Confessions of a Caregiver

“We’re here to open doors in life as we can."

By Greg O’Brien

Source: Jennifer Crowder/Pixabay

The winter sun spills off Paine’s Creek Marsh in West Brewster on Outer Cape Cod in a reflection of grace. The marsh envelops historic Wing Island, a 140-acre pristine preserve that rises above the marshland, thick with salt meadow hay, spike grass, bulrushes, black grass, and seaside goldenrod. Named after the town’s first English settler, John Wing, the island is traversed by a one-mile trail that leads across the island to the bay, past patches of highbush blueberry, chokeberry, sea lavender, beach plum, wild raspberries, and arrowwood, whose long, straight shoots were once used by native peoples, who first occupied the region, to fashion spears and arrows. The island has yielded artifacts as old as 8,000 years.

I often come here, and when I can’t access the island in harsh weather, I view it from the nearby confines of a Dunkin’ coffee shop, in a rolling bend in the road called “Betty’s Curve.” I always sit in a cut-rate but cozy sofa chair and peer through an expansive bay window facing the marsh—a looking glass in the juxtaposition of a bright, broad overhead menu of breakfast wraps, sausage, egg and cheese sandwiches, chorizo burrito bowls, and muffins the size of softballs. A cup of steaming hot coffee takes the chill off my hands as I embrace the paper mug.

I’m sitting today with an old friend, Margaret Rice Moir, who recently lost her husband, Rob, to Alzheimer’s. Not long ago, I sat here with Pat Bertschy, who lost her husband, Bob, another close friend, to this demon. In the last two years, I’ve lost six close friends—among the many—to Alzheimer’s and other forms of dementia, leaving lots of spouses without mates, children without parents, and grandchildren with fewer loved ones to hold them.

The disease, having pruned my family tree, has come for me.

Rob and I used to work out almost daily at Fitness Revolution gym in Orleans, side-by-side on the treadmill. He was in better shape than I, but I’d tell him in jest when he got off the treadmill for a series of pull-ups with the energy of a college jock: “Don’t get lost, Rob, because if I have to come looking for you, we’re both screwed!”

He’d laugh, then head to the monkey bars.

Rob was a steadfast 1960s civil rights activist, advocating for the rights of farmworkers and protesting the Vietnam War. As a veteran history teacher for almost 40 years and president of the teachers’ union at the Rumson/Fair Haven Regional High School in Rumson, New Jersey, he always put his principles on the line. He was a truth-teller, as he saw the truth.

Margaret wrote of her husband shortly before his death: “Many of us know the evolution of Alzheimer’s. We know the bone-chilling fear when you wake up in the middle of the night, worrying about what’s to come, the financial hurdles, the shifting roles. Life surely changes after a diagnosis. It does for the patient. It does for the caregiver. Love becomes more complicated, intimacy more challenging, patience more ephemeral. … We know the time we have now is precious. The good and the bad, it’s all we have. So, lover, mother, nursemaid, nag, we caregivers are lost somewhere, floating in and out among our many, often conflicting, roles. While love can be ever so much more challenging in these times, it can also be richer, deeper, and more mature. And in our best moments, there is joy in that. Touch becomes the language between us."

A part of me left when Rob died, as has happened when other close friends have passed from dementia, which continues to advance on me. There’s a part of me that at times feels in some ways like the last man standing among close friends who have been on this serpentine journey. I’ve lost a maternal grandfather, mother, and a paternal uncle to Alzheimer’s, and before my father’s death, he too was diagnosed with dementia. I have been diagnosed with prostate cancer that I’m not treating, spinal stenosis, scoliosis, little feeling in both feet to my knees, severe depression to the point of flirting with leaving the planet twice, a body that often collapses without notice, and three serious head traumas, in addition to other concussions over the years. Yet I’m still standing. There’s an Irish guilt in me. In my journey, I’ve written firsthand—as a window into dementia to others—about the progressions and the faith, hope and humor needed to sustain the path. The grace of God and my training as a journalist has sustained me in this, my nightmare journey.

At the start of the year, I wondered if I should keep writing, if anyone cared, if I should pack it in, stand on a street corner and wait for the dementia bus to hit me. I felt it might be time.

And so, I had coffee with Margaret the other day to talk about this. She didn’t mince her words.

“I’m not sure I would have liked you before your disease,” she said, staring at me with intent that might have burned my retinas if I hadn’t blinked. “You have the trace of someone who is arrogant, self-absorbed, full of ego, and proud to the point of being impenetrable in some ways. Men like this annoy me. I imagine that at one time you were the kind of man who would have turned me off for so many reasons.”

She paused. I was waiting for another shoe to drop, hoping I was a centipede.

“But, that’s why you are not dead yet,” she added. “Those very same Irish character traits are why you’re alive and making a singular impact on the fragmented world of Alzheimer’s. You have learned how to adapt to a failing memory, to retaining as much as you can, to compensate with strategies that very successful men often don’t have to do. …You can’t stop writing. You can’t. You’re not afraid, you know what needs to be said, and you don’t give a damn about saying it. That’s your calling, don’t screw it up. You’re more approachable now, more kind, more caring. Dementia has taken much from you, but God/the Universe has given back. You’ve grown as a human.”

I was stunned. In her soul-penetrating words, she had mastered “Irish Diplomacy,” the ability to tell someone to go to hell so they look forward to the trip. But Margaret is a close friend, whom I care deeply about, and I took her words to heart, as she had taken them to her soul.

Margaret, a great encouragement to my wife Mary Catherine, is writing now, following her own advice. She’s at work on a manuscript about caregiving, called, “Roads Lost In Drifting Snow.” She hopes her firsthand writing as a caregiver opens doors for others.

“That’s why we’re here,” she tells me. “We’re here to open doors in life as we can.

None of us are heroes.  We’re just bellmen and women.”   

She writes in her manuscript: “I’m so filled with sadness and fear. Maybe that’s my way. Allow the sadness and grief to just ‘be,’ trusting it’s absolutely warranted, but at the same time does not serve me well. I pledge to find the beauty in each day—a shaft of sunlight through a tree’s black limbs, a salmon sunset, a marsh at high tide, an explosion of red leaves still clinging to a branch. All these things I can force myself to tend to, and slowly, my heart will return to life.”

Margaret’s life burns bright. She’s a model in so many ways for all of us to follow.