1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. katherine

    katherine Registered User

    Sep 5, 2006
    57
    Hello
    Im just writing about our experience with getting help for our mum, as we have just been given funding for round the clock care at home for my mum. We've got it from the social services in the form of direct payments and also funding from the Independent Living Fund. This means that now we can employ our own carers to look after mum at home for as long as possible. It's been hard work getting the money but it is out there. Mum lives on her own and up until now she has had a combination of family and friends look after her and agency people. The agency staff have been ok but it all feels so bureaucratic and impersonal - the individual carers we have found so far who will work for us are wonderful - they are committed to working with and in our family and are amazing.
    I just wanted to share that as it's a positive story in terms of getting the right help. It is out there if you can really fight for it.
    Katherine x
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Well done Katherine! Is your mum by any chance under 65? I know someone who gets help from the ILF following several strokes, but it only seems to apply if you're under 65.

    Jennifer
     
  3. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    I see from your early posts that your Mum is only 59 (or is she turned 60 now?). This sounds like something that could be very helpful for families of loved ones aged under 65. Congratulations to you and your family for persisting with the effort needed to get the funding. I'm so glad for you that you have found such high quality carers too. All in all, it is a good outcome for all of you. Well done!!
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Well done from me too. It just shows what you can achieve if you persevere.
     
  5. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Katherine
    Great news,how lovely for you and your mum,there is no place like home.Really happy for you and I hope things go well for you all. Taffy.:)
     
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Now that does sound like good new .

    Shame its only for people under 65 , does that mean someone live in or they do it in shift work ?

    Never heard of
     
  7. katherine

    katherine Registered User

    Sep 5, 2006
    57
    thankyou all.
    The Indpendent Living Fund is for people under 65. They're well worth getting in touch with. My mum is now 60 so is eligible for it. I think if you are given it before you are 65 you can continue to get it after that age, but new claims can't be made after 65.
    The people we have working for us aren't live in. They work in shifts, although saying that one lady is going to do 2 whole days so i suppose that is kind of live in.
    Thanks again for the encouragement!
     
  8. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    Please tell your secrect on how to get the 24hr care. My husband needs 24hr care but i am having a constant fight to get anywhere near that. With ILF and Direct Payments it amounts to 27hrs care a week and ILF are going to cancel it if i dont contact them oopps my husband doesnt contact them. He can't and i've lost my voice - nightmare- plus ILF want us to pay over £300 a month which we can't afford to pay. I have a meeting on the 25th with a new consultant - hope i've got my voice back- the previous one said he needs 24hr care.
     
  9. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Thanks for sharing that information - my dad is keen to look after my mum at home so I think that will be helpful for us for future use - although do they take into account savings etc? Everything seems to be "means tested" and dad does have some savings but he's only 60 and he'll still need that money to support himself.

    It's odd really - I've worked in the DWP my whole working career but I hadn't realised until now how little is paid to carers - considering that at home carers are saving the country a fortune in hospital and nursing home fees - it's really not good enough at all is it?

    I'm glad you've found good carers - it is what we intend to do with mum and I must admit I've been worried about "will we be able to find good carers, will they treat mum well". I'd be interested to know how you went about it - are there agencies or did you advertise yourself?
     
  10. katherine

    katherine Registered User

    Sep 5, 2006
    57
    Hello again
    Infortunatley there's no secret to getting this amount of care. we just wouldn't budge on it and i had a few hysterical phone calls and constantly said that mum was not going into a home no way - and we had the support from the CPN and consultant etc...so medical opinion was on our side. I suppose that fact that she lives at home helps, and she doesn't have any savings or decent pension or anything so none of that stood in her way. She does though have to pay a contribution of £76 per week towards her care, which I think is half her disability living allowance.
    I suppose the fact that she lives at home on her own made it easier for us to get 24 care as she can't be left alone - whereas because i presume you (chip) live with your husband they will see you as a carer and keeping an eye on things - even though you so clearly need the support.

    As for Kate's question about where we found the carers - they were through word of mouth really. One worked for another family in a very similar situation to us so we tracked her down - another was someone we found about who was working for an agency locally. But we're about to put some adverts in the paper to find some people because we still haven't got enough yet...

    It all takes such a lot of time - and effort...i'm pooped...x
     
  11. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    Thaks for the info Katherine. Will see what the new consultant is like at the meeting week on Wednesday and let her know how much i have had to fight to get anything. I have also filled in a survey from carers uk about the support / or lack of support carers get in Scotland. I'm afraid in my case i have put in a bad report of my region.
     

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