Anybody had, or has a family member in a care home?

[foxOneFive]

Hello all,

My mum has just gone into a care home with dementia. Of which after the 1st 6 weeks she will be charged around a grand a week.

Earlier, I heard a chat radio conversation on the subject, and a caller mentioned something called "NHS Continuing Healthcare"

As you do, I've googled it, and it seems that you can get your care home payed and it's not means tested?

I'm going to contact her local CCG next week as apparently the 1st port of call. Just wondering if anybody on here has been down this path and your experience?

Anyone else in my current situation if you don't know, there is a thing out there called "attendance allowance" that pays your family member around £370 a month, hope that helps someone

cheers all

 

[busby1971]

Whatever happens, best of luck with this.

 

[norfolkred1]

There is a long and interesting thread on Arsse. Lost my Mum to Alzheimer's a few years ago so can sympathise with the OP it a terrible disease and I'm sorry to say it gets a lot worse and loosing my Mum was a release for her and the family as a whole.

 

[Oldstacker]

We lost my MiL half a dozen years ago with dementia; the benefits system surrounding care is a total mess and awful to navigate. Although the local authority agreed they would pick up some of the bills they never did tell us how much they would pay and how much we would have to pay. After her final (terminal) stint in a care home (she had been in & out of hospital with various ailments) even the care home didn't know when & how much the local authority was going to pay them. Given the difficulties of running a care home as it is, the fact that they were not getting paid by anyone for her was really not helpful. In the end we paid several months worth of all the charges out of her estate, simply to be able to wind it up without the prospect that someone would come after us all for a part contribution months later. We never got any refund from the council... strange that....

I really feel for you &, frankly, it's one of the reasons why I really don't look forward to getting old.

 

[muttywhitedog]

Hello all,

My mum has just gone into a care home with dementia. Of which after the 1st 6 weeks she will be charged around a grand a week.

Earlier, I heard a chat radio conversation on the subject, and a caller mentioned something called "NHS Continuing Healthcare"

As you do, I've googled it, and it seems that you can get your care home payed and it's not means tested?

I'm going to contact her local CCG next week as apparently the 1st port of call. Just wondering if anybody on here has been down this path and your experience?

Anyone else in my current situation if you don't know, there is a thing out there called "attendance allowance" that pays your family member around £370 a month, hope that helps someone

cheers all

My mum has dementia but is still at home, with carers coming in 4 times a day. She gets attendance allowance, 100% council tax discount and her funding is based only on her savings, as she's living in her own home, so the attendance allowance + council tax discount just about covers her at-home care costs. In terms of care home funding, my understanding is that once someone goes into a home permanently then they start paying after a certain number of weeks - where my mum is (Wigan), it is around 12 weeks before charges kick in. If they are funded thereafter due to their assets being below £20k(?) then the council will pay a flat rate, but if you are in a more expensive home then its your responsibility to make up the difference.

Boris's plan to cap costs to £86k is only for the care - the accommodation charges for residential care are not included.

I wish you and your mum all the best.

 

[foxOneFive]

Thankyou all above for your kind replies.

As said it's a hideous disease and it's not until you have it in your family and do some research and realise just how many variations there are and how they are so different. My mum has DLB "Dementia with Lewy Bodies" Yep, I'd never heard of it either? Some of her earlier symptoms were hallucinations of which were bizarre.
The NHS have been really good (covid aside) Unfortunately she was living at home with family care and outside agencies, but over the last 12 months and 2 falls with 2 stints in hospital, each time she came out she deteriorated big time and she is beyond the care that we as a family can now provide.
Hence where she is now, in a care home of which she was sent from hospital (decent care home in all fairness)

I am determined "or should i say my sister" to check out the "NHS continuing healthcare" route as feel there is nothing to loose.

I will report back if any update, but not holding my breath.

Thanks all again.

 

[4mastacker]

My late mum had to go into care. When my sister contacted Social Services, the first question was "Who owns her house?"- the house had to be sold to pay for care home costs. IIRC, Social Services were prepared to pay for the first 12(?) weeks in care then it was up to the patient/family to provide the funding after that.

Fortunately, if that's the right word, my BiL who was switched on with care home fees found a care package in which a large cash sum from the house sale was paid up front to cover mum's care fees which meant there was no monthly drain on her remaining assets. That premise was based on the assumption that the up front fee would cover the first four years of residence as that was beyond the life expectancy of a person going into care. Thus if the person died before the four year mark, the company gained as any balance from the lump sum was not refundable. The plus side for the patient was, if that person lived beyond the four year mark, they didn't have to pay any more lump sums and there was only a small monthly admin charge (which was roughly half the monthly state pension). It meant mum still had cash from her house sale in the bank when she passed which covered her funeral fees.

My mum lived for seven years after she went into care so I suppose I could say she gained from the care package.

I don't know if such care packages still exist as it seemed to me to be a very generous arrangement, especially if the longer term life expectancy was good. It can't have been too bad for the care home either as the staff car park was always full of new, high end cars.

Best of luck in your search for good care for your mum.

 

[busby1971]

My Wife’s nan went into a home and her dad bought an annuity, unfortunately she only managed another six months before passing away.

And whilst I think average life expectancy in a home is only a couple of years, I would recommend this to anyone as it takes away a major stressor in life.

Im always surprised by the very expensive crackpot old age social care schemes the Govt make up that only ever seem to benefit those with nothing saved, when if they introduced a similar scheme it would share the burden around at a much lower cost to all.

 

[Dirge]

My mother has been in a care home with Dementia for around 7 years and Social Services have previously applied for "NHS continuing healthcare" on 2 separate occasions with no success, however the initial response seems to be refuse the application and wait for it to be challenged which Social Services never did. I have now found a private company which will start a new application, for a set fee, and to be honest I have been quite impressed so far although the proof will be in the end result obviously, however if I can reclaim the care fees I have have had to repay since my father passed away then the gamble will have been worth the effort. Happy to pass on the details if you message me, this company offer a free telephone assessment and advise that they will not take on cases that they cannot win.

 

[foxOneFive]

Thanks again to all above and Dirge.

My latest update. My sister rang the local CCG and said not taking calls, but in fairness was asked on voicemail to leave an email address and they contacted her the next day. It seems the 2 key words in my mums situation are "end of life care and fastrack"
They said she will have free care up to 16 weeks and will be assessed around then? still not sure if she is on the NHS continuing healthcare thingy? Currently it's free and we will just have to see what happens after the assessment .
(maybe in contact with you Dirge if it takes a turn for the worst)

 

[Talk Wrench]

Thanks again to all above and Dirge.

My latest update. My sister rang the local CCG and said not taking calls, but in fairness was asked on voicemail to leave an email address and they contacted her the next day. It seems the 2 key words in my mums situation are "end of life care and fastrack"
They said she will have free care up to 16 weeks and will be assessed around then? still not sure if she is on the NHS continuing healthcare thingy? Currently it's free and we will just have to see what happens after the assessment .
(maybe in contact with you Dirge if it takes a turn for the worst)

I guess there's people reading this thread who are also inwardly digesting the information and advice being offered.

Very happy you've found a resolution in very difficult circumstances.

Fingers crossed for you.

 

[Wobbly_Jon]

I feel you pain chap. I was in the same place a good few years back with my dad. He kept having TIA's (transient ischemic attacks) aka mini-strokes. After loads of tests they found he had vascular dementia, basically the TIA's were killing of bits of his brain and so the outward symptoms were similar to Alzheimer's. Anyhow as he lived near Manchester and I live near the Lake District we go him moved to a care home near us. Because it was a health related condition my local CCG paid part of the bills, around 30% if memory serves, it still left a fairly large hole in our bank balance though. Fortunately for all concerned my dad popped his clogs a couple of years later. Better for him as he didn't know one day from the next and better for me and Mrs WJ as we could get on with our lives. Couldn't fault the care home they couldn't do enough to help us through the whole thing even after he died, some of the staff came to the funeral. Even now some eight years on one or two of the staff still speak to us if we meet them on the street.
Best of luck chap I hope it works out ok and the suffering ends quickly and peacefully for all concerned.

 

[Dirge]

Thanks again to all above and Dirge.

My latest update. My sister rang the local CCG and said not taking calls, but in fairness was asked on voicemail to leave an email address and they contacted her the next day. It seems the 2 key words in my mums situation are "end of life care and fastrack"
They said she will have free care up to 16 weeks and will be assessed around then? still not sure if she is on the NHS continuing healthcare thingy? Currently it's free and we will just have to see what happens after the assessment .
(maybe in contact with you Dirge if it takes a turn for the worst)

No problem, hopefully I will know more myself over the coming weeks and will be happy to share.