Three geese in a flock.
One flew east, one flew west,
One flew over the cuckoo’s nest.
“Man, when you lose your laugh, you lose your footing,” wrote Ken Kesey, author of the iconic, pioneering 1962 novel One Flew Over the Cuckoo’s Nest.
Kesey never lost his footing in his finest work, writing of the misunderstood and the struggle against the system, adapting personal experiences from working the night shift in a psychiatric ward at a mental institution. Kesey never accepted that the patients were insane, but instead that the world had cast them out, given they did not meet conformist standards of behavior.
Cuckoo’s Nest was adapted on Broadway and in 1975 made into a film, with a young Jack Nicholson in the lead, which won five Academy Awards. Eighteen years later the film was deemed “culturally, historically, or aesthetically significant” by the United States Library of Congress, and for preservation in the National Film Registry.
There are compelling parallels between Cuckoo’s Nest and Alzheimer’s and other forms of dementia—in how stereotyping and misunderstanding widen the rift between the observer and the afflicted, and how avoidance, intentional or otherwise, acerbates the delusion between the two, causing greater pain for the stricken.
In the movie, Nicholson’s character, the rebellious Randall Patrick McMurphy, a swaggering personality of a convict looking for an easy way out, becomes a symbol of freedom, instilling courage, confidence, and self-esteem in the patients around him. His insurgent conduct deeply annoys ward captain Nurse Ratched, a symbol of the system who intimidates patients with demoralizing passive-aggressiveness. Her discipline heightens as McMurphy teaches patients to bet cigarettes in playing cards; then steals a hospital bus, escaping with some patients for a fishing trip; then throws a surprise Christmas party on the ward. McMurphy becomes a role model to his diffident followers, among them Billy Bibbit, a terrified thirty-one-year-old man with the mindset of an adolescent; Scanlon, a patient with ruinous delusions; the playful, loveable Martini; and Chief Bromden, son of the chief of the Columbia Indians who leaves others with the impression that he cannot hear or speak; and others.
“Which one of you nuts has got any guts?” McMurphy challenges them.
They all answered the call, as many do in disease.
My close friends in dementia, from all walks in life, have answered the call in fighting the demon that plagues us. They got great guts in educating and breaking down the stereotypes of this disease.
“Everyone is petrified of Alzheimer’s, to the point of not wanting to contemplate it. And rightly so. It is existentially—and uniquely—horrifying,” David Shenk wrote recently in a Wall Street Journal review of British neurologist Joseph Jebelli’s fine work, In Pursuit of Alzheimer’s. “The situation has become dire. The baby boomers are now drifting into the most risk-prone years. Alzheimer’s has become the fourth-largest killer in the U.S.—and the only one of those four still on the incline.” Quoting from Jebelli’s book, Shenk, author of The Forgetting, a national bestseller, adds, “It’s time to wake up.”
Indeed it is, as we head into 2018 in the face of a 21st century scourge of biblical proportions. Notes the Wall Street Journal review, “Between 2000 and 2012, nearly100 percent of therapies for Alzheimer’s ended in failure.” Yet today many overly sanguine individuals are talking about the end of Alzheimer’s in a tone akin to President George W. Bush in 2003 waving a "thumbs-up" after declaring the end of major combat in Iraq, speaking aboard the aircraft carrier USS Abraham Lincoln, decorated with a banner: “Mission Accomplished.”
Not even close. Nor is the battle over Alzheimer’s and other forms of dementia. You gotta laugh.
“You have to laugh at the things that hurt you,” writes Kesey in Cuckoo’s Nest, “just to keep yourself in balance, just to keep the world from running you plumb crazy.”
Brian LeBlanc, plumb crazy in all good ways, sees himself as a modern-day Randall Patrick Murphy in his struggle against Alzheimer’s.
“I’m definitely Randle McMurphy, though in nonviolent ways,” LeBlanc, diagnosed with Early Onset Alzheimer’s in 2014 at age 54 and fully symptomatic, tells me in an interview from Pensacola, Florida, where he lives with his wife, Shannon. “I’m thinking I’m not crazy, but yes, to some extent I am…McMurphy witnessed how patients were being treated, and he wanted, in his own way, to see them have a better quality of life, rather than suffering. Makes me think of the stigmatization of dementia. Just because we have a terminal disease doesn’t mean we can’t have a good quality of life, doesn’t mean we have to stop living.”
Still, LeBlanc’s road is rife with twists and turns. Brian, with a similar family tree as me, has lost his grandfather, his grandmother, and his mother to Alzheimer’s, and his dad passed away of Vascular Dementia. Brian also has two copies of the Alzheimer’s marker gene APOE-4. His life, like the rest of us on this journey, has become a daily strategy session; sticky note reminders cover his desk at home like a patchwork quilt, and the markings on his calendar look like an old-school football chalkboard with X’s, O’s and arrows, pointing in all directions, outlining the plays of the day. Looming finances are also a common and mounting issue. “The disease takes family finances down, and puts tremendous stress on a couple, changing the dynamic of a marriage,” says Brian, active with the Alzheimer’s Association and an advocate for Dementia Alliance International-Global, among other such organizations.
Then there is the rage that many of us deal with.
“The rage,” says Brian, “comes on when things I was very familiar with I can no longer figure out, like the television remote. I only wish they made remotes out of rubber instead of plastic, so when hurl it in anger at the brick fireplace, it doesn’t smash into pieces.”
“Until one is able to get inside the mind of Alzheimer’s, living with the disease, no one can fully understand it. In the past, we’ve allowed the experts, the doctors, and society all to speak for us. Now we’re speaking for ourselves. It’s open, honest, and raw.”
Sunday is a time of redemption for Rev. Cynthia Huling Hummel as she stands in the pulpit of a Presbyterian church in upstate New York, carefully delivering prepared homilies from copious notes. On a recent Sunday, she turned to the next page of her sermon, and it was blank. Just blank. White as snow.
“You can’t swear in church,” she tells me later, noting she had forgotten to bring the entire sermon with her. It has happened many times.
And so she looked toward Heaven, and just rolled with it, edifying the congregation in an ad-libbed sermon about the resurrection of Christ and how the angel instructed Mary Magdalene: “Go and tell his disciples.”
“Now who are you going to tell?” Cynthia said in conclusion of her sermon, without signaling angst.
Recalling the moment, she says the homily that day was “a bit shorter” than usual, but that she “stuck the landing” like a good gymnast. “OK, Lord,” she prayed quietly, “you gotta help. I’m here doing the best I can.”
Prayers were answered. But for Cynthia these days, “the best I can,” is a moving target. Having been diagnosed with Alzheimer’s, a disease that took her mother, she, too, has great guts. After an onset of symptoms—memory loss and forgetting familiar faces and places, including getting lost on her way to a burial ceremony with the family waiting for her at the cemetery plot—she stepped down years ago as a full-time pastor, and now substitutes in the pulpit at various churches.
“I slough through old sermons,” says Cynthia, 63, a mother of two, with a grandchild on the way.
At first, Cynthia, who grew up in street-smart central New Jersey, tried to camouflage her disease, then her formal diagnosis tested her faith.
“A woman at church one day told me, “God is scraping your plate, preparing room for you to do something else.”
“REALLY?” Cynthia replied sarcastically to the woman. She didn’t want to hear it, but eventually accepted her journey in trust.
Now, she says, her ministry has taken a new direction, witnessing to those with Alzheimer’s, through her ministry, the Alzheimer’s Association, as a member of an advisory council of the U.S. Department of Health and Human Services, and singing in a band called “Country Magic,” which has been inducted into the New York State Country Music Hall of Fame. It has been a chorus of redemption for her.
My friend Mike Belleville sees himself as the taciturn “Chief” in the ward with Randall Patrick McMurphy. Yet I see Belleville as the innocent, fun-loving, affable Martini, the caring, bear cub of a man in Cuckoo’s Nest who loved just hanging out. Remember the scene in the hospital ward playing cards with McMurphy and the other patients:
Martini, after ripping cigarette in half: “I bet a nickel.”
McMurphy: “Dime’s the limit, Martini.”
Martini, putting the two halves of the cigarette in the center of the table: “I bet a dime.”
McMurphy: “This is not a dime!” After showing Martini a full cigarette, adds: “THIS is a dime!”
McMurphy then says: “If you break it in half, you don’t get two nickels, you get shit! Try and smoke it. You understand?
McMurphy: You don’t understand.
Belleville, like Martini, has had to put up with a lot of crap in his life, now more than ever. And yes, he does understand.
It was an ordeal recently getting his young grandchildren to understand a change of plans for Thanksgiving. Mike, 56, who lives with his wife, Cheryl, outside Boston, has been diagnosed with Early Onset Alzheimer’s. Noise is an intensifying issue for him. Simply put, he can’t process noise, too thrashing for him. And thus he withdraws, as most of us do. Thanksgiving, a time of family gathering, is a bruising time to withdraw.
So Mike and Cheryl decided in a family conference with their two grown daughters (Monika and Krystal, both married, with two children each) to have separate Thanksgivings a day apart, or Mike would have to sit this one out—too much noise, too much confusion. It was painful for Mike and wrenching for the grandkids who call him “Pappy,” but that’s what this disease does. It robs; in this case, a bifurcated Thanksgiving. It’s sad, but it’s the art of compromise under such circumstances. So Mike and Cheryl spent Thanksgiving with Krystal and her family in Rhode Island on Thanksgiving Day, and with Monika and her family in Boston the day after.
“It tore me up, knowing it was all my fault,” says Mike. “When we arrived at Krystal’s, her children asked why their cousins weren’t coming for Thanksgiving; they wanted to spend the day with the entire family. Broke my heart. I’m supposed to be the father, the patriarch, and now I’m the guy who can’t filter noise, who withdraws. It’s disturbing to me. I don’t want to take time away from them…yet I feel I’m robbing them of time.”
Still, even with a separated Thanksgiving, Mike had to take time outs, heading outside alone for a break, or “wearing ear plugs.”
Married for 36 years, Mike is now on disability. He stays at home, a prisoner most days in his own house, while Cheryl works full-time as an administrative assistant for a data processing firm. At home, Mike ponders his future, knowing it holds little promise. “What scares me the most is that I will turn into someone who is not a pleasant person. The last thing I want to do is to hurt myself or someone else.”
Active in the Alzheimer’s Association Massachusetts/New Hampshire branch and a former member of the National Alzheimer’s Association Early Stage Advisory Board, Mike is distraught by the casual “drive-bys,” a hiya-hiya, a gesture akin to someone telling a mute person: “You don’t look like your deaf.”
“Drives me crazy when those in Alzheimer’s fight hard to stay in the moment, instead of laying down, and people think we’re fine,” he says. “They don’t have a clue. They can’t seem to get below the surface or perhaps out of fear, they can’t. Sometimes, I just want to slap them upside the head.”
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.
Inside the nearby rustic Trident Gallery and Raw Bar sits 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. 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 out. Yet the war drums are beating.
My buddy Ken 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 disarming smile, Ken’s acumen today 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 advance 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.”
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…”
Now 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 more 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, who has been an advocate for the Alzheimer’s Association, 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.
At the Trident Gallery and Raw Bar, the conversation today is 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.”
Says 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, selfless partner. “I love you, too…”
Back at Epoch around the corner from Trident, Ken shows me his room. I cried when I entered; I cried for Ken and all of us in this disease. Walking through the lobby of the nursing home complex, Ken still turns heads, only now they are 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 flow of creative juices; 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, breaking an 86-year-old drought and 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 who sailed for Britain in the America’s Cup Race of 1987 held 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 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…”
Early in the morning near Cape Cod Bay, the sun weeks later spills off Paine’s Creek Marsh in West Brewster in a reflection of grace. The marsh envelops nearby historic Wing Island, a 140-acre pristine preserve that rises above the marsh, 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 to fashion spears and arrows.
I’m along for the ride today. At the local Dunkin’ Donuts, near a rolling bend in the road “Betty’s Curve,” I sit with my friend Pat Bertschy, just days after her husband Bob’s death from Alzheimer’s. Bob and I were close, like brothers.
“How are you doing?” she asks.
“Not good,” I reply, thinking about Bob. “Can’t imagine the grief, the loss, the pain, that you’re feeling.”
Her tears flow like currents in the creek.
And so it is with caregivers in this disease. They put life on the line, only to feel the pull of loss far beyond Pluto. In the end, their identity—as guardian, defender, advocate—vanishes in a breath. The stinging loneliness of Alzheimer’s replays like a loop tape in the mind of caregivers. One can’t stop the reprise. What next? What next? There are no decorations or honors bestowed upon them, just intense isolation. Their mission has come to an end, yet they never forget. Caregivers are the heroes of this war.
We talk today about Bob’s fear of death and his courage in accepting the curtain call. She reaches for my hand, thanking me for helping prepare Bob for new horizons.
“I understand now,” she tells me, noting she’s schooled in Kesey’s Cuckoo’s Nest. “I understand your role, I do…You and others been called to open the doors, to kick out the windows, to free souls.”
“You’re the Chief!”
The analogy seeps in, as we talk.
In Kesey’s work, Chief Bromden, the soaring Native American in the ward, has been in the institution the longest. At first, he chooses not to speak, mostly out of fear and intimidation. He uses this as a tactic to deflect. When the Chief regains his voice, he declares, “I felt like I was flying. Free. I’ve been away a long time…”
All of us in this disease wish for the day of flying free.
The Chief, after freeing fellow patients in ways that instilled a measure of self-esteem, normalcy to the extent possible, escapes himself. In the dark of night in a remote section of the ward, he reaches for a heavy granite control panel that he rips from the floor, then races across the room with the panel hoisted high above his head and smashes it through a large window. To the applause of others in the ward, the Chief escapes into the night.
“You had a choice,” writes Kesey. “You could either strain and look at things that appeared in front of you in the fog, painful as it might be, or you could relax and lose yourself.”
Time is fleeting as we begin a new year in fighting this scourge of the 21st century. Far more torchbearers are needed to curse the darkness, to lose themselves.
“Which one of you nuts has got any guts?”
Greg O’Brien’s latest book, “On Pluto: Inside the Mind of Alzheimer’s,” has won the 2015 Beverly Hills International Book Award for Medicine, the 2015 International Book Award for Health, and was an Eric Hoffer International Book Award finalist, as well as a finalist for USA Best Book Awards. An expanded On Pluto edition, New Horizons, will be released in early 2018. O’Brien also is the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. NPR’s “All Things Considered” has run a series about O’Brien’s journey, and PBS/NOVA followed the Pluto journey in its groundbreaking Alzheimer’s documentary, Can Alzheimer’s Be Stopped, among other regional and national interviews. O’Brien has served on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, is a patient advocate for the Cure Alzheimer’s Fund of Boston, and a board member of the distinguished Washington, DC based UsAgainstAlzheimer’s. He is now working with world renowned pediatrician Dr. T. Berry Brazelton on a book about aging and the Last Touchpoint, the journey from the cradle to the grave.