I wrote a very long response and lost it somehow...so here is my second crack at it <img src="i/expressions/face-icon-small-wink.gif" border="0">
I think that the first thing I would do is talk to your "caregivers" (after this episode is over preferably) and talk about what are the most difficult things for those people in particular because it would probably be different for each person. Having very open communication is always a good thing!
One of the most difficult things for me as a spouse is not knowing what I should be doing and what is helpful, etc. There are times when I do everything that I can possibly think of and then still end up feeling guilty because I am not doing enough. So if you can tell your caretakers what you want and need, I think that would be extremely helpful. We are often completely clueless as to what to do and that can be really hard to deal with! So, if you want something--let them know. It really does make it easier to just know what to do.
Also, the simple act of saying "thank you" or "I appreciate everything" really means a lot. Recognizing that your caretakers are stressed, etc., really means a lot. I know that I feel like things are "so much worse" for my husband that I feel guilty for being upset, etc. But when he says "I know that this is really hard for you, thanks for everything" that reminds me that I am profoundly affected by this and he appreciates me. That helps bring me back on track with my thoughts and feelings.
Having things/way to entertain yourself. I think that often times caregivers feel like they are supposed to entertain and that can be hard. It is also so much easier for me to not be at the hospital when I know my husband has a stack of his favorite movies, his laptop, comfy pjs, plenty of snacks, etc.
Also, encourage your caretakers to bring things that they can do--like a book, or knitting or something. Sitting in the hospital is not fun for caretakers either, and it does help to have something to do. In that same vein, if you know that you will asleep for awhile, etc., encourage them to go home or go and do something else. One of the worst things to do is to watch someone you love sleep in the hosptial. It is very hard to control all of the feelings, fears, etc., at times like that. Plus, it can add to stress if they feel like they have other commitments, etc. You giving them permission (or even ordering) them to attend to these other things can really help them manage the stress. With us, we have sort of figured out that Gess likes to sleep in the late morning/afternoon while in the hospital. I often come and just sit there--which is not good for me. So the last visit, I would usually do something else during that time and then come over in the evening when he was more alert and watch a movie with him or play cards and take a walk, etc. That really makes a huge difference. Sitting in the hospital all day is draining for us too and often prevents us from doing other things that need to be done at home/work. Setting the time like this helps me have a better balance.
Also, I know that this isn't feasible for some--but I would avoid having caretakers sleep at the hospital if at all possible! I used to sleep there and never got any sleep or down time and just felt crappy. Caretakers need sleep during these times especially. Since we got our dog I have to go home in the evening and that is great.
I am sure that there is more...but I don't want to risk another mispost. If anyone wants to chat with a spouse with lots of experience with this stuff, please feel free to PM me!
