Taking someone OUT of a care home

[mmaarrkk]

When my mum was diagnosed with dementia we organised LPAs for both my mum and dad. After mum died, we went through hell for a few months before dad was also diagnosed with mixed type dementia - we didn't understand that his behaviour was caused by an illness: he was aggressive and demanding. Also, he would wander round neighbourhood causing problems for neighbours etc. In short, he was a handful. Eventually he had a fall and ended up in hospital with a dislocated shoulder. We arranged for him to be discharged to a care home where he has been for 18 months. We managed to get CHC funding which has so far saved him about £50,000. The funding was recently withdrawn because dad's behaviour has calmed down drastically. The withdrawal of funding and his radically changed behaviour - he sleeps a lot of the time, his mobility is severely reduced, he is no longer agitated, distressed and aggressive - led me to reflect that we could now probably manage my dad at home. I am sure his living conditions would be better - his home wouldn't smell of pee, he wouldn't be surrounded by people with dementia, his clothes wouldn't constantly get lost, he would get home cooked meals, he would be with his family.
However, I have a horrible paranoia that the Social Services and the care home will try to keep him in the care home as a self-funder. Could they do this? What can I do to make it less likely that they could?

 

[Cat27]

Welcome to DTP @mmaarrkk.
Personally, I wouldn’t risk taking your Dad home. It takes a whole team of people now to keep him happy & settled. A disruption could change everything. Dementia is a constantly changing illness so who knows what is next.

 

[Shedrech]

hello @mmaarrkk
welcome to posting on DTP
given that CHC funding is incredibly difficult to get, your dad must have a high level of care needs, even if the funding has recently been withdrawn (might you appeal that decision?) which may mean that his needs have reduced or at least that they have been assessed as reduced
it may be that your dad is more settled because his needs are being met by the care the staff provide, and lack of mobility itself can be a real issue
personally, I would talk with the staff and the home's manager about how it might be possible to meet his needs in ypur home ... this would be a 24 hour a day task, which currently is undertaken by a team of carers who go home to rest after their shift
it's unlikely that losing the funding would be an issue for Social Services, your dad would be self-funding 'at home' ... and the care home will no doubt be able to fill the empty room almost immediately ... however both may well be concerned that your dad's care needs cannot be met by care at home, and Social Services could call a best interests meeting to discuss that
if you have concerns about the care home, raise those with the manager, who may well be able to address them
you mention home cooked food, which sounds desirable but please check about your dad's dietary requirements and his ability to deal with a typical meal
I'm sorry to appear negative ... many of us have had the thought that we could cope with our parent or partner back at home, only to rethink and realise it's what we want but not in the best interests of the person themselves

 

[Beate]

"His mobility is severely reduced" - how is that dealt with in the care home? Does he need a hoist and two people to wash and change him? Often you cannot simply reproduce those conditions at home. Most people with dementia in a severe stage need observing round the clock to make sure they are safe, they need input from doctors, district nurses and other professionals.

Of course I don't know what his care home is like but I can't imagine the food being totally inedible, plus they have experience with softer food etc which you might need to learn first.

In short, please think about this carefully and don't just take him home because it's the cheaper option. You might pay with your sanity instead!

 

[canary]

I would be very cautious about taking him home. If you do so you will have to convince SS that you will be able to meet his needs at home.

First of all find out exactly what his needs are - especially during the night. Night care can be a killer.
Would you have to hoist him? Would you have to change his position every 2 hours? Does he require a wheelchair and if so, is your house suitable for a wheelchair? What is happening about bathing/showering - does it require a wet room? Im assuming that he is incontinent, so you would have to change and clean him and if he is not able to assist in any way (I mean by moving position the way you want) it can be a 2 person job. You will undoubtedly need carers in to assist you, but what happens if he needs changing just after the carers have been and gone? Does he require a soft/pureed diet and would you have to feed him?

Then there is the social/behaviour side. Would he get agitated if he were left in his room? Will he need constant reassurance? Does he sundown and need extra medication at that point? Is he likely to call out during the night and get you up and down for no apparent reason? Does he resist personal care? - trained carers are taught techniques to get PWD washed/showered, changed and dressed with minimum fuss, but for most of us it is a daily battle.

These are all the sort of things to ask the care home and to think about. Im sure I havent covered everything.

 

[Palerider]

When my mum was diagnosed with dementia we organised LPAs for both my mum and dad. After mum died, we went through hell for a few months before dad was also diagnosed with mixed type dementia - we didn't understand that his behaviour was caused by an illness: he was aggressive and demanding. Also, he would wander round neighbourhood causing problems for neighbours etc. In short, he was a handful. Eventually he had a fall and ended up in hospital with a dislocated shoulder. We arranged for him to be discharged to a care home where he has been for 18 months. We managed to get CHC funding which has so far saved him about £50,000. The funding was recently withdrawn because dad's behaviour has calmed down drastically. The withdrawal of funding and his radically changed behaviour - he sleeps a lot of the time, his mobility is severely reduced, he is no longer agitated, distressed and aggressive - led me to reflect that we could now probably manage my dad at home. I am sure his living conditions would be better - his home wouldn't smell of pee, he wouldn't be surrounded by people with dementia, his clothes wouldn't constantly get lost, he would get home cooked meals, he would be with his family.
However, I have a horrible paranoia that the Social Services and the care home will try to keep him in the care home as a self-funder. Could they do this? What can I do to make it less likely that they could?

A very difficult situation for you, I am lucky enough not to have mum placed into care just yet. I can understand your plight, but if as you say he was a handful before the fall and CHC care post fall, how will you manage at home with no CHC funding? He will be at the mercy of whatever SS can provide once he goes home. Difficult for you, but do go home and reflect before you come to a decision, either way whatever you decide in the end -so long as you are sure.

 

[mmaarrkk]

Thanks everyone for the advice and considerations. I wonder whether someone could focus in and address the specific question:

I have a suspicion that the care home has a vested interest in keeping my dad as a resident as a self-funder. I fear they may bend the ear of the social worker. I have a horrible paranoia that the Social Services and the care home will try to keep him in the care home as a self-funder.
1. Could they do this?
2. What can I do to make it less likely that they would succeed?

 

[Shedrech]

hi @mmaarrkk

I mentioned in my previous post that it's unlikely that the care home will be overly concerned at the financial side of a resident moving out ... they will have a waiting list, most probably, and given the demand for 24 hour residential care will likely be able to quickly fill the room with another person who is self-funding

they and Social Services are, however, likely to be very concerned that a family are moving a resident out of a home unless they are satisfied that the person's care needs will be fully met ... so, showing that all of your dad's care needs have been considered and everything necessary has been put in place would make it possible that you may succeed

 

[jaymor]

SS will be looking to see that your Dad gets the level of care he needs. As you are self funding then you can bring in as much care as you wish and I’m sure if you can satisfy them you have that level of care in place and facilities to to allow care to take place they will be happy for you to care for your Father at home.

 

[Cat27]

I think you need to be honest with yourself about what is in your Dad's best interests?

 

[nitram]

I have a horrible paranoia that the Social Services and the care home will try to keep him in the care home as a self-funder.
1. Could they do this?
2. What can I do to make it less likely that they would succeed?

1) Obviously they can try , saying it is in his best interests, SS have a duty to see that he is adequately cared for.

2) As he is self funding, and assuming you have H&W LPA, you can move him home and fund an appropriate care package.

From what you have said this package may be both difficult to provide and very expensive

 

[mmaarrkk]

I think you need to be honest with yourself about what is in your Dad's best interests?

I think I know what you're getting at. You're right, on reflection, my dad would probably get more comprehensive care in the care home. It's just a shame that both my parents succumbed to one of the cruellest diseases there is, and on top of that their scrimping, saving and sacrificing (my mum was a cleaner and my dad an ex miner and factory worker) over many decades to leave something for their kids was just a pointless waste of time. But hey, that's just me being selfish - in fact I don't understand why I was moaning about CHC funding. Surely everyone should be saving to fund their own later life care, rather than blowing all their money on cigs and beer and then expecting the state to pay for it.

 

[northumbrian_k]

You sound very bitter @mmaarrkk and for all I know you may be right to feel that way. But please remember that the replies to your post are from people who are genuinely trying to help by giving you advice based on their own experience. Whatever you decide to do, I hope that it works out as well as possible for all concerned. You'll get support from the members of Dementia Talking Point whenever you need it.

 

[Latitude]

It's a very tricky situation as we have found. And reading others' accounts shows just how many variables there are to support services. I hate my PWD's care home. No bath or shower in 8 weeks. But from the snapshot of what people are going through with their loved PWD at home have shared I'm grateful that my lovely PWD is not at home because there is no way I could cope or manage their physical care.

Despite being self funding it seems the world and his dog and everyone else is determined to keep my beloved PWD in a particular home and making it impossible for us to move them to our chosen one despite it meeting all their mental health and physical needs. They are now refusing on the grounds of it being in their best interests not to be moved and watching them deteriorate rapidly every day is soul destroying. I really cannot believe the lengths SS and this home are going to. Have they asked my PWD what they would prefer?. No. Not once. My new comfort is the Dementia is now so far advanced and their refusal to eat and drink must mean the end cannot be far away. This awful awful ravaging disease that so many of us witness on a daily basis is so cruel. I'm heartbroken. But think long and hard over this decision. There are always options.

 

[MaNaAk]

Yes! Mum and Dad saved for us children as well but you can't always predict the future. Of course my brothers moved out and I stayed here. My mum passed away in 2008 and a few years later dad became forgetful with Alzheimers symptoms showing in 2015. In 2018 I put him in a home as I felt it was getting more difficult to cope with caring for him and both his consultant and paramedics told me that he now needs residential care.

Both my invisibles were against this with one saying that I put him in care without their permission. He lives 150 miles away and I did keep updating him. They both showed me plans to get him back and my heart was full of dread everytime I saw these because I knew I couldn't look after him. I had already gone down with shingles and if I had dad back something else would have happened. As Beate says you could end up paying with you sanity and as others say you should consider appealing.

The choice at the end of the day is yours we are just giving you our personal experience.

MaNaAk

 

[katydid]

"His mobility is severely reduced" - how is that dealt with in the care home? Does he need a hoist and two people to wash and change him? Often you cannot simply reproduce those conditions at home. Most people with dementia in a severe stage need observing round the clock to make sure they are safe, they need input from doctors, district nurses and other professionals.

Of course I don't know what his care home is like but I can't imagine the food being totally inedible, plus they have experience with softer food etc which you might need to learn first.

In short, please think about this carefully and don't just take him home because it's the cheaper option. You might pay with your sanity instead!

I so agree with Canary,sost re care needsMy husband has been in a care home for one night, and I don’t know how I cared for him at home,
Yesterday hours, two carers, Plus a third talking to him, etc. Etc., QA
Appeal against curtailment of CHC.

 

[katydid]

I so agree with Canary,sost re care needsMy husband has been in a care home for one night, and I don’t know how I cared for him at home,
Yesterday hours, two carers, Plus a third talking to him, etc. Etc., QA
Appeal against curtailment of CHC.

Sorry should say hoist. Not hours,!,!

 

[Bod]

When my mum was diagnosed with dementia we organised LPAs for both my mum and dad. After mum died, we went through hell for a few months before dad was also diagnosed with mixed type dementia - we didn't understand that his behaviour was caused by an illness: he was aggressive and demanding. Also, he would wander round neighbourhood causing problems for neighbours etc. In short, he was a handful. Eventually he had a fall and ended up in hospital with a dislocated shoulder. We arranged for him to be discharged to a care home where he has been for 18 months. We managed to get CHC funding which has so far saved him about £50,000. The funding was recently withdrawn because dad's behaviour has calmed down drastically. The withdrawal of funding and his radically changed behaviour - he sleeps a lot of the time, his mobility is severely reduced, he is no longer agitated, distressed and aggressive - led me to reflect that we could now probably manage my dad at home. I am sure his living conditions would be better - his home wouldn't smell of pee, he wouldn't be surrounded by people with dementia, his clothes wouldn't constantly get lost, he would get home cooked meals, he would be with his family.
However, I have a horrible paranoia that the Social Services and the care home will try to keep him in the care home as a self-funder. Could they do this? What can I do to make it less likely that they could?

Lets look at the costs of having him at home.
You will need staff, at least 4 to cover 24/7. Agency's will insist on at least 2 carers being present during any hoisting. (Your help would not be covered under their insurance.)
Or you employ carers direct, you'd almost certainly need an Accountant, to keep track of Nat Ins, Income Tax, Employers Liability insurance, pensions etc.
This is all on top of extra food/laundry/light & heating/water bills.
House adaptations. Down stairs bedroom & wet-room(with accessible toilet) Hoist track, at least from bed to toilet.
Then when his funds run out, the L.A's normally will only pay for the lowest cost, to meet his needs. Which could be below your on-going costs. (Due to economy of scale, Care Home costs per room are lower.)
The hard reality is that by the time the house has been altered, his time left to use it, might be very short.
Finally. Is it really in his best interests to move him from where he knows, to a strange new environment, where he knows nothing?

Bod