(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
(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.
received wonderful care, but whenever she spiked a fever, she was
rushed to the hospital; after each episode, she lost ground.
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.
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
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.
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
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.