Am I right that most elderly people must self-fund care if they have assets?

Please continue to ignore them!

It’s popular to think (and say!) that they are all hellholes, but those we have experience of (my DM, my FiL, and an aunt) were all very good, and I might add, by no means the most expensive.

We did look at a good many before choosing, though, and there were certainly some we wrote off pretty quickly for various reasons. One of which was very smart decor in the public rooms, presumably to impress relatives who were choosing, but old fashioned bedrooms down a maze of narrow corridors (a converted hotel) and a general impression that the owners (a consortium of doctors, we were told) were concerned rather more with ££££ than anything else. It would have been totally unsuitable for DM, but they were perfectly willing to accept her.

IMO the fact that my DM was in hers for very nearly 8 years, until she died at 97, was a testament to the very good care she received. It was an Abbeyfield, purpose built for dementia.

AFAIK there are quite stringent rules for continuing health care, and I really don’t think they cover what are called ‘social care’ needs, those that are associated with dementia. So, help with washing, dressing, ‘toileting’ as they like to call it, maybe with eating and drinking, and just someone there 24/7, to reassure or soothe the common anxiety/fretfulness.

This is the nub of the problem with CHC, because medical and social needs meld one into the other and can be hard to distinguish. This is why the criteria are so stringent and detailed - very boringly so! And this is also why proper impartial advice is needed to get it right.

CHC is basically a continuation of the NHS Act which says that people are entitled to medical and nursing care free. So it is trying to draw the line as to how to define this need in all settings.

The medics, nurses etc. around the patient and family in the main have no clue about CHC - why should they? It is not their area of expertise. But it is they who do the initial brief assessment and decide whether it should go on to a full application. And this is where the system fails at the first hurdle.

I have heard them say: "You cant get CHC if you have dementia", "You can't get CHC if you live at home", "You can't get CHC in a residential (as opposed to a nursing) home", "You can't get CHC if you have a spouse at home" You can't get CHC unless you are terminally ill", " You can't get CHC unless you are completely helpless." - and so the inaccuracies go on.

This is why you need to turn to outside advice BEFORE you go down the road of the initial assessment, which often takes place on the ward. If this is proposed then go and get the right advice before agreeing to this. I have highlighted Beacon several times upthread because they are free and I can vouch for their effectiveness and the fact that they in no way tried to pressure me into the paid area of their service, which other CHC advice organizations tend to do.

The system is wholly unfair at present - two people with identical needs can gat CHC in one area and not in another. And people between whom there is the very tiniest of needs - one gets it and the other not. So one gets it all free, and the other gets financially assessed and has to make a contribution/pay for it all/sell their home etc. I am not saying that means testing is wrong per se of course; just that there needs to be a fair system.

In my view the whole system of funding for care for the elderly and/or disabled needs a complete overhaul to remove the distinction between medical and social needs and to have one comprehensive and fair system for all. Millions are spent on CHC assessments and appeals - a whole level of expenditure that should not be needed.

AFAIK there are quite stringent rules for continuing health care, and I really don’t think they cover what are called ‘social care’ needs, those that are associated with dementia. So, help with washing, dressing, ‘toileting’ as they like to call it, maybe with eating and drinking, and just someone there 24/7, to reassure or soothe the common anxiety/fretfulness.
None of which need actual nursing care from health professionals.

OP, as I know from far too much experience, there will often come a point with dementia, when it’s just too exhausting/stressful to cope with in an ordinary family setting. Some people will often try to make you feel bad, by saying e.g. ‘ ‘Oh, I could never put my parent in a home!’

Almost invariably, they will have no clue as to what it’s like trying to cope with dementia 24/7. So do please ignore any such pious, sanctimonious remarks.

I am so sorry you find yourself in this position of almost having to choose which parent to listen to.

You’ve all been focussed on mum as the one with the care needs but there is a tipping point where caring for the carer(s) becomes most important because looking after mum is dependant on the carer(s) being able/ well/ willing.

Can you/ have you said to your dad that you are (or becoming) too unwell to continue the care you’re currently providing and it’s not safe for that to continue the choices are: paid care at home or care home which would he prefer?

I do really appreciate that it’s so hard for you all, especially made harder when you know there are others ways to help but one party will not entertain the idea.

It may well be a good idea to look at care homes yourself and find a couple that you like just in case/ to be prepared.

All the best to you.

This, and other similar posts, are why it is essential to get proper advice about CHC because every day people are being given misinformation from the professionals around them. Dementia is a medical need and CHC is payable if they have other medical problems than purely cognitive, which often does happen in dementia. Each person needs assessing individually and many people with dementia do qualify.

My father was on end of life care, totally bedridden, totally incontinent, unable to feed himself or even hold cutlery or a drink, unable to swallow tablets and had rapid onset dementia (20weeks) leaving him not knowing me or my mum and they said because he was stuck in bed and was compliant ( I kept telling him to be good and do as he was told), he qualified for nothing! ... this is so wrong because with the right advice someone like this can get CHC. My OH was similar and he was assessed and refused twice but we got it on appeal.
Please talk to Beacon if you find yourself in this situation. ... they are subsidised by the government to advise people on this and they are free. They only charge if they mount an appeal for you. I did my appeal on my own but ran it past them first and that was free.
I do not have shares in them! ... I just can't bear seeing people being short changed at such a stressful and emotional time in their lives. www.beaconchc.co.uk

@Coffeeisnotmycupoftea Please don't discount your own needs in all of this. I know it feels selfish, but the likelihood is you will end up caring for your father too, so don't neglect your health.

I understand you don't want your mother to go into care, I know that feeling. The thing is that it is often some disaster that precipitates a move to residential and that can make the move rushed and unsatisfactory. It is better to move them a week to soon than a week too late.

I was reluctant too and caring had a huge impact on me and still does if I'm honest.

An important but often not understood aspect of getting your loved one into a really good home is that you can relax, let go of all the anxiety and stress, and just be a daughter again. You may not have much time left together. For me, being able to just sit and hold my father's hand without any of the responsibility of caring was wonderful. I could just enjoy being with him. Now that he is gone, I really miss that and him.

I have sent you a PM. 💐

Op have you considered respite? It’s not ideal for mum as you may find the move may affect her like being in hospital does, but it would allow your dad to get a break from his caring role, and for you and your sister too?

or you could have private live in care? They could do what’s needed for mum and allow your dad time away to do things for himself again? Even private blocks of care can help the people that are carers, get a break. A few hours a week to take her out might help ease the pressure and often it can help them do things she enjoys. Or a day centre?

Sounds like you all need a carers assessment in your own right. This can be done through your local social services. Some allow you to complete it online and it will help adult social care see if there is anything they can do to support you all. Sometimes digital care can be explored and help the situation. Things like Herbert protocol should be considered if she’s a risk of getting out and becoming lost?

Two-stage process. First a clinician needs to complete the checklist to see if a full assessment is warranted. The bar is set very high. You can see the checklist here https://www.gov.uk/government/publications/nhs-continuing-healthcare-checklist

Then if they qualify, there will be a full assessment.

If a doctor says they are in rapid deterioration or end of life, you will automatically be funded, with immediate effect.

Yes, that’s exactly what I am saying. So when people say ‘you don’t have to pay’ they may be envisaging your mum in a care home predeceasing your dad so the estate is intact. So they are essentially correct.

In my experience, GPs go to is always that someone needs a care home! I’ve even had to sit there while my dad has been told categorically that if my mum made it through, she would be in a care home for the rest of her life. I had to calm down my incredibly distressed dad thanks to that absolutely incorrect comment!

That was 6 years ago and she’s been fine at home all this time. Health aren’t the people to decide about care homes, social care are.

Again, if she goes into full time residential care and her husband is living in the property, the property WOULD NOT be included in the calculations. the council are not able to claim a deferred payment against the death of the spouse.

this is probably why people are saying ‘she doesn’t have to pay’. She doesn’t. Might the family want to pay to secure a home of choice? Yes. Is it egregious that order of death can wipe out some estates and leave some intact? Yes. But the bottom line if there is an established need for residential care, she will not pay.

this is the quote from Age UK

*Moving into a care home permanently
If you move into a care home permanently, your home won't be counted in the financial assessment if any of the following people still live there:

• your partner, spouse or civil partner
• your estranged or divorced partner if they're also a lone parent
• a relative who is 60 or over
• a relative who is under 60 who has a disability
• a child of yours aged under 18.

Try to find a nursing home that provides specialist dementia care. As your mother has other medical needs, she will probably qualify for Funded Nursing Care. I can't remember how much it is, but it's around £250 per week and is paid to the Home, but deducted from the fees. My late father qualified for this as he had prostate cancer which required nursing supervision. Unfortunately he died before all the paperwork went through. Your mother may qualify with her heart condition.

The right home is so important. You need to get your mother on the waiting lists. My father spent a couple of months in a care home which proved detrimental before his name came up at the nursing home I moved him to. He had been on their list for six months.

Look for a home with a CQC outstanding rating. I also found lottie.org a useful Web resource. If you are in the East of England, I can DM you the name of the place my father was in. I highly recommend it, and whilst it wasn't cheap, the difference in care he received whilst there compared to the previous place was astonishing. It was worth every single penny.

I would suggest you check into this in more detail. You mum needs a 'care needs' assessment and a 'financial assessment' from your local authority.
But based on my experience....
As your mum is being cared for at home, property value would be excluded from any financial assessment (unless she has other properties). She would be required to cover full costs to the point her savings reach the £23,250 thresh-hold at which point your local authority would step in.
If she went into full time care then the property may be included in the assessment. It could be excluded if a spouse or partner still live in the property in which case they may put a DPA in place and look to recover monies against the property value if the property were sold or after your dad passes - They can't force you to sell.
The only time I'm aware that full fees are covered by the council would be if your mother is deemed end of life.
You should also look into carers allowance if you haven't already done so - not worth much but every little helps.
My father had advanced Alzheimers, and was cared for at home before having to go into hospital where he was deemed EOL. He was subsequently moved to a care home costs fully covered after deduction of pensions (probably because his hospital bed wasn't freed up fast enough). They subsequently took him off of EOL at which point a care needs assessment was and financial assessment were done (it took time for the FA to be completed). We ended up picking up full costs until he was again put on EOL and the council stepped.
Those claiming to get care home fees paid for despite owning lots of assets / cash, either the person being cared for is EOL, or the council hasn't got round to completing a Financial Assessment (most likely the later). If they have and have been untruthful in declaring assets then that potentially opens them up to fraud claims. The council can still come after the estate/family for recovery of funds even if assets have been sold, but this would be a civil matter not criminal.

Yes this. Probably when people are talking about one parent not paying for care it is this scenario they are referring to, not accessing CHC.

it is egregious that order of death determines if a house is taken into account for the calculation of costs but it is so. In theory it would be possible to put a charge on 50% of a property pending the death of both parents but it doesn’t work like that. So, couple A, mum needs care first, dies and then dad dies without needing care in a home, house intact. Couple b mum dies without needing care, dad survives and needs care, the house is taken. Yes, there are practicalities like how much the LA will pay, restriction of choice etc for couple A but essentially how much of an estate is left depends on order of death.

this is why couples split houses into tenants in common. It doesn’t avoid fees, it minimises them. It’s is not deprivation of assets when it is not your asset to begin with. You are not saying you won’t pay for your own care, you are saying you won’t pay for someone else’s. People get outraged about this as they think about couples in terms of husband and wife but imagine the scenario if the home owners are brother/sister, friends or parent and child and the assumption of responsibility for the other based on home ownership suddenly doesn’t seem as rational.

That would be different funding under the mental health act, not chc, depending on the section.
Op I would agree with pp, contact age uk or similar for expert advice, there is also a lot of info on their website. The chc domains you can find online and rhe scoring system - this is for the checklist.

There is a lot of incorrect information in this thread.

changing the house to tenants in common etc can be seen as a depravation of assets and can still be used to pay towards care fees if it has been deemed to be doing so.

If the money has run out, the LA don’t pay it all, the persons pension, any income, gets used first less around £30pw for toiletries etc but everything else gets used first, then the local authority pays the remainder up to their weekly rate.

I’ve heard of care homes stating they will keep someone there when the money runs out but if they’ve had a change of management etc they can change their mind and decide they can’t take the LA rate. The care act 2014 states a local authority has a duty to meet the persons care and support needs but it doesn’t state it has to be in the same home and the LA has a responsibility to use funds wisely so could move the person to somewhere locally that will accept the rate. There is a set rate each financial year. If they’ve original care home wont accept the LA rate, and have found another local home that will, the family can choose to pay a third party top up which is the difference between the LA rate and what the care home are asking. This cannot be used from the service users money though, only family or friends.

CHC - is difficult to get. How I explain it is that social care is residential and nursing. If someone’s care and support is more than can be met at those, for example if their needs would be best met in a hospital setting, they may get CHC. Most care and support can be met in res or nursing. Look up DST - decision support tool, for the domains that are used for the CHC funding. It takes into account breathing, loss of consciousness etc.
fast track CHC is usually when someone is end of life and needs health assistance asap.