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  • hi Christina,
    I am sorry to hear that you are having a rough time. I can so relate
    to how your feeling. I have those days when I want to be free as
    well. This diease sucks so bad.....I wish that there was more
    education about how this diease changes everything about
    your loved and the family. It is the worst thing I have ever
    had to deal with in my nursingcareer. I hope that you find some
    relief for yourself. I am so tired of just waiting for the next change
    to happen. I will keep you in my thoughts and prayers.
    take care
    I hear you.....I dont have much help either. Scotts parents or older and still work FT, so it is the kids and I that do it all. Hospice comes 5 days a week for two hrs, they help me get him in the chair and feed him while I nap for a few hrs. We have decided that scott doesnt want a feeding tube or trach, so comfort is all we are doing. Sucks to watch
    him decline though and not be able to do a darn thing about it. I wish there was something on the horzion as to tx. For now it is prayers around. I hope things improve for you. Scottie has been keeping us up lately too. He is to the point that he just wants to die. so sad. well take care. Thanks for listening.
    Hi Christina,
    I hope things are looking up for you. I think we arein the same boat too. Are you still working FT and taking care of kids and your husband? I know the craziness that you are feeling. I have gotten alittle more sleep lately, but working at night is tough for me. Do you get help from family? I was just cking in and wanted to say
    Hi. take care. Oh congrats on the baby news..how exciting!!!
    Hi Christina,
    Sorry to hear that you are not resting well. Skottie and I went
    thru the same thing for a few months. The kids do help with turning
    here, but they were getting tired too. I got an air mattress for him and
    has been sleeping better. He wakes up usually once a nite to
    be turned. Much better that every two. we also adj his meds for
    pain and sedation. He is getting worse with swallowing and his
    breathing has changed. Well, I hope you get some rest. I will
    keep you in our prayers.
    sheryl wife scottie dx 06
    Just a little note to share with everyone, my oldest son and his girlfriend will be having a baby in Feb. 09.
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