Redefining Love and Courage In Times of Duress

Source: (From left) Mike Belleville, Ken Sullivan, and Greg O’Brien, all diagnosed with Alzheimer’s, sharing a meal together in 2015 south of Boston. Used with permission of Greg O’Brien.

At the mouth of Hingham Harbor, just south of Boston, one can hear the orderly slap of halyards against the tall aluminum masts of sailboats launched early in the season. A raw wind is blowing from the southeast, and the bump of vessels against the dock has the beat of war drums.

Months ago, inside the nearby rustic Trident Gallery and Raw Bar, sat Ken Sullivan and his wife, Michelle Palomera, successful financial services and technology professionals in their own right. At first glance, they appear to be the impeccable couple. To some degree, they have the look of “Ken and Barbie,” perfectly formed Mattel dolls of the 1960s. Ken, 51, is handsome, athletic-looking, and erudite, his age belied by premature gray hair. Michelle, 49, is the picture of beauty and intelligence, inside and out. Yet the war drums are beating.

My buddy Ken, “Sully” to his friends, is not on his game today. He was diagnosed with Alzheimer’s in 2013 at age 47, after an MRI and battery of neurological tests—at a time when daughters Abby and Leah were 8 and 6 respectively, further testimony to the fact that Alzheimer’s is not your grandfather’s disease. Still handsome—athletic-looking, and with the same disarming smile, Ken’s acumen this day stops there. His progressions have moved exceedingly quickly: loss of memory, loss of self, dislocation, inability to process noise, and other symptoms, all batting down yet another stereotype of the disease—predictability of the advancement of Alzheimer’s.

In March 2016, at the age of 50, Ken was moved on the recommendation of his doctors, into a caring assisted-living complex, Bridges By Epoch, across from the Trident; the demons had chased him there from his stately home in Scituate, on the south coast of Boston. Home was no longer an option. Care for Ken would now cost $10,000-a-month, plus other expenses. In a wink, half of the family income was gone. Alzheimer’s doesn’t respect demographics of any sort.

“The decision to place Ken in assisted living was excruciating for me and the girls, but Ken in his disease seemed good with it,” says Michelle, outside her husband’s earshot. “I felt terrible, confused, heartbroken, and angry, but I knew all along it was the best thing for him.”

Coordinating with Ken’s doctors, the decision was made in the dead of winter. “That weekend I was alone,” she recalls. “I mean alone. The kids were out of town, and Ken was in the hospital recovering from efforts to adjust his medications. I had time by myself; it was cathartic, a moment to grieve and process what was happening to my husband in his prime. It was really hard.”

She pauses.

“Still is…”

Early on, there were premonitions on the horizon. The year after Ken was diagnosed, he attended an Alzheimer’s research event in Boston, still with the intuition of a bright analyst. He came away with a business card that he handed to his young wife; it was from the director of Bridges By Epoch. “If and when the time ever comes,” he told Michelle, unable to complete the sentence in his emotion. “I want you to check this place out, but I don’t want to talk about it now…”

Today, there’s not much to talk about.

Ken and Michelle met at Fidelity Investments in Boston, where they worked many years ago. In time, they dated, married, and moved on to analyst jobs elsewhere in the Hub, joined at the hip forever. But over time, there were troubling signs. Ken began having difficulty with the numbers; he began struggling at his job. The math, the executive left side of the brain, wasn’t computing for him. He was feeling intense stress, confusion, anxiety, and wanted to pull back, sought to withdraw. And so, he was let go before his diagnosis. Who, in the moment, could understand? His employer, after the fact, was highly supportive and cooperative.

At age 47 with two young daughters, Ken searched for other work. There were no takers. No one was surprised, least of all Michelle, then 45 years old, a superstar of a woman, who became the sole provider and the caregiver. Lots of juggling with her husband and children, no complaining. Not the life she had imagined. Their income had been cut in half in a blink; the cost of care and ancillary, out-of-pocket expenses dug the hole deeper. Then there is saving for the girls’ college. Alzheimer’s respects no stock portfolios, not a race, a color, a preference, or a gender. The disease is an equalizer. Yet Ken was steadfast in his courage, love and perseverance; as an advocate for the Alzheimer’s Association, he served as a National Early Stage Advisor and spoke on Capitol Hill and elsewhere to increase awareness of the disease and greater funding for a cure.   

“Ken told me when I first met him that this disease affects us all in different ways, but urged me to stay busy and to stay positive, says Mike Belleville, a close friend, who suffers from Alzheimer’s as well. “Kind to the core, Ken always made time for those in need.”

At the Trident Gallery and Raw Bar, the conversation this day was to the point. “I’m so sad,” says Michelle, tearing up, yet fighting off the sentiment, while dealing with her own depression and stress of caregiving. “There are so many layers to this disease, affecting individuals in so many different ways.”

Adds Ken from the heart, “I’ve just had to let it go.” He reaches gently for Michelle’s hand. “You ok, honey? I love you!”  

She smiles, the gaze of a loving partner. “I love you, too…”

Back at Epoch around the corner from Trident, Ken shows me his room. I cried that day when I entered; I cried for Ken and for all of us in this disease. Walking through the lobby of the nursing home complex, Ken turned heads, only now they were 80-year-olds. He takes it all in stride, perhaps unaware of the variance in age. His room has a boyish look to it; sports memorabilia abounds: his baseball mitt; a prized National Hockey League stick signed by the Stanley Cup-winning Bruins team, led by Bobby Orr; a framed larger-than-life high school photo of Ken, a sturdy lineman, Number 73; watercolor paintings he has done at Epoch to keep the creative juices flowing; and other sports memorabilia from his football and baseball days. He was an infielder, pitcher, and catcher.

“Catchers control the game,” Michelle interjects, a reference to Ken’s attempts to backstop Alzheimer’s.

And then there’s a framed front page of the Boston Globe celebrating the Boston Red Sox World Series championship that broke an 86-year-old drought, putting the “Curse of the Bambino” to rest. Proudly, “Bad Boy Ken,” as Michelle calls him, caught a St. Louis Cardinal home run ball in the series, threw it back onto the field at Fenway Park, and was ejected from the park for bad behavior.

“I made the paper!” Ken exclaims.

There’s a knock at Ken’s door—Paul and Susan Boyce, longtime close friends, who have “adopted” Ken, Michelle, and the girls. Ken and Paul, who lost his grandmother and mother to Lewy Body Dementia, have known each other for fifteen years. Paul, born outside London and sailed for Britain in the America’s Cup Race of 1987 while holding off Australia, knows much about navigating hazardous currents. He tells me privately, “If you’d want anyone in your corner for this, it would be Michelle. There is a bottomless component to her. I haven’t seen the bottom yet of her ability to deal with this disease, but I worry about it. She’s a hero.”

Paul, with two girls of his own, has tremendous admiration for Ken’s fight, and relates on so many personal levels to the sadness of Ken living outside the family. “I get to hug my two daughters in the morning, and Ken doesn’t,” Paul says in the simplest of contrasts. “That’s not fair.”

They used to talk about the “fairness” of Alzheimer’s over a few beers at a local tavern right after Ken’s diagnosis, when he was fully in the moment. Like the final scene in the movie Charly, adapted from the book Flowers for Algernon, they talked about the day when Ken will not recognize Paul.

“You won’t see it coming,” Paul told him. “But I will.”

“I know,” Ken replied. “I’ll just be along for the ride…”

Postscript: Fast forward a year. Perhaps Ken didn’t see it coming last week as he passed away after a valiant, bruising battle against Alzheimer’s. But Ken took us all on a gripping ride of courage, gut perseverance, and Irish humor. His devoted wife, Michelle, and two daughters redefined selfless love in ways that many of us will never know. Godspeed, Ken. Safe sailing. The Halyards at Hingham Harbor slap in salute to you. Love, O’B.

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