For the last few months, I have more and more been drawn into a situation of caregiving for my life partner. First his hip deteriorated, then there was the hip-replacement surgery, and then an additional recovery from a severe drug reaction. For a long time, I thought I couldn’t write about this on a blog, because it’s just too personal and private for Stephen, and also at times the experience has been an emotional roller coaster for me. Now here I am writing about it. I think it is okay to do so for several reasons. For one thing, my experience is not all that different in challenging character from that of millions nationwide and perhaps even billions worldwide. For another, I have found my way to composure and dignity in doing this service, and perhaps that may be helpful and comforting to others. And finally, this has been an incredible journey of self- AND other-discovery, and I want to talk about it.
Somehow, I have made a transition FROM living a fairly open and creative life of getting out into the world by myself and with Stephen, TO providing most of his and my food preparation (he also is on a very restrictive diet), wound and personal care, home maintenance, shopping, personal communication with the outside world, and emotional support. And, this list is very incomplete. Additionally, I do have some health concerns of my own, like mild emphysema, and so my energy is not without limit. However, I had to get hold of the situation. It was either that, or a much more complex solution of somehow, and I can’t even imagine how, turning this caregiving over to others. So for today, just comments on topics.
The biggest challenge in all of this has been finding a way to maintain my emotional stability. I’m strong, and I am caring in some degree, but I also have a short fuse and can have a terrible temper. It’s something I’ve been working on my whole life. But beyond that there are situations that can lead into a feeling of helplessness and hopelessness. For example, one night we had to change dressings six times. That is now over, thank God. Occasionally, I did blow up, I did raise my voice, I did whine.
Fortunately, always I knew in the back of my mind, that I had to get beyond the fireworks. Here’s how I did that. 1) I developed discernment about when I just had to keep going, and when I could give myself a break. 2) I slowly realized that no matter how bad it felt to be in this mess, and no matter that I wasn’t getting too much nurturing myself, my situation was definitely not as bad as the one my partner was in. 3) I had to move my beloved projects of music and technology clear to the back burner on another stove somewhere. 4) I had to focus on making the communication between Stephen and me productive.
A second challenge has been maintaining hope in the face of discouraging events. It was particularly hard for Stephen to spend the first week after the operation becoming stronger and more mobile, and then after the drug reaction, loosing so much ground, which he has still not recovered. I noticed that I naturally stepped in to saying things like, “Now you are going to recover,” and “It’s eventually going to be alright,” simply because he had lost some of his ability to be his own cheerleader. Yet, I had to be careful to acknowledge his feelings of hopelessness as understandable. I wasn’t sure sometimes, was I encouraging or praying?
One thing turned out alright so far. I had spend the months of January through March redecorating and renovating the room where Stephen would recuperate during his daylight hours. I had worked hard on the garden so that there would be plants and flowers and birds to look at during convalescence. The home was reasonably in order. Which I guess made it much easier for me to contract my life and dedicate myself to sharing this prepared space with him and his healing path. Like yesterday, I spent the whole day buying, modifying and installing bed lifters because he needs to sit 4″ higher. Us city guys can’t go out and shoot a deer (although there’s a squirrel or two that I had my eye on), but the bed lifter episode definitely put my family guy hormones into a hum.
Yeah. I just hope he gets better soon.