Announcement

Collapse
No announcement yet.

caregiver, new here

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    caregiver, new here

    Greetings
    I am new on this forum, my wife has M.S. and I have been her caregiver for 15 years, but for the last five years, things have been getting worse. Now I sleep in a recliner chair and then sometimes on the floor with a pillow, close to her room , so that I can hear, if she needs me. My home has three more bedrooms, that I can sleep in, but then I can't hear her calling me and that would be aprox every two hours, during the night.
    She is at the advanced stage, and can't even move a finger, totally paralyzed, her voice is so soft that I can't make out what she is saying. I got to use a sling and power lift to transfer her.
    I had to fight many battles with agency's like CCAC really pulling hard to get her into a nursing home, which makes care giving all the more stress full and now I got to deal with her Doctor that does not script meds as he told me that soon there isn't much we can do. I am confused, why all these battles with people.

    Then only a few months ago, I was bringing her to bed in her power chair and her foot was out to the left of the chair to much and as I was going through the bedroom doorway, her foot got caught on the doorpost and broke her leg.
    That really set alarm bells going, CCAC and the new abuse committee was wanting to take her to a nursing home. So-oooo after 15 years, were are my good credentials, now I am classified as a abuser. It was my children, that fought for me and told them all that I would never just break moms leg on purpose, so the abuse committee and CCAC quickly went home let me off the hook and I thank those two agencies so very much for their kindness and all the stress.
    I am 61 years old and hold a full time job working the floor all day as a mechanic, I guess this is getting much harder, because I am getting older. I put my user name as hificanada , hifi is my hobby and my wife and I listen to classical music every night, she loves that and lets her escape, and I can tell you that it is the largest hifi in southern ontario, so that it can give the sound of really being there and the sound of really being there, gives us all a chance to escape.

    #2
    Hifi, what a heartbreaking post but beautiful at the end, your wife is blessed to have such love and support, you and your children must be pretty awesome yourselves.

    As soon as I saw "CCAC" I thought "Oh no". You must live in Peel, my late MUM had Alzheimer's and I've dealt with them. Enough said, I soooo understand your pain in dealing with them. Thank God your children were able to keep the abuse unit away, sometimes the authorities do carry it a bit far. Having said that, for anyone who has been aided by them and were the victims of real abuse, I do apologize for my strong opinions.

    It is a real battle to keep a loved one out of a nursing home here. The trouble is that they aren't nursing homes but "Long Term Care Facilities" meaning that it's not only seniors who live in them but all ages do. Anyone who needs long term care is a candidate and sometimes vulnerable seniors are put with young adults. Sometimes not the best mix.

    I'm so sorry that you have had all this on your plate while you could be using that energy to take care of yourself and your wife. Keep enjoying your music and listening to it with your wife, you sound like a beautiful couple and deserving of each other.
    Jen
    RRMS 2005, Copaxone since 2007
    "I hope to be the person my dog thinks I am."

    Comment


      #3
      welcome

      you sound like you are doing everything in your power to help and keep your wife at home with you ...I admire you and wonder if I will be able to be so brave should it come to that stage for us..

      I wonder if you could not set up a in home monitor system that would allow you to sleep in a bedroom- I hope you will look into some options for that , it is a much better rest in a bed !

      I am also in peel region and found the mississauga chapter to be helpful , I sure hope no one gives you more of a hard time , you have enough on your plate for sure
      Peace ~~ Kat

      Comment


        #4
        You sound like a very loving husband. Please remember to take care of yourself also.
        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


          #5
          Yes my friend such a heart touching story and i must say that well do have a right onto ourselves and should really try to take care of your self too.
          i must say that life sometimes demands something from you that you have never thought about it.. But still i think GOD loves those people who face the bitterness of REALITY.

          Comment


            #6
            You are an inspiration because you not only said the words, but have kept the marriage vows of "in sickness and in health."

            I know it must be so hard for you to watch your wife decline. You said you worked during the day, and then you work "at home" in the evening...do you have any respite caregivers so you get a break occasionally.

            My mom did not have MS, but was bedridden for many, many, months and was cared for at home. My Dad was physically unable to provide the care, so we did have nursing help, plus we kids (LOL, we're all in our 50's but still kids to our parents) took turns throughout the day, coming and going to help. So I understand the emotional and physical toll it can take on a person to watch a loved one's health go downhill.

            My hat is off to you sir! Welcome to the board!

            Comment


              #7
              Hats off to our caregivers!!

              I had well,you know, one of those days. The day I was unable to say"Im fine"
              I didnt always appreciate the help I didn't think I needed.
              As I stood there in the mirror as she did my hair because my arms wouldn't lift or cooperate with me I had finally realized I need help. More importantly I realize the love and gratitude I have for the help. I'm going to need more and I dont think I say thank you enough.
              So this is thank you and I love you to all the caregivers who may not hear it enough. For the help you saw we needed before we did. Or for things you do without even being asked..
              THANK YOU🙂

              Comment


                #8
                Yes; hats off to the caregivers. I'm glad, Donna, that you have a caregiver who sounds worthy of your gratitude.

                My thoughts are with you as you meet each new day.
                ~ 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

                Working...
                X