What came next was… a whole lot of nothing. I had cleared the decks in anticipation of Dad moving to California, but he was hesitating. Even though he had already made THE BIG MOVE out of the family house three years prior, he was now nearly 89. Moving sounded so daunting: packing, change-of-address, changing doctors, etc.
I no longer had to check my Blackberry constantly for new texts or messages. My phone wasn’t ringing, and I didn’t have to coordinate my calendar through my assistant.
No one was looking for me, needing my input or approval.
I found out, as many retired caregivers do, that you are not quite as essential to the world as you thought you were. The void of your departure quickly fills. You find out who your real friends are.
I enjoyed walking in the cool of the mornings in Davis. I started going to yoga. And I began cleaning out my house with a vengeance. I started tackling old papers, many of which needed to be shredded.
During those early days, with Maddie and Tommy off somewhere, and Todd at the office, I began to question my old routine of showering, blow-drying hair, dressing and putting on a little makeup. I dropped hair and makeup. Who was going to see me? Then I started skipping showers on some days. Who would notice? And one day it just seemed stupid to dress. Why dress if no one could see you? It just adds to the laundry.
Which led to the naked shredding incident. There is something that just seems wrong about shredding with nothing on. House cleaning or cooking without clothes seems okay, but to shred just seems unhygienic.
“What are you doing,” I asked myself. I wrote my friend Jim – my mentor even then – about my crisis of productivity. How would I measure the value of my days without project assignments and milestones, without output? He counseled me to just breathe and I would figure out what I was meant to do.
I breathed all summer.
Then in the fall, with Maddie installed at college, a thought bubble appeared above my head. I had the rare opportunity to use my skills to further a cause I cared about, without having to charge for it. And I cared a lot about hospice.
My mother had the bad fortune to be admitted to a hospital on the weekend. Three physicians were involved in her care, no one seemed to have any idea what was planned, and the nursing staff was reluctant to “bother” a doctor when Mom “sundowned” and became deeply paranoid. I asked the nurse manager to arrange a meeting with whatever physician agreed to be in charge.
Mom’s doctor came in, sat at the conference table, and said, “Your mother is terminal. It would be kinder for all parties concerned if she winked out right here in the hospital.” Then he rose.
“We’re not done,” I said. I explained that we were under no illusions about her prognosis. But she was scared. And we wanted her to be able to die at home, with hospice.
Another doctor took over her care, one who was on the same page with us.
I knew then that hospice – still, after two decades – was poorly understood by lay people, and worse, by doctors. Having been responsible for communicating about a hospice program early in my career, I knew that hospice was not “giving up.” It was better care, more caring care. I knew my mother would want to be at home, looking out on her garden as it bloomed in the spring, surrounded by familiar things. Hospice was our best shot at being able to let her die at home, in comfort.
I offered to develop a pilot program under the auspices of the California Hospice Foundation to raise awareness of hospice among consumers. The “Friends of Hospice” public relations campaign was implemented successfully with the cooperation of three hospice programs and CSU Chico’s Tehama Group Communications in Chico, CA.
Sometime that fall, I talked to Fr. Greg Bonfiglio, president of Jesuit High School, about my transition. He asked,”Have you ever thought that perhaps you are being called to this work?”
Even after Dad moved to California in March 2006, I found that I still needed something beyond caregiving to provide meaning in my life. Maybe it’s that his needs weren’t that demanding. But I suspect more of it is what Mom recognized when she made her hospital bed speech and said that I was “competent, with a high level of activity.” It’s who I am.
As when Maddie and Tommy were young, I couldn’t completely let go of my own needs and focus only on theirs. Maybe it’s selfishness. Some would certainly say that it is. I have a Puritan work ethic without the Calvinist self-loathing (as Dan Pallotta recently described it in his Ted Talk).
I wanted to make a difference in Dad’s world, and keep contributing to the broader world. That stake in the community was a source of strength that sustained me through the very hard times.
Next: What happens now, when the merry go-round of caregiving has stopped?