Alzheimer's advocate: 'There is no right way' as a caregiver
Decatur Daily - 9/1/2019
Sep. 1--An Alzheimer's caregiver for 18 years and an advocate for more research funding for almost a decade, in Decatur last week, said "there is no one right way" in caring for a loved one with the disease.
"You have to find your own way as a caregiver," said Lynda Everman, of Birmingham, a founding member of three national networks under the umbrella of UsAgainstAlzheimer's and founder of Clergy Against Alzheimer's.
"No matter how prepared you are, you will fall short of your own expectation," Everman said. "But you need to learn to forgive yourself. We are all humans and we all make mistakes."
Everman spoke last week at the 17th annual Lucy and John Caddell Alzheimer's Conference at Epic Church in Decatur.
The event, designed for family and professional caregivers, is the primary fundraiser for the Mental Health Association of Morgan County's Alzheimer's Program and funds its programs for the entire year, according to Katie Gilliland, the program's coordinator.
The Alzheimer's Program served 652 clients last year through its programs, Gilliland said.
Everman said that each situation and decision caregivers face is unique to them, and that they should trust their instincts.
Her father started showing symptoms of dementia in 1994, the same year former President Ronald Reagan published his letter to the American people announcing his diagnosis of Alzheimer's disease.
Just three years later, Everman's husband, at 57, was diagnosed with mild cognitive impairment.
"It's anything but mild," bringing on forgetfulness and lapses in judgment, she said. "I had no idea where we were going."
Like some caregivers, "I was silent," she said, and tried not to say anything that would cause her husband to lose hope or become despondent.
"For 12 years, I watched over and cared daily for him, alone and without a break," she said. In 2009, she made the "wrenching decision" to move her husband to assisted living.
"It became apparent I couldn't care for him at home," she said. The disease would not only "claim his life but my life as well."
In the U.S., there are 5.8 million people with Alzheimer's and more than 16 million caregivers. In Alabama, 92,000 people age 65 and older have Alzheimer's, and there are 304,000 caregivers.
Life is far from normal for Alzheimer's caregivers, Everman said. Whether trying to dress or shower a loved one, or having a dinner out with friends, constant planning and patience are required.
To lift her spirits, she would think of the Maya Angelou quote: "Do the best you can until you know better. Then when you know better, do better."
Numerous books on the topic were helpful, she said, though one publication, "No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia," was the "most transformative."
"I was always an advocate for my husband and his care," including him in any conversations with his medical team, she said.
The couple continued to go to concerts and for walks, and she brought her husband his favorite desserts.
"As his voice faltered, my voice became stronger to advocate on his behalf," she said.
Everman's advocacy efforts started before her husband's death in 2012, speaking out at town hall forums, advocating in the state capital and taking part in fundraisers.
She went on to be an editor and contributor to "Seasons of Caring: Meditations for Alzheimer's and Dementia Caregivers." She and her current husband, Don Wendorf, who also spoke at the Decatur conference, were senior editors for "Dementia-friendly Worship: A Multi-faith Handbook for Chaplains, Clergy and Faith Communities," and co-authored "Stolen Memories."
They are advocates for increased funding for research on Alzheimer's and related dementias and regularly speak at conferences and churches on dementia and caregiving.
Everman and fellow advocate Kathy Siggins campaigned for an Alzheimer's semipostal stamp, for fundraising and awareness, which was released by the U.S. Postal Service in November 2017. The stamp has raised about $890,000 for Alzheimer's research at the National Institutes of Health.
Everman is now seeking congressional support for a proposed $350 million increase in fiscal 2020 funding for Alzheimer's research at the NIH, and she's also campaigning for extending the sales of the Alzheimer's stamp.
U.S. Sen. Susan Collins, R-Maine, the chair of the Senate Aging Committee, has joined three other senators in introducing legislation to authorize the current Alzheimer's stamp for an additional six years.
"I do believe that together, we can make a difference," Everman said. "I will not rest until we find a cure."
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