1. connie

    connie Registered User

    Mar 7, 2004
    Hi all, well I am back from my weeks holiday in Malta.......very nice.........but..
    came home to messages from his care home.

    Basic update.l...........care home concerned about Lionel's mobility problems......Duty doc. at CH wants to reduce his AL medication, and his consultant has said "I need to make the decision - DO I KEEP HIM ON THE MEDICATATION,OR DO I TAKE HIM OFF AND TRY TO HELP HIS MOBILITY"

    This is really a hard one...........have spoken long and hard to my two sones tonight...........and I was so touched when my John saID "TRIED TO THINK WHAT i WOULD HAVE SAID IF THIS WAS dad, BUT MY ANSWER WOULD STILL BE THE SAME

    short upshot is " do I take himer off his mediacation to improve his mobility?"

    "I feel like saying, and to use dear Lioneld's phrase "Answers's on a postcard please"..........................but onle I can make this decision........thank you for listening. love
  2. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    HI CONNIE. welcome back to reality,what makes them think the medication is the cause of lionals mobility problems , in my experience, JIMS mobility deteriorated rapidly ,once off aricept , picked up a little when back on after 2 weeks absence, then once again completly disintegrated, when taken of meds again , i think you can only try a small trial period of the meds , good luck whatever you decide. ANGELA.X.
  3. connie

    connie Registered User

    Mar 7, 2004
    Angela, thank you so much for posting, Know how hard it is for you.......

    If the upshot is that they "muck about with his medication".....then I would rahter they do it whilst he is in respite.........I well remember what we both went through earlier in the year.

    Trust you are looking after yourself,
  4. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Connie,

    Glad you had a nice break. I can only ask the same as Angela - why are they saying the medication is a problem? Is it a known side effect or, (here is my suspicous mind!) just an excuse to take it away? Dad went rapidly downhill when his AD meds were stopped and one of the most obvious changes was his impaired mobility. I suppose it might have been due to other medication that they gave in its place but it seemed too much of a concidence.

    A tough decision for you, will the doctor put Lionel back on again if you/they notice a negative change in other areas and no improvement in his mobility? I hope others can give you some good advice.
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Connie, Glad you had a good break, but sorry you came home to more angst.

    If Lionel`s mobility worsens, it will affect his circulation even more. It`s important he has as much mobility as possible.

    If you can be assured he will be put back on the medication, if it`s not shown to be the cause of reduced mobility, I`d be tempted to give it a trial. He needs to be in respite while this trial is going on, as he needs to be under 24 hour observation.

    Hope things improve and you get a `good`outcome.

    Love Sylvia
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Connie, while there are obviously things going on here that I don't know about (circulation problems?) my first thought would be is the increased mobility worth the decreased comprehension? On the face of it, I wouldn't think so.

  7. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Connie, welcome back, we missed you. Glad you had a good holiday though.

    I don't know the answer to your problem, but like the others, I'd make sure Lionel could go back on his medication if he deteriorates. In this political climate, it needs to be spelled out.

    I'm sure you're right, though, if they're going to muck about with his meds, it's better while he's in respite.

    Good luck,

  8. Lynne

    Lynne Registered User

    Jun 3, 2005
    ... and get it in writing if possible! Cynical? Suspicious? What, me?? You betcha!!!

    Forgive the analogy, but wouldn't a more MOBILE Lionel, but with less control and/or spatial awareness (assuming that would be the effect of withdrawing AD drugs) be like the proverbial 'bull in a china shop?'

    What an awful decision to be faced with. Whatever you do or don't do, the guilt monster gets to have a field day in the end.

  9. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    I am confused with this one - surely immobility can be part of the downward path of Alz. I did not think that medication could cause the immobility or in fact taking someone off medication would improve mobility. I am especially interested in this as David is hardly walking now and all the medics think it is due to 'his condition' - so I am wondering whether we should be looking at something like Ebixa to help him.

    What a decision to make!! I hate it when a Consultant leaves you with the problem - surely they know what treatment is best for Lionel and should jointly make the decision with you with full explanations etc.

    I hope more postcards are received. Let us know how things go.
    Best wishes Beckyjan
  10. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Connie,

    Can I just ask what specific medication(s) is the consultant talking about here? I believe that some of the medications designed to treat side effects of AD (like anti-psychotics used to treat hallucinations) can have consequences for mobility, but don't ever remember reading about mobility issues related to drugs like Aricept.

    Has the consultant said explicitly why he thinks this change in medication will improve Lionel's mobility? For such a big decision, he should be willing to try and explain what he thinks would be responsible for an improvement.

    Take care,

  11. connie

    connie Registered User

    Mar 7, 2004
    Hello again,

    Just to answersome of your queries, Lionel's medication is rivastigmine (Exelon).
    He has been on the highest dose of this for 5 years. About 3 years ago his consultant went into possible side effects (ie, parkinson like symptons), but decided the drug was working well on Lionel's cognitive senses.

    He has been in the care home now for two weeks, and the doctor there (who was called in because of his falling, and inability to even hold a toothbrush some mornings) has liased with Lionel's CPN, and his consultant, and decided that (if I agree) they will gradually wean Lionel off said medication, in order to improve mobility.

    Catch 22 really. I cannot look after Lionel at home any more as he is...........but he is aware of being in the Care home, and tells visitors that he is there because he has been 'naughty' and his carers cannot look after him at home any more.

    So, do I struggle to keep his mind alert, with the result that he will become bed bound, and where I can no longer care for him. He hates the fact that he cannot move unaided, and is so aware of it.

    I think I have made up my mind what to do............and then the doubts creep in.
    I have to try to make the right decision for my Lionel, he is the important one in all this. Thanks for thinking of me.
  12. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland

    Just to say I'm thinking of you. It's a terrible decision to have to make. I know the time is not too far off when I'll have to make similar decisions for John, and I dread it.

    Poor Lionel, too, it must be awful to feel that he is being punished. Could you leave the decision a bit longer, to see if he settles in the care home?

    We're all anxious for you. Let us know how you get on.

  13. janew

    janew Registered User

    Mar 28, 2005
    Dear Connie,

    I am sorry to hear your news and as you say it is Catch 22. My mum is on riverstigmine and like Lionel has had the shakes on a couple of occasions but it has only lasted for a day.

    My mum is having to come off the medication shortly as, due to the guidlines my mum scorred 7 in the mini-memory test and the guidline is 12 - so we will just have to see how this goes. The home seem to think she will take a slide but all I can do is take a day at a time.

    Mum still lives with me and she has been on some medication to try and keep her calm and at the moment it seems to have helped her - thank goodness and I seem to be coping a lot better as she is sleeping at night better.

    Best wishes to you and Lionel and I hope you are enjoying your break.
  14. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Dear Connie
    thinking about you and wishing I could advise but I cannot,you can only do what you think is best.
    We are still getting worse regarding walking,Peg now takes tiny little steps,and the stairs are becoming a problem.
    I am always "on duty" at toilet times now when the carers are not here.
    Life in general is getting harder and I worry about the decisions that I will need to make in the not too distant future.
    May things improve a little for you soon Connie
  15. Sandy

    Sandy Registered User

    Mar 23, 2005
    Dear Connie,

    I wish I had some constuctive advice to make this choice easier.

    There are only two questions that I could think of that might be worth raising with the consultant.

    1. Side effects of medication can be proportional to the dosage level. It is also recommended that people be taken off rivastigmine (Exelon).in stages, gradually reducing the dosage. Would he expect to see an improvement in Lionel's mobility (assuming Exelon is responsible for the some of the problems in the first place) as the dosage was reduced? In other words, is it possible that a lower dose might still have a beneficial effect against the AD whilst reducing problems with mobility?

    2. If Exelon has to be withdrawn due to mobility problems, would the consultant consider trying Lionel on memantine (Ebixa) which is the only drug licensed in the UK for moderate to severe dementia and works on a different chemical pathway than Exelon and Aricept. NICE's advice was that memantine only be used in future as part of clinical trials - but it never hurts to ask and it would be helpful to see what he says about any potential benefits.

    Even though it's a difficult process, I'm sure you'll make the 'right' decsion - but sometimes there really does not feel like there is a 'right' answer, just an impossible balancing act that has to be attempted.

    Do you think that you could frame this question in such a way as to get Lionel's input directly? Is he at a stage where he could understand the risk of his memory getting worse but his mobility getting better?

    Take care,

  16. catm

    catm Registered User

    Jun 13, 2006
    Sorry to hear about Lionel's decease in mobility. I know it's really hard to deal with, and have had to deal with that one myself recently. Whichever way you choose you probably feel like you lose, so balancing mobility needs against cognitive ones is a hard choice. My mom's condition is slightly different to Lionel's in that I haven't had to make the choice you need to, but she has rapidly declined over two months to the extent that she is bed bound and has recently had to have a peg feeding tube fitted. I'm due to have the training on how to use the feeding pump etc. on Friday before she is released from the hospital next Wednesday and have a scanbed (Electric hospital type bed), hoist and pressure mattress downstairs in my old dining room (Now mom's bedroom) to make sure she can stay at home. Social services arranged all the equipment on loan from the NHS, and because mom needs to be fed by tube we've just been granted continuing care funding (After I spoke to PALS and asked for the decision to be reviewed after we were turned down first time!) A lot depends on whether you have the room and ability to cope having Lionel at home if you continue his meds with his mobility decreasing, but I'd speak to the consultant again about changing the meds and definitely ask about Ebixa. It made a difference to my mom for a long time. I wish you the best, and don't be afraid to ask for special equipment, manual handling assessment, occupational therapy, physiotherapy and anything else that may help. I had to insist and get tough, but it was worth the trouble.

    God bless, and I hope things get a bit easier for you.


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