Find a place inside where there’s joy, and the joy will burn out the pain.
– Joseph Campbell
April 1st was a Tuesday. Peggy Puetz came over in the morning so I could go for coffee, and a small dose of life outside of the walls of 1205 N. Mandan, and to pick up some things at the grocery store.
The weather that morning was pleasant. Spring was in the April air, and Peggy’s offer to sit with Joanie for a little while gave me the much needed respite from the intensity and tension surrounding her battle. As noted before, just getting away from the situation for a little while is something any caregiver in a similar situation needs to do.
For me it was enough to have a half hour to an hour at the Elbow Room among friends who all knew, thanks to my friend Wayne who kept them up to date so I didn’t have to, what was going on, and not have to dwell on it. Outside of the rhetorical, “How are things going?” to which I replied, “Fine,” the talk was mostly of sports, politics, and jokes. The support and understanding that came with those interludes was welcome and refreshing.
Joanie had asked for some soup, chicken noodle soup to be specific before I left, so when I stopped by the grocery store, I stocked up on that, getting more than I knew I probably would need, or that she would eat. I always did that when she ordered something, thinking that it was a positive sign that she wanted anything, and hoping, like her, that it was a good omen, and that her appetite might be returning.
After she woke up around noon that day, and I gave her some meds, she asked for soup. I fixed her some, and sat there by her and helped her, scant tablespoon by scant tablespoon, take it in. I think she had about six in all, between dozing off and waking while I sat at the ready waiting with the spoon to give her more. She never took anymore than those six.
A while afterwards, when she was awake, she told me she thought she ate the whole thing. I told her, quietly, that she hadn’t, and in her now plaintive and tiny voice she said to me, “I’m trying.” I told her that was great, and we would try again later when she wanted to. When I heard that voice, I had to hold my mud, it was so sad, but I couldn’t let her see me being anything but positive. It seemed to me she was doing her best to prove to me that she can get better to ward off the inevitable. I think, on occasion, she was getting pissed at me just a little bit when I would press her on eating or drinking. She never really said anything, but I could tell it her face, and when I saw that I would just back off.
After she had the soup, and her Dilaudid and Atavan, she drifted off to sleep, and I knew she would be out for several hours.
These were the days, when she was sleeping soundly, when I would have time to reflect, and these were the days when that reflection tested me as I tried to keep this all in perspective. One of the things I realized during those times of reflection, was that there is nothing that prepares you for something like this. There is no handbook in existence that can help you. You imagine, during darker periods, what it might be like, but the reality you face is nothing like what you imagined it could be. So it is that you are going where you have never been before, doing your best, and hoping that between you and the doctors it is good enough. When you see it isn’t, then you still do your best to support her, see that she gets what she needs when she needs it, and simply hold her hand to let her know you are there and are not going away.
In the evening, Orell and Cathy Schmitz stopped by for a few minutes. Orell brought me an Absolut martini, and under the circumstances, it tasted quite good. Cathy talked to Joanie for a little while, even though Joanie would still have her dozing off moments. That was okay, they were good friends, and Cathy knew the critical nature of the current situation.
After they left that night, I put on some of Joanie’s favorite music, songs I knew she really liked by singers she really liked. The sound on the televsion was muted, and the music from the small cd player we had wasn’t playing loudly enough to keep her awake, but loud enough so I thought deep somewhere in her half sleep, she would recognize and remember why she liked those songs.
Maybe I was just hoping that the music would do something for her the medicine couldn’t. Or maybe I was just hoping that what I was doing was doing something for her the medicine couldn’t.
I never knew, because there is no handbook for that.