1. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    When I answered the phone this morning, it was the lady from the Alzheimers Society. She rang to say "I just wanted to know how you are and whether you would like to meet up". Well I was stunned because she really is the only one who seems genuinely interested in our real life (Alan's and mine).

    Alan now sees an OT once a week for an hour but after only two sessions they have already informed us that it can't go on forever and they can offer up to six more sessions. I told them I was not happy about this because Alan is having a very negative experience of "help" - he experiences that no one stays around for very long. His experience is that he gives all of himself in trying to explain himself to people and he gets nothing in return. (Admit they are my words not his) but I imagine that must be his experience. I want him to have positive experiences and I don't think it would have been too much to ask for the OT to have been very clear about this in the first place. I am sure I asked her about this at the beginning but there was so much going on at the time I cannot be entirely sure.

    Then this lady rings up (without any request or prompt from us) and asks how things are and whether we would like to meet.:)

    Of course I said yes because I would like to talk to her about this paranoia business.

    Love Helen
     
  2. ChrisH

    ChrisH Registered User

    Apr 16, 2008
    281
    Devon, England
    Hi Helen
    That's a brilliant response from the Alzheimer's Society. I haven't contacted them myself yet but expect to soon to get some help with Attendance Allowance forms that I'm waiting for them to send re my mum.

    Sorry to hear you're have a bad experience with the OT. Once again it seems like the postcode lottery has struck. The OT was the first person to visit my mum after I'd taken her to see her GP (and that was without a request or anything from me). That was back in Sept. 07 and she still goes in to see mum once a month with a support worker going in the other 3 weeks. They've now arranged for someone to go in every evening to prompt her to take her tablet and make sure she's safe.

    Hope you and Alan have a good meeting with the AZ Soc lady.

    Chris
     
  3. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    That's brilliant, Helen. I made a phone call to the AS Legal helpline today for some specific help .... gosh - they were so full of good advice I couldn't scribble it all down fast enough!!!!! :eek::D

    Isn't it wonderful when someone recognises exactly 'where you're coming from' and just what you need without jumping through a million hoops? :)

    Love, Karen, x
     
  4. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    And here's another vote for local branches of the Alz. Society.

    To my mind, it's the same principle as Talking Point - IT'S BECAUSE THEY ARE CARERS or former Carers, and really can identify with all the crazy, illogical & downright weird things that living with dementia can inflict on our lives.
     
  5. Jo-number2

    Jo-number2 Registered User

    Jun 17, 2008
    3
    Hemel Hempstead
    Hi Helen,

    Just wanted to say thank you as you have promted me to make my first call to the helpline and they were fab!
    Jo
     
  6. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    My local Alzheimer's Society were the first people I contacted when Steve was diagnosed and they also have been fantastic. Two ladies, Tina who is the manager is wonderful, she is so helpful in every way and we speak on the phone for maybe half an hour or more at a time just having a laugh in between talking about my husband of course! Penny is the other lady, whenever I rang, she just came to the house and talked, filled in all the forms, benefits and EPA and now she is off sick, we email each other. Can't praise them enough. When I had a meeting with the psychiatrist after Steve had been in hospital for 6 months and he told me that Steve would never be able to come home, he needed to go into residential care, Tina was with me so I wouldn't be alone at the meeting.

    Sue
     
  7. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hi Everyone

    Thank you for such positive feedback. I am glad that the Alzheimers Society is around and available - what would we do without them?:eek:

    Love Helen
     
  8. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hi Jo-No 2

    I'm really glad you found them helpful and maybe we can look forward to hearing all about it if you feel it appropriate to share:) I hope I don't sound too forward.

    Love Helen
     

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