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. nessy22

    nessy22 Registered User

    Nov 22, 2014
    42
    I have not posted for a long time, always thinking things might get better after the initial crises of a year or so ago. Mum was diagnosed 4 years ago, in a home now for a year, frail but mobile. She has always been independent and liked getting her own way. Has never 'accepted' diagnosis of Alzhemers's nor that she could not look after herself any more. She refused all help ( and still does ). Hates living in a 'prison'.

    I have tried everything in the 'careing communication' advise link. Tried to distract ( no way ), tried not to reason, argue nor confront. Just can't manage it.

    What can I say if still she asks time and time again for the evidence about what she did 'wrong', ( not against the law to go out without shoes etc, one day she was at the bank paying bills and the next day put in prison ).Culminating in that I am such a xxxx of a daughter who did not get a lawyer to stand up to the doctors. That is what she truly believes and I fully understand that and how scary it all is but I can say nothing which 'helps' except leave the room. She sees through all 'love lies' and the reply 'we just want to see that you are safe' is a big mistake as that is the last think she wants.

    There is also the guilt kicking in because she is not staying with me, being looked after by me. I tried this and it was a disaster.

    This is not meant to be a sob story - but I just want to have any advise with how to deal with these specific questions in case there is someone out there with the same problem. I am trying to be cool headed but just couldn't take any more today.

    Just writing this down has helped and I know there is no logic to be applied here. I probably should stop hoping that she might be happy one day and just accept the situation.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,860
    Female
    Scotland
    #2 marionq, Dec 14, 2015
    Last edited: Dec 14, 2015
    My advice on this is no doubt rubbish but I have noticed that some PWD give their nearest and dearest a very hard time but when they are not there things are fine. A friend I made through going to Alz groups has a partner who will only go on sufferance to one day at daycare because he hates it and hates her for sending him. I have sat in on several of these sessions and he is happy as Larry. He must be getting some satisfaction out of giving her an emotional kicking!

    Meanwhile she is looking so stressed and ill and needs him to go to two or three days at daycare to give her a break. I can't get her to accept that she should just send him as he wont know what day it is anyway, and that he is exploiting her guilt.

    You Nessy have done what you can. We are not Gods. We are real fragile creatures ourselves who need a life. Would you punish your daughter in this way? No. Don't punish yourself either. Look in the mirror and tell yourself you have done your best and Mum must live out her allotted time and you yours in your own way.

    Good wishes.
     
  3. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    108
    Feel for you Nessy22 because I have similar issues. My parents have been in a CH since July. I feel I've done absolutely everything I can to make them safe, cared for and in a lovely environment (CH is really lovely) but the hard part is their state of mind and the hard time I get from them in terms of constant questioning.
    Very similar to your Mum. Questions about the legality of the situation, when they are going home, why they are never seem by Doctors (they are but never remember) and why I never go to visit (I go every other day).
    It's very wearing...and when they are particulary bad my visits are very short because it's extremely difficult to deal with.

    The only way I've found to cope with it is to judge within the first few minutes of a visit whether they are on a good day (when they are very enjoyable to spend time with and like 'my parents' again) or a bad day (when frankly it's a bit of a barrage of abuse) and do a very short visit or long visit as appropriate. I take the good times when they are there and try to remember that the bad times and agitation isn't their fault.
    And I try not to answer a difficult question directly but say 'I'll try and find out' or 'I'm not sure' rather than reason with them...because it doesn't work and causes agitation.

    But it's hard. Last week on a particularly bad day my Dad screamed 'I'm ashamed of you' across the hallway of the CH. Yesterday he was telling me how grateful is for everything I do for them. Clearly he has no memory of either of these occasions but sadly I do :(

    Terrible illness. Remember it's not your fault nessy22 and you are doing the best you possibly can in a situation you really didn't ask for.
     
  4. nessy22

    nessy22 Registered User

    Nov 22, 2014
    42
    Dear Marionq and Bessieb,
    thanks so much for your replies and words of wisdom. This is a horrible situation for everyone but talking point helps you feel that you are not alone. Best regards to both of you.
     

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