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By Thomas Goldsmith
At Candlelight Reflections, there’s no shame in shedding tears.
At the event recently by the North Carolina State Fairgrounds waterfall, organizers and volunteers had tissues ready for about 50 people who attended the event in honor of people with dementia and their caregivers.
The hour-long ceremony at sunset closed with people joining a large circle, all naming the people they honored — a spouse who has died, a relative living with the disease or caregivers for a person with neurocognitive disease. The event originated in Raleigh more than 20 years ago and has spread to cities including Asheville and Greenville.
“We wanted to have something to remember those who are living with Alzheimer’s and those that we have lost,” said Alice Watkins, former executive director of Alzheimer’s North Carolina. “It’s really a special time to get together and remember.”
According to a March report by the NC Institute of Medicine, about 160,000 people in the state have Alzheimer’s disease. That number is expected to reach 210,000 during the next nine years.
“We send our support to anyone who is touched by any kind of dementia,” Alzheimer’s North Carolina program director Lisa Levine said as she opened the event.[portfolio_slideshow slideheight=400]
Violinist Karen Hall, of West Jefferson, played classical pieces as people gathered for the ceremony, and a keening “Over the Rainbow” as the circle formed. Former Triangle resident Hall is a caregiver for her mother, Joan Hall, who lived in Michigan when her condition was diagnosed.
Recently, Joan Hall entered a nearby assisted-living facility, a frequent destination for people whose disease has progressed beyond family members’ ability to provide primary care. Karen Hall remains a caregiver even though Joan is in long-term care.
“I took her to the mountains,” Karen Hall said. “She thinks she’s back in Michigan.”
She said making sure the facility is doing a good job is a task of its own.
During the first part of the event, relatives read poems and other memorials revealing the clamor of emotions that arise as a loved one loses her memories, becoming in effect a different person.
“This is not my home. Nothing here is familiar or reassuring,” Cary resident Jo Ann Pfirman read from the poem “Remember Me,” written from the perspective of a person with neurocognitive disease. “If I could go home, I would surely find my memory there.”
Pfirman’s husband, Tom, was diagnosed with Alzheimer’s disease in 2002 when he was 57; he died in 2007. The family has raised $120,000 for Alzheimer’s NC through the effort Tom’s Team, in which he participated for two years.
“I’ve been coming for 11 years,” Jo Ann Pfirman said of Candlelight Reflections. “Now I volunteer.”
Gary Fuqua was working as a state official when his mother, Doris, of Carthage, was diagnosed with Alzheimer’s disease. She was able to to remain in her home with the help of caregivers during the week.
“For five years, every Friday afternoon, I’d drive down and stay with her during the weekend,” Fuqua said.
The small crowd of people, many known to each other through years of dealing with this disease, dispersed in the growing dark after Candlelight Reflections, some to resume care of loved ones, some returning home only to memories.
Violinist Karen Hall, of West Jefferson, played classical pieces as people gathered for the ceremony, and “Over the Rainbow” as the circle formed.
Hall is also a caregiver for her mother, Joan Hall. Video credit: Thomas Goldsmith