thoughts on living with a person with a chronic illness
My Other Blog...
This blog is only about CF stuff...I post a lot more on my "regular" blog, so visit me there!
About this blog
My name is Lisa and my husband has cystic fibrosis. We have been married for 10 years and there have been some challenging times with his health. The purpose of this blog is to give me an outlet and maybe to help others going through similar situations.
One of the things that has bugged me since day 1 is a fear that I gave up on Gess too soon. It all happened so fast. I know that might sound weird considering how sick he had been and how often he had been in the hospital, but I didn't think that he was so close to death. At times Gess said that he felt like giving up and I remember telling him that he wasn't sick enough to give up. His PFTs had taken a hit, but he was still in the high 30s and not on O2 consistently. So, this seemed like a bump (albeit a big one) in the road.
When I look at the "facts", i.e. his kidneys were failing, they had to discontinue antibiotics because of that, without the antibiotics his lung infection couldn't get any better, without his infection improving he could not come off of the vent, his body was not accepting any nutrition, etc., I know that it was time and I didn't give up too soon. But there is this nagging fear in my heart that I did. He was such a fighter and always came back from such bad places.
In the early days we was clearly fighting; trying to get the vent tube out of his mouth, insisting that the doctors try to take it out again and again, etc., but by the time I made the decision, he has been non-responsive for about 2 days. The only time he would have any sort of response was when they tried to suction out his lungs and he just appeared to be in excruciating pain. In sitting with him, I didn't sense any fight left at all. He already seemed gone.
I know that he didn't want to live on a vent and wouldn't want the life that he would have if by some miracle they could get him off of it. So in a sense, he had made the decision before, told it to me clearly, and I just had to verbalize it when he couldn't. But I could have said no, I could have said "keep trying." I could have fought for him longer. Should I have fought longer? My mind says no, but my heart isn't so sure.
Even after the decision I kept waiting for him to sit up and say "just kidding!" Even now, I keep waiting for him to walk through the door or to call me. I know that it is not going to happen, but my heart won't let go. What if I killed my husband? What if I gave up on him and failed him?
In the middle of the night I got the "bright" idea that I was going to try to contact his doctor and have him tell me that I was right, but I'm not sure that is appropriate, or would even help.
I just want to be at peace about what happened, but I can't. I miss him so much it hurts. I am tired of walking through these days without him. I know that we have a "real love" and that it was "special," but I still want that back! I don't want to be a widow. I don't want to do any of this. And I'm scared.