WHEN ALZHEIMER’S IS PERSONAL
One Woman’s Fight
ITBEGAN WITH WHAT SHE SAW IN THE
bathroom mirror. Geri Taylor padded into the shiny bathroom of her New York apartment and casually checked her reflection. Immediately, she stiffened with fright. She didn’t recognise herself. She gazed at her image, thinking: Oh, no, that’s not me.
Who’s that in my mirror? That was late 2012. She was 69 years old and 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 several administrative positions. Once, she was leading a staff meeting when she had no idea what she was talking about, her mind like a stalled engine.
Certain mundane tasks stumped her. She told her husband, Jim Taylor, that the blind in the bedroom was broken. He showed her she was pulling the wrong cord. It kept happening. Finally he scribbled on the wall which cord was which.
So, yes, she’d had inklings that something was going wrong with her mind. But to not recognise her own face! This was when she had to accept a terrible truth. “Before then I thought I could fake it,” she would later explain. “This convinced me I had to come clean.”
She confided her fears to her husband and made an appointment with a neurologist. The neurologist listened to her symptoms, took blood, gave her a standard cognitive test. She was asked to count backwards from 100 in intervals of seven. He told her three common words, said he was going to ask her about them later. When he asked, she knew only one.
He gave a diagnosis of mild cognitive impairment, a common precursor to Alzheimer’s disease. The first label that was put on what she had. Even then, she understood it was the footfall of what would come. Alzheimer’s had struck her father, an aunt and a cousin. She long suspected it would eventually find her.
Alzheimer’s is degenerative and incurable, and democratic in its reach. Worldwide nearly 47 million people have Alzheimer’s or related dementia. People live with it about eight to ten years on average after diagnosis, though some people 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. Now this was Geri Taylor. Waiting.
SHE NEVER CRIED
Geri remained energised, in control, the silent attack on her brain not yet in full force. But what about next month? Next year? The disease would be there. It nicks away at you, its progress messy and unpredictable.
“The beginning is like purgatory,” she said later. “It’s kind of a grace period. You’re waiting for something. Something you don’t want to come. It’s like a before-hell purgatory.”
Geri is an effervescent woman, with a round face and a froth of swirling hair. In her healthcare 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 the world as they back-pedal 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. Her career was concluded. Mortality was pressing in. Was she limited to backward glances, or could this be a new beginning?
At first her husband had trouble adjusting. He wouldn’t meet her eyes. He drew away. Jim is two years younger than Geri, a lanky, warm-voiced man. To unfreeze the chill between them, it took a pep talk that put the present in softer perspective. Geri 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 forwards into their reordered lives.
Many think of Alzheimer’s as a memory disease, but its awful mysteries involve more than that. Not only was her memory leaving her, but also what is called ‘executive function’. You lose the sequence of steps in a process, like a man who begins shaving before applying shaving cream.
She couldn’t know the speed of her decline. It is different with everyone. The impact, she learned, in part appears determined by the amount of
“THE BEGINNING IS LIKE PURGATORY,” GERI SAID. “IT’S KIND OF A GRACE PERIOD. YOU’RE WAITING FOR SOMETHING”
cognitive reserve, the mental capabilities that accumulate 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. 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.
Jim drew up a to-do list, a way to get things started. When to tell the kids and the grandkids. How long to keep two homes. Advancing care need. End-of-life decisions.
Geri was advised not to tell people of her condition. Friends will fall away from you, she was told. It was as if there were something illicit about contracting Alzheimer’s. The Taylors wanted no part of that. “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. She wanted time to try on her new life, so she could share the news without an overflow of emotion. 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, the glare of the truth too bright. Are you sure … You don’t seem … I didn’t notice ... Some practically tried to talk her out of it.
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. She lost things and then forgot what she had lost.
A fraying at the edges of her life. “I know the tide is going out on my memory,” she would say.
She had trouble with time. “I have no clock in my head anymore,” is how she put it. “The concept of how long it takes to do something has been lost.” If she had seen someone that morning, by afternoon she would wonder if it had happened some other day.
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 made to herself. Have to be where? When? Do what? Call whom? She used the camera to snap pictures of places to remember them.
In March 2014 she went to the CaringKind organisation in midtown Manhattan. She had been reluctant to visit, picturing the place as a resource for those sunk deeper into the disease’s darkening world, that it was too early for her. But once she mingled, she knew she was right on time. “I thought these were my people,” she said. “This is where I belong.”
She enrolled in some programmes, 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 them or forestall their decline. They were there to have fun – name words starting with the letter B; foods starting with the letter M.
The best part was not having to mask her shortcomings. In the outside world it was a constant struggle to keep up. Outside, people with Alzheimer’s are looked on as broken. Inside these walls, though, everyone had it. Alzheimer’s was normal. In Memory Works, she felt protected and safe.
The chumminess among these strangers was amazing. They were hijacked by a ghastly disease. But they joked around, egged one another on. “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.”
HER NEW BEST FRIEND WAS HER IPHONE. MAYBE 20 TIMES A DAY SHE SCROLLED THROUGH THE CALENDAR
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 was weaving, one wrong step away from whirling onto the floor. It was worst when she talked while walking. Once she fell while conversing with friends. Her new rule: talk only if necessary while walking.
One day she was driving and she bumped into another car. There was no serious damage, but it was totally her fault. Not long after, she was driving with Jim when she came on some roadworks. A flagman motioned her to stop. Instead, she continued onward, feeling an irresistible urge to speak to the flagman. Finally, Jim got her to stop. She couldn’t explain her odd behaviour.
That night, Jim suggested that she ought to stop driving, that she was using poor judgement. She lashed out at him, told him he used poor judgement all the time. Drove too fast. Tailgated. But the next day, once the weight of inevitability settled in, she agreed to cut back, 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.
“I’ve already got it,” Geri replied. 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. Feeling normal. Trapped in a diffuse cloud. Bursting with energy. Worn out. The disease wasn’t a straight line.
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 sleepwalk. One morning, she woke up and found herself stockstill in the living room, peering out the
window. Sometimes she hallucinated and had creepy, involved dreams. She would scream in her sleep, and Jim had to shake her awake.
She felt like she was working at halfspeed. “I can’t just open my closet in the morning and put together what to wear. I lay things out the night before or start earlier in the morning. One thing I concentrate on is looking orderly. I don’t want to look old and crazy. In a heartbeat, I know, I could look disorderly.”
Food also mattered less to her. She never liked grocery shopping. She liked it even less now. “One big symptom is the inability to cook and assemble,” she said. “Now I’m happy with a plain sandwich, or I’m buying
pre-cooked chicken.”
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. Which I forgot to do the other morning. Or to ask about the husband, making sure there is a husband.”
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.
Certainly, the photography was a salve. When she immersed herself in it, the world around her seemed to relax. The Alzheimer’s felt oddly absent, not able to touch her. 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.
The birds were wonderful. But were they enough? She didn’t think so, but hadn’t yet imagined what could be.
The CaringKind caregiver workshop began in the training room. There were eight participants, Jim Taylor 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. Afterwards, she confiscated his keys. He got furious. She relented. They were still hashing it out.
One frustrated woman, caring for her husband, said with a quaver in her voice: “You’re left on your own with this, looking all the time, watching – oh you repeated that two times, you repeated that three times. I don’t like it.” Another woman said: “He probably doesn’t like it, either.”
The moderator brought up the organisation’s medical alert programme. Wandering is common with Alzheimer’s. It typically happens if there is a disruption in one’s routine. So the organisation recommends everyone get an identification bracelet.
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. Then to trace the star again while looking only in the mirror. The point was to let them experience a taste of
WITH HER BIRDS, THERE WAS NO NEED TO SCRABBLE FOR THE RIGHT WORD. SHE DIDN’T HAVE TO TALK TO THEM
what it was like to have dementia, to promote understanding and empathy.
As he fumbled his way through the star exercise, Jim Taylor said, “This is like driving a 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. “Yes,” she said softly, “I guess it must be.”
SHARING THE JOURNEY
Jim Taylor read a newspaper article about an early-stage study for an experimental drug. The drug was aimed at slowing mental decline by breaking up the plaques formed by the beta amyloid protein that are the hallmark of Alzheimer’s. The company Biogen was testing subjects with mild cases of Alzheimer’s. It was a promising possibility in a field littered with disappointments.
Geri learned that part of the trial was underway at Yale New Haven Hospital in Connecticut. A few slots were still open. Soon she was in New Haven for cognition testing. The results placed her in the mild stage of Alzheimer’s, the appropriate group. A PET scan confirmed she had amyloid build-up in her brain, another prerequisite for the trial.
This felt like hope and it had a 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, though 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 year-long study period.
Meanwhile, in February 2015, the Taylors were invited to give a dinner 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 at the church. Geri sat in a chair. When she stood too long, she got tremors.
Jim said: “We’re happy to be here tonight to share our journey. While sometimes difficult, it’s actually been a rather exciting time.”
They told about the way the disease weighed on them, how they avoided the lockdown people with Alzheimer’s went through, how they chose forward as the only sensible direction to follow. 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 ti p s on how to
THE AUDIENCE WAS HUSHED AND RAPT, HEARING A COUPLE TELL HOW THEY WERE TORN UP AND UNITED BY A DISEASE
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 ageing couple tell how they were torn up and united by a disease.
They took questions. A man wanted to know if she did crossword puzzles. She said she didn’t, they were too frustrating. But she still loved to read and was ploughing through Crime and Punishment. 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.”
NEW MISSION
In March 2015, Geri had her first monthly infusion of the trial drug aducanumab. Biogen 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 fact, further results a few months later were more nebulous.)
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. “It must be exciting to be involved in a success,” she said to the doctor.
“Well, a qualified success,” he replied. “It’s still early.”
At this point, the drug remained a question mark.* It would take years to know its genuine worth. He was rightly cautious. “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. She told the doctor, “I’ve said to Jim that if I could be freezedried like this, I could live with that.”
And, sure, who wouldn’t grab that
*On August 28, 2017, Biogen announced positive results from a three-year trial that found levels of amyloid plaque continued to decrease in patients taking aducanumab. Two global Phase 3 studies are currently underway.
bargain? Live with hunting for words, misplacing her belongings, not driving? Why not? She knew nothing would return her to the person she had been, but being freeze- dried where she was better than the ugliness of the disease’s end stage.
Meanwhile, Geri and her husband gave 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 world, for wrenching survival out of this disease. Since she had it, she felt she was an authority.
In August, Geri met with two CaringKind staff members. Geri gave her pitch. She didn’t want
a tradit ional support group. She wanted a group to share strategies, an Alzheimer’s tutorial that could be peer- driven. “We don’t want to be done to, we want to do.”
CaringKind set up a series of three workshops to swap strategies for living with early-stage memory loss. For and by the underdogs. People voiced their problems. There was interest in clinical drug trials. Strategies were called out and put on a whiteboard.
Geri Taylor offered her ideas. Of how to rely on a smartphone, socialising frequently, inventing reminders and finding a purpose. She suggested the group should have handbooks published detailing these strategies.
Later, the Taylors met with the
Connecticut chapter of the Alzheimer’s Association, saying they were amazed at how many people were still in the closet about Alzheimer’s.
“If it stays hidden,” says 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, so now they wore shirts of matching colour.
Geri Taylor listened to all this, and then the association executive said she wanted Geri’s help. Come and speak. Become one of their champions. Maybe become a representative to the national organisation.
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. And this woman was telling her she wished for it, too. Geri had never cried, never pitied herself for getting the disease, but this made her cry.
More than three years had rolled by since Geri Taylor hadn’t recognised 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 stabilising force. And Alzheimer’s itself, she realised, could be her purpose.
Currently, Geri Taylor is a spokesperson in the US for the Alzheimer’s Association, sharing her story to raise awareness of the disease and advocating for increased funding for Alzheimer’s research.