The advance of Alzheimer's and a life that fades

It all started with the image that the mirror returned to him one morning. Geri Taylor walked into the bathroom of her Manhattan apartment and happened to see her reflection of herself as she went through her daily routine. She went rigid with fright.

Why?

Not recognized.

She looked at herself with wide eyes and thought: “Am I that? No, its not me. Who is that person in the mirror?"

That happened at the end of 2012. She was 69 years old and was beginning to feel comfortable with her retirement life. She had been noticing some kind of cloud for some time that was confusing her and making it difficult for her to think. He had had some problems at work. She was a nurse, a nurse who worked her way up to become an executive in the health system. Once, in a meeting, his mind went blank and he didn't know what he was talking about, as if his brain were an engine that refused to turn on.

She said of that episode: “It's a good thing I was the boss and I was able to say: 'Enough with this topic. Sally, what are you up to?'”

Some of the tasks of daily living were difficult for her. She told her husband, Jim Taylor, that the curtains in the bedroom weren't working. And he explained to her that she was pulling on the wrong leash. Those kinds of scenes were repeated. In the end, when nothing worked anymore, he wrote on the wall what each strap was for.

Until one day he got off the subway at the stop between 14th Street and Seventh Avenue in New York, and he didn't know what he was doing there.

Yes. She was beginning to imagine that something was not quite right. But he kept his fears. She came to hide them from her husband, who attributed her bad memory to the infirmities of age. "I thought it was beginning to look like me, that for ten years I have been somewhat forgetful."

But not recognizing herself in the mirror... for Geri that was the key moment. She had to accept a terrible truth: what she felt were not ailments but symptoms of a disease.

She didn't have any more problems with the mirror, but she couldn't ignore that something important was going on. She shared her fears with her husband and made an appointment with a neurologist. “Until that moment I thought I could hide it. But that convinced me that I had to accept it.”

In November 2012, she saw the neurologist treating her migraines. The doctor listened to the symptoms, drew blood, and did a little mental status assessment: a simple test made up of basic questions and some easy command like counting backwards from one hundred in intervals of seven. He also asked her to take a piece of paper, fold it in two and place it on a spot on the floor next to her. He told her three words in common use and said that he would ask them again in a while, and he emphasized that request by pointing his finger at the head: remember them. That easy. When asked to repeat them, Geri only remembered one: beach. He had associated her with the doctor, he decided to call him Doctor Playa.

Her neurologist diagnosed her with mild cognitive weakness that often precedes Alzheimer's. That was the first label of his situation and he understood that it was the first stage of what was to come. His father, a paternal uncle, and a cousin all had Alzheimer's. He had long suspected that his turn was drawing near.

For all its cruelty, Alzheimer's disease strikes the brain of an American every 67 seconds. It is degenerative, incurable and democratic: it hits everyone equally. Patients live eight to 10 years longer on average. Some reach 20 years. According to figures from the World Health Organization, around the world there are about 44 million people with Alzheimer's or related disorders such as dementia. The disease is most common in Eastern Europe, followed closely by the North American region. According to estimates from the US Census Bureau, the number of Latinos with Alzheimer's could grow from the current figure of 200,000 to 1.3 million by 2050. It is believed that there are more than five million people in the United States who have it, and two thirds of sufferers are women. And Geri was about to join their ranks.

The disease and its dire consequences worsen to an awkward end that is difficult to understand. That is the familiar face of Alzheimer's disease: that of a person withering away with their head in knots in a nursing home, with memories of her growing further and further away and her plans for the future annulled.

But there is also a beginning, the waiting period. And there was Geri Taylor. A waiting person who still felt energetic enough to stay in control of her life. But what would happen next week? Next month? Next year? The disease would come to stay. The following year would also be there. And it would be forever. There is nothing easy in that situation; its messy and unpredictable progress leaves its marks.

One day he said that “the beginning is like entering purgatory. Like a grace period. You wait for something, something you don't want to happen. It is like the purgatory that precedes hell.

Geri is a hyperactive woman with a round face and hair swirling across her forehead. She speaks structured and thoughtful, agile and pleasant manners. He is 72 years old. She lives with her husband, also retired, near Lincoln Center in Manhattan and they have a weekend home in Connecticut.

Throughout her career in healthcare, she had seen the disease in action and now it was her turn to experience it. He would face her with determination.

Many times, those who are diagnosed with Alzheimer's disease fall into a state of deep grief and try to hide the symptoms; they withdraw from life before a world that prefers not to see what is happening.

But Geri was used to processing adversity, and she made a decision: She would face it bravely, intelligently, with her head held high, and without flinching. She would challenge Alzheimer's.

As he traversed that slippery terrain, he would be in for surprises, some ironic and some annoying. Also those that lift the spirits. He experienced many days of frustration but also flashes of joy. The disease, that new invisible companion, was much bigger than her and she would have to live under its shadow. It forced her to question her purpose in life and to fight for every possibility.

Her career was over. Mortality was becoming more and more real. Would this be a new beginning or would she become an Alzheimer's patient confined to the past?

Her husband couldn't adjust, as if his life had suddenly been changed. He couldn't even look into her eyes. He withdrew, his temper got the better of him, and she ended up feeling rejected.

He described it this way: “I did what men do: take refuge in my cave, stop communicating for a couple of weeks. I just thought I hadn't asked for this. I had married a nurse who was supposed to take care of me."

Two years younger than his wife, Jim is a gangly man with a warm voice, a narrow face, and neatly combed white hair.

To cut the tension between the two, a conversation was enough. They sat down and she told him face to face: "This is something that is going to develop but it hasn't yet."

That helped.

Yes, something important had happened. She had what she had but they were both still alive, together and with miles to go together.

So they began to walk through the first days of their new lives.

It wasn't just the memory that left her. Many see Alzheimer's as a memory disease, but part of its mystery goes much deeper. When she explained some of the symptoms to the doctor, he replied that "this is not a problem with memory, but with executive function."

And, in effect: you lose the concept of sequence, the steps that make up a process.

Like a man who starts shaving without creaming first.

There was no telling how fast the decline would happen. It is different for each case, until the disease achieves its final goal. The impact, as he learned, is determined by cognitive reserve, the mental capacities that a brain accumulates throughout a life marked by intelligence and stimulation. He felt he had reserves to spare, at least he hoped he did.

The doctor prescribed Aricept, a medication designed to improve cognitive ability. It seemed to speed up thinking, especially in the morning. But she wasn't sure if it was real. And it had side effects. He gave up alcohol due to nausea. He had never had much to drink but, in his own words, “he liked to party”.

She was fully aware that an earthquake had shaken her life and she knew that the disease could take her to hit bottom, especially in terms of unhappiness, if she allowed it to reach that point. But she still kept her optimism. never cried

Depression, she never doubted, would push her into places she didn't want to be. (“I can think of 10 things that would hurt me the most. My son could get hurt, the same could happen to my sister.”) The disease awakened his hunger for life.

“I'm not one of typical reactions,” he said. “And I actually felt a kind of relief knowing that I could do something about it. I tend to be quite intellectual and that gave me a false sense of control. I knew that my family and friends supported me. That my husband wasn't the type to run away."

So he looked ahead and resumed his interest in photography. She decided to spend more time with her friends.

Her husband spent Friday mornings discussing foreign policy at a Jewish community center, but decided to prioritize his interest in acting over being confined, as it would be, to caring for his wife. He signed up for theater classes. They felt that by doing these types of activities, the disease would enter their lives more coherently. Somehow, they wanted to live full days in the midst of a terrible storm.

His mood improved. Jim began creating an Alzheimer's to-do list. A way to catch up and take steps.

What do we tell our children? When? And our grandchildren? How long will we keep two houses? When will we need help? Review the will, make end-of-life decisions, think about home care.

And they began to organize them. Would they need a two-bedroom apartment for the time of permanent care? Would they keep the apartment and the house? Could you fit in a second bedroom with a living room makeover? They went to visit an apartment a few floors up where something like this had been done. They decided to stay and do works when necessary. His economic situation was comfortable but the disease has the ability to devour resources at high speed, especially at the end. She didn't want to end up in an institution but she knew it could happen. They would review the wills in due course and protect part of their property for their children.

And about telling? Geri had already started seeing a therapist to adjust to her withdrawal. In one of the sessions, he told her about Alzheimer's. The therapist told him, without hesitation, “Don't tell anyone. Your friends will distance themselves." That made his hair stand on end, as if there was something illegal or clandestine about suffering from Alzheimer's. He stopped seeing that therapist.

The couple wasn't comfortable with the secrecy surrounding the disease, so Geri decided she wouldn't present herself as a victim. "I decided to make the disease a part of my life without throwing in the towel."

I didn't know in what order I would tell it or how I would verbalize something full of terrifying connotations. Life becomes a script. Alzheimer's leaves its mark on everyone.

“I don't care what they think of me,” he would say. For her, Alzheimer's was just another fact of life. But he worried about the impact of the news on others, caught up in the current that causes the disease. She was also worried about how others would see her husband. Would they delete him from their invitations because, with his wife in the state she was in, they were no longer the same couple? She didn't want him to have to live with the stigma too.

They waited six months. She wanted time to adjust to her new life and her personality so she could share the news without her emotion getting the better of her. He wanted it to be obvious that he was still “in charge”.

So, at the party on July 4, 2013, they told their son from a previous marriage, and the two daughters and son from Jim's first marriage. They did it systematically. One by one. Together with their partners. Doing it separately was intentional. “Everyone wants to feel like you have an individual relationship with him or her. If you sit them together you are treating them like a pack of gum, you deny their individuality, they will react to what they see in their brothers and sisters. Dementia is an ugly image and I wanted everyone to react in their own way."

This was difficult news to receive. And everything was ordered. They didn't need many details. It was painful for her. I knew it caused them pain. Jim's children were: Mark, a civil rights lawyer who lived in Brooklyn with his wife and young daughter; Amy, a nurse living in New Jersey, and Heidi, a sociology professor living in Maine with her two daughters. They were all familiar with the disease.

Geri's son, Lloyd Widmer, a real estate appraiser who lived with his partner in Montgomery, New York, was not surprised. He had noticed certain holes in his memory and had joked about it. Now that she knew why, she wasn't going to walk away. He was an outgoing person and they had a fluid and open relationship. Geri used to joke that "I think before I was born he was talking to me."

And he continued with his jokes. Even more than before, to the point of making his girlfriend uncomfortable. But her mother didn't care. They were close. At 21, he broke his hip and for the first time he didn't feel invincible. That had brought them together a lot.

Geri decided to postpone the conversation with her grandchildren and continued with other relatives and close friends, slowly but surely widening the circle. It wasn't about putting an ad in the press that said, “Geri Taylor has Alzheimer's,” but she did want to be honest. Her therapist had told her not to tell anyone, but she was going to tell everyone.

Some received the news without blinking. Others faltered before such a harsh truth. Some tried to convince her otherwise.

He had to insist: yes, he had something that nobody wants to have.

A friend couldn't stop thinking about it. He called her and said, "I'm so angry... and you must be devastated."

A concerned friend of mine searched the internet for solutions and found coconut oil. Some research has found that it improves cognitive function; a doctor wrote a book on the subject. But Geri considers herself a "medicine snob" who disdains quack cures and magical thinking. She knew that coconut oil was harmless, and out of respect for her friend's good intentions, she began to drink it. "At my age, what harm could it do to me?" she asked herself.

Until he forgot about it and moved on to something else.

During his confession tour, he discovered a painful truth. Some of his friends showed early symptoms of the disease. We're on the same path, he thought.

Geri Taylor was born in Brooklyn and lived there until she was five years old, then her family – the Wilsons – toured various towns on Long Island: Valley Stream, Levittown and Massapequa. She had a brother and a sister, she was the one in the middle. His father was a manager at a Woolworth's store. He had Tourette's syndrome since he was 8 years old. Serious. It kept him in check to the point where he could work, but not enough for Geri to want to invite her friends over. Her father was an unquestionably happy person and she inherited that happiness.

Her relationship with her mother was more complex. She worked in a bank, she was an accountant. He had a personality disorder. Her mood could change from one moment to the next, unpredictable, as warm as aggressive. “It was like, come here, honey, so I can stab you. A greeting from my mother could be a humiliation”.

That strained relationship made her want to leave home as soon as possible. She had dreams, she wanted a career in math or literature. His mother, the boss at home, thought he should skip college and get a job. "I was a happy little girl who was treated like an accessory by her mother."

She wanted to become a nurse. She had saved $300, enough at the time to get into nursing school, so that was the only viable option to escape her mother's control.

His parents divorced. The two remarried. They died when they were over 70 years old. The strokes that killed them happened within months of each other. His father's dementia worsened at age 66 and was well advanced when he died in a nursing home. His sister lives in upstate New York, his brother in California. Neither of them has symptoms of Alzheimer's.

After starting work as a nurse and completing a master's degree in public health, she moved into administrative positions. She went on to become Executive Vice President of Beth Abraham Health Services and Executive Vice President of the Jewish Guild for the Blind. One of his main achievements was creating home care programs to provide quality care to low-income seniors.

When he realized that his memory was failing, he retired from any managerial position and decided to dedicate himself to approving projects until he retired at age 65. She worked as a consultant for several more years. She worked in home care and adult care programs.

Jim Taylor came into her life through the children. He happened 23 years ago. They both lived in White Plains and their sons went to the same scout group. She was one of the leaders of the club. Over the summer they both signed up to go to a zoo camp. Jim called Geri to share a ride and she offered to give them all a ride.

Jim asked a mutual friend if she was single. In fact, she had just separated from her second husband. He had been divorced for eight years and had grown up in a small town, Cynthiana, Kentucky. He had worked at IBM for 30 years, until his retirement in 1999. He had been a financial analyst. His specialty, software pricing strategy. He hadn't been very lucky. “In my first marriage I was not happy. I was unhappy and I thought that person could make me happy. While I was single I got by with my unhappiness. The first few years of bachelorhood I was lonely and unhappy. I was improving. Read. I felt better. Some Buddhism and self-help books. I went to some retreats and had therapy for a couple of years."

It was he who called her to ask if she was free one of those days. She asked him if he wanted to go to a Mozart festival. I had two tickets. Were. He knew it from the first date. A year later, they got married. It was 1993.

Each of Geri's two previous marriages had lasted 13 years. She knew exactly how long a partner lasted for her. He had a sentence: he was only the husband in turn, subject to annual re-election until he reached his fourteenth year in office.

The others couldn't see it, but she knew it. She began to slip, the disease took its toll, she felt less and less like herself. There were unattainable words, phrases that coiled up and didn't want to come out, objects that vanished: keys, glasses, earrings. He would lose things and then forget what he had lost… until he had lost it.

When he returned from a trip, he put his suitcase in the closet, full of clothes. Weeks passed. He didn't miss what was inside, until one day he couldn't find his glasses. Well, maybe they were in the suitcase. He opened the zipper and discovered all those folded clothes.

Her life was starting to fall apart.

“My memory stream is fading,” he used to say.

I was having trouble with time ellipses. He found it impossible to differentiate between the past, the present and the future. Time was beginning to melt into one piece. She always felt in the present, as if her life were made up of a single moment rolled back on itself. Breakfast, the shower, lunch, dinner, the movie, shopping, all mixed up and at the same time. It was as if, even without trying, he had become a Buddhist.

“The clock in my head doesn't work anymore” is how she describes it. “The concept of how long an activity takes disappears. It's morning, then noon, and I think morning was yesterday. Over time, everything becomes present. If you ask me what I'm going to do at three, I'll have to make it up."

If she'd seen anyone that morning, by noon she'd wonder if another day had passed. “I could be talking to you and shopping and she wouldn't be sure if it was the same day. For example, now, I can't reconstruct yesterday except for one detail, that the air conditioner sounded like it was going to explode. Because my life was about to end. I can't remember what happened before. And I don't think about what will happen next. Because I do not know".

He frowned. “What has to do with time is the part where I feel most removed from myself and from other people. Sometimes I feel like some kind of missing atom. Like I'm not doing anything, because I float from one thing to another and then I don't remember what I did. And you'll say, 'Well, write it down,' but then I'll read the paper and wonder, 'What's that?'”

To untangle the confusions that crept into the fabric of his life, he gave himself small victories and savored them. “I've been washing the towels and sheets more often because I can't remember when I last did it. I forget how much food we have. I check it more often. I know Jim checks the food a lot more often."

Until then, your mind had been your best organizational tool. But now he was a mess. As if the wind from a storm had turned everything upside down. “I had always remembered the telephone numbers, the addresses, what people paid for rent. And now I've forgotten."

He knew how to live with a good memory. Who knows how to live without her?

Your iPhone has become your new best friend. She turned to him at least 20 times a day and went through the calendar and the notes she wrote to herself, or the list of dates and names that she had never been so overloaded with. Where do I have to be? When? So that? Who do I have to call? He used the camera to take pictures of places and thus remember them. That was a huge improvement compared to his father's Alzheimer's, who had to return home several times in a police car.

In order to get through the minefield that his day-to-day life had become, he devised various tricks. “The other day, in the elevator, I saw two neighbors. I couldn't remember their names. I forgot about all the neighbors on my floor, there are 14 of them, so I thought it would be better if I came up with something. So last week I discovered this system: each person is associated with a member of my family. And I've been practicing. Eric, the neighbor next door. His name starts with the same letter as my father's name. Joe is my stepfather. And so. It is easy to handle. Aid".

The Caringkind Organization is headquartered in one of those towering office buildings on Lexington Avenue in the middle of Manhattan. It is also a place where people with the disease can go. Around 15,000 people arrive a year and they are only a small part of the 250,000 that the organization estimates have Alzheimer's (also add those who provide care and close relatives affected by the disease).

Many throw in the towel. They think there is nothing to do. Many others deny it. Their families also deny it. They wait too long before going to ask why their brain isn't working right.

Lou-Ellen Barkan, the leader of the organization (it was a chapter of the Alzheimer's Association at the time and later split), saw it in her own father. He had a number of weird symptoms, but he was always weird. What prompted the family to take him to the doctor was flipping through his checkbook. I hadn't organized it in months. He had written checks on behalf of social organizations that he had never supported before. For example, the one who supports those who paint with their mouths and feet.

When she started thinking about whether it would help to go to that organization, Geri wasn't entirely convinced. She saw the place as the destination of those who had fallen much deeper than she had into the dark world of disease. She hadn't reached that point yet.

Still, one blazingly sunny day in March 2014, he decided to go take a look. As soon as she talked a little with the people who worked there, she realized that she had been very wrong. It wasn't too soon. It was the right time. In such a crowded city, she knew these people. They were like her. They all walked in the shadow of Alzheimer's. “It was my people, it was the place where I belonged.”

So she got involved and signed up for several of their programs: Discover New York, a photography workshop. She also enrolled in one of the continuous memory workshops that practiced mental exercises for people in the initial phase of the disease. At first she was skeptical. I already knew everything about the memory games that some experts defend to recover the mental agility of brains that are beginning to lose plasticity. I had also read research questioning its usefulness. She felt they were annoying and didn't make sense.

Still he tried. And to her surprise, she liked it. The people seemed welcoming. He liked the exercises. She was quickly identified as the cheerful one of the group. The moderator explained in advance that the games would not stop the decline: they were there to have fun. One of the assistants whistled wonderfully and entertained the wait before the start of the sessions. Every Thursday at 11 in the morning he arrived at the place, sat down with his eight companions and played for an hour and a half.

Say words that start with B.

Say food names that start with M.

The best thing was not having to hide your limitations or expect acceptance. In the outside world, an increasingly strange and frightening place, the pages turned too fast and keeping up was a constant battle. "People say, 'What do you mean? Nothing's wrong with you,' but I always have something to hide."

From the outside, Alzheimer's sufferers are seen as broken people. But in the groups that meet behind those walls, everyone has it, Alzheimer's is normal. There, she felt protected, free of obstacles. Another participant called it "a safe place" and that's how she felt. In his words: "There's nothing like feeling different with your own people."

More than anything, people with slippery memories came to this sort of sanctuary to reassert their presence in the world, to feel that they were still useful. Geri found new meaning for her life by being surrounded by people who were going through the same thing as her.

Every Thursday the sessions were better. Not because of the games or because they did much good, but because of the collective spirit that was generated between the retired software developer, the lawyer and the writer. They supported each other, joked. It seemed inconceivable, but Geri had never had such a good time in a group.

He told others that “it's like a party. Everyone laughs and everyone is grateful to be with people like them, who can't find the right word or can't find the bus card”.

In that environment, full of life, sometimes I felt that they shouldn't feel so happy.

It was like everyone was stoned, high on Alzheimer's.

She was sitting in a chair in the living room, sipping a cup of coffee. Her husband was next to her, they talked surrounded by the changing light of the afternoon. The apartment was clean and tidy, one bedroom with extensive views. The sofa and the carpet, new. Your idea. She didn't want her husband wasting time remodeling old furniture when she couldn't do it anymore. His mindset was to live in the moment. She told him: “I have noticed that when you cannot remember something but you feel it, when your rationality goes away and your feelings appear, if you get frustrated or angry it is the worst, because there is emotional interference. In the memory workshops they told us a couple of weeks ago that if something rings a bell or you feel it, say so. I was looking for a word and I thought it sounded like a hamster, so I said it."

“Makes sense,” he replied.

His days became a series of wins and losses, with the ratio of each category fluctuating. “I totally forgot that the man who fixes the pipes was going to the house in Connecticut. I wrote it but forgot to look at the paper. I was meeting someone who was coming to replace a broken window and he was away from home. He was going to be there in five minutes and I was 20 minutes away. Luckily he was late."

The ovens in their two houses were different. The one in Connecticut had no timer. He forgot he was leaving things inside. One day he burned a bagel. They bought an oven with a timer. “It's not just that they're different, each one is different every day. When driving, looking for the switches, I get confused. I am not able to turn on the air conditioning. I leave the coffee to go to the bathroom and when I leave I make coffee again. And then I say to myself: ‘Where is the cup?'”

When putting on makeup, you forgot some product, like lipstick or blush, for example. It is a sequence. I had problems with the sequences. In sad moments, when he did something clumsily, he would break down. She proposed to her husband to go see a movie.

Her husband had always been the talker of the couple, she was much more withdrawn in day-to-day chatter. Now she was talking to everyone, even strangers, something new for her. “I think I started doing it unconsciously and the response has been positive.”

Her husband looked at her appreciatively and said: “The boss is gone. You come home and you tell me about all those people you've met at the photo shop." And she responds, wide-eyed. “I am not indiscreet. I haven't brought any cats home."

And he replies: “You haven't but you're a lot more uninhibited than you used to be. You do what you want, you say what you want, you don't mind hurting the sensitivity of others.

“I haven't, have I?”

“Not that I know of.”

“Okay.”

Jim said, "You know your time is running out and you've discovered that interacting with strangers is more enjoyable than you thought."

Still, they were optimistic.

“I know it sounds weird but I don't think Geri and I have ever had a better time in our marriage than this. We are much more dedicated to each other. The disease has given us that. It will be short and that's sad, but we don't focus on that."

And she replied: “We feel lucky at a time of bad luck.”

It was already night, the city lights twinkling outside. She got up from her chair and went to the kitchen for a plate. A few months earlier he had been in a craft store and noticed her. He said, "When I let go, I become who I could be."

He felt the need to buy that board. Her illness had set her fighting her very identity as pieces of her disappeared.

What kind of person was she if she couldn't remember names, couldn't use the oven, if she didn't know where she put that new shirt or that she had a new shirt?

The plaque convinced her that she could build something more, that she could detach herself from the past and not let it dominate the present. “If you keep thinking about who you were up until the time you got Alzheimer's, you'll feel frustration, decline, failure, a diminished personality. That's not good company. Sometimes I can't complete an idea. I might feel bad about it. If I have to measure who I was before I became this, I can't anymore. But if you omit that, you still are. And not necessarily a diminished self. You have to realize that it's not over yet,” Geri said.

She met two good friends in Chelsea for lunch. Then they would go to art galleries. Day to day. Toni Davis, a retired epidemiologist with the city's Health Department, and Ellen Weisburd, a retired attorney. She had met them nine years earlier in a book group that had already run out. He had told them what was happening a few months before. The two were stunned.

He was careful as he made his way to the table. Her walk had changed. He always felt one step away from falling to the ground. It was worse if he talked while walking. Once, he tripped and fell while he was talking with friends. His new rule: if he walked, he had to talk only what was strictly necessary.

The conversation was erratic. They passed from trivial subjects or others of great importance. They laughed. And that was another of her concerns: laughter confused her during conversations. I immediately forgot what they were talking about. But he loved to laugh.

Geri said that her husband was going to be out of town and she would be alone, but she planned to visit relatives. Ellen asked her how she planned to get there. And Geri told her that by train.

“I'm asking if you drive,” Ellen said. “I do when I need to,” Geri replied.

She had never been in an accident and was proud of it. A few months earlier, on a Manhattan freeway, her brain told her to follow the dashed lines instead of staying between them. For several meters, it occupied two lanes. Then he realized the mistake. In early July, she was visiting her sister in the northern part of the state and out of nowhere she collided with another car. There were no injuries or serious damage, but it was his fault and it hurt. “Just before the accident I noticed that the surface on the right was different,” he said. Was afraid.

Shortly after she was in the car with her husband when they came across road works, one of the workers asked her to stop the car with a flag. Although her husband told her to do it, she continued, because she felt an urgent need to talk to the man with the flag. Her husband's insistence made her stop. He was unable to explain his behavior. That same night, he suggested that she stop driving, that she was making mistakes. She got angry and told him that he always made mistakes, like driving too fast. That he passed on the right. Did he have something to complain about?

The next day, calming down and the weight of the inevitable taking over, Geri said she would drive a lot less, as little as possible.

And to the others he said: "Besides, I'm not going to take anyone with me because it distracts me to go with someone else."

Ellen: "I think I told you last time: you are the most precious cargo."

"I know, I don't drive much."

Ellen looked at her questioningly: “And how do you feel?”

Geri replied, “Okay.”

She took a sip of coffee. If he didn't drive, they asked, how would the market in Connecticut do?

"Sounds weird but I can canoe and then walk."

“An interesting way to go shopping,” said Toni.

And all three laughed.

Ellen:“How's Jim?”

“Well, it's strange, but since the diagnosis, our relationship has improved. He's better than ever,” Geri said.

Ellen: “You said that before.”

Geri: “We live in the present. We don't leave things for another time just because we don't have the mood for them and so on. I don't remember enough to postpone. There is no longer waiting for a better time to deliver bad news and then walking around with stress inside”.

Toni: “When you live in the present, you don't live with things that push you in another direction.”

Geri: “I don't want to say this lightly but there is a final point. And I am not going to let it arrive and there are things that remain unsaid.

Ellen: “I know what you mean. And this gives you permission to put everything on the table.”

Geri: “For Jim it's the same. We were talking about it this week. In many ways, Jim is happier than he's ever been."

They ate and Geri said, “You know, I could have kept this hidden for a while longer. Hide it and make excuses. But the notices I put on the wall to remind me how to roll up the blinds or the problem with the oven are there. And now Jim takes care of more things. He makes me calendars and checks them, he controls me. And he loves it. You already have the job you always wanted. I had always wanted to know what he was doing and, in that sense, everything is working well.

Ellen: "It's brave of you to be able to face it and tell others about it."

Geri: “It was hard at first.”

Ellen: "Tell yourself."

Toni: “When you told me, I didn't pay attention because you were just like me. Every time we see each other I lose something, the glasses or a brownie with nuts”.

Ellen: “I remember you saying that you had developed a knack for picking up the thread of a conversation.”

Geri: “I associate ideas.”

Toni: “A complete chain of ideas?”

Geri: “Sometimes it's just a word. The other day I put away my computer flash drive and told myself that I had to put it somewhere that I could associate with it. I put it in the record sleeve."

Ellen: “I would have put it next to a flashlight.”

Geri: “That's a good one. The truth is that I dont remember. And I said to myself, 'Where would the smart Geri have put it? What is it for? To copy photos. I copy the photos on CD. There it is, in the record sleeve.'”

“Brilliant. One other thing I wanted to mention, I don't know if she'll offend you,” Ellen said, and she showed her an iPhone app called “Find my friends”.

Geri: “No offense, I already have it.”

She had set it up with her husband, so he could know where she was over the phone in case he had to go looking for her if she got lost.”

Jim Taylor didn't know who he was or who was around him. Head bowed, chin tucked into his chest. Her arms hung limply on her legs. Silently, he shuffled around in a circle in the living room of a nursing home. Alzheimer's wandering. From time to time, he would walk up to a group and grab whatever was handy. A wall, a person, the air.

Among the sparse audience for the play, Geri Taylor was seated very close to Jim's daughter, Amy.

The scene was a strange twist. Jim had always been interested in the theater and had dabbled in it in amateur plays. I had recently taken classes. He wouldn't have done it if his wife hadn't contracted Alzheimer's, because that's when they decided to prioritize their interests while they had some time left.

She saw an ad in the classroom. They selected actors for a play. He thought: “Why not? I won't make it, but it will be fun to try." Also, the play was about Alzheimer's, which was now intruding on various aspects of his life. He had no reason to do it and at the same time he had all of them.

It was. And he was called in for a no-line role in which he played a dementia patient wandering the home. A requirement for the role was knowing how to shuffle like an Alzheimer's patient would. With the support of his wife, he rehearsed, succeeded, and did it. What a coincidence. Life could be interesting.

She decided she would act in this play and that would be enough.

Its title was “Henri,” written by Ryan Reid, a young playwright who was inspired by the dementia patients at the Isabella Nursing Home in Manhattan, where she had volunteered and where the play was being presented in late 2014. Her Grandpa had Alzheimer's.

When Reid saw the disease up close, he understood how horrible it is but also found a certain beauty in those who carried on despite it. That's what she wanted to tell. The play revolved around a music teacher named Henri. He opened with the agony of Alzheimer's and rewinded his life. Somehow, Jim didn't feel right pretending to be as upset as his wife would be. Partly because he couldn't imagine the future. Because he refused to even try. To prepare for their roles, the actors had gone to the Isabella to visit dementia patients to capture the extent of the disease. He preferred not to. She didn't want to start thinking about what was in store for her.

No, he saw the play as a performance and not as a prelude to reality. “I still don't think about what's coming. I don't want to be there."

Her daughter, Amy, was a bit concerned by that attitude. "Because he didn't want to imagine the end of the game, the real one," she said.

Geri had gone to one of the rehearsals with her son Lloyd, who found the opening scene with the Alzheimer's patients unbearable. He whispered to her fiancée, sitting next to her: "If the second act is like this, I'm going out."

There was a bar in the lobby. When the play was over, he went right there. The waiter asked if he wanted a drink. "Better not," he replied. I had to drive. And he said solemnly that a play about Alzheimer's was too much for him because his mother had the disease. The waiter looked at him with pity and a faint face. Lloyd said, "Maybe you should have a drink."

The play would run in Las Vegas for a week. The author was born there and the Taylors would attend. Geri felt nothing about the role of her husband. He didn't see it as a premonition of his future.

“It's impossible, he's not the same as he was 20 years ago, but I don't have the space to think about that. I can't imagine Jim in that situation. Of course it could happen. He could go faster than me, but I don't think: 'Oh, poor Jim. Since I never think about poor Geri, I can't feel something like that.

For now, Geri was just focused on acting. Was her husband dragging her feet? It seemed good to him, convincing. He took notes, made suggestions to improve the performance. (What's wrong with Henri's daughter? Would it be better to see the woman when she's on the phone?). She was getting off topic, this wasn't about her.

In Vegas, I didn't know how I'd react when I saw it in front of a real audience. Hands in her lap, Geri sat up and watched.

The rebirth of a woman She arrived in Las Vegas in the early hours of the afternoon: the city, excessive, made dizzy. In addition to the usual attractions, there was a rodeo championship and a music festival. Everything screamed action. Decades before, Geri had gone to the city, located on the edge of the mountains, that eats your money without any qualms about a work conference. Now the disease had brought her.

They had booked a room at the Plaza Hotel. He had already been dragging his feet on the construction site for a week. Geri had gone to attend one of the presentations. I had booked the same flight as someone I knew. For caution.

The Taylors were hungry and looked for a place to have dinner. Jim told him that the presentation had gone well. Acting, even in a modest role, excited him. She asked him if he had gambled. Just once, he replied. He had won $4 in blackjack.

It was cloudy. Jim had to get to the theater. She wanted to see the morning show the next day. The rest of the day would be his to discover things, he had to decide how to fill it.

With Alzheimer's I was a different person; he crossed the borders of the disease again and again. Some days things were one way and another day they were different. It felt normal; she felt trapped in a cloud. He was brimming with energy; exhaustion filled her. The disease was full of surprises: it was not a straight line. It was true that sometimes he needed all his energy to keep a close appointment. And those fluctuations made him question everything.

He explained that it was “the complex of being trapped in a fraud that Alzheimer's patients have. Good days and bad days and when you have a good streak you wonder if you are a fraud. Then, the disease appears to remind you.

I wasn't sure I could handle the pace of Las Vegas. Distorted music and crowds overwhelmed her. He passed the games of chance without spending a coin. He was also ignorant of the Penn & Teller, Shania Twain and the bunch of shows in town.

He let himself be absorbed by the walks, he took inventory among the neon signs. The Fremont Street Experience—a series of blocks filled with roaring casinos, stages on which people put on shows—was in front of her, the milling masses, and she was lost in their midst.

She passed a gangly man dressed as Yoda and stopped to take a picture of him. A couple of years earlier, her three children had Yoda tattooed on their shoulders in tribute to her teachings. I hoped you would appreciate the photo. He noticed Heart Attack Grill, monstrous in size and free food for anyone over 300 pounds.

In a brightly colored kiosk she bought some really crazy socks for her sister. He likes those things. A cheerful-looking woman came by to gauge her interest in a non-surgical treatment for puffy eyes. He wasn't interested in the slightest.

He went on. She went into the Mob Museum and bought a T-shirt for an upcoming grandson that read, "I've just been in it for nine months." The crowd was beginning to annoy her. His brain began to race. Was he going to see the morning presentation or the afternoon one? What was the name of the photographer you had met? Had a breakfast date?

Those kinds of questions kept running through his head. Her answers didn't come, her mind was full of holes.

By the next day's performance, the theater was nearly full. It was very different to see him in a packed auditorium with an attentive audience. There was a much more intense energy than during rehearsals. The work was agile in reconstructing the music teacher's life backwards, from the most intense moment of Alzheimer's to normality. And there was her husband, robed, shuffling, his mind lost in an unreachable world, yet another nursing home resident. Yes, her walk seemed natural. He had done well.

When it was over, Geri was excited. She had seen two essays but they had not impacted her in the same way. Organizing her thoughts, she realized that this was the first time she had felt moved by the work. It was like reaching that moment in life when possibilities end, when you have to face reality.

“For me it meant that everything that had happened to us and what we lived through had come to an end. It wasn't about going to a nursing home and losing your closest people or not having a good meal. It was the end of suffering. And it was heartbreaking."

What struck her most was not that the disease was pulling her towards that overwhelming moment, but seeing her husband pretending to be in that state. The sadness was unbearable.

After changing, Jim went to hug her. A group of actors, including Jim, stayed onstage to discuss her relationship with Alzheimer's. One of them, a social worker whose husband had the disease, spoke of how she referred to him as “my missing George”.

Because that was precisely what was happening: “he was disappearing”.

Jim said, “One of the things that worries us the most is the stigma and isolation felt by so many patients with the disease. Having it is considered shameful.”

He also talked about mime. In the play, for no special reason, a mime appeared. But he said that he had sparked a conversation between Geri and her son. He asked her: "Why is there a mime in the play?"

His response was: “The use of mime is brilliant. I am that mime. I feel like I see the world from a glass cage, that I can't find the words to express what I feel. More and more, I can't communicate with the world. That's me in a cage."

Morning came, warm and sunny. She woke up early. As she meandered through the city under the clouds, she tried to calm her mind after what had happened the night before. He was wondering about the woman he had given a dollar to the day before. She had passed a 90-year-old World War II veteran, a Vietnam veteran, and a one-armed man, but it seemed to her that this down-on-her-luck woman, with dry skin and shrunken fingers, had something genuine. Would I be out there again so soon?

That was the new Geri Taylor, with her penchant for speaking to the world. Since she was diagnosed with the disease, she was more friendly with strangers. The morning before, in the hotel lobby, he had started chatting with a woman sitting next to him and ended up talking about widowhood and wills while the woman's husband sat awkwardly next to him.

And yes, there was the woman, getting ready, her face covered in sweat. Geri gave her another dollar and listened to her story. She had worked for years as a kitchen supervisor in the Ohio education system, she had arthritis in her hands and feet, her marriage had failed, her boyfriend had lost his job at a low-paying cosmetics factory. On Sunday he had been there all day to get four and a half dollars and had not eaten.

Geri blinked a few times, letting the woman do the talking. She rang her cell phone: Jim wanted to know how everything was going. “Make sure you don't stand too long,” Geri told the woman. "Not good".

“I won't. Sure. You're very kind".

“You too,” Geri replied. "Was a pleassure to talk with you".

The woman replied, "I've made a new friend, God bless you."

That exchange made her happy. A small encounter that she could handle.

I wanted to see the Hoover Dam. Las Vegas was starting to feel like a drag: too toxic, it sucked your energy.

The trip lasted 45 minutes, so he left at noon. The weather was a bit cooler with a breeze. But the sun kept beating down hard, stubborn.

He walked leisurely around the dam amidst curious tourists. As the sun beat down, she admired the magnificence of the reservoir and the mountains that surrounded it. It collided with a row of palm trees that were in the wrong place. It was the perfect moment for a photo. I'll take it.

As he gazed at two seated statues, a broken voice through a loudspeaker said that touching the feet of giants brings good luck. She didn't think much of that idea. Would these statues know something about Alzheimer's? But, just in case, he ran a hand over one of them. "At least I did."

The excursion to the dam took all afternoon and had salutary consequences. He gave her something back: The next morning they left Las Vegas.

He really liked reading and also listening to authors. She went to a New York Public Library noon talk to hear Richard Ford. He had just finished his most recent novel, "Let Me Be Frank With You," about a sportswriter, Frank Bascombe, and his ideas about age.

The talk was good. Ford was nice and even took questions at the end. Geri raised her hand but it wasn't the one chosen. I was going to ask him for details about what it means to be one's “default” self, an idea he talks about in the novel.

Later, she was glad she hadn't been chosen. She forgot Ford's name and though she didn't need to say it to ask, she was worried that she might have asked the question wrong. He didn't need one more wound.

He stopped for a bite to eat near the library. After the waiter took the order, Geri told her companion about her nights, hallucinations and terrifying dreams. She used to scream in her sleep and her husband would wake her up. She dreamed of people talking to her. The night before a woman mispronounced his name. With a foreign accent.

She came to the conclusion that the voice belonged to her husband's first wife, who had ever called on the phone.

“I confuse my brother and my son and that is very annoying. Believe me. Sons, brothers, husbands and ex-husbands are not people you want to confuse. Husbands are starting to look a lot alike,” Geri said.

The food arrived. She said that “one of the worst things is when I don't respond to a conversation. It's like it's not there. I try to improve. I try to get involved with current events. In New York there is always something new. What was the gallery you opened? Have you been to that play yet? You have to be aware of what is happening. It is valuable to be up to date. But I can't play that. I can thank you for the information if you tell me something about what is happening.

Geri ran a hand through her hair. “When I go to see my friends, I prepare myself. I investigate. I make sure to ask about his latest granddaughter, something I forgot to do the other day. Or ask about the husband. But first I make sure there is a husband."

I was increasingly appreciative of Jim's help with the schedule. In her words, "I used to tell Jim to shut up and now I ask him what I'm going to do every day."

She picked at her salad and said, “I'm going half throttle. I can't open the closet and choose what I'm going to wear. I leave everything ready the night before or first thing in the morning so I know what I'm going to wear. I want to look good. I don't want to look old or crazy. I know I could look sloppy in a minute. I've lost interest in buying clothes, it's a burden… I used to like it. I had my own style that was projected as a lack of style. But now when I go into a store, there are too many things. I don't know one from the other."

Food also mattered less and less. She never liked doing the market, it was one of the annoying things in life. Now he liked it even less. “One of the important symptoms is the inability to cook. Now I settle for a sandwich at lunchtime. I buy roast chicken.”

Some nights she talked in her sleep. She woke up one morning to find herself in the living room looking out the window. In Connecticut, her room was on the second floor and they had a child gate on the stairs to keep her locked inside her own house.

Day of birds. I was in Central Park to take photos of birds. His face was shining. Her tutor, Sherry Felix, was with her. That's what he called her: tutor. With the equipment in tow, they walked between paths, the routes full of leaves. The park was still awakened by the noise of dogs walking in packs and a class of smiling children.

Her guardian had her own story. She had worked as a cartographer. After losing his job, he had tried to earn an income here and there by doing things like helping Geri edit photos. I was good at taking photos but had lapses when downloading them to the computer and editing them. Some days the whole process became crazy.

Photography had been a sideline for 30 years. She now she could spend time with him. The birds interested him very much. He turned his favorite photos into postcards and the best one, the one of a hummingbird, he frequently gave as a gift.

One of the things that overwhelmed him was finding the purpose of his life. Something to fill the space her career had left.

He never would have retired shortly after 60 if Alzheimer's hadn't started to bother him. He loved his work, the idea of ​​working. He never wanted to be left out.

The birds and their fluttering were wonderful, but was it enough? She didn't believe it but she hadn't decided what was enough either.

Photography, without a doubt, was an escape valve. When he was immersed in her, everything was different. In the photograph there was constancy and there was no flow of the disease. The world relaxed around him. Alzheimer's seemed absent, collapsing in on itself, unable to attack or mock her. With birds there was no need to search for the right word. He didn't have to speak to them, just observe their generous beauty.

As he liked to say, “For me, illness doesn't exist when I'm taking photos and editing them.”

He adored birds. Their names. She had known them so well once, and now most of them had faded from her memory. They stayed for a while in some remote place, waiting for something to happen. There weren't many birds but, well, sometimes it was like that.

“I didn't think thousands would show up,” Sherry said. "But this is pathetic."

Geri said, “I took one of my best photos here.”

“Maybe it will happen again,” Sherry replied.

Sherry looked around. "Alert, fox sparrow on the trail," she said.

“Is that what it is? It looks big,” Geri replied.

The bird posed among the trees, as if it had come to the spot just to entertain them. Click.

Geri looked down at her phone. She always did it, in case she had forgotten any of her homework. “I even use it to remember who I've talked to. I always look at it because I end up calling the same person twice or sending the same email”.

She chuckled softly at the way the disease always managed to gain the upper hand without her willingly giving up space.

“There are so many possibilities for failure… The pants I wore today, I don't recognize them, but they were in my closet. They are the correct size and they are surely mine. I must have bought them at some point.”

Mood swings are always part of this disease, but Geri's character had been stable. "At first, Jim told me, 'You can't stand dumb people.' I was susceptible, now I have learned to control it. I put on the adult costume and assume it. At least once a week something confuses me and makes me say: 'This is ridiculous, I'm going to write a letter. I have ideas about almost everything that can be done in the world. But I don't write the letters. I forget it".

They stopped for a while to have a drink. She admitted that she had lost her ego. He brought up the subject casually, as if it were kitchen utensils that got lost and then turned up. Something had been unleashed inside her. He had discovered indifference and it was fine with him. The more she felt it, the freer and more resourceful she felt.

“Alzheimer's arouses apathy. Years ago he had an ego, now I don't even know who I am. I have less ego. Frankly, I don't care what people think of me. I'm in survival mode, step by step. I don't want my coffee to spill."

The idea that Alzheimer's killed the ego was his theory. It was not proven. “I don't know why that is, but I've tried it on other people with Alzheimer's and they say the same thing. It's our little secret."

So Geri didn't care what people thought of her?

“I don't know if I've managed not to care at all. But I'm closer than I've ever been, than I thought I could be."

The Caringkind workshop started in a training room a little after 17:30. The chairs formed a circle around several tables pushed together. Eight people participated and Jim Taylor was one of them.

At first, she hadn't wanted to go to that group of caregivers to spend week after week digesting the details of the future, learning the things she would have to do. “There are people for whom knowing everything is synonymous with security. Not for me. Knowing more about the disease and what it entails will not be constructive, I know how it will be. Help him get dressed. Help him go to the bathroom. I know. Who does not?".

This, on the other hand, seemed worthwhile and somewhat manageable: two sessions to share information with other people, family members or people in the early phase of the disease.

Lauren Volkmer, dementia caregiver trainer, handed out the materials. She told the participants that they too would need support. "We all have a limit of endurance before we break." He mentioned that one of the books he used to recommend was called “The 36-Hour Day” by Nancy L. Mace and Peter V. Rabins, whose haunting title injected a bit of gravity into the room.

But he explained that for them that time had not yet come.

Lauren asked them to share something, anything. She brought up the subject of driving. One woman said she got nervous when her husband nearly ran a red light and stopped only because she yelled. Then he took the keys. He got mad. she relented. They were still mulling over the issue.

People shared their problems, their intimacy; everyone had their point of view and found comfort in shared experiences.

A woman caring for her husband was especially frustrated. "You're left alone in this, alone," she said in a shaky voice. "You have nothing left. You are always attentive. You repeated that twice, that three times… I don't like it”.

Another woman told her, "He probably won't like it either."

The first woman responded: “They said she could go straight, in one go. Is very annoying. I'm sorry. I am very angry".

There was no way to react to this illness. He attacked every single emotion.

Lauren transitioned to the organization's medical alert program. Wandering is common in the disease. It is something that happens when routines are modified, for example, that the subway does not stop at the usual stop or you enter the bathroom through one door and exit through another. The organization handles 350 disappearance cases a year. 99 percent show up. He recommends that everyone wear a bracelet regardless of the stage of the disease they are in.

Jim said he liked the idea but didn't know how to convince his wife. Then, he said, she had woken up from a bad dream, disoriented, and said that had made her think. Now I wanted one of those bracelets.

Then Lauren moved on to an exercise she wanted everyone to participate in. She began by saying: "This is not a test to see if they have Alzheimer's."

He gave everyone two sheets of paper. Each had a large star drawn with double lines. He asked them to draw a line between the lines tracing the outline of the figure. When they finished, he asked them how they felt after the experience. These were the answers.

“Me, nothing.”

“Calm down.”

“Boring.”

“Annoyance.”

Then he gave each of them a small mirror. With the second piece of paper, she asked them to put the mirror in a position that would allow them to see the reflected star. Afterwards, they had to trace the star again but only seeing it through the mirror.

Their intention, of course, was for them to experience something of what a person with dementia feels in order to generate empathy. (There are more exercises, like putting on glasses to simulate impaired visual function or putting on gloves with popcorn inside to replicate loss of sensory ability.)

As the exercise progressed, Jim said, “This is like driving a moving truck in reverse.”

The results were lousy, there were lines everywhere.

Lauren asked again how they felt.

“Tense.”

“Frustrated.”

“Incredulous.”

“Silly.”

“Disoriented.”

Lauren said, “It's almost ridiculous, isn't it?”

A woman responded, “Is this how people with Alzheimer's feel?”

“I ask you back,” Lauren replied. "What do you think?".

The woman was silent. She had understood. "Yes," he said in a soft voice, "I imagine that's how it must feel."

For a moment of reflection, Geri Taylor sat down and, as an exercise, wrote down the changes she was beginning to feel. The title: “Things that change from the decrease in capacities”.

The report, written with the precision of an inspection, served to explain to herself who she was. It was grounding, because she allowed him to realize how much he depended on others and how that had hurt her pride.

The document has two pages. The expected consequences appeared: not driving, not traveling alone (except by subway, bus or train), choosing simpler books, carefully planning any outdoor activity (“always carry the same bag, constantly review the things I have when I am outside. In nine months I have lost a vest, boots, a watch and my glasses, and that is not normal.”).

The list also included some optimistic ideas. For example: he wrote that he now enjoyed friends and family more than ever. “Call every day, write messages two or three times a day” and something totally unexpected: “Take housework more seriously and dedicate time to it”. The elements of housework were "an escape into the simpler things" and a "time to get away from people and rest." Dust or dirty clothes did not judge his limitations or his memory full of holes. Which is why his little victories over dirt and dirtier surfaces were gratifying, even intoxicating.

“I can't handle the schedule or the bills, but I can do this and I can do it well so I do it more and more. Help with my identity, it is a responsibility that I can assume. Plus, while you're at it, most of the time, you can sing along," she wrote.

She used to sing old hymns, TV songs. “Barbara Allen” was a favorite of hers; it was about a dying man fighting for the love of a woman. Macabre, but he liked the melody, he went with his second soprano voice. He cleaned with pleasure and sang.

Friday arrived and the day was slow. Her son Lloyd of hers came to visit her at her home in Connecticut, cozy and tree-lined, on Candlewood Lake. She wanted to clean out the cabinets and see what her son wanted to keep. It was part of his project to empty the shelves of his life while he still could. It was winter, late 2014, and it was cold in the house. The heating had broken down and the man who was going to repair it was on his way.

Lloyd is a good companion; he is friendly and a good talker, with a nice smile. When he was in high school he wanted to be a pilot but his asthma and a small heart condition prevented him. He was content to play with flight simulators. When she could, Geri would visit him and they would go for walks and catch up.

Sitting next to each other, they combed through objects filled with memorabilia: school yearbooks, newspaper clippings of old sports achievements, a cassette of Christmas songs from "Star Wars," a framed photograph of the Geri's grandfather and great-grandfather, and a tape of Jim and Lloyd singing “A Bushel and a Peck” from the musical “Guys and Dolls”.

Lloyd said, “You can keep this.”

“Thank you so much, it would be hard to say goodbye,” Geri replied.

Earrings. She knew exactly where they came from, a high school classmate she'd been engaged to. “They took him to the Vietnam War. He was gone for a year and a half, and when he returned I never heard from him again. So I married his best friend."

And, of course, there were a bunch of old photos of the talking dog. Not every family has a talking dog, but yours does. His uncle from Germany, Lloyd Bonsall, who inspired his son's name, had Mikey, a boxer who spoke a few words. The dog was something of a celebrity on German television.

“I never would have believed it until I saw the dog on the couch and heard it say ‘Mom,'” Geri said. “I was surprised. I still haven't fully recovered."

A talking dog. He laughed. It was reflected in his own words. She had always been very meticulous in what she said. But now that was impossible. “I had to tell myself that my best was enough,” she said. “I am in that phase. I hope you like the words I choose because they are the ones I can offer, and you know what? I've noticed that people don't listen as much either. So I manage to communicate."

After sorting out what to throw away, Geri started talking about “Still Alice,” a film starring Julianne Moore about a woman in the early stages of Alzheimer's. She wanted to see it alone because she didn't want anyone to project what they saw onto her. He liked it very much.

“When I left, I was at peace, I felt like I had gone to a foreign country and met someone from my village. She was so down to earth… how she searched for words. It's not sentimental. It is direct. I liked that the husband leaves at the end. A lot of people leave. It's what happens."

“Sounds like the kind of movie I'd rather miss,” Lloyd said.

“Well,” she replied. "She is very well done."

Geri had a fixed idea of ​​what she wanted, regardless of how her illness progressed. She knew that some people with Alzheimer's end her life. She does not. “I have a different philosophical position. I see myself as part of an organism, of my family. I don't just say turn off the light and that's it. If I can just sit and hum songs then that's still me."

At the table, they ate sandwiches and cookies for dessert. He had always liked cookies, but now, in his condition, sugar gave him energy.

“I've gone from an occasional cookie to one a day; sometimes two a day. I need fast energy,” Geri said.

It was getting cold outside and her son was taking his memories with him in the car. She smelled like rain.

He mentioned that Jim had just read in the newspaper about a clinical trial on phase I of the disease. They were testing a drug. It sounded like something new to her, a new project. The idea was that the product could slow mental decline by breaking down the plaques made of amyloid beta protein that are the hallmarks of Alzheimer's. The Biogen company was doing tests on subjects with moderate Alzheimer's cases. There was hope that it would be one of the most important advances against a disease that causes nothing but disappointment.

Geri immediately began searching the internet and learned that part of the experiment was being done at Yale-New Haven Hospital.

A few days later, he called Yale and found that if he had waited two more days he would not have classified. The mental state exam they did to measure her cognitive abilities diagnosed her with moderate Alzheimer's, just what they were looking for. A scan confirmed that amyloid plaques were beginning to form, the other requirement to participate in the experiment.

But the candidates they were looking for were those who had a variant of the gene known as ApoE4, which increases the risk of developing late-onset Alzheimer's. They did that test. A positive result would be your ticket of entry. The answer would come in a few weeks.

She felt some hope. There was a chance, however remote, that a drug would allow him to negotiate some sort of truce with the disease. He wanted to be part of the experiment.

One of the things the Taylors did was buy some shares in the Biogen company. Their financial adviser told them they were expensive, but they did it for emotional reasons: a vote of confidence, a gesture that might turn the tables and bring them a bit of luck.

In Search of Meaning The Sea Rise condominium in Jupiter, Florida had the perfect location: at the end of a curving street, just steps from the ocean. Unit D404 was a one bedroom. Next to the entrance, on the wall, a white board with reminders, telephone numbers and passwords for access to the Internet and the computer. As insurance for that memory with patches.

The Taylors rented it for January and February; they wanted to escape the cold. They drove there, saving themselves a plane ticket and car rental.

On a normal day in Florida, they wanted to go to the pool.

Geri said: “You come down, I need to decide what I'm going to take and I can't think if there are people, it confuses me and I take things that aren't there”.

Jim had already figured that out. Also that he was running out of energy and that he forgot the day they were on. His life continued with the discontinuity of the disease. Geri had received a mixed response from Yale. They had accepted her, which meant she had the ApoE4 gene. It was also a surprise to learn that he had two copies, which meant that he had inherited it from his father and mother. Both were dead and only he had developed the disease.

Having it from both of them meant her son would have it too. One of the genes multiplies the risk of having Alzheimer's by three. The other for 10 or 15.

“I reacted in two ways. I was worried that I didn't have the gene, what would I have then? Perhaps a brain tumor or some unknown variety of the disease,” he said.

“I wanted to be in the group of the known. I wanted to be part of the study. I was surprised to find out that I had it from my father and mother and that my son would also have it. It saddened me."

I didn't know if I would get the medicine or the placebo, but from the way the clinical trial was set up, I thought the chances of getting the treatment were high. In any case, she was entitled to receive the real drug for three and a half years after the trial, which would last one year.

They sat outside in front of the pool and watched a slender neighbor spin around. In two days they would attend a dinner to discuss life with Alzheimer's disease at a Unitarian church to which one of Jim's sisters belonged. At first they hesitated, anxious, about exposing themselves in public. But the audience was going to be receptive and welcoming and now they wanted to. If it worked out, maybe it was something they could do more often. They were mulling over ways that their illness could help other people.

Jim pulled out his tablet and scrolled through the screen, wrestling with the presentation. Each had a part. He was going to speak without a script. She, and her confused memory, couldn't memorize a single paragraph. She had read the script several times and each time it was new to her even though she had written it. He would have to read his part.

Jim was glad to be out in the sun and feel that soft breeze. Tireless, Geri headed out to sea. Some clouds came out and he began to walk along the shore, leaving his footprints in the sand as he passed. The waves broke, foamed, and receded.

He wasn't driving anymore. She no longer trusted herself. In fact, since the little accident he'd had in July, the first of his life, he'd only done it twice more. I was calm with the decision. I knew it was for the best.

Her nights, lately, had been haunted by nightmares and villains she couldn't quite place. She dreaded him at bedtime. I thought it was because of the Aricept he was taking before going to sleep. He talked to the doctor and he suggested that he take only half a pill at night and the other half in the morning. Did. It seemed to work. Last night the nightmares had subsided and she didn't wake up scared.

Some birds flying skimming the water caught his attention. She stopped to take photos. He got to his knees. "They seemed bored, if birds can be bored." He waved at someone passing by with his dog. He still liked to stop and talk to people, even about his illness. What bothered him were the usual reactions.

There were two types: "You're kidding, you don't look like someone who has something happen to them." And she then felt compelled to plead her case, like a lawyer before a jury who must show evidence to get the verdict. Stop saying I don't have it, I thought.

“Really? I too have been having some memory problems and was beginning to wonder. The other day I went to the kitchen and I couldn't remember why”.

Then it's about you. Let's talk about you.

Sometimes she felt like a guide telling people how to respond in conversation.

Another day he found a person with a dark complexion, wrinkled by the sun. It was someone who lived there. Geri casually mentioned the word Alzheimer's. The person asked about the symptoms and how he dealt with them in a polite manner.

Good, he thought, finally. That was how it was done.

The day of the presentation dawned sunny. They went to a couple of places for tourists, a turtle hospital. The Loggerhead Marinelife Center is a seaside conservation and research center that rehabilitates sea turtles. Each turtle is assigned to a pool. The couple leaned in to look.

The stories were sad. Mayflower had lost part of her left front fin to frostbite. Reef was struck by a propeller and was paralyzed. C.C. had a fishing hook stuck in his esophagus. They walked around the pools and waited for the day when they would be returned to the sea.

The guides had a lot of information about the turtles. Geri had been there before but everything seemed new to her mind, confused by Alzheimer's. Yes, everything ended up leading to Alzheimer's.

Then they drove to the Grassy Waters Reservation, one of their favorites. The silence and calm soothed her. After a little nap, it was time to head to the church.

There were three dozen casually dressed people crammed into the meeting room of the Universalist congregation in Palm Beaches. They had set up tables and trays of pasta.

With full stomachs, the voices fell silent and the couple told their story.

Geri sat in a high chair. If she was standing for a long time, she trembled. “We are happy to be here to share our experience. It's tough at times but it's also been an interesting time,” Jim said.

They talked about how the disease had affected them, how they had managed to avoid the paralysis that many sufferers were subjected to, and how they had chosen their own path. The details made people laugh. For example, that Geri kept getting the wrong toothbrush and threw Jim's toothbrush away because she couldn't remember whose it was even though, in her own words, “there are only two of us in the house”.

Geri gave advice on how to communicate with someone who has the disease: focus on one topic, don't ask multiple questions at once. When a friend asked her many questions at once, she confused her and could only answer: “Choose just one.”

Geri continued: “Get next to him, smile, grab his arm and say: 'Hi', 'I know', 'I'm glad you came', 'I'm your friend.' Those are very important phrases for an Alzheimer's patient and they really help.

They had decided that during the talk, Jim would ask Geri questions.

Jim: “Geri, how do you live without falling into sadness?”

Geri: “We all face fate, some of us know what the cause is going to be, others still have the full range of options. I spend the days receiving gifts. A note from my niece, a hug from my granddaughter, a call from my son telling me about the weather, a photo, a call from a friend, my husband's smile when he says goodnight to me”.

He looked around the audience to catch eyes, and left his finger where he was on the page. Then he continued: “The pain does not go away but I adjust it every day, accommodate it and adapt it as I feel necessary. It is not about denying things, it is rather allowing certain functions of life to stay in the front while there is a program that manages the back, the brain, to find a way to adapt to the changes that Alzheimer's prevails in life."

The engrossed audience listened as an elderly couple recounted how illness brought them together and separated them. They accepted questions. There were raised hands.

A man wanted to know if he did crossword puzzles. Geri said no, they were very frustrating.

Laura Noel, Geri's niece, raised her hand. Two years ago, before Geri began telling those close to her that she was sick, Laura was snooping through her phone and saw that on the back she had written the word "husband" next to Jim's name, and next to Lloyd's. the word "son". Laura joked: "Are you going to forget who your husband is?" Geri looked at her but didn't respond. It took him a year to tell him.

When the couple arrived in Florida, Laura realized her aunt had the wrong cup. She drank coffee and he drank tea. He didn't like the taste that the coffee left in the cup. Laura, an artist, painted on the cup: “Geri. Coffee. Milk. Sugar".

During the talk, Laura asked about the response she liked to hear when telling someone she had the disease.

“‘I love you and I will do whatever I can.' The most important thing is acceptance,” Geri replied.

When they finished, there were long applause.

There wasn't much traffic. It took them two hours to drive from his Manhattan apartment to New Haven. There was so much light that they looked sideways. They were waking up in silence.

The first week of March, she had taken her first dose of Biogen's drug, which was called Aducanumab. At the moment, no side effects. Now it was April Fool's Day and he was returning to the Yale hospital for the second session, his new ritual.

Just like last time, no excuses, she had to take the cognitive ability test. Word lists to remember. Simple images and repetition of what he had seen. In each sequence he managed to recover two or three of the memory holes and then blamed himself for the bad results.

“Every time I see the list I want to cry,” Geri said.

Last time he had done well with the names of birds and hats. “I've been trying to cheat the test. I hope there will be a lot of hats and birds. Maybe that's right. I remember the hats, but what they do is change their position to confuse you. They also give you the same words three or four times to see if you've improved. And then you get depressed," he confessed.

Cars went by, traffic. He looked at the scene, nondescript. Sigh. “I was good at math and now when I go out to dinner I have to give the bill to the person with me to calculate the tip before I sign it. The last time I put everything in the bag while the waitress asked me for the paper. I had to turn my wallet around to find it," he added.

She looked at her husband and with a smile said, "By the way, I bought a lot of toothpaste and deodorant so you don't complain, I keep losing them."

“Right on time,” Jim replied.

They were in good spirits. A few weeks earlier, Biogen had announced at a neurology conference that an analysis of data from 166 patients offered positive results from the early stage of the trial.

The analysis found that the drug slowed cognitive decline and significantly reduced the plaque that formed in the brain. Experts said the data was positive. Other treatments had already offered promise that later turned out to be red herrings. (In fact, later results were much more diffuse.)

In the announcement they also reported that the ApoE4 variant was more likely to cause brain swelling if concentrated in high doses. And that was the case with Geri.

At the office, good news: there would be no cognitive ability test, just a small physical exam. The doctor noticed a slight tremor in Geri's hands. That's old, she told him. "I've never had anxiety, a bad movie bothers me, but that's all."

At the hospital, he slid onto a bed under harsh fluorescent light bulbs. Lying down, she was injected into her left arm and thus the transfusion began.

Dr. Christopher H. van Dyck sat down with Geri and Jim. He was a geriatric psychiatrist who had founded the Alzheimer's research unit at Yale Medical School in 1991, when this area of ​​science was just beginning. He was still running it and he was still trying to get to the bottom of the disease. He wasn't just intellectually curious; It was also personal: Both of her grandparents had Alzheimer's.

He had witnessed firsthand a whole series of failed drugs. There were only four drugs approved for the symptoms of the disease and the last one was from 2003. "It has been a time of few achievements," he confessed to them, but there he was, his eyes chasing a hope that came out of a bag and entered through the Geri's arm.

They asked him how to pronounce the name of the substance. He wasn't sure. “Pharmaceuticals like names that are hard to pronounce so people learn the brand name. That's what I've heard,” he told them.

“Did it have anything to do with the failed experiments?” Jim asked.

“Yes, with all of them,” he replied with a sour smile.

“It must be exciting to be associated with a success, right?”

“With demonstrable success. It's still early for that," replied the doctor.

For now the drug, like all others going through the testing stage, raised more questions than answers. It would take years to know its real value. He was right to be cautious.

“How are you feeling?” the doctor asked Geri.

“Okay.”

“No tingling?”

“Nope. I know it sounds strange." She was allergic to fire ants and worried that some medicine was derived from them.

I was hopeful that the treatment would work. Inside I was optimistic, I wanted to find a way out.

She told the doctor, "I told Jim they could freeze me in this state, I'd be fine like that."

Sure, who wouldn't take a deal like that? It was much better than reaching the fullest point of the disease. Living with “it”, looking for words, getting things in the wrong place, not being able to drive, always living in the present. Why not?

She knew that nothing could return her to her previous state, to the old version of herself, and being frozen in the moment she was in was much better than facing the unpleasant reality that awaited her in the final phase of the disease. .

The doctor told him: “With this medicine, you may be able to go back.”

“Okay, so I don't have to take care of you,” Jim told her.

The doctor asked him about his habits. He acknowledged that he loved to read but limited himself to strictly linear books.

“I'm reading 'Crime and Punishment.' A delight, the same guy hanging around all the time,” Geri told them.

Dr. Van Dyck looked at Jim. Did you attend any support groups? Since he too was caught up in the disease.

“I've avoided them. I think a lot of people carry it like a burden, Geri and I have decided to live the best we can for as long as we can," Jim replied.

Geri told her about the therapist who advised her to keep quiet about her condition.

“Yes, there is a stigma. People keep it a secret and all the money goes to cancer and heart problems," said the doctor. "The amount earmarked for Alzheimer's disease is minuscule, even if it comes at a greater cost to society."

Spring came in April. Jim's daughter Heidi came with her daughters Maggie and Leila to visit them in New York. Every year he did. The five of them squeezed into the one-bedroom, one-bathroom apartment. Geri had just told her granddaughters what was going on. He had done it at Christmas.

The girls were not blind. They had noticed one or another mistake by their grandmother. Geri was very close to 15-year-old Maggie. Leila was 13. They had cooked together since she was four years old. Maggie understood something of what was going on. I had done a project on Alzheimer's at school. "It was great".

During the Christmas visit, something disturbing had happened. Geri walked into the room where the two girls were and stared at Maggie. He thought it was his sister. Maggie noticed immediately.

“You didn't recognize me, did you?” he asked.

“No,” Geri replied. "I got confused".

They walked through a park, but the air was still cold. It didn't feel like spring. The two girls were ahead, dodging strollers and people drinking sodas. It started to drizzle.

They went into a small restaurant to get something to eat. The conversation ended up being about Geri's claustrophobia. It became so acute that she was not able to get on the subway.

“It sounds weird, but I think the disease has distracted me from some things. Now I have more emotional distance, ”he told her.

The family laughed at the tale of a little adventure. The other day, they had arrived at the apartment and Geri couldn't find her phone. Maybe he had thrown it away.

They went to the basement, called the phone, looked over the bags. Nothing. But he felt that it had been good to have gone there, because surely he would return to look for the things that he accidentally threw away. In the end, it turned out that the phone was in the apartment behind a table.

After eating they went shopping. The two girls looked at clothes while Geri and Heidi talked about how the little girls didn't understand their grandmother's future.

That had her worried. They had recently seen the movie "The Notebook", which at the end shows a woman in the final stages of dementia. “Geri isn't going to end like this,” Maggie said. She believed that the medication could stop it.

Her mother replied, “We'll see.” Relatives began to arrive on time, breaking family tradition. Mother's Day was the day when many relatives came to the Connecticut house, and Geri made a big meal.

This year was different. Her son Lloyd and her girlfriend had asked many times for him to let her help and she always refused. But he had already started making mistakes in the kitchen. A couple of years ago he had forgotten several dishes.

Sickness has no vacation.

Finally, this time she had told them that even though she would cook, she would let them help her.

His brother and his wife came from California, visiting their children and other relatives who lived nearby. His sister had also come. There were like 20 nieces.

On the fridge door, a list of chores for Lloyd and his girlfriend. Geri could no longer prepare even the most rudimentary dish without following instructions. “I read and go over the cooking instructions over and over again. I have to think every step. I have lost the automatic; Now I drive with gears”, he admitted.

They each helped themselves to their plate and sat down, under a dim light. The sound of the forks hitting the plates stood out, the voices, soft. Geri took some of them for a walk around the estate, to the lake.

She was enjoying herself but feeling fatigued. Even on the most normal days, her energy ran out at noon. The battery no longer lasted. He liked to take a nap or sit quietly reading a magazine or camping in front of the television. I watched a lot of movies.

Sometimes she would take an entire morning to disappear into herself. "I just look. I think I should be doing something and then I'm like, 'What for' and just sit there," Geri said.

He was having trouble with his eyesight. She was looking for the eyeliner in the cosmetic bag, and although she had it in front of him, she did not recognize it. “I would reach for a fork, see it, look away and it wasn't there either and look again and it was there. That happens once a day," he explained.

Another concern for the list.

Part of the kitchen help was so Geri could spend more time with her guests. Some she saw very little. He talked with them but the disease appeared from time to time. “I forget the names. Those of my own family. The city where my sister has lived for 40 years. I forget. Conversations are like the blink of an eye. Sometimes it's better not to have them," he reflected.

Group conversations were especially frustrating. “They talk about the stock market and I am thinking about what to say. When I finally find it, they've already moved on to politics and when I tune in and have something to say, they're discussing the weather. It's like casting a hook over and over again. I just exhausted. My strategy is to speak first, bring up the subject myself before someone else changes it."

And the fact is that the constant dance that the disease teaches you is tremendous.

First it was titles: listen to a letter and name the song. Maria Mursch, who organized the group, read one: "Where the antelope and the deer play." And he said they could sing or hum if it helped them guess it.

Someone did and several joined. In chorus, they said: “Home on the range”.

Next: "If they don't win, it's a shame."

“Take me to the game.”

They darted from one to the next, throwing whatever came into their heads, working as a team, spinning clues until they cornered the answer.

Someone said, “I love this game.” Another responded: "Every memory is worth a victory" and recalled an anecdote related to one of the songs.

Another asked: “How come you don't have any Led Zeppelin lyrics?”

“I have to look for her,” said Maria.

Trying to respond to one of the clues, a man sang a whole song only to be told, “It's not that one but thank you, that's beautiful.”

Maria released more and more tracks. She could hear the brains rattling, her eyebrows moving as she searched her memories for the answers. Sometimes they went blank; but most got it right.

Geri guessed “Shine on Harvest Moon” and the whole group started singing along until someone said, “That's enough.”

The memory workshop on Thursdays at Caringkind was from 11:00 a.m. to 5:00 p.m. m. to 12:30 p.m. m. Eight people attended, six men and two women. Geri had been participating for over a year and made him happy, letting himself be carried away by the mind games. Time was flying by.

Geri found it increasingly difficult to produce sentences. But there, she surrounded by "her people of hers" she was not so aware of. Outside of that room, when he got frustrated at not being able to say sentences in a row, he would withdraw. "Twice in the last few months I've gotten to such a frustration level that I lost control and yelled at Jim just because he was there."

Without further preparations, Maria went from game to game. Words that begin with the letter X. Phrases whose first letter ends in A and the second letter begins with B. Guessing games: a city in Peru with the same name as a fruit. Name of the device that answers questions at a party. Modes of transportation beginning with B. Jobs beginning with T. Answer.

As expected, they frequently repeated themselves: “Do we have a builder?”.

They had it.

“Banker?”.

“Yes.”

“Banker?”.

Maria never lost her cool. She handled them with enthusiasm. That's how things were done there. Everyone cheered for successes and cracked jokes in a place ruled by Alzheimer's.

Anything was talked about. One of the participants was in a 12-step program and was explaining that what they were doing had certain parallels. The denial, the stigma, the need to admit what you had in order to move on. “The thing is that you are not alone and that is very important,” he said.

“I love the humor of the group,” said another. "And the songs."

“Well, I wouldn't say that much either,” said another.

Everything has a limit. And the Alzheimer's clock was ticking. Workshop participants had, on average, a year and a half to two years before they moved to the phase where they would not be able to participate in the games. Some maybe a little more.

Geri was in that stocking and was one of the liveliest. In the eyes of others she didn't seem so different from what she had been a year or two before. But it was. The external changes may not have been obvious, but inside everything was becoming more and more difficult for him. It was like a factory suffering from a continuous decline in productivity.

Participants in workshops do not usually leave voluntarily. They ask them to do it. For example, last month it had happened to one, the touch on the shoulder. Against all odds, he had participated for four years. But in the end he was kind of absent and confused by the exercises, so they recommended another organization that could help him more.

The group discussed his absence. They were interested in knowing that there was another place, that it was not left out. At some point, it would happen to everyone: everyone would get that touch on the shoulder.

She thought so too. She had discussed it with her best friend from her workshop, a 73-year-old retired software engineer who had attended for four years. All of his initial colleagues had already entered a phase of further deterioration and left.

They got along well. He thought she was "the perfect being." He admired that she was always alert, that setbacks couldn't beat her.

From the point of view of both there was something that unbalanced the group, that unbalanced everything. The emphasis was placed on the person in charge of care and not on the people with the disease. They were passive subjects.

They knew they still had an independent life left, that they weren't useless. But with difficulties. She felt that the promise held by treatments like the one in her experiment could slow the progression of the disease. Sometimes he also thought that his heart or cancer could get through and win against Alzheimer's.

Geri and her husband had given extensive talks about life with Alzheimer's at a Jewish community center in New York and in Connecticut. They already knew. They had become apostles of learning about life with illness. But she felt that she still had to do more.

She and her friend set out to identify helpful strategies for daily living and share them. They were the sick, they were the authority. His friend told him: "We can help, we don't have to sit there waiting for things to be done for us."

She introduced it like this: “Most books on Alzheimer's are about the caregiver, I've been a caregiver my whole life. I am not interested in how someone has become a hero who, later, when the person is no longer there, can rebuild his life ”.

In August, she had met with members of the CaringKind team. Geri gave her ideas. One of them said: “Would you like to have a support group?”

"No." That was the last thing Geri wanted. She wanted to share strategies, a basic tutorial made by peers, by patients. "We don't want them to do it to us, we want to do it ourselves," he replied.

He felt skepticism. He told them that they were reinforcing a situation of dependency that infantilizes the patient. They realized that Geri was serious.

Three weeks later, in September, Caringkind designed a seminar to identify strategies for people suffering from early stage memory loss. From patients for patients.

The organization team understood that they were filling a void with this meeting, but they only expected half a dozen participants. 22 people came. They divided them into two groups and in the third session, they were all together.

A facilitator helped run the sessions. They identified strategies and wrote them on a board. The image returned by the meeting was double. For one thing, most people didn't have a strategy, they didn't think like that. “They weren't talking about strategies so much as they were verbalizing their problems,” Geri said. “There was a lot of frustration building up from forgetting the eggs and milk.” On the other hand, there was a lot of interest in clinical trials.

Many of the group's ideas were Geri's. How to harness the utility of a smartphone, how to get an electronic pill dispenser (Geri had gotten one online). The idea of ​​socializing as much as possible, finding ways to remember things, getting physical exercise, and something that was very important to her: finding her purpose in life.

In the last session they discussed what they really wanted.

Many of the expectations were unrealistic. They talked about how "they" had to do this or that, how "they" had to offer affordable housing, an alternative to nursing homes. But Geri just kept thinking, “Who are they?”

Someone said there should be billboards about them and their problems. That the country had to know. Another said that there should be commercials on TV. In the end, Geri said that perhaps they should publish playbooks. At least that seemed feasible.

The members of the organization said they would. Geri was happy. The message had gotten out. Those strategies could mark a compass, a rhythm to advance.

She and her friend decided to keep pushing the organization. It was just a first step. She knew that it wasn't just 22 people who needed help. There were many more.

The things that happen in the supermarket. Jim went grocery shopping. At a table outside, Carolyn de Rocco was raising awareness about Alzheimer's. She was a program and education supervisor for the Connecticut chapter of the Alzheimer's Association. They were chatting until he went home and returned with Geri.

A few months later they arrived at the organization's offices in Southington.

Eleonora Tornatore-Mikesh, the director, was not there, but she called and they talked. The couple spoke of supporting strategies, of lifting the veil. The director told them about a recent annual awareness program: “Champions”. It had groups for patients called “Getting Purpose for Alzheimer's Patients (GAP).

They only had 65 participants but the association wanted to help them grow.

Geri said she was surprised at how many people remained hidden.

Yes, the director replied. The association offers to take presentations to different companies but the managers say: “Well, we believe that nobody is sick”. Then 80 or 90 people appeared in the talk. The stigma. The negation. Hideout.

Geri spoke, lost herself. "Sorry, I lose the thread." It started again. "If it stays hidden, people don't develop the strategies they need to make up the deficits and slowly slip into a state of incapacity."

That was true, Carolyn said, recalling a woman who, because she couldn't remember where the dishes were kept, had put glass doors on the cabinets. Or the husband who worried that her wife might get lost going to the market and was afraid he wouldn't remember what she was wearing so she decided they would wear the same color shirts.

Not long ago, Geri had discovered a page on the internet: “To Whom I May Concern”. She was managed by Maureen Matthews, a psychiatric nurse, so that patients with the first symptoms of dementia act in works to show how they feel. Geri watched some videos and immediately felt that she understood.

One person says, “People take a diagnosis as an official statement that you don't count anymore” or “It's not that we want people to treat us like Alzheimer's but we do want them to acknowledge that we have it. It's confusing, right? Welcome to our world” or “Let's get to the end. But not today".

Eleonora said that the patients wanted to have a voice in the organization, so they had been asked if they wanted to sing a song about Alzheimer's. The answer was obvious, immediate. They got a singer, Beth Styles, and in a coincidence of a lifetime, Maureen to give the group ideas. It couldn't be too light-hearted, the disease is monstrous, and they didn't want to minimize the miserable parts. But they insisted that there was something of beauty in those who suffered from it. That there was life They had to show that.

“I am a good grandmother and a good mother,” said the organization's director, “but we want the public to hear a true story, I have Alzheimer's and I think the song can help.”

Beth Styles wrote it. I hadn't finished it but it was almost ready. The members of the support group would do the background vocals. Maybe the radio stations would play it and people would understand a little more.

Geri heard it all over a speaker saying what she wanted to hear and asking her for help. Let her speak. Become one of the “champions”, become, perhaps, a representative of the organization for the whole country.

Geri began to cry. That was what he wanted, for Alzheimer's patients to live with dignity, without shame, to find ways to move on. And this woman was telling her something that she wanted to hear. Geri had never cried for herself. She had never felt sorry for herself. But this made her cry.

“Maybe listening to you will stop me pacing around the kitchen so much,” he said.

“We haven't had our moment yet, but we will,” Eleonore replied.

Would you like to hear the song?

Carolyn brought her computer and turned it on. It's called “Life is beautiful”.

I woke up one morning, I opened my eyes, it wasn't the same anymore The things that before seemed so natural to me now I don't remember their names... The song was magnificent. The story it told too. wrapped her up

Look into my eyes you will discover memories of a golden summer sky Even if I don't remember things that were Life is wonderful when you remember me.

Geri had walked over to the computer and was listening quietly. Without looking, she grabbed her husband's hand.

They compared the tremors. They put their hands straight. They examined them.

“Look, I shake like you do,” said one.

“No, look at this.”

They laughed. It was a way to start lunch.

Outside the room, participants in memory workshops kept in touch with her. When she was away, she was missed. I sent them messages. called. Once a month they tried to go out for lunch.

It was a cool, windless fall day. They met in a casual restaurant and chose a table in the back. His friend, the software engineer, a social worker, and a music teacher. Some still lived in a certain secrecy, deciding very carefully who should know what was happening to them.

Geri ordered waffles and cream.

They talked about this and that, about a new member of the group whose name wasn't Bill but something similar. How to carry martinis without spilling them because, as Geri said, "those glasses are so heavy."

Someone said, “You know, we get along really well.”

Geri replied: “Because from the very beginning we know something very important about each other.”

Another added: “It makes you drop your guard.”

Geri said, "It's like when you know the worst of me, or the second worst, you're already in."

He picked at the waffles. She was now eating smaller snacks. “I have less and less appetite and I am more capricious. Things don't taste so good anymore. Everything tastes the same," he admitted.

The clinical trial was advancing, phase three had already begun. She was going to receive the royal medicine without any doubt. He couldn't tell if it had helped, he knew that the head was always in a state of emergency and the world became somewhat blurry. She was asking her husband what day it was. I asked him again shortly after. With Alzheimer's you always lose. But perhaps without the essay it would be worse.

“Lately, I spend my time looking for things I just put away: some shoes, a plate… I put something away, turn around and start again from scratch without finding what I had put away because it is put away. It happens to me twice a day, ”she admitted.

She found herself leaving more sentences unfinished. Alzheimer's can kill language completely. It happened to a woman who had been in the shop. She had gone mute, she only made sounds. Geri was afraid that her own thoughts would be imprisoned forever at some point.

He had an idea: learn sign language. “Children learn to point before they learn to talk,” she said. She told her husband and her son. That if the three of them learned, the day that happened, if it happened, they would be able to communicate. Shortly after, her son sent her a video saying, "Good morning, Mom." I had learned thanks to YouTube.

Another said: "I'm not so concerned with finding the words as I am with keeping the image of what I did the day before."

And another added: “The first thing I forgot was the restaurants. ‘Do you remember where we ate two days ago?’ No.”

One woman mentioned getting a free quilt for participating in a clinical trial of an inhaler. It was something to do with Alzheimer's. The sick often suffer from shaky hands and people made quilts to keep their hands busy. Embroidered bedspreads.

They talked about how they were doing with money.

“I went to the store and asked for bread and milk,” Geri said. "She told me how much she was, she was confused, I gave her a $20 bill and hoped I was right."

Another of the women: "What scares me is that I wrote a check and when I read it, it's not that it was messed up, it's that I didn't have the necessary information."

A man: “I'm still watching my account, but if I withdraw more than a certain amount, my son gets a notification. What is this $30,000 check for?”

The woman: “Another vehicle?”

Geri: “Great, you have someone to take care of you.”

And so it had been over three years since Geri hadn't recognized herself in the mirror for the first time.

When he retired, he wondered what he would do with his free time. She had made notes about her thoughts and thought that one day she would put them next to the pictures of the birds. But when she reviewed the pages, she didn't love them.

Now, with the strategy sessions and what he was doing in Connecticut, he had found his answer. He was very clear. This was the perfect second act: something to do with his experience in healthcare, helping other people navigate the darkness of Alzheimer's and trying to redraw the disease.

With that goal, I felt I had found a balance. That Alzheimer's had become his goal. "If you are a carpenter, you want to continue building furniture."

That's what I could do. Continue building furniture.

Life had become a procession of small pleasures. Things were less diffuse, every corner of her life was special. And with his people, besides, everything was real.

They finished dinner chatting. Nobody was in a hurry.

Someone started talking about a TV show about a man who takes a pill and for twelve hours becomes the smartest person in the world. He uses it to solve crimes.

Another said, “Wouldn't that be perfect for us?”

One of the women said: “Although it is pure fantasy”.

“Imagine that,” Geri said, “we'd be the smartest.