During the early years of Dale’s diagnosis, we participated in a clinical trial at Emory. On the way to Atlanta for an appointment, I realized I had forgotten to pack something and mentioned it to Dale as I drove. He replied, “Well, you’re thinking for two now.”
Yes. It was a new reality. I was adjusting to it.
All the tasks we had shared as two would gradually become mine alone. Planning. Managing finances. Shopping. Meal preparation. Contacts with friends and family. My responsibilities expanded over the years as Dale began to lose the ability to care for his personal needs.
Now there are times of deeper confusion as language, emotions, and cognition are further disrupted. “Thinking for two” is not enough when the disease clouds his.
So, I “tune in” by listening to his vocal tone. I watch his facial expressions. I notice the sound of his breathing. Sometimes my guesses about his needs are right; sometimes they are not.
It’s as if Dale is listening to music that I can barely hear. My attempts to join him in that music are improvised at best. There are times when I can discern familiar melodies—variations on themes that I know well. “Ah yes,” I think, “this is the music of Dale.” But other times the music sounds completely foreign to me. I have trouble finding the tempo or even the right key. And when I do, the music changes again the next day—or next hour—or sometimes the next minute.
As someone who prefers to have a musical score to read, the near-constant improvisation can be exhausting. I wonder whether I will have enough breath to keep going.
The only way through is to expand our duo and form a band. Thankfully, experienced players have joined ours. There are times when Dale’s caregivers hear the music far better than I do. While I may know “Dale’s theme,” they know the musical genre we are playing now. I listen to their riffs in amazement and gratitude. And when it’s my turn again, I can come in refreshed.
As we play, I learn the lessons of improvisation: Be in the moment. Listen. Match the emotion. Loosen up. Remember that mistakes are to be expected and are quickly forgotten. And as guitarist Joe Pass said, “If you hit a wrong note, then make it right by what you play afterward.” May we make it right for Dale.