Resisting Alzheimer’s Together
From THE NEW YORK TIMES
IT BEGAN WITH WHAT SHE SAW
in the bathroom mirror. Geri Taylor padded into the shiny bathroom of her New York City apartment and casually checked her reflection. Immediately, she stiffened with fright. She didn’t recognize herself.
That was late 2012. She was 69 years old and had recently retired. For some time, she had experienced the sensation of clouds coming over her. There had been a few hiccups at her job. She was a nurse with a master’s degree in public health who’d moved into administrative positions. Once, she was leading a staff meeting when she realized she had no idea what she was talking about, her mind like a stalled engine. She got past the episode by quickly handing off the meeting to a colleague.
Certain mundane tasks stumped her. She kept pulling the wrong cord on the blind in the bedroom. She got off the subway at 14th Street unable to figure out why she was there.
So yes, she’d had inklings that something was going wrong with her mind. But to not recognize her own face! This was when she had to accept a terrible truth.
She confided her fears to her husband, Jim Taylor, and made an appointment with a neurologist. The doctor listened to her symptoms, took
blood, and gave her a standard cognitive test. She was asked to count backward from 100 in intervals of seven. She had to say the phrase “No ifs, ands, or buts.” He asked her to remember three common words; when he called for them later, she knew only one.
He gave a diagnosis of mild cognitive impairment, a common precursor to Alzheimer’s disease. She understood it was the footfall of what would come. Alzheimer’s had struck her father, an aunt, and a cousin. She had long suspected it would eventually find her.
Alzheimer’s is degenerative, incurable, and democratic in its reach. Worldwide, nearly 44 million people have Alzheimer’s or related dementia. People live with it for eight to ten years on average, though some last for 20 years.
The disease moves in worsening stages to its ungraspable end. That is the familiar face of Alzheimer’s, the withered person with the scrambled mind marooned in a nursing home. But there is also the beginning, the waiting period.
She pictured Alzheimer’s with defiance, through a dispassionate, unblinking lens.
SHE NEVER CRIED
The beginning is like purgatory,” said Geri, an effervescent woman with a round face and a froth of swirling hair. In her health-care career, she had seen Alzheimer’s in action. Now she would live it. Those who learn they have the disease often sink into a piercing black grief. They try to camouflage their symptoms from a dismissive world as they backpedal from life. But Geri pictured Alzheimer’s differently, with defiance and through a dispassionate, unblinking lens.
Crossing into the pitted terrain of Alzheimer’s made her question her purpose. Was she limited to backward glances, or could this be a new beginning?
At first Jim had trouble adjusting. He wouldn’t meet her eyes. To unfreeze the chill between them, Geri gave him a pep talk that put the present in softer perspective. She told him, “This is something that is going to develop, but it hasn’t developed yet.”
Yes, something big had happened. Yet they were still alive. Still together, with more mileage in their future. So they moved forward into their reordered lives.
She couldn’t know the speed of her decline. It is different with everyone. The impact appears to be determined in part by the amount of cognitive reserve each person has, the mental capabilities that one accumulates over a lifetime. She felt she had plenty of that—at least she hoped so.
Her doctor put her on Aricept, a drug designed to improve cognitive performance. It seemed to sharpen her thinking, especially in the morning, but she couldn’t really gauge how much good it did.
Her belief system was optimism. She never cried. Depression, she knew, would lead her down alleys she didn’t want to visit and held nothing for her. Instead, the disease made her hungry for living. She vowed to plunge ahead and accelerate her longtime interest in photography. See friends more. She aimed to live the most fulfilling days she could at what seemed the bleakest possible time.
STRUGGLE TO KEEP UP
J im drew up an Alzheimer’s to-do list, a way to get things started. When to tell the kids and the grandkids. How long to keep the couple’s two homes. Advancing care needs. End-of-life decisions.
Geri was advised not to tell people of her condition: “Friends will fall away from you.” The Taylors didn’t agree. “It was my decision to let the disease be alive in my life,” Geri said. “You don’t have to just throw in the towel.”
They waited six months after her diagnosis. Then, in the summer of 2013, she told the children. They were not surprised. They had detected glitches in her memory, and now they knew their origin.
She postponed informing the grandchildren and moved on to other
relatives and friends. Some accepted the news; others quibbled. One friend combed the Internet for solutions and zeroed in on coconut oil. Geri drank it for a few weeks, detecting no benefit, and then moved on.
Although others could hardly see it, she knew better. She was slipping, the disease whittling away at her. Certain words became irretrievable; sentences refused to come out. Belongings vanished: keys, glasses, earrings. “I know the tide is going out on my memory,” she would say.
She had trouble with time. “The concept of how long it takes to do something has been lost,” she said. Her new best friend was her iphone. She fished it out maybe 20 times a day and scrolled through the calendar and the notes she’d made to herself.
In March 2014, she went to the Caringkind organization in Midtown Manhattan. She enrolled in some programs, including a photography workshop. She signed on for a Memory Works group that engaged in mind exercises. The moderator said the games would not cure anyone or forestall their decline. They were there to have fun.
Name words starting with the letter b. Name foods starting with the letter m. The best part was not having to mask her shortcomings.
The chumminess among these strangers was amazing. “Everyone’s laughing,” she reported, “and everyone is happy they are with people just like them, who can’t get the words out.” Sitting there in the bubbly ambience, she would sometimes think, We shouldn’t be this happy.
It was as if they were all high. High on Alzheimer’s.
COPING STRATEGIES
Geri became watchful when she was walking. Her gait had changed. She felt as if she were weaving, one wrong step away from whirling onto the floor. It was worse when she talked while walking. Once, she stumbled and fell while
conversing with friends. Her new rule: Talk only if necessary while walking.
One day she was driving in upstate New York, and she bumped into another car. Not long after, she was driving with Jim when she came upon some roadwork. A flagman motioned her to stop. Instead, she continued onward, feeling an irresistible urge to speak to the flagman. She couldn’t explain her odd behavior.
That night, Jim suggested that she ought to stop driving, that she was using poor judgment. She lashed out at him, told him he used poor judgment all the time. Drove too fast. Tailgated. But the next day, once the weight of inevitability had settled in, she agreed to cut back and drive only when absolutely necessary.
A friend showed her the Find My Friends app on her iphone. “I hope this doesn’t offend you,” the friend said.
“No offense,” Geri replied. “I’ve already got it.” She had set it up with Jim, allowing him to track where she was through their phones in case she got lost and had to be rescued.
She was a different person with Alzheimer’s, tugged back and forth across the borders of the disease. One day things were one way, and then they were another. The fluctuations would lead her to question herself. “It’s the fraud complex that Alzheimer’s people have,” she said. “You have good days and bad days. And when you’re having a good stretch, you think, Am I a fraud?”
But then the disease would clear its throat and remind her.
Some nights, she would walk in her sleep. She felt as if she were moving at half speed. She lost interest in buying clothes. Food also mattered less to her. She had trouble keeping up in a conversation. “When I’m talking to friends, I’ll prepare,” she said. “Do some research. Like make sure to ask about the latest granddaughter.”
One thing nagging at her was finding purpose in her life, a purpose to replace her career. She’d loved her work. She never wanted to simply walk the sidelines.
Photography had been a sideline for 30 years, but now she could really devote time to it. Birds were her avid interest. She put her best photos on cards and gave them as gifts.
When she immersed herself in photography, the world around her seemed to relax. With her birds, there was no need to scrabble for the right word. She didn’t have to talk to them. “For me, the disease doesn’t exist when I’m taking pictures,” she said.
“Everyone is happy they are with people just like them, who can’t get the words out.”
FROM THE FRONT LINES
The Caringkind caregiver workshop began in the training room. There were eight participants, Jim among them.
The moderator told the participants that eventually they would need support too. “You can only bend so far before you break,” she said. She invited sharing. Driving came up. A woman said she got nervous when her husband almost ran a red light and stopped only because she yelled. Afterward, she confiscated his keys. He got furious. She relented. They were still hashing it out.
Next, the moderator said she wanted to try an exercise. She handed everyone two sheets of paper. Each contained a star drawn in double lines. She asked them to draw a line between those double lines, tracing the outline of the star. Once they finished, she asked how they felt about the experience.
Back came their answers: “Boring.” “Annoyance.”
She then handed everyone a small mirror. Now, on the second sheet, she wanted them to position the mirror so they could see the star in the reflection and then trace the star again while looking only in the mirror. The point was to let them experience a taste of what it was like to have dementia, to promote understanding and empathy.
As he fumbled his way through the star exercise, Jim said, “This is like driving a U-haul trailer in reverse.”
The results were appalling, lines scooting all over the place. Again, the moderator asked how they felt.
“Frustrated.” “Disoriented.” A piqued woman asked, “So is this how they feel, people with Alzheimer’s?”
The moderator replied, “I would put that back to you. What do you think?”
The woman was quiet. She got it. “Yes,” she said softly, “I guess it must be.”
SHARING THE JOURNEY
J im read a newspaper article about an early-stage study for an experimental drug. Geri trawled the Internet and learned that part of the trial was under way at Yale New Haven Hospital in Connecticut. Soon she was in New Haven for cognition testing.
The results placed her in the mild stage of Alzheimer’s, the appropriate group for the trial. A PET scan confirmed she had amyloid buildup in her brain, another prerequisite.
This felt like hope, and it had a
This felt like hope—a drug that might negotiate some sort of truce with this disease.
potent allure for her, the possibility that the drug might negotiate some sort of truce with this disease.
She wouldn’t know whether she would receive the drug or a placebo, but because of the way the trial was structured, the odds of getting the treatment were high. Either way, she would be entitled to the actual drug after the yearlong study period, assuming it was effective.
Meanwhile, in February 2015, the Taylors took a winter break in Florida. They were invited to give a talk about living with Alzheimer’s at a church that Jim’s sister belonged to. They had at first been hesitant. But if it went well, perhaps it was something they could keep doing. Maybe how they were figuring out this disease could help others.
Three dozen people squeezed into the room. Geri sat in a chair. When she stood too long, she got tremors. Geri and Jim told about the way the disease weighed on them, how they avoided the lockdown that people with Alzheimer’s went through, how they chose forward as the only sensible direction. The small details drew good laughs. How Geri kept confusing their toothbrushes and finally threw away Jim’s because she couldn’t figure out whose it was, even though, as she put it, “there were just the two of us.”
She gave tips on how to communicate with someone with the disease: Focus on one subject; never ask several questions at the same time. When a friend pelted her with multiple questions, it left her baffled.
The audience was hushed and rapt, hearing an aging couple tell how they were torn up and united by a disease.
A man wanted to know whether she did crossword puzzles. She said she didn’t; they were too frustrating.
Someone else asked, “What do you want to hear when you tell someone you have Alzheimer’s?”
“‘I love you; anything I can do I’ll do,’” said Geri. “The acceptance is more important than the particulars.”
When they finished, the applause went on for a while.
NEW MISSION
In March 2015, Geri returned to New Haven for her first monthly infusion of the trial drug, called aducanumab. Biogen, the manufacturer, had recently announced that an analysis of 166 patients had shown positive results. The drug slowed cognitive decline and reduced plaque in the brain. Experts saw the data as encouraging. Of course, other drugs had offered initial promise only to be discarded as false leads.
In April, the doctor sat with Geri as she lay outstretched, an IV needle in her arm. She knew about the parade of failures for Alzheimer’s drugs. At this point, the drug remained a question mark. It would take years to know its genuine worth.
“How are you feeling?” he asked. “Fine.”
“No itching?”
“No.” She felt hopeful. It was her inner optimism, her desire to locate a way out.
Geri and Jim gave several more talks on Alzheimer’s. They were becoming apostles for how to live with the disease. But she needed to do more. She wanted to see strategies identified and shared for navigating the everyday mundanities, for wrenching survival out of this disease.
In August, Geri met with two Caringkind staff members. She gave her pitch. She didn’t want a traditional support group. She wanted a group to share strategies, a peer-driven Alzheimer’s tutorial. “We don’t want to be done to. We want to do.”
Caringkind set up a series of workshops to swap tips for living with early-stage memory loss.
The Taylors then met with the Connecticut chapter of the Alzheimer’s Association and told them of their ambition to brush off the stain of Alzheimer’s. They learned that the association offers to do presentations at companies. Corporate executives first say they don’t think they have anyone affected, and then the association shows up and there are 80 or 90 people waiting to listen. The stigma again. The denial. People hiding it.
“If it stays hidden,” said Geri, “people don’t develop the strategies to
compensate for the deficits. They just slowly pass into a state of inability.”
The Alzheimer’s Association staff members agreed. They mentioned a woman who couldn’t remember where different dishes were stored, so she put glass doors on her cabinets. And the husband who worried his wife would get lost when they went shopping and he wouldn’t recall what she was wearing, so now they wore shirts of matching color.
Geri Taylor listened to all of this, and then the association’s CEO said she wanted Geri’s help. Come and speak. Become one of their champions. Maybe become a representative to the national organization.
Geri’s face crinkled up, and she began to cry. For what she wished more than anything was for people with Alzheimer’s not to live in shame but in nobility and to learn ways to carry on. This woman was telling her she wished for it too.
More than three years had rolled by since Geri hadn’t recognized her face in the mirror and began to wonder what would fill her days. Now, with her involvement in the Alzheimer’s Association, here was the answer. This would be her second act, something that drew on her healthcare career: helping others deal with the darkness of Alzheimer’s.
Having purpose was the stabilizing force. And Alzheimer’s itself, she realized, could be her purpose. Geri Taylor continues to work with the Connecticut and New York City chapters of the Alzheimer’s Association. She is a national spokesperson for the organization, sharing her story to raise awareness of the disease and advocating for more Alzheimer’s research.
Helping others deal with the darkness of Alzheimer’s would be her second act, her purpose.