Sister & I differ on whether our Dad should remain in a home

[User125179313]

My Dad is 87 years old. Physically he is still quite active although we can see his movements becoming slower. He has dementia (mild at the moment), he needs someone to remind him to take his medication, to cook for him, order repeat prescription, wash his clothes and clean. He never wanted to go in a care home but has been in one for just over a week now (it's a long story as to how he ended up there but we told him it would be temporary). He wants to be in his own place with a carer going to see him a couple of times a day. I've been looking at retirement flats (although I believe they can be difficult to sell). My sister thinks there is no point in moving him and the care home is the best place for him and we should do our best to keep him there. I'm not so sure as he has been very depressed over the past week. He has enough money to last approx 8 years in the care home but I don't know what will happen if he runs out of money. We have also lied to him about how much the care home is costing because he hates the idea of spending all his money on a care home (we have power of attorney) and I don't feel comfortable about continuing to lie to him. Not sure what's best to do but any advice or opinions appreciated 🙏

My mum went into an independent living flat in a care home. She asked him if he’d go with her but he refused at the time. But now she’s happy on her own (they had a difficult relationship) and doesn’t want him to live with her.

Can you rent a retirement place? That's we my sibling wanted to do. Maybe in turn rent out his home to cover his rent? Then no need to deal with hassle of selling the retirement flat?

I found the care home that was closest to me but you’re right that it could be it’s not the right one for him

It sounds like an independent living flat like the one your mum has would be a perfect solution fur him.
independence but still the support of a care home.

Could you find something like this for him? NOT where your mum is.

Where would he go @User125179313 it doesn’t sound like there are many options here.

He doesn't have to remain in the home that he's in at the moment.
He's self funding. You and he can choose where he he goes next.

My MIL's care home was lovely. No-one was in a wheelchair, though some were a little unsteady in the latter stages of their dementia.

Use this time to go and visit some more care homes. Find out if they have spaces and get a feel for the atmosphere and the kind of residents they have. Look for one that has an activities organiser and a warm atmosphere, and check their CQC reports. These places vary hugely.

And don't rule out ones run by the Council. My MILs council owned home (she still self-funded) was infinitely better than my mums BUPA one.

This stay is temporary. Look for a home that he'll be happier and more stimulated in for his future care.

This. I saw it many many times as a district nurse. The next thing is saying they want to 'go home' when in fact, they are already there.
Think long term. Safety is paramount and sadly, unhappiness often comes with the territory wherever they are.

His house has been sold.

If he was accepted into a retirement place (really unlikely) who would look after him on a daily basis?

I gave him his medication & food/drink. I’m not sure he would have done it otherwise. He washed & dressed himself but I had to take his clothes for washing (he had an accident in bed one night too). He went to visit my mum once & got lost on the way back to my house (because he doesn’t know the area). My uncle is of the opinion that he would be better back there. But I think that’s mainly because he is worried about him and would feel better if he was back there near him. My uncle thinks living in his own home with a live carer would be best. That’s quite common over there

As per @sandyhappypeople, he thinks he's managing because he doesn't see what he isn't coping with and others aren't there say to day to see it either.

How was he when staying with you? Was he safe to be left on his own during the day or night? Could he cook, take meds etc without you doing most of the memory related elements?

My DMil was at home with my DSil providing support with shopping etc and we didn't really know how bad things were till she ended up in hospital after a stroke. She really wasn't safe living alone as she would answer the door to anyone in any state of undress. She wasn't capable of going to the shops on her own, food (ready meals) was left in the fridge till the next visit and milk would be off but she wasn't aware.

After the stroke she was discharged to a care home and at every visit she would always want to "go home" but we told her she wasn't well enough, then 5 minutes later same conversation. As time went on it also became clear when she talked about home she was referring to her childhood home, not the house she had lived in for 60 years and raised her family in.

Your sister is being more rational - it is very hard to have to deal with I don't like it here I want to go home, but home doesn't exist anymore, and a new home in say supported living won't work either as it won't be "home" that he remembers, and as his condition worsens you will be faced with the same issues again. You need to help him find ways to get involved in activities and to settle. If it's a good home, they will also help to get him involved.

He thinks my Dad should stay over there. I think mostly because he is worried and wants him there. He wants him to buy a house there and have a live in carer which is very common there.

OP I used to work in a dementia care home.
If your dad has already had an accident at night in bed, has got lost in the street, and cannot feed himself reliably or take his meds without supervision, then his dementia is not early or mild.

And it will get worse.

If he was in his own place, with carers twice a day, who would discover his soiled sheets and make sure he was washed after he wet the bed?

He needs the level of care which can only be provided by a nursing home. Maybe not the home he's currently in, but a home nonetheless.

Has your uncle got any experience of dementia care?

Thank you. All the advice is much appreciated. I think I may have to accept a home is the best place for him. It’s just so heartbreaking to hear him say he doesn’t want to be there, and I don’t want him to resent me for keeping him there.

I thought looking at a different care home would be pointless but all the comments have made me realise that all homes are not the same and there may be one more suitable for him

Update changes things.

I would definitely stay in a home, but probably not that one.

A local one to me has a restaurant and bar. They have a sports room and have 80's nights, they do trips to the football and the beach and the theatre. Not a domino or jigsaw in sight.

I'm an adult social worker and DOLS assessor.

It's not your decision to make. Sounds like he has capacity to make the decision. And even if he doesn't, you a) will need someone to confirm that (e.g. a social worker) and b) need to respect his wishes and feelings and c) assuming that you have poa for health and welfare make a decision in his best interests (which 90% of the time is remaining in his own home) and finally d) use the principle of least restrictive option.

Let's say you and sis have POA & you decide to keep in the home, the home will need to apply for a DOLS a social worker and a section 12 doctor will be employed to authorise the DOLS and based on the info you've given, it would not be authorised. Meaning if he wanted to leave he'd legally be entitled to and the home stopping him would be unlawful (and could be considered kidnapping).

On the other hand, if he cannot remain in his own home, then moving him to another home of his own (e.g assisted living) may result in a noticeable decline in cognition due to lack of familiarity with location and surroundings.

It’s just so heartbreaking to hear him say he doesn’t want to be there, and I don’t want him to resent me for keeping him there.

That's a natural reaction on your part, and one which we all struggle with, those of us who have been in this situation.

Come and join the Cockroach Cafe threads on here. You'll get loads of support.

Have you read the OP's update?
The gentleman's house has been sold, at his request.

I had to find a care home for my mum earlier this year. The ones I visited were so different. One felt a bit like an institution and the residents just seemed to be sitting around and mgmt did not say much about activities.

The other was small and the mgr talked at length about the activities, how some staff had been there decades. Since my mum has moved in in May she has had at least one trip to the pub for lunch (three staff, three residents and I was invited too), a trip to the seaside which I also went in, craft sessions, a garden party, games events, singers visiting, armchair keep fit sessions every fortnight, baby showers for the staff, a local primarily school choir come in to do a concert, a staff member brought her toddler twins in to say hello, a dog came to visit for the afternoon, every resident gets a big birthday cake made for their birthday, for my mum's birthday she and I are having afternoon tea in the conservatory. She has dementia and barely knows who I am now but I can see she is well looked after.

And the place where mum is is cheaper than the one that felt like an institution! I think because it's a small privately run place rather than being owned by a nationwide provider. Go and check some others out to compare to where he is now.

Yes. Hence the "if he cannot remain in his own home" bit.

Exactly what the next move should be is dependent on the area they live in and what's available, but the fact remains that a DOLS would not be authorised and therefore the care home would be unable to stop him from leaving should he wish to.

We are the sandwich generation now op - god willing, we've helped our own children develop into competent, independent young adults but now our parents are slipping the other way - less independent, needing more supervision, eventually waking relentlessly in the night and all care needs required. As a pp wrote up-thread, 'today is the best day your father's ever going to have again'. Dementia is a worsening condition, and whilst sufferers may demand their independence we must observe, and sometimes make challenging decisions on their behalf, much as we would for a stubborn toddler. I don't want to infantilise your dad op, but, things will only get worse - his dementia is already causing him some safeguarding challenges and when things progress you will find yourself making the same decision but with much more reluctance from him.

For anyone who says 'let him go home with a carer' I can only assume they've never had to rely on carers visiting their elderly infirm relatives - despite their very best efforts they really do have the minimum time to do things - they won't have time to cook, do washing, anything more than the swiftest wipe of a worktop above their allocated healthcare duties - and who is going to have to do the rest? Do you have capacity for that OP? For the next 4,5,8 years?

Maybe my wording has given the impression that we’re forcing him to stay there but that is absolutely not the case. He went into the home voluntarily. We are only trying to encourage with what we think is best for him. The home did their own assessment of him before he moved in. They didn’t mention the DOLS assessment & we didn’t try to use the POA. I don’t think they would try to stop him leaving

I’m definitely going to join the thread. Thanks

The home is definitely big and 1 of 3 in London. I think a smaller home sounds like it could be ideal for him as he’s not very comfortable around lots of people either. It does feel like an institution

I agree with others that he has capacity and should in theory be supported to live as independently as possible, if that is what he wants. I have experience with my grandmother and father having dementia. My father sounds a bit like yours in that he is physically more active than others would be in a care home. He is in sheltered accommodation with Abbeyfield (they are a charity). They don't provide care but will facilitate carers coming in if necessary. We know this won't be sustainable for ever, and it does mean he needs more support from us than he might in residential care, but it's working at the moment.

With my grandmother - we did move her into residential care. She hated it, never settled, was abusive to the staff, and we were asked to move her. She went back home with a live-in carer, which in her case was about the same cost as the care home. I see that that would be tricky in your father's situation if he now has no home.

Echoing others about an assessment of his needs, and about exploring whether your local authority offers extra care housing.

My "in theory" above is that I do think it's worth asking him to give it a few weeks, given there is no easy option of him returning home. But if he doesn't want to, and has capacity, I do think you, with support from the LA, should look at moving him somewhere where he can have more independence.