1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. sistercarer

    sistercarer Registered User

    Jul 29, 2015
    1
    Hi, I'm new to this wonderful forum. Let me tell you my concerns about my mother who has had dementia coming up to 3 years now. My sister is her primary carer, and my sister has to travel a few miles to get to my mum's residential flat. She prepares her breakfasts and dinners for the first few days along with her medication. She's arranged for help to come on some mornings to help my mum wash, dress and have her breakfast and tablets and then someone comes in the afternoon to make sure she has her dinner and tablets and also to make sure her scooter is on charge. This is paid for out of my mum's pension. Lately my mum (who is a churchgoer) goes to church several times a day for something to do and it's the only place she knows how to get to. She doesn't realise that she is using up the power in her scooter and more often than not she's seen getting flustered because her scooter has run out of power. My sister has asked for help from social services but has been told that because she doesn't need help at night then she ought to be fine during the day. They really don't know what my sister has to put up with. My mum has become unhygienic, gets lost, doesn't eat unless someone makes her, and forgets her tablets. There is no conversation from her and she gets really, really upset when visitors leave.

    What does it take for social services to help my sister out? All she wants is some respite for a few days but to get the sort of help she really needs would cost at least £150 per day so someone can stay with her all the time including nights. She just cannot afford this. Where's the help? No one seems interested and how bad do you need to be to get help?

    I sometimes stay with my mum, it could be for 7, 10 or 14 days, and I do this about 3 times a year but as I live in the south coast it is a fair distance to my mum in Maidstone.

    Any suggestions would be most welcome.
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,717
    Female
    London
    She doesn't need help at night so should be ok in the day? That is the biggest load of BS I've ever heard, and if it was true, no one would get the lower rate of Attendance Allowance as that is based solely on needing help in the day! It's more likely an avoidance tactic by a cash-strapped council.

    Get her to call Social Services tomorrow requesting a needs and carers assessment. Carers are entitled to this by law. Tell her to use the four magic words VULNERABLE ADULT AT RISK followed by YOU HAVE A DUTY OF CARE.

    If they still refuse they act against the law. Your sister has to describe the impact caring has on her in detail and ask to be assessed for respite or anything else they can offer - day centres and sitters come to mind. If she does not want to deal with SS alone, she can get advocacy service through Alzheimer's Society, Age UK or the Carers Centre. They can help her prepare a thorough statement as well.

    Good luck!
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,054
    Yorkshire
    Welcome to TP sistercarer - be assured that here we all care!
    I hope you get a chance to read through the various threads here as you will gain a good overall view of what kind of support is available - and, sadly, that you are not the only family seemingly left out in the cold.
    I'm totally with Beate - what has been said to you is tripe. Time to call their bluff.
    Make a list of all the things your sister and you - and anyone else - do for your mum, in minute detail, including when and how often.
    Make a list of all your mum's behaviours and needs, and all those things she can no longer do for herself - think of how she was pre-dementia and how she is now to make you realise the difference.
    Make a list of all your worries and concerns for her.
    Make a list of all the things you would ideally like to be in place to help your mum.
    Start by looking at what you have mentioned in your first post - we know that those are just scratching the surface!
    Then send that list to her GP - s/he may not be able to discuss your mother with you but will have to formally note any information you pass on and must be aware of your mother's situation if she is on medication. Actually I would follow up pretty swiftly with personal contact, especially if your mother would state that she is happy for your sister to sit in on appointments and be consulted.
    Do the same with SS, using the terms Beate has highlighted. Tell them they must assess your mother's needs and do a Carer's assessment for your sister.

    When you've caught your breath, look at the threads about Attendance Allowance and reduction of Council Tax.

    Come back and tell us how you get on.
     

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