Any advice appreciated

Hi, mum 86 years old has had declining mobility for years so house has been adapted as this happened. After a bad fall 9 months ago things have really gone downhill; 3 hospital admissions for infections and respite care homes, each time she came home the care she needed has escalated as she could not be discharged to be home alone. Last time my sister agreed to live with her for a few weeks to help and this turned into 7months of 24/7 care as mum is now completely immobile, cannot stand or walk, using a commode, needing assistance with everything. Her house is small and impractical, she cannot access the shower as it is too small, mum is heavy and it has taken its toll trying to move her.
Being with mum is not a pleasant experience, she is very selfish, manipulative and unappreciative of everything, becomes hostile if you disagree with her: it is her way or the highway. She is never happy, nothing is ever good enough. She drains your energy: there is no conversation or banter. She basically wants you to do the work and leave her to watch tv. She says I can manage or I am coping when she has done absolutely nothing at all for 7 months and has no recognition of what we are doing. If you heard her on the phone you would think she was dying and then two seconds later she is shouting at the TV. She makes up stories of her idyllic past life to anyone who will listen; she has completely rewritten our childhood. We are exhausted.
My sister has to go back to her own home so we tried carers coming in while she was still there and mum hated them, complained non stop and said some really nasty things about them, until they were told not to come back. We all decided that we could not go on, we have our own homes and families and caring for mum was a full time job; then mum agreed to go into a lovely care home we took her to visit. What a huge relief.
One month later and sure enough she hates the home and everyone in it, complains about everything and everyone. She says that they are doing nothing for her when in fact they are doing everything. Mum sits in her chair and watches television just like she did at home.
Spoke to the home yesterday and mum has complained to a visiting OT, she wants to go home and have carers. SS are now involved. Testing mental capacity. She will not listen and has no comprehension of what her being at home entails for everyone else, all the organisation, all those people coming in and out in that tiny house, shopping, cooking cleaning. We don’t have the physical or emotional energy to do this anymore and I am dreading how this is going to pan out. Why can’t she just be content where she is, stop being so self centred and think about what is best for us as well.

I regret to say that this is definitely a time when NEEDS outweigh WANTS - your Mum is now at a stage where she needs 24/7 care from a team of people - a level of care that no one or two people can provide.

You don’t have to provide the care and you cannot be forced to do so - to do so would be detrimental for both your mental and physical health.But you must tell SS that neither you nor our sister can care for her any longer.

A month is not very long for her to have settled in the home yet - it can take weeks/months. In our case it took my Mum the best part of 3 months before she was accepting of the situation and nearly 6 months before she was really settled.

You don’t have to.

No-one is under any legal obligation to care for any one else no matter what their relationship. Just tell Social Services that you can no longer help.

You’ll have to be firm, S/S will lie, cheat and cajole to try and change your mind.

Make it very clear to all concerned that you will not do ANYTHING for her if she goes home. I mean ANYTHING!

Thank you, I have been reading this forum for weeks and things have come to a head so thank you for taking the time to help.

We keep going over the same things and can’t understand why she would want to go home, it will be awful and she will not like it or the procession of strangers coming in throughout the day and being left, basically stuck on her own unable to do anything. I can’t get this through to her and don’t know what she is expecting to happen, she is really hard to deal with and I am so frustrated and angry that she is doing this after everything we have been through. She just wants what she wants and she is having it, she has no feelings for anyone. I know that nothing will make her happy so this will be the start and it will not stop with this move if it happens.

I have made it clear to SS that we cannot help and I have told both the home and SS that I will not facilitate a move out of the home in any way or enable it to happen, so if it happens they will have to organise it all. What I can’t believe is that given the state my mum is in, that this move would even be considered as an option for her, all I keep getting asked is does she have mental capacity, I don’t know. What I do know is she can’t move, she can’t even shuffle up the bed so how is this going to work.

I’m afraid elderly people become so self focussed, that this is “normal”.
My mum would tell people she could do all sorts of things at home, when she was talking about years ago.
Reality was very different.
You may have to let your mum fail at home to get her to understand her frailty.
The whole idea of capacity in this context is just plain daft.

If SS decide that an assessment to do a home visit with Mum should take place. Do everything in your power (and you have power) not to let this happen. Be firm that the family have no intention in supporting any attempt. To move Mum back out of the care home. What the care home need to do is find ways. In encouraging Mum’s stay by occupying her. In ways to support her in the care setting.

Does Mum own her home.

Yes she owns her own home and is self funding the care home and I do think some of this is to do with the cost of care and mum is obsessed with checking her money. When she had the carers in, it was after a stay in hospital and they were free, we have told her they are not free now and keep telling her she must pay for everything, but it falls on deaf ears as she has made up her mind she is going home. It is not just the carers, who is going to run the home?

As for the OT, when she was in respite care we were getting calls from her, saying mum isn’t happy she wants to go home and now this again from an OT visiting the care home; I really wish they would not interfere as I have said before my mum is a really manipulative person and will fabricate things to get her own way. If the OT had told mum that she couldn’t go home yet until she was stronger or could do a bit more I don’t think we would be in this situation.

You could speak to the O/T’s and if you are still not satisfied. Speak to the manager and/or ask for a meeting/conference call etc.

Ask for copies of assessments the O/T has completed. And find out why she feels able to support Mum making such a move. Be clear of you and your sisters input to support Mum to live at home. And you are no longer willing or available as this has been already put in to practice. And Mum’s needs were far to high to support her wishes.

From what you’ve said earlier about your Mum’s health there is a possibility that she could be eligible for Continuing Healthcare - which is would be totally free (paid for by the NHS) - you can read up on it here

There would have to be an assessment to see if you she qualifies and, unfortunately it can be a bit of postcode lottery in some areas - but certainly worthwhile pursuing.