Text size:

Losing their memories, finding their way

MICHELLE CHEN

More people living with Alzheimer's and other forms of memory loss are beginning to see their conditions as something to grow with rather than surrender to. Some are learning new ways to organize, empower themselves and remain vital members of their communities.

Newsday spoke with three people diagnosed with memory loss, two of them living on Long Island, about how their lives and families have been impacted. They face the common challenge of holding onto who they were, and at the same time finding new ways to lead active lives within their evolving limitations.

Ed Garzero, 81, a former scenic painter who lives in Center Moriches, has found a base of support in a group run by the Long Island Alzheimer's Foundation. While his memory often drifts, the group grounds him. The patients lean on each other to deal with everyday challenges, from staying informed about new treatments to welcoming new members who are in earlier stages of the illness.

In group discussions, Garzero said, common ground surfaces among people he would probably never have befriended in another setting. "The sharing of the experience is a very intimate and communicative feeling," he said. "People who wouldn't necessarily have much in common have great feelings toward one another."

"Mary," a 65 year-old Manhasset resident who also attends the support group, has felt herself increasingly isolated in some ways by the dulling of her memory. A former college professor and psychoanalyst, she finds it much harder to teach or write formally. Her family, she said, continues to struggle at times with the erosion of her memory. She has also lost some friends who she believes are uncomfortable with the changes she's undergone.

"Sometimes people really can't tolerate other people's situation," she said. "And it's not their fault. It's just kind of who they are."

Connecting with fellow patients has helped blunt the frustration by providing a new social network, where people "can trust each other, and you each know what the other is experiencing."

Recently, Mary spoke publicly at an Alzheimer's Association forum to raise awareness about memory disorders.

In the past, she said, "I think people have really been not very interested in Alzheimer's patients," and they often suffered from social stigma, but this is changing as more people are affected by the disorder.

Mary said she would like to see Alzheimer's patients be more active in their outreach to educate others about their condition. "But it's also those limitations that hold us back," she said, since building a movement requires organizing, speaking and writing abilities that many patients may lose over time.

Her everyday life, however, provides opportunities for one-on-one advocacy. Though few people in her community outside her family know she has Alzheimer's (she asked that her name be changed for this article), when she needs to, she explains herself.

"I try to let people know what it's like," she said. "I just say, 'You have to go slower for me because I don't always hear you; you go so fast that I can't keep track of exactly what it is you're saying.' " Still, she said, sometimes she feels she won't be understood, so she might explain a lapse by saying she's just "having a bad day."

Mary advises others who are dealing with memory loss to "look for what you can that would help you... people that respect you and love you. And also to try new things, even if you think you can't do them. And to connect with as many other people like you as possible."

Click here to hear Mary describe her experience with memory loss.

In Cleveland, Diane Phillips-Leatherberry, 67, is dealing with memory loss by extending a lifetime of social advocacy, which previously included activism in the Civil Rights Movement and campaigning for local crime prevention. Her condition, which is related not to Alzheimer's but a type of frontal lobe disorder, has led her toward a new kind of social-change work at the Intergenerational School, a special public school that pairs children with older adult tutors, many suffering from cognitive challenges.

As a mentor, she helps children with their reading while gaining intellectual stimulation and forming a trusting bond. Working with the students, many of whom come from Cleveland's black urban poor, is a source of pride for her as a longtime social justice activist.

In the past, her memory limitations eroded her self-confidence, she said, but since she's become involved with the school, "I don't get so down on the world."

"Because I'm having to exercise so much patience with the kids," she said, "I'm also exercising a lot of patience [with] myself."

And while her memory is slipping faster than she'd like, she's taking her time.

Driven by a belief that "repairing the world is our responsibility," she sees her work now as fulfilling that mission--for as long as she's capable of doing it. "I'm sure that if and when I have to stop this," she said, "I will feel that I've accomplished something."

We invite readers to discuss memory disorders and how people with dementia can contribute to their communities in our online forum "Living with memory loss." Facilitating the discussion will be Alana Rosenstein, director of early-stage programs at the Long Island Alzheimer's Foundation, and the author of this Sunday's op-ed, Jesse F. Ballenger, an historian of medicine and author of "Self, Senility and Alzheimer's Disease in Modern America: A History."

Read more about the growing community of people affected by memory loss:

Alzheimer's Association

Long Island Alzheimer's Foundation

The Intergenerational School

Charles Jackson: a personal narrative on Alzheimer's from the StoryCorps project