CAMBRIDGE — The couple walk shoulder to shoulder, stride for stride, like two people who have walked together a long time. The man looks steadily ahead and moves with purpose. The woman turns to him, smiling, and speaks quietly.
He nods his head slightly but does not reply.
His silence would have once surprised her, but it is expected now, painfully familiar, four years into their life with Alzheimer’s. The great man at her side goes days sometimes without speaking. She isn’t certain, now, if he knows her name, or if he always recalls his own.
His name is Charles J. Ogletree Jr., and he was, not long ago, a dazzling, dominating legal mind, a theorist and scholar internationally revered for his brilliance and compassion. He inspired generations of students as a Harvard Law School professor, including the young Barack and Michelle Obama. He was a crusader for civil rights, the founder of the Charles Hamilton Houston Institute for Race and Justice, and a prolific author who investigated police conduct in black communities and the role of race in capital punishment, long before the rise of the Black Lives Matter movement.
For decades, his schedule was booked solid; there were weeks when his wife, Pam, barely saw him. He gave speeches around the world, and offered guidance at historic moments, as when apartheid ended in South Africa and he helped to draft that country’s brand-new constitution. He mentored young lawyers, analyzed high-profile cases on national TV, and still somehow found time for pro bono casework, aiding unknown defendants in gritty Boston courts.
He was only 60 when his wife began to notice subtle changes in his speech. He was 62 when he was diagnosed with Alzheimer’s disease. Three years ago, at 63, Ogletree went public with his battle. He named his nemesis and vowed to fight it, the way he’d fought injustices so many times before. He is fighting still, holding onto what is left. But so much of who he was has been taken from him: Reading and writing. Traveling the world. Debate and discussion and his first great passion, fishing.
RELATED: A Globe reporter shares how she told the Ogletrees’ story
The losses happen without ceremony. One day things are possible, another they are gone.
They had told themselves they would not dwell on that. “I want to focus on what I have,” Charles told Pam when he was diagnosed, “not on what I’m losing, or on what I had.” They pledged to stay in the moment, savor it. To spend their time living.
And so as his world closes in, she pushes back. She plays the music he loved, tells him the old stories. In almost any kind of weather, they go walking. Charles always liked to walk, she says, but now he walks as if his life depends on it.
They have walked together by the sea at World’s End in Hingham, and on flat sand beaches in Nahant and Duxbury. They walked at Great Meadows in Concord, and beside the granite ledges on Rockport’s Halibut Point. Charles’s pace has slowed in recent years; he might drag a leg, or stumble. Still, he presses on, walking 2 miles, 3 miles, 4.
Pam lets him set the pace, and she stays beside him. She marvels at his will and determination. For all he has surrendered, his walk still concedes nothing. He walks like a man trying to get somewhere.
. . .
FROM THE FIRST DAYS of their acquaintance, she could see how it would be: Charles the bright light at the center of the room, drawing people in and bringing them together. As soon as they arrived at Stanford University for their freshman year, he began to stand out as a leader. Pam admired his ease with people, the way he seemed to throw his arms around every one of the 70 black students in their class of 1,500, making each feel special. She was so different from him, so introverted and reserved, it thrilled her to be pulled into his lively circle, where they were good friends before becoming something more.
It was 1971 when they met as freshmen. Pamela Barnes had been a top student at Compton High School, in Southern California. Charles had grown up desperately poor in the segregated town of Merced, Calif., where his father, a farmhand, had a fifth-grade education. When a high school guidance counselor recognized Charles’s potential, and encouraged him to apply to Stanford, the young man resisted. He had never heard of the campus two hours from his home and thought the counselor meant the town of Stamford, in Connecticut.
Once enrolled, he quickly came into his own. He cut a bold figure, with his flat hat and colorful clothes, Pam recalled, and he was soon involved in everything, editing a student newspaper, joining the student government, and organizing activists to protest the trial of Angela Davis. It was there, closely watching the famous case unfold, that he first became transfixed by legal strategies and arguments. Later, as he considered where to continue his studies, it was Pam who urged him to apply to Harvard Law School.
RELATED: What is it like to be poor at an Ivy League school?
Their life together followed the path of his career, first in Cambridge, where he graduated from Harvard Law in 1978, then in Washington, D.C., where he won cases and a stellar reputation as a public defender in the 1980s, and finally back in Cambridge again when he was hired to teach at Harvard. They had two children, a son and a daughter. Pam earned an MBA and had her own career, running academic enrichment programs, launching a charter school, and later, serving as president and CEO at the nonprofit agency Children’s Services of Roxbury.
Her work for disadvantaged families went on quietly. Charles, meanwhile, became a kind of intellectual celebrity in the 1990s, a sought-after TV legal analyst who once predicted O.J. Simpson’s acquittal. He investigated Supreme Court nominee Clarence Thomas for the NAACP, and represented Anita Hill during Thomas’s ground-shifting 1991 Senate confirmation hearings. When friends and colleagues asked for help, he always said yes, his wife said, in keeping with his belief that he had been blessed, and should strive to give back.
He still squeezed in Boy Scout camping trips with his son, and fishing trips with old friends on Martha’s Vineyard. At the pinnacle of his career, his wife said, “there was so much going on, so many people around him. . . . It was hard, sometimes, to even know him.”
RELATED: Many valedictorians of Boston public schools struggle to make a middle class income
Pam always imagined things would slow down one day. The requests would come less frequently, his schedule would ease, and they would have more quiet time together.
She never imagined that when they did, the man she loved would already be slipping away.
. . .
THE DAY THEY first were told that Charles had Alzheimer’s disease, in May 2015, the couple was so flattened by the blow, it was hours before they could speak about it. The meeting at Beth Israel Deaconess Medical Center in Boston felt “like surgery without the benefit of anesthesia,” Pam later wrote in her journal. “There were no buffers . . . no words of hopefulness, just blunt, sharp words like ‘widespread cognitive decline.’ ” The clinician offered no treatment possibilities, Pam recalled.
For a year or two, Pam and other family members had observed small changes in Charles, memory gaps and shifts in the complexity of his language, most pronounced when he was tired or stressed. Like most people, they thought Alzheimer’s struck older people, in their 70s and 80s. Charles seemed still in his prime, so devoted to his work he had never thought of stopping. On sabbatical that spring, he was preparing to write another book, Pam says, this time about the Obama presidency.
RELATED: Unbowed: A generation of black youth in America struggle with Obama’s legacy and their future
She had pushed him to undergo the extensive cognitive testing that led to his diagnosis out of concern that something might be wrong. But she had never thought it could be Alzheimer’s, a disease with no cure, and few prospects even for new drugs to ease its symptoms. Both Ogletrees struggled to accept the outcome and sought a second opinion at Mount Auburn Hospital in Cambridge in late 2015. Those tests confirmed the first finding, devastating them again.
The future loomed suddenly before them as a threat. Pam left her job soon after his diagnosis, determined to make the most of their time together. Charles kept working, and struggled with denial, Pam said. Concerned that he was overburdening himself, she encouraged him to be more open about his condition, and by the summer of 2016, he was ready to speak publicly. Announcing his Alzheimer’s diagnosis for the first time at a national church conference, he said his deeply rooted, lifelong faith in God allowed him to feel grateful instead of angry.
“I want to be a spokesperson,” he told the Globe at the time. “I want to tell people, don’t be afraid of it.”
RELATED: Gladiator: Aaron Hernandez and Football, Inc.
This was something else he could do for others, challenging the shame and stigma of brain illness. But it was a relief for him, too, to let the truth come out, says Pam. He didn’t have to fight so hard anymore to hide what was happening to his famous mind.
. . .
PAM HAD MOVED THEM toward acceptance, but that did not mean they would surrender to the illness. She had prayed long and hard to find direction, and found something that felt like an answer. An online ad led her to a West Coast Alzheimer’s expert, Dr. Dale Bredesen, who championed a holistic treatment regimen for his patients. He believed the roots of Alzheimer’s lay in a complex web of interconnected factors, not simply from protein fragments, or “plaque” that built up in the brain. Bredesen claimed some patients could gain back lost ground by overhauling their diet and exercise habits, and by addressing their past exposure to toxins.
The key to success under Bredesen’s plan is early treatment, even before symptoms become evident. Charles Ogletree was well beyond that point. But the couple craved some means of fighting back, and some way to fuel their days with optimism. By early 2017, they had gone all in with Bredesen, signing up for blood screenings and a costly four-day retreat where they were schooled in the use of physical activity and a ketogenic diet, which largely cuts out carbohydrates and replaces them with fat, to trigger the body’s natural defenses.
At the retreat, alongside other families, the Ogletrees were flooded with relief. “Charles would go up to the front of the class every day and take copious notes,” Pam said. “He was so motivated, and so hopeful to be on a path.” Back at home, he started work with a personal trainer while she took charge in the kitchen, stripping their diet of sugar and processed foods. Determined to try every way they could to fight his symptoms, they tested their home’s air quality, and removed mold from their basement.
In her journal from those months, Pam recorded the progress she saw: a resurgence of Charles’s personality, his optimism and outgoing nature that had waned. He engaged with people more, she says, joked with them, and began to talk about a wider range of subjects.
RELATED: The life and times of Strider Wolf
That upturn, she says, was worth every step they’d taken. Yet they understood that his disease would not be vanquished. Cruelly, it reared up after a lull, as if to remind them of its silent progress. In June 2017, on a nine-day trip to Italy with Pam, Charles was gloriously happy, she recalled, drinking in every word of history and culture. In Venice on the last day of the tour, Pam paused to photograph a picturesque canal. When she turned back to their group, Charles was gone.
For 14 hours, Pam searched the storied city, combing through the twists and turns of its maze-like alleys. She called police, her children, the embassy; she felt numb with terror as night fell. Finally, near the bus station, their guide found him — sitting on a bench, shopping bags nearby, calm but with a vaguely worried air.
Flying home to Boston the next day, Pam grieved silently for another loss: She knew, after what had happened, this would be their last trip overseas together.
. . .
WHAT SHE NOW WANTS most is to keep him close: to care for him at home for as long as she can manage.
For the moment, it seems within her grasp. Most of the time, he is easygoing, though there are restless mornings when he paces through the house, flipping switches on and off, trying to escape an unease he cannot name.
RELATED: Scientists close in on blood test for Alzheimer’s
Pam knows how quickly things can change. There was a time, late last year, when she thought she might have to let him go, to live in a place with more support, after his symptoms took a brief aggressive turn. Cooking dinner in their kitchen one evening last December, on a day when she could tell he was unsettled, she was startled when he pushed her, knocking over a jar, and then swung a hand at her when she asked him to stop. Alarmed, she called 911.
The responding officers spoke quietly to Charles, calmly asking him to come with them to the hospital. He resisted and was physically combative. In the hallway, overcome by fear and guilt, Pam could not bear to watch as the officers restrained her husband. At Cambridge Hospital, where he was confused but calm, they spent four days in the emergency room, waiting for a bed to open up at McLean Hospital in Belmont. Doctors there adjusted his medication, and the aggression disappeared, allowing him to go home again.
It felt to Pam like a reprieve, and she tried, in its wake, to anchor herself even more firmly in the present.
RELATED: Could a simple eye exam detect signs of Alzheimer’s disease?
They still pray together many mornings, Pam kneeling on a sofa cushion on the floor in the living room while Charles sits and listens on the couch beside her. He no longer pipes up with addenda to her prayers, but he seems attentive, even calmed by what she says.
In the beginning, she prayed for him to get better. Now she prays more often for acceptance.
For a long while, he resisted his growing dependence on her, for simple tasks like washing and dressing that had so long been his own. In time he gave in to that change, too — that they would do these things together now, as they had done so much else, for almost 50 years.
Pam welcomed his acquiescence, but it scared her, too. “If he comes to a point where he’s completely peaceful . . . ”
She paused in their quiet living room in Cambridge, morning sunlight falling on her face.
“I’m trying to hold onto him for as long as I can.”
It is impossible to be sure how much he remembers, or what is left of his sense of self. Sometimes she reminds him, playfully. “I know you!” she exclaims, her voice warm and bright. “You’re Charles James Ogletree, from Merced, California!” He might look her way, or nod in response. But she thinks his name, and hers, are often lost to him.
Something else remains, though, that matters more to her: He knows who she is to him, and has always been. The one who loves him and takes care of him. The one who is always there beside him, when he falls asleep at night and wakes up in the morning.
. . .
THE TRAITS THAT define her husband are still there, the compassion and empathy and sociability. Pam knows this because she sees it for herself, brilliant flashes of Charles’s old self emerging.
One afternoon last spring, when Pam picked him up at his day program, he noticed a young man in the parking lot beside them, helping his father into the car.
Charles rolled down his window and spoke to the young stranger. “You’re doing a great job,” he told him kindly.
Pam was startled, but the gesture was familiar. “That was always Charles,” she said. “Always encouraging people.”
Friends came rarely, but a few had stayed with them. They called sometimes and spoke to Charles as he mostly listened. His dearest friend had visited last March, unsure if Charles would know him. But Charles lit up and hugged him, both in tears. “You and I go way back,” Charles said. “We fished together.”
RELATED: New dementia care approaches are emerging to support patients and families as drugs falter
Pam lives for those extraordinary, unexpected moments. When he allows her to hug him, or smiles, it feels like a gift. One night this fall, he turned to her abruptly. “Are you all right?” he asked with concern. “I just want to make sure you’re all right.”
“You’re a tough woman,” he told her another day, in a tone that was clearly complimentary.
She copies his infrequent words down in her journal, sustenance to nourish her in the silences. Sometimes, the notes have an ominous quality, as when he noticed a cemetery one day. “Dead people are over there,” he said. Then he hugged his wife. “You’ll be all right,” he told her.
They tried, last winter, to fly south to visit their daughter in Maryland, but the prospect of the airport security check proved too much for Charles, upsetting him so badly they had to abandon the trip. After that — and after he went missing again, more than once, out for a walk on his own before she could stop him — she knew it was time to consider leaving Cambridge. The pretty yellow house where they had lived for 30 years was a comfort, with his favorite chair, familiar neighbors, and his favorite breakfast place around the corner. But it was also a constant reminder of the past — the setting for a life they had long since left behind.
Pam closed on a new house in August, in Maryland near their daughter and young granddaughter, and began the overwhelming task of packing up. It felt, some days, almost impossible. When she tried to sort through Charles’s library, containing hundreds of books, to choose those that could be discarded, she found volume after volume — 150 in all — lovingly inscribed by their authors to her husband.
By mid-October, she had thinned their possessions. Boxes stood stacked against the walls, ready for their November departure. She knew Charles sensed the upheaval ahead, and she knew it would be hard on him. She prayed the things she sought in their new home would help him, too: the closeness of loved ones, the awakening of a fresh start, and beautiful new places for them to go and walk.
. . .
THEIR TIME FOR WALKS near home is dwindling. So on a cloudy, windy Wednesday afternoon this month, they headed out from their house in Cambridge to nearby Danehy Park, one of their favorite walking spots.
Charles wore blue jeans, a gray fleece pullover, and a Dallas Cowboys baseball cap. He looked fit and trim and his pace was steady. Inside the park, pathways branched in several directions. “Sweetheart,” Pam asked him, “do you want to go this way?” But he had chosen his path already, bearing right and up a gentle slope without a word.
Here, on their walks, he could still take the lead. In most other places, it was difficult. He still wanted to buy things for himself, at the food stands where they sometimes stopped on weekend drives or the Shaw’s supermarket near their house. But clerks grew impatient when he became confused. Pam could step in to smooth things over, but that pained her, too; it felt like taking more of his personhood from him.
She wished the world understood his illness better. Everyone knew cancer patients might lose their hair, or become nauseous or exhausted. No one seemed to understand Charles when his disease flared into view, when he grew agitated at the airport, or forgot how to pay for his own protein bar.
There was so much darkness in his world, she craved the moments when she saw him happy. Several times during the summer — in flagrant violation of their ketogenic diet — she brought him a scoop of vegan strawberry ice cream from a shop in nearby Porter Square. He savored every spoonful, scraped the bowl clean, and clutched the empty paper cup in his hand all night.
Months later, the memory of his rapture was still enough to move his wife to tears.
She walked beside him now through the park in Cambridge, past toddlers twirling on the playground and teenagers giggling on a bench. He tucked his hands into his pockets, his face expressionless. She talked to him about their children and grandchildren, and pointed out a tree resplendent in its autumn yellows.
What they have now is different, and some would say poorer, but to Pam it is in some ways purer. Everything superfluous has gone away — all posturing and ego; the petty resentments common to all marriages, leaving a connection deeper and truer than language.
“It feels like I love him more now,” she said one day this fall.
In the park, the wind was rising, the silvery sun no longer burning through the clouds. Sirens passed, above the chirp of crickets, as Pam asked Charles if it was time to go and find the car. No, came his unspoken answer, as he kept on walking; he was not ready yet to stop.
They turned back into the park together. She put her arm in his as they headed uphill.
Jenna Russell can be reached at firstname.lastname@example.org. Follow her on Twitter @jrussglobe.