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

[Coffeeisnotmycupoftea]

People telling me time and again that my mum could get care home fees paid for by the government and I am certain they are wrong.

Mum is in the advancing stages of Alzheimer's having suffered now for 8 years. Between my father, my sister and I we have been caring for her ourselves. We now have a team of carers coming in 3 times a day as we are trying are best to keep her at home, for as long as possible.

We really don't want to put mum into a home if we can help it even though it is becoming a struggle (more for dad as he feels he has no life). This is not because of the fear of losing money as it's costing over £1k per week for the home carers as it is. It's more that we can keep an eye on her care at home and have yet to find a home we like the look of (have been viewing quite a few of late) but the truth is that mum will more than likely need to go into a care home within the next 6 months to a year as her care needs progress.

My parents have assets. I have looked into everything for them and have had SS round to do assessments etc and each and every time we are told care would need to be paid for in full by my parents (with AA and pensions included) because they have well over the £23,250 threshold. My parents FA has also given this information to us. We are fine with this and fully aware if you have any assets you need to pay for your care.

However, so many people we know tell us that mum should and would qualify for 'free' care. They seem to believe that continuing healthcare is really easy to get and I keep hearing their stories that their mum or dad are getting getting care home fees paid for free despite them owning property or having lots of savings etc. My sister is now pushing for us to find out more because someone she works for is telling her we absolutely must not pay for care home fees as we can get it paid for (??).

I am fed up telling them that isn't the case for a large percentage of people and most will have to fund their own care fees whether that is at home care or in a care facility.

I am right, aren't I? That most people with substantial savings and/or a home of their own will need to fund their own care? (I understand a house can not be sold whilst a spouse is living there but if they die the house will need to be sold to pay for the fees?)

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.

Local councils can also choose to leave the value of your home out of the financial assessment, even if someone living there doesn’t fit into one of the categories above. They don’t have to – but they should consider any requests*.

Whereabouts in East of England are you? I am in Essex.

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.

But mum would have to pay from the sale of her house should my dad die before her. Every single person that I know in that scenario has had to pay care home fees from the sale of their house, if their spouse or partner dies before them.

Right now, if mum was in a care home and had less then the threshold set and dad still being alive the LA would cover the fees but if dad were to die before her mum's half of the house will be taken into account for her care fees.

So if mum went into care and died before dad then the house is not included even if dad were to die soon after mum.

This is the information we have always and are consistently given.

We are very fortunate there because mum's GP is wonderful, she has never suggested a care home. Her last GP was awful, would never come out to her and just told me time and again she should go into care.

The newer GP is lovely, she will home visit mum and when mum was very unwell at the start of the year and we thought she was on her way out the GP arranged for all of her anticipatory meds. She has also re-written mum's ReSPECT form to state mum is never to go into hospital unless she has broken something. Mum has had 2 hospital stays in the last 8 months and each one has been extremely detrimental to her dementia.

Our problem really has never been mum, it's my dad who doesn't cope and wants mum in a care home. We have tried our very hardest to keep her at home but we have to respect his wishes too. I have made myself very unwell caring for my mum over the last 8 years because I don't want her in a care home but I can only do so much, something is breaking and it's my sister and I right now.

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.

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.

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?

I have sent you a PM. 💐

@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.

Thank you.

I do think we need to seriously think about a care home now. I’d love for mum to be cared for at home, they have the money and space but dad does not want this sadly and as it’s his home too I can’t override that decision so our only option will be a care home.

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

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.

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 have previously started threads regarding my dad, he is a very difficult character to deal with and is fully aware of both my sister's health issues and my own but doesn't really show a lot of empathy at all for us, or anyone tbh. I have reduced the days I go to them, I was going almost every day but have limited that to 3 times a week and my sister does the same but it's still a major battle because he needs checking on all the time. Friday night he gave mum a bowl of prunes and now she has dreadful diarrhoea and the poor carers have to clean that up. He doesn't care, says the prunes didn't upset him so he doesn't think it's anything to do with that and it's the carers job anyhow ffs!

He is very very difficult to get through to and will listen to no one. Three quarters of our battle with mum's disease is dad and not actually mum, she is quite easy to deal with in many ways.

Thank you.

I do so hate the guilt which comes from such a big life changing decision to make and you are correct, far too many people have opinions on this subject. I was lambasted on a sm post for mentioning that we may need to put mum in a care home at some point. Several people asking why I would do that as they are all hell-holes and another stating that she basically gave up her life for 10 years to keep her grandmother at home and she would do it all again in a heartbeat. What a saint hey!

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.

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.

My DM with alzheimers did get funded but it was about 6 months from the end where she had difficulty swallowing, was falling and DDad couldn't get her off the floor, she couldn't do anything physical for herself. By the time she was in the home I don't think she was walking. This was a number of years back so it may have become harder to get now.

Yep its just a question of vocabulary. Where is the line between social care and medical care? It’s not like most people in residential care choose to be there it’s mainly cos of a medical condition luke dementia or parkinsons etc. Medically they can’t live alone.

But the main requirement in the case of dementia, is social care - which does not need actual nursing. My DM’s care home was a specialist dementia for 36 permanent residents - no nurse on duty.

OTOH my FiL (with dementia) spent 2-3 years in an ordinary residential care home, but was eventually moved to a nursing home, because of problems caused by a slow-growing prostate cancer.

Look in to NHS Continuing Health Care. Some can claim health care costs even if they have assets. I'm not sure about the full criteria but worth checking it out.

I haven’t had time to read the whole thread so it may already have been mentioned. Have you applied for carer’s allowance for your mother? I don’t think it’s means tested and could be used for other add on services while you decide what to do (even if it’s getting in cleaners to help keep on top of the house to take a way a little bit of pressure)

My dad had terminal cancer, was bed bound, paralysed down one side and doubly incontinent. They had to use a hoist to change his nappy. He was told he had less than six months to live. He did not pass the threshold for funding. This was in mid-December (2023). His condition deteriorated still further and there were several trips to hospital when he was screaming in agony due to bowel blockages. He had a live in carer as his wife (who was also still living at home) has Alzheimer's. They came and re-did the assessment in March 2024 and funding was granted. He died 3 weeks later.

I get carers allowance, mum gets attendance allowance.