Just been listening to Andy Burnham on care ......

And here we are again - someone peddling the lie that cancer care gets NHS funding and dementia care does not. This is wrong! Continuing Health Care finding from the NHS is based on specific criteria and many people with dementia qualify and many people with cancer do not! Check your facts Private Eye!

I have recently been very involved with the care of a 91 year old who is now in residential nursing care. For over 2 years she received means tested care at home and contributed £1650 monthly for 7 x 2 hours care daily. She is now in a residential nursing home and has been means tested at just over £2000 monthly. Her house will eventually be sold and the council will be refunded amounts incurred after 12 weeks in care. She has been receiving free care since 18 July until recently. She has no direct family to leave an inheritance only friends who don’t seem bothered about visiting her. Are we sure that the taxpayer needs to protect beneficiaries in this way?

One aspect of it all is meeting the desire for people to leave something to their children, a desire I share.

But if you think about this logically it does not necessarily make sense. We earn, we save and we spend that money on the things we need or want: food, house repairs, council tax, car expenses ..... so why not on care? Why is leaving money to our descendants sacrosanct?
I think it is a question worth asking; but can't imagine any government brave enough to ask it!

Bigger concerns for me are the quality of care (proper training, CPD, supervision, decent facilities) and the need for any money that the state pays out to go to the staff and the running expenses rather than to line the pockets of corporations.

PamelaJ1

DaisyAnneReturns

ronib

But care home fees and care at home should be paid for by the recipient if the money is available. Two years in a care home is average and its means tested for the first 12 weeks. If families feel deprived of an inheritance, there’s the option to care at home?

Why? If we can run a free at the point of need NHS why shouldn't that include care? You would then pay for that insurance over the years out of tax.

ronib what do you mean?
Care at home by whom? Do you mean by family or by carers?
Using carers is also very expensive. I’ve just looked up how much it costs just to have someone sleep overnight. No care, just sleeping and responding eg. calling an ambulance. It’s approximately £100/night!
We have my mother living with us but there’s nothing the matter with her, only old age, so we can cope. We are retired now and the grandchildren are old enough to look after themselves but a few years ago we were both working and doing a bit of child care.
That meant that four of us were working and paying tax.
One of us, at least, would have had to give up work and that would have been expensive too.
There is no easy answer. It all costs a lot, not only financially.

Thanks PamelaJ1 - I was in the position of caring for elderly parents in their home, supporting a yiung mother with mh problems+ two teenagers at home, as well as working full time. Fortunately, my husband was fully involved with our responsibilities. The idea that people can simply give up work to care for their elderly parents is simply wrong.
If I’d given up work, I’d be in a mess now without a work based pension.
I’m relieved Andy Burnham is attempting to put social care on the same footing as the nhs. The nhs feels safer in this governments hands than it did with the conservatives in govt. Not to mention the Reform plan to privatise it.

Iam64

The idea that people can simply give up work to care for their elderly parents is simply wrong.

Yet it persists.

Back in the day - when women largely (I assume it was) stayed at home whilst men worked and brought home a wage, I think they - women - often did care for elderly parents; but after the emancipation of women and de-industrialisation, the whole scenario changed. Change is inevitable - good and bad and in-between.

If an elderly parent needs full-time care and attention and his or her adult children are still working, there is no way they can fulfil both functions at the same time. Of course, if you are very wealthy, one spouse could give up a career / job without it impacting their future financial security but, in such cases, I'd imagine a well-appointed care-home would be the more likely option.

I believe - in theory anyway - that it's possible for a certain amount of state-funded care to be available for anyone at the point of need. The main problem with that though is not the finer details of how - but getting the public at large to agree on it in principle.

I think we've always been a divided nation, but never more so since the early 80s and intensely so over the last decade - and the media, and social-media have participated in and encouraged these divisions. These divisions aren't always according to socio-economic grouping either; the so-called 'working-class' are not averse to denigrating others in that demographic if they consider their benefits unjustly given, whilst the 'middle-class' will often defend benefit recipients... (as an example of these divisions).

I suppose, in the end, it all boils down to what sort of society you want, ultimately. I would definitely like to see a fairer, more egalitarian one and I'd be happy to contribute to such - because I can. But I know this is not a popular concept - in any demographic.

I don't envy Burnham, he must have huge reserves of optimism... his detractors and opponents are lying in wait for him round every corner - as they would be for anyone probably who'd decided to take on this challenge. Some will be wary of the 'finer details' - understandably - but for sure others will oppose him and his plans simply because he's a Labour PM.

Yes, if you give up work to care for someone, you give up what could have been your pension.

These days, I think the majority of families with mortgages need two incomes in order to pay the mortgage or rent, so it’s not feasible for one of them to give up work, even if they did want to care for a relative on a full time basis.

I think you also have be a certain sort of person to be a carer and have the sort of parent who can accept that sort of care. I have done it 3 times now and each time it got harder.
I am now watching my friends care for their mother who has dementia and is in her 90's. She asks the same questions on a loop all day long which is exhausting for them. One of them is a more natural carer and it takes her longer before she wants to scream. She is also more helpful recognising where she needs to step in. The other is at screaming pitch almost immediately. Quite honestly, I think it would be better for both the sufferer and carer to be out of that situation. However, the thought of a care home kills all of them and in home care is so expensive. They are pensioners themselves so there isn't a lot of money available. I can see it is visibly aging them.

That’s not my experience of in home care Icanhandthemback. The local authority in the UK will do a financial assessment and a monthly contribution towards care at home is calculated based on income and outgoings for those with savings under £23k. So additional support with personal care is most definitely available.
When a vulnerable person has no one living with them, the same financial assessment is carried out should a residential care home be a preferred option.

ronib, technically, the lady can wash, dress and feed herself albeit with continual reminders that she needs to remember what she is doing. Although she is unsteady on her feet, her carers are attentive enough that she doesn't fall. Her medication is uncomplicated. When she has had cancers removed, the biggest problem is stopping her from pulling her wounds apart because she doesn't remember she has had top op but there is no help there. Failing hearing can't be treated because she rips the ear plugs out as she doesn't remember what they are. The LA give help for personal care not respite from a person who just asks questions on a loop so no help there. Quite frankly, it is like a slow torture and exhausting. I visit regularly to try to take the pressure off them but even though I am only there for a couple of hours, it is tiring.

icanhandthemback

I think you also have be a certain sort of person to be a carer and have the sort of parent who can accept that sort of care.

It very much depends on the level of care that's needed I think. If the parent basically just needs someone who is "there" but can manage somewhat on their own - that's one thing - but intense, personal care is a completely different circumstance and I believe it involves a certain professionalism and detachment to be able to do it adequately. It's not a mantle everyone can put on I agree.

However, the thought of a care home kills all of them and in home care is so expensive.

It's a sad reflection on a civilised society if the reason for the thought of a care home is because of the reputation some have; I think we've all heard of those... I can't think of anything more depressing than being of sound mind whilst physically 'limited', and being plonked in front of a TV for hours whilst the staff - probably underpaid, and overworked through under-staffing - cope with other residents and duties.

I think the kind of in-home care that you might have in mind is expensive. But there is a basic level where based on the number of visits per day required and your personal finances, you can have carers coming in to do the personal care, which certainly helps.

Before he died last year, my OH had 4 visits per day as his disease progressed and my ability to care for him became impossible as I was also ill and had just come out of hospital myself. They were Filipino, and they were lovely - very kind and gentle with my partner who though not suffering from dementia, exhibited similar symptoms sometimes due to the nature of his disease. However - once the final visit ended, I was left to cope with a man, supposedly bed-ridden but who, in reality, responded instinctively when he needed to pee by attempting to get up and walk to the bathroom; I had three duvets piled on the floor beside him in case this happened whilst I was in the kind of deep-sleep that sometimes afflicts those who don't get enough of it. The dear man was most alert during the night and if not attempting to get out of bed, would be fiddling around in his bedside table, switching the light on and off at intervals. By the time the carers arrived the next morning, I was, frequently, utterly exhausted and in truth still haven't quite recovered. So, yes - the kind of in-home care that actually really makes a difference is expensive because over-night care is not covered by any care-package.

Imagine being the adult child of a parent in a similar situation - with a job (one that was necessary to afford to pay the bills and mortgage/rent) and a household to run...

Dickens, I explained why personal care is not considered to be a necessity. The family have already said that once full personal care is needed, they will have to get help either in or out of a care home. The thought of a care home kills them because they know how confused their mother would be and how she is likely to deteriorate quite quickly. They know that my Mum is in a Nursing Home because she is at a totally different stage of her dementia journey.

Quite frankly, I have dealt with the most extreme end of personal care and that side of things doesn't bother me although I am glad I don't still have to do it. I cracked when physically we couldn't manage my mother anymore. My sister can't do the personal care without retching or do the physical care. We had no choice as my mother's home was not viable with her being unable to walk any more.

It was still a difficult decision though. I know we got to the stage where caring took up our lives and we could no longer see the wood from the trees. Even though there are good reasons for making that decision, we felt such guilt and a sense of failure where we so worn out. 3 years on, I can see it was absolutely the right decision although there are still times when Mum is begging to come home, I wish I could care for her.

icanhandthemback

*Dickens*, I explained why personal care is not considered to be a necessity. The family have already said that once full personal care is needed, they will have to get help either in or out of a care home. The thought of a care home kills them because they know how confused their mother would be and how she is likely to deteriorate quite quickly. They know that my Mum is in a Nursing Home because she is at a totally different stage of her dementia journey.

Quite frankly, I have dealt with the most extreme end of personal care and that side of things doesn't bother me although I am glad I don't still have to do it. I cracked when physically we couldn't manage my mother anymore. My sister can't do the personal care without retching or do the physical care. We had no choice as my mother's home was not viable with her being unable to walk any more.

It was still a difficult decision though. I know we got to the stage where caring took up our lives and we could no longer see the wood from the trees. Even though there are good reasons for making that decision, we felt such guilt and a sense of failure where we so worn out. 3 years on, I can see it was absolutely the right decision although there are still times when Mum is begging to come home, I wish I could care for her.

Do you think, under the circumstances which compelled you to take the decision to have her cared for in a home - she would, if she understood - want you to still feel guilty or that you'd 'failed' her?

I have to say, Dickens, my mother considered it her God given right that no matter what the circumstances were, it was her children's duty to look after her. She is a completely narcissistic character and it didn't matter that she chose not to do that with her own father. I looked after him! In fact, it would have stuck in her craw that I did it for him but couldn't do it for her. I think with her indoctrination that your mother came first, it made it harder to make that decision even though I knew that was most unreasonable of her to have that expectation. Consequently, I have told my children that I don't want them to take on my care. I want them to continue their lives but obviously it would be nice if they would visit me. I am also going to write a letter to them to be opened in the event of dementia or other incident which means I can't look after myself, to reiterate that sentiment. They can batter me with it if get unreasonable!

icanhandthemback

I have to say, Dickens, my mother considered it her God given right that no matter what the circumstances were, it was her children's duty to look after her. She is a completely narcissistic character and it didn't matter that she chose not to do that with her own father. I looked after him! In fact, it would have stuck in her craw that I did it for him but couldn't do it for her. I think with her indoctrination that your mother came first, it made it harder to make that decision even though I knew that was most unreasonable of her to have that expectation. Consequently, I have told my children that I don't want them to take on my care. I want them to continue their lives but obviously it would be nice if they would visit me. I am also going to write a letter to them to be opened in the event of dementia or other incident which means I can't look after myself, to reiterate that sentiment. They can batter me with it if get unreasonable!

I think with her indoctrination that your mother came first, it made it harder to make that decision even though I f her to have that expectation.

I get that icanhandthemback; the guilt is there regardless of what your rational brain is telling you. Especially when there are times she's begging to come home.

Like you, I don't want my son to take on the burden of my care - he lives abroad anyway so it's not even a consideration, and I'm glad of that.

Your mum's belief though was not unusual among her generation was it. Adult children - especially women - were expected to take on the care of their ageing parents. Which is possible, but not if that adult child is holding down a job, though I do believe some try to do both, and some companies will make allowances for the fact, but at what cost to the carer?

When my own mother died, it was sudden and unexpected - unexpected in the sense her disease was being managed well by both the medical profession and herself. I was living and working abroad at the time. My partner had been made redundant in a specialised industry here in the UK, and through his ingenuity had landed not only himself, but me as well, the chance-of-a-lifetime job - both of us, working for the same company abroad in our late 50s. Not something that happens every day. If my mother had not died suddenly and had needed looking after - I don't know what I would have done frankly, but I think the guilt might have been strong enough to impel me to return. Leaving him out there as he was 6 years from retirement age.

... that's why I don't want my son, who is now in a similar position, to become my carer. I've no family here in the UK, apart from a half-brother who is himself unwell. I've a circle of close friends and we all help each other as and when we can, and that's good enough for me. I hope to follow my mother's 'example' but if not, I'll bite the care-home bullet - and my friends, as instructed, will be quite ready to shoo my son back to whence he came should he allow guilt to trip him into returning.

Re-reading your earlier post it's clear you and your sister were under enormous pressure caring for your mother - it seems under circumstances which left no options other than to just get on with it. Not only that - but your grandfather as well!

We see a name here on GN and sometimes chit-chat away with each other, but occasionally get a glimpse of the real-life that's lived behind that person's name, a life that seldom 'betrays' itself but, when it does, it concentrates the mind somewhat to realise that many of us have carried - or are still carrying - a heavy load.

Dickens, I really hope you (and I) are able to give our children the freedom to do what is best for them and their children.
My sister has not been under that pressure apart from a couple of weekends when I have been away. The 'we' was my mother's partner and I. He was as old as my Mum and with his own needs, (autism, Ankylosing Spondylitis, COPD, deafness) it was nearly killing him. He also didn't understand dementia so really thought she was being deliberately awkward. To be fair, it was her nature! He had been in her life for 25 years though and although he had no legal rights, I felt that it was as much his decision as mine. My sister pushed for me to put Mum in a home for a long time; her relationship with Mum is well and truly fractured.
My grandfather was a totally different kettle of fish and although there was a lot of personal, intimate care involved, he was always grateful for us having him. We built up a relationship that had never been there before and it gave my young children quite a lot of interesting experiences that they wouldn't otherwise have had. My husband was absolutely wonderful and it strengthened my relationship with him too. I have no regret but I was much younger so it wasn't such a strain as my mother was. I think that is part of the problem. Our generation of parents have lived much longer so we're slightly decrepit by the time we find we might have that responsibility.

icanhandthemback

Our generation of parents have lived much longer so we're slightly decrepit by the time we find we might have that responsibility.

... yes, that's true!

When my son comes over to visit, I'm always a tad shocked by the amount of grey-hair he has. Not to mention that he makes that "ugh" sound when rising from an arm-chair - which is symptomatic of advancing age!

Our generation of parents have lived much longer so we're slightly decrepit by the time we find we might have that responsibility.

I was the child of older parents so I had children (babies and toddlers who grew up to their teens) when my parents needed care, as well as juggling a job. My brother and sister-in-law's children were older but they were trying to work full- time too.

It's never an easy time.

Not to mention that he makes that "ugh" sound when rising from an arm-chair - which is symptomatic of advancing age!

But does he say "Oooff!" when he sits down in the first place? 😮‍💨
(I've realised I do...)

The central issue is whom we are paying for care. At present all homes and home care agencies are private. If it is fully state funded for everyone we need to ask ourselves if we want that money to go to high quality care or to lining the pockets of rich investors in homes and care agencies. We cannot state fund care until the corporate leeches have been removed from the equation and care is state run. Every tax penny that goes into care should be spent on that care.

In an ideal world yes that would be good but unfortunately the evidence from nationalising businesses isn't great either. Humans being as they are will vary in their behaviour as employees as well as those in need of care. Just as we seem to need private medicine as NHS doesn't work efficiently, there will always be private care in whatever form it might take.

Luckygirl3

The central issue is whom we are paying for care. At present all homes and home care agencies are private. If it is fully state funded for everyone we need to ask ourselves if we want that money to go to high quality care or to lining the pockets of rich investors in homes and care agencies. We cannot state fund care until the corporate leeches have been removed from the equation and care is state run. Every tax penny that goes into care should be spent on that care.

That’s not the case Luckygirl3, some councils do still have and run their own care homes, and some do still provide an in house home care and/or reablement service, in Wales at least. The councils do charge though, I believe they always have?

I don’t personally think all care should be free, I think it’s reasonable to charge a board and lodging fee, those are unavoidable when you live in your own home, and it wouldn’t be right for people in care to make a profit at the state’s expense. Those costs could be met from the state pension being reduced, as it is now when people need residential care.

I think it's fair enough to stop someone's state pension when they are in residential care - otherwise they are taking out of the system twice. OTOH, if someone is leaving a house behind to take up that care, there are still some expenses attached.

We have just lost my dearly loved MIL who was in a care home for around 7 months. During that time we made sure her council tax was paid, and the heating came on for a couple of hours a day when the weather was cold, lights came on in the evening and so on. We had POA and could use her bank account to pay for it, and as she was self-funding her pension continued. Had that not been possible we would happily have covered it, but the point is that even when someone is in care there are expenses, and not everyone in care has family on hand. That opens other cans of worms, as had we not been there I have no idea who (if anyone) would have done that sort of thing. Anyway, that's way off topic, sorry. Stopping the state pension when someone is in state-funded care seems reasonable to me, though, and that would help towards paying for LA homes.

I agree with Luckygirl that taxpayers' money should not line the pockets of care home owners and investors. I looked up our council tax for another thread, and in my postcode over £2500 per household per year is spent on adult social care.

Many people who pay that money are also charged if they need such care themselves, often subsidising other residents who get their own care free. That is unfair in itself, IMO, but if we get LA-funded care (which I would very much prefer to see) it would be even more unfair for people to pay that sort of money, lose some of their pension and subsidise private homes as well as LA ones. So long as tax is compulsory (be it income tax, council tax or NI) it should be spent on things that everyone can access if and when they need it, and accounts should be a matter of public record.

I agree that there will always be private care - Thursday Murder Club/Waiting For God sort of places will always exist, and I have no objection to that. But they are not care homes so much as hotels for the elderly. If residents needed nursing care they would have to get it somewhere else.

Our local care home is excellent and also provides nursing care if required. It's always interesting to see how new residents perk up and improve in health as the food is very good (and carefully nutritionally balanced) and the activities and company seem to be much enjoyed. It's lovely to see. Still expensive though.

Yes, my MIL's home was very good too, although the experience of being frail enough to need to be in one is never going to be much fun.