Mother in final stage dementia in a nursing home, 82 year old father wants to take her home

[Meripenopause1]

I'm struggling to find out what sort of protections are in place for this scenario.
My mother has had dementia for over 10 years. My father (with my help) looked after her.
Last August, whilst I was visiting, my father fell and broke his arm. I found my mother a place in a local nursing home, which my father pays for.
Since then, my father has had several health issues, now more or less sorted with some physio and surgery. He is unsteady on his feet though.
My mother has lost all capacity to walk or stand. She lost the ability to say words a couple of years ago. She is well-fed and gets good care in the home.
My father has always insisted that once he was better, he would bring her home for care and has now informed me, my sister and other friends and family that he will be bringing my mother home in the next couple of weeks.
We have had a couple of meetings with nursing home, who have tried to impress upon my father the sort of care that my mother needs. But he will not budge. The nursing home seem reluctant to get involved beyond this and seem to accept his decision.
My father would pass any mental capacity assessment, in my opinion. But this and other things that he says and does are eccentric (he has always been a mad scientist type). He believes that he can get my mother back on her feet.

He is telling everyone that I will help. Also that my sister (who is a doctor) will be fetching my mother. My sister won't get involved at all and says that she will stop talking to our father if he persists with this line.

Everyone believes that this is a disaster - as do I. Although I can see his point - he is lonely and wants his wife home.
I made an enquiry to a local home help agency who say that they can supply 3 or more visits a day by 2 members of staff. I don't think it will happen without my help to organise it though. Nobody has power of attorney for my mother.

Today I just feel very upset. My sister has backed off, my father is stubbornly repeating himself and I've no idea what to do. Can I ask my mother's GP to intervene? Or should I call social services? All attempts to call them have resulted nobody calling back or stupid conversations with newly qualified workers, where I'm advised to take my father to tea dances to take his mind off it. In theory my father could arrange home care and a private ambulance to collect my mother. Whether he can think clearly enough to do this, I don't know.
None of this is helped by the fact that I spent many years trying to help care for a my mother. She has had violent rages all her life and I have no love for her at all. All she does now is sit in wheel chair shouting virtually every moment that she is awake. When she was at home, the neighbours nearly had breakdowns due to the noise.
Can anyone advise?

By the way, I have one child still at home and run a small business with 10 staff. I'm busy myself. Why do I feel so guilty and pathetic?

[UnexpectedItemInShaggingArea]

I'm with your sister. Back off. Make it clear to all agencies that you don't support the decision and won't be assisting, and then detach.

[Meripenopause1]

Thank you. I need to hear this.

[GfordMum101]

We have had a similar scenario, though not as bad as yours. In and out of care homes, hospitals, changing minds, wanting independence but then complaining of lack of support. In the end we have arranged for a live in 24 hour carer, paid for by them, and we have tried to step back. In the end it is your parents decision, and in our experience, hospitals, care homes, social services or the family doctor, will side with your parents wishes, not yours. Your health and sanity are important too, of course you will feel guilty, but like me, you have your own family to look after, so you have to be a bit hard.

[Meripenopause1]

Thank you GfordMum101 . Sorry to hear that you have been down this path. It's starting to feel quite obvious that I need better boundaries around this!

[Time40]

I don't know if my story will help you, but here goes: When my mother was admitted to a nursing home, we were told by her social worker that we had no choice - the hospital had made the judgement that my mother HAD to be in a nursing home, because that was the only way that her care needs could be met. Your mum sounds as if she has high care needs, OP. Maybe if you could get her assessed, a similar judgement would be made? The good thing about this, in our situation, was that because we had been given no choice, we did not have to pay the nursing home fees.

I'd advise you to contact a social worker, and say that your mother is a "vulnerable adult at risk" - those are they key words that make social workers take action. You need someone to assess your father's house, and assess the type and amount of care that he is able to provide. If it's judged inadequate for a vulnerable adult at risk, he will be prevented from taking her home - or he will, if the system works as it's supposed to work.

I'd also say don't help your father to do this in any way. If he's determined, let him try to sort it out himself. I bet he will find that it is too much for him to manage.

[Meripenopause1]

Thanks Time40. I have managed to speak to the nursing home's new manager, who says she will try to initiate a Best Interests Assessment.
I've contacted my Dad to say that he will need to see what this brings and if he wants to try to find suitable care, he will need to sort it out as iIdon't support the decision. I suspect - as you say - that he will find this too difficult.

[Meripenopause1]

Well...My father has replied to me that he wants to bring my mother home. It is the only thing that will make him happy and can I arrange for 3 visits a day from the home help agency?
I am finding it hard to say 'no' to him. Should I tell him to arrange it himself?
Also, will the nursing home let my father take my mother home with 3 visits a day from an agency? What if the nursing home believes that my my mother needs full-time care? Despite all my interaction with various social workers and GPs over the years, I'm still non-the-fucking-wiser about how this will pan out!
Please advise if you have been in this sort of situation.

[hatgirl]

Given it sounds like the nursing home agree with you I wouldn't worry too much.

Because he doesn't have power of attorney he hasn't got any legal right to take her anywhere.

She may already have what is known as a 'deprivation of liberty authorisation' (DoLs) which allows the nursing home to keep her without her agreement (even if she hasn't objected to being there the fact that she also doesn't have capacity to agree either means that she should have one).

If the nursing home doesn't have a DoLS agreement in place for her they need to be getting one ASAP. This will trigger involvement from the local authority automatically and she will be assigned a social worker.

In these circumstances where there are disputes regarding what is in your mother's best interests here would be a series of meetings or conversations with relevant parties to determine a view of her best ineterests.

Your father can challenge the DoLs but in the circumstances you have described it's unlikely he would be successful.

[Meripenopause1]

hatgirl. Very informative and quite reassuring. Thank you.

[Furrycushion]

Yes, a DOLs should be in place for anyone like her to allow them to keep her there if she wants to leave. Your father should have a copy.

[glamorousgrandmother]

No advice just sympathy. My dad had promised my mum he would never let her go into a home and tried to cover up her symptoms of dementia for a long time. After refusing to eat for 5 weeks and being doubly incontinent she eventually went into a care home and was expected to die within a couple of weeks. She lived for another 18 months and my dad felt guilty all this time even when he had to go into hospital himself for heart surgery.

That generation took the 'in sickness and in health' bit very seriously and consider a 'care home' to be akin to going into the workhouse. It was a very difficult time for us all.

[hatgirl]

Glad that's reassuring and sorry you haven't got very far with social services so far. From their perspective though until your dad actually materially does something to try and move her rather than just talking about it there isn't a huge amount they realistically can do.

I completely agree with other posters as well though, short of making sure there is a DoLs in place I would otherwise be disengaging as much as possible from getting too involved.

Give your dad the number of the care agency you spoke to so he can take things further if he wants and you aren't perceived as 'preventing him', but otherwise be neutral and non-committal.

E.g

'Oh you will need to talk to the care home about that dad, they know more than me'

'Perhaps speak to mum's GP dad and see what they suggest'

and so on.

[HeGotManFlu]

i can understand why he wants her home but she is the number one priority not him which he can find hard to understand. What does she want, has anyone asked her where she wants to be and does she have the mental capacity to make a choice, if not she will need to be placed on dols as others have said and he will not be able to take her home. All I would do is ask for mum to have a capacity assessment, seek a dols if she lacks capacity and have a meeting with the carehome manager, social worker and your dad. If she wishes to go home I would write to social services safeguarding team expressing your concern that your dad has unrealistic expectations and that you believe she is vulnerable at home.

[annandale]

I wonder if he should or could move into the home with her. There are going to have to be more couple-friendly care settings in the future I think.

[Meripenopause]

Thank you so much furry, glamorous, Hegot, annan and (again) hat. My mother is non-verbal and cannot express a preference. I have sent an email to my mother's GP, asking if she can participate in any meeting set up by the nursing home regarding a Deprivation of Liberty Authorisation.
I'm going to talk to my Dad and explain that what wants won't be enough to allow my mother home, under the circumstances.

[Meripenopause]

annandale the nursing home is close to where my father lives. He goes every day to give her lunch. The staff in the home give him lunch as well and are very caring towards him. It's a nice set-up really and a shame he cannot see it...

[squirrelnut]

The home should already have applied to the local authority for a DoLS authorisation since your mother lacks capacity to consent to her placement. You could try calling the DoLS team in your area and explaining the situation and ask if they can provide a IMCA (independent mental capacity advocate) to advocate on your mothers behalf.

You may wish to look at homes which have double rooms / suites as an option for keeping your mother and father together. The cost will be huge and would have to be self-funded but it might be a good compromise? There are some great options these days (I work in the industry).

[Meripenopause1]

Oops! Username fail. Didn't realise I had a different name on my work PC...Yes I will try contacting the DoLS team in my father's area. He still thinks it is absolutely fine and some kind of health and safety nonsense. So I will have to let this run its course, I think.
I feel sorry for him all the same. Although many have it far worse, so he needs to think about that. The nursing home is pleasant, very close to his home and he is treated like a friend, given meals while he is there...

[Meripenopause1]

And thanks squirrel