Thank you all for all of the advice and support. I had to literally carry him into the shower and help him into the tub a few weeks ago!!! The therapist told me I shouldn't have done that..that I should just have let him be and been there for him..but I just couldn't take it!! In my mind a shower should help..but to him it was killing him!! I felt so bad.

I have been working with a therapist..and will continue to go. Thank you all so much for replying. I'll continue to check out support groups, and links from this site...and just see where the ride takes me for now.

Hugs to all of you going through this horror. Please say a prayer for my husband and myself--I'm not a real religious person, but I'll take all the help I can get! I'll say some prayers for you all too!!!