Message from my mum who suffers from A D

Discussion in 'Younger people with dementia and their carers' started by Lauren, Jan 2, 2007.

  1. Lauren

    Lauren Registered User

    Oct 13, 2006

    Havent wriiten in a while becasue i have been very busy as you can all imagine!

    I have got my mum with me who suffers with A D to show her she is not the only one suffering with this awful disease!

    She has a few questions which she wants answering!

    1.) Does anyone else have problems with physically dressing themselves in the morning and at night, and why is this because i use to be able to do it fine?

    2.) What do you do in the day to keep yourself occupied, as i cant get my head around complicated things?

    Im so upset because i had to give up my Job, which was a nursery school owner, it was the best thing in the world but just couldnt go on with my condition! So after being busy all the time to doing nothing at all it very hard to cope with as you can imagine!

    Talking to people with the same condition as me will help me to understand that there are other people out there who are in the same position as me!


    Sue ( Lauren's Mum)
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Lauren & Sue

    Welcome to TP. I'm sorry you've had to give up your job Sue, it must be very frustrating.

    I can't really relate to your problem, I care for my husband who has had AD for 6 years. Hopefully you will get a reply from kenc, who is a sufferer himself, and is wonderfully helpful.

    Regarding your questions, the problem with dressing is very common, and is to do with messages not getting passed from one area of the brain to another. So that although one part of your brain knows that you need to put your knickers on, the message doesn't get to the part that tells your hands to do it.

    There are some very good fact sheets on the Alzheimer's Society web site.

    As for activities, have you been in touch with the local branch of Alzheimer's Society. They will probably have a memory clinic, where you will be able to meet with other people, although you may find most of them are considerably older than you. But they will have lots of information on what is available locally.

    The Princess Royal Trust is also very helpful, and they will also support you Lauren. They're very good with young carers.

    Try to make contacts, and keep in touch with this forum -- it's a valuable support.
  3. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Sue and Lauren,
    My mum was the same age as you Sue, when she was having problems with dressing - she had to think so hard.

    When we were together in the day time, we used to do a bit of cross stitch together - we started a table cloth - don't know where it went to though, because we never did finish it. Mum used to like walking, so she and dad would go out together, or sometimes she would take the dog out round the village on her own. Mum liked gardening and would spend a long time outside, pulling up the weeds. What pastimes have you enjoyed up till now?

    Have you been in touch with the local Alzheimers Society - they may organise some daytime events?

    Sue and Lauren, you are so lucky that you have one another, and that you are working together and being open - that will be your strength.
    My mum was a teacher - she had to retire early too. For a while, with dad's help, she was able to do some tutoring at home (helping those with reading difficulties)-I think that helped her adapt.

    Sue, you are definitely not on your own - there are many people fighting the same daily battles as you. I am so pleased that you have posted on here, as it helps those of us who care for others, understand a little better. Thank you.

    Love Helen
  4. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    #4 KenC, Jan 3, 2007
    Last edited: Jan 3, 2007
    Mum who suffers from AD

    Hi Sue and Lauren,
    This sounds a very sad and difficult time for you both. Although I have DLB I can still do quite a lot for myself, I can understand your mums frustration. This is a horrendous disease and onewhich has many forms and stages, which makes it harder to cope with than anything else apart from cancer. I think it was sumed up to me one day by a man who had lost both legs, who said he was quite happy with life, because he could handle what ever was thrown at him, but anyone with Dementia or Alzheimer's is on their own, and that made him feel very sad.
    We all feel the frustration at not being able to help ourselves at times, and I think finding things we can do and cope with is very hard. I realise that I got medical treatment which worked for me but others were not so lucky, but since then I have been able to read a book and at the same time stand a bit of a chance at remembering what I had read. The problem I find difficult at times is reading on a bad day, I have to read something three or four times, as I do with e-mails and everytime I do it I see something I had missed before, or it has a different meaning. I used to bash off e-mails by the dozen every hour of the day, but now I struggle to do one in an hour if I am lucky. It does not always work, some days are a waste of time but I think we can tell a good time and a bad one. I seem to fluctuate from hour to hour, or day to day. This makes it harder for people who do not have the illness to understand the fact that I have DLB. I am not sure whether there are any day centres around your area which may be able to help, or whether there are people from your local branch who would be willing to come out and talk to your mum every so often. I think talking to people helps them to realise that they are not alone, but these days there are not many people around who would give up their time to talk to others with the illness, which is very sad. Try to remember there are a lot of people like your mum and myself who had to retire around the age of 55 with this illlness, some even earlier, and we all lost our pensions or dignity etc, so we are all in the same boat. There are still many times when we feel desperately sad and lonley even with family around, but I think we can understand that carers like yourself are doing a wonderful job looking after us and making us feel wanted and loved.

    Keep talking to us at TP.
    All the very Best to you both.

  5. Lila13

    Lila13 Registered User

    Feb 24, 2006
    When my mother had difficulty dressing/undressing it was mostly because she was weak with malnutrition/dehydration. During the times when she was eating and drinking better she was able to dress/undress herself and to do the washing-up, if she wanted to.

    Most of the time she didn't want to keep herself occupied, as she was busy living an imaginary life, or reliving her childhood, in her head, listening to music no-one else could hear, or "going for a lovely country walk". When I persuaded her to do things, to go out for real walks, it was generally an interruption to the inner life she wanted to get on with.

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