after lunch (totally logical as,her sleep pattern is shot, either no sleep or out for the count and unwakeable for up to 48 hours) I visited,10 minutes later and she was crying and shouting that she wanted to get up. She started the conversation admitting that she asked to go to bed and then informed me that she was made to go to bed. It is only because I am aware of her pattern of behaviour that I know she would have asked to go to bed, someone who was not aware of her would assume that she was out to bed against her will. She sounds plausible and does not want to be in a care home but she has no concept of the depths of her inability to manage any personal care for to keep her self alive