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. loppy

    loppy Registered User

    Aug 13, 2006
    I think my sisters diagnosis is staring to sink in! I don't feel like I fit anywhere, as she has downs syndrome too and that has a big effect on the progression of AD. She had been put between early and middle stages and we have been told that she has 5 year 7 max. Some days she seems like the happiest person I know others she is withdrawn and quiet.She chokes on every meal and drink and has had a few falls which we are told were siezures. She had been really excited about my family moving back to cornwall to be nearer, then thought we were on holiday. How long before my lovely sister dose not know me, or I her. She is my big sister and is only 35. Diagnosis was about 4 weeks ago, the day after moving house ,and day before going on holiday. Felt like I had to keep a grip for everyone else. Talking about it all is hard. There are so many questions i want answers to, but I scared of the answers. Feel like I'm grieving. but i can't really cry. i thought I could find support here but feel like I'm in over my head when i read the reality of how cruel ad is. and I cant offer anything in return. prehaps its too soon to be here. But I dont feel I have anywhere else to turn. :(
  2. wendy43uk

    wendy43uk Registered User

    Dec 22, 2005

    welcome to tp one thing uou must do is rember to take one day at a time this is very good advice i try very hard to follow this myself and struggle with it a lot my hubby has had alz for allmost 4 years but we was told on 19feb 2004it was the darkest day of our lifes john still noes all the people who are in his life now but cant rember people from his past my advice is see her as much as uou can and when u cant speak with her on the phone take care wendy
  3. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Loppy,
    You are in just the right place- you belong here. Don't worry that you don't feel you can offer anything - you are so new to all of this.
    You will be beginning to grieve for your sister - for the future you thought that you had, but it is being taken away. Just take one day at a time - that is all any of us can do. You still have good times ahead with your sister; as she changes you will love her no less, in fact I think it becomes more intense at times, because you stop taking things for granted.
    You will find that there are times when your brain and emotions allow you to look forward, read up on what may happen, and other times you just have to behave like an ostrich and bury your head in the sand, because if not emotion will overwhelm you. Your emotions will still be very raw from the diagnosis - give yourself time.
    Love Helen
  4. HLon

    HLon Registered User

    May 30, 2006
    hi Loppy,

    thinking of you... so sorry to hear the news about your big sister. Take your time and keep your horizons close. You will discover deep resources both within you, in your sister, and in communities like this one. Your emotions - both the numbness and the grief and sadness and pain - are normal, even if the circumstances are particular. Cycles of grieving will come and go, and I expect that between them you'll find a rhythm of being too.

    Right now, give yourself time, treat yourself very gently where you can and let us know how you're doing. If you want to come and put a post here it can be just that - you don't need to read everyone else's experiences unless you want to (sometimes it can feel daunting, tho' othertimes it's incredibly reassuring that this is a well-trodden path and one we walk in good company).


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