Mr. B,
Welcome to forum. Just a thought about
your orginal post on this thread. My hubby has ESLD and I am the only wage earner. I took 10 months off of work to take care of him and there was no way I could work at my profession and take care of him both. It wasn't that I didn't care and/or wanted out of the relationship/marriage, I just physically and mentally could not do both things (and I am no Wus). My big worry was about
supporting us financially. Someone has to pay electric, propane, food, medication, etc. It was so so frustrating and no matter how much we talked about
it we couldn't find a suitable solution. (And yes, I was angry alot, angry to be in this position, angry that the disease took away my partner in life and now I was a caretaker instead of the professional I spent 7 years of college, 25 years of career building and lots of sacrifices to obtain.) I was totally new at being a caregiver...no children, no ill parents, huband was very self sufficient in the past.
I had to keep moving forward or we as a couple would sink. I don't have the expertise to continue daily care of hubby, who is now getting worse and is in more and more pain (and on such strong painkillers he is hallusinating a lot of the time). I worked hard to give him the opportunity to have a transplant and he is not interested.
Oftentimes when we would have conversations and I would share with him my frustrations and try to explore with him what we should do, he would think I was trying to "break up". I was used to problem solving with him as he was my partner. And, he no longer had the ability to help with problem solving, so when we talked he would just blow up and think I was trying to "dump" him, which was not the case. I know the HE was responsible for some of it, strong medications were also some of it. Sometimes it was like living with a person I didn't know.
As we struggle for solutions, we are now trying a nursing home (we call it the B & B) for awhile, we are now into day 73 and this solution also has it's ups and downs. I can visit regularly (daily..sometimes 2 or 3x a day) as the B & B is only 5 miles away. I can stay and watch tv, or nap with him or just hold hands and walk around the B & B.
We have also talked about
one of his friends, who recently got divorced, coming to live with us for a while and he could help take care of hubby. That way he could live at home, while I worked and supported both of the guys. Anyway, just wanted to throw this out there. This is our experience.
I have never done anything as difficult as caring for hubby through this. Here is the really hard part for the caregiver.....The very person that has been my rock, my support, my fix it guy, my biggest cheerleader is gone, and in his place is a vulnerable, ill and scared person that has needs I cannot met. Doesn't mean I love him any less, I just have to find a way to cope with this change. As does he. We are working at it.
Hope your partner can find a way to work at it too, Mr. B. Don't tell her to leave you. (My hubby tried that, too. He would get mad at me and try to "break up", with no idea of where he would go, who would take care of him, etc. I know he still loved me, he just felt he was failing me as a hubby, so tried to run. ....The way his Dr. put it was that he was trying to run from a fatal disease...but he would carry it with him where ever he went, so he should stay with the ones that love him.)
Hope some of this is helpful, coming from a caregiver who is struggling with many similar things as your loved one.
Angie1953
Post Edited (Angie1953) : 2/20/2012 8:42:18 AM (GMT-7)