What if PWD changes mind about care home?

[whatproblem]

I've read several threads on Talking Point about the problems of PWDs having difficulty settling into their care homes. I'm expecting a similar experience when my Mum (moderate dementia, mainly short-term memory loss) moves into our chosen home. I think I can deal with the heartache for both of us (it will be no worse than things are now), but there are a couple of details that worry me. The posters didn't mention these in the threads that I have read, so can I ask about them here?

1. What if PWD is self-funded, buys a care fees annuity and then refuses to move into or stay in the care home? Is there any way to get the money back (e.g. a cooling-off period)?

2. Do all the posters have a DoLS arrangement so that the PWD is locked inside the care home? My Mum still has legal capacity so a DoLS wouldn't be appropriate for her. Is it even a good idea to go self-funded into a care home without a DoLS?

I've been through many struggles to get this far, and I'm desperate to get Mum into a safe place (she's quite keen too) but I don't want to rush into a financial arrangement that might go wrong and lose a lot of Mum's money.

 

[Witzend]

My sister who had P of A arranged for a care fees annuity for our mother, but TBH it took quite a while to sort out - at least a couple of months after she went into the CH - while they did their sums (made their calculated bet) on how long she was going to live, based on age, medical records, etc.

It was a secure, dementia-only CH, which was necessary by that stage, but there was no actual DoL order for a long time.
As so often happens, my mother was often asking/demanding to go home in the early weeks and months, but to be frank there was no way on earth we would have taken her - she was only there in the first place because she was in urgent need of 24/7 care. And nobody else could have taken her - for a start it was 60 miles away (chosen at least partly because it was close to me), nobody at the CH had keys (and in the circs we would not have provided any!) and in any case the house was fairly soon sold, since the funds were needed to pay for her care.

If you think there's a real,possibility that your mother might return home during the early weeks or months, then I think you must ask the annuity provider to be crystal clear on their conditions in such circs.- with hefty sums of money involved you need to know precisely.
It's as well to bear in mind, of course, that even if she did return home, sooner or later her dementia might well deteriorate to the extent that a care home would be the only viable option.
All best wishes at what I know is such a worrying time.

 

[Sirena]

I moved my mother to a self-funded care home at the point when she was well past having capacity, I'd already been using my LPA for nearly two years to deal with her finances and care at home. She is late mid-stage and needs constant supervision, she is in a secure care home and as far as I know all the residents have a DoLS.

However there is a resident there who my mother is friendly with who seems fairly early stage, and who told me she chose to enter the care home so that her family were not burdened with her care. I have no idea about her financial arrangements but she loves the care home and doesn't object to being in a secure building along with all the other residents, many of whom have significantly more advanced dementia than her. She seems very contented and told me she is aware that she isn't safe to be alone. I imagine though that she has a DoLS and if she suddenly wanted to leave unaccompanied they wouldn't allow it. If it is genuinely a dementia care home, it needs to be secure for the residents' safety.

 

[Shedrech]

hello @whatproblem
I don't have any experience of such an annuity, though they have been discussed on TP - put just the term 'annuity' into the search box at the very top of this page and you'll see some of the threads listed
you'd need to be very sure of the terms of the contract, and that the payments would cover all future increases in fees
if your mum has few savings but a property, you might discuss a Deferred payment Arrangement with her Local Authority

 

[Kevinl]

Annuity rates do change so I will say this was 10 years ago. I asked an IFA the same question you asked, I was thinking a care home was the best option for my mum, so sell her house and buy an annuity but with the possibility that we may adapt the house in the future, my wife would give up work, could the annuity be paid to my wife? I was told not, it goes to pay for a care home and would only be paid for residential care.
She also advised that (at the time) if my mother did go into care then bought a standard annuity (not related to her care) then that would mean that if my mum ever left care the payments could continue and that if she bought the annuity while in a care home she could get an "enhanced" annuity due to her being in a care home as that gets you a higher pay out, possibly more than one specifically related to care home fees.
On the matter of the DoLS and having done it quite recently, the home it's not as easy as it used to be and is getting harder to get.
The procedure with my wife was that she was seen by a consultant psychiatrist, then an Independent Mental Capacity Advisor is appointed who also does an interview ( neither of which you will be allowed to attend) they send their reports to the MCA DoLS team who assess the information and make a decision. They will take to you and ask the staff in the home and ask if you want to be the Relevant Person's Representative.
The forms are quite eye opening, they have to decide
"I must consider the objective, subjective element and state responsibility include a balance chart. Storck v Germany (2005) clarifies that, in order to determine whether a person is deprived of their liberty within the meaning of article 5(1) of the European Convention of Human Rights, htree conditions have to be satisified..."
And so it goes on quoting the Mental Capacity Act then awards star in each of several areas giving stars for the positives and stars for the negatives. You don't just ask for a DoLS and get one and if your mother still has legal capacity and wants to go home you may not get one.
There have been stories on here about social services and IMCA's wanting to discharge people home against the family's wishes, it's relatively new but is happening.
Hope I didn't bore you
K

 

[Amethyst59]

Our case has been a little different. My husband is self funding, and is in an apartment within a care home complex. We signed an initial two week agreement, then a three month let, and he is now a permanent tenant. It is evidently possible to buy an annuity that caters for any future fishes in fees. We decided against an annuity as his income pretty well covers the fees, and the bulk of the capital can remain untouched for his children to inherit.
He does not have a Dols in place, but he has never asked to go for a walk alone. He has taken it for granted that it is ‘not allowed’ and we have not said any different. There are regular, planned walks and he has been told that any time he fancies a walk, a member of staff will keep him company as soon as someone is free. I would worry about him going out alone as his capacity and understanding comes and goes.

 

[whatproblem]

Thanks for all the well-thought-out advice, folks, and my best wishes to those of you that are going through a similar experience to mine.

Witzend (I know the feeling): I think it's very unlikely that Mum will demand to go home, or even know where home is, but she can be unpredictable and I don't want to leave anything to chance. As you say, I need to read the annuity Ts and Cs carefully.

Sirena: The home I have in mind has different units for different levels of capacity, from plain residential to full dementia nursing. Their assessor said that Mum could cope with the residential unit, although Mum was putting on her best show during the assessment. And Mum's dementia makes her quite a good liar! I think they would eventually move Mum to the secure area though.

Shedrech: Mum has enough savings to rule out a deferred payment arrangement. The SS have washed their hands of us! But I will search for other threads on the subject.

Kevinl: Thank you. I will look into the DoLS situation. The consultant who last saw her did not seem to think she was all that bad, but he did say that I should move her to a supervised place "as soon as possible". Perhaps the next expert who sees her will have a stronger opinion. As for the regular annuity, I don't think that will be affordable. Mum will need an "impaired life annuity" which I believe will only pay out to a care home and not to care visitors. However, in Mum's case I don't think that returning home is an option. She is fast losing her capacity.

Normaleila: Yes, I think maybe an initial stay might be in order before I arrange the annuity, just to see how Mum gets on. Paying 100% of the fees for a few months will be painful but might avoid a bigger loss later on. I'm hoping that she will adjust, and maybe even forget that she ever lived anywhere else. That's quite possible given the state of her memory.

It hadn't occurred to me that a better deal might be offered later. I suppose an older PWD is a better risk, from an actuarial point of view.

Amethyst59: I don't have the option of funding it all from Mum's income, unfortunately. But I hope that, as in your husband's case, the CH will manage to control Mum and stop her from going out. The trouble is, she looks docile most of the time but has flashes of defiance. Maybe with experience I can learn to ignore the defiant moments and wait until she gives in, and I hope the care home will do the same.

It's good to get all this off my chest!

 

[kindred]

Annuity rates do change so I will say this was 10 years ago. I asked an IFA the same question you asked, I was thinking a care home was the best option for my mum, so sell her house and buy an annuity but with the possibility that we may adapt the house in the future, my wife would give up work, could the annuity be paid to my wife? I was told not, it goes to pay for a care home and would only be paid for residential care.
She also advised that (at the time) if my mother did go into care then bought a standard annuity (not related to her care) then that would mean that if my mum ever left care the payments could continue and that if she bought the annuity while in a care home she could get an "enhanced" annuity due to her being in a care home as that gets you a higher pay out, possibly more than one specifically related to care home fees.
On the matter of the DoLS and having done it quite recently, the home it's not as easy as it used to be and is getting harder to get.
The procedure with my wife was that she was seen by a consultant psychiatrist, then an Independent Mental Capacity Advisor is appointed who also does an interview ( neither of which you will be allowed to attend) they send their reports to the MCA DoLS team who assess the information and make a decision. They will take to you and ask the staff in the home and ask if you want to be the Relevant Person's Representative.
The forms are quite eye opening, they have to decide
"I must consider the objective, subjective element and state responsibility include a balance chart. Storck v Germany (2005) clarifies that, in order to determine whether a person is deprived of their liberty within the meaning of article 5(1) of the European Convention of Human Rights, htree conditions have to be satisified..."
And so it goes on quoting the Mental Capacity Act then awards star in each of several areas giving stars for the positives and stars for the negatives. You don't just ask for a DoLS and get one and if your mother still has legal capacity and wants to go home you may not get one.
There have been stories on here about social services and IMCA's wanting to discharge people home against the family's wishes, it's relatively new but is happening.
Hope I didn't bore you
K

My husband had a deprivation of liberty assessment yesterday and although it was a farce, it was not that threatening. I don't think the psychiatrist has been yet. I was allowed to be there although i know from the other five capacity assessments (I mean, FIVE??) i am not allowed to speak. The assessor apologised for putting us through it, said it was evident OH had no capacity and a high level of needs and asked if there was anything I could think of he might like to be encouraged to do in the nursing home.
Is it legal to discharge someone home against the family's wishes? Would a best interest statement help here?

 

[whatproblem]

My sister who had P of A arranged for a care fees annuity for our mother, but TBH it took quite a while to sort out - at least a couple of months after she went into the CH - while they did their sums (made their calculated bet) on how long she was going to live, based on age, medical records, etc.

It was a secure, dementia-only CH, which was necessary by that stage, but there was no actual DoL order for a long time.
As so often happens, my mother was often asking/demanding to go home in the early weeks and months, but to be frank there was no way on earth we would have taken her - she was only there in the first place because she was in urgent need of 24/7 care. And nobody else could have taken her - for a start it was 60 miles away (chosen at least partly because it was close to me), nobody at the CH had keys (and in the circs we would not have provided any!) and in any case the house was fairly soon sold, since the funds were needed to pay for her care.

If you think there's a real,possibility that your mother might return home during the early weeks or months, then I think you must ask the annuity provider to be crystal clear on their conditions in such circs.- with hefty sums of money involved you need to know precisely.
It's as well to bear in mind, of course, that even if she did return home, sooner or later her dementia might well deteriorate to the extent that a care home would be the only viable option.
All best wishes at what I know is such a worrying time.

Update: Today my financial adviser told me that the annuity he's offering will continue to pay out even if Mum has to return home for some reason. The payments could be diverted to a registered domiciliary care agency or could be paid direct to Mum, although in the latter case they would be partly taxed as income. This makes the idea of buying an annuity a bit less scary. At least there's no risk of losing the whole lot. I will of course read the small print!

 

[Witzend]

My husband had a deprivation of liberty assessment yesterday and although it was a farce, it was not that threatening. I don't think the psychiatrist has been yet. I was allowed to be there although i know from the other five capacity assessments (I mean, FIVE??) i am not allowed to speak. The assessor apologised for putting us through it, said it was evident OH had no capacity and a high level of needs and asked if there was anything I could think of he might like to be encouraged to do in the nursing home.
Is it legal to discharge someone home against the family's wishes? Would a best interest statement help here?

This isn't going to help, but I've often wondered what would happen if some assessing official decided that a PWD should be allowed to go home, when the family knew 100% that the person needed 24/7 care which couldn't be provided any other way.
But I have yet to hear of such a case!

My mother's DoL assessment really was a farce! She was well into late stages by the time they got around to it, unable to understand or answer any questions. I had a call from an independent SW who told me she'd be visiting with a psychiatrist. I explained my mother's state of health and that was it, until about 3 months later, when the SW called me back to say that she and the psych. were satisfied that the DoLs was in order. I then had to tell her that my mother had died (at 97) a few weeks previously. The poor woman was mortified!

 

[kindred]

This isn't going to help, but I've often wondered what would happen if some assessing official decided that a PWD should be allowed to go home, when the family knew 100% that the person needed 24/7 care which couldn't be provided any other way.
But I have yet to hear of such a case!

My mother's DoL assessment really was a farce! She was well into late stages by the time they got around to it, unable to understand or answer any questions. I had a call from an independent SW who told me she'd be visiting with a psychiatrist. I explained my mother's state of health and that was it, until about 3 months later, when the SW called me back to say that she and the psych. were satisfied that the DoLs was in order. I then had to tell her that my mother had died (at 97) a few weeks previously. The poor woman was mortified!

Oh my dear! I am sorry. I have encountered this kind of dangerous stupidity in a different context. Many years ago, I was training to do a diploma in teaching children with severe learning difficulties. We had an ofsted inspection and clearly the inspectors had never seen children as profoundly disabled as these. Anyway, their recommendation was to stop shutting the doors of the classroom, give them freedom and integration. Well, to prove what they were sayin, they opened the doors. Hours later, we had all the children rounded up but the police were very ****ed off.