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anyone that cares for an adult child with Primary Progessive MS

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    anyone that cares for an adult child with Primary Progessive MS

    My husband and I are caring for our 25 year old son, who has lost the ability to do anything for himself and has to have 24 hour care.
    We are trying to keep him at home as there are no longterm facilities here except old age nursing homes. We do have 50 hours a week of support workers, that allows us to work.

    I am exhausted, fighting tears daily, so very sad watching your childs life being sucked away by this monster MS and frankly how do you keep hope when all you hear is "there is nothing more we can do but keep him comfortable"

    His case is so different than RRMS that finding someone to relate to has been difficult.

    Anyway I will keep my head up and go on as I have been living only one day at a time, but would really like to talk to someone.
    one day at a time

    #2
    Hi,
    My heart goes out to you and your husband as you care for your son.

    May I suggest on Wednesday evenings in the chat room, we have a dedicated chat for caregivers. The Moderator for that chat is a mother caring for a daughter that is about the same age as your son. I think she may have some words of encouragement and some suggestions for you.

    The chat is at 8pm est. We do have a separate and private chat room for this chat.

    I invite you to take advantage.

    God Bless you all.

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      #3
      Similar situation

      Hi,
      We, too, care for our 37 year old son and I know the heartache you feel on a daily basis. He isn't as disabled as your son but his RRMS has changed to a steady decline. He refuses to go to the Dr or therapy after years of doing so. He even tried the CCSVI but he didn't have the narrowing.
      I'm so sorry for you, your son and family. It is SO HARD to see your child suffer and know there is nothing anyone can do. We all hope for the miracle that is out there and since our son was DX in 1999 there have been significant research that has helped inch us all closer to a cure. I have MS as well with mild symptoms and wish I could trade places with him every day. I know how you feel. I long for the "kiss the boo-boo away" days.
      Did you try the Wed. chat room that was mentioned? Let me know if you found it helpful. I have stayed away from chats and boards for years as they heightened my fears. I might give it a shot this week. I need help with how do you help the hopeless? Love, words, hugs, and kisses only go so far. Hang in there. I will remember your family in my thoughts and prayers.

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        #4
        Thank you for understanding, I am sorry to hear someone else is going through the pain and grief I am, but it;s nice to know someone understands. I don't get much time to chat or even check out the site, as my days are consumed with taking care of Tony.

        Right now I am suffering from dispaire because we have been given no hope, and have been told Tony has a 50% chance of making it 2 years, how do you deal with that?

        I am trying so hard to stay in control and up, but I feel I am loosing and I know that wont help anyone, but I cant seem to help feeling so bad, I have been geiving for 5 years since he was diagnosed for the loss of the son I knew and all the things he wouldnt be able to do and enjoy, now I have to deal with loosing him completely, I know maybe I sound selfish, but I don;t want my son to be suffering like this and I don;t want to lose him either.
        I have wanted to join the caregivers chat but I never seem to have time when its on.
        one day at a time

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          #5
          Jan and Cheri, I am so sorry to hear about your sons.

          Comment


            #6
            Jan and Cheri - my heart breaks for you both and your sons~ I wish there was something to say to take away your pain. We are here for you and listening. I am sending healing thoughts and prayers for your families.
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

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