I stare at the prescription bottle with instructions: Take once a day. Pill count-30. Refill until this date, the following year. I have a heart condition, Hypertrophic Obstructive Cardiomyopathy (HOCM), and I need the pills to decrease the blood pressure to and from my heart.
“What can I do to help you all right now?”
After pausing for a few seconds, the palliative care nurse turned toward me.
“Our guest in Room 5 is active, and I haven’t been able to get in touch with his children.”
Charm City Steel, the five-piece band, pick up their sticks and in rhythm tap out a fetching tune on their huge steel drums. This is the preamble to a special program to celebrate and remember my mom, who died of advanced dementia at age eighty-seven in my home. The music lifts me as people wander in.
It is Mom’s memorial service, and she asked for this. It was ten years ago out of the blue, between steel drum dance tunes while vacationing together in Maine. She pointed at me from across the village green and said, “I want a steel band at my funeral!” No matter that she never brought up death or dying before or since. At that moment the heavens opened, and she delivered her wish to me. And I said to her, to myself and my daughter Amelia: “Done.”
A week and a half before, I went to Seattle to see my mother for the last time. I tried to coax her to eat and to move, but at sixty-five pounds she was declaring herself no longer part of the living world. She was, quite deliberately, choosing to die.
“I want to do something now. What can I do?”
My mother’s body and mind were restless, moving in their own patterns just like the gray, low-hanging clouds that morning in August. “Why don’t you tell me what you want me to do?”
She didn’t wait for my response but shouted, “Don’t you dare tell me what to do, I’m not a child!” while pounding her cane on the floor with such might that I could feel the vibrations in my stomach. Then she sank into her chair and fell silent, her eyes glazing over.
I prepared to let go and wished for more time. There was nothing left but to let my youngest son be at peace. Tomorrow we would unplug the machines.
His transplanted liver was failing, and he was too sick to get another. He coded three days earlier. Now, beneath the sedatives, paralytics and seizure medications, he was convulsing continuously.
There was no hope for meaningful recovery. As a physician, I knew it was the right choice. As a mother, I was heartbroken. How could I reconcile the rightness of the decision with something that felt so wrong?
Sometimes, the answer is so small and simple it goes unnoticed at the time.
I had barely entered my twenties when my parents died, within two years of one another. Well-wishers inundated me with questions about whether I would keep the family homestead, continue my education or change jobs. Should I donate my parents’ clothing and furniture and start a new life in a smaller place? After all, the old status quo was gone, never to return.
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