Need support

Discussion in 'I have dementia' started by Cazabelle, May 16, 2018.

  1. Cazabelle

    Cazabelle Registered User

    Jul 21, 2017

    My mum has Alzheimer's and vascular dementia which has progressed over the last few months. She lives at home with dad as her sole carer and unfortunately I live 4 hours drive away.

    Having looked after mum this week whilst dad has gone on a break, I realise they need support.

    Mum cannot do anything herself, other than dress and toilet etc. She doesn't know how to shower or wash hair so I think she needs help with this (she smells!), cannot cook, cannot make a cup of tea, cannot use a tv remote etc.

    They live in Suffolk, UK and currently get no support other than a 3 monthly visit from a CSIP person sent by surgery just to check in all ok. No financial support (i applied for benefit but rejected, they are financially ok at the moment but i worry about care home costs!).

    I feel we are unsupported and don't know where to get help, how often she would need a home visit (for example) and how much this would cost. My dad is also very stubborn and won't ask for help so I feel I need to get this in place for them.

    Can anyone advise what they do and how frequent they get home helps in, what they get them to do and if this is helpful etc? An idea of costs would be useful too .

    Thank you all.

    You carers are angels!

    Cazabelle x
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #3 Shedrech, May 16, 2018
    Last edited: May 16, 2018
    hello @Cazabelle
    for an assessment of your mum's care needs contact her Local Authority Adult Services - she has a right to this, as does your dad to a carer's assessment
    a care package might include home care visits, to help with personal care, including washing, meds and meals, with maybe a sitter/befriender, some day care and respite plus a visit to their home by an OT to suggest aids and adaptions that might help
    maybe let your dad know that as he's paid into the system all his life, he has in effect paid for this, so he may as well avail himself of any support
    as for finances, the LA will carry our a financial assessment only on your mum's income/savings (NOT your dad's), and if she has little, then they will at least part fund the care - the marital home is not part of this assessment, so reassure them that they will not even have to think of selling to pay fees, which is what some folk have come to believe
    do apply for Attendance Allowance again, being blunt about the tasks your mum is no longer able to do for herself - eg even though you say she dresses herself, how much prompting does she need, are clothes chosen and left out for her (would she just put on the same things all the time if left to herself) can she do up buttons/fastenings - and when it is in place, contact the council for a disregard regarding Council Tax, so your dad is assessed only at the single occupier rate
  4. Cazabelle

    Cazabelle Registered User

    Jul 21, 2017
    Thank you so much for your replies. Some really useful information here I will definitely look up. Sometimes there's so much information out there it's hard to track down what you need so this gives me a starting point .

  5. Cazzita

    Cazzita Registered User

    May 12, 2018
    Just to wish you lots of love and luck. Seems like we are both at the start of a long road... C x
  6. Cazabelle

    Cazabelle Registered User

    Jul 21, 2017
    Thank you. I wish it was a road none of us had to travel down. Best of luck to you also and do shout/ moan on here I do find it helps xx
  7. Cazzita

    Cazzita Registered User

    May 12, 2018
    I will indeed, thank you Cazabelle. Mum had the memory test yesterday and got the answers wrong - although she thinks she did well! We are waiting for brain scan appointment now xx

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