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To medicate or not to medicate?

Discussion in 'ARCHIVE FORUM: Support discussions' started by gigi, Nov 22, 2007.

  1. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    :confused: Just returned from our quarterly visit to see the consultant. Eric(my husband)has again passed the MMSE with flying colours-in spite of asking me on the way in what day it was! He has been on an increasing dose of Reminyl for over a year now and from a memory point of view(or as decided by the MMSE) he is stable. Consultant is happy-his drugs are working! Eric is not-he thought the whole point of retaining his memory was so he could drive again. Is now on max dose and it's suggested he stays on that dose "as long as necessary". Eric no longer wants to take the tablets. If he can't drive and be independent he thinks "what's the point?" I've tried everything to persuade him and make him see reason thisafternoon but he's closed down from me now and is watching tv again. There seems to be no way in to his mind-he wants to be what he was and that's that. In many ways I'm tempted to stop giving the drugs and let nature take its course. He is miserable and his whole aim in life(18 months after diagnosis) is still to be able to drive. I think he's going through torture inside and it seems cruel. Are the drugs helping him to remember too much? What a quandary!!!!
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Gigi, while I don't have any experience with the drug issue, I think you have to think about what other deficeits might present if the medication was stopped. Yes, he's driving you crazy with the driving issue, but is that better than the alternative? I don't know what the alternative might be, but examples from the board are such things as: constantly following you about, becoming agressive, wanting to "go home", cinfusion about time and space, wandering... the list goes on. I'm just wondering if the "devil you know" might be apposite. None of these might happen if you stopped the meds, all of them might.
     
  3. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Gigi,

    Not a nice situation to be in. It must be frustrating for both of you. I too cannot offer an insight into the drug/dosage etc. Did the consultant give you any indication of what may happen if the medication were to stop. My guess would be that you need to be careful even if reducing a dosage never mind stopping it all together. I'd be tempted to call the consultant before making any rash changes. Perhaps you could discuss a trial period and the risk involved in taking eric off the medication for a trial period. After all, it is you who are going to get the brunt of it if the medication is changed, so you need to know what to look out for. Also find out if there are any risk associated with changing the medication regime.

    Kind Regards
    Craig
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Gigi, my husband John is on Reminyl, and it has made a huge difference to him. For six years his decline was very slow.

    I suspect he'll be taken off it next week, when his consultant visits him, but I don't think it will make much difference now. I'm very grateful for the years he had on it.

    Regarding the driving, how do you feel about that? After John had been on Reminyl for about six months, we applied, with the consultant's approval, to have his licence restored. But only you know if you would be happy with him driving.

    I certainly wouldn't advise stopping the drug without approval and supervision. As Jennifer says, all sorts of other symptoms may develop.
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I would phone doctor for advice or see if you can talk to consultant , before stopping medication .

    I only say this because my doctor told me that if mum stop her AZ medication it would be inhuman .
    may be if you think about it in a different way , his not thinking with a logic mind, about medication and yes he never going to see reason just one of the symptoms of AZ not seeing that taking medication make the journey in to AZ more balance out my mother had a stage she did not want to take her diabetic medication or AZ medication , but then you cant force him to take medication as he has a choice to take it or not , that why I say take to doctor , consultant because of symptoms are going to get worse because of the drop he take , Doctor can advice you better in the side effect of coming of medication
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Dear Gigi,

    When my husband refused to take his anti-depressants and diabetic drugs, because they `weren`t working` I told him he might be even worse without them. He agreed to take them.

    Unfortunately, this did not apply to Reminyl as it disagreed with him, as did Aricept.
     
  7. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    I am very much aware of the downside of Eric not taking his medication. I know ultimately what I will be faced with. Is it not better to face that now while I am young and strong enough to help him through it? Also it is breaking my heart to watch him struggling to be the man he was-it's a pointless struggle for him. I know some of you won't agree with that but I know Eric. I first met him 15 years ago after his first wife died and we've been together since then-we married 5 years ago. He was struggling to face reality when I met him. But he was a sociable,intelligent and talented human being-also very much an egoist!!!! All I can give him is my love and reassurance but it is wearing me down because I can't find a way through this. He calls me "she" to other people(like the doctor today) OK-I understand that-but why keep him here with drugs when we have to eventually bow to the inevitable? I need to face what is to come at some point- will obviously discuss with consultant before making a decision-he gave me the nod before we left today. Keep you posted-thanks for your input x
     
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london


    It must be a hard decision, but like you say know your husband better then any one .


    we not hear to judge each other , just support each other as we are not living in each other shoes .keep posting
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Gigi - no one here will judge you whatever you decide to do.

    We just want to make sure that you've considered all the possible outcomes (well I guess that's why you posted here, no?).

    Best wishes
     
  10. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Oh gigi, I realise how hard this must be for you both.

    Only you know how Eric is in taking the drugs prescribed. Only you know just what the impact of not driving is having on his life. Only you know........

    And so it goes on. No one can tell you the best course to take.
    Maybe by talking about it here on TP, it will give you a better perspective.

    We are not here to judge, just to listen.
    I hope that you both are able to come to some sort of a compromise with this difficult desease. God bless.
     
  11. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    I'm crying as I write this. You are all so supportive and i take on board everything you say. The consultant said to contact him re medication if I needed to and I will. We have had so many visits now to see him and each time Eric builds his hopes up-even though I try to persuade him that he will not get his driving license back-to see that hope knocked back each time and to feel that I can't do any more is defeating me. I'm so tired-if I could only talk sensibly with him and get through to him-believe me I've tried and end up feeling a failure. I deal with what I am faced with-it's not easy.How long does Eric have to stay in this limbo? He is unhappy and I can't fix that. That is why I question the benefit of his medication-or is there something else I can do I'm not doing?
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Dear Gigi,
    I`m sure I`m not alone in understanding what you mean about the drugs.
    They never agreed with my husband and it didn`t really upset me, as they were never going to be a cure, they were just to prolong his life and take the inevitable further away.
    If they had had a positive effect on him, I`m sure I would have given them to him, it wouldn`t have been for me to decide, yes or no.
    But I too have considered my age and how much I will be able to do for him in years to come.
    If I had the choice, I would hope to have the strength to keep him at home for the rest of his life.
    But I don`t have the choice and have no idea what the future holds for us.
    So I take one day at a time.
    Take care
    Love xx
     
  13. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    In a nutshell!

    Grannie G-you have said what I think! The tablets are only staving off wht has to be and I want to care for Eric. Knowing that I think I'd sooner deal with it now while I'm young enough than prolong the agony for both of us. If he was happy on the medication I would think differently-but he's not.I'm a qualified nurse and have knowledge of what's to come. We're not an "old married couple"-we're both second time round so it's more complicated as we both have families. Eric's daughters are both in Australia and have passed the buck to me. I love him and want to care for him in the best possible way and at the moment I am seriously considering withdrawal of medication. As you say-one day at a time. Tomorrow's another day and may think differently then. Am going to contact the consultant and chat. thanks for you input-appreciated
     
  14. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Dear Gigi

    Such a difficult decision for you. I just have some more thoughts which may or may not cloud the issue. Some of the things that you say make me wonder if you fully (as in emotionally as well as intellectually) understand that removing the drugs won't effect the overall course of the disease. That is - I expect if the drugs were stopped he'd get worse quicker but he'd stay worse longer. Now you may feel that you could cope with that stage better now, at your current age, but potentially he'll still be at the same stage when you are also older. Now I do remember a thread in recent past, but I haven't been able to find it, from some one who took their mother off the drugs and from being eternally anxious and fretful she had settled into a state of, for want of a better description, happy bemusement. Now I can see that that would be a desirable outcome but I don't think that outcome could necessarily be predicted.

    I "think" in your position I would be inclined to ask the consultant what the likely effects would be of a trial of no medication, and, as importantly, what might happen if you then chose to restart them. I "think" (again) that I have read that you may not be able to put the clock back in that situation.
     
  15. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Jennifer! I suppose I want Eric to be in a state of happy bemusement-that's true. I would like him to be mentally unaware and not worried anymore so that I can care for him in my own little Eutopia. I know this is cloud cuckoo land!! But-I do believe that if he were a stage lower he may not fret so much. as you say-nobody can predict and I need to look into it further.Will keep posting! thanks and god bless x
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    The thing is you cant predict that , if you don' t mind me adding why not read Sylvia thread A day in the life of....

    As Sylvia husband is not on medication for AZ

    then you hit a
    catch 22 , because when see someone with AZ you only seen one , because every one so different ...a horrible disease that you cant predict anyway , also if they have awareness with or without medication till they get into the really late last stages
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Dear Gigi.

    Just to set the record straight, my husband`s decline is very slow and emotionally painful to both of us. I cannot envisage the day when he will ever be in a `state of happy bemusement`.
    It is just not in his nature. I believe he will continue to fight this condition for a long long time.

    Love xx
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #18 Margarita, Nov 22, 2007
    Last edited: Nov 22, 2007
    yes that why I said for gigi to read your thread ,because it does not read like your husband not fretting or is in a state of happy bemusement without medication
    but did not want to say that in case of offending or sounding judgmental ,and that why I added , catch 22 I
    mention above
     
  19. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Thanks for all your input-I needed it! Maybe I'm a bit in denial about this whole thing as well as Eric!Have had a long chat with the CPN thismorning who agrees with the general consensus of opinion- don't stop the medication! I now understand better what the medication is doing and how much worse it could be for both of us if it were to stop! Also that the disease will progress at its own rate in spite of medication- which serves to mask the symptoms for a while. So it's not a case of delaying the inevitable-it's a case of making the best of what we've got while we've got it and that's what we'll do. Eric is still very angry about yesterday and threatening to commit suicide-"life is not worth living if I'll never drive again"- I remind him of the good things we have and try to give him something to look forward to. And try to make him laugh!By the way-his driving had become very erratic-changing lanes without looking or signalling/stopping on roundabouts unsure of the exit/2 minor accidents due to lack of concentration-he was a danger to himself and others.But he remembers himself as a perfect driver who never had an accident....
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Dear Gigi,

    It`s good to hear you`ve been able to get things more in perspective.

    If you browse through posts you will find that giving up driving is one of the biggest hurdles to overcome. Driving and managing finance seem to be the main issues when sufferers fight to retain their independence.

    My husband had a few minor `bumps` but insisted it was because there was no respect on the roads any more. He gave up when he broke his arm and couldn`t drive for 8 weeks. During that time, our son `borrowed` the car and hung on to it.

    My husband is now saving for a new car, still carries his licence in his wallet [although it is his old red fabric covered one] and vows he will have a new car one day. I go along with it.

    So your husband is not on his own believing life ends when you are no longer able to drive.

    Take care

    Love xx
     
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