By n. r. kleinfield
A withered person with a scrambled mind,
memories sealed away: That is the familiar
face of Alzheimer’s. But there is also the
waiting period, which Geri Taylor has been
navigating with prudence, grace and hope.
A Life-Changing Diagnosis
IT BEGAN WITH what she saw in the bathroom mirror. On a dull morning, Geri Taylor padded into the shiny bathroom of her Manhattan apartment. She casually checked her reflection in the mirror, doing her daily inventory. Immediately, she stiffened with fright.
She didn’t recognize herself.
She gazed saucer-eyed at her image, thinking: Oh, is this what I look like? No, that’s not me. Who’s that in my mirror?
This was in late 2012. She was 69, in her early months getting familiar with retirement. For some time she had experienced the sensation of clouds coming over her, mantling thought. There had been a few hiccups at her job. She had been a nurse who climbed the rungs to health care executive. Once, she was leading a staff meeting when she had no idea what she was talking about, her mind like a stalled engine that wouldn’t turn over.
“Fortunately I was the boss and I just said, ‘Enough of that; Sally, tell me what you’re up to,’” she would say of the episode.
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. Kept happening. Finally, nothing else working, he scribbled on the adjacent wall which cord was which.
Then there was the day she got off the subway at 14th Street and Seventh Avenue unable to figure out why she was there.
So, yes, she had had inklings that something was going wrong with her mind. She held tight to these thoughts. She even hid her suspicions from Mr. Taylor, who chalked up her thinning memory to the infirmities of age. “I thought she was getting like me,” he said. “I had been forgetful for 10 years.”
But to not recognize her own face! To Ms. Taylor, this was the “drop-dead moment” when she had to accept a terrible truth. She wasn’t just seeing the twitches of aging but the early fumes of the disease.
She had no further issues with mirrors, but there was no ignoring that something important had happened. She confided her fears to her husband and made an appointment with a neurologist. “Before then I thought I could fake it,” she would explain. “This convinced me I had to come clean.”
In November 2012, she saw the neurologist who was treating her migraines. He listened to her symptoms, took blood, gave her the Mini Mental State Examination, a standard cognitive test made up of a set of unremarkable questions and commands. (For instance, she was asked to count backward from 100 in intervals of seven; she had to say the phrase: “No ifs, ands or buts”; she was told to pick up a piece of paper, fold it in half and place it on the floor beside her.)
He told her three common words, said he was going to ask her them in a little bit. He emphasized this by pointing a finger at his head — remember those words. That simple. Yet when he called for them, she knew only one: beach. In her mind, she would go on to associate it with the doctor, thinking of him as Dr. Beach.
He gave a diagnosis of mild cognitive impairment, a common precursor to Alzheimer’s disease. The first label put on what she had. Even then, she understood it was the footfall of what would come. Alzheimer’s had struck her father, a paternal aunt and a cousin. She long suspected it would eventually find her.
Every 67 seconds, with monotonous cruelty, Alzheimer’s takes up residence in another American. Degenerative and incurable, it is democratic in its reach. People live with it about eight to 10 years on average, though some people last for 20 years. More than five million Americans are believed to have it, two-thirds of them women, and now Ms. Taylor would join them.
The disease, with its thundering implications, 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, memories sealed away, aspirations for the future discontinued. But there is also the beginning, the waiting period.
That was Geri Taylor. Waiting.
Right now, she remained energized, in control of her life, the silent attack on her brain not yet in full force. But what about next week? Next month? Next year? The disease would be there then. And the year after. And forever. It has no easy parts. It nicks away at you, its progress messy and unpredictable.
“The beginning is like purgatory,” she said one day. “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.”
Ms. Taylor is an effervescent woman, with a round face and a froth of swirling hair. Well spoken and ruminative, she evinces a nimble wit and a droll manner. She is 72. She and her husband, also retired, live near Lincoln Center, and they keep a weekend place in Sherman, Conn.
In her health care career, she had seen Alzheimer’s in action. Now she would live it, in high resolution. Those who learn they have the disease often sink into a piercing black grief, try to camouflage their symptoms from a dismissive world as they backpedal from life. Ms. Taylor was wired to absorb adversity, and she pictured Alzheimer’s differently, with gumption and defiance and through a dispassionate, unblinking lens.
As she crossed the pitted terrain of Alzheimer’s, she would find surprises. Disturbing ones and ironic ones, but also uplifting ones. Many days she would not only experience wells of frustration, but also discover wisps of joy. The disease, her new invisible companion, was much larger than she was, and she would have to live submerged in its shell. It made her question her purpose and hunt for possibility.
Her career was concluded. Mortality was pressing in. Was she simply a woman with Alzheimer’s, limited to backward glances, or could this be a new beginning?
Ms. Taylor in Jupiter, Fla., last year. In 2012, she was given a diagnosis of mild cognitive impairment, a common precursor to Alzheimer’s disease.
HER HUSBAND couldn’t adjust, as if he had stumbled into the wrong life. He wouldn’t meet her eyes. He drew away, sulky, making her feel disowned.
As he would describe it: “I did the usual man thing and went into my cave. Became uncommunicative for two weeks. I thought, this was not what I signed on for. I had married a nurse to take care of me. How’s that for being supportive?”
Two years younger than his wife, Mr. Taylor is a lanky, warm-voiced man with a narrow face and cap of precisely combed snow-white hair.
To unfreeze the chill between them, it took a pep talk that put the present in softer perspective. They sat down and Ms. Taylor said straight off, “This is something that is going to develop, but it hasn’t developed yet.” Just saying that helped.
Yes, something big had happened. She was what she was. Yet they were still alive. Still together, with more mileage in their future. So they moved forward in the first days of their reordered lives.
Not only was her memory leaving her. Many think of Alzheimer’s as a memory disease, but its awful mysteries involve more than that. When she gave the doctor examples of her symptoms, he replied, “That’s not memory; that’s executive function.” In effect, you lose the sequence of steps in a process. Like a man who begins shaving while neglecting to use shaving cream.
She couldn’t know the speed of her decline. It is different with everyone, until the disease realizes its ultimate purpose. The impact, she had learned, in part appears determined by the amount of cognitive reserve, the mental capabilities of the brain that accumulate over a lifetime and are related to intelligence and stimulation. 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. There were some side effects. She abandoned drinking when she kept getting nauseated. She was never a big drinker, but, as she put it, “I liked to party.”
Fully aware that an earthquake had occurred in her life, she knew this disease was bottomless in its unhappiness if you let it take you there. Yet 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. (“I can think of 10 things that would get me more upset. My son could get hurt. My sister could.”) Instead, the disease made her hungry for living.
“I don’t have very typical reactions,” she explained. “There was actually a sense of relief because of doing something about it. I intellectualize things, so it gave me a false sense of control. I knew I had a tremendous amount of family and friend support. I knew my husband doesn’t run away from things.”
She vowed to plunge ahead and accelerate her longtime interest in photography. See friends more. Mr. Taylor had his Friday morning foreign affairs group at the Jewish Community Center but planned to indulge his interest in acting before he would be conscripted into doing more and more for his wife. He signed up for some acting lessons. Doing these things, they felt, would make the disease more coherent in their lives. Somehow they aimed to live the most fulfilling days they could at what seemed the bleakest possible time.
Ms. Taylor, at age 2, with her mother in Coney Island, Brooklyn.
HIS MOOD IMPROVED, Mr. Taylor drew up an Alzheimer’s to-do list, a way to get things started. This was it:
What tell kids; when; grandkids?
How long keep 2 homes?
Advancing care need?
Home care ALZ assistance
Where ALZ units?
They began to sort through it. Would they need a two-bedroom apartment, for when they required live-in help? And to accommodate the fact that people with Alzheimer’s sometimes stay up all night? Should they keep both the apartment and the house? Could they carve out a second bedroom in the L of the living room? They toured an apartment upstairs where that had been done.
They decided to stay put and alter the apartment when necessary.
They were comfortable financially, but the disease can rapidly devour resources toward the end. Ms. Taylor didn’t want to be institutionalized but knew it could happen. In time, they would revise their wills, shielding some assets for their children.
What about telling others? Ms. Taylor had been seeing a therapist, for help decelerating into a jobless life. At one session, she mentioned her Alzheimer’s. The therapist said unequivocally: Tell no one. Friends will fall away from you. Stamp you off-limits. This got Ms. Taylor’s hackles up. It was as if there were something illicit about contracting Alzheimer’s. She dropped the therapist.
The Taylors hated the stealth that encased the disease, how it was treated like an unmentionable cousin. They wanted no part of that. Ms. Taylor decided that she would not show herself as some spackled-over person. “It was my decision to let the disease be alive in my life,” she said. “You don’t have to just throw in the towel.”
She didn’t know the order of whom she would tell, nor how to phrase something so shackled with frightful connotations. Your life becomes a script. Alzheimer’s, she knew, leaves its heavy imprint on everyone.
“I don’t care about what they think of me,” she said. To her, Alzheimer’s was another fact of human life. But she worried about what the news might do to them, caught as they would be in the disease’s undertow. That was her nurse empathy kicking in. And she fretted about how others would view her husband. Would they scratch him off the list for social activities, knowing that, well, with his wife the way she was, they were no longer the same couple, no longer a good fit? She didn’t want him wearing the stigma, too.
They waited six months. She wanted time to try on her new life, acquaint herself with its personality, so she could share the news without an overflow of emotion.
She wanted it evident that she was “still steering the ship.”
Then, over the July 4 weekend in 2013, she told the children: her son from an earlier marriage and Mr. Taylor’s two daughters and son from his previous marriage. It was done systematically, child by child with their spouses or partners.
She intentionally told them each separately. “Every kid wants to feel that you have an individual relationship with them,” she explained. “If you sit them together, you’re treating them like a package of Chiclets. You deny them their individuality. They’re going to be reacting to their siblings and their sibling relationships. Dementia has an ugly picture. I wanted them each to have a chance to react on their own.”
It was tough news to hear. It was done tidily. They didn’t need much detail. It was difficult for her, for she knew she was giving them pain.
There were Mr. Taylor’s three children: Mark Taylor, a civil rights lawyer, who lived in Brooklyn with his wife and young daughter; Amy Taylor, a nurse who resided in New Jersey; and Heidi Taylor, a sociology professor who lived in Maine with her two daughters. All had familiarity with the disease. Amy saw it in her work and Heidi in her research in medical sociology. After college, Mark had worked in a nursing home in Maine, and had seen it there.
Ms. Taylor’s son, Lloyd Widmer, a real estate appraiser who lived with his fiancée in Montgomery, N.Y., was not surprised. He had detected glitches in her memory and would tease her about them. Now that he knew their origin, he wasn’t going to back off. He was a verbal person, and they had a talkative relationship. She would joke: “I think he’s been talking to me since before he was born. I heard this tapping sound.”
So he kept teasing her, even more than before, to the extent that his fiancée sometimes grew uncomfortable. Ms. Taylor didn’t mind. They were very close, had been since Mr. Widmer broke his hip in an accident when he was 21. For the first time, he didn’t feel invincible, and it tightened his relationship with his mother.
She postponed informing the grandchildren and moved on to other relatives and close friends, steadily widening the circle. She wasn’t going to take out an ad, “Geri Taylor gets Alzheimer’s,” but she was going to be frank. Her therapist had said: Tell no one. She was going to tell everyone.
Some accepted the news unblinkingly, others quibbled, the glare of the truth too bright for them to stare at. Are you sure … You don’t seem … I didn’t notice. Some practically tried to talk her out of it. She had to argue her case, insist that she had something no one wants.
One friend got worked up, would call her and say, “I’m just so upset and you must be so devastated.”
That stung. Well, thanks for bringing that up, she would think.
Then tell herself: Yes, there are many layers to this. But it’s not all devastating.
A good friend, swept up in concern, combed the Internet for solutions and zeroed in on coconut oil. Some research suggests it may improve cognitive function. A doctor wrote a book about it. She mentioned it to Ms. Taylor.
Considering herself a “medical rules snob,” Ms. Taylor is scornful of charlatan cures and magical thinking. Yet she knew coconut oil was innocuous enough. Out of respect for her friend’s kind intentions, she began drinking it. “At my age, what harm could it do to my system?” she wondered. “It’s good for nails, good for the skin.” She drank it for a few weeks, detecting no benefit, then forgot about it and moved on.
One thing she had noticed during her confession tour left her with a sunken feeling. Some of her friends showed early symptoms. They’re on the path, she thought.
Ms. Taylor and her husband, Jim Taylor, taking a cab during their trip to Las Vegas in 2014.
GERI TAYLOR WAS BORN in Brooklyn and lived there until she was 5, after which her family — the Wilsons — drifted through a sequence of Long Island towns — Valley Stream, Levittown, Massapequa. She had a brother and sister; she was the middle child.
Her father managed a Woolworth store. He had Tourette’s syndrome since he was 8, a bad case. He kept it under sufficient control to do his job ably, though not enough that Ms. Taylor wanted to have friends over. Yet he was an unshakably happy person, and she caught his happiness.
Her relationship with her mother was fraught with difficulties. She was a bank teller and accountant who had a personality disorder. Her mood skittered unpredictably, one moment affectionate, the next belligerent. “It was like, Come here, darling, so I can stab you,” Ms. Taylor said. “A hello could be humiliating from my mother.”
Her strained relationship with her mother made her want to exit the house as early as possible. She had aspirations to go to college and make a career in mathematics or else in literature. Ms. Taylor’s mother, who very much directed the household, felt she should bypass college and get a job.
“I was a happy child,” she said. “But I was treated by my mother as an accessory.”
She had the idea to become a nurse. She had saved up $300, enough then to enter nursing school. So she took that as the only plausible escape from her mother’s tirades.
Eventually her parents divorced and each remarried. They died in their late 70s, after having strokes within three months of each other. Her father’s dementia settled in around age 66 and was advanced when he died in a nursing home. Ms. Taylor’s sister lives in upstate New York, her brother in California, neither with signs of Alzheimer’s.
After beginning as a nurse and acquiring a master’s degree in public health, Ms. Taylor moved up into administrative positions. She rose to executive vice president at Beth Abraham Health Services, and then was an executive vice president at the Jewish Guild for the Blind. One key thing she worked on was establishing hospice and home health care programs to keep nursing-home-level older adults at home.
When she noticed memory issues, she removed herself from direct administration and wrote grants until she turned 65 and retired from the guild. She spent several more years as a consultant. She worked on adult day care programs and home health care programs.
The way Jim Taylor entered her life was through their children. This was 23 years ago. Both were living in White Plains. Their sons were in the same Cub Scout den, and she was the den leader. During the summer, both enrolled in zoo camp. Mr. Taylor called her to see about car-pooling, and she said she could drive them.
Later, Mr. Taylor asked a mutual friend if Geri was unattached. She had just separated from her second husband; Mr. Taylor had been divorced for eight years.
He grew up in the small town of Cynthiana, Ky., and worked for IBM (he retired in 1999, after 30 years). He was a financial analyst, his niche being pricing strategy for mainframe software.
He had been fairly miserable. “My first marriage, I was not happy,” he said. “I came into the marriage unhappy and thought this person would make me happy. During the time I was single, I worked on my unhappiness. The first few years of single life I was lonely and unhappy. I got happier. I got books and worked on my spirit. Some Buddhist and self-help books. Went to some retreats. Therapy for a couple of years.”
He called and asked if she was free on a particular day. She wondered if he wanted to go to the Mostly Mozart Festival. Happened to have two tickets. They went. He knew from that first date. They got married a year later, in 1993.
Each of Ms. Taylor’s two previous marriages lasted 13 years. Aware of their matching durations, Mr. Taylor used to quip that he was merely the incumbent husband, annually up for re-election, until he made it to the 14th year still in office.
OTHERS COULD HARDLY see it. She knew better. She was slipping, the disease whittling away at her, leaving her less completely who she was. Certain words became irretrievable, sentences coiled inside her mind and refused to come out, belongings vanished: keys, glasses, earrings. She lost things and then forgot what she had lost. Or that she had lost them.
After returning from a trip, she stowed her suitcase in the closet, still bulging with clothes. Weeks went by. She didn’t miss the items. Then she couldn’t find her glasses. Well, maybe they were in the suitcase. She unzipped it and discovered all of these clothes wedged in there. Hmm.
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 elapsed time. It was getting impossible for her to distinguish between the past, the present and the future. Blots of time melded together. She seemed forever in the present, as if her life was one jumbled moment — breakfast, shower, lunch, dinner, movie, shopping, everything conflated together and happening right now. It was as if, without even trying, she had become a Buddhist.
“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. What an hour feels like is gone. It’s morning and then afternoon, and I think the morning was yesterday. With time, it’s always just the present. If you ask me what I’m doing at 3 p.m., I just have to make it up.”
If she had seen someone that morning, by afternoon she would wonder if it had happened some other day. “I could be talking to you and I could have been shopping, and I won’t be sure if I did that this day,” she said. “Like right now I can’t reconstruct yesterday except that the air-conditioner sounded like it was about to blow up. Because my life was about to end. I’m not able to remember what happened earlier. And I’m not thinking about what will happen next. Because I don’t know.”
She knitted her brow. “The time thing is the part where I feel most alien from myself and alien from other people,” she said. “Sometimes I feel like I’m some sort of loose atom bouncing around. Like I’m not doing anything, because I’m floating from thing to thing and then I don’t remember that I did something. And you’ll say, ‘Well, write it down.’ But then I’ll look at the piece of paper and wonder, What is that?”
To untangle the confusions in the infrastructure of her life, she claimed small victories however she could, savoring them. “I’ve been washing the sheets and towels more often because I’m not sure when I last washed them,” she said. “I forget how much food we have. I check more often. I know Jim is monitoring the food much more.”
Her organizational tool had been her mind. But now her mind was a mess, as if a windstorm had upended its contents. “I always remembered phone numbers, addresses, how much people paid for their house,” she said. “I’ve lost all that.”
She knew how to live with a good memory. Who knew how to live without one?
Her new best friend was her iPhone. She fished it out maybe 20 times a day and scrolled through the blocked-off calendar and notes to herself, the lumber of dates and names that never seemed heavier. Have to be where? When? Do what? Call whom? She used the camera to snap pictures of places to remember them. This was a big improvement over the Alzheimer’s experience of her father, who came home several times in a police car.
To navigate day-to-day minefields, she improvised tricks. “I came up the elevator the other day and saw two of the neighbors and I couldn’t remember their names,” she said. “I forgot the whole floor — 14 names — of my apartment building. I thought I better figure out something. So last week I came up with this system. I’ve got everyone associated with someone in my family. And I’ve been practicing. Eric, the next-door neighbor. His name begins with the same letter as my father. Joe is my stepfather. And so on. It’s not foolproof. But it helps.”
A therapist advised Ms. Taylor to tell no one about her disease, as if there were something illicit about contracting Alzheimer’s. She dropped the therapist.
HE CARINGKIND ORGANIZATION is housed in one of those muscular office towers that jut up on Lexington Avenue in Midtown Manhattan. It is where people faced with Alzheimer’s can go for help. About 15,000 or so a year seek something from it.
They make up a sliver of the roughly 250,000 people living in New York City who the group thinks have Alzheimer’s (factor in caregivers and close relatives and the number touched by the disease soars). Many of them throw up their hands, think there is nothing to do. Many deny. Their families deny. They wait too long to find out why their brains aren’t working correctly.
Lou-Ellen Barkan, the chief executive of the group (at the time, it was a chapter of the Alzheimer’s Association but later separated), saw this with her own father. He had some odd symptoms, but he was also odd. What prompted the family to get him to a doctor was when they thumbed through his checkbook, often a giveaway. He hadn’t balanced it in months. He had written checks to charities he had never supported, for instance the Mouth and Foot Painting Artists.
When she mulled over whether the organization had something for her, Geri Taylor was reluctant to visit. She pictured the place as a resource for those sunk much deeper into the disease’s darkening world, that it was too early for her.
Still, one sun-smacked day in March 2014, she went to have a look. Once she mingled a bit, she knew she had been dead wrong. She was not early. She was right on time. In a city of so many, she knew these people; they were alike, all walking in the shadow of Alzheimer’s. “I thought these were my people,” she said. “This is where I belong.”
So she dived in and enrolled in some programs. Discover New York. A photography workshop. And she signed on for one of the continuing Memory Works groups that engaged in mind exercises for those in the early stage of Alzheimer’s. At first, Ms. Taylor was skeptical. She knew all about the memory games that some experts promote to resharpen balky minds, yet the research she had read frowned on their effectiveness. Her own feeling was that they were annoying and pointless.
Yet she gave Memory Works a shot. Surprisingly, she liked it, liked the companionable people, liked the exercises. She became known as the perky one. The moderator was upfront that the games would not cure them or forestall their decline. They were there to have fun. One of them was a marvelous whistler who entertained them while they waited to begin. So every Thursday at 11 a.m. she came, sat among the eight and participated in the swell of games for the hour and a half.
Name words starting with the letter B.
Name foods starting with the letter M.
The best part was not having to mask her shortcomings, audition for acceptance. In the outside world that was increasingly foreign and fearsome, the pages seemed to turn too fast, and it was a constant struggle to keep up. “People say: ‘What do you mean? There’s nothing wrong with you,’” she would explain. “But I’m always hiding things.”
Outside, people with Alzheimer’s were looked on as broken. In the groups inside these walls, though, everyone had it. Alzheimer’s was normal. In Memory Works, she felt protected. Unhampered. One of the others called it a “safe place,” and that felt right to her. “There is nothing like being different with your own people,” is how she would put it.
More than anything, people with leaky memories came to this sanctuary to find affirmation that they were still a presence in the world, that they were still valid. Ms. Taylor found renewed meaning by being among others like herself.
As Thursdays swept by, the sessions became amazing. Not the games and whether they did any tangible good. But the chumminess and the vibe among these strangers all hijacked by a ghastly disease — the retired software developer and the former lawyer and the bridge writer. They egged one another on. Joked around. It seemed inconceivable, but Ms. Taylor had never belonged to a group that was so much fun.
“It’s like a party,” she would tell others. “Everyone’s laughing. And everyone is happy they are with people just like them who can’t get the words out and can’t find the bus pass.”
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.
Ms. Taylor at age 9.
SHE WAS FOLDED into a chair in the living room, working her way through a cup of coffee. She sat arched toward her husband, the two of them talking through the afternoon’s changing light.
The apartment was a pin-neat one-bedroom, its windows offering sweet views that went a long ways. The black leather couch and rug were new. Her idea. She didn’t want Mr. Taylor stuck replacing tattered trappings once she could no longer pitch in. Everything with her was do it now.
Ms. Taylor told him: “I find when you can’t remember something but you feel something about it, you take your mind out of it and let your feelings get to it. If you get frustrated and angry, that’s the worst thing because you have this emotional interference. At Memory Works, they said a couple of weeks ago if it sounds like something or feels like something, say it. I was trying to find a word and I thought it felt like hamster, and I said it.”
“Makes sense,” Mr. Taylor said.
It happened that her days spanned strings of triumphs and losses, the ratio vacillating. “I totally forgot the gutter man was coming to Connecticut,” she said. “I wrote it down. But I forget to keep looking. I arranged for a man to come to replace a broken window and I was out. He was supposed to be there in five minutes. I was 20 minutes away. Fortunately he was late.”
Their toaster ovens differed in their two homes. The Connecticut one had no timer to shut it off. She would leave things in it. Once a bagel caught fire. They bought a model with a timer.
“It’s not just the two being different from each other,” she said. “It’s each one being different every day. Operating a car, finding the buttons, gets me mixed up. I can’t figure out how to turn on the air-conditioner. I’ll put my coffee down and go to the bathroom and come out and make coffee all over again. And then wonder, Where’s my mug?”
Applying her makeup, she would overlook an ingredient — the lipstick, say, or the rouge. There is a sequence, she said. She had problems with sequences.
Sometimes during glum moments — when she fumbled a task or lost something — she got down on herself. She would tell her husband, “We need to see a movie.”
Mr. Taylor was always the voluminous talker in the marriage, Ms. Taylor much more abstinent when it came to small talk. Now she spoke to everyone and struck up conversations with strangers, a new aspect of her personality. “I think I just unconsciously started doing it, and the response has been good,” she said.
Her husband looked at her appraisingly and said: “The governor is gone. You’re always coming home and telling me about all these people you met at the photo shop or something.”
“I’m not indiscreet,” she said, eyes widened. “I haven’t brought home any cats.”
“No, but you’re less inhibited than you used to be,” he said. “You do what you want to do, you say what you want to say. You’re not concerned about hurting other people’s feelings.”
“Oh gosh, I haven’t done that, have I?”
“Not that I know of.”
Mr. Taylor said: “You know your days are finite. And you’ve found interacting with strangers much more pleasurable than you thought possible.”
All in all, they were feeling upbeat.
He said: “I know this sounds really strange, but I don’t think Geri and I have had a better period in our marriage than right now. We’re much more dedicated to be with each other. The disease has brought that. Yes, it’s short-lived and there’s a sadness to that, but we’re not focused on that.”
She said, “We feel fortunate in the misfortune of this time.”
Darkness had come on. The city glimmered outside. She untwined herself from the chair and trundled into the kitchen to retrieve a plaque she wanted to show. Months ago, she had been fishing around an arts and crafts store, when her eye fastened on it. It read, “When I let go of what I am, I become what I might be.”
She had to have it. The disease had her wrestling with her self-identity as pieces of her disappeared. What kind of person was she if she couldn’t get names straight or make the oven work, forgot where she put that new blouse, forgot she even had a new blouse?
The plaque spoke to her, convincing her that she could build something else inside her, that she could unfasten herself from the past and not have it dominate the present. She said: “If you continue to think of who you were right up until the time you got Alzheimer’s, you will experience frustration, decline, failure, a lesser self. Not good company. I sometimes can’t complete a thought. I could feel bad about myself. If I have to measure up to what I was before I became this, I can’t. But if you let that go, then you are still becoming something. And it’s not necessarily a diminution of yourself. You must realize, it ain’t over.”
SHE MET TWO GOOD FRIENDS for lunch in Chelsea, then they would see some art. Day by day. Do, do, do.
Ms. Taylor’s friends were Toni Davis, a retired epidemiologist for the New York City health department, and Ellen Weisburd, a retired lawyer. She had met them nine years ago in a now-disbanded book group. She told them a few months earlier about her condition. Both were stunned.
She was watchful walking to the table. Her gait had changed. She felt as if she were weaving, always one wrong step away from finding herself whirling onto the floor. It was worst when she talked while walking. Once she stumbled and fell while conversing with friends. Her new rule: Talk only if necessary while walking.
The table talk rambled. Small talk, big talk. There were some good laughs. That was another concern. Laughter, she found, mangled her thoughts during conversation. She often instantly forgot what she had been discussing. And she loved to laugh.
Ms. Taylor mentioned that her husband would be going out of town and that she would be alone but visiting relatives in the Adirondacks part of the time. Ms. Weisburd asked how she was getting there. Ms. Taylor said by train.
Ms. Weisburd said, “The reason I ask is about driving.”
“Well, I’m driving on an as-need basis,” Ms. Taylor said.
She had never had an accident, had this proud unblemished record. A few months ago, while driving on the West Side Highway in Manhattan, her brain inexplicably told her to follow the dotted lines separating the lanes rather than keep inside them. For 15 or 20 feet, she straddled two lanes before she realized her error.
Then, out of the blue, in early July while visiting her sister upstate, she bumped into another car. There were no injuries or serious damage, but it was totally her fault, and it threw her. “Just before the accident, I noticed the topography in the field to the right seemed different,” she said, and that spooked her.
Not long after, she was driving in Connecticut with Mr. Taylor, when she came on some road work. A flagman motioned her to stop. Despite her husband also telling her to stop, she continued onward, for she felt an irresistible urge to speak to the flagman. Finally, Mr. Taylor’s persistence got her to stop. She couldn’t explain her odd behavior.
That night, he suggested that she ought to stop driving, that she was using poor judgment. She responded by lashing out at him. Told him, well, he used poor judgment all the time. Drove too fast. Passed on the right. And he was chiding her?
The next day, once she thawed out and the weight of inevitability settled in, Ms. Taylor said she would cut back, drive as sparsely as she could.
Now she said to the others, “And I’m not driving anyone else because I find I get distracted when I’m with someone else.”
Ms. Weisburd: “I think I said this to you last time. You’re the most precious cargo.”
“Well, I know. I don’t drive much.”
Ms. Weisburd gave her a searching look. “So how do you feel about that?”
Ms. Taylor said, “I feel fine about it.”
She sipped her coffee. If she didn’t drive, they asked her, how would she do her shopping in Connecticut? “Strange as this sounds, I can take the canoe to the IGA and then walk there,” she said.
“Interesting way to shop for groceries,” Ms. Davis said.
They all laughed.
Ms. Weisburd: “How’s Jim doing?”
“Well, in a bizarre way, since the diagnosis our relationship has been good. Better than ever.”
Ms. Weisburd: “You had said that.”
Ms. Taylor: “Now we’re always living in the present. There’s none of that where you postpone saying something because he’s in a bad mood or something. Right now I can’t remember to postpone something. There’s no, I’ll wait for a better time to give the bad news. And then walk around with this pent-up stress.”
Ms. Davis: “When you’re living in the present, you’re not living with undercurrents of other things.”
Ms. Taylor: “I don’t mean to say this lightly, but there is an end point. And I’m not going to let things end and not say pent-up things.”
Ms. Weisburd: “I know what you mean. And this has gotten you the permission to put it all out there.”
Ms. Taylor: “And for Jim, too. We were just saying that this week. In some senses, Jim’s happier than ever.”
They ate, and Ms. Taylor said: “You know I could have faked this for a while. Hidden it and made excuses. But then there were the signs written on the wall to remind me how to do the curtains, and there was me blowing up the toaster oven. And now Jim’s taken on more things. Making the calendar and checking on me. And he loves it. He’s finally got the job he always wanted. He always wanted to review what I was doing. So in that sense it’s been a soft landing.”
Ms. Weisburd: “It’s most courageous of you to be able to confront this and tell others.”
Ms. Taylor: “It was hard at first.”
Ms. Weisburd: “And telling yourself.”
Ms. Davis: “When you told me, I didn’t pay attention because you looked just like me. Not a time we’re together do I not lose something — brownies with nuts, or my glasses.”
Ms. Weisburd: “I remember you said you developed a particular tool to recapture a conversation.”
Ms. Taylor: “I associate things.
Ms. Davis: “An entire thought?”
Ms. Taylor: “It’s sometimes just a word. The other day I put away my little flash drive. And I said, put it someplace I will associate with it. So I put it with my CD case.”
Ms. Weisburd: “I would have put it with a flashlight.”
Ms. Taylor: “That’s very good. Well, I couldn’t remember. And I said, Where would smart Geri put it? What is it for? Copying pictures. I used to copy pictures on the CDs. Aha, the CD case.”
Ms. Weisburd: “That’s brilliant. There’s this other thing I wanted to mention. I don’t know if this will offend you,” she said, before showing her the Find My Friends app.
Ms. Taylor: “No offense. I’ve already got it.”
She had set it up with her husband, allowing him to track where she was through their phones, in case she got lost and had to be rescued.
After his wife’s diagnosis, Mr. Taylor portrayed an Alzheimer’s patient in the play “Henri.” She helped him perfect his Alzheimer’s shuffle.
JIM TAYLOR DIDN’T KNOW who he was, who anyone was. His head drooped, his chin was bent nearly to his chest. His arms dangled limp against his legs. Mutely, he shuffled dozily in a broad circle through the day room of a nursing home, going nowhere. The Alzheimer’s shuffle. Now and then, he would reach out and grasp at whatever was at hand — a wall, a person, thin air.
In the small audience, Geri Taylor watched the play rehearsal, squeezed next to Mr. Taylor’s daughter Amy.
The whole thing was a freakish twist. Mr. Taylor had always had an interest in acting and had dabbled in amateur theater. Recently he had taken some lessons. He felt he would not have done so if his wife hadn’t gotten Alzheimer’s and they hadn’t chosen to chase their interests while they could.
He spotted a flier at his acting class about auditions for a play. Mr. Taylor thought, Well, why not, I won’t get anything but it will be fun to try. Of all things, the play was about Alzheimer’s, the disease bumping into his life everywhere. There seemed no reason to do it and every reason to do it.
He went and was called back to try out for a nonspeaking part as a wandering dementia patient. A requisite for the role was a credible Alzheimer’s shuffle. With his wife’s tutelage, he practiced it, got it down and landed the part. Some coincidence, they figured. Life did get interesting.
He decided he would do this one acting bit, and that would be enough.
It was titled “Henri,” written by Ryan Reid, a young playwright. She had been inspired by the dementia patients at Isabella Geriatric Center in Washington Heights in Upper Manhattan, where she volunteered and where this rehearsal was taking place in late 2014. Her grandfather had Alzheimer’s. When she saw the disease up close, she understood its horror but also felt that there was still beauty in how those afflicted with it functioned. She wanted to tell that. The play focused on a music teacher named Henri, opening with him in the full throes of Alzheimer’s and rewinding through his life.
Somehow Mr. Taylor didn’t feel uneasy pretending he was as diminished as what awaited his wife. In part, it was because he could not yet imagine that future. He refused to try. To prepare for their roles, the cast members had been invited to visit the dementia patients at Isabella, so they could gaze at the disease. He declined, not wanting to start his thinking down that road.
No, he regarded the play as a performance, not a preview. “I don’t think about the next stage yet,” he would say. “I won’t go there.”
His daughter Amy worried a bit about that, how “he can’t allow himself to imagine the endgame, the real endgame.”
Ms. Taylor had attended an earlier rehearsal with her son, Lloyd Widmer. He found the opening scene of the Alzheimer’s patients almost unbearable. He whispered to his fiancée sitting next to him, “If the second act is like this, I’ll be outside.”
A bar and refreshment counter stood in the lobby. Afterward, he barreled straight for it. The bartender asked if he wanted a drink. Well, better not, he said, he was driving. He mentioned solemnly that the play about Alzheimer’s was pretty heavy for him, since his mother had learned that she had the disease. The bartender took on a look of consternation and seemed as if he might faint. Mr. Widmer said, “Maybe you better have a drink.”
The play was going to be performed for a week in Las Vegas, where Ms. Reid was born, and the Taylors were going out for it, a new adventure. At this point, Ms. Taylor was distinctly unemotional about her husband’s role. She didn’t see him as previewing her own future. Nor did she find herself picturing him actually coming to that same dim destiny.
“Impossible,” she said. “He’s not exactly the same man he was 20 years ago. But I can’t have room for it. I can’t project Jim in that state. Of course, it could happen. He could get on the trolley faster than mine. But there was no poor Jim. I don’t feel poor Geri. So I can’t have that sort of emotion.”
Right now, Ms. Taylor confined her attention to the mechanics of the performance. Her husband’s shuffle? Looked good to her, convincing. She made notes, her own modest suggestions to strengthen the play (What happened to Henri’s daughter? Would it be better to see the wife when she is on the phone?), detaching it from her. No, she told herself, it was not about her.
Down the road, in Las Vegas, when she would see it with a real audience, she couldn’t be sure how she would react.
Hands clasped in her lap, Ms. Taylor sat and watched.
A New Woman Emerges
Geri Taylor, camera in tow, at the Hoover Dam in 2014. Photography had been a sideline for 30 years, but now she could really devote time to it.
SHE GOT to Las Vegas early in the afternoon. The city was its bloated, giddy self, a music festival and a bull-riding championship happening this weekend on top of the usual magnets. Everything screaming action. Decades ago, a business conference brought Ms. Taylor to this mountain-edged city that ate your money without pity. Now it was her disease.
She and her husband had been put up downtown at the Plaza Hotel & Casino. He had been there for a week already, doing his wandering shuffle in the Alzheimer’s play. Ms. Taylor had flown in to see one performance. She had managed to book the same flight as someone she knew, a soothing precaution. Worriedly towing her luggage, she had made it to the gate as the final call was being broadcast, and was last to board. Life bumped along that way for her these days.
Hungry, the Taylors caught a late lunch. Mr. Taylor told her the play had been going well. The chance to act, even in a modest role, had excited him. She asked if he had done any gambling. Just once, he said, winning $4 at the blackjack tables.
It was thinly overcast. Mr. Taylor had to get to the theater. She intended to see the next day’s matinee. The rest of the day was hers to explore, and she needed to figure out how to fill it.
She was a different person with her 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 was stuffed with surprises. It wasn’t a straight line. It was true that sometimes it took all of her willpower just to get to a nearby appointment. The fluctuations would lead her to question herself.
“It’s the fraud complex that Alzheimer’s people have,” she would say. “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.
She wasn’t sure what she could take of Las Vegas and its rocket-fueled pace. Cranked-up decibels and tight crowds frazzled her. So she would pass on the games of chance, visit this betting bazaar without wagering a nickel. She would also disregard Penn & Teller, Shania Twain and the remaining deluge of shows in town.
Ms. Taylor in Las Vegas. Cranked-up decibels and tight crowds frazzled her.
Instead, she would absorb the city by walking a bit, take inventory amid the neon fluorescence. The Fremont Street Experience, a string of blocks bunched with clanging casinos and souvenir stands and live acts, was right there, the crowds thankfully still on the thin side, and she wandered in.
She strolled past the loosely built man dressed as Yoda, pausing to snap a picture on her phone. A couple of years ago, Mr. Taylor’s three children had all gotten tattoos of Yoda on their shoulders in a nod to Yoda’s teachings. She figured they would appreciate the photo.
Her eyes skimmed over the Heart Attack Grill, with its monster scale outside and its come-on of free food for anyone over 350 pounds.
At a kiosk slathered with garish colors, she stopped to buy silly-looking socks for her sister, who likes silly-looking socks. A chirpy woman approached to gauge her interest in a nonsurgical treatment for puffy eyes. Her interest was zero. It stood at the same nonexistent level at a booth where you pay to ingest a burst of oxygen to strengthen your focus.
Moving on, Ms. Taylor took in the Mob Museum, buying a T-shirt for a coming grandchild that read, “I just did 9 months on the inside.”
The congestion was beginning to get to her. Her mind raced. Was she seeing the matinee or the evening performance? What was the name of that photographer she met? She did or didn’t have a breakfast appointment?
Questions constantly buzzed in her head, nested inside one another. Answers failed to come. Oh, her porous mind.
THE PLAY the next afternoon drew a near-capacity house. Such a difference, she found, seeing it with full scenery and before an attentive audience. There was an electric force to it that was less resonant in the rehearsals. How nimbly it unfurled, following the music teacher backward in life, from full-fledged Alzheimer’s to normality. And there now was her husband, in a bathrobe, shuffling, his mind lost in an unreachable world, a fellow nursing home resident. Yes, the shuffle looked good, natural. He had it down all right.
When it ended, Ms. Taylor got emotional. She had seen two rehearsals, but had not been moved the way she was now. As she sorted this in her mind, she realized that it was the first time what she perceived to be the play’s meaning had reached her. It was how one got to a moment in life when possibility ends.
“What it meant to me is all of the things we make happen and live in life are over,” she said. “It wasn’t just going to the nursing home and losing the people close to you or not having a good meal. It was the end of the struggle. And that was wrenching.”
What moved her most was not that her disease was dragging her to that crushing moment, but rather seeing her husband pretending to be in that diminished state. She felt a stab of sadness.
After changing, Mr. Taylor came over and hugged her. A panel of cast members, including Mr. Taylor, then assembled onstage to discuss their intersection with Alzheimer’s.
One of them was a retired social worker whose husband had Alzheimer’s, and she spoke of how she would refer to him as “my disappearing George.”
“Because that’s what happened,” she said. “He was disappearing.”
Mr. Taylor said: “One of the things we’re particularly concerned about is the stigma and the isolation so many patients feel with the disease. It’s considered an embarrassment to have it.” He told about the mime. A mime appeared in one scene in the play, not for any particular reason. But he said it occasioned a conversation between Ms. Taylor and her son. He asked her, “Why is the mime in the play?”
Her reply: “The use of the mime was brilliant. Because I am that mime. I feel I’m looking out at the world from a glass cage, unable to find the words to express what I want to say. Increasingly, I can’t communicate with the world. That’s me in that cage.”
Ms. Taylor, right, viewing a performance of “Henri.” When it ended, she became emotional.
Morning arrived nice and warm, no surprise. She woke up early. After seeing the play, she needed to smooth out her mind. Under scudding clouds, she meandered around the city, tidying itself up from the prior night’s goings-on. Some stragglers were still out, mulling financial shortages. She wondered about the female beggar she had donated a dollar to the day before. She had passed the 90-year-old World War II veteran and the scraggly Vietnam veteran and the one-armed man, but found something genuine in this hard-luck woman with pitted skin and bent fingers. Might she be on duty again this early?
This was the new Geri Taylor, with her penchant to chat up the world. Since her Alzheimer’s diagnosis, she had amped up her friendliness with strangers. The previous morning, parked in the lobby, she started gabbing with the woman seated next to her and somehow began discussing wills and widows, while the woman’s husband was silent next to them, looking increasingly uneasy.
Sure enough, there was the beggar, setting up, her face dappled with sweat. Ms. Taylor dropped another dollar in her receptacle and sussed out her story: how she worked for decades as a cook supervisor in Ohio schools, how she had awful arthritis in her hands and feet, how her marriage blew up, how her current boyfriend lost a good job and was working for low wages at a cosmetics plant, how last Sunday she was out there eight hours to collect $4.55 and didn’t eat that evening.
Ms. Taylor blinked a couple of times, let the woman expel her emotions. Her phone was chirping; Mr. Taylor checking up. “Well, make sure you don’t stay on your feet too long,” she said to the woman. “It’s not good for you.”
“No, I get that, I sure won’t,” she said. “You’re so nice.”
“Well, you are, too,” Ms. Taylor said. “I enjoyed this.”
“I feel I’ve made a new friend,” the woman said. “And God bless.”
The exchange gave her satisfaction, a small encounter with the world on her terms.
She wanted to see the Hoover Dam. Las Vegas was becoming a drag on her, its too-muchness toxic to her system. It sucked the energy out of her.
It was a 45-minute trip, so she mobilized and headed there in the early afternoon. It was a bit cooler with a flicker of wind, but the obstinate sun still glowed strong.
She strolled languidly along the dam amid the anticipatory tourists and their oscillating heads. As the sun hammered down on her, her eyes roved over the magnificence of the sloped dam and the coalescing mountains. She was struck by a row of palm trees planted incongruously. A picture moment, and she seized it.
As she took in a pair of seated statues, “Winged Figures of the Republic,” a scratchy voice crackling over loudspeakers advised that rubbing the feet of the giants promised good luck. She thought little of that fanciful notion. Could these bronze giants know anything about Alzheimer’s? Nonetheless, she brushed her hand over one foot for whatever that would mean. “Well, so, I did that,” she said.
The excursion to the big dam nicely swallowed up the afternoon and had a salutary effect, put something back in her. The next morning, they left Las Vegas.
BEING A BIG READER, she liked to hear authors talk, so she went to the noon talk at the main branch of the New York Public Library to see Richard Ford. She had just finished his new novel, “Let Me Be Frank With You,” about the sportswriter Frank Bascombe’s ruminating on old age. Before entering, Ms. Taylor looked for the man who hung around outside, selling his self-published books. She had chatted with him a few weeks ago and, for $10, had bought a book. It wasn’t great.
No sign of him, so she went in and the talk was pleasurable, Mr. Ford so witty. He took questions at the end. She waved her hand but wasn’t picked. She was going to ask him to elaborate about the “default self” he addressed in his novel.
Afterward, she was glad she had not been called on. Her mind spun and she kept forgetting Mr. Ford’s name, and while she didn’t need to say it in framing her question, she worried that in her usual clamor of confusion she might butcher the question, too. She did not need that wound.
She stopped for lunch nearby. After the waiter took her order, she talked with her lunch companion about her nights, how she sometimes hallucinated and had creepy, involved dreams. She would scream in her sleep, and her husband had to shake her awake. In the dreams, she saw people talking to her. Just the other night, Ms. Taylor heard a woman calling her name, pronouncing it poorly, in some foreign accent.
Later, she would conclude that the woman must have been her husband’s first wife, who had often phoned her to ask something or other.
“I find myself confusing my son and brother,” Ms. Taylor said. “That’s very disturbing. Believe me, sons and brothers and husbands and ex-husbands are not who you want to confuse. I’ve come close on the husbands. Very close.”
The food came. She said: “One of the worst things is if I don’t respond in a conversation. Then I’m not there. So I work at that. I don’t try to do current events. There’s this thing in New York — what art gallery opened? What new play? What new this? There is a social currency in upness. Being up on things. Sorry, I can’t play that game. All I do is thank you very much for the information if you give me some upness.”
Ms. Taylor pushed back a wisp of hair. “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.”
More and more, she welcomed Mr. Taylor’s help with her schedule. As she put it, “It used to be me telling Jim to just shut up already, and now it’s, O.K., dear, what am I doing today?”
She picked at her salad. “I feel I’m working at half-speed,” she said. “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 just want to look orderly. I don’t want to look old and crazy. In a heartbeat, I know, I could look disorderly.
“One thing I’ve lost interest in is buying clothes. I feel it’s a weight. I used to enjoy it. I had my own style that was projected as nonstyle to others. When I go into a store now, there’s too much. I can’t distinguish among things.”
Food also mattered less to her. She never liked grocery shopping, saw it as one of the “cranky” things in life. 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 lunch sandwich. I’m buying more rotisserie chicken from the IGA. Precooked.”
Some nights, she would walk in her sleep. The other morning, she woke up and found herself stock-still in the living room, peering out the window. In Connecticut, their bedroom was upstairs. They kept a children’s gate across the stairs to contain her, to corral her in her own home.
BIRD DAY. She was in Central Park to shoot pictures of birds. Her face shone. Sherry Felix accompanied her. Her tutor. That is what she called her.
Lugging their equipment, they trooped along the damp paths and rash of foliage, the frolicsome park still cranking into life, the clatter of dog walkers and strollers and a giggly grade-school class.
Her tutor had her own story. She had been working as a cartographer, lost the job and had been piecing together income doing things like helping Geri Taylor with photo editing. She was good taking the photographs but kept having lapses loading them into the computer and editing them. Some days the whole process was an uncharted wilderness.
Clouds had begun to smear the sky and cover the sun. They hiked on around a bend. Then they paused, and Ms. Taylor tilted her head back to peer at a bird hesitant in a shivering tree. She took a quick photo.
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 her favorite, one of a hummingbird, as gifts.
One thing nagging at her was finding purpose in her life, a purpose to replace her career. She never would have retired in her mid-60s had Alzheimer’s not begun to mess with her. She loved her work, loved the idea of work. She never wanted to simply walk the sidelines.
The fluttering birds were wonderful. But were they enough? She didn’t think so, but hadn’t yet imagined what could be.
Certainly, the photography was a salve. When she immersed herself in it, everything was different. There was a constancy, not the flux of the disease. The world around her seemed to relax. Indeed, the Alzheimer’s felt oddly absent, somehow collapsed in on itself, not able to touch her and taunt her. With her birds, there was no need to scrabble for the right word. She didn’t have to talk to the birds, just observe their generous beauty.
As she liked to say, “For me, the disease doesn’t exist when I’m taking and editing pictures.”
Ms. Taylor put her best photos on cards and gave her favorite, one of a hummingbird, as gifts.
How she adored her precious birds! It was only the names. She once knew them so well, and now many of them had been rinsed from her memory.
They lingered for a while in a remote spot, waiting for activity. Bird turnout was on the light side. Happened that way sometimes.
“I didn’t expect to see a tremendous rush,” Ms. Felix said. “But this is pathetic.”
“One of my best pictures was taken right there,” Ms. Taylor said.
“Maybe it’ll happen again,” Ms. Felix said.
Glancing around, Ms. Felix said: “Bird alert. Fox sparrow in the path.”
“Is that what he is?” Ms. Taylor said. “He’s a big boy.”
The bird posed there beside some spindly trees, as if it had arrived for their amusement. Point and click.
Ms. Taylor squinted at her phone. Always did that, checking for forgotten plans on her calendar. “I even use it to remind me who I talked to,” she said. “I always check, because I will end up calling the same person or sending the same email twice.”
She quietly chuckled at how the disease always had the advantage on her, didn’t give ground willingly. “There are so many ways I can foul up,” she said. “The pants I put on today, I don’t recognize them. But they were in my closet. They’re the right size. They must be mine. I must have bought them.”
Mood shifts typically accompany the condition, people gaining rough edges, but her mood had been stable. She said: “At the beginning, Jim told me, ‘You don’t suffer fools as well.’ I was a bit trigger-happy. I’ve learned to control it. I put on my big girl’s outfit and take it. At least once a week something will fluster me and I’ll say, ‘This is ridiculous, and I’m going to write a letter.’ I have ideas and suggestions on how to handle just about everything in the world. But I don’t write the letters. I forget.”
They took a break at a snack stand. Chatting, she confided that she had lost her ego. She raised it casually, as if it were a kitchen utensil she had mislaid and would find later. Something had loosened in her and she had discovered indifference, and she was good with that. This change had been intensifying for a while, bringing her an ingenious freedom.
“Alzheimer’s brings on apathy is what I find,” she said. “Years ago, I definitely had more of an ego. Now I don’t have an idea of myself. And so I have less of an ego. Frankly, I don’t care what people think of me. I’m more in a survival mode, one foot in front of the other. Don’t spill the coffee.”
This idea that Alzheimer’s swallowed up the ego was her own unproven postulate. “I don’t know why this is,” she said. “But I’ve tested it with a few other people with Alzheimer’s, and they say the same thing. It’s our dirty little secret.”
So Ms. Taylor didn’t care what people thought of her?
“I don’t know if I totally don’t care,” she said. “But I’m as close to it as I ever thought I could be.”
TTHE CARINGKIND ORGANIZATION’S caregiver workshop began in the training room just after 5:30 p.m. Chairs were bunched around pushed-together tables. There were eight participants, Jim Taylor among them.
From the start, he hadn’t wanted to enlist in a caregiver support group, to spend week after week digesting the harrowing details of the future, learning about what duties awaited. “For some people, knowing everything is a comfort,” he explained. “That’s not for me. Hearing more about what the disease looks like will not be constructive. I know what it will look like. Helping them get dressed. Helping them go to the bathroom. I know. Who doesn’t know?”
This, though, seemed worthwhile and something he could handle, just two sessions to exchange clarifying information for family or partners of someone in the early stage, before caregiving became a vocation.
The hum of voices ceased, and Lauren Volkmer, a dementia-care trainer, passed out material. She told the participants that eventually they would need support, too. “You can only bend so far before you break,” she said.
She mentioned that one of the books she often provided caregivers was “The 36-Hour Day,” by Nancy L. Mace and Peter V. Rabins, a popular guide whose unnerving title injected some gravity in the room. She assured them they were not there yet.
Ms. Volkmer invited sharing. Anything at all. 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.
People sharing their issues, being daringly intimate from their insider’s view, drawing solace from the common ground.
One frustrated woman, caring for her husband, said with a quaver in her voice: “You’re left on your own with this. You’re alone. You’re left with zip. You’re looking all the time, watching — oh you repeated that two times, you repeated that three times. I don’t like it.”
Another woman: “He probably doesn’t like it, either.”
The first woman: “They say he could go, whomp, straight down. It stinks. I’m sorry. I’m really angry.”
There was no one way to react to this disease. It hit all the emotions.
Now Ms. Volkmer brought up the organization’s medical alert program. Wandering is common with Alzheimer’s. It can happen if there is a disruption in one’s routine — say the train doesn’t stop at the usual stop, or you go into a public bathroom through one door and come out through a different one. The organization deals with 350 missing people a year, 99 percent of whom it says are found. It recommends that everyone get an identification bracelet no matter how early a patient’s condition.
Mr. Taylor said he liked the idea but wasn’t sure how to get his wife onboard. Then he said that she had woken up the other night from a bad dream and felt disoriented, and that she said she had been thinking and that she wanted one of those bracelets.
Next, Ms. Volkmer said she would like everyone to try a little exercise, prefacing it by saying, “This is not a test to see if you have Alzheimer’s.”
She handed everyone two sheets of paper. Each contained a large star drawn in double lines. She asked them to draw a line between those double lines, tracing the outline of the star.
Once they had finished, she glanced over them and asked how they felt about the experience. Back came their clipped answers:
“Zippo for me.”
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, of course, was to let them experience a small taste of what it was like to have dementia, to promote understanding and empathy. (There are other exercises, like donning goggles to simulate vision deterioration and wearing gloves with popcorn kernels in them to replicate worsening sensory abilities.)
As he fumbled his way through the star exercise, Mr. Taylor said, “This is like driving a U-Haul trailer in reverse.”
Ms. Volkmer said: “I once had a dental hygienist in my class, and she did it perfectly and ruined it. Because she’s used to working backward with a mirror.”
The results were appalling, lines scooting all over the place.
Again, Ms. Volkmer asked how they felt.
Ms. Volkmer said, “It’s almost ludicrous, isn’t it?”
The piqued woman asked, “So is this how they feel, people with Alzheimer’s?”
Ms. Volkmer said: “I would put that back to you. What do you think?”
The woman was quiet. She got it. “Yes,” she said in a soft voice, “I guess it must be.”
Ms. Taylor in Stewart State Forest in Newburgh, N.Y., last year.
DURING A RUMINANT moment, Geri Taylor sat and, as an exercise, wrote down how she had changed. She called it: “Things I Do Differently as a Result of Diminished Capacity.”
The bulletinlike inspection report clarified for her who she now was. She found it sobering, for it caused her to realize just how reliant on others the slow drip of betrayals had made her, and that wounded her hard pride.
The log was two full pages. There were the expected entries, like not driving, not traveling alone (except by subway, bus or Metro-North train), simplifying her book choices, planning very carefully for outside activities (“always carry the same ‘highway bag,’” “constantly checking my things when I am out — have lost my vest, boots, watch and glasses in past nine months — very unusual”).
The list also contained some upbeat aspects. For instance, she put down how she cherished friends and family more than ever: “Daily call, email and text family and friends at a rate of 2-3 daily.”
And she listed something unexpected: “Do take housework more seriously and spend more time.” She cited the elements of housework as “an escape to simpler things” and how they were “time away from people and restful.” The dust and laundry, after all, didn’t judge her limitations, her spotty memory. So she found delight and gratification, even intoxication, in her triumphs over specks of dust and blemished counters.
“I can’t manage the bills, and I can’t manage the schedule,” she said. “But this is something I can do, and I can do well. So I’ve embraced it more. It’s identity. It’s a role I can still assume.”
She pointed out, “And most of the time, you can sing!”
As she wiped down counters and vacuumed the floor and changed bedsheets, she liked to sing whatever drifted through her mind (“Sometimes it’s disturbing what goes through my mind”).
They were old hymns. Show tunes. “Zip-a-Dee-Doo-Dah.” “Amazing Grace.” A favorite was “Barbara Allen,” an English ballad about a man dying as he pined for the love of a woman. Grim, all right, but she liked it just fine for the tune, which suited her voice, a second soprano alto. So she cleaned with gusto and great pleasure. And she sang.
FRIDAY ARRIVED, and things were slow. Her son, Lloyd Widmer, came to visit her in Connecticut. The Taylors own a cozy, tree-rimmed house on Candlewood Lake in Sherman.
Ms. Taylor wanted to thin out the closets, see what her son wished to salvage. It was part of her determination to lighten the stored threads of her life while she could, clear the decks. It was winter weather, late 2014, chilly inside. The furnace had broken, the summoned repairman was on the way.
Mr. Widmer is companionable and chatty with an engaging smile. When he was in high school he had wanted to be a pilot, but was told his asthma and a mild heart issue disqualified him. He satisfies the urge by continuing to play pilot simulation games. When she could, Ms. Taylor would visit him and go hiking, catch up that way.
Ms. Taylor with her son, Lloyd Widmer, in 2015. The previous year, they combed through her effects, part of her determination to lighten the stored threads of her life while she still could.
Sitting side by side, they combed desultorily through oddments dusted with memories — his school yearbooks, clippings resurrecting high school baseball feats, a cassette tape of the “Star Wars” Christmas album. Here was a framed photograph of Ms. Taylor’s grandfather and great-grandfather. And a tape of Ms. Taylor and Mr. Widmer singing “A Bushel and a Peck” from the musical “Guys and Dolls.”
“That can stay with you,” he said.
“Thanks a lot,” she said. “It would be hard to part with it.”
Earrings. She knew their origin at once, a high school classmate she had been engaged to. “He was drafted during the Vietnam era,” she said. “He was gone for like a year and a half, and I didn’t hear from him. So I married his best friend.”
And, oh yes, here was a stack of old photos of the talking dog. Not every extended family has a pet that speaks, but hers did. Her uncle from Germany, Lloyd Bonsall, after whom she named Mr. Widmer, owned Mikey, a boxer who seemingly spoke several words. The dog had acquired a certain fame, even been on German TV.
“I never would have believed it until I was sitting on the couch next to the dog and it said ‘Mama,’” Ms. Taylor said. “I was stunned. I still haven’t fully recovered.”
A talking dog. She had to laugh. It got her reflecting on her own speech. She had always been so meticulous about choosing just the right words. That had become impossible. “I had to tell myself, Good enough is good enough,” she said. “I’m on the good-enough word program. I hope you like the words I picked, because that’s what you’re getting. And you know what? I realized people don’t listen that carefully anyway. I get the point across.”
Once they finished the sort and pick, a good chunk of the fat pile destined for the trash, she talked about “Still Alice,” the movie starring Julianne Moore about a woman with early-onset Alzheimer’s. She deliberately saw it alone, because she didn’t want companions to project what they saw onto her. She very much enjoyed it.
“When I came out, I felt so calm,” she said. “I felt as if I had gone to a foreign country and had met someone from home. It was so realistic — the grappling for words and everything. It wasn’t sentimentalized. It was straight on. I liked that the husband walked away at the end. A lot of people walk away. It’s what happens.”
Mr. Widmer said, “It sounds like must-miss TV for me.”
“Well,” she said, “it was very well done.”
“I don’t need someone else’s opinion of this,” he said. “I’m watching it. I don’t want to be swayed in how I’ll deal with you.”
She had a fixed idea of what she desired, no matter where the disease went. She knew some people with Alzheimer’s wanted their lives ended. Not she. “I have a major philosophical difference with that,” she said once. “I see myself as part of an organism that is the family. I’m part of this connection. I don’t just say, Lights out, that’s it. If I just sit and hum tunes and that’s it, well, that’s still me.”
Arranged at the dining table, they ate fat sandwiches from the IGA. Cookies for dessert. She had always enjoyed a good cookie, but in her new state she was often fatigued and sugar invigorated her. “I’ve gone from being a cookie person to a cookie every day and sometimes two cookies a day,” she said. “Quick energy.”
The afternoon went. In the cold air, her son packed up the car with his memorabilia. It smelled like rain.
She mentioned that Mr. Taylor had recently read an item in the newspaper about a Phase I clinical trial, a very early-stage study for an experimental drug. This was a new thing on her mind, a new project. 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 hoped to be one of the more promising possibilities in a field littered with disappointments.
Right away, Ms. Taylor had started trawling the Internet and learned that part of the trial was underway at Yale-New Haven Hospital.
A few days after her son’s visit, she called Yale and learned that a few slots were still open. Maybe one could be hers. Soon, she was in New Haven for testing. She found out that had she waited another 48 hours to call, she would have been out of luck.
The results of the Mini Mental State Examination, a measure of cognition, placed her in the mild stage of Alzheimer’s, the appropriate group. A PET scan confirmed that she had amyloid buildup in her brain, another prerequisite for the trial.
But the candidates needed at this juncture were those who also had the gene variant known as ApoE4, which increases the risk of developing late-onset Alzheimer’s. So she was tested for it. A positive result would be her one ticket in. The answer would come in a few weeks.
This felt like hope and it had a potent allure for her, the possibility, long shot that it might be, that the drug might negotiate some sort of truce with this disease. She very much wanted in.
One thing the Taylors did was buy a modest amount of Biogen stock. Their financial adviser frowned on the choice, thinking it expensive. But they did it for emotional reasons — a tiny vote of confidence, a gesture that might change the calculus and bring them the luck they needed.
In Search of Purpose
“I know the tide is going out on my memory,” Geri Taylor said.
THE SEA RISE condo complex in Jupiter, Fla., was nicely situated. It was at the stub end of a winding street, a short walk to the ocean. Unit D404 was a neat one-bedroom. A white dry-erase board was clamped to the wall near the entrance, scribbled with reminders, phone numbers, computer passwords. Safeguards for the patchy mind.
The Taylors took the rental for January and February of last year to escape the cold. They drove down, saving on airfare and the cost of renting a car there.
A fine Florida day, and they wanted to go to the pool.
Ms. Taylor said: “You go down. I need to think about what I want to bring, and I can’t think with other people here. Gets me all confused, and I bring the wrong things.”
Mr. Taylor had noticed this about her, also how recently she was sapped of energy and would forget what day or month it was. Her life went like that. Discontinuities from her Alzheimer’s disease.
Ms. Taylor had gotten the awaited news from Yale. It was bittersweet. Her acceptance to the drug study meant she had the gene ApoE4. To her surprise, she had two copies, meaning she had inherited it from both parents. Her parents were dead, and only her father had gotten the disease.
That she had the variant from both of them meant that her son had it for sure. One of the genes is believed to raise the risk for Alzheimer’s by about three times; two increases it by as much as 10 to 15 times.
“I had two levels of reaction,” she said. “I was worried if I didn’t have the gene, then what the heck was going on? Maybe I had a brain tumor or some variant of Alzheimer’s that they didn’t know about. I wanted to be in the known group. I’m glad to get in the study. Then I was shocked that I got it from both parents. And now my son definitely has the gene. That saddens me.”
She wouldn’t know whether she would receive the drug or a placebo, though because of the way the trial was structured, she understood that the odds of getting the treatment were high. Either way, she would be entitled to the actual drug for three and a half years after the yearlong study period.
They sat out by the communal pool, watching a willowy neighbor execute laps. In two days, they were going to give a dinner talk about living with Alzheimer’s at the nearby Unitarian Universalist church that one of Mr. Taylor’s sisters belonged to. They had at first been hesitant, feeling a wedge of anxiety about engaging with the public this way. Yet it was a friendly audience, and they were looking forward to it. If it went well, perhaps it was something they could keep doing. Maybe how they were figuring out this disease could help others.
Mr. Taylor fired up his tablet. Bowed over the screen, he tapped away, fiddling with the presentation. Each had a part. He planned to speak without notes. With her melting memory, Ms. Taylor found herself unable to memorize a solitary paragraph. She had scrolled through the script several times, and each time it remained foreign to her, even though she had written it. She would have to read her part.
Mr. Taylor was content to bake in the mellow sun and the moderate breeze. Restless, Ms. Taylor headed for the ocean. Under puffy white clouds, she ambled along the gnarled coastline, leaving dull footprints in the soft sand. The wrinkled waves slapped the sand and retreated.
She had quit driving entirely, no longer trusting herself. In fact, since her minor accident the previous July, her first ever, she had driven only twice. She was at peace with the decision, knowing it was best.
Her nights of late had been plagued by savage nightmares populated with villains she couldn’t identify. She dreaded bedtime. She thought it was the Aricept medication she took before bed. She spoke to her doctor and suggested taking half her pill at night and half in the morning. He signed off, and it seemed to be working. Last evening, the nightmares had retreated, and no fears yanked her awake.
Some skittering birds caught her eye, and she paused to snap pictures, then sank back on her heels. “They look bored, if birds can get bored,” she said.
She greeted a passer-by, a pug-nosed man walking his dog. Still loved to engage everyone, often even got around to her condition. It bothered her, though, the standard reactions, of which there were two:
“Oh, you’re kidding. You don’t seem like there’s anything wrong with you.”
She felt as if she had to prosecute her case, like a lawyer before a frowning jury, to meticulously offer up the evidence to get the rightful verdict. Stop telling her she didn’t have it!
“Oh really. You know I’ve been having some memory problems myself and been wondering. The other day I went into the kitchen and couldn’t for the life of me remember why.”
Oh, O.K., so already it’s about you. Let’s talk about you!
There were times she felt a field guide was needed to teach people the rudiments of how to respond.
The other day, she bumped into a sun-wrinkled local resident and mentioned her Alzheimer’s. Politely, he asked what sort of symptoms she experienced, how she was handling them.
Well, finally, she thought. That was the way to do it.
Ms. Taylor in Jupiter, Fla., where she and her husband traveled in winter 2015 to escape the cold.
THE DAY of their presentation came up warm and sunny. They chose some touristic diversions, beginning with the turtle hospital. The Loggerhead Marinelife Center is a beachside ocean conservation and research organization that rehabilitates hurt sea turtles. Each crippled turtle is assigned to one of a mass of pools. The Taylors craned in for a look.
The back stories were frightful. Mayflower lost part of his left front flipper from frostbite. Reef was struck by a propeller, paralyzing his back flipper. C. C. had a fishing hook stuck in his esophagus. They rippled through their tranquil pools, mending, waiting for their release back to the sea.
The guides poured out deep stores of turtle information. Ms. Taylor had been there in past years, but the facts were fresh to her with her mind polluted by Alzheimer’s. Yes, all roads wound back to the disease.
Later, they drove to Grassy Waters Preserve, a favorite of hers. The quiet and solitude calmed her mind. After a nap, it was time to head to the church.
Some three dozen people, casually dressed, squeezed into the event space at the First Unitarian Universalist Congregation of the Palm Beaches. The room had been set up with wiped-down tables and plump trays of catered pasta.
Once the crowd had filled their stomachs, the buzz of voices ceased and the Taylors told their story. Ms. Taylor sat in a long-legged chair. When she stood too long, she got tremors.
Mr. Taylor 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 that people with Alzheimer’s went through, how they chose forward as the only sensible direction to follow. The small details drew good laughs. How Ms. Taylor kept confusing their toothbrushes and finally threw away Mr. Taylor’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. She said that when a friend pelted her with multiple questions, it left her baffled, and she advised her, “Pick one.”
She said: “Standing next to, smiling at, squeezing an arm and always saying: ‘Hi,’ ‘I know,’ ‘I’m glad you’re here,’ ‘I’m your friend!’ With an Alzheimer’s person, these words are very important and will actually help.”
Part of the format had Mr. Taylor asking questions, and his wife answering them.
“So, Geri, how do you live without sadness?” he asked her.
“We all face the same destiny,” she said. “Some of us know more particularly what might be the cause, others are still, as I like to say, ‘free-range on the assigned options.’ My days are filled with gifts — a thank-you note from my niece, a hiccup from my newborn granddaughter, a call from my son on a weather warning and travel suggestions, a photo taken of a ruddy turnstone, a call from a friend, and the warmth and smile in my husband’s eyes when we say good night.”
She looked up to lock eyes with the audience, keeping her finger planted on her spot on the page, then went on: “The pain doesn’t go away, but I adjust to it day by day, making changes and accommodations as necessary. This is not denial; this is like allowing other life functions to continue in the foreground, while a computer program is running in the background — the mind — quietly finding ways to adapt to the changes imposed on your life by Alzheimer’s.”
The audience, faces upturned, was hushed and rapt, hearing an aging couple tell about how they were torn up and united by a disease.
They took questions. Arms went up.
A man wanted to know if she did crossword puzzles and how good she was. She said she didn’t, they were too frustrating.
Laura Noel, Ms. Taylor’s niece, stuck up her hand. Two years ago, before Ms. Taylor began to share her condition widely, Ms. Noel was examining Ms. Taylor’s cellphone and saw she had taped on the back, “Jim, husband,” and his number, and “Lloyd, son,” and his number. She teased her, “What, you’re going to forget who your husband is?” Ms. Taylor gave her a strange look but didn’t explain. The next year, she told her.
When the Taylors had arrived in Florida that year, Ms. Noel heard that her aunt kept mixing up her mug with Mr. Taylor’s. She drank coffee; Mr. Taylor drank tea. He disliked residual coffee taste in his mug. So Ms. Noel, an artist, painted on Ms. Taylor’s mug: “Geri. Coffee. Milk. Sweet’N Lo.”
Ms. Noel asked, What does Ms. Taylor want to hear when she tells someone she has Alzheimer’s?
“I love you, anything I can do I’ll do,” she said. “The acceptance is more important than the particulars.”
When they finished, the applause went on for a while.
Ms. Taylor says her relationship with her husband is “better than ever” since learning that she has Alzheimer’s.
WITH OBLIGING traffic, the drive to New Haven from their apartment took under two hours. It was a bright squint of a day. The Taylors were quiet in the car, waking up.
The first week of March she had had her first monthly infusion in the trial of the Biogen drug, its formal name now aducanumab. So far, no side effects. Now, on April Fools’ Day, she was returning to Yale-New Haven Hospital for her second session, the new ritual added to her life.
Like last time, she would undoubtedly first suffer through the dreaded cognitive test. Be plied with lists of words and then asked to recall them. Shown simple pictures and asked to recite what she had seen. With each sequence, she might squeeze out two or three from her flickering memory and then admonish herself over her dreadful showing.
“When she pulls out the list of words, I want to just about cry,” Ms. Taylor said.
Last time, she did decently with bird names and pictures of hats. “I’ve been trying to figure out how to scam the test,” she said. “I’m hoping there are a lot of birds and hats, then maybe I’ll get two.
“I’ve been remembering the hats, but then they face the hats a different way to trick you. Then they’ll give you the same words and pictures three or four times to see if you’ve improved. That’s when depression sets in.”
Cars fizzed by, the mishmash of traffic. She gazed at the bland scenery. She sighed. “I used to be good at math,” she said, “and now when I go out to eat I just give the bill to who I’m eating with and tell them to figure out the tip, and I’ll sign it. Last time, I put the whole thing in my purse and the waitress was asking where’s the check, and I had to fumble through my purse for it.”
She twisted toward her husband and, managing a smile, said: “By the way, I just bought a bunch of toothpaste and deodorants so you won’t report me. I keep losing them.”
“Well, about time,” he said.
They were in good cheer. A few weeks before, Biogen announced at a neurology conference that an analysis of data on 166 patients over a year had shown positive results for a small early trial meant to measure the safety of the experimental drug. It found that the drug slowed cognitive decline and significantly 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.)
Tucked into the announcement, though, was the fact that those with the gene variant ApoE4 were more susceptible to localized swelling in the brain at higher dosages. That was Ms. Taylor.
At the office, excellent news. No cognitive testing. All that anguish for nothing. Just a quick physical.
The doctor noticed a slight tremor in Ms. Taylor’s hands. Old news, she said. “I’ve never been an anxious person,” she added. “A bad movie will upset me, that’s about it.”
At the hospital, she slid into a bed bathed in fluorescent light. As she lay outstretched, an IV needle went into her left arm. The infusion began.
Ms. Taylor getting an infusion at Yale-New Haven Hospital, where she was participating in a drug study.
Dr. Christopher H. van Dyck sat with her and Mr. Taylor. A geriatric psychiatrist, Dr. van Dyck founded the Alzheimer’s Disease Research Unit at the Yale School of Medicine in 1991, when the field was in its infancy, and remains its director, trying to get at the disease’s truth. He was drawn by intellectual curiosity and grandparents who had it.
By now, he had watched the parade of drug failures firsthand. Only four approved drugs to treat Alzheimer’s symptoms, not one that was entirely new since 2003. “It’s been a dark age,” he said. And yet there he sat, watching something potentially promising hanging from a bag and dripping into Ms. Taylor’s arm.
They asked him how the drug name was pronounced. He wasn’t sure. “Drug companies like names to be as difficult to pronounce as possible so people will use the brand name,” he said. “That’s what I heard.”
Mr. Taylor asked, “Have you been involved in all the failures?”
“Yes, I was involved in every failure,” he said with a wry smile.
“So it must be exciting to be involved in a success?”
“Well, a qualified success,” Dr. van Dyck said. “It’s still early.”
At this point, the drug, as well as others in testing, remained question marks. It would take years to know their genuine worth. He was rightly cautious.
“How are you feeling?” Dr. van Dyck asked Ms. Taylor.
“No itching? Nothing like the fire ants?”
“No. I know that sounds so obscure.” She was allergic to red ants and had been worried about whether any of the drug was derived from them.
She felt hopeful that the drug would work. 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 freeze-dried like this, I could live with that.”
And, sure, who wouldn’t grab that bargain? Live with “that,” with hunting furiously for words, misplacing her belongings, not driving, being always in the present? And why not? She knew nothing would repair her and return her to the person she had been, but being freeze-dried where she was, well, that was vastly better than the ugliness of the disease’s concluding stage.
Mr. Taylor quipped, “With this new drug, you may be going backward.”
Ms. Taylor said, “Well, I’m not taking care of you.”
The doctor asked about her habits. She allowed that she loved reading but confined herself to strictly linear books.
“I’m reading ‘Crime and Punishment,’” she said. “It’s a piece of cake. Same guy moaning and groaning all the way through.”
Dr. van Dyck turned to Mr. Taylor. What support groups was he attending, entwined as he was with the disease?
“I’ve avoided them,” he said. “I feel many caregivers are burdened. Act and talk burdened. Geri and I have decided to live as fully as long as we can.”
Ms. Taylor told him about the therapist she had gone to, who advised her not to tell anyone about her condition.
“Yes, there is a stigma,” Dr. van Dyck said. “People keep it a secret. And all the funding goes to cancer and heart disease and a minuscule amount to Alzheimer’s, whereas the cost to society is much greater from Alzheimer’s.”
SPRING BREAK in April. Mr. Taylor’s daughter Heidi Taylor and her children, Maggie and Leila, drove from Auburn, Me., to stay with them in New York, an annual rite. The five of them scrunched into the one-bedroom, one-bathroom apartment.
Ms. Taylor had just given the granddaughters the news about her condition over Christmas. They were not blindsided, having noticed bouts of absent-mindedness. Ms. Taylor was particularly close to Maggie, who was 15 to Leila’s 13. They had cooked together since she was 4.
Maggie knew a bit about the disease. In eighth grade, she did a project on Alzheimer’s. “It was cool,” she said.
A disquieting incident occurred when they were visiting over Christmas. Ms. Taylor came into the room where both girls were. She stared at Maggie with blank eyes, thinking she was her sister. Maggie picked up on it at once.
“You didn’t recognize me, did you?” she said.
“No, I didn’t,” Ms. Taylor said. “I just got confused.”
They walked the High Line in the unseasonably brisk air. The two girls breezed ahead, swirling in and out of the maze of strollers, people sipping fizzy drinks. It started to drizzle.
They ducked into a busy diner for a snack. Conversation drifted to Ms. Taylor’s festering but fading claustrophobia. At one point, it had been so bad she was unable to ride the subway.
She told about enrolling in exposure therapy, being accompanied by a counselor to Whole Foods and on the subway, being urged to squeeze a curling brush. As a distraction trick, she was advised to stare at people’s shoes and contemplate what they looked like. She invented her own version: “I looked at people’s hair and tried to decide what kind of pasta it looked like.” It helped.
“This sounds odd, but I think the Alzheimer’s has distracted me from some of these reactions,” she said. “I feel I have more emotional distance.”
The family laughed about a little adventure. The other day, they got back to the apartment and Ms. Taylor couldn’t find her phone. Maybe she had thrown it out with the trash in the hallway receptacle. They trudged to the basement, called the phone, eavesdropped at the smelly trash bags. Nothing. Still, she felt glad to have scoped out the basement, imagining she would be back there again, hunting for things she unintentionally threw out. The phone was in the apartment, having slid behind a table.
After their snack, they wandered around the stores. While the two girls nosed through the clothing racks with Ms. Taylor, Heidi Taylor mentioned how Maggie didn’t fully grasp her grandmother’s future. She worried about that. Recently they had watched the movie version of “The Notebook,” and at the end it shows a woman in the final grip of dementia. Maggie said, “Well, Geri won’t be like that.” She thought medication would stop it.
Her mother just said, “Well, we’ll see.”
The Taylors on their wedding day in 1993, with their children, from left, Mark Taylor, Heidi Taylor, Amy Taylor and Lloyd Widmer.
THE SWARM of relatives started arriving right on time, bucking family tradition. It was steamy, and the air had a baked odor to it. Mother’s Day was always when lots of relatives massed at the Connecticut house. Ms. Taylor cooked a big meal.
It would be different this year. Though her son, Lloyd Widmer, and his fiancée, Kim Hallenbeck, had been pushing her for several years to let them assist, she had shrugged them off. Yet she had been making mistakes in the kitchen. Two Mother’s Days ago, she forgot to put out a couple of courses. No, the disease took no holidays.
Finally, this time she had told them she would cook but could they please manage the day.
Turnout was good. Her brother and his wife were there from California, since they were visiting children and relatives nearby. Her sister had come from upstate New York. Nieces. Some 20 in all.
A list fastened to the refrigerator gave Ms. Hallenbeck and Mr. Widmer their duties. Ms. Taylor could no longer prepare even rudimentary dishes without consulting the instructions on the package. “I’m back and forth from the stove to the box, the stove to the box,” she said. “I have to think about every step. It’s like I’ve lost automatic. I’m on a stick shift.”
It was serve yourself, and people got their food and found seating in the soft light, forks clicking against plates, the soft murmur of voices. Mr. Taylor circulated, took some of them down the sloped property to the lake.
Ms. Taylor was enjoying it, into the moment. Still, fatigue engulfed her. Even on ordinary days her strength ebbed by afternoon, her battery not staying charged as long. She liked to nap. Or she might sit down in the silence of her home and read a magazine or camp out before the TV. She watched a lot more movies.
Sometimes she took a morning or an afternoon and, feeling a lassitude, vanished into herself. “I’ll just zone out,” she said. “Just stare. I’ll think I should be doing something and then shrug, Oh why bother, and I’ll stay sitting here.”
Alzheimer’s gets you every which way. She was having visual issues. She might sift through her cosmetics bag for eyeliner and look right at it but not recognize it. “I’ll be looking for the fork, and I’ll look at it and then look over the other way and it’s not there, and I’ll look back and it was where I was looking,” Ms. Taylor said. “That happens about once a day.” Another concern to add to the pile.
Part of getting kitchen help was to allow Ms. Taylor to visit more with her guests, some of whom she rarely saw. She mingled, but her condition undercut the rewards. “I forget names,” she said. “My own family! The town where my sister lives! For 40 years! I forget. So the conversations become very stilted. Sometimes it’s better I not have them.”
Group conversations especially frustrated her. “They’ll be talking about the stock market and in my mind I’ll be thinking what to say, and after I’m ready they’re on to politics, and then I get something ready for that and they’re talking about the weather,” she said. “It’s like, bait and switch, bait and switch. I’ve said nothing and yet I’m exhausted. My strategy is to talk first. Introduce a new subject before someone else beats me to it.”
The dance you had to do with this disease.
FIRST THEY DID song titles. Listen to a lyric and then name the song. Maria Mursch, the group leader, read one: “Where the deer and the antelope play.” She said it was fine to go ahead and sing it if that helped tease it out.
Someone did. Then several chimed in together: “Home on the Range.”
Next: “If they don’t win, it’s a shame.”
“Take Me Out to the Ball Game.”
They moved crisp and fast. They spit out their guesses, working together, ganging up on the clue until they had it cornered.
“I love this game,” one man said. “Brings back memories.” He shared a remembered episode related to one of the songs, and another participant said, beaming, “Every memory is a victory.”
Another man said, “How come you don’t have any Led Zeppelin lyrics?”
“I’ll have to look into that,” Ms. Mursch said.
Responding to a clue, one man sang an entire song, only to be informed: “That’s not the one we’re looking for. Although that was beautiful.”
Ms. Mursch lobbed out clues. You could practically hear brains whirring as, brows furrowed, they dredged through their wobbly memories for the answer. They drew some blanks, but identified most of them.
Ms. Taylor notched “Shine On Harvest Moon,” whereupon the entire group began singing it, until someone said, “O.K. already, enough.”
The Thursday Memory Works group at the CaringKind organization ran from 11 to 12:30. Eight participants, six men and two women. It had been more than a year since Geri Taylor had joined, and she was a faithful attendee, hurling herself into the mental games they played with zest. The time burned by fast.
Ms. Taylor found pushing sentences out more and more challenging. Yet she was not self-conscious there among those she thought of as “my people.” Outside this room, when she got frustrated cobbling together sentences, she occasionally would get crabby. “Twice in the last few months I reached such a level of frustration that I just flew off the handle and I was yelling at Jim because he was there,” she said.
With little preamble, Ms. Mursch segued from game to game. Words that start with the letter X. Phrases where the first word ends with A and the second word starts with B. Quiz games: vegetable named for a city in Peru; device that answers questions at a party. Modes of transportation that start with B. Jobs that start with T. Call out your answers.
Repetitions were common, not unexpected. “Do we have builder?”
“Do we have banker.”
Yes, it was there.
“Do we have banker?”
But never any exasperation from Ms. Mursch, who ministered to them with bubbly enthusiasm and blandishments. That is how you did it there. Everyone openly congratulated success. Cracked jokes in this space where Alzheimer’s ruled.
Comments traversed the room. One member was in a 12-step program, and he observed that what went on there had parallels, the denial, the stigma, the need to admit what you had in order to move forward. “The thing is, you’re not alone here,” he said. “That’s huge.”
“The humor is awesome in this group,” one man said.
Ms. Taylor said, “And the singing.”
“Well, I wouldn’t go that far,” someone remarked.
There is a time limit, too, the ticking clock of Alzheimer’s. People in Memory Works average about one and a half to two years before being weeded out, no longer able to do the games. Some hang on longer.
Ms. Taylor was closing in on the average, still very much an animated participant. To the eyes of others, she didn’t seem all that different from a year or two ago. But she was. Outwardly, she might appear unchanged, but internally she found she had to work harder, expend more energy, to get the same result. She was like a factory suffering from steadily diminishing productivity.
Usually Memory Works participants don’t volunteer to leave. They are told. One man had been tapped the previous month. He had been a member for nearly four years, mocking the odds. Of late, he had become withdrawn, baffled by the exercises. He was recommended to another organization that could meet his needs.
His absence was discussed with the group. Of particular interest was that there was somewhere else for him, that he wasn’t just discarded. For they anticipated their own crunchtime, the moment when they would get the tap on the shoulder.
Ms. Taylor at the Walk to End Alzheimer’s in Manhattan in 2015.
IN HER HEAD was this idea. For some time, she had chewed it over with her closest friend in Memory Works. He was 73, a retired software designer and the veteran of the group. He had been coming for four years. All of his original colleagues had deteriorated and departed.
They got along well. He thought of her as “the absolutely perfect individual.” He admired her vigilance, her spark, how things didn’t break her.
From their vantage, something was lopsided at the Alzheimer’s group and elsewhere. The embedded emphasis they saw was slanted almost entirely toward the caregiver (they preferred “care partner”) and barely addressed the one with the disease. They felt that they were the “done to.”
Yet they knew they had plenty of living to do, plenty of independent living. They were not useless. Hardly. And she felt that with the promise of new drugs like the one she was testing, people with Alzheimer’s might one day experience much lengthier early stages. She often thought she might even outrun the disease, that her heart, or cancer, might step in and claim Alzheimer’s goal.
She and her husband had given several more small talks on life with Alzheimer’s — at a Jewish center in New York and at a firehouse in Connecticut, and had lined up more, becoming restless apostles for how to live with it. But she felt the need to do more.
She and her friend wanted to see strategies identified and shared for navigating the everyday mundanities, wisdom to wrench survival out of this disease. Since they were the ones who had it, they felt they were the authorities. As her friend would say to her: “We can contribute. We don’t have to just sit there and take in things.”
Or as she would say: “Most books on Alzheimer’s are about the caregiver. I’ve been a caregiver all my life. I’m not interested in how someone had been a hero and now they can discount the person and start on their life.”
But, then again, who were they? She thought of her Memory Works comrades as the “underdogs.” Would anyone listen to the underdogs?
Last August, they met with two of the CaringKind staff members. Ms. Taylor gave her pitch.
One of the staff members said, “Would you like a support group?
“No,” Ms. Taylor said. That was the last thing she wanted.
She wanted a group to share strategies, an Alzheimer’s 101 tutorial, one that could be peer-driven. She said, “We don’t want to be done to, we want to do.”
She sensed skepticism. She told them that by not doing this, they were enabling dependency. Infantilizing them. They saw that she was serious. “They weren’t going to just pat Geri on the head,” she said.
Three weeks later, in September, CaringKind set up a series of three workshops to swap strategies — living with early-stage memory loss. For and by the underdogs.
Though the CaringKind staff members felt this did fill a gap, they anticipated faint interest, imagining maybe a half-dozen participants would show up. But 22 did.
They divided them into two groups, and for the third session everyone met together. A facilitator helped direct things. Strategies were called out and put on a white board. The picture was mixed. Most people had no strategies, didn’t seem to be thinking that way. “People spoke less about strategies than about voicing their problems,” Ms. Taylor said. “There was a lot of pent-up frustration, about forgetting the milk and the eggs.” There was interest expressed in clinical trials.
Many of the ideas in Ms. Taylor’s group came from her. How to rely on a smartphone, getting an electronic pill dispenser (Ms. Taylor had bought one from an online Alzheimer’s products store). The idea of socializing frequently, inventing reminders, getting physical exercise and, a big thing with her, finding a purpose.
At the final session, there was discussion of what they wanted.
There were a lot of unrealistic expectations. There was talk of how “they” should do this or do that. “They” should provide affordable, appealing housing, something other than nursing homes. Ms. Taylor thought, Well, there is no “they.”
One person said there ought to be billboards telling about them and their problems. The country should know. Another said there should be TV spots. Near the end, Ms. Taylor said maybe the group should have handbooks published detailing these strategies. That, at least, seemed doable.
The CaringKind staff members said they would do that. Ms. Taylor was pleased that a message had been put out. These strategies, she felt, could be compasses, leading them on.
She and her friend intended to keep pushing the organization. It was a beginning step. She knew that a lot more than 22 people needed this.
A wedding picture of Geraldine and Jim Taylor from 1993 at their apartment in Manhattan, NY.
THE THINGS that happen at the supermarket. In Connecticut, Jim Taylor went for groceries at the IGA. At a table outside, Carolyn DeRocco was pushing Alzheimer’s awareness. She oversaw programs and education at the Connecticut chapter of the Alzheimer’s Association. They got talking. He went home and got Ms. Taylor, and they returned and all talked.
A few months later, they were at the chapter’s offices in Southington. Eleonora Tornatore-Mikesh, the chief executive officer, was elsewhere but called in and was put on speakerphone. The Taylors told of their ambition to promote strategies and to brush off the stain of Alzheimer’s.
Ms. Tornatore-Mikesh told them about the organization’s new program that named “champions” each year to raise consciousness. It had groups for people with Alzheimer’s called GAP (Giving Alzheimer’s Purpose). Only about 65 participants, but the association was going to build it up.
Mr. Taylor said, “We’re amazed at how many people are still in the closet.”
Yes, Ms. Tornatore-Mikesh said, the association offers to do presentations at companies and the executives say, well, we don’t think we have anyone affected, and then it shows up and there are 80, 90 people waiting to listen. The stigma again. The denial. People who are hiding it.
Ms. Taylor spoke up, then stalled, her thought lost. “I’m sorry, my needle is stuck,” she said.
Her mind reset, she began afresh: “If it stays hidden, people don’t develop the strategies to compensate for the deficits. They just slowly pass into a state of inability.”
So true, Ms. DeRocco said, mentioning a woman who couldn’t remember where different dishes were stored so she put glass doors on the cabinets. And then 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. Mr. Taylor said his wife would get out of the shower and forget which towel on the rack was hers, so he told her, “I’ll put yours on the right because you’re always right.” She very much liked that strategy.
Just recently, Ms. Taylor had discovered the website To Whom I May Concern, the creation of Maureen Matthews, a psychiatric nurse. It arranges for people in the early stage of dementia to act out plays telling what it is like for them. Ms. Taylor clicked on some videos, at once felt the common spirit. The person saying, “People take that diagnosis and assume that you are now officially irrelevant.” And: “It’s not that we want people to treat us as if we have Alzheimer’s. But at the same time we want people to recognize that we have it. Confusing, right? Welcome to our world.” And: “The end stage is our future. But not today.”
Ms. Tornatore-Mikesh was now saying that the GAP members wanted a voice and the organization asked them, well, would they like a song about Alzheimer’s? The answer was fast and obvious. They brought in a songwriter and singer, Beth Styles, and, as it happens, Ms. Matthews, to gather ideas from the group. The attendees said it couldn’t be too upbeat — this was a monstrous disease and the song shouldn’t gild its misery. But they said there was still beauty for those who had it. There was still life. That had to be conveyed, too.
“We want people to hear the personal stories,” Ms. Tornatore-Mikesh said. “I’m a great mother. I’m a great wife. But I have Alzheimer’s disease. We feel the song will help.”
And so Ms. Styles wrote one. It was still unfinished, but nearly there. For the final version, the GAP members would sing the chorus. And then maybe radio stations would play it and people would understand.
Geri Taylor listened to all this, to a voice coming over a speakerphone saying she wanted what Geri Taylor wanted and desired her help. For her to come speak. Become one of their champions. Maybe become a representative to the national organization.
And Ms. Taylor’s face crinkled up and she began to cry. For what she wished for more than anything was for people with Alzheimer’s not to have to live in shame but in nobility and to be able to learn ways to carry on. And this woman was telling her she wished for it, too. Ms. Taylor had never cried for herself, never pitied herself for getting the disease, but this made her cry.
“I may not go stomping around the kitchen so much listening to you,” she said.
“We haven’t had our moment,” Ms. Tornatore-Mikesh said. “But we will.”
Did they want to hear the song?
Ms. DeRocco brought it up on her computer and pushed play. It was called “Life Is Beautiful.”
I woke up one morning.
Opened my eyes
It wasn’t quite the same
Things that came so naturally
I didn’t know by name.
The song was lovely and glorious in the story it told, and it pulled her in.
Look into my eyes
You’ll see memories
Of golden summer skies
Though I may not remember things that used to be
Life is beautiful
When you remember me.
Ms. Taylor bent her head toward the computer and listened wordlessly. Without looking, she reached over and took her husband’s hand.
THEY COMPARED their tremors. Held out their hands flat. Checked them out.
“Look, I’ve got yours beat,” one said.
“No, no, see this.”
They laughed. Well, it was one way to start lunch.
Outside the room, they kept in touch, the Memory Works crew. They anchored her. When she was away, she missed them. She would email them or call. Every other month or so, they met for lunch.
This was a fall day, the air cool and windless. They assembled at the Manhattan Diner on the Upper West Side, filing past the customers to colonize a booth in the back. Her friend the software designer and a social worker and a music teacher, some of them still living a clandestine existence, choosy about who should know what hid inside them. Ms. Taylor ordered waffles topped with whipped cream.
They talked about this, that. About that new member whose name was not Bill but something like that. About how do you carry martinis from the bar without spilling them, because, as Ms. Taylor said, “they’re so top-heavy, those glasses.”
Someone said, “You know, we get along so well.”
Ms. Taylor said, “Because we instantly know something very big about each other.”
Someone chimed in, “It drops a barrier.”
Ms. Taylor said: “Yes, it’s like, O.K., you know the worst thing about me, or the second-worst thing about me. You’re in on it.”
She nibbled at her waffles. She had been eating several smaller meals. “My appetite is getting diminished and picky,” she said. “Things don’t taste as good. Everything tastes neutral.”
Her drug trial was wrapping up — a Phase III trial had begun — and she was to get the real drug for sure. No clear-cut way yet to know if it had mattered. She knew her mind was always in emergency mode, her world blurring. She often asked her husband what day it was, then a little later would ask again. You are always losing with Alzheimer’s. But without the trial maybe she would be worse.
“In the last few months, I keep looking for things I just put away — a dish, shoes,” she said. “I put something away and turn around, and then I start the activity all over. And I can’t find that object because I already put it away. This happens like twice a day.”
She noticed more broken sentences. Alzheimer’s could wash away your language entirely. It happened to a woman who had been in Memory Works, who had gone mute; she now made only sounds. Ms. Taylor worried that one day her own thoughts would be imprisoned. “I’m always thinking about strategies,” she said. “Where are the bones buried? What can blow up?”
An idea came to her. Learn sign language. “You know, babies can learn to sign before they can talk,” she said. She told her husband and her son, suggested that all three acquire some basic signing so they could communicate if that day came. Soon after, her son sent her a video of himself signing “Good morning, mother.” Learned it from a YouTube video.
One of the others now said, “I don’t find myself so much searching for words as I do searching for the picture of what I did yesterday afternoon.”
Another: “The first thing that went for me was remembering restaurants. Do you remember the place we ate at two weeks ago? Uh, no!”
One woman mentioned she had gotten a quilt for being in a medical trial for an inhaler to dispense medication. It was an Alzheimer’s thing. People with Alzheimer’s often have nervous hands. People make quilts for them, something to occupy their agitated hands. Fidget quilts.
They talked about how they were doing with money.
Ms. Taylor: “I was at a bodega and got some bread and some milk. He told me how much. And I was totally befuddled. I just handed him a $20 bill and hoped for the best.”
One of the women: “The thing that freaked me out, I was writing a check and I looked at it and it wasn’t that it was messy, it wasn’t all the right things.”
A man: “I’m still balancing my checkbook, but if I make a withdrawal over a certain amount my stepson gets notified. You know, what’s this check for $30,000?”
The woman: “Like oh, no, not another car.”
Ms. Taylor: “So, good, you have a godfather.”
And so more than three years had rolled by since Geri Taylor had not recognized her face in the mirror and knew what had come. When she retired years ago, she wondered what would fill her days. In the past, she had jotted down her views of life and she had thought maybe she would refine those scribblings and match them with her bird photographs. But when she skimmed over the pages, they seemed disappointing.
But now, with those strategy sessions and her involvement in Connecticut, here was the answer plain as day. This would be a perfect second act, something that drew on her health care career: helping others deal with the darkness of Alzheimer’s, trying to reframe this disease. Having purpose, she felt, was the most stabilizing force for her. She realized Alzheimer’s itself could be her purpose.
“If you’re a carpenter,” she said, “you want to keep building cabinets.”
That was what she would do. Keep building cabinets.
Life had become a procession of ordinary pleasures. She found herself valuing beauty more viscerally and finding it beckoning everywhere. Things were less veiled. Every scrap of her life was special.
As was true there, with her people.
The diner thinned out as they chatted contentedly, nobody in a rush. One of them brought up the TV show “Limitless,” about a man who swallows a miracle pill and for 12 hours becomes the smartest person in the world and solves crimes.
Another said: “Oh, my, wouldn’t that be wonderful for us?”
One of the women chuckled: “Yes, even as a fantasy.”
“Just think of that,” Ms. Taylor said. “We would be the smartest of all.”
Article from (view videos here): http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?emc=eta1&_r=0