Alzheimer's Collateral Damage

[Harriet66]

Hi Michael,

Last year when both my mum and husband were diagnosed with dementia within weeks of each other, someone asked me how I felt. My reply was that I wanted to 'run away screaming'. I knew roughly what was ahead as my mum in law had suffered with Alzheimers for 5 years before her death. You sum my feelings up quite brilliantly - the knowledge that you are caught wriggling on a barb unable to escape, yet bitterly resentful of society's expectations of you. I'm on the 'gentle slope' at the moment, still able to escape to work and to walk the dog but I'm so scared of being trapped - all I can hear for the future is the sound of doors slamming. I just want to howl - 'I'm only 49 - don't take my life away too'. Maybe that sounds pathetic - life isn't fair after all - but I need to say it once in a while.
Please let us know when/if your piece is published - it should be sent to every politician,GP,consultant, social worker. Well done.
Harriet
Thank you for starting this thread

 

[susanne1964]

a very good read it certainly opens eyes and I wish you all the very best for the future
Sue
x

 

[Kathphlox]

Thank you Michael for your post, it's marvelous and the truth unveiled.

My opinion: The only way to have a life when a loved one suffers from dementia is to win the lottery.. I check my tickets every week, but not hit it yet

Hey watch out for the greedy parasitic oiks who lurk here and could steal your words, get it to the papers NOW! You've been ripped off enough!

 

[Chemmy]

My mum started off with assets totalling around £200K after the sale of her small bungalow plus a small widow's pension through Dad. She has been in care for exactly seven years and we have had no problem in self-funding during that period in a good CH, costing around £26K pa.

We have invested the capital carefully and there is still plenty left in the pot so I'm sorry, but I do take issue with some of what the OP says. He is, of course, entitled to his views but I am concerned that the figure he quotes for CH costs - £40K to £80 pa - is wildly misleading.

Apologies in advance if this causes offence...

 

[susanne1964]

dads care if he is going to stay in the particular care home that he is in now (I truly hope he does not) will cost approx £3k per month that is £36k. He can only pay a couple of years. Luckily (not for us) my mum died a long time ago so it is just his money.

I can see where Michael is coming from though and I thought it a really good piece of writing.

No offence intended to anyone

sue
x

 

[Kathphlox]

I guess I'm an illegal person.. 4 years ago when dad was still lucid, we went to the solicitors and got him to make a will (I'm an only child, but I wanted it in writing as wills are important) and also to the bank where he agreed to have online accounts.. so.. I've been running them since then.

A year after we arranged this, his grandson needed help, he agreed to give him that help, so there went another chunk of money, I did that for him online.

I didn't know anything about LPA at that time so I just carried on with what I thought was best.. I spent a lot of his money.. (before mum died she always said that she couldn't seperate him from his money, but I managed it) I spent it on everything I could to make his life easier.. new paving in the garden so he wouldn't trip.. the whole house was redecorated at his request and every single appliance gave up the ghost and had to be replaced.

Then he needed to have a whole bathroom remake to make it easier for him, then new flooring for the hygiene when he went to downstairs living .. it never stops, the money flows out like a river.

Never in 4 years have I taken any money out of his account that was not accountable, either at his request or for work needed..

You know...sometimes I feel neglected, dad never gave me any money apart from when I was struggling when we needed help, then mum had to prompt him..

Today, I could raid his account and 'go on a cruise' but then who would look after him and clean the **** from under his nails every morning.

*sigh*

Like I said before.. I need to win the lottery.. or just keep on keeping on I suppose.

And I don't intend to tell anyone about the bank account situation or apply for CoP until I have a good enough amount salted away to cover freezing bank accounts etc. BTW...salting away means the attendance allowance I try to save

Sorry about my rambling, Micheal's post just brought it all out for me.. how I feel and everything.

 

[Smiler]

Haven't posted much at all but a regular reader over many years of trying to do my best for Mum, and having gone through the same things as all of you. I was particularly taken by Michael's post. Just the same as Jan.S I was nodding my head as I read it.
I was stuck with no life at all because Social Services will do absolutely anything to keep your relative at home with you, regardless of what is good for your own health. Fortunately for me, on one occasion when I took Mum to the lady Doctor for a check-up she actually asked me how I was coping and repeated the question as I talked about Mum's problems 'yes but what about you?'. I had to answer honestly that I felt many times I was losing my temper, and didn't feel I could cope. The moment I said that everything seemed to change. Suddenly they must have thought I was in danger of doing something, in temper, and the difference in response from SS from that moment was amazing and extremely helpful. Just about a year ago I had to let Mum go to a CH, and it has been up and down in emotions (guilt being the biggest as you all know), but at least I have a life. The annual COP reports seem to run into each other, it takes me that long to complete them, accounting for every penny, (thank God for computers!). I hope that you, Michael, have indeed benefited by getting a lot off your chest and I wish you all the very best.

 

[mightymyrtle]

are there any actual guidlines on how to provide OPG with the financial accounts they require? Even VAT and tax returns have proper guidlines and forms to fill in to make sure you are giving them all the correct info? I keep records and have used my computer to give summarys and "narative accounts", it all makes sence to me but I have no idea if this is going to be enough or not?
Anyone that has had to do this in the UK before id really appreciate some tips!!

 

[uselessdaughter]

Can quite believe it

but I am concerned that the figure he quotes for CH costs - £40K to £80 pa - is wildly misleading.

Apologies in advance if this causes offence...

No offense taken but the care home we have Dad's name down for is currently £850 per week (£44,200 pa) and would go up to £950 per week (£49,400) if he eventually needs nursing care. I think a lot depends on which area you live in.

Linda

 

[Chemmy]

No offense taken but the care home we have Dad's name down for is currently £850 per week (£44,200 pa) and would go up to £950 per week (£49,400) if he eventually needs nursing care. I think a lot depends on which area you live in.

Linda

My concern was that anyone new coming on to TP yesterday, perhaps in a distressed state, may have been given the impression that the average CH fee was around £60K, (given the £40 - 80K range specified). I felt that needed clarification.

I accept there is a wide range, but if you are going to state a high end figure of £80K , then you need to balance that with a proper lower end one of, say £25K.

My guess is that the average figure is probably around £35 -40K, but I'm happy to admit that's no more than a guess.

 

[tre]

We are in Herts and in 2010 the CH my mum was in charged £725 per week for dementia sufferers. This works out at £37,700 per annum so I would say Chemmy is around the right level. The BUPA one was dearer ( £1,00 per week) but not so highly rated although the building and decor were posher. Mum did not need nursing care but presumably if you needed this you should be able in theory to get the extra allowance from the government.
Although £725 per week sounds a lot it only works out at just over a £100 per day. This was for her own room with ensuite, all meals, laundry,and 24 hour care. When you look at it this way it does not sound unreasonable.
What I thought was a bit off was the difference between what is charged to self funders compared to those with LA funding. I am a socialist so do agree we should look after the less well off but it seems like people in my mum's position have not only paid their taxes which go towards the funding for the less well off but then pay twice over in that the extra they are charged subsidises the LA funded. I think it would be fairer that all taxpayers subsidised the needy to the same degree not only the self funders with dementia paying premium rates.
Tre

 

[2jays]

but I do take issue with some of what the OP says. He is, of course, entitled to his views but I am concerned that the figure he quotes for CH costs - £40K to £80 pa - is wildly misleading.

Apologies in advance if this causes offence...

The OP does not live in this country....

 

[Chemmy]

The OP does not live in this country....

Thanks for pointing that out. I did wonder after reading some of the subsequent posts.

 

[Chemmy]

Although £725 per week sounds a lot it only works out at just over a £100 per day. This was for her own room with ensuite, all meals, laundry,and 24 hour care. When you look at it this way it does not sound unreasonable.

...which works out at £4.17 per hour. Food for thought.

 

[Kathphlox]

I wonder how much an hour my £70/wk AA works out

 

[Chemmy]

I wonder how much an hour my £70/wk AA works out per hour

Peanuts...sorry

 

[Delphie]

I wonder how much an hour my £70/wk AA works out

I know what you mean. I briefly considered looking after my mum (not really possible given how paranoid she often gets about me) and looked at the financial side of getting the Carer's Allowance and Attendance Allowance. Once my petrol was paid for out of that lot, I would've been left with having £30 per week to recompense me for giving up 35 hours of my time, which added up with my travelling time to and from would've made any paid for work impossible (and there are restrictions as to how much you can earn outside of caring anyway, I think).

I know that one argument is that we shouldn't be paid for looking after loved ones but on the other hand becoming a carer doesn't mean that I no longer need to eat, pay bills, buy clothes etc. I don't know how many independent adults could survive on £120 per month but I know that I certainly couldn't, not unless I lived in a tent and ate the cheapest food possible.

So, instead, thousands are going to be spent from my mum's savings/property to have strangers look after her. If she didn't have the money, a similar amount would come out of the local authority coffers. Just my opinion of course, but the system isn't entirely as good as it could be. It seems to me that the Carer's Allowance recognises that people need to be financially compensated for caring - why compensate them at a level that puts into poverty those without other ways to finance their lives?

 

[Kathphlox]

My thought is..if you care for a loved one (better than they can in Nursing Home) how come I can't charge approx £700/wk for that.. think about it...1 on 1 care, I think I deserve that, don't you? But I get £70/wk for that, how is that right.. it's not.

 

[Delphie]

I recognise that a care home has running costs I, as an individual, don't have so I wouldn't argue for a £700 per week salary for caring (although I lose something close to that when I stop working, as I did for most of last year).

I would argue, however, that anything below the minimum wage is unacceptable, especially as the savings carers are providing to the state (when people aren't self-funding) are huge. Beyond that there ought to be a human element to it that recognises and supports people giving up well paid employment to care for their loved ones, even if they could 'self-fund' strangers.

 

[lin1]

Carer's Allowance recognises that people need to be financially compensated for caring - why compensate them at a level that puts into poverty those without other ways to finance their lives?

I agree
Not that I wanted to be paid for looking after mum but if it had not been for dad supporting me the £53 carers allowance wouldnt have anywhere near enough to pay bills , food etc

As for care/nursing home fees , their is a large one near me who's fees for self funders is £1500 per week I was gobsmacked when I found this out
it had gone up £200 per week from last yr