http://www.vpr.net/audio/programs/56/2013/01/01022013_vpr_Luskin.mp3
(Host) As the new year dawns full of the promise of beginnings, novelist and commentator Deborah Lee Luskin has been thinking about how modern medicine now requires us to consider how to bring a meaningful life to a dignified end.
(Luskin) My mom had been in a nursing home for most of a year when she passed away last September. In that time, she'd lost her balance, her memory, her language, and finally, her motion. Every visit was a confrontation with loss. Mom was fading away. What none of us could calculate was how long it would take. And so, we entered a period of what Robert Santulli, a geriatric psychiatrist at Dartmouth, calls anticipatory grief - the grief one feels when a death or other loss is expected but hasn't yet occurred. Mom was still alive, but she wasn't really present anymore.
Shereceived wonderful care, but whenever she spiked a fever, she was rushed to the hospital; after each episode, she lost ground.
Meanwhile,my brothers and I were corresponding by email from coast-to-coast, trying to support my dad, coordinate care, share tasks, and comfort each other. We made sure we knew what our parents' advance directives were, and clarified our own chain of command.
We knew that prolonged dementia is exactly what our mother most feared. We discussed a Do Not Transfer Order, so that Mom wouldn't be whisked to the hospital where we feared she'd die under the bright lights of the ER. It was clear Mom would never get better. And while no one wanted to hasten her death, we didn't want to prolong her dying, either.
My sister-in-law of forty years is a retired physician and served as our liaison with Mom's medical team. She told us what she learned about putting a Do Not Transfer Order in place. After a series of clarifying phone calls and group emails, we were all on-board, and introduced the idea to Dad. He understood. And that's as far as we went - until it was time.
At the end of August,Dad threw Mom a birthday party. Mom was awake, and more alert than we'd seen her in months, though still mute. Once, she looked at me with what might have been a nano-second of recognition. Even though this was by no means a happy party, it was important for us to all be there.
The next day, Mom went in to respiratory distress. We agreed to keep her comfortable at the nursing home instead of whisking her off in an ambulance. She was given palliative care, slept twenty-four hours a day and stopped eating. Three weeks later, Mom died.
After a year of anticipatory grief, we all sighed with relief. At the memorial service, we began remembering Mom as she used to be, before she disappeared into dementia. She was opinionated and passionate, believed in fairness and hated waste.
I have to believe that that woman - the woman who loved us and drove us crazy, the woman who pushed us into the world and against whom my brothers and I pushed for our separate identities - that woman would have been grateful to be allowed, finally, to drift off peacefully at the end.
