With dementia on the increase, AIBU to think that many overestimate the amount of inheritance they may receive?

[EndlessSeaViews]

I can't help but wonder if people (who currently don't have an elderly or unwell parent) realise just how expensive care fees are in this country?

I see so many inheritance threads on here and people getting upset because they have discovered a sibling or other relative is set to benefit more from a potential will or that a parent or in-law has suggested they should add this person in or take that person out and see threads stating 'We are set to inherit this or dc will be rich at 25 with this big inheritance from their gp' etc?

I can't help but wonder with an ever growing ageing society and diseases like dementia being the biggest killer in this country that many people will have a shock when their parent or grandparent ends up in a care home and all of 'their' inheritance is swallowed up.

I'll be honest, up until a few years ago, I too had no idea just how expensive care costs are to the individual or to society in general.

My parents are in their 80's and mum is (now) in advanced Alzheimer's disease having suffered for the last 8 years and even though she also has cancer, heart disease and osteoporosis her poor body must have a strong will and desire to keep on living because despite succumbing to various infections and a couple of falls over the last year, one which saw her fracture her neck (a fracture that most elderly osteoporosis sufferers die from), she keeps on going.

Due to her frailty and double incontinence she requires carers 3 times a day which is currently costing mum £4k per month (almost £40k so far). Thankfully my parents can afford this. Post hospital discharge mum had 6 weeks of 'free' LA funded care and it was dreadful, so we are thankful there are funds for private care and I will forever be grateful for that. This current care though is really not enough so between my elderly father, my sister and I we fill in the rest of the time (carers only here for a maximum of 3 hours per day, usually less) and it is beyond stressful. Eventually and probably sooner rather than later we will have to conclude we just can not keep mum at home any longer and she will most probably have to go into a care home and with her growing complex needs it will more than likely cost £1600+ per week, so at least £70k per year. Dad is 85 this year and although he is in physical good health we are concerned that his cognition is declining too so who knows what the future lies ahead for him and how much care he may need?

DH's uncle had a stroke two years ago and has been in a care home, on end of life care, for the last 18 months, this has so far racked up a bill of £150k.

Personally, I have never relied on an potential future inheritance and I am thankful that my parents have enough funds to be able to pay for the best care their money can buy, I know many are not so lucky. But I could never rely on my parents money coming my way and so dh and I have long ago made our own provisions for the future but reading so many of the inheritance threads here with siblings squabbling over wills whilst their (often not yet too elderly) parents are still in fine fettle makes me wonder how many will be in for a big shock should either of their parents or relatives become one of the many who are diagnosed with dementia every year and need lots of care?

Deprivation of assets: How can it be legal to chase me for money I’ve spent maintaining a similar lifestyle to what I’m used? Can a council I insist I go into a CH (effectively seizing all I have) if my express wishes are not to go into one? Can the council effectively keep me alive against my will and expect me to fund it whilst others don’t?

If I have an LPA I assume they can do none of the above?

I wish people stop blaming/implying the ‘wealthy’ are responsible for the NHS and SC current and future crisis. How about we recognise the following:

: those who never save for needing care, just spending all they earn
: those who don’t take care of their health, eat unhealthily etc just don’t take any responsibility for themselves
: those that expect the state to pick up everything f, no matter how much it costs, to meet their/their child’s individual needs
: those families who never give any family member any support
: the massive waste in the NHS

I could go on.

but no, on Mumsnet it’s the people that have almost certainly paid shed loads of tax, worked all the hours, taken responsibility for themselves that we must focus on. How dare they not want to give everything they’ve worked for to a CH and subsidise everyone else again!

I think what you're missing, is that if you have dementia your children will most likely HAVE to put you in a home, whether you want that or not. My Mum didn't want to put her Mum in a home, however, there was no safe way to keep her at with us. My Nan would leave the house in the middle of the night. She would turn on the gas in the middle of the night. My Mum had two small children she had to keep safe. A home was the only solution, sadly. It kept her safe, and it kept us safe.

My own Dad is in a retirement village now. It's for elderly independent living. He is doubly incontinent, but does manage with the help of 4 care visits a day. He doesn't want to go into a care home. But if he develops dementia, there will be no other option. Me and my sister have talked about having him to live with us, but it would be an absolute nightmare. The sheer amount of equipment he has would be overwhelming. There are motorised wheelchairs, manual wheelchairs, zimmer frames, bed hoists, a hospital bed.....

I'd you lose capacity and have no adequate care then ss can insist you are placed in care. Once they are aware of your situation and assess you they aren't going to walk away and leave you to fend for yourself regardless of how much you protest.

It would all be done under the Mental Capacity Act if you have dementia or similar.

This is the situation we are heading to.

As mum's disease progresses the carers are requesting more and more equipment and it's getting too much.

Unbeknownst to me (I usually oversee everything) they have requested a transfer hoist and sling which was delivered last week. It's huge and mum isn't even at that point just yet. Dad went up the wall as it now sits in the spare room, it's an eye sore.

Sadly, once mum reaches this point we will have no choice but to look at care homes.

Because end of life care is so hidden, unless you've been there many people have zero idea what this entails if you are at home and needing care. It's not someone popping round to spoon fed you your soup and shuffle you off to the loo. If only it was that simple hey?

Agree 100% with your last paragraph. IMO there is too much ‘striving to keep alive’ of people with a very poor quality of life, e.g. because of dementia. From all I’ve ever read or heard it’s often the relatives, rather than the medics, who insist that someone be kept going regardless, when letting Nature take its course, with palliative care, might well be kinder.

So of course medics feel they have to oblige, to avoid Daily Mail type headlines on the lines of ‘CALLOUS DOCTORS WANTED MUM TO DIE!’

Once my Dm was over 90 with already advanced dementia, I told the care home there was to be no hospital unless absolutely necessary - e.g. in the case of a second broken hip. Hospital is in any case a terrible place for anyone with dementia, when they can’t understand what is going on, or why.

I think the "problem" is that with medical advances, we have found a way to make people live far longer than nature intended. That brings with it awful consequences sometimes, because people get so frail and we don't let them die. Is this progress? I'm not sure. My Dad would have probably have died at least 3 times, if nature had taken it's course. But every time, he's been nursed back from the brink. He is not doing well physically at all, and is probably in a mental decline too, as he talks about seeing people that are dead. He also doesn't have the best grip on reality, as the world has moved on, but he has stood still. He has forgotten how to do things like e-mail, and he now can't even work out how to use a big button phone for the elderly. He can, however, use a land line. We keep him going of course, but it's a lot of plates to keep spinning, and we've been doing this for 5 years now.

I read on here one time, on a similar thread, that someones Mum had been in a care home for years despite the fact she had advanced dementia, was doubly incontinent, slept almost all of the time and had zero quality of life. Her body just would not die. A dog would have been put to sleep in similar circumstances. But there's no answer is there? If we gave people the ability to "stop the care" for their parent, how many might give this instruction prematurely, in order to preserve inheritance. Maybe it would work if two doctors had to agree that it "was time" and sign off on it first.

Oh yeah, my Dad has the hoist/sling thingy. What an eyesore! He's in a one bed apartment. He lives in the lounge and the bedroom stores all the "stuff". Gah!

Just a thought, have you applied for Attendance allowance, housing benefit and a council tax reduction? My Dad is entitled to all of this now. I applied far too late, as I didn't know, but at least he's getting it now.

A number of things can happen really depending on the cost of the home. Councils generally have a ceiling amount they will pay which is what they use for the ppl they have had to fund from the off because the person lacks assets to pay.

so the council could say we will pay up to x and your relatives or friends will need to pay the rest, generally known as a third party top up. However, there is no legal requirement on family or friends to pay this. If the money can't be covered elsewhere, the home may accept the council amount, it really depends on the home.

Equally the home could say no we don't accept this lower fee, the person has to leave and they are within their rights to do this.

However there are other things that play into this. The council must meet the assessed needs of a person and can't just say we only pay x if x won't meet the needs of the person. This is why I would always say get an assessment done by the local authority before admittance to a home even if you're self funding so your needs are recorded. So in the scenario where the money runs out, someone would need to prove that the home they are in is meeting their assessed needs and that a cheaper home would not meet their assessed needs.

of course in reality most ppl wouldn't know this and someone in a hone with no relatives to act on their behalf in this scenario would be at the mercy of the system

it's definitely a scenario where ppl should get proper advice from somewhere like Age Uk or a solicitor who understands social care law which not all of them do

Every time mum has been admitted to hospital she has come out far worse than before she went in.

The last stay in January was a nightmare, I had to tell the different staff hour in and hour out that she has advanced dementia, can not communicate and can not understand what is said to her yet each time they would talk to her and ask questions as though she has full cognition . They would leave food and drinks on her table which resulted in severe dehydrated and I ended up having to stay with her all the time, on my own because my sister and dad both caught norovirus from A&E after we had sat there for 36 hours in a corridor (I was the only one who insisted on wearing a mask and I didn't touch anything that I didn't have to). Hospital is definitely no place for the vulnerable.

This is a snapshot of my mum's life now. Her day, every day consists of being taken out of bed, placed in her recliner, taken to the loo again at 2pm, back to her recliner and bed at 7pm. She will soil herself throughout the day and her only joy is food but we have to be very careful what she has as she is prone to terrible diarrhoea which is awful for the poor carers to deal with.

This is no life. We now have a ReSPECT form in place stating she is not to be given any life saving medical interventions or medication or admitted to hospital. She also has a DNR. I love her dearly but I don't want her to live like this anymore and that's nothing to do with saving money or wanting inheritance, it's because it destroys me every day to see my mother like this because I know this would not be a life she would have chosen for herself. My dad is the one who wants her kept alive because he can not bear the idea of a life without her. I understand this but this is no life at all regardless of what a pro-life campaigner may say.

We have, mum has full AA and council tax reduction.

My uncle, who has advanced dementia, is currently sedated in hospital because no care home can manage him.
He recently had pneumonia, which we thought might be a merciful end, but no, the hospital kept him alive.

I heard of someone of over 90, with already at least moderate dementia, who had some heart condition that wasn’t a very imminent threat. A pacemaker was one option, so the relatives asked what would happen if the person didn’t have it.

Answer, they would very probably die quite peacefully in their sleep.

The relatives opted for the pacemaker anyway. On the NHS, of course.

I’m sorry to hear this OP. If it’s any consolation she looks as comfortable as she possibly could be in the circumstances in a decent chair near a sunny window. x

Your DM is where my aunt was a while back and it probably won’t be that long now. I figured that as long as she wasn’t in pain and was enjoying her food, she was ok. She was a bit like a sleepy cat spending her days sleeping in the sun. She got sleepier and sleepier until she didn’t wake up during the day and died eventually in her sleep.

It’s too late for this now - but I always suggest that late stage dementia patients need a carer with them in hospital during waking hours (and during the night as well if they get up in the night). It’s expensive, but hospitals don’t deal at all well with dementia. That’s what we did with DF.

Regarding medical treatment - I’ve no doubt the RESPECT and DNR are the correct choices, but they’re difficult decisions to make.

I sat down with a friend of mine who is a geriatric consultant to discuss managing last phases of life. He warned me that doctors generally advise on the side of life-saving treatments and they can be quite oblivious to the effect or side effects of treatment on the elderly person. So it’s important for everyone to consider whether specific treatments are in the patient’s best interests, and to focus on comfort and palliative care.

We (me and my siblings) made decisions on a case by case basis. DF had a little bit of hospital treatment a couple of years ago, but anything major that happens from now on would not be treated and he has a DNR in place.

This is unfortunately what happens. Which is why I say, if people can afford it, it’s good to pay for a carer to manage late stage dementia patients in hospital.

It is the unfairness of the system. For hard working, working class people a couple of years in a care home wipe out all their life assets. For the wealthy and rich, they still get to pass on huge amounts as the total care fees only constitute a tiny % of their wealth. There is no cap. It will further expand the gap between the rich and poor. I will end up with no inheritance because all parents on both sides are in care homes. Care homes are privately funded for profit and they will
do anything to prevent natural death of the resident, extending their suffering, because it is in their financial interest to do so. I have no doubt that when my relatives’ money runs out they will then stop pumping them full of antibiotics and actually allow them to pass. A decade of disease - I have seen it all. It is barbaric how we have no respect for quality of life for those with dementia. And the UK will be split into the lucky ones who inherited and the ones who did not.

People with no assets who live in council houses and have no savings get care free.

People who have lived carefully, bought a small house and have just over £20K in savings get hit by all the costs.

I truly hope mum has the same peaceful ending as your aunt, they desperately least that don't they?

We are very fortunate now to have changed mum's GP to a fantastic one. The last one was useless, filled the ReSPECT form in all wrong, wouldn't do a house call and advised me over the phone to put mum in a care home. The new one has re-written the form and we have all the anticipatory meds in place and ene of life strategies in place for when the time comes and she is more than happy to come out to mum.

they don't claim the money back, they assess the persons assets as though they still had whatever they have deliberately deprived themselves of. https://www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-a-care-home/deprivation-of-assets/

"Knowing" you as I suppose I do a little through these pages and your posts, I'm sure you looked after them both to the very best of your ability. Please give such negative notions not a moment's thought. They were lucky to have you. 🌹

My dad died, leaving well over a million in savings. It has all gone in my mother's dementia care. Physically fit as a fiddle, but over 1.6k per week for residential care. Not sure what we'll do when it runs out. She's happy, in a lovely place and I'd hate to see her moved to a cheaper, less caring home as soon as the money fries up.

That's neglecting to include the returns on that sum though, so it would in practice last a little bit longer.

Thank you so much.

Yeah sorry, my calculations were on £2k per month not per week - brain fog. And so the minimum savings that poster asked about would be around £200-£250k based on average lifespan in a care home. Apologies.

That goes for me too.💐