Where to go from here

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lesarc, Mar 28, 2007.

  1. Lesarc

    Lesarc Registered User

    Mar 21, 2007
    2
    We have just received the official diagnose that my mother has alzheimers, we knew that she had some form of dementia but it has taken a couple of days to sink in, where do we go from here! We have been informed that there are four drugs to try and they will most probably start with Aricept but before they can we have to have her heart tested this has been arranged for Friday and then we must have a "CPN" to visit her at home to monitor this, why! Does this drug damage the heart? What can I expect. I know so very little but have been reading and researching as much as I can - but it is so much to take in. My mother scored 23 this week and last month she scored 19, she appears to be changing in front of my eyes. I am desperate for her to start taking the medication so that we can slow down the process but everything seems to take so long. We have not told her she has alzheimers, she knows she has "memory problems" but I am not sure if I should tell her. I have so many questions and am just looking for anyone else's input, is she early stages or not! What can I expect over the next few months!
     
  2. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I've moved your thread here from the tea room as I think you will get more replies here.

    I'm running late for work (as always!) so unfortunately haven't got time to give you a 'proper' reply, but I am sure you will get lots of answers during the course of the day.

    Just wanted you to know you are not alone.

    Take care
    Brenda
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Lesarc,
    The memory test result this month was in fact better than last months as I understand it - so just shows how limited value they are!

    I have no knowledge of the drugs - not a line that we were ever offered for my mum - have you had a look at some of the helpsheets (top left corner of screen).

    The drugs can slow down the progress of the illness considerably - so it is important that the tests are done as soon as possible. I think that there are different levels of doseage, so the CPN will monitor how mum is responding.

    There are different views on whether to tell or not - my mum only ever understood that she was having problems with her memory. Some people, I understand, are actually relieved to be able to give a name to their memory problem. You and your family know your mum best - try and respond to her need to know, or not.

    So pleased that you have found us.
    TP contains both a wealth of information and support - use it.
    Take care, and let us know how things go on Friday.
    Love Helen
     
  4. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Lesarc

    As Helen has already said, the memory test score this time, was better than last, so you must make up your own mind on their worth! They really are only a snap shot in time.

    I don’t recall my mum having any ‘tests’ before being prescribed Aricept, could it be that they are taking the opportunity of giving your mum a good MOT!

    With regard telling your mum about the diagnosis, only you can know if this knowledge will be of benefit to her, some people I know are relieved to know there is a reason for their symptoms, and take comfort from the ‘label’. With my own mother, ‘nothing wrong with her memory’, so no value in telling her, it would only have added to her distress, so she has never been told.

    It’s an awful lot to take in on the knowledge front, so take your time, and be kind to yourself too; it’s a hard diagnosis for the family to get to grips with.

    Just remember TP is here to help and support you in whatever way possible.

    Best wishes

    Cate
     
  5. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    They probably want to make sure that your Mum doesn't have an existing heart condition before prescribing a new, and quite powerful, drug for her. As far as I know, there are not specific heart issues with Aricept, so it is probably the usual thing - that drugs should be used with caution for people (espescially the elderly) who have existing problems with heart/lungs/liver/kidneys etc. The heart check is, if you like, an MOT test!

    The regular visit by the CPN are more likely to monitor your Mum's initial reaction to Aricept, that is because a few people get quite nasty side-effects from them like sickness, diarrhea etc. I should stress that not everyone does!

    They will probably want to re-check the test scores after a month or so, to see if the drug has been of any benefit. Some people do well, some don't.

    The four drugs are likely Aricept, Exelon and Reminyl. These all work in about the same way but if you react badly to one then you can try another. Aricept it seems is the common first choice because it is least likely to cause side-effects. The fourth might be Exelon, but this is a different sort of drug, and is for people in the late stages and I believe is not prescribed on the NHS anymore.

    Yes the test scores can vary quite a lot, people have good days and bad days.

    None of the drugs slow the progress of the disease but they can help in reducing the symptoms of it. They are not a cure. But they can help slow down the progression of the symptoms.

    Its purely a personal thing as to how much you tell someone. Dad knows he has AD, but also believes that this is just "memory problems". Sadly he thinks that he will get better, we have not told him otherwise.

    some people recognise they are declining, others do not.

    A "CPN" is a Community Psychiatric Nurse. He or she will specialise in people who have mental health issues but who still live at home.

    You may, or may not, receive visits from a specialist Memory Nurse (which is what we have). Such nurses are like CPN's, but specialise even further in people with dementia.
     
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Not to be picky Nebiroth, but isn't that only three? :D

    Jennifer
     
  7. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Lesarc ..... first of all congratulations on recognising that! That's the first step in being kind to yourself! Next, for finding TP ... no predictions other than you have found exactly the right place for all the information and support you will need to help you through .....

    Keep asking the questions - there will always be someone along to try to help!

    Love, Karen
     
  8. Conrad

    Conrad Registered User

    Jan 15, 2007
    16
    My aunt is on aricept - she was very resistant at first - she does not (either then or now) recognise that she has any problems at all -
    at first she was resistant to taking the pills as, unless taken with food, they can cause stoach upset, and she couldn't remember/ or / and just wouldn't eat at the same time

    Her carers seem to be manging to get her to take the pills regularly now

    I think there's a perceptible difference because of the aricept - although - she was put on anti-depressants at the same time and I know they have made a huge difference - much less crying and despair

    good luck
     
  9. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    Bah I wrote Exelon twice, didn't I! I meant Ebixa!
     
  10. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Mum had the works before she got her Aricept. Brain scan, heart test, two lots of blood tests. I was told it was just to do an MOT and make sure there were no other problems. The CPN came round to see mum in her own house just to make sure everything was OK.

    If you have not done it already make sure you have Power of Attorney so you can look after the financial things.
     
  11. Lesarc

    Lesarc Registered User

    Mar 21, 2007
    2
    Thanks to all your input has been most helpful. I will continue to monitor TP. Can anyone tell me if "Enduring Power of Attorney" EPA is the same as "Continuing Power of Attorney" my lawyer infoms me that there is no difference! We are awaiting the CPA and have been informed that this the only thing we will need to look after mum finances.

    Lesarc:)
     
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Lesarc: I assume you're in Scotland? If so, yes that's the equivalent to an english/welsh EPA. Assuming you're in Scotland, have you considered getting a welfare power of attorney as well?
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Lesarc

    Yes, the Continuing Power of Attorney is the Scottish equivalent. Didn't your solicitor mention the Welfare POA? Ours drew them up at the same time, I don't think it cost any more.

    It's worth having, it gives you control over medication, nursing homes, palliative care, etc.
     

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