Charlotte,
These are very tough questions! I almost think that you need to break them into smaller bites.

Question 1, What I found was that everyone would tell me that they were praying for Erik and they were always wanting to know how "he" was doing, and after having my feelings hurt many times because they didnt think of me too... I finally began saying "WE" "We are doing okay!", "We could really use our lawn mowed." "We had a really bad day today" or "Erik is having a really good day, but frankly I'm really struggling."
As caregivers we tend to put ourselves last all the time (a mom thing too) and I just realized that people needed to see how I was doing too, so I started interjecting "me" and "we" into my conversations about Erik.
When I began doing that, it brought on an awareness to the people around us, that this was a "Family thing" not just an Erik thing.


As for the 2nd question,
I dont know how to deal with the guilt. I have a very strong faith, and I try every day to hand the saddness and fear and guilt to God, because I cant do this one alone.
Every time I look at my husband I see his scar, and I can look in his eyes and see the pain and the uncertainty due to this retched disease. I wonder if sometimes he doesnt ask "why me and not Jenn?" I know that he would never wish this on me, but I cant help but wonder. I know that God has his reasons in allowing (not making it happen) this to happen, and now looking back into it I can see some of the reasons that it was Erik, not me. I could have never been as dignified in this struggle as he has been.


Something else that I did was after people began offering helps here and there, I started a notebook with thier names and phone numbers, and when I needed something I just went down the list of people and picked one for the job I needed done. I called it using my resources. Plus then I wrote next to thier names what they had done, so when this was all over, I could send them a thank you, and I didnt have to try and remember what they had done during this scatterbrained time.

I hope this isnt too discombobulated, and you can use some of it!
More questions please!!!
Jennie