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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).]
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Making such a hard decission was not easy. You did what you had to do and I know you thought about it long and hard. You should find peace in knowing you did nothing wrong, and went beyond the call. Your love for your husband has shown through your post.

I to have such love for my husband after 2 1/2 years of caregiving. I hope to have that love still after even many more years to come.

Asking yourself the "what if's" isn't gonna do you or anyone around you any good. Try to remember the good times, keep him in your heart, and allow yourself to grieve.

I personally have fears of going through just what you so eloquitely wrote about. My husband has other issues than yours did but liver problems is one that keeps raising it's ugly head.

You did a wonderful job and now it is time for you angel to lay down and rest awhile, find yourself again, and then move on with your life as best you can. Take your time, and remember we are always here for you when ever you find the need.

Thank you for your kind and encouraging words and I certainly hope you don't have to go through the same thing. My husband was a very strong man, but this desease took all his strength and I know that is what angered him the most was that he needed help to do everything he used to be able to do himself. Even simple repairs around the house I had to do because he couldn't and I know that would really get him down. He used to tell me that he just wanted to die and I would have to tell him he wasn't going through this alone I was there too. I had to watch him grow thinner and weaker. I had to watch my husband in a wheel chair,and see the pain he was in.That is what is so hard, to think of everything we used to do together,(dance and go for walks)we couldn't do anymore. I tried to make the most of what we had and I told him to do the same but I know it was hard for him. It killed me. That is one thing that I keep telling myself now. He isn't in pain anymore and he is walking again and happy.
Hello Lois,

I am sorry to hear of your loss and all the suffering your husband went through.. not to mention your own in caring and trying to do the best you could.. you did angel.. my sense is that he was very fortunate to have you in his life caring for him as you did..

It's difficult to watch a loved one die and in particular a spouse.. for there is so much to share.. so many daily losses, so much that you have to adjust to and take on after the passing.. if you find yourself really in a slump, you might want to seek out a support group for grief and bereavement or private counseling.. when we lose someone close, we must really begin to heal at our own pace in our own way but we need to monitor ourselves in case we do fall into a depression..

While we are hurting and mourning, I truly believe our loved ones would want us to go on and to heal as quickly as we can..

I heard you were in the chats... I do hope you continue to post and visit with us in the chats.. we are here to support you.

God bless you.. may your healing be gentle and nurturing.


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