Carer left high and dry

[Nutty Nan]

I just want to share something with you all, in case I am not the only one who sometimes fails to see the obvious (or in case I have misunderstood):
When my husband was diagnosed with AD, I never questioned that I would give up work to care for him if/when the need arose. However, several years later, as things deteriorated gradually, I took on board various bits of advice and opted for Homecare, initially just to make sure he was safe and managed some lunch. Based on our financial assessment, Homecare was funded, and Social Services mentioned that if my husband needed residential care, then the same criteria would apply.
Events overtook us, he suddenly became completely reliant on help, and within months Social Services agreed to increase the care package to 4 hours per day to meet his needs and ensure his safety. There was a point at which I doubted whether he would be able to stay at home much longer, as he was unable to negotiate the stairs and almost completely unable to communicate and co-operate. I was scared stiff of what lay ahead, and realised that I relied on the comparative normality and continuity of work to keep me going mentally and emotionally. Finances came into it too, as I am not near retirement age yet, but I kept thinking that if necessary, we might just have to manage somehow on my husband’s pension.
Imagine my shock when a learnt in a chance conversation this week that if my husband had to be cared for in a residential home, it would, indeed, be funded by Social Services, but his pension would go towards meeting the cost. I suppose this makes sense, but it simply had never occurred to me. Does this mean that if I had (or did) given up work to care for my husband, and he had, eventually, been admitted into a residential home, I would be left without any income at all?

 

[noelphobic]

Imagine my shock when a learnt in a chance conversation this week that if my husband had to be cared for in a residential home, it would, indeed, be funded by Social Services, but his pension would go towards meeting the cost. I suppose this makes sense, but it simply had never occurred to me. Does this mean that if I had (or did) given up work to care for my husband, and he had, eventually, been admitted into a residential home, I would be left without any income at all?

You are correct in that even if someone is Local Authority funded in a care or nursing home then most of their income does go towards the costs, the Local Authority only picking up the tab for the remainder. The person in care has to be left with £18.80 personal allowance,but other than that any personal income goes towards the fees.

I would imagine that if you had no income of your own whatsoever then you would have to claim Income Support, Housing Benefit etc.

It should also be noted that if someone is self funding in a home and have a partner then I believe it is best to halve any joint savings and put them in separate accounts. Then, when the capital is run down to pay for nursing home fees at least it is only half the capital that is run down.

 

[Nutty Nan]

Thanks for your help with details and terminology!
Just as I thought: no carer's redundancy package available then ......

It sounds harsh, since the 'partner-in-limbo' would still have to pay the mortgage and the billls. But perhaps I should be grateful that we don't currently have to pay towards the homecare.

What a beaurocratic jungle!

 

[May]

As you said Nan,

no carer's redundancy package available then ......

first the your life's dismantled by dementia...then the beaurocrats come along and make it even more difficult.... Just about sums it up doesn't it?

 

[Sandy]

Hi Nan,

On this factsheet:

http://www.alzheimers.org.uk/Caring_for_someone_with_dementia/Residential_and_nursing_care/info_payingfees.htm

There is a statement:

Half of any occupational pension will not be considered by the local authority as income, providing at least half is passed on to a husband or wife still living at home.

It might be worth ringing the Alzheimer's Soc Helpline to find out more.

Take care,

Sandy

 

[Nutty Nan]

Factsheets

Thanks for the link, Sandy.
I remember reading this before, but as with most factsheets, you only ever absorb the details that are relevant at the time.
As we are hoping to steer clear of the care home issue for some time yet, I will not investigate any further at this stage. Who knows what is ahead of us, these things are so complicated, both in practical and emotional terms, that I can only cope with facts and not too many 'what ifs'.
I just wanted to highlight the point in case it helps someone else.

Fingers crossed we may be spared the tough decision.
Best wishes to all.

 

[jc141265]

Nan,

Being in Australia, I can't really comment on the situation you have there, but I did want to say, I know how much the situation you are in sucks. Its bloody rude, shameful, a disgrace.

Dad worked his guts out his entire career, unlike you my mother didn't work. During his career he once worked it out and apparently he used to work until May for the government and then the other 7 months of the year was his (i.e. thats how much his income was taxed). Dad nonetheless through sheer workaholicism (he was able to get a year off paid at his retirement because he had amassed that much annual leave) managed to look after us 3 kids quite well, all of us went to University, he provided for my mother and her hobby drapery shop that ran at a loss, and him and Mum also bought a hobby farm. Anyway point of the story was that, he was doing all this working hard so that when he did retire he and mum could live comfortably.

Never did we expect this. Dad was forced to retire at age 55 instead of 60 or 65 because of his illness, his superannuation and properties meant that he was not eligible for a pension and now his 'savings' are what are paying for him and Mum. All fair enough one would think, because afterall we should all provide for ourselves, but its a bit hard to handle when you realise that had mum divorced him a specific time before the illness got really bad, gotten half of his earnings and superannuation, she would have been able to keep all that money and if his half ran out whilst he still was alive, the government would have provided for his care, free of charge.

Instead, Dad's care will entirely come out of his and mum's pocket, whilst other's get it free or at a lesser cost. Again, I have been brought up by a workaholic father and so am of the mind, fair enough, we have to look after ourselves...BUT it worries me, what is going to happen when Dad's money runs out? Mum will have to sell their house, their farm, their assets until finally she is poor enough to deserve government assistance. Many might think, that is unlikely to happen, but the cost of care is phenomenal and my mother does not work, has never had to, is 60yrs old now and her own mother had her 100th birthday last year, so there is a good chance that she will be around for at least another 40yrs!

Its bad enough that Dad was cheated from his relaxed retirement that he worked so hard for, but now this disease will probably also take away every piece of security my mother ever had, all his work was for nothing. Life is so unfair.