Hi, Everyone,
Just wanted to let you all know what's been going on with Ray. I've only been on sporadically and have been very down this last week. Ray went into the hospital last Saturday, stayed 4.5 days, for MRSA/Cellulitis infection of the face, head, sinuses, etc. He's been on IV antibiotics, but was able to return to the NH on Wednesday, as they inserted a PICC line for him (which came out on Thursday, so he went back to the hospital on Friday to have it re-inserted). The infection has been clearing up pretty good; although old sores have opened up other places on his body. As I mentioned in a earlier post, he had a lot of difficulties in the hospital, his agitation/anxiety has really gotten to a point that he seems so tormented. I was more upset about this than the infection itself (that seemed to be getting better). I just don't want to see him so uncomfortable, this was probably the hardest week in the 15+ years that he's had HD. HD has ravaged his brain so much, that many of the meds to help relax him just aren't working.

In any event, before he went into the hospital, they started to wean him off the Zyprexa and changed his antipsychotic to Haldol. On Friday night, Saturday and today, he actually did seem much better (cautiously optimistic). I've read so much about how bad Haldol is for HD, I was almost against him having this, but his neuro said that Haldol is definitely a last resort, but he feels at this point, if it will help this agitation, it's worth a try, so I agreed. Like I said, he has seemed better the last three days, so who knows, maybe it's working. God knows I've been praying constantly for him to just be at peace. He interacted with us more today than he has in quite a while, so that's a positive, too. Although he's not eating well and has lost some weight, he still wants his ice cream, pudding and soda (haha, he always liked his sweets).

I actually felt at certain points this week for God to just take him so he doesn't have to suffer anymore; he's suffered so much. I know I've been all over the place my past few posts, probably because I always want to fix things and solve his problems, but I'm realizing that some things just can't be fixed. It's very, very painful. Intense pain and heartache that I've never, ever experienced before. I went to bed everynight this week crying, thinking about how Ray used to be, how he was when we got married . . . and now what HD has done to him. And there's nothing that can take you back to that time. I wonder what he must be thinking. He's such a young man of 46. I'm thankful and blessed to have the love that we have and all the memories. I just hope that I can get myself together for what is to come . . . whatever that may be.

Thank you for letting me get this off my chest. I know I'm not the only one who has felt like this. When I read Marsha's posting about the research on RNAi, I felt filled with so much hope for the future. I hope and pray all this suffering can end for families with HD very soon!!

Awe, hang in there. Can i ask, why does he get so many ulcers, is he diabetic? My husband got them on his legs, and cellulitus, and it was very painful. Yes, usually haldol is a last resort, but, i'm so glad to hear that it seems to be working for him. Wishing you and him peace

Hi, Barb,
I'm not sure why he gets so many ulcers. He's not diabetic. He does have very sensitive skin, so that may be why. The doctor said that once you get MRSA, though, it usually keeps coming back, especially in someone with a weakened immune system.

Thank you again for thinking us!

mj, I'm so moved by your posts about Ray. The situation you are in makes my heart hurt, as I remember the deaths I've seen myself of loved ones. My husband didn't have HD, but he suffered for almost a year with various internal problems, this on top of his mental health issues. They would stop his meds that controled his mind's trouble while he was recovering from surgery and he would suffer so much I cried and cried. They gave him Haldol finally which did calm him, but he really needed his regular meds. Anyway your paragraph about your love for Ray and thoughts of the past brought tears to my eyes. I wanted so hard for my husband to come back to me, but at the same time knew this illness was not going to stop and that he must let go. His last words to me were "You know I love you."

You post moves me too. I wish I knew what to say. I can't imagine how frustrating and what heartace you've been thro. I can only hope it helps you to share it. Your husband is lucky to have married such a kind a caring person (also you too Alice...). Even tho looking back hurts, I hope it can eventually offer you joy as you review the happy times you shared.

What Ray is going through just sounds terrible. I'm glad he's feeling better, but it looks as though you are doing all you can to stay on top of his care. That's the best loving thing you can do for him now.

It is the pitts that our loved ones have so much to deal with . Wishing things were better . db