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?

My impression from sharing info about care fees with family south of the border is that some of the private homes here (in Fife) bung on an extra 200 pounds or so to use up the 'personal care' allocation.

Back in 2011, I paid for one week's respite for Mum in a private care home which was also used by Fife council. I was shocked to be handed a bill for £900 for what was supposedly a 'luxury room'. No. No, it wasn't. (No, I didn't have a choice as to the home.)

This wasn't even a nursing home.

Later on, when Mum was in a nursing home I found out that - at least in Fife - in order to qualify as a nursing home, you only need one nurse in charge of the whole place. Being mindful of what had happened before, I told the nurse/manager that I wanted Mum in a standard room.

I'll add that - again - I had no choice over the home. We had to take what was available.

When I went pick up the bill for the week, the man couldn't look at me. It was £800 for a 'deluxe' room. (Same firm as the previous home.)

I'm working on keeping myself mobile and my mind active, but who knows what's ahead of them. I have no children to advocate for me.

Dad lived to 86, but was compos mentis in spite of mini strokes. Mum's dementia became obvious in her 80s. She died at the age of 90. Ditto her father, so goodness what is in store for me.

I will ask again, do you know this happens?

My mother spent around £400k on her care over the last 8 years of her life. I didn't get an inheritance, and didn't expect one. It was her money, she wanted it used for her care, and having money made it far easier to access that care.

My DM's CH fees are around £1450/week. For that she gets:

• a clean, decent room with ensuite wet room
• all meals and snacks
• nurse to give her medicines, note changes, deal with GP
• someone to feed her, clean her, change her, when she could still manage it, lift her into and out of her wheelchair, deal with her temper tantrums
• all the different pieces of equipment she has needed as her condition deteriorated

IMO the fees are a bargain.

With my DM and DMIL, yes.

Yes, if does. A dnr only applies to a major heart attack/stroke, otherwise treatment prevails. Mil had numerous bouts of pneumonia. Every time she was sent by the nursing home to hospital for antibiotic treatment, and then dispatched to nursing home to live on - bedbound, with a multitude of illnesses, and with advanced dementia such that she was a complete - I’m sorry to say - cabbage. It was awful.

And fil - also with dementia - was given a hip replacement after a fall. He had absolutely no idea what was happening.

@godmum56 I am not sure what point you are trying to make.

With acute health problems there seems to be a greater willingness to stop all treatment, to let nature take its course.

With chronic conditions there always seems to be another course of ABs, pacemaker, heart medicines etc etc. The determination to keep the body alive even if the mind has gone.

With DM we have LPAs so have been able to decline treatment on her behalf albeit with a fight. No LPAs for DMIL so she was treated many times long after dementia had fully claimed her.

I am not gifting money to a care home, I’m going to enjoy my money and pass as much as I can to my DC. I don’t want ‘care’, Is rather due frankly than be so ill I don’t know who anyone is, who I am or where I am. I don’t understand how other people feel they have the right to tell me that I have to spend my money to keep myself alive when I don’t want to. Neither am I prepared to subsidise those who didn’t save any money to fund their own care so the council pays. If I spend it/give it away they can’t have it.

Those examples are awful. My personal and professional experience has been different but I do feel that Shipman and the furore over misuse of the Liverpool Care Pathway has put medical staff under pressure. Even before POA's were widely taken out I know that round here, conversations were had between relatives, medics and care facilities about what was kind and sensible and what was not. Personally I was involved in those conversations regarding my own Mother and my late husband, professionally I experienced similar.

again, all that I can say is that is not my personal and professional experience and what you are telling me is terrible. As I have also said preoviously, I think that the misuse of the Liverpool Care Pathway and the Harold Shipman scandal has put medicas under increasing pressure.

My mother had dementia, and in her last few years I didn't have to argue with anyone about hospital admissions. Everyone - paramedics, GP, care home staff - agreed she should not go, even when she had a suspected TIA. She would not have withstood any treatment and was too frail.

I don't have any objection to paying for my own care if I need to. It will mean that I (or my attorney) can choose the care I get, rather than taking what Social Services can offer. I would rather not linger on with dementia, I can say I'll jump off a building but by the time I need to, I won't be able to organise my thoughts.

this is more like what I have seen locally

You're right, it is a tricky question.

It appears to me (and I'm not a medical professional) that once a person has dementia the body usually starts to fail too, but every time an infection comes along which could result in a relatively quick and peaceful death, they are instead pumped full of antibiotics and kept alive. It seems like the obvious solution would be that people should be given the option, before dementia takes hold, to explain their wishes that they will not be repeatedly "saved" when they have the opportunity to slip away.

I don't think it's anything to do with being a burden particularly, I would want my parents to stay alive as long as they had a good quality of life, even if it did result in money being spent or hard work on my part. I just know that they would never want to live with dementia and lose everything which makes them themselves.

I definitely support a system whereby you can have an advance wishes document that if, say, two doctors sign off that you have lost capacity, you can be “put to sleep” as it were.

I think most people are terrified of Alzheimer’s/dementia. The thought of sitting in a nappy not knowing who anybody is or even your own name, and your dcs/gcs visits waning as you live on and on…. The only winner is the owner of the care home.

I could cry when I know these types of services are out there but I just can't convince my elderly parents to let them help. They have plenty of money but just refuse to acknowledge that they aren't really coping. There is only so much I can do and I am at breaking point with telling them that they need to allow a proper cleaning/ home help service in. I'm ashamed to say I lost my cool this week and left the house after clearing their messy fridge and kitchen yet again. They don't realise that the house smells bad and the cleaner they have is useless. They hord their money for care later while not meeting their current needs.

Unfortnately my experience is the opposite of yours. Pressure to keep treating.

I think you are right that it was the perceived misuse of the Liverpool Pathway which has frightened HCPs away from withholding any treatment.

We have resisted treatment in hospital for DM because we know that the reality will be hours spent on an uncomfortable trolley in a corridor waiting for a bed to come available. She will be confused, frightened, distressed, in pain. Her health is so precarious that she could easily end up dying in that situation.

Declining treatment will mean that she will ultimately die but in the calm comfort of her CH. She is on EOL care so there are medicines available to ease her passing.

So, let's say your Mum gets dementia and starts wandering around at night - like my Nan, who would set off down the High Street in her nightie at midnight. My Nan also smoked and would fall asleep with a lit cigarette in her lap. Also, turn on the gas but not ignite a flame. What then? Sure as eggs are eggs you'll have to put her in a home. And the staff will ensure that she gets all the medical help she needs, which will keep her alive until her body gives out.

I support something like this - assisted dying, basically - in theory, but in practice I'm just too worried about grasping, manipulative relatives. As OP said in her first post, so many people are so set on their inheritance, I can absolutely see how many people might be able to sway a vulnerable older person into signing into something they don't really, truly want to do, but they fear becoming a burden and costing an inheritance... and once it becomes an option, it's also an active choice not to do it, and that's harder for many people.

I don't think anyone wants to live into that level and severity of dementia. There seems to be a disconnect sometimes between how bad it is for a parent ("I'll care for them myself") and how bad it is for you ("I'll kill myself before it happens").

Yes, mil was a statuesque woman and when she developed dementia she was violent. The home carers refused to come after she attacked them. She was also incontinent and had lost the 24-hour clock, so would be awake through the night.

Furthermore no “naice” home would take her so she was in a very basic establishment, paying full whack when everyone else was paying nowt.

Do you honestly think though, that your kids will just watch you living in your own home, if you are endangering yourself by not eating/falling over/setting stuff on fire etc, etc? Of course they won't - they will place you in a home, and you won't even know what's happening.

PIL lived like paupers. So much so that when FIL died we had other family members and friends offering to help with funeral costs. MIL went into care and it came to light they had over £1m in assets. The interest on her savings and investments coupled with non means tested AA and pension covers her care fees. In fact, last year she was still slightly up over the 12 months!

yup, I even consider retiring abroad just with myself if husband goes before me, so I leave all we have here to dear Child

I don't want stranger handling me, touching me and giving me food I did not sign up for.

local to me there is an NHS run hospital unit to care for people whose dementia takes this path. Its not discussed or widely known about but its there. I think the people who work there are heroes.

I remember when the LCP was being discussed on here and how the majority of people who posted were violently opposed to its use. I would not argue that it wasn't ever misused because the evidence is that it was but used properly it was an excellent tool for EOL care planning. every decision had to be documented along with a reason and signed off and it was clear and honest enough that relatives could read it and understand it. Sadly the misuse sank it and lost something that could have helped deliver humane and sensible care.
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