New Subscriber - hello to all

Discussion in 'ARCHIVE FORUM: Support discussions' started by claire0123, Oct 6, 2004.

  1. claire0123

    claire0123 Registered User

    Oct 6, 2004
    Dear All

    Thought that I would Introduce myself - My name is Claire and I am 28 years old and my Nan has suffered from Alzheimers for about 6-7 years, but has been detoriating badly since we lost my Grandad 5 years ago.

    She has been in a normal nursing home for about 2 years but we have since been told that they can't look after her now and she has been moved to a private home at a huge amount of money each week for her care.

    It's heartbreaking and really hard as she doesn't know who I am anymore - and i find it really heartbreaking to see her and it upsets me every time that I see her.

    I feel that joining this forum - I can learn / and give support from people in the same situation - it's good to know that there is always some one to talk to especially in a forum, when you sometimes feel that you can't talk to your family (because you don't want to upset them) and friends (who don't understand what your going through)

    Sorry to ramble on,

    Looking forward to meeting new friends


  2. susie

    susie Registered User

    Nov 30, 2003
    Hello Claire
    Sorry to meet you here but you'll find plenty of f riends who are willing to share experiences and to help you with any problems.
    There are plenty of laughs as well to keep the spirits up.
    As regards the nursing home, have you had an assessment done and explores all the funding avenues? Some of the more experienced posters can give you all the info on that or try the fact sheets.
    If you have any worries offload them here as it is often easier to speak to a stranger.
    Keep visiting your Nan as long as long as you feel able even if she doesn't register the visit as none of us knows what an AD sufferer registers behind the illness.
  3. claire0123

    claire0123 Registered User

    Oct 6, 2004
    Thanks for making me feel welcome

    Think that my Dad / Uncle and Aunt have explored all avenues for funding etc - this seems to be the best home that she can go in but still be near to family.

    I think that I will continue to go and see her - however hard it seems - as my Dad said that I didn't have to go anymore if I didn't want to and to remember Nan as she was - but then I feel guilty as it's my nan and I love her to bits and I should go and see her, although I try to do it with my Dad or a relative as at least there is support there, on my own it's just too hard.

    Thanks for your kind words, it's nice to know that there are people logged onto this forum who are sharing the same experiences and no longer feel alone in coping with this 'living berevement' - as it's been called by the association.

    Best Wishes and kind regards

  4. Jude

    Jude Registered User

    Dear Claire,

    Thank you for your very thoughtful post and a warm WELCOME to TP.

    This forum can be a lifesaver in that you have instant access to people who DO understand exactly how you feel. We were actually discussing the issue of friends and family last night and how difficult it can be to talk to them.

    I shall enjoy reading your posts.

    Kindest regards,

  5. claire0123

    claire0123 Registered User

    Oct 6, 2004
    I will read them in my lunch hour

    where can I find them?

  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Claire

    Ah, it is hard, isn't it?

    All I will add to what the others have said is that the 'remember him/her as they were' route may work for some people, but it takes no account of the fact that the person who is ill is still there, living and breathing.

    They may not be as they were, but not to visit because of wanting to remember their past is, in effect, saying that one is going to forget about them in the present.

    As Susie said, we none of us really knows what the sufferer can perceive. There are frequent times when I visit my wife Jan, and think "ah well, she's finally lost it entirely".

    I thought that two days ago, most recently. Then yesterday I went in and as soon as I spoke, she gave me the most radiant smile and said "oh yes!" Throughout my hour with her, she smiled frequently, and turned to me almost as if she could see me and recognise me.

    Did she know it was her husband of 36 years? I have no way of knowing.

    But would anyone else have happened along at that moment and said "hello" and given her that moment of happiness? Probably not.

    As good as the staff are at Jan's home, there were only two available for the six residents in the room during my visit at lunchtime, and the one who was giving Jan one-to-one care was an agency nurse. She then moved to look after someone else when I was there but spent most of my visit looking at Jan across the room as if she were a different person from the one she had been looking after prior to myarrival.

    It may be that at some stage I will reduce my visits from 6 times a week to maybe one, when the condition gets a great deal worse. At present Jan can't see, speak, walk, do anything for herself. Things have to get worse than that!

    For everyone it is a personal decision and there are no rights and wrongs. You just have to do what you can live with.

    Best wishes and welcome to Talking Point.
  7. claire0123

    claire0123 Registered User

    Oct 6, 2004
    Brucie / Suzie

    Thanks for your kind words of welcome - I feel that I have been a member for ages - as all the things that you are saying are so true and it's so nice to relate and know that people are understanding this heartbreaking condition, as many people don't understand.

    The last time I saw Nan before she was moved I went with my Mum and Dad, and when we got there - the only word I can describe it that she was in a bubble of her own world - I just completely lost it - for a women who was very proud and always took great pride in herself to see how she is now - I just went outside after 10 minutes - sat on a wall - had a cigarette (bad habit) - and cried my eyes out !!

    But at least now i know (hope) that the home she has moved to is better for her as it is one-to-one care and they are trained in the condition.

    Thanks for caring and listening


  8. Jude

    Jude Registered User

    Dear Claire,

    On 'Just a Newbie' Thread I think.

  9. Katy44

    Katy44 Registered User

    Sep 14, 2004
    Hi Claire.

    Sorry to read your post. As far as going to visit her goes, that has to be your decision in my opinion based on whether you feel she gains anything from it, and how much it upsets you.
    My grandma is in a similar situation, and I totally agree with you - it's horrible to see someone who used to be so proud the way she is now.
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi Claire, my own daughter often used to end up outside in tears, but she still wanted very much to be there for her nan she said. We all did, it is not easy, but if that is the way you are, like Brucie says, there will be times when contact is made. My Mum had lucid periods right up to the day she died, not very long at a time, but she would hum along to a favourite tune, say "Hello my love" as if she really recognised my son and argue as they always did with her sister in a lighthearted way. Then, in a flash, it would be gone again. Only you will know what you feel best to do, but we are with you every step when you need us. Love, She. XX
  11. karen_white

    karen_white Registered User

    Apr 21, 2004
    I can understand how you feel Claire. When my Dad started changing from his vascular dementia I found it very hard. I tried desperately to hang on to my dad how he was - not who he was turning into. Especially went he went into the home, he changed dramatically.

    I read a great message that Bruce has put on TP about forming a new relationship with Dad as he is now. Sometimes this can be very difficult and upsetting, but it certainly has changed my visits with Dad and made them easier all round - it didn't happen overnight though. I try not to dwell on what Dad used to like to talk about, hear about and do, but what he likes now....which isn't a lot at times.

    Last night we sat and talked about his day and what he'd been up to (Dad can no longer talk very well and cannot be understood), but my replies seem to encourage him. I talk about the weather each time I see him and how other members of the family are. It's very repepitive as he can't remember a thing, cannot talk, sometimes finds it hard to understand and has lots of confusion because he sees things that aren't there and cannot understand why we can't see them....even if we try and see them... if you know what I mean.

    I don't know whether Dad knows who I am or not. I don't know what stays with him, but I do know he's still my Dad...Nan...Wife....Mum...etc. Sometimes the visits are only for us or to give support to others who had a closer relationship with Dad - like my Mum.

    I can never go on my own to see Dad now as it's too painful. Like you said, it's good to be able to go with someone for support. Then you can always chat to eachother if your Nan is quiet and she might still feel involved.

    Take care.
  12. storm

    storm Registered User

    Aug 10, 2004
    Hi Claire,Its great to have you on board i would like to give you abig hug! I take comfort from the fact that my mum seems very happy in her little world of alzheimers it is only when she is aware she is doing something silly or remembers that she as forgotten something that she gets upset.My daughter who is 30 felt like you in the begining but after a period of time she now says nan may not remember all our shared memories but i do so we will keep on making new ones. luv storm
  13. TED

    TED Registered User

    Sep 14, 2004
    Hello Claire
    I am glad you found us and do hope you gain the level of support and advice that I have found in the short time I've been here.
    At first there is a lot to read it's a bit of an overload, but the best thing I've found here is that you have someone to ask even the most basic of questions ... and you dont even have to make much sense either (well i didnt .... and I got some great responses)

    Anyway, what I wanted to say was 'welcome' and know that you are in one big family of people here all aware of what it's like to live with this condition each day.

    take care
  14. Chesca

    Chesca Guest

    Dear Clair

    Just like your lovely Nan, I have a wonderful Mum in an EMI nursing home who every time I see her takes a little part of me. Sometimes she is not aware of who I am, but I know who she is, what she has been to me in my life and how much I love her, so very very much. I think your Dad is trying to protect you from some of the grief, understandably.

    What Bruce says about his experiences with Jan are true also for me: just when you least expect it something will happen that will make you glad you were there. If you spend time with your Nan there will be experiences of an awareness, simply by the very nature of your bond, that she will relate to. I'm not providing a guarantee this will happen but there have been times when I've sat with Mum for over an hour and just before I go she will ask me if I need some money for the shopping and do I want her to come with me. It is not very lucid but I know from experience and the inflex in her voice what she is saying.

    Also a swift course in Jumbly: she says lkjlj lkjlkj lkj and I say, 'I know, but you did your best' or 'did he really do that?' any old thing. She has a response to the voice that nobody else listens to because she is assumed not to have one simply by the nature of her illness.

    Lots of many good wishes
  15. Kriss

    Kriss Registered User

    May 20, 2004
    Hello Claire

    Welcome to our corner of the World - an upside down one it might seem at times, but always full of warm wishes and sharing. You will notice a general trend that the darkest of initial postings can end up in hysterics - its what keeps most of us on some sort of track!

    I hope you can continue to visit your Nan, I'm sure you and other members of your family will find it easier in 2's, or more, than going alone. My Aunt currently speaks a lot but very little of it can be made sense of so we continually respond to the gist of the words and hope we get it right. It is always much easier with another visitor to involve her in a "conversation" without adding the pressure of one to one discourse.

    Go with your feelings, sometimes you will feel up to it and others maybe not.

    Warmest wishes
  16. claire0123

    claire0123 Registered User

    Oct 6, 2004
    Dear All,

    Thanks to you all for making me feel so welcome - it's nice to know that if I feel low or upset and no-one understands, that they are people here who are going through the same thing and hopefully I learn from your words and comfort

    Thanks again


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