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?

We live in SE, most of our local care homes are more than this and those that are cheaper are either dire (see my previous posts about the ones I’ve already visited) or have long waiting lists.

Just edited as I’ve noticed you’ve already replied, I’m going from bottom to top on the replies so was behind in reading the replies.

This was our experience with mum when she had care following discharge from hospital. We were told we had four weeks free care, which turned out not to be true. Mum was allocated twenty minutes four times a day distributed as an early morning call at 9am, one at lunchtime, one at 5pm and one at 9pm to put her to bed. In reality the 9am call never happened and I ended up washing and changing her myself as she was distressed. The next call was any time between lunchtime and 3pm, and the 5pm call ended up as her bedtime call because they didn’t have the staff to attend at 9pm. So most days it was two calls out of four.

You never saw the same carers twice and I was baffled when I noticed that they would spend about ten minutes of the allocated time attending to mum and would then sit in the car outside the house for the remaining time. I found out later that they were GPS tracked so it looked as though they were giving the full amount of time to the call when in reality they were sitting in the car drinking coffee.

The last straw was when the care company sent two men to shower and change mum. I’m sorry, I know carers can be male but mum was in her nineties, frail and confused, and needed considerable help to shower. She was visibly shaken when she thought a man was going to shower her. I refused to allow it, cancelled the carers and two weeks later received a bill for over £900. When I queried it I was told she didn’t satisfy the conditions for post discharge free care and when I refused to pay without further clarification, the LA threatened me with bailiffs. I paid up and went private.

I'm sorry that you and your mother experienced that @ThreadGuardDog.

@EndlessSeaViews we are in Northamptonshire. In DM's small town there seem to be a number of CHs.

When selecting it my criteria were:

• purpose built, I noticed that the poor CHs tended to be the converted vicarage type. DM was in a wheelchair at the point of entry so needed lifts, level floors, wide corridors and doors.
• 'through care' I was already aware that DM had dementia (dx took another year) so wanted somewhere DM could progress through rather than need to move her.

Her CH isnt perfect but having had a few extended stays in hospital it is a sod of a lot better than that.

I agree that many people are completely naive about the reality of frailty in very old age and the cost of care. And that worry and caring as a family member does not stop if they are in a care home.

I will add that the contrast to that was the lovely girl who—I discovered—used to sit and eat her lunch alongside my mother, to keep her company and to encourage Mum to eat more.

She cared for Mum while she was still in her own place and then transferred to us. When she told me that she was thinking of applying to university, I encouraged her in spite of the fact that it would mean that we we would lose her.

But yes - it was very hit or miss and some of the things that happened were very upsetting.

It’s such a difficult situation isn’t it ? And it’s fraught with guilt too - whatever you do you end up second guessing yourself as to whether it’s right, or enough.

I have health problems myself and to be honest if I hadn’t discovered the lady who became mum’s carer, sadly she would have ended up in a care home. I consider myself very fortunate to have been able to do it, and I appreciate that it’s not something that’s right for everyone. Eight years is a long time in a caring role, especially when you’re not in good health yourself. I do hope you manage to find a solution.

I'll be honest - I sometimes find myself wondering whether Mum would have been better in a care home, but she made it clear that she didn't want that.

Sounds as though you had a similar experience. The care system is broken but I don’t know what the fix is. I only know that fleecing the elderly and the vulnerable with such expensive and sub standard services has to stop.

CHC is NOT covered by the LA. It is an NHS provision and very hard to get agreement for, even for people with dementia

I had the same misgivings myself. Mum was adamant she wanted to be at home and I moved heaven and earth to make that happen. She died a couple of weeks ago, in her own bed, in her sleep and with her family around her. Even despite that, I still beat myself up daily wondering if I could have done better if I’d done things differently.

The guilt is the worst part isn’t it? I think I’d feel guilt regardless if mum is in a care home or as she currently is, round the corner at home with dad. I think about them all the time.

Local authorities are not responsible for funding continuing health care. It’s provided by the NHS and horribly difficult to secure. Having dementia as a stand alone condition usually won’t qualify for CHC - there has to be complex disability, usually down to multiple conditions, and needing targeted medical care rather than simply personal care needs.

I'm getting muddled with time. It's nearly 11 years since Mum died; I keep remembering things that I could have done better (particularly given that I was also looking after DH).

I do hope you take comfort from the fact that your mum was in her own bed, @ThreadGuardDog .

I try to tell myself that that made a difference to my mum too.

Attendance allowance doesn’t begin to cover the care needs of someone with complex disability. The fact is that CHC is made available to those with complex needs but the thresholds are so high very few people qualify - and stand alone dementia rarely cuts it.

I’m sure it did in both our cases. You do the best you can with what you have at the time - both in terms of time/resources and the enormous amount of energy it takes. Hindsight is 20/20.💐

I wonder what a sensible amount to have saved to fund old age care is. Say by 60. How much should you have saved (obviously it depends on pension income etc too), but if we were just talking savings, how much? £250,000, £500,000 a million?

The people who go there stay there until they are no longer violent. I am not sure about the admin details of admission because once people got to that stage I would no longer be involved with them (occupational therapy rehab) I do know that it was NHS funded via continuing NHS care and it was not expected that they would return home

Quite a few of the homes we have visited have stated they will require proof of at least 2 years worth of savings to cover their fees. As someone up thread said, the majority of people in care homes often don’t live beyond 2 years but obviously there are many exceptions to that rule.

So, for our area the average fee appears to be around £1600 pw so I’d say £150-£200k, at least.

It definitely could have been. If someone is sectioned under a section 3 then they're entitled to free aftercare under section 117

older ppl are rarely sectioned under a 3 and I don't think in 1983 when the relevant mental health act was created, that home ownership was that widespread

hmmm it sounds like things are not as bad here as they might be

If you have a decent amount of assets then a care annuity package can prevent all of the money being spent.

A quick google puts the average life expectancy in a care home at between 12 and 24 months, so assuming £2k a week as the bare minimum now that would be around £25k per year. You’d have to factor in future price rises of course, and then the cost becomes a matter of how long you live I suppose.

I think there are a lot of variables, but someone upthread posted that once you are elderly and have comorbidities like dementia, kidney failure etc, that active treatment would be discouraged. That wasn’t my experience with mum. At nearly 95 she had advanced vascular dementia, breast cancer, osteoporosis and atrial fibrillation. She was at severe risk for stroke and heart attack and she had a DNR because in those events her quality of life would be nil.

Despite all of that I was expected to administer her daily meds to treat her heart condition, the cancer and anti convulsants for the dementia. When a heart murmur was diagnosed a few weeks ago, the GP sought advice on treating it and only then was told ‘don’t’ because mum was so frail.

On the morning she died I rang 999 and despite it being obvious that mum had passed and advising that she was DNR I was asked to perform CPR. When I tried to object I was more or less bullied into it until the ambulance arrived and she was pronounced dead. I broke a rib during CPR and I don’t think I’ll ever forget the experience. I was advised afterwards that the DNR should have been on the ambulance services records and that CPR should never have been advised in those circumstances. I dread to think what would have happened if I’d managed to revive her. Common sense doesn’t seem to be a priority - the aim seems to be life at any cost.

£2k per week is £104,000 per year.