this is a nightmare

 Moonroe here, I havent posted in a while.Husband has been in the hospital 3 times in the last 4 weeks.The last stay was 12 days.He just came home yesterday. He was in the hospital for amonia levels for 4 days ,came home on Wed and had to call EMS on Thursday.I had to take my mother to Duke and when I got home he had been bleeding and didnt tell anyone. When I walked to the bathroom with him he just fell out and started bleeding from the rectum all over the floor.Sorry to be so graphic,but these are the things that happen with this disease.I really thought he was going to die right then. He was in ICU for 5 days and in a regular room for 7. I have to tell you ,a varices bleed is a very scary thing. Well he survived this second bleed and is back home. I dont think this is where he should be but apparently I dont have a say so. I just do all of the work. The doctors have told me so many conflicting stories.I t has been an emotional roller coaster. First they say he wont make it out of ICU , Then they say he is no longer a candidate for the transplant and hospice will have to step in. Then hospice is not longer in the picture and they want to put him in  in patient rehabilitation for 2 weeks so he can get stronger before he comes home. They give him the choice,and of course he decides to come home. That leaves me with the responsiblity of  helping him up and down,he now uses a walker becvause he is so weak. He has to have 24 hours of care and I have to find someone to help watch him while I go to work. I get no sleep because he is up and down all nite and cant do  anything by himself. His doctor said his chances for transplant are 10 to 20 percent and that is on the high side. I dont want him to give up hope,but at some point we have to be realistic here. My husband still wants to go ahead with all of the counseling and tests at unc and I can hardly get him in and out of the car. It seems everytime he goes into the hospital he comes out a whole lot worse than before.I dont think I can continue to to do this. I have one meltdown after another and it is taking its toll on me.I really dont know what to do. Please I need  a voice. thanks mimi

Pink Grandma, That is the funny thing about all of this. Hospice came in and talked to us while he was in the hospital. They told us that he was no longer a candidate for the transplant and that he could live any where from 3 months to a year. But as you know this disease dictates itself. No one knows what will happen from day to day. His doctor tried to get him into in patient rehab for 2 weeks but all my husband could see was that he wanted to go home. There are just to many things that I cant do. I cant lift him.I am only 110 lbs and he is just dead weight. I definetly cant get him in the shower chair. I think I will try to get patient care service to come in a couple of hours a day at least to get him bathed. I dont know what else to do. He really should not be at home,but he will not listen to me and is oblivious to the amount of work it puts on me. He really needs around the clock care,and I just can not do all of it. Mimi

Thanks Pink Grandma,I was trying to figure out what the heck that was