I know what you are going through
This is actually Julie, the wife of Bulline (Brad).
Brad got GBS on 11-20-05, and was also put on a trach tube/ventilator, stomach feeding tube. He was totally paralysed except for his big toe. I know the guilt you must be feeling when you cant be there with him. You cant be there 24/7. You have other responsibilities as well, that are also important, including a mother and finances. Brad and I were not married at the time he came down with GBS (we just got married a week ago), but it felt like we were. Since I worked and had to keep the mortgage payment going, I would go to work, then go to the hospital after work, until about 8pm, then go home. Brad’s mom, who does not work, would come and sit with him for part of the night. A couple nights, if he were really scared, she would stay all night. I still have some guilt from it, but Brad knows I couldnt stay 24/7 with him.
Just a couple of things to note:
1. Brad did not like his arms or legs rubbed, as it made the pins and needles feelings worse
2. atavan and morphine were a good combo for him as well
3. get a “message/alphabet board”. I created one. On one side, I put the alphabet, and that way we could ‘spell out’ words. some hospitals have these already created. on the other side, I had “key words” such as ‘too hot’, too cold’, feel sick, turn on tv, turn off tv, bowel movement, etc. I would go down the list until he blinked yes or no (one blink for yes, two for no.)
4. bring in pictures of family and friends and put up where he can see them. also bring in a picture of him to put up, so the nurses/doctors know what he looks like healthy. My husband was a big guy, and lost 90 lbs in the first month, so having a picture of him was great.
5. dont be afraid to say yes or no to the nurses. I had to tell one nurse not to put deodorant all over his body. she thought it would help cut down on the sweat.
6. ask family, friends, church associates to take time to come visit, even it it’s just for an hour, to give you a much needed break.
Please dont hesitate to contact me if you want to talk more.