This is my first time on this site because I just got a computer and didn't know there was a site like this or anyone I could talk to until I just put the keyword "caregiver" in and it brought me to you. My name is Lois and I took care of my husband for approximately 4 years before he died on October 18, 2004.
My husband had cerrosis of the liver and diabetes and all the complications that come with them. He had arterial bypass surgery in his legs to get the circulation back in his feet which was successful in saving his foot, but he had a reaction from the staples and got an infection in the incision and because of the diabetes it took me nearly 7 months to heal the incision.After that he never walked without a walker. He couldn't go anywhere unassisted and he couldn't drive. So between my working two jobs on my only nights off I would take him out even if it was just for a ride, at least he got out.
With the cerrosis he occasionally filled up with fluid which meant he had to have a parasentesis done,which meant he had to have a needle inserted in his side to the area around his liver and the fluid would be drained from him. Sometimes as many a 8 litres of fluid would come out of the tube. Then he had to have an IV so they could put some of the good stuff back into him that the procedure took out. He started out having this done at least once every six months until he was having it done about once or twice a month. He was in almost constant pain from the numbness in his feet and hands. He needed special silver ware to eat because he couldn't hold them anymore. I did have some help with 2 of his sisters and our daughter(Nicole). His sisters would come down once a week to make sure he got his lunch so I didn't have to come home for lunch. Nicole moved back home and learned how to give him his insulin shots so I didn't have to rush around in the morning and give it to him before 6am. But he gradually just got worse. He fell out of bed a few times so I had to get a hospital bed. He fell walking back to bed, so I had to take him back in a wheel chair. No one else could get him out of bed but me and no one else could take him out but me because he didn't trust anyone else. I guess I just spoiled him. He then started developing dementia from the liver desease. He lost control of his bladder and bowels. Sometimes he could tell you he had to go and sometimes he couldn't. He couldn't remember alot of things and he was easily angered. I tried to get visiting nurses in but all they could do was about 2 to 3 hours a day, and that just wasn't enough, because by now he needed 24 hour care. I was setting my alarm to get up at least every 2 hours a night to make sure he wasn't wet, so I wasn't getting any sleep. After awhile like this his sister talked to me about a nursing home. That was the last thing I wanted to do because I used to work in one and I know how they are. She said there wasn't any other way because both of his sisters were getting up in age and if something happened to me no one else could do what I do for him. So I checked into it and I admitted him.
This was the worst thing I ever did in my life because I told his sister I just know that I am going to do this and he is going to die and that is just what happened. He went in the nursing home on July 6, 2004 and died October 18, 2004 and I feel that if I would have kept him at home and found some way he would still be with me.
He died of congestive heart failure. His kidneys stopped working so the fluid just built up in him and there was nothing I could do.I know he never wanted to be hooked up to any machines so I would not let them give him a feeding tube or hook up any other machines to him. He died peacefully in his sleep with me by his side. I know he is not in pain anymore and he is in a better place but that thought doesn't ease the guilt and pain I am feeling right now.
[This message has been edited by LoisMc (edited 01-03-2005).]