Care home / nursing home fees

GrannySomerset, although I didn’t have P of A (two siblings did) I was the one who lived by far the closest to my mother’s care home and consequently visited much more often.

At one of the regular meetings about her welfare, it was agreed with me informally (once she was over 90 and with fairly well advanced dementia) that except in the case of e.g. another broken hip, there was to be no hospital, and no ‘striving to keep alive’. IMO it would have been verging on cruelty. (Siblings with P of A would have agreed 100% but I don’t recall that they were ever asked.)

Hospital is in any case a terrible place for anyone with dementia, when they can’t understand what is going on, or why. TBH it was difficult enough in A&E more than once with my mother, when she could not/would not keep still e.g. for treatment of a hand injured after a fall, and then (of course) proceeded to pull every dressing off within minutes.

At 41 I should be in a home. I’m not purely because of cost. I have my DNR signed but really must sort P o A. I might based on this thread say screw the system and nominate my two year old son. I think it’s grossly unfair. (The system as it is, not my two year old- but he has his moment)

GrannySomerset - it sounds as though we have both been through a very similar experience. I am sorry that you too had to take a difficult decision - but so right and you gave him a dignified end.

maddyone - I am so sorry that your mum is being stuffed full of antibiotics inappropriately and that she is enduring such grim side effects from these. Even without PofA you are still entitled to express an opinion as to the wisdom of the clinical decisions.

I haven’t got a POA for Health and the consequence is that mum keeps being treated with antibiotics, one lot after another. I’ve lost count of how many she’s had just since Christmas. All these antibiotics have given her thrush right through. It’s in her mouth and right through to her genitals. Her mouth hurts and make it difficult for her to speak. She’s being treated topically for the thrush but it’s fighting a losing battle. Since she’s completely immobile and gets little if any enjoyment from life, I just wonder how long this is going to go on. She’s not living, she’s existing.

Luckygirl gives such good advice. When I could no longer cope with caring for DH at home I agreed with the nursing home and the GP that he was not to be hospitalised, something which he could not have understood and which would have distressed him and me. As it was his last days were serene and peaceful, he was always immaculate and shaved, and on my last visit I found one of the nursing staff sitting with him “so that he wouldn’t be alone”. No hospital could have provided such care or a better end. If I hadn’t had PoA I could not have insisted on no hospital.

WoodLane7

DON'T, whatever you do, when you are looking for a home indicate to them that your relative is a self funder - they whack the fee up by as much as £400-£500 a week - I work in the Social Care sector and have seen it time after time

This is what our relative discovered. The rooms in the care home were exactly the same but the self funders paid around £1000 a month more, to ‘make up the shortfall’ for those who were funded by the LA. Given that you have to exhaust your savings and then sell your home before the LA will step in, I think it’s disgraceful that people are basically being shafted for £12000 a year in this way.

From all I’ve ever heard, it’s not uncommon for the relatives, not the medics, to insist that someone be kept going - regardless of quality of life, and when letting nature take its course might be kinder - because they ‘can’t bear to let mum go’.

When I was a regular on a dementia forum I heard of someone of over 90, with already at least moderate dementia, whose relatives chose for them to have a pacemaker, even though they’d been told that without it, the person would most likely drift away quite peacefully in their sleep.,

I wish I’d had the opportunity to decline any such thing for my poor mother, rather than witness her former, intensely private self descend into the indignities of double incontinence, never mind what else comes with advanced dementia.,

But although so frail-looking, she had the general constitution of a rhinoceros. After breaking a hip at 90 or 91, I was told that the anaesthetist at the op to fix it had said, ‘Boy, this is one tough old bird!’
So often a broken hip is the beginning of the end, but she went on to 97.

When the cap is introduced I'd lay an odds on bet that people who have been self funding for years, will not have the the many thousands of pounds already paid taken into consideration.
No doubt the cap date will be the start date for payments to counted towards the cap.
You are right it will not be taken in to consideration, they have already stated that. It will commence from whatever date is decided at the time.

Most of the care people receive is classed as social care and not a health need, it your loved ones have the health need required to qualify you will get CHC. I have obtained it twice for both my late husband and my late mother. You can download the tools on lines and do the scoring yourself to compare them with the assessment the Social worker or whoever does it have marked. You can then discuss your point of view if you have records to prove your case they will adjust their score. Always good idea to keep records of everything that happens at that stage. I cannot repeat enough do not commit to top up at any time. I can cost you more than expected over the years.

My mother did the P of A for money, but flatly refused to do the P of A for health. She also flatly refused to sign a DNR during her several stays in hospital when she was approached by a doctor. My daughter, who is a doctor herself, told me not to worry as if it was not deemed to be in mum’s best interest the doctors would not resuscitate. She went on to say resuscitation of a 93 year old is so traumatic and so unlikely to result in bringing mum back that it was highly unlikely that it would even be attempted. Nonetheless the doctors treat mum for every infection and continue to admit her to hospital for IV antibiotics regularly. I’m not convinced of the wisdom of this. Mum has a horrible life and is merely existing, she is not living.

trisher, at my mother’s Abbeyfield (specialist dementia) all 36 rooms were the same, whether you were self funded or not. All were en-suite.

As I’ve said before, I would imagine that around half the residents were LA funded.

Calendargirl

^I wish we did not all live so long^

Never a truer word. Very old people, existing, not living. Being kept alive on drugs.

So glad my mother died at 92 before ever getting to that stage.

Just so hope I do too.

Oh Calendargirl I so agree. My mother is now 94 and a half. If she had died at 92 she would have avoided all the indignities that have been heaped upon her in the last year to eighteen months. She never wanted to go into a care home. She never wanted to be unable to stand up on her own feet. She never wanted to have to use a hoist to get into and out of bed and her wheelchair. She never wanted to have to use a bedpan for all her toilet needs and have someone else to wipe her bottom. She never wanted to not be able to use a shower and have to have bed baths given to her by carers.
I so don’t want to live to that age.

Saggi - I am so sorry that you are in such pain and having to do care tasks that you very definitely should not be doing. Have you been refused help by the local SSD? - it is clear that you should be getting help and it might be worth going back to them. Mention your MP or your solicitor - it sometimes gets things moving. You are making yourself iller. Are you getting all the right benefits? - try CAB or Age Concern. In your situation there are benefits you are entitled to which might ease your life a little by meaning you could employ a cleaner for instance.

As to living too long and quality of life. I had power of attorney for both money and health and welfare for my OH - thank goodness I did. He suddenly acquired an infection and went downhill and they proposed to send him into hospital for IV antibiotics. I (in consultation with my family) made the decision to leave him in his nursing home bed and let nature take its course. If he had just been physically disabled and was able to take pleasure in the things he enjoyed then we would not have made that decision. As it was he was severely paranoid as well as his physical problems and lived every moment in terror of imagined dangers - he thought he was being cut up and put down the sewer, that the carers were trying to dissolve his skin with soap etc.

If I had gone along with the decision to send him into hospital his terror would have been magnified in strange surroundings with needles being stuck in him etc. Our decision reflected quality of life considerations; the medics were obliged to mind their backs I guess. But they were visibly relieved when I took that decision from them.

I cannot stress too strongly the importance of doing a power of attorney while you are compos mentis.

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When I was looking for care homes for my mum (she died before she was discharged from hospital thank goodness) one of the homes showed me a room the LA would fund and a room they wouldn't. The "private" room was on the ground floor and had French windows and a tiny decking area outside, the LEA ones didn't. I suppose if you were worried about money running out at least in this home you'd only have to move rooms.
I don't think cost is any guarantee of better service either. I've heard the best service is from Abbeyfield Homes, a charitable organisation.

pig pigs

Ellylanes1

When the cap is introduced I'd lay an odds on bet that people who have been self funding for years, will not have the the many thousands of pounds already paid taken into consideration.
No doubt the cap date will be the start date for payments to counted towards the cap.

I think it will remain as it is for those already in care. This usually happens with any Government benefit. Those already on stay on the "Legacy" benefit. I think the only time they would change things is if it was in what the government saw as its own interests or care went back to being actually provided by councils (that would be about the time pig fly, I would guess)

Re ‘being kept alive on drugs’ my Health and Welfare P of A states very clearly that if I should develop dementia, or any other condition where I’m unable both to care for myself and speak - with full mental capacity - for myself, then I do not want any life-saving or life-prolonging treatment. Palliative care only, thank you.

If I still have all my marbles I can of course reject any treatment I don’t want.

The home my mother was in (primarily private) said that if residents run out of money they are not moved and the home accepted the council contribution. Residents there have homes for life. Not all homes are like this though.

I wish we did not all live so long

Never a truer word. Very old people, existing, not living. Being kept alive on drugs.

So glad my mother died at 92 before ever getting to that stage.

Just so hope I do too.

Quite right Lucky girl, it's an absolute minefield. CHC is difficult to comprehend. People assume that the person who is more dependant and very ill will qualify for funding. This is not so. It seems to be how much of the staff time a person requires.

The care costs will be deemed to be small no doubt, so that the individual (and iniquitously, their family) will still finish up paying the bulk of the bill.

The new guidelines have added nothing to clearing up the anomalies as regards funding from the health authority for those who are deemed to have predominantly health needs. This Continuing Health Care Funding system fails to pay up for the many who either know nothing about it and therefore do not apply, or are wrongly refused. If all those who qualified for this received it then only a minority of people would fall under these new care rules. It is in the government's interest to keep people in ignorance. As some on here will know my OH was turned down twice, but I won our case on appeal - sadly posthumously. The government relies on people not having the knowledge that I did, nor the ability to deal with the appeal process nor the tenacity that I am lucky to have. If I had not worked in the field I would not have known his rights.

When the cap is introduced I'd lay an odds on bet that people who have been self funding for years, will not have the the many thousands of pounds already paid taken into consideration.
No doubt the cap date will be the start date for payments to counted towards the cap.

Pammiel, these are the guidelines at the moment
Will the cap really fix the social care system?, the government confirmed the accommodation-related costs of care - those associated with daily living, such as; food, energy bills and the physical building - would not count towards the cap.

The government has not confirmed how much people are likely to pay for the accommodation costs, but previous reference of the cap following the 2014 Care Act suggested people's contribution to these accommodation costs should be fixed at £12,000 a year. This is now likely to be higher.

The other point of consideration must be the reference to the local authority arranging the care to find ‘better value care’.

In the 2014 Care Act, which was later abandoned, the cap was due to be £72,000. However, this was not as it first seemed.

It did not mean that once an individual had spent £72,000 on care home fees that the local authority would completely fund their care thereafter. Rather, when the cap was reached depended upon the rate of care fees that a local authority was prepared to pay. For example, if a local council was willing to pay £500 a week for care then, for individuals falling within that local authority’s responsibility, the £72,000 cap would not be reached until 144 weeks of care had been paid for. This was true even if, in reality, an individual was paying £720 a week for their care.

Further, the cap would not even be reached in this instance (after 144 weeks) if the care fee included the accommodation costs. This is because the cap on care costs in the Care Act (as it now appears to be with the new cost cap) was just that; it placed a cap on care costs only and the cost of accommodation and living expenses were therefore still needed to be met by the individual receiving the care or, their family.

This is obviously in stark contrast to NHS continuing healthcare: What makes someone eligible, where the NHS is responsible for all costs including accommodation costs for individuals who received care primarily because of their health needs.

The vast majority of people have their home as their only real asset. The new system will continue to ensure local authorities offer deferred payment agreements, which is an accruing charge on the property, which will need to be settled on the sale of the property or death of the individual. Therefore, it remains that no one should be forced to sell a home during the care recipients lifetime.

It will remain to be seen as more details emerge from the UK government. However, as more information is coming to light, the cap contained within the paper may prove to be somewhat disappointing for the majority of those in care homes who pay more than the rate that the local authority is willing to pay and also for those who will still be required to fund the accommodation element of their care which is likely to run into hundreds of pounds a week.

For advice on the topics discussed in this post, visit our Nursing Care Fee Recovery team page.

Author bio

Lisa Morgan
Lisa Morgan
Partner, Head of Nursing Care
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Lisa Morgan is a Partner and Head of the Nursing Care department. She is regarded as an experienced and specialist solicitor leading in the niche area of continuing healthcare.

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Disclaimer: The information on the Hugh James website is for general information only and reflects the position at the date of publication. It does not constitute legal advice and should not be treated as such. If you would like to ensure the commentary reflects current legislation, case law or best practice, please contact the blog author.
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My Mum died on the 19th September 2019 in a nursing home, she entered her care home with dementia in July 2010. She spent her last years as an inanimate, non responsive, prone ‘person’.
My Mum died to us many years before her heart stopped beating, I agree Saggi