How can they do this?

We all have to face facts, unpalatable as they are.
Just over a year ago I was in the situation Libraryladywas in.I had been caring for my H for years due to his dementia.
He then had a major stroke, I was 81 and absolutely at the end of my resources.
I did have to let him go into care, although fortunately his dementia was so far advanced by then he did not understand.
He died from cancer ( we did not know he had it)
4 months later.
I should have got CHC according to the criteria, I did not even apply as I was told I would not get it.
I bitterly regret that now.

It is so sad ann and librarylady that these considerations should be sent to burden people who are in already distressing circumstances.

It is a system that needs overhauling from the bottom up - tear up the whole scheme and start again.

And there needs to be a recognition that this will cost money - it cannot be done without it. It is a matter of priorities.

Hetty58 plus Jennifer Eccles are correct. They cannot compel you to sell your home if you are over 60 and also your husbands saving are less than 23750. If his saving are just over this amount, I would if you have not already spend some of the money ie and this may sound hard pre-purchase a funeral. Personally I would make an appointment to see my MP ASAP and if possible before the election. Have you had a LA assessment? I also thought the post about continuing care was interesting and if that person knows more on this should perhaps post? I would certainly like to know more about CC bit can you get info on it? Never found any that spells it out in easy English.

I typed a long post and lost it a little while ago so I hope I can remember what I said.

Firstly, Librarylady, I apologise. Your post did seem unkind in the circumstances, but now you have explained why you posted what you did, it is understandable.

Lost it again!

I will try again.

Unless people do challenge the system, do challenge those who send out these letters without a drop of empathy, things will not change. Some LAs seem to interpret the rules differently to others and LGOs may be driven by team leaders who only have finances in mind.

Challenging this, going to MPs, Councillors, etc, may help everyone in the long term so I still think it could be the right thing to do. By accepting this, by accepting this type of unacceptable communication at a time of distress, accepting that the rules have been correctly interpreted, means it will just continue.

I am sorry that you and your DH have to suffer like this.

My heart goes out to you librarylady as well as Luckygirl.

The whole stinking mess of social care needs sorting. I think it is a big enough issue to deserve cross-party consensus otherwise, like the NHS funding, it becomes a political football.

Taxpayers money is being issued here.

Some people can afford to pay for care in old age and I’ll health. Others (some less fortunate to start with - some profligate by choice) cannot.

The situation ends to be addressed. What is fair? How can it be delivered? Is it even morally even right to charge when someone with terminal cancer at the end of life, or pneumonia is not?

This awful debate has been kicked into the long grass for too long.

We need to sort it out, fairly, once and for all.

Can we perhaps look at best practice in other countries? Raise a tax levy that is ring fenced for social care?

I don’t know enough about it all to have an opinion.

Others are living through the nightmare, right now.

I can understand Librarylady she is utterly exhausted. “Who cares for the carer”, nobody and as she said nobody asks either because you may want help. I note you were fast tracked for AA and hope you use this for help. This includes paying someone to sit with your husband while you go out for a coffee or perhaps the hairdressers as you do need to get away for your own sanity. You are still using the money for your husband as it’s to pay for someone to look after him. My father came to his wits end in April aged 92 after looking after my mother 24 hours a day it’s draining. My mother went into a home for respite and didn’t come out, guess who is left feeling guilty. Look after yourself.

Contact your local MP about this. I have done this in the past (a different matter) and they were helpful. They might be more keen to help in this time of elections. It is disgraceful and heartless to treat your husband like this, and you too.

Librarylady I have no idea why you should despise me for having no scruples in using my MP to help me.

Lots of good advice here. I'm so sorry you've got to endure this at such a hard time for you.

The care funding situation has been just like this for many years. People don't realise how truly dreadful it is until they're actively involved themselves.

The NHS and Social Services have become quite vicious in attempts at denying help and failing to meet their legal obligations. It's the direct result of dwindling funding and increased demand. For example (at risk of repeating myself) top up payments from family members are entirely optional. Only the person receiving care themselves has any duty to pay. There should be no pressure put on anyone else.

Social services are not, in fact, legally allowed to have a 'ceiling' amount (yet they all blatantly do - every area a quite different amount). Legally, they are obliged to increase the amount they pay to cover the care costs. They (very cruelly) threaten the prospect of a smaller room or a cheaper home instead, though.

The NHS use a checklist, then assessment (supposedly designed to identify those entitled to continuing care) to deny responsibility - by deliberately giving very low scores. It's as if you have to be almost dead to qualify now.

From experience, those involved sing a very different tune when a legal representative is present. That demonstrates what very thin ice they are skating on. Just when you are feeling low, you have to fight tooth and nail!

Yes, it's sickening that legal advice costs a fortune, even if it's recovered from saved fees. There are also costly 'lifetime care' policies where you pay a lump sum and gamble that you'll live long enough to profit, rather than lose. People choose them for peace of mind (understandably, but most lose, of course.

The whole scenario is a living nightmare for distressed relatives. They just want decent care for their loved ones. It was quite a shock to discover that the 'nice' homes locally cost £70,000 a year - for simple board, reasonable food and basic personal care. Nursing care costs more.

The reality of 'care' in the luxury home bracket:

There aren't enough staff - especially at night (no minimum number)
They're paid minimum wage
Food is OK - nothing special (budget? £25 per week)
Mistakes are made (and covered up)
Accidents happen (ditto)
Residents are sometimes neglected
(and worse)
The majority of fees are spent on accommodation and wages, rather than 'care'.
Fees are still payable (with a tiny reduction) when the resident is in hospital - and for two weeks after death.

Disgusting really, isn't it?

When my H was in hospital for 4 weeks before he died there was no reduction in fees at all.
I argued for weeks after his death as the care home never had any intention of having him back.
They had told me 2 weeks previously that they could not meet his needs and I needed to find somewhere else for him.
At the first opportunity the sent him to hospital and he never went back.
They had several empty rooms so were able to say they kept his room for him.
Until you are involved in this world you truly have no idea what it is like.

Have you spoken to Citizens Advice? They are really good at giving objective advice.

I'd think carefully before selling your home unless you are sure you will be able to live somewhere suitable for perhaps several more years.

I also believe you can get down to £23K worth of savings.

Hetty and ann have hit the nail on the head.

I am very philosophical about the rubbish hand that we have been dealt - why not us? It is just the way of the world. But I am not the least bit philosophical about the so-called "services" making life more difficult.

I found this interesting:

(extract from summary) 'England has the ‘harshest’ means test of any country included, exposing a larger proportion of people at a lower threshold to out-of-pocket payments for care'

www.incisivehealth.com/wp-content/uploads/2018/08/international_comparison_of_social_care_funding_and_outcomes.pdf

I had one of those letters from DWP today and my OH, similarly to librarylady, pointed out that it was just a standard letter and I shouldn't get upset about it. He was right, I understand that, but, like Luckygirl, I did. This uncaring and downright rude letter was the final straw due to
(1) all the guilt I felt about leaving my relative in a care home,
(2) the bone-weary exhaustion resulting from caring for my relative while fighting daily for attention from a SW, who had her own huge workload and problems I completely understood (and who came through for us in the end); not sleeping; trying to keep all the other balls in the air; and overwhelming continuous worry and grief
(3) finding money to pay 'top-up' fees for a care home (and yes, I understand too that we need to be careful with public money and stop my relative's benefits, such as attendance allowance, for care the home is now providing, and also that while we cannot be made to pay the top-up fees my relative would be moved to an unsuitable care home that was within the local authority 'ceiling' if we didn't).
(4) the frustration that every step of the way is a struggle and a battle with endless paperwork
(5) generalisations like 'people who have worked all their lives fund the care of others who don't'. My relative worked hard every single day of their life for more than 80 years, caring for others, but was an unpaid 'slave', not able to earn money due to their circumstances. 'People who have worked all their lives' (like me, actually) should maybe reflect that people like my relative in lots of ways allowed them to go out and earn money for themselves.
We always say come on GN and vent. Luckygirl is doing just that, I think, without really expecting any solution, and she and librarylady have my heartfelt sympathy. The only practical thing I can suggest is that our SW, and the home itself, said that care home fees can be negotiated down sometimes, and what you are expected to pay Luckygirl does seem excessive. Perhaps you can negotiate directly with the care home before you consider which path to take.

justwokeup that is such a wise and good summary of it all

Do they stop attendance allowance altogether if a relative goes into a care or nursing home? Surely the allowance should be paid to the home?

If you are totally self funding the allowance is still paid.
Any help from SS and it is stopped.

What we desperately need is a simple system that works, perhaps similar to the German or French ones. We'd all pay into it and it would be ring-fenced for care.

I believe that roughly one third of us (our kids, grandkids too) will end up needing long term care so OK, it cannot ever be entirely 'fair'. Some will never need it but we'd have the essential peace of mind of knowing it was there if and when needed.

Can really feel for you,it’s not about the people but the money. I hope you can find some kind of answer to this, best of luck

My heart goes out to you, I’ve been through similar things with a close family member who had to go into a home. It’s all about money this person self funded for almost 6 years, when first went into the home I had a letter as I was his next of kin saying sorry to hear so n so has passed away had the correct name but you owe us such and such, Wrong! Nobody owed anything, he was very much alive!!, when I read your post my stomach churned for you, I know all to well how heartbreaking it can be, I wish you all the luck in the world with this situation,

Yes Callistemon, the AA gets paid to the home along with SRP minus about 24£ per week which is allowed for the person to spend on a weekly basis. The AA and SRP go towards the care costs along with any private pensions belonging to the person who goes into care. This is calculated along with savings up to 23250 to decide the LA top up. I think you should look into continuing care as this is paid by the NHS as opposed to the LA.

I sympathise as a similar situation hit my father this year and now he has to keep a large house and heat it on his own. My mother has passed away now. It’s bloody difficult, we have been through this, this year. Have you checked about pension credit? They cannot make you sell your home to pay, that I know for sure. It’s just do you want to stay in a great big house on your own? My father does so...

Being responsible for the dementia care, like most people, happens when you are perhaps older and physically and mentally exhausted.
I have several under bed boxes containing the paperwork regarding my husband's dementia.
I will not dispose of it until I get over the whole experience.
I understood the illness, millions go through that. What I couldn't understand was the beaurocracy, so complicated.
It was a long torturous 5 years. All I can say is that I survived.
What would have been great would to have had a dedicated mentor to guide one through the whole process, someone to refer to.
There were so many agencies- I was dizzy. Keeping a record of every thing was a nightmare.
Also my Christmas wish wish would be a really good public campaign showing the complications of the illness. Adverts, showing the inconsistencies of behaviour and making people listen to the carers.
Some of my worst experiences were with people who should have known better.
To illustrate, my husband desperately needed the toilet when we were in a charity shop. After the manager explaining that they were not insured to let him use the toilet. When he started to wet himself I just broke down. They let him use the toilet. I had to cut short our outing and get him home.
The public should be aware that one doesn't know when the incontinence starts.
There were many instances of poor understanding.
8 years on and life is good again.

CoolioC
Sorry but your statement is misleading.
The facts are not as you state.
I need to get my papers out to say exactly what happens but AA is stopped as soon as someone enters a home, I was never aware of it being paid to the home.

AA continues to be paid for 4 weeks after entering a home. It continues after then if the resident is totally self-funding. However, if you receive any contribution at all from SSD (even if it is less than the AA!!) then AA is stopped.

I think it should continue if you are providing a third party top-up, as this is in essence a chunk of the cost which you are self-funding - unless of course it is being paid by a millionaire relative.