Ray and Ardena Plourde weren’t sure what to expect during their first session of a Legacy Writers Group workshop, sponsored by the Alzheimer’s Association, Maine Chapter last year.
Billed as an early-stage social engagement program, the workshops are intended to help individuals living with Alzheimer’s disease to stay active and engaged by remembering and sharing the details of their lives with others, while also helping their loved ones to process the journey.
One year later, the Plourdes are still faithfully attending the workshops, traveling from their home in Dover, N.H., to attend sessions in Kittery each month; sessions also are offered in Scarborough and Lewiston.
Now eight years into Ray’s diagnosis, the couple sees thewriting group as a great tool for helping the 81-year-old stay in the present for as long as possible.
“We are fortunate that Ray still has mild to moderate symptoms of Alzheimer’s,” said Ardena, 80. “I credit early diagnosis and programs like these for helping my husband stay connected.”
The group is facilitated by Mark Pechenik, director of engagement and community outreach with the Alzheimer’s Association.
Though Pechenik has a background in journalism, communications and human services, he emphasized that the workshops are not intended to produce professional written works – they are offered to help attendees better express themselves in meaningful ways while also producing something that loved ones can cherish for posterity.
“Often, there is lively discussion on a wide range of topics – from current events to history to personal philosophies,” said Pechenik. “In fact, at least 40 percent of group time is dedicated to conversation. We are not in the business of creating great literary works of art.… In fact, if you’ve ever made a grocery list, you qualify for the group.”
Attendees typically begin their two-hour sessions with group conversation followed by a short writing exercise on a topic or image that is offered by Pechenik and designed to jog one’s memory and elicit a response.
Each group member then has about 20 minutes to write about that subject before sharing their thoughts with the class.
Ardena praised Pechenik’s intuitiveness in presenting the subject matter.
“Sometimes Ray has difficulty expressing himself in the writing, but Mark has this magnificent way of presenting the subject in a different way that makes more sense to him. And, all of a sudden, Ray gets really animated and begins talking and sharing with excitement in a way that I rarely see anymore.”
Jessica James, director of communications and advocacy with the Alzheimer’s Association, said Pechenik’s prompts vary widely.
One asks participants to “travel back in time” and give life advice to their teenage, younger selves while another may ask participants to describe their favorite scents and what memories such odors stir within themselves.
The sessions are at times sad, such as one when the death of the Plourdes’ 2-year-old daughter more than 40 years ago came up.
“That was painful for us to remember, but also necessary in helping us to process,” said Ardena, who is sometimes still surprised to discover memories from Ray’s childhood and family that she’d never heard before.
Pechenik said he draws from a genuine interest in people and a natural curiosity in facilitating the group.
“It is vital to genuinely care about group members and to have honest intentions of helping them to write,” said Pechenik. “Sincerity goes a long way in enabling group members to ‘open up’ about their lives – they know the association is here to help them in every way possible to achieve the goal of creating a written legacy.”
Pechenik also draws from his own personal motivation in heading the project.
“My mother suffered greatly from dementia,” said Pechenik. “I always regret that I didn’t have the opportunity to help her write her own life story. If I can assist others living with Alzheimer’s in this quest, it is personally meaningful for me and, in a very real way, a tribute to my mother.”
The Plourdes’ daughter Catherine Plourde, 53, of Portsmouth, said she is pleased with her parents’ participation in the program.
“This is a great way to go back and process all those memories,” she said. “It gives my father an opportunity to talk about things he might otherwise never think about. It’s gratifying for him to be able to go back while the memories are still clear and capture them before it is too late.”
Catherine said another plus for her father is that, early on, he embraced the diagnosis.
“My father isn’t fighting the diagnosis or angry about what has happened to him,” she said. “He has come to terms with it. Now, he enjoys each day for what it is. And he is very aware and appreciative of all the support that he’s getting.”
James echoed her sentiments.
“The best way to face this disease is to access services, discuss legal and financial planning, and continue to enjoy life and be active,” James said. “Traditionally, Alzheimer’s disease has been considered an aging issue or something that you are only at risk for if you carry a certain genetic trait. We work hard to address those misconceptions and make everyone aware that if you have a brain then you are at risk for Alzheimer’s disease.”
Of course, the writers group is not always about reliving one’s life story.
A 62-year-old man from Scarborough who attends said the sessions offer support and helpful feedback from people who can relate to the struggles and limitations associated with the disease.
James said the greater goal of the social engagement programs is to offer fun and comfortable ways for people in the early stage of the disease to get out, stay active and connected with like individuals through a variety of community-based activities and social events at no cost to families.
The association also provides comprehensive education, training programs and support groups throughout the state, such as a round-the-clock, toll-free telephone Helpline for information, consultation, referral services and care management services.
“We want Maine families to know that if you are diagnosed with Alzheimer’s or another dementia, you are not alone,” James said. “There are people who understand what you’re going through and help is available for you today right here in Maine.”
“The Legacy Writers Group is just one example of something you can do in the early stages to cope with the changes ahead,” James said.
Interested individuals are encouraged to call the Helpline at (800) 272-3900 to find out more and access this and other programs and services.
Deborah Sayer can be contacted at 791-6308 or at: