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.

Going through the motions

Discussion in 'I care for a person with dementia' started by Linbrusco, Oct 30, 2015.

  1. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,578
    Female
    Auckland...... New Zealand
    Very aware of the differences in Hospital & Social Services between countries, but at the end of the day Mum with AD & Dad with MCI, having hospital appointments with Geriatricians, Memory Teams, Alzheimers Worker and Hospital Needs Assessment Teams, just feels to me as going through the motions , with little or no impact.
    We just seem to go around in circles.

    I am the main carer for both, predominantly Mum of course.
    I get 28 days a year allowance for what is called Carers support to pay for family, friend or external agency to take Mum for respite or come in to her home to administer medication or check up on her if I wasn't there. ( Emergency respite is available and fully funded if required)
    Mum gets a mobility card for parking, and a disability allowance for her medical alarm and GP visits and thats it.
    Mum & Dad have refused all other help, home help, daycare etc.
    There is more practical support out there as Mums AD gets worse but she refuses it.

    All these appointments do nothing other than to prove to me how frustrating the system is, and Mum & Dad get asked a million questions, which are never answered honestly of course :rolleyes:

    Feels like I am just waiting for something to happen to force change.
    Not a nice feeling either :(
     
  2. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    You start with loads of appointments, don't you. Don't know if it's the same for you, Linbrusco; but with me, I was promised all sorts of things that never happened. Years went by. It took a crisis for our needs to finally be met. When they were, hubby suddenly got the care we'd been needing for a long time.

    In the meantime, before my husband went into full time care; I'll be forever thankful to my housing association who put grip rails in our bungalow to help me get husband off the floor! He was dreadful on his feet and could never remember that if he got down on the floor to feed the cat, or whatever; he couldn't get up again.

    Life was hell before the grip rails, but better with them, especially due to my spinal condition.

    To see him now, he's a completely different person. He's never forgotten me, and when I see him, he always looks so well. Still spends a lot of time in his bed over there, but at least he's now clean; eats properly, and can walk with the aid of the grab rail that goes the full length of each wall. Bit like a wall bannister! Brilliant thing.

    I make use of the grip rails at our place, now, as my own arthritis has taken a nosedive since I've lived alone! But I'm happy. Glad we've both got through the nightmare of dementia reasonably intact. Very few problems to have to deal with, now. Must be proof (I sincerely hope), that things do eventually get better. It just often takes ages to get to that point :(
     

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