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Thread: New to this...

  1. #11
    As an alternative to private messaging Kate and Obieone, follow these steps:
    1. Sign in using your screen name and password
    2. At the top of the page is a blue banner called "User Control Panel"
    3. Select "User CP" (There are options here you might like to explore)
    4. On the left of the page that appears, scroll down to the second major heading called "Networking."
    5. Select "Group Memberships."
    6. There are three choices of groups to join. Select "Caregivers."
    7. Follow the instructions to join the group.

    Look forward to seeing you there.

  2. #12

    You are an amazing woman, I know you didnt come here to hear that but it needs to be said. Your husband and son are very blessed, thank God you have had the courage and strength to continue the fight regardless of the hopeless feedback you have been hearing. Amazing!

  3. #13
    danielle, join carecure and you'll never look back. theres more help here than you'll ever imagine.


  4. #14
    My husband qualified for medicaid in January. We are now on a waiver program (we live in MN) where I am paid and we have some PT aides for AMs and some PMs. It was really complicated to get started and some frustrations with red tape, but working out so far. He had been living at home several months before we started. Because he had been to a good rehab where I was taught to do his care and he was taught to direct his care we had a lot more confidence. He had a bad set back last summer and all they wanted to do was put him in a NH. I had to fight to get him home. He needs a lot more care now (trachea, suctioning, resp, vent and oxygen at times) than when he left rehab in March of '09. Things have not always worked out as we hoped, but under the circumstances we do well.
    I will not lie to you. Some days are exhausting and very hard and I am worn to the bone. I always say if I were 25 years younger and he 100 pounds lighter it would be easier, but you don't pick the circumstances. My children are grown.
    Do you have any family that could help? Are there any home health agencies in your area that could give you information? Wish I had some ideas or advice for you.

  5. #15

    Welcome! Sounds like you are doing a great job being an advocate for your husband. He is lucky to have you.

    Have you tried contacting the Shepherd Center in Atlanta?

    It's so important to keep fighting and trying to get him the best care, PT & OT possible.

    Stay strong!
    Ugh, I've been kissed by a dog!
    Get some hot water, get some iodine ...
    -- Lucy VanPelt

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