Plese can someone help i feel as though I'm on my own with all this

Discussion in 'I have a partner with dementia' started by Martarita, May 16, 2019.

  1. Martarita

    Martarita Registered User

    May 11, 2018
    112
    I really don't know what to do,my OH I'm going to be moved from residential care home to a EMI nursing care home which he really does need , but the thing is he's local authority funded and I've to pay the top up fee which is quite a lot of money for me but he needs the extra care I signed the direct debit form yesterday,and now I'm so very worried that because no one has been from the social services to meens test me to let me know how much money I will have a week so I can try to budget for this top up fee I'm a pensioner and I haven't a lot of money to start with ,I've been really not been well since my husband went in care I don't seem to be able to pick myself up , I don't know who to turn to .could someone please point me in the right direction. Thank you all I hope all this make sense as I don't feel in control anymore.xx
     
  2. Archibold

    Archibold Registered User

    May 13, 2019
    10
    Hi, sorry to hear about your situation. I would say that your oh should have a social worker who is dealing with the transition and finances, and they should meet with you to discuss exactly how much it will cost. I would ask the care home to arrange a meeting with them. The citizens advice beuro should be helpful in looking at your situation and seeing if you are entitled to anything that may help you financially. Hope this helps.
     
  3. Helly68

    Helly68 Registered User

    Mar 12, 2018
    295
    I am not an expert on financial matters (struggling through our own financial assessment) but it sounds to me as though you need independent advice on this - e.g. Age Concern, Carers Centre, CAB. Also, the Council need to explain clearly how all this works - they often dont.
     
  4. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    655
    Female
    Dorset
    Maybe you should ask about CHC funding if he needs so much more care? I don’t think you personally should be paying for any top up in fees. Who asked you for the top up, the nursing home or the Council?
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,449
    Female
    London
    No one can be forced to pay a top up fee so you shouldn't have signed anything.
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,430
    Kent
    I would get some advice about the direct debit you have signed @Martarita. If you have signed it under pressure there should be a cooling off period. I`m not sure whether it`s 48 hours.

    Please phone the Helpline now and see what advice they can give.

    I hate these top up fees. I`m not even sure whether you are legally bound to pay them.

    National Dementia Helpline

    0300 222 11 22


    Helpline opening hours:

    Monday to Wednesday

    9am – 8pm

    Thursday and Friday

    9am – 5pm

    Saturday and Sunday

    10am – 4pm
     
  7. Dosey

    Dosey Registered User

    Nov 27, 2017
    77
    Hi Margarita
    Sorry to hear you are having a stressful time with OH move. I don't think you should be paying the top up. Cancel the direct debit straight away. Was it the CH that asked you to do this? You don't need to set up a direct debit, they can bill you. Also you are not responsible for the top up. This is from your OH assets I.e. Any savings, pension, property. Your home will not be counted in this assessment as long as you remain living there. Is LA paying part of the bill. Ask SS for a financial assessment.
    As you know my OH went into care same time as yours. He received ESA and PIP prior to going into care. He gets LA funding but top up bill is £80 per week. The bill is addressed to him c/o me. I have notified DWP of all the changes both in writing and over the phone. They have still not reduced his monies, therefore I have paid the top up bills from his bank account, leaving rest of money in account in case they reclaim this. I too am worried about this bill as I am not in a position to pay this from my works pension either. The SW has reassured me I am not responsible for this. I have wrote to LA all of above after a telephone call to their office. I have to notify them when changes in benefits occur and he will be assessed. His original assessment was based on his benefits before admission.
    Please don't worry you are not responsible for any payments, this is voluntary payments that family can make but not legal.
    My 4 sons offered to pay top up, but I said no, why should they. OH worked from 15-55 years old before this horrible disease took hold.
    Please take care of yourself, hope move goes smoothly. Keep posting
    Rose x
     
  8. canary

    canary Registered User

    Feb 25, 2014
    9,072
    Female
    South coast
    Im afraid that is not actually true. Top-up fees are the one thing that the person with dementia cant pay for - they have to come from a third party. Social Services dont do a financial check of this third party to check that they can afford it, which I think is very bad.

    Top-up fees are optional, but he may have to be moved to a different EMI which will accept the LA rate. I would contact Social Services and explain that you cant afford the top-ups and and you understand that they are voluntary.
     
  9. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,078
    Female
    Assuming the LA is funding his care (rather than there being any self-funding element) @canary is right. Top up fees have to come from a third party, not from the person with dementia. And they are voluntary, you do not have to pay them. The LA have to find (at least) one care home which will meet his needs and which accepts LA funded clients with no top up.

    However if they offer you this entirely-LA-funded care home and you refuse it (for whatever reason - too far away, you don't like it, etc) and you the choose a different care home which will not accept the LA budget, then yes you will have to pay a top up from your own funds.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    9,072
    Female
    South coast
    I never really understood what happens about top-up fees during the period when the LA is partially funding the fees @Sirena . I had always assumed that top-up fees only came into place once the LA was funding their maximum - on the grounds that the reason for the top-up was so that the person in the care home maintained their £14,000 savings.
     
  11. Dosey

    Dosey Registered User

    Nov 27, 2017
    77
    Sorry if I have got this wrong but that's what I was told about this £80 a week Payment. Maybe it's different when under 65. I have been told that his benefits ESA and PIP will be reduced but there will be enough for this payment and £25 personal allowance to pay into the CH.
    This is such a terrible situation to be in. What happens to people who don't have anyone to pay the top up for them.
    We as a family will cover any other needs for OH.
    Rose x
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,072
    Female
    South coast
    @Dosey - when someone has less than £14,000 the LA will be paying the paying the care home fees - that person then loses benefits, state pension and occupational pension (although a spouse can apply to have one half), except for about £25 personal allowance. The LA will then pay the rest up to their maximum. If the care home wont accept this maximum then the shortfall is paid for by a third party and is known as a "top-up" fee

    It sounds like your OH is part funding the care home and the LA is part funding. My understanding is, that as his savings go down his contribution from his savings will go down, but the amount payable from his benefits will go up as the LA contribution goes up. Eventually, once his savings are down to £14,000, all of his benefits will be taken (except for the personal allowance) and the LA will be paying up to their maximum. At this point, if the care home fees are more than the LA will pay, then relatives will be asked to pay "top-up" fees.

    If there is no-one who is able to pay top-up fees, then the LA is legally required to find at least one care home that can meet their needs and which will accept the LA rate.
     
  13. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,263
    Yorkshire
  14. Martarita

    Martarita Registered User

    May 11, 2018
    112
    Thank you all for your advice I've tried this morning to speak to the social worker but again he's out of the office,as for the top up fees yes it is the nursing home that's ask for this as I think my OH gets full funding limit for his care from the local authority ,but I really want for the social worker to help my get my finances in order so I know exactly what I've got so i can then put the top up fee away weekly and I'll know what I've got to live on ,plus the fact we really don't have the 14,000 pounds in the bank ,I didn't work when I had my children so it was my OH that worked all our married life from being the age of 15 so we couldn't save very much at all ,now I feel I'm out on a limb, I will pay the top up fee I just want to now if I'm entitled to anything so I can budget for it weekly , Thank you all for you support I feel so worried.xx
     
  15. canary

    canary Registered User

    Feb 25, 2014
    9,072
    Female
    South coast
    If you do decide to pay the top-up fee, please be careful as it will go up as his care increases - often by a considerable amount
     
  16. Martarita

    Martarita Registered User

    May 11, 2018
    112
    Thank you for your advice but honestly I really don't know what to do I did think I'll have to see how everything goes over a period of a a few months with budgeting for the top up fee and hoping that I can afford to pay for it . It's all so complicated, but there isn't anymore EMI nursing homes with places available in our area I've put his name down at one which might take him but have no vacancies and there's a waiting list ,one place had a room and he didn't pass their assessment.and the residential home also can't care for his needs anymore.So that why he's going to the one with the top up fee , which I think the other two with waiting lists have top ups as well .Thank you so much for replying to my post ,nothing is straight forwards,as though we haven't enough to worry about,my husband first and then the finances's which we haven't a lot of it is so worrying.hope everything get sorted soon .i do appreciate your reply .thank you again .xx
     
  17. herindoors

    herindoors New member

    Dec 21, 2018
    6
     
  18. herindoors

    herindoors New member

    Dec 21, 2018
    6
    Hi Martartita, I read your post, do you have a social worker for your husband as they should be sorting out the home and the finances's. My father in law had to go to a care home in January, and we got him a social worker who knows her way around the paperwork and finances, of your husband going in a home. Also will help with a financial assessment done on yourself and hubby. They help with sorting out a care home as well and they can help pay for some of the cost of the care home. I know it's a stressing time, I spend 8 mths last year looking after father and mother in law so dad would have to go in a home.I hate him being in a care home but my health has never been very good so we had no choice. He is very happy there, it's me that's hurting. Let me know if this helps you.
     
  19. Denison

    Denison New member

    Jul 12, 2018
    2
     
  20. Denison

    Denison New member

    Jul 12, 2018
    2
    #20 Denison, May 17, 2019 at 10:54 AM
    Last edited by a moderator: May 17, 2019 at 1:30 PM
    Please contact your local CA office or phone their adviceline service on 03444 111 444. Explain your problem and I am sure they will be able to help.
     

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