One day in 2001, Ginny Jameson was driving on a Pennsylvania road when she was T-boned in an intersection. The crash caused a concussion and traumatic brain injury.
Her husband, Kevin, soon noticed changes in Ginny’s behavior.
“She was a smiley person, a big, broad, bubbly vivacious woman, and then she got more acrimonious and more difficult,” says Jameson, 59, of Doylestown, Pennsylvania.
Ginny would later be diagnosed with dementia caused by the brain injury.
Kevin felt helpless as he watched his wife lose her memory, her ability to walk and talk and feed herself. By 2009, Ginny was living in a skilled nursing facility.
“Dementia is a fatal condition,” says Jameson, who retired from his marketing and sales job at Honeywell in 2013 to have more time to care for Ginny. “It was excruciating to see her shut down.”
Eventually, Ginny’s organs failed. She died at 73 in a hospice with Kevin by her side, on July 29, 2014.
But even before Ginny died, the grief-stricken Jameson wanted to use his experience to help others with a loved one with dementia.
In 2013, he created the nonprofit Dementia Society of America, to fill what he saw were large voids in a one-stop shop for information and help with the many forms of dementia.
“Everything was Alzheimer’s, Alzheimer’s, and I learned that it’s not all Alzheimer’s,” he says. “There wasn’t a broad-based dementia organization in existence where I could turn to and pick up the phone and get answers. At least I couldn’t find one.”
Jameson discovered that Alzheimer’s, the most common of the many forms of dementia, cannot be definitively diagnosed until after death with an autopsy examination of the brain tissue. He discovered that a vitamin deficiency and even a bladder infection in the elderly can mimic dementia.
The all-volunteer nonprofit has a 24-hour hotline, manned primarily by Jameson, who fields calls from family members seeking help and guidance. Its website provides comprehensive information on the condition.
The Dementia Society has raised almost $500,000 since its inception — mostly from small, individual donors — and had given out some $350,000 to hundreds of music and arts programs helping those with dementia.
But Jameson is not just writing donation checks.
In December, he flew to Ontario, Canada, to present a $1,000 check to an adult day program for seniors with dementia that was used to fund a new music therapy program.
“I was absolutely shocked he would take the time to do this,” says Catherine Grenaway, director of client services at Etobicoke Services for Seniors. “He is so connected with this cause and he just wanted to meet the people who would be helped.”
Not only meet them, but dance and sing with them.
“He got right in there and joined in,” Grenaway says. “The clients literally lit up, he was able to laugh and connect with them.”
Social worker Dan Cohen, 65, whose Music and Memory program creates personalized iPod playlists for seniors with dementia to reconnect them with their favorite music, received several grants from the Dementia Society.
“It’s unusual to see someone running a nonprofit with such a significant mission, do it totally volunteer and create something that is so helpful,” Cohen says.
The good Jameson is doing helps keep Ginny’s memory alive — and he even named the society’s grant program Ginny Gives.
The pair met on a disco dance floor on Kevin’s 24th birthday in 1982. Ginny was 40 and the mother of two children.
“She was very vivacious and young acting and beautiful and we just hit it off right away,” says Jameson. “Age never mattered to us.”
They married in 1985.
“She was a ski patroller, a paramedic, very athletic and she loved doing things,” recalls Jameson. “We travelled the world together and we had a great time.”
Soon before Ginny died, Kevin’s last words were “I love you.” At that point she was unable to talk, but he feels she heard him, and that she knew in those last months it was “the end.”
“It is why we focus on music and art and touch because we know those are some of the last things to go,” Jameson says. “And you can reach someone in no matter what state they are and touch them deeply.”
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