Voices / Column

End of life

A daughter’s journey through ‘anticipatory grief’

By Deborah Lee Luskin/The Commons

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.

* * *

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.

* * *

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.

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