1. naomi

    naomi Registered User

    Jul 8, 2004
    hi..not been on this website since last year when we placed my mum in a residential home.It was a very hard desicion but she needed 24hr care and now she seems much happier with the company of the staff etc.I needed support then and the website was excellent.mum now is able to walk about,she smiles alot and her quality of life is good at the moment.The staff have really warmed to her and basically her condition is stable.However last time I visted her consultant,she said that they were thinking about taking mum off her tablets,reminyl but because I said I was not happy about that they didnt but said they may consider doing so on the next visit which is tomorrow.mum is so stable and as I said before happy so why change that and woulnt she have side effects from coming off?Has the doctor a right to do that if the family say no.All being well that wont happen but if they want to stop them is there any advice I can have in preperation for that.It has been a terribly sad and emotional few years watching mum deteriorate but finally now she does seem stable and her quality of life has changed..Any advice please.thanks
  2. rummy

    rummy Registered User

    Jul 15, 2005
    Hi Naomi,
    All I can tell you is what my Mom's neurologist told us on the last visit. Infact it was the second neurologist, the first told us the medication had done all it could do and he might take her off. Went to the second one because he is in a better memory clinic with better services. He told us not to take her off because she would drop like a rock and once they go down, they stay down and he can't get them back up. That is a quote.
    Mom is in the early advanced stage and on Aricept and Namenda. I don't know when we will decide to take her off of it but she will have to be totally non functioning before we even think of it. Sometimes I think it is a financial decision more than what is best for the patient and family!
    I'd say, if its not broke, why change it?
    Take care,
  3. naomi

    naomi Registered User

    Jul 8, 2004
    thanks for that.Yes my worry is that mum would worsen so I will see how it goes..It nice to log on after a year and read other peoples views and advice.Thanks again and if there is anyone else who has advice and knowledge it would be welcome.Thanks debbie
  4. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Naomi
    Niceto haer from you again.
    At our last visit to the consultant Peg's score on the memory test had dropped right down
    Our consultant said he would not take her off Aricept because if there is a rapid decline there is no going back
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello Naomi

    Ask why they are even thinking of taking your Mum off a drug that is keeping her so stable and giving her a decent quality of life. This happened when her psychiatrist visited the home without us knowing he was going and the staff alerted us that her medication was going to be changed.

    My Mum sounds like mine was until very recently when her galantamine was stopped over a few weeks. The staff at her home were angry about it as were we, but we were told she had been on the same medication for three years and it was "time for a change."

    Her quality of life and joy in everything is quickly fading away and she is looking like a lost soul more and more often. There is no doubt in my mind that the galantamine was stopped because NICE say so, which is cruel and makes no sense.

    There is no way she will be put back on it now, so all we can do is watch the rapid decline. This makes me angry,sad and totally disgusted at the way she has been treated as a number, a statistic not a loving caring human being who all her life gave her time energy and love to anyone who needed it.

    You must stick to your guns and unless there is a cast iron reason for stopping the drug fight for her right to stay on it.

    Good luck with the visit.

  6. Charly

    Charly Registered User

    Jul 12, 2005
    Your Mum

    Hi Naomi,

    My advice to you is to firstly, speak with the care home manager and discuss your concerns.

    They will more than likely go through your Mum's care plan and notes with you, to see whether anything has been documented which might indicate a need to come off this medication.

    If this is not the case - with the home having no concerns - and if your Mum is still content, I would personally insist that your Mum stays on the medication.

    Unless your Mum is suffering from side effects which make her daily life a misery (which of course - the home will be able to tell you - and would have spoken to you about before now) I see absolutely no reason why the consultant should be able to make this decision against your will.

    Good Luck!! :)
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Good idea Charly, that would certainly be my first move to see why the need/not for change. If the home also felt the pills were helping they could back you Naomi. If they felt that there was already a decline and the pills were no longer helping, then at least you would know the reason for it. Hope you soon get the answers you need, it's the not knowing thats the worst some times. Love She. XX

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