I have always hated the word caregiver (or even worse, caretaker). I don't know why, but it has such a negative connotation to me. A caregiver is a worker in a nursing home. Not a 30-something wife. Not the attorney who worked her way through school so that she could get out of the horrible home situation. Not the woman that had dreams of doing great things. Not me. But, over the past few months, that is what I have become--in a loose sense of course. While I am not doing everything for Gess, especially now, I felt a definite shift in our relationship and our roles. And it makes me uneasy.
I suppose I knew that this time would come eventually...I mean, CF is a progressive disease. But Gess always insisted that it wouldn't be that way, that he is different and will stay healthy for a long time. And I wanted to believe him, so in a way I did. I certainly didn't think that this time would come so soon. He is only 32. Of course, it is not that bad yet. He still works. He is very independent. He is very capable. But during the course of the drama of the last few months, I did sense this subtle shift. And it scares me.
I think that it scares him too. We have talks about how he wants to protect me and things that he wants to do so that I don't have to take care of him. Silly things, like moving in with his dad or divorcing me so that I won't be responsible for his medical bills. When he talks about these things, nothing that I say can make him stop. No logic can override the emotion that he is experiencing at the time. So, after a while I just listen. Listen, and feel my heart break a little more each time.
I can't imagine what is feels like for him to feel his independence slipping. I am sure that he sees the toll everything is taking on me and he feels guilty. My naturual inclination is to try to hide it. But of course, there is only so much that you can hide. I cry in my room instead of near him. I try not to talk about "negative" things. But, it is still there. I wear the stress on my face. You can see the sadness in my eyes. My eyes always deceive me. And I know that he sees it.
So, here we are. Each hurting and scared and helpless. We see the pain that the other is experiencing, but cannot do anything. We just coexist.
As he is feeling better, I see that things are shifting back some, but I can't help but wonder how much damage these time do to us. I wonder how much of myself has been lost, absorbed by this disease and what is has done and what it will be.
Of course there are no answers, and I am not really looking for one. I just have to get up each day and try to do my best. To look for the little things, those moments between us. To enjoy the moments that we do have and make it a point to try to find them. I know that Gess loves me and he knows that I love him, and some days that will just have to be enough.