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    An eye-opener

    Just returned from a 900 mile road-trip to attend my daughter's nursing graduation.

    My husband's parents went with us. His dad is 83 years old, and healthy. Both he and my husband did the driving. His mom is 78 and has had Parkinson's for 15 or 20 years.

    She uses a rollator 100% of the time; sometimes to walk behind it and push it, but, more and more, she sits in it and her husband pushes.

    I was amazed at how much work he does, on a daily basis, to help to care for her. She used to do more walking than she does now, and I hadn't realized how much he needs to push her now.

    It's especially a lot of work, helping her to get in and out of the car for rest stops, for restaurants, etc. I was glad I could be there to help push her to the handicapped stalls in the ladies' rooms.

    He does it all patiently and gently and kindly without complaining. I don't want my husband to need to do all that for me in the future. In the past, and, still sometimes, he was a gentle and patient person. But, my years with MS, already, have not been easy for him and it's hard for me to imagine him being as patient and uncomplaining-ly helpful as what I observed between his parents on this trip.

    I don't want this to be our future. I hope that my MS can progress slowly, or that I could be one of those people for whom progression and flares seem to "burn out" as I continue to age. I can live with life like this, without too much complaining. But, I don't want to feel like a burden, and if and when my MS progresses to the condition that her Parkinson's has, I worry that I will become, and feel like, a burden.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    #2
    I sure know how you feel. And the truth is, there aren't many husbands who will take care their wives that way. I always wonder, 'what's she got that I don't?'

    The good news is that people tend to treat their spouses the way their parents treated their spouses. If your MS becomes more disabling, I bet your husband will be like his father.

    You've picked a winner.

    Comment


      #3
      Originally posted by Mamabug View Post
      I don't want this to be our future. I hope that my MS can progress slowly, or that I could be one of those people for whom progression and flares seem to "burn out" as I continue to age. I can live with life like this, without too much complaining. But, I don't want to feel like a burden, and if and when my MS progresses to the condition that her Parkinson's has, I worry that I will become, and feel like, a burden.
      I agree and would ask what are you doing other than "hoping" things don't get worse to ensure you won't be a burden to your husband?

      In my case I'm fairly certain my husband will out last me with regard to independence and I have no intention of having him care for me. At this point I have acquired a fair amount of real estate and savings so we will be comfortable until I am no longer to take care of my ADLs. I have a MOLST and advanced directive indicating NO life-sustaining treatment at all except pain management. We might divorce so I can go to a crappy cheap medicaid funded nursing home and hopefully I will be neglected to the point where it hastens my death. Not exactly hearts and flowers but likely the way things will play out thanks to this miserable disease.

      “If there's a single lesson that life teaches us, it's that wishing doesn't make it so.”
      ― Lev Grossman, The Magicians
      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
      Anonymous

      Comment


        #4
        Originally posted by Jules A View Post
        I agree and would ask what are you doing other than "hoping" things don't get worse to ensure you won't be a burden to your husband? ...
        What am I doing to ensure that I won't be a burden to my husband?

        I guess some of my perspectives are different than yours are.
        - I am taking care of myself and my health as best as I can. I use a DMD. I take supplements. I exercise. I choose healthy foods. I manage my weight. I manage, and often work hard at preventing, stress. I pray.
        - My husband and I are planning to re-write our will at some point in the semi-near future. i am considering how I will choose my directives.
        - I don't expect to divorce. We've been through some tough stuff and, together, we've looked at our marriage commitments, in light of my MS and the challenges it creates to our lives and our marriage relationship. We have chosen to remain committed to each other as long as we both shall live, through whatever circumstances life has to offer.
        - I don't expect to go to a "crappy cheap medicaid funded nursing home" or to "be neglected to the point where it hastens my death", as you say that you do. I believe, as Palmtree suggests, that "people tend to treat their spouses the way their parents treated their spouses". Although I suspect that my husband may not be as patient and uncomplaining as his father is (his father is amazing), I have a lot of faith that he will do his best. Just as they do, we will decide together what kinds of care for me, and help for him if he becomes a care-giver, are in the best interests of both of us.

        A negative attitude, IMO, can only contribute to the health problems that could trigger "becoming a burden". I tend to, usually, have a glass-half-full attitude, rather than a glass-half-empty attitude.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Originally posted by Mamabug View Post

          What am I doing to ensure that I won't be a burden to my husband?

          I guess some of my perspectives are different than yours are.
          - I am taking care of myself and my health as best as I can. I use a DMD. I take supplements. I exercise. I choose healthy foods. I manage my weight. I manage, and often work hard at preventing, stress. I pray.
          - My husband and I are planning to re-write our will at some point in the semi-near future. i am considering how I will choose my directives.
          - I don't expect to divorce. We've been through some tough stuff and, together, we've looked at our marriage commitments, in light of my MS and the challenges it creates to our lives and our marriage relationship. We have chosen to remain committed to each other as long as we both shall live, through whatever circumstances life has to offer.
          - I don't expect to go to a "crappy cheap medicaid funded nursing home" or to "be neglected to the point where it hastens my death", as you say that you do. I believe, as Palmtree suggests, that "people tend to treat their spouses the way their parents treated their spouses". Although I suspect that my husband may not be as patient and uncomplaining as his father is (his father is amazing), I have a lot of faith that he will do his best. Just as they do, we will decide together what kinds of care for me, and help for him if he becomes a care-giver, are in the best interests of both of us.

          A negative attitude, IMO, can only contribute to the health problems that could trigger "becoming a burden". I tend to, usually, have a glass-half-full attitude, rather than a glass-half-empty attitude.
          While I disagree that those who have suffered the unimaginable thanks to this miserable disease have reached that point because they had a "negative attitude" it sounds like you know what you are doing for your future. Best wishes.
          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
          Anonymous

          Comment


            #6
            Thanks for your good wishes, Jules. The bad attitude part isn't exactly what I said, but oh well.

            Best wishes to you too. I hope your marriage and your health both have better outcomes than you anticipate.
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #7
              "A negative attitude, IMO, can only contribute to the health problems that could trigger "becoming a burden". I tend to, usually, have a glass-half-full attitude, rather than a glass-half-empty attitude."

              I would have to say "ditto", I only wish you good things for the future.
              hunterd/HuntOP/Dave
              volunteer
              MS World
              hunterd@msworld.org
              PPMS DX 2001

              "ADAPT AND OVERCOME" - MY COUSIN

              Comment


                #8
                I think that attitude is a big part of dealing with this disease. I am so very fortunate to have a spouse that is at my side through all the phases of this disease. We deal with the set backs and symptoms with humor and as a team. We also celebrate the victories such as a stable MRI report the same way. Like Mamabug, I also try to keep my glass half full because the alternative of disappearing into a world of depression and dispair is not very appealing. That's not to say I don't have my times of frustration at this new normal. I look around the MS clinic waiting room and I see people who have much more difficulty than I so. I walk with a cane, but I can still walk and I can still work full time.

                I hit the spouse jackpot!! I married someone who has helped me every step of this journey, been my biggest cheerleader and advocate. We do plan for a future of me getting worse that may include adapting the home we retire in and long term care plans. Better to be prepared cause you never know what's coming next! I know a positive attitude will not stop the progression, but I do hope it will help me cope with whatever comes my way with MS and life!
                RRMS: Diagnosed July 2013
                Assistive Device: cane.
                Meds: Copaxone, Ampyra, Vitamin D

                Comment


                  #9
                  Yes, H and C.

                  Although I don't believe we reach our level of disability because of a negative attitude, it can only contribute to the bad stuff that MS does to our lives.
                  ~ Faith
                  MSWorld Volunteer -- Moderator since JUN2012
                  (now a Mimibug)

                  Symptoms began in JAN02
                  - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                  - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                  .

                  - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                  - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                  Comment


                    #10
                    Acceptance

                    "It's hard to be sunny, when there isn't any sun;
                    And it's hard to be funny, when there isn't any fun."
                    Next two lines are way too cheery for me these days.

                    ("But it's easy to be happy, as you watch the clouds roll by;
                    If you know that always somewhere there are patches of blue sky.")

                    Came to terms with the story of Job (why do bad things happen to good people?).

                    You were there at Creation, you'll still there at the end; be grateful for your portion of life. Which means acceptance, I suppose. Doesn't mean you can't fight it.

                    (Probably not allowed to talk about religion, or death, which is kind of weird for a message board for people with MS.
                    Nothing concentrates your mind on those subjects like a chronic, progressive, incurable illness.

                    And I do believe in trying to stay positive, but it is truly quite tiring, keeping that grimly determined smile plastered on your dial.

                    Comment


                      #11
                      This is true for most of us i think

                      It is totally awesome that caring runs in the family! We so don't want to be burdens. This week for example I could not get my brains together enough to deal with several travel companies due to a schedule change. Executive functioning issues I think. I had to get my so to do it. It really isn't fair to her, she still works and does all the driving. I am afraid I might kill us in the car.

                      At the same time though, we all just do the best we can. Our spouses need us too sometimes and we try our best for them and all our of family without a second thought. There has never been a time when I was helping someone I love that I thought about what a terrible burden they are. Still and all if I still have my wits about me I would go into a nursing home of taking care of me became the central focus of someone's life cuz I don't think that's fair to the other person.
                      You can't stop washing your feet just because you're afraid you'll fall in the shower.

                      Comment


                        #12
                        with all that positive attitude how could you positive attitude people possibly get MS in the first place! Of course, I think being positive and trying to find some quality of life in the little things life has to offer will make for a more pleasant life, I have to live by that every day because if I dont I simply have no life, but I think it has no impact on the disease course whatsoever it is just a coping mechanism.

                        It seems lots on this forum are or turn religious as a coping mechanism, but to me the "God gave me this to teach me something, he has a plan for me", does not work as all I have "learnt" is what everybody learns in life; how to cope with the situation at hand whether it be MS or something else, he must not be very smart that God even I can come up with better ways to teach me something.

                        Some people have few symptoms some have plenty of money and help which automatically make life easier to deal with (for some) and some people have tons of symptoms nobody to help and dealing with that may take up all the time everyday turning life into well something very difficult to deal with. MS is not a monster, it is not a war, a battle, a fight it is just a disease with a multitude of presentations and we all deal with it the best we can.

                        Comment


                          #13
                          When MSers turn on other MSers or when a "we" and "them" mentality is used...it leads to people leaving this Board or people afraid to post. Not to mention it gets really old. Can't everyone just get along and be respectful?

                          Mamabug, I hope you are never a burden to your husband.
                          Katie
                          "Yep, I have MS, and it does have Me!"
                          "My MS is a Journey for One."
                          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                          Comment


                            #14
                            I also have the same fears as you. My husband is 4 years older than me. I also hit jackpot with a caring, compassionate man.

                            I have told him that when the times come, I will not be the reason he has limited quality of life as he will be consumed with my care, nor the reason our finances go quickly should my needs pass his capabilities or that he can't retire when planned. He has worked too hard in life and while I have as well, my working days have ended.

                            His response, "there is no joy in his life if I am not there to share it for better or worse". And he kids me that even with my German stubbornness and Irish temper, it is one issue I can't win, no matter how hard I try.

                            I hope none of us need to face these decisions in our lifetime.
                            Kathy
                            DX 01/06, currently on Tysabri

                            Comment


                              #15
                              there -- Your comments were not helpful. I come here, to MSWorld, to offer support to others, and to receive support as well. Sarcasm and twisting what I say in order to make fun of me is not called for. Please review Guideline One, which you agreed to, prior to becoming a member:
                              1. INTERNET ETIQUETTE: Show respect for others at all times.

                              Katie -- Thanks for your kind words.

                              Pennstater -- Thanks, also, for your words. It sounds like you have a winner for a husband. And, I have some German stubbornness, too. Actually, although it won't abolish me MS, my stubbornness probably does help me deal with it. It's not always 100% bad.

                              ~ Faith
                              ~ Faith
                              MSWorld Volunteer -- Moderator since JUN2012
                              (now a Mimibug)

                              Symptoms began in JAN02
                              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                              .

                              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                              Comment

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