Aging Care LLC

Reprinted from: http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?_r=0

FRAYING AT THE EDGES Part 5
By N. R. KLEINFIELD

THE CARINGKIND ORGANIZATION is housed in one of those muscular office towers that jut up on Lexington Avenue in Midtown Manhattan. It is where people faced with Alzheimer’s can go for help. About 15,000 or so a year seek something from it.

They make up a sliver of the roughly 250,000 people living in New York City who the group thinks have Alzheimer’s (factor in caregivers and close relatives and the number touched by the disease soars). Many of them throw up their hands, think there is nothing to do. Many deny. Their families deny. They wait too long to find out why their brains aren’t working correctly.

Lou-Ellen Barkan, the chief executive of the group (at the time, it was a chapter of the Alzheimer’s Association but later separated), saw this with her own father. He had some odd symptoms, but he was also odd. What prompted the family to get him to a doctor was when they thumbed through his checkbook, often a giveaway. He hadn’t balanced it in months. He had written checks to charities he had never supported, for instance the Mouth and Foot Painting Artists.

When she mulled over whether the organization had something for her, Geri Taylor was reluctant to visit. She pictured the place as a resource for those sunk much deeper into the disease’s darkening world, that it was too early for her.

Still, one sun-smacked day in March 2014, she went to have a look. Once she mingled a bit, she knew she had been dead wrong. She was not early. She was right on time. In a city of so many, she knew these people; they were alike, all walking in the shadow of Alzheimer’s. “I thought these were my people,” she said. “This is where I belong.”

So she dived in and enrolled in some programs. Discover New York. A photography workshop. And she signed on for one of the continuing Memory Works groups that engaged in mind exercises for those in the early stage of Alzheimer’s. At first, Ms. Taylor was skeptical. She knew all about the memory games that some experts promote to resharpen balky minds, yet the research she had read frowned on their effectiveness. Her own feeling was that they were annoying and pointless.

Yet she gave Memory Works a shot. Surprisingly, she liked it, liked the companionable people, liked the exercises. She became known as the perky one. The moderator was upfront that the games would not cure them or forestall their decline. They were there to have fun. One of them was a marvelous whistler who entertained them while they waited to begin. So every Thursday at 11 a.m. she came, sat among the eight and participated in the swell of games for the hour and a half.

Name words starting with the letter B.

Name foods starting with the letter M.

The best part was not having to mask her shortcomings, audition for acceptance. In the outside world that was increasingly foreign and fearsome, the pages seemed to turn too fast, and it was a constant struggle to keep up. “People say: ‘What do you mean? There’s nothing wrong with you,’” she would explain. “But I’m always hiding things.”

Outside, people with Alzheimer’s were looked on as broken. In the groups inside these walls, though, everyone had it. Alzheimer’s was normal. In Memory Works, she felt protected. Unhampered. One of the others called it a “safe place,” and that felt right to her. “There is nothing like being different with your own people,” is how she would put it.

More than anything, people with leaky memories came to this sanctuary to find affirmation that they were still a presence in the world, that they were still valid. Ms. Taylor found renewed meaning by being among others like herself.

As Thursdays swept by, the sessions became amazing. Not the games and whether they did any tangible good. But the chumminess and the vibe among these strangers all hijacked by a ghastly disease — the retired software developer and the former lawyer and the bridge writer. They egged one another on. Joked around. It seemed inconceivable, but Ms. Taylor had never belonged to a group that was so much fun.

“It’s like a party,” she would tell others. “Everyone’s laughing. And everyone is happy they are with people just like them who can’t get the words out and can’t find the bus pass.”

Sitting there in the bubbly ambience, she would sometimes think, We shouldn’t be this happy.

It was as if they were all high. High on Alzheimer’s.