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    new to Forum - dealing with a wife with MS who told me to leave

    Hi all

    Having a rough time. My wife has MS - uses a power wheelchair and cannot transfer herself at all. I'm her only real caregiver. We recently hired someone for 22 hours a week since I've been having a rough time of dealing with everything. I have not had an outside job in 4 years.

    We just took a trip to Ireland. Our first real vacation in a couple years and the first since we met 6 years ago that didn't involve visiting family. The day we came home from the trip, she had friends tell me I needed to get out of the house and leave her. No explanation. Finally, almost a week later, our marriage counselor found out from her that it's my anger - which is a direct result of my frustration with the whole situation, having a wife with MS, seeing her get worse (6 years from walking with a cane to all but bed-ridden), dealing with the mental limitations of fatigue and so much more as well as the non-stop caregiving.

    Friends don't consider me an angry person and even though they have seen me get angry with my wife, it's not violent and always has to do with something she's doing that's dangerous or illogical.

    And now I'm out on my own. Possibly forever. I'm currently trying to both get on my feet (I have no money of my own since I haven't earned a salary for 4 years) and trying to see if eventually she'll be willing to reconcile and compromise on some issues to reduce my stress and help bring the power dynamics back close to equal.

    I knew she had MS when I met her but there's only so much one human can do in giving up almost their whole life to care for another. I have tried to take respite time, but 8 hours every couple weeks doesn't make a difference. We tried the outside caregiver only for 2 weeks before we went to Ireland.

    Yes, she can't get away from the MS and wishes she didn't have it, but that doesn't mean I should be able to just 'suck it up' and handle the stress. We were in marriage counseling and we're both in individual counselling, all with therapists who understand MS.

    At this point, I don't know if I can do anything to get her back and my therapist is telling me that it may be for the best if I don't. Of course, I'm afraid that her life will be worse without me, but I could be wrong.

    I'm putting a plan together to speak to her in a few days time - mutual friends will hopefully lead the way - to develop a new formate if she's willing to give me one more chance.

    By the way, I'm 44, my wife is 57. She has secondary progressive and continues to get weaker. I am generally healthy but am on an anti-depressant which isn't probably working well enough.

    #2
    Hello Topcatt

    Welcome to the MS World Forums.

    Sorry to learn of your wife's struggle with MS, and your struggle to deal with it.

    The day we came home from the trip, she had friends tell me I needed to get out of the house and leave her. No explanation. Finally, almost a week later, our marriage counselor found out from her that it's my anger - which is a direct result of my frustration with the whole situation, having a wife with MS, seeing her get worse (6 years from walking with a cane to all but bed-ridden), dealing with the mental limitations of fatigue and so much more as well as the non-stop caregiving.

    Friends don't consider me an angry person and even though they have seen me get angry with my wife, it's not violent and always has to do with something she's doing that's dangerous or illogical.
    No advice here. From reading your post, it sounds like your wife doesn't want you there because of your anger.

    And it also sounds like you have a hard time dealing with the situation without getting frustrated or angry.

    I knew she had MS when I met her but there's only so much one human can do in giving up almost their whole life to care for another. I have tried to take respite time, but 8 hours every couple weeks doesn't make a difference. We tried the outside caregiver only for 2 weeks before we went to Ireland.

    Yes, she can't get away from the MS and wishes she didn't have it, but that doesn't mean I should be able to just 'suck it up' and handle the stress. We were in marriage counseling and we're both in individual counselling, all with therapists who understand MS.

    At this point, I don't know if I can do anything to get her back and my therapist is telling me that it may be for the best if I don't. Of course, I'm afraid that her life will be worse without me, but I could be wrong.
    I think that listening to your therapist is a good idea.

    Take care,
    KoKo
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      That sounds like very tough situation, and I can appreciate your position. As a person newly diagnosed, even though I'm still quite able the stress and fear that my wife is going through watching me take this on, is putting a lot of strain on our relationship.

      Just remember she can't help what is happening to her.

      Comment


        #4
        My husband and I are in the same boat. I have SPMS and he quit his job to take care of me. I'm in a power chair for the last 5 yrs. and can't transfer by myself for this last year.

        He came up with a new company to run out of his office down in the family room. Although, I get progressively worse we deal with it. He makes a comfortable living for us and we have my SSDI. We do fine. I spend most of my day doing research with just one finger on each hand and my computer.

        It sounds like you guys need to be straight with each other and find out what the problems truely are. And whether they can be solved and how. Is she financially independent? (With outside help highered for 22 hrs. a week, you not working for 4 yrs., but yet affording a trip to Ireland).

        If you both want to make your relationship work with less stress maybe you could hire fulltime help for her and you could go back to work fulltime to give you money, self esteem and autonomy. Just a thought...I hope you two can find the answers that work for both of you. Take care.
        Lord, keep your arm around my shoulder and your hand over my mouth. Unknown

        Comment


          #5
          new to Forum - dealing with an MS wife who told me to leave

          Wow, I am really sorry to hear of your problem. I tend to agree with the most recent post about full time care giver and you returning to work. I am RR so I am still working and active, but I can imagine how I would feel if I went to requiring a power chair in a short time. I would be very frustrated and emotional. I am already emotional when it comes to the limitations that I do have. I don't know you or your wife, but I think that you admitting that you do get angry is a good thing - you recognize it and therefore it is something that you can work on. Maybe you and your wife could visit a therapist, different from the one that you currently have of course. Even though you are not violent you may be making her feel as if she is a burden when you do get upset, since she knows she can't care for herself. I wish you the best results.

          Comment


            #6
            Hi all

            Thanks for the replies.

            My wife and I are meeting with our marriage counselor this Tuesday. From her actions so far and from what my marriage councelor has said, my wife is ready to call it quits and not try to reconcile.

            The irony is that it took this horrible process for me to finally realize that I am not able to be the only serious caregiver for her. I kept trying and trying other things to alleviate the feelings I had, when all along it seems that focusing on being her husband first and he caregiver second was what we should have done.

            Of course, it looks like this realization happened too late. From what I hear (she doesn't speak directly to me), she's planning on moving up north to be near family. None of her family wants her in their homes, and so she'll have to go to some facility. It really hurts that she's apparently willing to choose a nursing home of a life with me.

            I will have to make a new life for myself after not working for 5 1/2 years and not having much in the way of real skills - I used to work construction by my age and health won't make that easy.

            People have suggesting the ironic idea of training to become a Certified Nurses Assistant so I can take my caregiving skills and make a bit of money.

            Thanks again.

            Comment


              #7
              Hi Topcatt, I hope the meeting with your counselor went well.

              Comment


                #8
                Meeting with counselor went as about expected with rather surprising comments from my wife.

                She will not entertain getting back together. She clearly stated that as her husband it was my responsibility to be her caregiver and since I was having difficulty doing that she could no longer be with me. She also said that she knew there was no hope for us 2 years ago, but was afraid of being alone so didn't end it then. But through two years she kept telling me it was my fault that I wasn't doing well so ?I kept trying to fix it. It never had a chance and our counselor, who we've been seeing for a year was just as surprised as I.

                My wife could not be honest and had completely unrealistic expectations for me. Ironically enough, she now has several people taking care of her instead of one "slave" and she's beginning to spend a lot of money. It won't be long before she runs out of it and has to go into state care.

                So I'm moving on.

                Comment


                  #9
                  topcat, for me the shoe is on the other foot, i`m the husband and ms patient. i`m sorry for everything you`ve been thru, it`s unimagineable to me. good luck with whichever path you take in life. from the sounds of it, the 'marriage' ended years ago. please don`t be a stranger here. for what it`s worth, the caregiver idea for a job sounds like it`s right for you if it`s a job you`ll enjoy. good luck.

                  dave
                  hunterd/HuntOP/Dave
                  volunteer
                  MS World
                  hunterd@msworld.org
                  PPMS DX 2001

                  "ADAPT AND OVERCOME" - MY COUSIN

                  Comment


                    #10
                    Hi Topcat,

                    This is exactally why I refuse to have my wife become my caregiver, and Yes I will leave if I need to, She will not be my care giver! , and that is understood.
                    we are happy and in love and this is the way it is!
                    I will not turn her into a 24 hour a day nurse I need her for so much more than that!

                    Comment


                      #11
                      Hi Topcat,

                      WOW, these are some of the issues I have had rolling around in my head. I have RR and am still working but just never know for how long. I dread the day I can't fend for myself (even more than dying). One of my BIG unknowns is how my wife and I will deal with these issuses.

                      Thanks for sharring and I sinserely hope you find a resolution with your wife.

                      Mike

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