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Why won't family listen~

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    #1

    Why won't family listen~

    The past few months Ive been trying to tell my dh and my kids (who are all adults now) what I want if anything should happen to me, or what I want as far as types of dmd's I'm willing to take. My dh constantly turns it into a fight, while the kids keep telling me "ma, don't talk like that".

    I've had MS for 20yrs now and I think Im perfectly capable and well informed enough to know what I want. It's my body, this disease is ravaging my body, I should be able to say what I want. Why then, is everyone telling me I'm doing it all wrong, or if I don't take this med or that med that I'm not taking proper care of myself, etc.

    I don't mean to sound selfish or anything, but REALLY? I'm not allowed to know or express what I want? My memory may be fading slowly, but I'm still here and alert.

    Guess this must be a vent, or just frustration, I dont know anymore. I sometimes think I should just write down what I want and get it notorized and hand it to all of them and hope they will follow it.
    Tags: None
    #2
    good Idea

    That's a good idea!
    At least you can get it off your mind and go on with things.
    techie
    Another pirated saying:
    Half of life is if.
    When today is bad, tomorrow is generally a better day.
    Dogs Rule!

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      #3
      I hear you Pjs. When I try to talk to my wife about how I feel or about new things that may be going on all I get is, and I quote, "Hmm". No converstaion at all. So I just quit talking about it to her and I come here. I know our family cannot relate to what we are going through but they could at least show some caring and compassion by listening and asking questions. I truly don't believe my DW has done much if any research about MS. MS can be a very lonely disease.
      Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

      It's hard to beat a person that never gives up.
      Babe Ruth

      Comment

        #4
        My ex husband use to tell me, and I quote "you want MS cuz you just want to be sick!" Like, who WANTS to have this!! My dh has done research either. He read a book on it once while I was getting a solumedrol dose at the doc office, but thats all he's read.

        I mean I know he cares and all but he is just refusing to hear what I want. Maybe if he would really read up on MS or at least ask the doc questions at my appointments, maybe that would help.

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          #5
          Putting it in writing is a good idea. Both my dh and I have Power of Attorney's for both of us, for personal care and for property/finances so nobody has to make that kind of a decision if/when the time comes... I'm 46 and he's 50 so hopefully we won't need to use them any time soon! Sometimes they are called "Living Wills".

          Jen
          RRMS 2005, Copaxone since 2007
          "I hope to be the person my dog thinks I am."

          Comment

            #6
            Originally posted by pjsSissy70 View Post
            The past few months Ive been trying to tell my dh and my kids (who are all adults now) what I want if anything should happen to me, or what I want as far as types of dmd's I'm willing to take. My dh constantly turns it into a fight, while the kids keep telling me "ma, don't talk like that".
            Sissy--As harsh as this might sound...they don't want to listen, nor do they have too. And it isn't because they don't like you, it is because they love you.

            I just spent the last two weeks with my aging parents (Im 48, they are 79 and 80), and they last day there they wanted to go over their will, funeral/burial stuff, financials, and health matters. To me I was like, "Oh curses....how morbid."

            Needless to say, I did it, but was an UNWILLING participant. And I came home with a copy binder of everything. I did not want to talk about my parents dying...it is something I don't want to deal with until the time comes.

            In actuality, like Cat Mom has already alluded too...their preparation has taken the burden of any decisions off my shoulders. Which I am grateful for.

            At a mimimum, you need a Will, a power of attorney, and a living will. You can do this all on line fairly easily. Put it all in a folder and tell everyone where the folder is at so they can access it. No discussion needed.

            I actually did this myself a few years back and the necessary parties know where to find the paperwork, I just did not discuss the details. I just want my wishes followed as do my parents.

            So like everyone has basically said, don't talk about it, put it in writing and review it every one and awhile to make sure everything still meets your needs.

            Good Luck to You--Katie

            Comment

              #7
              Katie pretty much hit the nail on the head, none the less, i hope the best for you, and katie im sorry to hear about having to go through that. im sure that isnt easy. Good luck to both of you

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