1. Smiler

    Smiler Registered User

    Jan 8, 2007
    West Yorkshire
    Hi, I've been reading the forums in here for quite some time now waiting for the inevitable, i.e. that my Mum (who lives with me)would be diagnosed with some kind of dementia. Now it's happened (some weeks ago) - Alzheimer's and Vascular Dementia. - She didn't take it in at all and puts all her problems down to her age (86).

    The Psychiatrist said the good news is that she was diagnosed just in time for them to prescribe the kind of drugs that NICE (was there ever such a misnomer) have banned except for people in the advanced stages.

    My mum has been prescribed Reminyl XL starting at 8mg and now up to 16mg - I'm told they will progress up to another level (think it was 24mg).

    I know these things don't work for everyone, but I just hope for a little improvement, however small or temporary, but no sign yet.

    It's very difficult (I know I don't have to say that to anyone in here) but I work full time and I don't want to just abdicate responsibility.

    The ladies at the clinic said they would be contacting Social Services and The Alzheimer's Society for me but I don't know what if any help I can expect (and when).

    I don't want to sound selfish, but I really need to go out one night a week, and I have a couple of holidays booked this year.

    Sorry to go on but it's difficult to talk to friends/people who don't seem to understand.
  2. Helena

    Helena Registered User

    May 24, 2006

    Theres no way that going out once a week or going on holiday could possibly be seen as selfish

    You are entitled to your own life and at 86 your Mother is not really your responsibility

    There should be respite facilities and carers available to help you even if you have to bang hard on the doors of social services etc

    Your 1st priority though must be to get an EPA signed and acted on and registered (you can download the forms etc from Guardianship website

    If you do not get the finances sorted fast things get very difficult and expensive all round
    You can also apply for Attendance Allowance and maybe Carers Allowance too
  3. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi Smiler,

    Oh brother, I so do understand, and it's not in the least selfish to want a life of your own!

    I'm in a very similar position; I live with my Mum, 87y.o., has early stage Alz., is on Aricept 5mg since June. Whilst it hasn't turned the clock back (I don't think any of the Meds can do this) it has slowed the rate of memory failure down a bit, and eased her anxiety state. It took 2 - 3 months to kick in (it seemed to me) so hang in there.

    Are you claiming Attendance Allowance (on Mum's behalf - it's paid to her) or Carer's allowance for yourself? Have you tried contacting a local Carer's group (health centre will probably have a contact number) I do think that would help you learn what may be available in your area. Like this forum (Talking Point) you will find that actual hands-on family carer experience is more relevant than 'theory' from medics.

    Best wishes
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    Make sure that you tell SW all your date for respite , my SW just need one week in advice for respite, I have teenagers so they sit with mum if I want to go out in the evening . so have never ask SW for a carer for the evening , don’t see why you couldn’t , they do an assessment on your mother and for you , it does take a while to get the ball rolling , but once its all in place , life is a bit easier .

    Seeing that you work SW could get someone to sit with your mother or organize day centre.

    My mother on Exbixa and is in late stages , amazing what the medication can do to level the AZ out holding it back
  5. DickG

    DickG Registered User

    Feb 26, 2006
    Hi Smiler

    One thing you must get into your head and hold onto - you are the one person who is crucial in the situation you and your mum are in, without you the ship sinks and social services will have to pick up the very expensive pieces.

    It is essential that you have your breaks, each week and longer holidays, do not make the mistake I made - nobody is invincible. Fortunately this is not just my view but also that of my SWs who have made it clear that by keeping me fit, both physically and mentally, is saving the public purse a fortune. Do not feel guilty, ask for help, in fact insist on help. Good luck.

  6. Smiler

    Smiler Registered User

    Jan 8, 2007
    West Yorkshire

    Thank you to all of you for your very kind and helpful response.
  7. Jann

    Jann Registered User

    May 24, 2006
    tingewick, bucks.
    You're so right Smiler about friends not understanding completely.
    It seems most have no idea whatsoever about AD and its symptoms unless they have been directly affected themselves.

    This of course, is not to say that you can't manage - you will do. As everyone else has said, ensure you have the support of your GP, social services, etc. behind you at every move and don't be afraid to ask questions.

    I have found TP (and Alzheimers Society website) to be a marvellous tower of strength and support with advice - the best so you're not alone.

    Wishing you all my very best,
    jan x
  8. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello Smiler

    Dick's quote is spot on! Enlist the help of Social Services, otherwise you'll end up completely kn**ered. Go ahead and have your holiday. We all feel guilty at some time or another, but come here and it will be assuaged.

    Post again and let us know how you get on ... and where you go on holiday!
  9. Kriss

    Kriss Registered User

    May 20, 2004
    Whatever you do don't let Social Services know you are able to help! If you do you will go right down the priority list. It's a sad fact of life in this age when their resources are so limited.

    In the early "panic" stages when we were almost daily responding to emergency calls from nieghbours (we lived over an hour away) I tried to get help from SS but was openly told that my Aunt was low priority as she had me on hand. She was finally allocated a Social Worker when she ended up in hospital but we never did get to meet her as we made all the arrangements finding a home etc.

    When Aunty was admitted to hospital before Christmas with a broken hip I was asked did she have a SW and I didnt know if to laugh or cry. I'm sure she was a name on their list somewhere but that's as far as it went.

    Good Luck!

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