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We need some support

123lottie Member Posts: 1 Listener
I gave up working about 3yrs ago to look after my daughter and granddaughter ,sadly my daughter passed away last October and my granddaughter , after her death we found out that our daughter had a rare connective tissue disorder as do I and my granddaughter , my other 2 adult children are awaiting results , Its a daily struggle to keep everyone well and gradually you cant help but let things like house work and personal care slip just to do the important stuff , I realise I am now the one that needs the help to be able to give the help if that makes sense , my granddaughter is a big part of our lives and we help her dad to manage her care so that would be cruel on her after loosing her mum to change this I am trying to find out if we are entitled to any help for her or myself we have loeys dietz and need a lot of daily support to cook clean and dress and that support comes from my husband who is trying to work but nearing retirement and has health issues himself from trying to care and provide for us all , any advice would be appreceated


  • thespiceman
    thespiceman Member Posts: 6,390 Disability Gamechanger
    Hello @123lottie Pleased to meet you welcome. Thank you for sharing your story.

    Please can I advise look at our posts and threads on Specific conditions. Also I am sure many of our community will response with information and support.

    I also am sure one of the community SCOPE team will advise as well.

    Hope you find the support you need

    Take care

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello Debbie (?) @123lottie and a warm - if slightly delayed - welcome to the community.  Sorry I could not respond sooner, and very sorry to hear of your situation. As you may have seen elsewhere on the site, I too have lost a child and know something of what that means.
    Now, I'm not an expert on such things but I think it might be worth your while trying our online benefits calculator which should help determine whether anything is available to you in terms of financial help.
    I'm also going to tag one of our most knowledgeable folks here in the hope that she may be able to help you further, or point you in the best direction.
    Hope some of this helps a little. You matter here.
    Warmest best wishes to you,
    Tagging @Sam_Scope
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    Hi @123lottie, and welcome! It's great to have you here.

    So sorry to hear about what your family are going through- you're absolutely right in saying that you need to be supported to continue offering your own support. As Richard says above, the benefits calculator is a good place to start: have a go, and please do come back to us with any questions.
  • poppy123456
    poppy123456 Member Posts: 23,696 Disability Gamechanger
    I would advice you to contact your local social services to start with. They will come and do a needs assessment for you. You can either ask your GP to refer you or self refer by googling your local council for the phone number.


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