One step forward ... two steps back?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lucille, Nov 18, 2005.

  1. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    I posted on here a while back for advice on what to do about my mum so thanks to all who replied. I recently visited the doctor with her (we'd been previously and he'd recommended various blood tests), these came back negative. Told him mum was still forgetting things, repeating, odd habits of compulsive buying, food, clothes. He didn't seem too bothered. When we went again he told her she'd had too many birthdays ... she's just 74! I mentioned Aricept, he said he wasn't convinced of its merits. I then asked if I could have a formal assessment done for mum. He is arranging this. At no time was I offered any advice on support, how the disease progresses, or anything. He knows mum lives alone and that I am travelling over 150 miles to take her to a docs appointment. Back up provision is rubbish! The doc confirmed to mum she's probably got mild dementia. She is understandably heartbroken. There was no counselling offered, yet if it was someone my age (43), and I'd been diagnosed with an horrendous disease, presumably there would be. I guess after the assessment, the doctor will do nothing until I pursue it. He made some remark to mum about me leaving no stone unturned in my 'quest' but it's hardly surprising is it? It's a sad fact of our society that people don't care about the elderly, despite the fact that one day they too will be old. Thanks for listening, any tips gratefully received!
     
  2. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Natalie,

    I find it difficult to know who to blame in these situations. You mention society not caring about the elderly, no denying that, but I can't help thinking it seems to be down to individual doctors. I realise that doctors aren't infallible, yet some are able to offer advise and support, while others don't seem to, apart from offering a witty dismissive comment.

    It does seem incredible that whatever 'procedures' are meant to be followed, there is no inclusion of help available to anyone coming to their surgeries with problems of this type. Even when blood tests are negative - there's still the behaviours that need to be dealt with in some way. It must be difficult being so far away too and still not knowing exactly what you're up against.

    Have you tried ringing the Helpline to see if they can offer any tips?

    http://www.alzheimers.org.uk/About_our_work/Contact_us/helpline.htm
     
  3. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    Dear Natalie

    It's terrible isn't it that we're supposed to just accept that our parent has dementia/AD and leave it at that. If only it were that simple.

    When I visit Mum (who's in an EMI dementia unit) of an evening, quite often one of the residents who has already been put to bed and on hearing me in the corridor he shouts for HELP. I always tell the Carers and their response is always the same: Oh he does that all the time!

    The fact is that he probably does do it alot, but they should not just accept it and ignore it. They are paid to care for him not ignore him. He deserves for them to attend to him. He never has any background music or tv or anything to keep him company and he's totally unable to get out of bed or probably even to sit up in bed on his own. But short of telling the staff what I've heard, what do I do, NOTHING! But I do feel bad about it.

    Why do I do nothing more - because I'm constantly treading carefully and trying to keep all of the staff on Mum's side!

    I've waffled - but I do understand where you're coming from and can only suggest that you follow your heart and continue to support your Mum - don't worry too much about treading on toes - but don't wear Doc Martens!

    The AD help line is very very helpful - they'll listen and help if they possibly can.

    Depending upon how bad your Mum's memory is, I guess you should be thinking about safety measures (is she likely to leave the gas on, or the tap running - if so there are ways of sorting this: get the cooker disconnected and leave the microwave (+ meals delivered daily - they can be very nice from certain companies); get the press type taps so that they cannot be left running. Perhaps get Carers in once or twice a week or as necessary just to make sure that she's okay. It's really important that if she is on any medication that she's not forgetting to take this regularly - perhaps get any medication dispensed in the trays with days/times etc so that she just pops out the right ones at the right time - you'll then be able to look & see how she's doing when you visit.

    Does she keep busy and have friends close by. This can make all the difference.

    My overall advice would be to do everything humanly possible to keep her in her own home - as there's no going back.

    With the right help & support it needn't be so bad - so chin up!

    Very best wishes.

    Ellie
     
  4. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    When my Dad died, and we found Mum worse than we'd imagined, I contacted her GP asking if he would see both of us. Very reluctantly, he agreed to doing this. The surgery wouldn't allow me to make an appointment in advance, only by phoning that very morning on which we wanted to be seen. We lived 100 miles away, but that made no difference. When we did see the GP, he ignored me totally, not even a 'hello', and I shall never forget it. He did all the right things, referring her etc, but there was never any concern there at all. I wonder, would he wished to have been treated in this manner? Mum now has a new GP who seems far more approachable, and my own GP is absolutely wonderful ...

    Good luck with the assessment, Natalie. Hope you get some help soon. I found the initial assessment process very smooth, and they were kind to Mum.
     
  5. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    One Step Forward, Two Steps Back

    Thanks for your replies. Just wanted to let off steam! It's very stressful and at times I feel like I'm wading in treacle. I will make further enquries as to what else I can do for mum. It's all made worse by the distance between us. Also, because at the moment she can still do things for herself (most of the time), I don't want to look as if I'm taking over... until I have to. Am angry that this has happened to her; she said to me the other day her worry had always been that she would lose her "dancing legs". How poignant then that she'll forget how to dance altogether.
    Will visit here again soon, thank you so much for the advice.
     
  6. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Re Dancing Legs

    Natalie

    Don't be too despondent about your Mum, you are doing all you can for her, be proud of yourself for that.

    As for your Mum losing her dancing legs, my own Mum has forgotten people, places and how to do the simplest everyday task, she is even having trouble communicating and eating solid food.

    However, put any music on and she is dancing away, that seems very common in her home amongst even the most confused, even if they can no longer walk, they still tap feet or sway along to the music.

    Kathleen
    xx
     
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Natalie, you've done the right thing by asking for a formal assessment. Once you have that, you can ask for some help and hopefully counselling. Your local Alzheimers branch would probably also be able to give you some support too. Even if your Mum is 150 miles away, the group near to you and the group where she lives could both be of help. Love She. XX
     
  8. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Natalie
    I wonder on what evidence the good Dr based his statement?

    quote from Natalie
    I mentioned Aricept, he said he wasn't convinced of its merits.
    Norman
     

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