1. traceyandmum

    traceyandmum Registered User

    Oct 3, 2005
    hi to every1 here

    my mum was diagnosed last week,im finding it hard to accept,i find it hard to have had the same conversation everyday for the past year,my mum has always led such an active life,this illness just isnt fair is it? tracey xx
  2. daughter

    daughter Registered User

    Mar 16, 2005
    You're right there Tracey. It's so hard to accept that it has happened to our parents. Welcome to TP, there's plenty here who will identify with you. Keep posting, it certainly helps!

    Best wishes,
  3. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Tracy and welcome
    This is a horrible disease and you will find many here who think the same way as you and I.

    Post when you need
    Best Wishes
  4. connie

    connie Registered User

    Mar 7, 2004
    Hello Tracey, welcome to the forum. Here is where we rant and rave, but also laugh (sometimes). Just post whenever the mood takes you - as they say "it's good to talk. Connie
  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Yup it sucks big time


    I'll just add my agreement, yes this disease is absolutely unfair. I can't count the number of nights I've sat in bed trying to think of a worse fate for the sufferer or the carers, i.e. something I could say 'Well at least we don't have to deal with....' about, or something I could think of so I could say to myself 'Quit your whining, its not as bad as .....' and I couldn't come up with anything except, both my parents having the disease!

    It sucks it sucks it sucks.

    Nevertheless I have tried to come up with some positives. The positives I have come up with are:
    1. I have become an unbelievably stronger person;
    2. I have learnt what true compassion is;
    3. I have learnt to cherish the truly happy moments and take nothing for granted;
    4. I have developed a bond so unbelieveably close with my father, despite his apparently disappearing (mentally) in front of me, a bond that transcends words and gestures;
    5. I have learnt what makes a true friend;
    6. I have learnt what is important in life and am beginning to be able to let the little stuff go;
    7. I have learnt how to understand others in similar situations and as a result will hopefully be a better friend, a better person and be able to help others;
    8. I have learnt to be more assertive, as I have had to stick up for not just my own welfare but my father's;
    9. I have learnt to seize the day and not waste a second;
    10. A weird one, but I was always afraid that if I had a disabled child I would reject it, but now I understand that love goes beyond all this and so I am no longer afraid of what I might do if this happens, and I now am comfortable with pretty much any person suffering a disability and value them as I see being 'able' does not make one better;

    Of course I would trade all these new abilities in a second just to have my father back and without dementia, but some positive outcomes are better than none, I figure. Best of luck and please use this forum to release your stress, hurt, sadness, there are lots of people here who will understand.
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London

    that is such a fantastic list of positives, and I can relate to every item on it. I can't even think of anything to add. Fantastic.
  7. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello Tracey

    I understand exactly how you feel.

    My Mum has AD too and was diagnosed over 3 years ago. It is cruel and unfair, that kind and loving people have to suffer this horrible disease, but it is not going to go away, so we have to deal with it.

    The repeated conversations are new each time to Mum, and although I am often a stranger to her, I can give her so much love and still have good moments as well as bad.

    The Mum I love is still there somewhere and will surface at odd times, so I always try to always smile and treat her the same way I always have, adjusting as her needs change.

    Most important of all, we need time for ourselves. I have found the time since the diagnosis and especially since my Dads sudden death a year ago, a long grieving process. I have accepted that things are as they are, even though it does not seem fair, but I still want my Mum back.

    Get as much support as you can, and share your feelings with anyone you can.

    Thinking of you

  8. Kriss

    Kriss Registered User

    May 20, 2004
    Thank you Nat for that wonderful list of "positives"!

    It is so hard to see them day to day but it helps so much to take a step back and recognise this side.

  9. traceyandmum

    traceyandmum Registered User

    Oct 3, 2005
    thankyou for all your replys,im so glad that i found this website,its helping me so much to know that you all understand the pain that this illness causes,and in time to come after i have finally found the strengh to accept it,then im going to stay on here and offer support to any1 else that needs it,thankyou once again xxxxx
  10. EllieS

    EllieS Registered User

    Aug 23, 2005
    Dear Tracey & your Mum

    What a wonderful list of positives Nat listed.

    If I'm honest I've not yet come to accept any positives - but I will certainly strive to now!

    And there's another one as well - knowing that there really are people out there who care, understand and help. We may not ever meet but the help you all give far exceeds anything I imagined before I found this forum.

    Mum's sister visited her for the first time since she moved close to me and as she works in a caring environment I was so pleased to have her feedback on Mum and the home.

    Thankfully, she feels that it is the right place for Mum and she agreed that although there's no ideal place Mum did seem to be calm and kinda "okay".
    The 2 observations she made were: 1) that Mum should not have the cot sides up at night and wear a "nappy" because if she wanted to go to the toilet she couldn't and it might make her lazy and not try to go or ring for assistance to be taken (the cot sides are up because she didn't seem to be able to settle at night - possibly because she'd had a number of falls due to a "stroke" shortly before moving to the new home. I was asked if it was alright and I did sign to say it was after talking to Mum about it - she's quite okay and able to discuss this sort of thing. So, I'm going to talk to the Home further about this.

    2) When Mum awakes each morning, she is washed, dressed and taken to the large lounge with everyone else - where she stays for the day. I'm going to suggest that she stays in her own room (which is very nice) with the tv or radio/tapes on until mid-morning so that she's not having to sit in the same environment (where unfortunately most of the residents have deteriorated much more) - also to ask if she could be sat in an unused small lounge with one or two of the more able residents for a short spell each day.

    The home is nice but I can't help feeling it's all down to who's on duty on any one shift. They've just got a rabbit and new hutch etc - which may be a nice idea, but it's not going to be any good unless the staff take the residents to the rabbit because none of them can remember where their own room is let alone where the rabbit lives. They're also talking about Memory Lane corners with old fashioned chest of drawers full of old style clothing etc, old fashioned telephone, old fashioned typewriter etc etc. Is this really going to help Mum and the other residents or is it just for show! Am I being cynical! I'd rather the staff spent as much time as they could sitting with the residents (not with each other).

    There's one particular carer who is absolutely wonderful - why can't they all be like that. Is it because the pay's not good enough . We're having to pay £750 per week for this EMI Nursing Home placement - surely they could afford to pay superb wages to reward and keep the good members of staff!

    But let's not go in the direction of the costs - because that's another thing........

    Sorry I've droned on - and probably brought you down after everyone else has brought you up!

    Ah well!

    Best Wishes and be good to yourself
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    surely they could afford to pay superb wages to reward and keep the good members of staff!

    I don't think that most of the money goes on staff per se. A place I know of, the rate is £5 an hour for permanent staff [agency staff cost at least twice that plus agency fees]. But there needs to be 24 hour and holiday cover, plus as high a carer/resident ratio as possible. Continuing training of staff, and lots more, I'd expect.

    Maintenance of fabric of building, of all the necessary and legal safety features, etc takes much of the money.
  12. trendy

    trendy Registered User

    Oct 19, 2005
    tyne and wear
  13. connie

    connie Registered User

    Mar 7, 2004
    Welcome trendy

    Warm welcome Trendy. Glad you found us. Everything is hard to take in with the diagnosis, so please post your concerns and questions. Connie
  14. trendy

    trendy Registered User

    Oct 19, 2005
    tyne and wear
    Thanks For Ans Me Iam So Depressed At The Min With All Thats Happin With Mam As I Dont Feel Like She Is My Mam At The Min And Dont No Where To Start With It All
  15. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hello Trendy

    It sounds as if you may be in a similar situation to me; my Mum is in the early stages, and is still able to live at home (in her own home) with some practical support from me. It's an absolute bummer that a loving, bright, intelligent parent can be stifled and beaten down by this awful disease (believe me, in my head :mad: I am using much worse language, but don't want to break the TP posting rules)

    Of course you are feeling depressed, so you should see your Doctor for help and advice, both about your own health and about your Mum's care and welfare. Do you both use the same GP? I asked about transferring onto the same Doctor, & my local health centre were very co-operative. It makes sense, as you will need to discuss your Mum with 'her' Doctor, and your own health concerns (stress, depression etc.) are likely to be linked to your Mum's health anyway. Also, your GP should be able to put you in touch with other avenues of help & support.

    As for your feeling "I Dont Feel Like She Is My Mam" I understand exactly where you are coming from with that too. I suppose we all feel like that to start with, once we get past the disbelief stage. It's almost as if the adult person starts to revert to being a child again, isn't it, only without the capacity to learn & remember things. So you end up looking after your own Mum as if she was a little child who needs care & protection. Pay-back time, I suppose, for all those years when I was an annoying little brat, or a terrible teenager. But Mum had endless love and patience for me (even if it was tough love sometimes), so I guess it's my turn now.

    Keep posting, it helps to let out some of the pain and frustration to people who understand, and you can get a lot of help and practical advice here too.

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