Hey Trish, wow! I just read everyone's posts. I have a situation, well had, that is a little different then yours. One, I'm 17 years old and three years ago my dad, John McConnell, flipped over his bike and cracked his C1 and C2 bones. My dad got lucky, and I guess was born with the right genes because he had motivation. My mom really became his nurse and would take care of him. But I also took up a nursing position and I built a great relationship with him. In 11 months after intense physical therapy and perseverance he ran the new york marathon! I couldn't believe it either. He is doing better now and the only long term effect is he cant turn his neck as far.
Now, obviously my situation was a LOT different then yours but I can give you insight to how your boys feel. I was around their ages. One is that, sometimes if they act strange around their dad is it is because they are a little afraid to see their dad like that. It's just scary. A kid's dad is their superhero! And to see him in a wheel chair is really frightening. But I also think it is really important that you build a relationship with your family.
My suggestion is that you have a family game night! (Unfortunately we never had this... oh well... :( . heh) It really builds a relationship. As a family you have fun together! And if you want, maybe you could have the nurse play too! And if your husband needs something while playing the nurse can get it and come back. If games aren't really the thing watch a movie! My suggestion is a comedy. They're fun to watch! You'll get a laugh and your boys will be laughing with their father.
Reading your posts, you really don't talk about your husbands involvement. But he's still a human! He's still capable of thinking and reasoning. He can still think somethings funny. And I'm sure he knows when something is wrong.
I think right now, to build a positive atmosphere you need to build the relationship strings into ropes and big metal wires. (bad analogy, i know. haha)
And when you mentioned that it was nice to have a weekend without a nurse. Now I ask you this, were things hectic like you were on the verge of jumping out a window? Because, probably your son won't be sick every weekend so things would be even easier. And maybe if you did have a movie night, tell the nurse to go home, or change shifts maybe? Maybe you can learn a little more about what needs to be done every night so that you can spend a day or two without the nurse.
Right now, my grandpa has Alzheimer's and once again my mom has taken up a nurse mantle with me helping. It's a lot different but we still have nurses come a lot and it is kind of awkward. Our nurses are actually really great and I don't have anything to complain about but I still feel awkward having to watch what I say or (walking around in my boxers) all the time. So I get the feeling.
I hope I gave you some insight into your son's thoughts and hopefully you'll take some of my suggestions.
P.S. When my father was like that for 11 months, all I wanted to do was spend time with him.
