WILLIAMSVILLE — My mom had been in a nursing home for most of a year when she passed away last month. In that time, she'd lost her balance, her memory, her language, and finally, her motion.
Every visit was a confrontation with loss. As clear as it was that Mom needed care well beyond what Dad had been struggling to provide at home, it was also clear that 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 and author of The Alzheimer's Family, calls “anticipatory grief,” defined as “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.
A couple of times, she spiked a fever or suffered shortness of breath and was readmitted to the hospital. After being put to rights, she was returned to the nursing home. But after each hospitalization, she lost ground.
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Meanwhile, my brothers and I were corresponding by email from coast-to-coast, trying to support my dad, coordinate care, share tasks, and comfort one another.
We made sure we knew what our parents' advance directives were, and we clarified our own chain of command. To their credit, our parents had advance medical directives in place based on ends they could imagine: cancer, car crash, stroke. It's not their fault they'd never anticipated global, vascular dementia, where my mother's body would outlive her personality and mind.
After one of these emergency hospital admissions was resolved and the shadow of our mother returned to the nursing home, I floated a trial balloon to my brothers via email. Was it time to consider a Do Not Transfer order, and what would that entail? Would the nursing home go along?
I feared that Mom would rushed to the hospital the next time she spiked a fever and die amid strangers under the bright lights of the ER. I didn't want to hasten her death, but I didn't want to prolong her dying, either. I thought it was more humane to keep her comfortable among her familiar caregivers; if possible, I wanted her treated and kept comfortable in her nursing home room.
My sister-in-law of 40 years is a retired physician; she'd taken on the role of family liaison with Mom's medical team. She communicated to the rest of 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 we introduced the idea to Dad.
He understood.
And that's as far as we went - until it was time.
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At the end of August, Dad threw Mom a birthday party. Fifteen of us were there, including my mother and her aide. Mom was awake, and more alert than we'd seen her in months, though still mute.
Once, she looked at me with what I thought might be a nanosecond of recognition. And she turned her head whenever my younger brother spoke. I'm sure she recognized his voice - for brief instants. Even though this was by no means a happy party, it was important for us to all be there.
The next day, Mom went into respiratory distress. We revived the conversation about keeping her comfortable in situ instead of whisking her off in an ambulance. Dad signed the form, and Mom was kept comfortable in bed.
She stopped eating. She slept 24 hours a day. The social worker told us “to prepare.” We knew just what that meant: We found the guest list from the birthday party we threw them seven years earlier, and divvied up who each of us would call. We planned a memorial. I wrote an obituary.
We were ready three weeks later, when Mom died.
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After a year of anticipatory grief, we all sighed with relief.
At the memorial service, we began the process of remembering Mom as she used to be, before she disappeared into dementia. The stories reminded us of the woman who loved us - and drove us crazy.
We laughed at the funny stories and wept at the tender ones. We remembered the woman who pushed us into the world and against whom my brothers and I pushed for our separate identities.
After anticipating her death for so long, I was surprised to discover that once it came, I was so sad. For even though it was often tough being her only daughter, she was still the best mom I ever had.