checkmat2

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
sheryl

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.
sheryl

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!!!
sheryl

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.