The woman behind Respite Ministry for those with memory loss
MONTGOMERY, Ala. (AP) — The balloon volleyball net had been put away, and the freshly painted kites shown to the group when Daphne Johnston stepped to one side of the room and hit a button.
Music oozed out, signaling that the day’s Respite Ministry had reached its end, but also starting a final flash of fun for both the participants, the volunteers and, of course, Johnston.
For a few moments, it might as well have been 1961 again.
Ray Charles’ “Hit the Road Jack,” a former No. 1 hit and Grammy award winner, coursed through the room.
It set off smiles and, for a few, elegant dance moves, along with some impromptu — though muted — karaoke, harkening back to Camelot and JFK, the Berlin Wall and Roger Maris.
It put a happy exclamation mark on the four hours that Monday’s 30 participants — who suffer from memory loss — and 15 volunteers had spent together.
With Johnston in the middle of it all, right down to one of the last dance steps.
“She’s dynamic,” said 79-year-old Kate Lindsey, who has been a volunteer for the last six months and whose late husband was a participant for two years.
“She has the perfect personality for this.”
Johnston has headed the Respite Ministry since its humble beginnings in 2012 through the growth that it continues to experience today.
From 20 participants the first year, Respite now helps as many as 50 per day.
From the basement of Montgomery’s First United Methodist Church, the program is now in a newly renovated wing of the church.
It started with the cooperation of six churches and a synagogue, a blueprint that has been mimicked in Dothan, Auburn, Guntersville and twice in Birmingham.
Just this month, Demopolis started a program, not long after another in Cullman. Another opens next month with another set for this fall.
What began in that basement has garnered national attention. Johnston, the Montgomery Advertiser’s March Community Hero, will even speak to an international Alzheimer’s conference in May.
“We want to push the faith-based volunteer model all over the world,” Johnston said. “Or at least across the country.”
Montgomery’s Respite centers around Johnston and assistant Laura Selby. It’s a four-hour program each Monday through Thursday for those suffering from Alzheimer’s or dementia or Parkinson’s — and for their family members.
On Monday, the 20 participants — “a small day,” Johnston said — painted kites early in the day.
The finished products were splashes of well-manicured colors, each kite destined to be given to a child and fulfill its purpose this spring in a stiff wind on the end of a string.
By early afternoon, there was a card game at one table and a jigsaw puzzle at another. Bettye Johnson, 78, was working to arrange colorful ribbons into a design.
Nearby, the biggest group was engaged in a raucous game of balloon volleyball. One of the most-active volleyball players, Johnston said, is a retired military officer who is always quiet and reserved — until the balloons and volleyball net come out.
“Everything we do is with a purpose,” Daphne Johnston said.
Bettye Johnson, a retired librarian for Montgomery Public Schools, has been going to Respite for about six months, her daughter said. Rochelle Johnson, 58, said she saw a difference the first day.
“Somebody asked her name, and she said it,” Rochelle Johnson said. “She hadn’t done that in a while. Since, she’s been much more responsive and loves being around people.”
Dan Lindsey, Kate’s husband, was just as enthusiastic, Kate said.
She was so grateful for what Respite did for Dan, who died in February 2017 at 81 years old, that she wanted to give back to the program.
“He came as long as he could, and he enjoyed it thoroughly,” Kate said. “I appreciated so much what it meant to him and to me. . If he didn’t have something like that, he would have just sat at home and watched TV.”
Having Respite also helped Rochelle Johnson and Kate Lindsey, they said.
Johnson, on Monday, used the time to shop for a new washer and dryer. Sure, she would have loved if her mom would have been there, too.
“But it would have taken a little longer and it wouldn’t be as much fun for her to sit and wait on me,” Rochelle said. “Here, I know she has something to do.”
Kate Lindsey said having Respite led to her making new friends with people experiencing the same illness in their families.
“We understood each other because we were walking the same road,” Kate said.
The First United Methodist Church’s health and welfare committee, to use Daphne Johnston’s word, “assigned” Johnston with starting Respite in 2012.
Johnston, a 41-year-old with two children “and a very supportive husband,” made it a passion.
Respite began with two workers, including Johnston, and had 20 participants the first year.
By the third year, a foundation gave Respite a $100,000 grant to both use as scholarships for participants and to help start similar programs elsewhere.
Respite costs $40 per day, but “nobody has been turned away,” Johnston said. (By comparison, long-term private care costs $60,000-$80,000 annually. Respite is $4,000-$6,000.)
Respite’s participants range from as young as 52 to as old as 101, Johnston said, though it can be difficult to differentiate between the volunteers and participants.
“Everybody is helping somebody at some point in the day,” Johnston said.
Everyone wears the same style nametag — though Johnston’s includes an odd name.
One picture she regularly shows is of three women walking with one using a cane and obviously older than the others. The older woman has no memory loss, while an obviously younger one suffers from early-onset Alzheimer’s.
“We want to not just give rest to the caregiver, but to give a sense of purpose to the loved one,” Johnston said. “It means so much when they’re loved again.”
According to the Alzheimer’s Association, one-third of seniors die with Alzheimer’s or another dementia. In the United States, someone develops Alzheimer’s every 66 seconds.
Also, 35 percent of caregivers for those with Alzheimer’s or other dementia say their health has deteriorated from the care they’re giving.
“Can you imagine if you never hear the words ‘thank you’ again?” Johnston said. “One thing about the disease is you can feel so isolated, but when you get to Respite you hear all of this.
″‘We’re glad you’re here.’ ‘We missed you last week,’” Johnston said. “You are needed as a person.”
Johnston grew up knowing she wanted to help people.
Her mother was a county extension agent around her hometown of Anniston — where Johnston, nee Mobley, was a state championship volleyball player at Donoho.
Johnston went on to LaGrange College and majored in gerontology and public administration. (Daphne Mobley also played volleyball and remains LaGrange’s all-time leader in assists and aces.)
“This fits all of that,” Johnston said, “but I’m so glad to be away from the for-profit world. This church has told me to do nothing but the right thing.”
Johnston, in a nod to one of the program’s early participants, still begrudgingly — or maybe not — wears a nametag that doesn’t feature her name.
But it’s an apt description of her role: Boss.
“I’m just so much younger than everybody else, they wouldn’t believe me unless I have this one,” Johnston said, mentioning the man who first judged her worthy of the name.
“He said, ‘Sugar, you sure are cute, but you are bossy.’”
Rochelle Johnson said the enthusiasm is contagious — and her mother appreciates it, too.
“The first word that comes to mind (about Johnston) is passionate,” Johnson said. “There is always some kind of activity, and everything is well-organized.
“She’s very enthusiastic about having people involved.”
Johnston is fond of saying “there hasn’t been a bad day here in five years,” as Respite has grown out of First United Methodist’s dark basement into a renovated wing — with the sun shining through stained-glass windows.
Plans called for the renovated wing to cost $180,000. Within four hours, without the church sending out the first request, received gift pledges of $85,000, $50,000, $50,000 and $20,000.
“God is with this program,” she says.
Each Wednesday, Johnston sends out a group email to her volunteer staff about staffing for the following week. The 45 slots quickly fill. Last year, the volunteers totaled 12,000 hours of service.
“It becomes a family in a way,” Kate Lindsey said. “You feel like family. It’s unconditional love, and it doesn’t go away.”
All the smiles soon shuffle out the door, Ray Charles’ voice still on the tip of their tongue, though there’s no doubt — in mind or spirit — they’ll be back.
Johnston breaks the newfound silence with a quote by author Lisa Genova, whose novel, “Still Alice,” is about a 50-year-old woman with early-onset Alzheimer’s.
“We can’t cure Alzheimer’s, but we can cure loneliness,” Johnston said.
“That is Respite.”
About the Respite Ministry
The Respite Ministry helps those suffering from memory loss due to Alzheimer’s, dementia, Parkinson’s or stroke — and their caregivers. To participate, volunteer or donate, call 334-834-8990 or email firstname.lastname@example.org.
Information from: Montgomery Advertiser, http://www.montgomeryadvertiser.com