Ideas and Suggestions

Discussion in 'ARCHIVE FORUM: Support discussions' started by Maria, Jun 18, 2003.

  1. Maria

    Maria Registered User

    Jun 11, 2003
    Hi, my mum has been diagnosed with AD she is now 64yrs old. A real lady, never smoked, drank alcholol and worked hard all of her life. She is now at the stage of moderate/extreme AD and has been prescribed Aricept for 18mths @ 10mg, in addition to this she is also has what we call calming tablets together with sleeping aids (Tamazipan). She is cared for 24/7 by my Dad with the support of my sisters and myself. She does not have the ability to relax as her concentration level is really low and she wants constant attention which makes it hard at times for us all. The thing that I find the hardest after getting over the initial shock of this cruel disease is the not knowing how she is feeling one example is today where she had a small fit she told me she had had a lovely day! which is nice because in her world she has not suffered any pain however when she is in pain for whatever reason we are aware due to the agitation that she shows but unaware of what is wrong because she cannot explain this. Her only answer is that she needs the toilet which happens 20 times a day she seems to have a fixation with the toilet - we are fine with this because she still has both her bladder and bowel control. I was wondering if anyone else has experience of this non text book style AD.
  2. Meldrew

    Meldrew Registered User

    Apr 28, 2003
    Hello Maria - sorry to learn about your mum. There are a number of things you might like to try to help her to relax. These include playing suitable music or 'sounds' - I'm thinking of what I call the 'hippy-type' sound tapes (whale songs, seashore sounds, etc.) it's a bit of a long shot but has been known to work (some public libraries have them or I'm sure you can find suppliers on the internet) There's a whole host of other 'alternative' type things worth trying too: aromatherapy, light therapy, etc. but be careful and take advice from qualified practitioners. Even having something to do, which to us can seem tedious, such as rolling wool or something else to 'fiddle' with, especially if it has unusual/ comforting texture, can help someone relax.

    The 'but I've had a lovely day' scenario is one with which many of us will identify and such responses can at times be difficult or frustrating or upsetting or even amusing. I'm a subscriber to the 'there is no text book Alzheimer's disease' school of thought - individuals seem to experience it in different ways and at different times or stages - apart from some common symptoms of memory loss and confusion.

    I agree it's hard when you cannot understand how someone actually feels but you do get to learn the signals of agitation when they're experiencing discomfort. What's happened is that your mum has lost the ability to express her discomfort in the way that she used to and so she now gives different signals that you/ we/ the rest of the world - need to learn and interpret. I'd suggest cherishing those moments when someone announces they're happy or have had a good day - even if you haven't or feel that they haven't. Sometimes the reverse can happen, even when you know very well it has been good - it can be hard but a reminder it's this wretched illness and not your mum can help (I also go outside and shout at the pigeons but then my neighbours think I'm a bit odd anyway)

    The '20 visits a day to the loo' again is not that uncommon - even if she doesn't actually need to go. There is a whole raft of possible explanations varying from seeking a feeling of safety or privacy (it's sometimes the only place you can be guaranteed any privacy) to her thinking she needs the toilet because of confused messages receievd by her brain - might be worth checking with her doctor in case she has developed some urinary tract infection.

    Hope that this is of some help.
  3. Maria

    Maria Registered User

    Jun 11, 2003
    Thanks Meldrew

    I really appreciate your suggestions, both mum and dad enjoy the radio and it is always on in the background at home, we have found that she enjoys jigsaws (pinochio is her favourite) expecially the 50 piece disney ones it is lovely to have the interaction she also enjoys snakes and ladders this is what we use to utilise the time. In addition to this she really enjoys being out in the car driving around as you can imagine we have done endless miles.

    Recently we have as a family been on a cruise, I dont think it was to the liking of some on board due to the stigma that surrounds this type of holiday, however it is a free country we had many people come up to us individually and talk about how lovely it was it was see us all together their thoughts were nice not being sarcastic, some however chose to stare at what looked like belief I would hate to imagine how they would cope due to what seemed like ignorance. Our moto is life goes on, we all enjoyed our time together and laughed, cried and took each day as a new one. Mum speaks to us and says "I loved my cruise" so we shall be booking another.

    I will seek the music you have suggested it is nice to share ideas with one another.

    Thankyou again.
  4. Charlie

    Charlie Registered User

    Apr 1, 2003
    #4 Charlie, Jun 19, 2003
    Last edited: Mar 31, 2005
    Hi Maria/Meldrew,

    reading you posts tonight made me feel some comfort. My mother asked me to help out as my dad was getting very fidgety recently.

    She asked me to buy some videos as he has been enjoying watching shows from the past. He find these a lot easier to watch as they are familiar and the plots not to contrived. So this weekend I have Faulty Towers Set, Dads Army and the Blue Line to keep my dad smiling. It will be great watching these with dad as he still has a deep rooted sense of humour. It all about keeping a little quality in his life that keeps alf us going.

    And I think Meldrew is absolutely correct, it effects people in different ways. Your mothers repetitive trips to the loo are not unusual. Dad is becoming more repetitive and often talks to himself now, it really is hard to fathom what he is thinking and how he is coping, but he seems to have filtered out any recognition of alzheimers. I guess it is his way of dealing with it and this is one illness that goes beyond the realms of general practisioners advice. For example, my own GP advised me to tell my dad everything, but luckily we have avoided this and it works for him, not knowing, is not having to deal with it and why should he when it would in his particular case cause a lot of stress and confussion.

    thanks for talking

    Kind Regards

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