Any advice on paying for care homes

Discussion in 'Younger people with dementia and their carers' started by Megan, Jun 18, 2007.

  1. Megan

    Megan Registered User

    Sep 10, 2005
    Hi, I've posted on here a few times now, my husband Colin is 58, he has fronto temporal dementia, diagnosed four years ago. He has been in an assessment unit for 7 weeks now. At the moment the Social Worker can't find a suitable home for him, but that's not my concern right now. Last week I had a visit from the Council Financial Services Team. A very nice young lady came, unfortunately she didn't even know what condition Colin had, she went through our finances, taking account of Colin's pension, our mortgage, utilities and Colin's DLA. Then she came up with a figure of almost £800 a month as our contribution. This was so ludicrous I just laughed and said that it was impossible, I only work part-time and our joint income, as with most people just about covers our outgoings with a small amount to spare. Her comment was that it was a very unusual situation to have someone so young needing care, with a young family and a mortgage! She contacted her office and asked to be allowed to let me keep half of Colin's pensions. This was agreed and the new figure was almost £400 a month. This is still not feasible, they don't seem to take into account that I have a four bed house to run, all the bills, a car loan, mortgage, young daughter to bring up and that I don't have £400 to pay for a care home every month, I only work part-time myself. I have had the official letter from them now and I am about to reply and tell them exactly where I stand. Has anyone else had a similar experience and where do I go from here? I've contacted the Social Worker to tell her the situation but she's away until 25 June, so no help there at the moment. It's all a bit of a nightmare, one problem after another, but I'm sure someone else has had the same thing so just asking for advice.
  2. jackie1

    jackie1 Registered User

    Jun 6, 2007
    #2 jackie1, Jun 18, 2007
    Last edited: Jun 18, 2007
    Hi Megan,
    I wish I had some advise to give. If you manage to find out and sort this unbelievable demand out I would be grateful to know.

    Although John is OK at the moment I accept he will probably eventually need more help than I can give. And the financial implications terrify me. Did they take into account your income/savings as well? We just could not survive if I had to find £400pm. And where would that leave the boys future. I have put money away since they were babies to pay to university etc. Surely they must take into account dependant children and the cost implications of that.

    All I can say is fight it all the way, it can not be right to leave you with nothing.

    There is these Fact Sheets:

    Take care
  3. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Oh Megan what a dreadful position to be in, aside from the heartache you are clearly going through, it seems inhuman to put added pressure on you of asking you to find such a huge sum of money.

    I am so sorry, I have no advice to give you on this, with luck another TP member will be able to help.

    The only thing I can think of is to refuse to let your husband be discharged from hospital until it is sorted out, maybe thats the wrong thing, I honestly dont know, but once you accept any kind of financial responsibility, you may be stuck with it, so I would say get all the advice you can before agreeing to anything. Maybe CAB could help you.

    Best wishes
  4. scarlett

    scarlett Registered User

    May 31, 2007
    care costs

    hi megan,
    My mum was diagnosed age 56 and still had mortgage and i am matron in a nursing home. As i understand it if the primary reason for placement is dementia i thought fees should be met by NHS or Social Services.
    My mum was sectioned and then diagnosed and went into a care home (albeit 35 miles away as little provision for under 65s.. as we all know!) straight from hospital . Is fully funded by NHS and financial assessment never done.
    also where i work a married couple are residents.. his needs are physical but hers are due to early dementia. her fees are paid by social services but he has to pay privately as they own property.
    you may have to kick up a fuss but hope this helps. am off wed/thurs but will try to get more info/ contacts for you if able
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Megan, has your husband been considered for NHS Continuing Care? Because Scarlett makes a good point, although in her case her mother was sectioned, which triggers different things. However, while many of the rest of us are told that the dementia is a "side-effect" of getting old (and in a way one can see their point) in your case it's clear that the dementia is caused by a physical illness. Not to get into the "social care" versus "nursing care" aspect of all this, but in no way shape or form could dementia at your husbands young age be considered to be anything but out of the norm. It's one thing for me to be told that my mother's inability to care for herself is because of her age rather than her ailments (she's 90) but another thing entirely for that assumption to be made about your husband, and in effect that's the asumption that has been made.

    This whole thing really makes my blood boil.
  6. Westie

    Westie Registered User

    This is just an awful situation for you. Do SS realy expect you and your children to no longer be able to support yourselves? Do they expect you to claim further benefits somehow? Do they understand what happens when you can't make the mortgage payments?

    This makes me so furious on your behalf - you must be absolutely seething.

    Jennifer has a very valid point about Colin's age. They must look at his case as an exception rather than the norm and that should mean different arrangements must be made.

    However awful this is, I think you must somehow remain very calm and determined with all your dealings with 'the powers that be' and don't be railroaded into signing anything you aren't happy with. Don't let the hospital discharge Colin until a satisfactory arrangement is in place.

    I know this is all much, much easier said than done but hoping you find the strength to sort it out.

  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Megan, I can`t begin to appreciate what you`re going through and wish there was some advice I could offer.

    What would happen if you absolutely refuse to consider any payment until your income and expenditure have been thoroughly assessed. Would your husband be sent home to you or put on the streets?

    Have you tried contacting the AS Helpline? The number to dial is 0845 300 0336 . Or try the CAB. Someone should be able to explain just how you can be expected to pay enormous fees, when you simply don`t have the income.

    I hope you are able to get some answers from somewhere.

    Take care
  8. Megan

    Megan Registered User

    Sep 10, 2005
    Very helpful suggestions

    Thanks to all who replied to my thread. I have had some very useful tips from you all and I am going to start trying to put some of them inot practice. My first job is to write back to the Council Finance dept and tell them under no circumstances am I going to be able to pay fees for Colin's care. Then I'll go from there, I'll see what their reply is. I will approach the Advocacy Service and also our local Carer's Association and see what they can offer. Let you all know soon.
  9. chip

    chip Registered User

    Jul 19, 2005
    Hi Megan, You sound in the same boat as me. My husband has now reached the age of 54. I think its awful that we get hit because of illness. Its like it was our fault for it happening. I've just got a bill in for two nights respite for my husband and its £75. I can't afford to get ILF ether as they want me to pay over £300 and as for the Social Work system i don't trust them. I never have seen or got a copy of how its all worked out. Have you? I even sent a letter to them to get this and still never have (7 months ago ) They also seem only to care about the cost and who is going to pay for it. We pay council Tax and government tax.
    I have also found out that carers who come into your house are limited on what they are allowed to do. If the person cared for has a - medicial - condition as well they cant do anything they aren't allowed to. My husband takes bad seizures so i am snooked. I also can't afford to put my husband into care -- thats if anywhere would take him- as his age is a huge block on this. I as well need my husbands pension to pay the bills, eat , house , car. But we aren't allowed these things. Its no wonder us carers get ill.
  10. Big phil

    Big phil Registered User

    Jun 27, 2007
    East Sussex
    keep fighting..

    Hi Megan.
    I have been in your position.. My wife was sectioned so was fully funded for a long while. Having sent her to a NHS assessment centre where they allowed her to fall ..twice and break her hip. not happy with that they put in a screw...straight through the ball into the socket. Course my wife (under 60) couldn't complain as by this time she had lost the ability to speak. Now to the nub of the story.. as my wife could no longer escape because she couldnt walk ... They (anonymous beaurocrats) decided ..if we can reclassify her and remove the section... we can screw a contribution from her husband!! good scam eh?? (note the hint of cynicisim). I battled against this discovered their 'criteria' and have had to pay. However CRAG says you SHOULD be able to keep sufficient moneys for the claimant to meet their financial obligations. Follwing lengthy arguments with my County Council, during which time they attempted to give me the brush off... I wrote to my MP amazing the effect that had on them.. for a few years.. they have just re written the agreement and are trying to make me pay full wack again. I will be fighting.
    Conclusion..Get a copy of CRAG quote it and claim Hubby is liable for half the mortgage (if you are jointly named). Dont take NO for an answer.
    The bean counters are only guarding their bonuses!!!! :mad:
  11. Big phil

    Big phil Registered User

    Jun 27, 2007
    East Sussex
    A ps

    PS My Council are crafty.. they only pay the nursing home what they feel like and leave it to you to find the rest knowing its your loved one in there.. emotional blackmail I call it.

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