Extortionate Carehome/Nursing fees

[redshank]

SnowWhite it is so true! All their worries, stress, hard work and commitment to ensuring that they had enough monies for buying their own home, providing for their families and then retirement almost feels like something completely insignificant now when purely based on their 'medical needs' or not as the case may be! If they had another disease or medical condition that is worse/different to this pure torture that is either Alzheimer's or Dementia would be supported by funding. Where is the 'fairness' in this?

Yes, there are very many of us Lizzie! My Mum was very cross at how much she had to pay out for her care because to her (and me actually) it is a massive amount of money. unlike your FIL she doesn't get "nasty" but it does upset her. When you think they paid their taxes and NI for all those years and now there's no help for them in their old age. I daren't even add up how much she's paid out in home carers (before she went into care) then her "care" home. The only crumb of comfort is that her hospital care has been free. The nursing home I have her name down for is about £800+ a week and I feel inclined not to even tell her as she will only get upset.

That generation HAD to budget their money carefully and my Mum kept a housekeeping book all her life until she was diagnosed with Alzheimer's. Every penny was accounted for as her and Dad never had any money over to save. They just kept their heads above water and no more and neither drank or smoked and the first holiday we had was when I was 16! Dad grew all our veg and fruit and Mum was a very good cook who could make a great meal from very little.

Yes, there are very many of us Lizzie! My Mum was very cross at how much she had to pay out for her care because to her (and me actually) it is a massive amount of money. unlike your FIL she doesn't get "nasty" but it does upset her. When you think they paid their taxes and NI for all those years and now there's no help for them in their old age. I daren't even add up how much she's paid out in home carers (before she went into care) then her "care" home. The only crumb of comfort is that her hospital care has been free. The nursing home I have her name down for is about £800+ a week and I feel inclined not to even tell her as she will only get upset.

That generation HAD to budget their money carefully and my Mum kept a housekeeping book all her life until she was diagnosed with Alzheimer's. Every penny was accounted for as her and Dad never had any money over to save. They just kept their heads above water and no more and neither drank or smoked and the first holiday we had was when I was 16! Dad grew all our veg and fruit and Mum was a very good cook who could make a great meal from very little.

 

[canary]

Actually, its not just dementia - people with MS, Parkinsons, Traumatic Brain Injury (and probably other conditions too) have exactly the same problem and are not funded.

I agree, though, it doesnt seem fair, but I doubt anything will change for the better.

 

[redshank]

Canary..it's tragic isn't it and so unfair and like you say I doubt things will change no matter what anyone says or does. The cap on care fees is also delayed now which we thought would help families too, is now 2020 having been pushed back 4 years. We can only support each other and that's what I've found on here. Understanding and listening to others and their stories is so helpful and helps with the stress of having someone with this dreadful debilitating disease.

Actually, its not just dementia - people with MS, Parkinsons, Traumatic Brain Injury (and probably other conditions too) have exactly the same problem and are not funded.

I agree, though, it doesnt seem fair, but I doubt anything will change for the better.

 

[Herewego]

Hi all

Interesting thread - we had all of this with my MIL who passed in 1999 and now I am about to go through this all again with my husband who was diagnosed earlier this year (although I have seen it coming since 2011).

In regard to MIL - she was hospitalised and then moved to a care home by SS (without our knowledge or consent) - they said she agreed to it - this from a woman who hardly communicated and was very confused - I don't think so! We sold her house, build on to ours using her savings/house sale, as soon as it was ready moved her in. Even that, the SS insisted on a meeting with me, said she was too frail and would die in a couple of months, that I would not be able to cope etal - well, took her to ours anyway, employed an au pair to be with her during the day (as I worked full time and was doing an MBA plus we had 4 kids all pre teen/teen age), in addition, I employed a care company to provide staff to get MIL up each morning, bath and dress her and care for her personal needs, they would come back after lunch and toilet her, the au pair would make sure she got lunch (meals on wheels was delivered) and then in the evening I would change her and get her to bed. Her medication was done by myself and the care agency/au pair depending on who was here when it was required. I would look after her entirely over the weekends.

This took a lot of organising, but MIL lived for 18 months with us before she passed, the children interacted with her, she ate her meals with us when we were here, the au pairs would take her out in her wheel chair when the weather was good - she sat outside in the sun and watched her son fix his car etc. I like to think that we provided a good quality of life for her while managing to do this with her own savings (and not spending it all!) while ensuring that at the same time it did not destroy our own family life but enhanced it.

Issues that can arise:
If she had been more aggressive, wandering (she had stopped wandering by the time she moved into ours), or perhaps more demanding then perhaps it would not have worked as well as it did - each patient is different and what works for one may not work for the other;
Had she not had a house to sell and then we could use that to build onto ours we could not have added on the two purpose build bedrooms with en-suites and a family room to provide the suitable accommodation for her and then pay for her ongoing care costs using her pension and savings;
After she passed, agreeing with the family how to split the remaining money and whether the addition to our house which she funded should/should not be included etal - would have been better to have agreed that upfront, but it was sorted without the brothers falling out!

We now have a home that is suitable for use for my husband when we get to that point however, I have said to the children that whether I can care for him at home or not will remain to be seen as to how this illness affects him. If he becomes like his mom, then definitely he will stay here and I will hire (as required) the additional care I will need as time goes on. If however, and as we suspect might be the case, he will become aggressive then who knows - will cross that bridge when we come to it. I am horrified at the cost of care as noted in this thread! If it comes to it, I will certainly try as hard as I can to keep him at home - we are fortunate that we have sorted out the house so if required as I understand it they can only use his % of it to fund his care, so I will still have somewhere to live and won't have to sell it.

I also thought tho' that the new rules state that the house can not be used as part of the calculation for what he has to pay for care home costs if his wife/partner are still living there - is that the case, or is it just that the money is still owed and then taken at the time the house is sold?

 

[njs44]

Have you read the book by Sally Magnusson, Where Memories Go? She gives a lot of information about how challenging it was to care for her mother at home. Obviously it is only one person's story and she had four sisters, I think, who all shared in the caring, as well as an army of paid carers. So her route would not work for everyone. I am an only child so there was no option for me to care for Dad myself.

My Dad was in a care home costing £800 per week when his behaviour became too much for them to manage. Although it was very traumatic trying to find a suitable home for him as the care home served 28 days notice, in the end the nursing home he is in now has turned out to be far better than I expected. The fees are £1000 per week but we get Funded Nursing Care and Attendance Allowance and fortunately he has a reasonable occupational pension. Even so about half of the fees each month are coming from his savings. I sold his house and we're using that to make up the shortfall. I have resigned myself to not getting any 'inheritance' but that's the way it is nowadays. Dad is 89 and with luck his savings and the money from selling the house should last another 10 years. I find myself wondering if he will still be alive then.

The advantage of a nursing home is that there are more qualified staff and in Dad's home, anyway, the care staff are good. I think the quaified nurses share good practice and the standard of care is far better as a result. I have heard horror stories from friends who have their relatives in care homes where the residents are very badly looked after. However hard it is, you may have to consider moving your relative if they are not being properly cared-for.

 

[ariadne17]

We have received a bill today from the council relating to the new nursing/care home that we've moved my MIL into. She was previously in a care home and has had to be moved into a changed behaviour unit as she's become aggressive and agitated. The bill has come today and it's costing us £5,000 per month!!! We've had a meeting today with the CPN relating to CHC and there's no way MIL will supposedly get funding as she's apparently not bad enough! Even though she's aggressive and agitated and doesn't have any idea as to who/where/what is going on. My hubby is at 30,000 ft and climbing! He can't believe that his Mum who was a nurse for over 23 yrs and worked her socks off now will lose her complete house to care/nursing fees and it will take only about 2 yrs before this happens. She's moved from a carehome that was costing us around £2,000 per month and this was probably better accommodation than now!! The new care/nursing home is so very basic, it has no pictures on the wall, her drawers are broken. The bed is basic and she sits in a chair in a room that desperately needs decorating and she's looked after by staff who most of them are probably paid minimum wage, probably apart from the one Nurse who gives her the one tablet per day!! All for £5,000 per month!!! I can't believe it. We are seriously considering our options! Should we take her out of the care home and get private nursing for her in our home?? Please does anyone have a similar situation. We are going to speak with the council tomorrow first of all.

Hi, you mention CHC...don't take what the CPN says as gospel. There is a very helpful website called Care to be Different. Lots of information as to how to apply/get CHC or go to appeal. Good luck.

 

[Boldredrosie]

I have just sold our family house and invested Ma's share so that she will be able to pay her care home fees (£4k a month) until she dies -- which I suspect is years away. £4,000 a month is a lot of money but actually works out at £5.55 an hour. I wouldn't work for £5.55 an hour let alone take care of someone as challenging as my Ma.

For her fee she gets a lovely sunny room in which I've put up a couple of nick nack shelves and some artwork she liked from home. She's an ensuite wet room, meals, snacks and laundry. Staff has remained remarkably constant in the 18 months she's been there and are respectful and kind to her and all the other residents. And the CQC just rated the home outstanding on three measures, good on the other two.

I can't imagine all those years ago, when my mother and father were watching their pennies that my dad could have imagined his estate would be handing over thousands to the care home industry and not passing it to me and his grandson, but that's the way the system works and he would have wanted his wife properly cared after, which I wasn't able to do.

 

[antichcrefusal]

We've had a meeting today with the CPN relating to CHC and there's no way MIL will supposedly get funding as she's apparently not bad enough! Even though she's aggressive and agitated and doesn't have any idea as to who/where/what is going on. ...... Should we take her out of the care home and get private nursing for her in our home?? Please does anyone have a similar situation. We are going to speak with the council tomorrow first of all.

I take it that you trust the CPN's comments to you about CHC funding...

First lesson is; don't.

I went through all of this, and four years after demanding a CHC funding assessment for my now late father I am still fighting for CHC funding as all the evidence availabloe four years ago and subsequently is that my father was entitled to it.

First of all you will have to battle to get an assessment to see if she is entitled to a CHC funding assessment. This will be done, and your mum will be declared ineligible. The assessors who do these assessments will have omitted important evidence as to the patient's needs. So you need to fight this.

When you are grudgingly given a CHC funding assessment, the same thing will happen. In my father's case, the multidisciplinary team and me agreed on his levels of need in several domains but after the assessment the nurse assessor downgraded his levels of need in several domains and so he was declared ineligible. This nurse assessor has been reported to the NMC for fraud and misconduct. Three years on, I have faced obfuscation, lies, attacks on my level of commitment to my late father and refusals to respond to emails and letters. At every stage of the process, staff involved will 'lose' documents, omit to mention key details in reports, try to minimise a patient's levels of need and ignore important medical evidence. They do this in order to save the NHS money and because they are too cowardly to accuse the government of cutting their budgets.

I am now in the latter stages of the appeals process and believe I will win. You simply must not believe what anybody tells you about her eligibility, but judge her condition and needs on the basis of the written evidence available.

 

[canary]

I also thought tho' that the new rules state that the house can not be used as part of the calculation for what he has to pay for care home costs if his wife/partner are still living there - is that the case, or is it just that the money is still owed and then taken at the time the house is sold?

That is quite true, but as soon as the spouse/partner dies, moves out or the house is sold then his share of the house will be considered

 

[fairylelephant]

We have received a bill today from the council relating to the new nursing/care home that we've moved my MIL into. She was previously in a care home and has had to be moved into a changed behaviour unit as she's become aggressive and agitated. The bill has come today and it's costing us £5,000 per month!!! We've had a meeting today with the CPN relating to CHC and there's no way MIL will supposedly get funding as she's apparently not bad enough! Even though she's aggressive and agitated and doesn't have any idea as to who/where/what is going on. My hubby is at 30,000 ft and climbing! He can't believe that his Mum who was a nurse for over 23 yrs and worked her socks off now will lose her complete house to care/nursing fees and it will take only about 2 yrs before this happens. She's moved from a carehome that was costing us around £2,000 per month and this was probably better accommodation than now!! The new care/nursing home is so very basic, it has no pictures on the wall, her drawers are broken. The bed is basic and she sits in a chair in a room that desperately needs decorating and she's looked after by staff who most of them are probably paid minimum wage, probably apart from the one Nurse who gives her the one tablet per day!! All for £5,000 per month!!! I can't believe it. We are seriously considering our options! Should we take her out of the care home and get private nursing for her in our home?? Please does anyone have a similar situation. We are going to speak with the council tomorrow first of all.

 

[Actaeon70]

I work in a care home for people with neurological conditions/brain injuries, and the fees are awful - most of our residents are paying £1500 to £2000 per week, and some aren't even funded for physiotherapy etc and are paying that huge sum merely for I think of as "warehousing" (food, drink, medication, basic personal care and a few activities each week.) It's appalling and I feel like the biggest hypocrite on the planet working there.

 

[ClaraSais]

Hi redshank
I have been thinking about this thread all day since reading this morning but have only got some time to myself tonight after my daughter has gone to bed.
I am really sorry for all the pain you are going through - I am/have been there.
I lost my mum to vascular dementia this summer. My dad meanwhile had a stroke in 2015 and because there is no care for him at home he has gone to a care home, where his emotional and mental needs are not met, just his physical ones, anyway, I digress.
Pops is self-funding, he inherited from his mum her property and savings, this has all gone as care is around £3,600 per month (I must add that my grandmother was a widow when my pops was only 4, she lived in a shack by the river and worked her fingers to the bone as a seamstress to buy her house, she relied on no-one). They are now after our home (of which I live in and have done on and off since 1984, and cared for dad before he left) which would leave us homeless and will break my dad. When I asked for a breakdown of this cost, I was given a vague answer that it paid for his care. There is nothing extra or special about his care, it's just that as a self-funder, you pay more than someone who is socially funded by the local authorities and has no money. It's a very very skewed and unfair system and Theresa May really needs to sort this out. It's painful enough effectively losing both parents. I have been given the option by SS to either care for my dad at home (I can't, physically or mentally, as I am not well myself) or get kicked out the house to pay for his care.
There are three things that you could (and I apologise if you have already) refer to:

1. Continuing Health Funding (CHF) which means the NHS pay for the care of that person, but, a person very rarely scores highly enough to get this. Dad didn't, even though he is reliant on someone for everything, he is disabled and double incontinent and his eyesight is going. Mum didn't either.
https://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/nhs-continuing-care.aspx

2. Call your local Age UK (they have been absolutely brilliant so far as I am still going through a long and exhausting battle which is making my health problems worse)
https://www.ageuk.org.uk/

3. Or, and I saw this on our local news only recently, where a late relative passed away (think it was Hampshire CC) and SS seemed more concerned about her care funding than her welfare. They mentioned a charity called Independent Age: https://www.independentage.org/

It really is disgusting, there should be much more funding directed at dementia and strokes.

I hope that I have been of some help - or for someone else, and best of luck x

 

[ClaraSais]

I work in a care home for people with neurological conditions/brain injuries, and the fees are awful - most of our residents are paying £1500 to £2000 per week, and some aren't even funded for physiotherapy etc and are paying that huge sum merely for I think of as "warehousing" (food, drink, medication, basic personal care and a few activities each week.) It's appalling and I feel like the biggest hypocrite on the planet working there.

Yes - my dad has had a stroke and pays a lot - he receives no physio or anything, nothing.

 

[ClaraSais]

It seems that once you are poorly and no longer of use to society i.e. paying tax and the government, you are forgotten about. My dad and gran worked so hard for nothing. It's heartbreaking. So where does all this money go? I know obviously staff, bills etc., but my friend said she accidently saw someone she knew paperwork who owned a home, there were four of them, and they were getting £50,000 a month each. So that was £200,000. I think care should not be privatised. Or at least, be more transparent about where the money is going?

 

[ClaraSais]

If anybody remembers that bit of news from yesterday regarding a lady and the way she was treated by Hants CC please let me know, I think she sadly passed away from cancer and they kept invoicing the relatives even though she had no money?

 

[ClaraSais]

We have received a bill today from the council relating to the new nursing/care home that we've moved my MIL into. She was previously in a care home and has had to be moved into a changed behaviour unit as she's become aggressive and agitated. The bill has come today and it's costing us £5,000 per month!!! We've had a meeting today with the CPN relating to CHC and there's no way MIL will supposedly get funding as she's apparently not bad enough! Even though she's aggressive and agitated and doesn't have any idea as to who/where/what is going on. My hubby is at 30,000 ft and climbing! He can't believe that his Mum who was a nurse for over 23 yrs and worked her socks off now will lose her complete house to care/nursing fees and it will take only about 2 yrs before this happens. She's moved from a carehome that was costing us around £2,000 per month and this was probably better accommodation than now!! The new care/nursing home is so very basic, it has no pictures on the wall, her drawers are broken. The bed is basic and she sits in a chair in a room that desperately needs decorating and she's looked after by staff who most of them are probably paid minimum wage, probably apart from the one Nurse who gives her the one tablet per day!! All for £5,000 per month!!! I can't believe it. We are seriously considering our options! Should we take her out of the care home and get private nursing for her in our home?? Please does anyone have a similar situation. We are going to speak with the council tomorrow first of all.

Sorry to keep rambling on ! But I must say that it was very very hard to look after dad even with carers at home, there is no privacy and it's very stressful. Because we are self funders we don't get any help from the council, you are expected to do all the paperwork yourself such as making sure the carers are registered for tax etc. Anyway, very best of luck x

 

[Actaeon70]

It seems that once you are poorly and no longer of use to society i.e. paying tax and the government, you are forgotten about. My dad and gran worked so hard for nothing. It's heartbreaking. So where does all this money go? I know obviously staff, bills etc., but my friend said she accidently saw someone she knew paperwork who owned a home, there were four of them, and they were getting £50,000 a month each. So that was £200,000. I think care should not be privatised. Or at least, be more transparent about where the money is going?

I may sound cynical but it probably goes into the directors' back pockets. It certainly doesn't go towards staff, and if you want money for better facilities for the home or for extra equipment a resident may need you have to fight like hell. It's wrong.

 

[Marnie63]

I work in a care home for people with neurological conditions/brain injuries, and the fees are awful - most of our residents are paying £1500 to £2000 per week, and some aren't even funded for physiotherapy etc and are paying that huge sum merely for I think of as "warehousing" (food, drink, medication, basic personal care and a few activities each week.) It's appalling and I feel like the biggest hypocrite on the planet working there.

Interesting to hear this from someone who works in an 'expensive' home. I'm always surprised when I read of people almost justifying the high costs of these places. They are not this expensive because of the running costs - they are this expensive because the owners are making huge profits. A friend of mine lives in the same road as the owners of a well known, local care home. They are expanding and building a brand new place in the area too. They are very, very wealthy. It's clearly a very profitable business to be in. How has care for the elderly/sick/vulnerable been allowed to get to this stage where on the one hand care home owners are making huge profits and on the other the clients/families are having their assets stripped so rapidly to pay for the care. It's disgraceful.

 

[Henry Ford]

My sister spent over £250,000 on carehome fees. In the last few years the council paid the 'top-up' nursing fee but she still paid £800 a week out of her own pocket. Initially she was in a convent run home which cost £1500 a week but as she deteriorated they would not keep her because they did not cater for EMI, despite the fact that she was absolutely quiet and never aggressive. That home was wonderful in the care she received. The last one she was in was brand new and not bad but the staff changed constantly and many were not motivated for care work.
My cousin had all of her care funded by CHC- carers at home 4 x daily plus special visits to help her bath 3 times a week. She was had a heart condition that her consultant wrote a letter to say in his view qualified for CHC funding and she got it. She had a lovely last year with her daughter, going out on trips and being taken great care of. She had very little money of her own anyway.
My sister had heart problems, kidney failure, bladder cancer , vascular dementia, could not walk, talk or even move, was doubly incontinent, could not communicate and was losing her swallow reflex but was assessed as requiring 'social care'.
It is disgraceful. There should be some cap on how much people pay eg £40,000 maximum.

 

[notsogooddtr]

Interesting to hear this from someone who works in an 'expensive' home. I'm always surprised when I read of people almost justifying the high costs of these places. They are not this expensive because of the running costs - they are this expensive because the owners are making huge profits. A friend of mine lives in the same road as the owners of a well known, local care home. They are expanding and building a brand new place in the area too. They are very, very wealthy. It's clearly a very profitable business to be in. How has care for the elderly/sick/vulnerable been allowed to get to this stage where on the one hand care home owners are making huge profits and on the other the clients/families are having their assets stripped so rapidly to pay for the care. It's disgraceful.

Because it's a business and the motivator is profit.Businessmen don't run care homes for the good of society.This is the type of society we've voted for over many years,the 'market' is God.We are reaping what we've sown I'm afraid