Memory Care Coalition hopes to help caregivers and those in need find the resources available to people with memory challenges.
After a night spent in an emergency room with his grandmother, Gary Barg ate breakfast as he sifted through paperwork spread out over a table at a cafe in Miami Beach.
Though his first exposure to the gritty reality of caretaking for a loved one occurred months before when he visited his mother — a “serial caretaker” — in South Florida, it was not until that November morning that the cogs would click.
“There must be a magazine for caregivers,” he thought, hoping for a place to turn to for cohesive advice.
At that time, there wasn’t. That was more than two decades ago.
Today, an assortment of organizations seek to connect Central Florida’s share of care providers with resources, in an effort to mitigate the potential stressors of caregiving. Barg created Today’s Caregiver magazine and a Fearless Caregiver Conference series, which recently stopped in Orlando on its 20th tour.
“I came at this as a caregiver’s caregiver,” said Barg of his effort to assist caregivers across the U.S. “These folks need to be cared for, but the last [person] you can say that to is a caregiver.”
In 2014, AARP reported that about 4 million caregivers in Florida offer $29 billion in unpaid care each year.
“For years we’ve been trying to get a group of people together to form a memory coalition because there’s so many caregivers that are just desperate for information, and they’re sponges, and we need to have one place that they can go to,” said Arden Courts Marketing Director Susan Tibbals.
Karen Tucker, President of FirstLight HomeCare, said the group’s goal is to create one central location for care providers to obtain all of the information they need relating to memory care. Members of the coalition collaborate to maintain a community calendar at cfmcc.org.
In addition to opportunities for caregivers to share their personal experiences with one another, a panel representing companies such as Senior Resource Alliance spoke about everything from captioned telephones to how to handle various insurance questions. Local exhibitors were available for questions.
“[There is a] font of wisdom in the room with you,” Barg said. “And that’s empowering, and that creates a fearlessness.”
He stressed how imperative it is that caregivers don’t feel isolated and alone.
“Caregivers [are a] sneaky lot,” Barg said. “And I say that in [the] most loving way.”
His mother, who managed his father’s health and weight during his battle with bone-marrow cancer, had mastered the art of the “show.”
It took years — his father’s death and the decline in his grandparents’ health — for her voice to crack one night on a weekly phone call.
“She just couldn’t hold [the] facade much longer,” Barg said.
His mother, whose immunity had always been strong, was run down, sick.
“It took its toll,” he said. “Emotionally draining for the strongest person.”
Barg stressed the need to build a team around the person who is ill. This group, Barg said, might include doctors, therapists, family, neighbors, nurses and, in some cases, a geriatric-care manager.
“Sometimes, it’s because your loved one isn’t going to listen to you,” Barg said.
Cathy Dunlap, an aging-life professional-care manager for The Cameron Group, said many caregivers call her in desperation.
“A lot of times what I run into the most,” Dunlap said, “they just expect too much from themselves.”
Dunlap said she assesses medical needs and connects families with resources.
“I look at the caregiver too,” Dunlap said. “Are they ill themselves? What kind of resources do they need?”
According to statistics presented by the Caregiver Action Network site, 55 percent of caregivers neglect doctor’s appointments, and 23 percent of care providers self-assessed their health as “fair or poor.”
“If you’re not healthy and you’re not taking care of yourself,” Dunlap said, “then you can’t be a caregiver; you can’t be an effective caregiver.”
At AARP.com/iheartcaregivers, care providers can peruse the personal experiences of other caregivers and share their own stories, said Abby Walters, AARP field coordinator for Greater Orlando area.
“We feel like it’s really important to recognize what caregivers have done,” Walters said. “[They are the] backbone of long-term care in this country.”
Among Dunlap’s tips: Maintain an effective communication network to ask for help when it is offered.
“My No. 1 message that I tell people,” Dunlap said: “It takes a huge team of people.”