The old saying, the pen is mightier than the sword couldn't be more true than when wielded by a caregiver. For many, writing is a way to make sense of the pain that comes with watching a loved one slowly succumb to cancer, dementia, or any long illness. It can also be transformative — a vehicle that helps people move through their grief.
Deanne Poulos leans toward her computer screen, her Zoom window filling with familiar faces.
“Everyone welcome, this is our final of five sessions,” she said. “How are you feeling about that?”
Poulos is the caregiver services manager with Duet Partners in Health and Aging — a nonprofit serving homebound seniors and family caregivers in the Phoenix area.
The group chimes in, “Sad.” “Very sad.” There’s also laughter.
Safe space
Poulos is leading a writing workshop for family caregivers. In this group, secrets are shared, tears are shed, there’s also laughter.
Among the squares on Poulos’ screen is Emily Grotta.
“And Emily, I believe you were going to go first," said Poulos.
“OK,” said Grotta. She takes a breath and begins reading her piece. Today’s writing prompt was “profile.” Something Emily knows a lot about as a former newspaper reporter.
But when it comes to writing about your husband’s life, “Some was easy: the dates, the jobs, the college degrees, and more. But how to capture the true John?" she reads. "The smile that made everyone a friend, the anger that sometimes turned into a lifelong grudge. How he tolerated pain but could faint at the sight of a needle.”
Grotta continues on. She doesn’t look up.
“My husband, John's, decline was physical, not mental. So he had lots of time to talk about the past, current events and what my future would be after he died," Grotta said.
John Boudreaux made sure every detail was in order, down to his own obituary, which she learned about after his passing.
“John Boudreaux who grew up in Franklin, LA, and went on to a journalism and public relations career died ‘blank.’ He was ‘blank’ and is survived by ‘blank.’ He'd written his own obituary before one of his many hospitalizations just in case. And so there he was, tying up the loose ends, making sure I would be OK when he died," said Grotta.
Grotta's story ends there. The group stays silent for several seconds — a painfully pregnant pause for any writer. But that’s the assignment. Say nothing. Let the words land. Wait for feedback.
“And I watched people's reactions and I could see tears in people's eyes and I could just hear them going, ‘Wow.’ That's amazing, you know. I realized that they felt what I was feeling," Grotta explained days after that final session. "That was incredibly satisfying.”
This kind of writing is painful, but also therapeutic. A way for caregivers to be understood.
Writing can 'neutralize the trauma'
Cathy Wurzer is the host of Morning Edition at Minnesota Public Radio and the founder of the End in Mind Project, a nonprofit that uses storytelling and the arts to help people talk about grief and end of life.
“It's a really great portal to enter into what is difficult, right?" said Wurzer.
Like wrapping her own head around her father’s frontotemporal dementia — a brutal disease that robs language and personality over several years.
“And it was after his death where I realized that my writing was a way to process that anticipatory grief that starts prior to a loved one’s passing,” said Wurzer.
For Wurzer, writing also gave her a sense of control over the uncontrollable.
“So, I wrote in a way to beat back that FTD — to use the phrase, 'neutralizing the trauma,'” Wurzer said.
And she wrote to corral those wild emotions — the drowning sadness, the red-hot rage, the fear, “to try to sort it out and make some meaning of it," she said.
Processing our own role in caregiving
That's something Deanne Poulos can relate to. Before joining Duet, cared for her mother, who passed away in 2016.
“I'm still processing my own angst about my role in caregiving," Poulos said.
It’s the emotional hangover many caregivers experience — the ‘wouldas’; the ‘couldas’ and worst of all: the ‘shouldas.’ A counselor pointed out to me that I need to start writing some positive things about my experience… instead of just dwelling on what I didn’t do. How about what I did do?” Poulos said.
In other words, write the whole truth — the good, the bad and the ugly parts we’d rather bury.
A dress rehearsal for death
But this kind of writing doesn’t just help caregivers process the past — it can also help keep their own end in mind.
“As you write, and you allow yourself to replay situations and how you felt about that situation, and mine those emotions, it can become almost like, in a sense, like a dress rehearsal for what's to come,” said Wurzer.
And that’s not a bad thing, she says. Rather, it’s liberating.
“Because, in a sense, you allow yourself to consider the options: ‘How's it going to be at the end?’ ‘What am I going to think about?’ ‘What will I see or experience?’” Wurzer said.
And maybe that’s the real power in all of this. Writing becomes a kind of meditation — a way of leaning into the discomfort and ultimately learning how to live with the inevitable.
Want to write?
The next free Duet writing workshop for family caregivers will run Wednesdays, Feb. 4–March 4, from 2-3:30 p.m. via Zoom. Writing experience is not necessary. Registration is first come, first served, with a wait list for future workshops. To register, contact Deanne Poulos: [email protected]
