Everything has changed and nothing has changed. I’m okay. Maybe better than I’ve been in a while.
I took Barry to the neurologist. I was concerned about his weight loss. I didn’t know how much weight he had lost, but I was sure he must’ve lost some because I’ve been getting holes punched in his belt. I wasn’t certain the doctor took my concern seriously the last visit.
Barry lost eight pounds. I was not surprised. Then Dr. Goudreau said that the involuntary movements of the Huntington’s was not sufficient to have caused the loss. I had been attributing all the weight loss to the Huntington’s. He suggested getting Barry to eat pudding with creatine powder to boost Barry’s muscle mass and weight. These are common-sense ideas, something I could implement immediately. He asked when Barry’s last appointment with the oncologist had been. (It’s been over a year because Barry was five years cancer-free in 2013. So no more routine CAT scans, etc.)
Once home, Barry refused any and all of Goudreau’s ideas. He was overwhelmed at even the idea of something new expected of him. I told him not to get upset at me for trying to save him. He told me to listen to his “no.” I said I was done trying to save him. He told me to leave him alone. My response? “Yes, sir.” I told him I’m not interested in shoving anything down his throat, metaphorically or physically.
Now I know what I’m dealing with. That’s why I feel better. I am no longer trying to prolong his life. I am hospicing him. Very different. I am trying to make him comfortable, insofar as possible. It’s not about keeping him up and running anymore; it’s about respect.
What about the weight loss? Clearly, the doctor thinks the cancer might be back. However, years ago Barry told me there was no way he could go through the whole chemo/radiation thing again, not that I think he could handle it now, anyhow. So, guess what? It doesn’t matter. We are not even going to address the issue, so the cause or origin of it is completely irrelevant. IT DOESN’T MATTER. Not one bit.
I feel a clarity now that perhaps I have never felt. I have confronted issues I’ve tried to avoid for a long time. That’s how it goes for me: little things bother me, increase their intensity, break through to the surface, and get dealt with. Sometimes life lights the fuse before things blow up. I couldn’t face these issues without knowing Goudreau’s positions and ideas. I needed a solid foundation of knowledge. I needed to try things out and see how Barry reacted. I needed those ideas to not originate with me (as if I had any interest in controlling or manipulating Barry).
Once the bomb goes off, you can sift through the rubble and see what you still have left. If I had lit the fuse, all of this would have been my responsibility. As it is, I am dealing with life on life’s terms and am relieved to finally have clue as to what I am dealing with.
Now it’s all about compassion and Barry ending his days as much on his terms as possible. My road is not easy, but at least I’m no longer pretending things are fine. I can’t believe how much of a relief that is.