Florence Frohman comes into the Gathering at Westlake Hills Presbyterian Church with a walker. Once the band starts playing, she switches into her dancing shoes and twirls around the dance floor.
Earlier, Sharon Cartlidge tells the reminiscence group how every year for her birthday her father would make homemade peach ice cream. The members of the group go through the ingredients in ice cream and pick out the flavor that most fits their personality. They create a story all about ice cream — the theme of the day.
At lunch, visiting grandchildren and a college-age volunteer dress like soda jerks and hold trays of sprinkles, syrups and whipped cream to top the bowls of ice cream.
Bingo King E. Lee Higgins gives out prizes for anyone who can answer his trivia questions about ice cream. Bingo Queen Martha King keeps track of what letter and number combinations have been called. Almost everyone becomes a winner and gets a piece of chocolate.
The Gathering, which started in 2001, is the brainchild of Debbie Wilder. Every Tuesday morning, volunteers and people with dementia including Alzheimer’s disease share stories, create art, go bowling and sing and dance together.
It gives the participants a place to be accepted for their disease and a break from the isolation that follows a diagnosis. Volunteers find meaning and purpose in the work, which doesn’t feel like work at all. Caregivers relish a four-hour break to run errands, see friends or go to doctors’ appointments.
Wilder, 62, couldn’t predict that the Gathering would grow from four initial participants to 33, with a waiting list, and that more than 20 other Central Texas groups — as well as groups in Dallas and Arkansas — would take the general idea of a weekly respite program and create their own.
“This is really the result of a higher power,” she says. “Clearly this is what needed to be done.”
“I’m not a morning person, but every Tuesday, I get up at 5:30. I’m so excited to go,” she adds. “People think it’s really depressing, but it’s not.”
Raised with compassion
Wilder grew up in Houston with a father in the oil business; they moved all over the world. They always returned to Houston every one to two years before heading off to the next location.
In high school, she went to three different schools.
“If anything, it made me a little bit more flexible,” she says. “I’m able to read new people.”
As a teen, she worked as a candy striper, delivering things to patients and washing out test tubes of blood.
“I loved being in hospitals,” she says.
She thought about going to medical school, but one college career counselor told her, “You don’t want to waste all that time going to medical school when you’re going to get married and have kids,” she remembers.
Instead, she became a nurse and worked in the pediatric intensive care unit.
She met husband Fred Wilder, now a plastic surgeon, as a nursing student at Texas Children’s Hospital in Houston. He was a medical student. She remembers she was holding a baby when he, some other residents and the attending physician came by while making their rounds. “I’m very shy,” she says.
The attending physician started asking her questions about the baby, and she was able to answer all of them. Fred Wilder came up afterwards and asked her if she wanted to have coffee.
They now have two children: Lauren, 33, and Brian, 30.
In 1986, they moved to Austin. It was a compromise. Fred Wilder wanted to move to Colorado. Austin was about as far as Wilder wanted to be from her family in Houston. They now vacation in Colorado, where they love to hike.
She stopped working in hospitals once her kids were born. The first reason was because Fred was a resident and had to work hospital rotations every other weekend, which made her working 12-hour shifts unrealistic. Also, the nature of the pediatric intensive care unit was suddenly too relatable.
“It’s one thing to do this before you have kids, but after …? I would think, ‘This could be my child,’” she says. “I wasn’t emotionally ready for that.”
She does still work with kids, though. She and her husband go on a mission trip at least once a year with Austin Smiles, a nonprofit group that does plastic surgery operations such as repairing cleft palates on children. She’s been to El Salvador, Guatemala and Cuba and serves as a nurse in the recovery room.
The seed for the idea
Wilder’s mother, who died in July, brought the idea of a respite to Wilder. She kept asking Wilder to come visit a program in Houston where she was volunteering.
“She was saying how much fun it was and that I’ve got to come and take a look,” Wilder says. “She dragged me over.”
Like many people, Wilder thought it would be depressing, but it wasn’t. She thought her church should do something like it.
Wilder didn’t specifically have someone with Alzheimer’s in her family, but she did have a grandmother who moved in with her parents when she was in college that had some sort of memory loss, possibly from a head injury.
The idea for a respite at Westlake Hills Presbyterian might have stopped there, but Wilder was persistent. She went to her pastor and asked if she could have space in the building, as well as put a mention in the church bulletin looking for volunteers.
She also did her research and found that there were adult day cares but nothing like this.
“Everybody said this could be helpful,” she says.
She also established guidelines for the participants. They had to be living at home, be ambulatory and be able to talk and feed themselves.
The initial volunteers met every week leading up to a designated start date of Sept. 18, 2001. In their final meeting the week before, they were sitting in the church’s lower level and the church staff announced on the overhead speakers that planes had flown into the World Trade Center. They went upstairs and watched the events of 9/11 unfold on TV.
One of the first big decisions was whether to open the next week or to delay. Wilder decided to go ahead.
The Gathering opened that day with four participants and six volunteers.
Growing the program
It grew slowly at first with donations and help from the church and participating families, who were asked to contribute $2-$3 for the cost of the lunch.
Seeing what Wilder was doing, the local chapter of the Alzheimer’s Association began to approach other churches and synagogues to see if they would start similar programs.
“It really takes one key person willing to say, ‘I’ll be in charge,’” Wilder says.
“Churches and temples are the perfect places to have programs like this,” she says. “They have empty space during the week and a wealth of volunteers.”
Interested people visited the Gathering to see how it worked and leaned on Wilder for information and ideas. She reminded them that the Gathering didn’t start off at 33 people. It grew as it got more volunteers and participants.
Theressa Lyons started Circle of Friends at Congregation Beth Israel in July 2004. Circle of Friends followed everything the Gathering did — with the exception of the number of people. It caps its roster at 15 participants.
“She’s just very personable and really a love in terms of her compassion and her interest in this issue from early onset all the way through,” Lyons says of Wilder. “I found her very generous and very helpful.”
The respites have become an informal network. Often participants will spend one day at one and another day of the week at another. The directors call one another when they are having a particular problem with a participant or in general to see if the others are seeing the same things.
At the same time people were starting new respites, Wilder began another program for people in the early stages of memory loss. She was approached by someone who was newly diagnosed and needed to do something to help his brain.
“He did not want to lose it,” she says, “but he didn’t want to play Bingo, either.”
Wilder started New Connections, a group for people who had some memory loss, in 2003. Participants worked in small groups with various activities to keep their minds as active as possible for as long as possible. Activities included book club, current events study, brain teasers, painting and song writing. Each week they would spend three hours doing activities followed by an hour and a half of a professionally facilitated support group.
Annette Juba, the deputy program director at AGE of Central Texas, says a lot of people get a diagnosis and then get told, “See you in six months.” “They wanted to feel they were doing something of value,” Juba says.
Wilder ran New Connections until 2011, when she asked AGE to take it over. AGE has been able to add more locations as well.
People often start at New Connections, now called Early Memory Loss Support Program, and transition to a respite program when the time comes.
“Participants move seamlessly from New Connections to the Gathering since they take place in the same rooms and share a few volunteers,” Wilder says. “It was much harder for caregivers. It’s like if a child is in the advanced reading group and then teachers move them to the remedial reading group.”
Wilder also started a support group for the caregivers that meets once a month when the Gathering is meeting.
Christal Flint, whose mother, Sharon Enloe, attended the Gathering until early August when she died, says her father, David Enloe, has gotten a lot out of the support group.
“You’re very anxious about this — finally to have someone say you are not doing this wrong,” Flint says.
The caregivers get to know one another and become a network of support, Wilder says. “Only when you’ve walked in these shoes do you know how to offer support to someone else going through it.”
Caregiver Leila Cassady also attends the support group and says that the respite gives her the chance to do grocery shopping, get her nails done and, every now and then, see a friend. “It’s important to feel normal and be able to get out and socialize.”
Cassady, whose husband, Bill, has been at the Gathering for 18 months, says Wilder’s “very empathetic to everyone. She can relate to everyone’s situation and offer suggestions. She’s organized and caring.”
Bill Cassady likes to laugh and be outgoing. Sometimes he comes up with funny comments, Leila Cassady says. At home, it’s getting to be too quiet, she says.
“It’s such a wonderful model of an idea of how this kind of place should be,” Cassady says.
As the program grew, Wilder was able to hire an assistant for 10 hours a week to help with paperwork and making phone calls. It also hired a male attendant for four hours a week to help men in the bathroom. Several of the volunteers are also nurses like Wilder.
Wilder says she has about 50 volunteers on the roster and most of them are retired. In the summers they get grandchildren of volunteers or participants and college students on break. Many have had loved ones who have had some form of dementia.
“It’s a godsend to me,” says volunteer Ted Eubanks, who at 90 is one of the oldest volunteers and older than many of the participants. “I lost my wife about three years ago. This has really been a meaningful place. I get a whole lot more than I give.”
The participants range in age from 50 to 99, but people as young as 43 have enrolled in the program. Most live with spouses; about one-fourth live with their children. Occasionally, they get someone in his or her 50s who lives with parents. A couple of times the Gathering has had someone become a participant after being a volunteer.
The standards of living at home — being ambulatory, being able to feed themselves and being verbal — still apply for new participants coming into the program. As the disease progresses, though, volunteers try to keep the participants coming to the program as long as the disease isn’t a safety issue for the participants or the volunteers. The progression of the disease and length of stay are different for everyone.
Usually the caregiver knows when it’s time for a participant to no longer come. It becomes too difficult to get their loved one up and dressed in the morning or they are mostly sleeping during the day.
Sometimes, a family isn’t ready to let go. Wilder lets the participant stay if the family can bring an attendant to help with care.
“It’s not like a business where we have to be businesslike about it,” Wilder says. “Sometimes you have to go with your heart.”
Participants come from anywhere from Georgetown to Wimberley, and people who are not in another respite get priority.
Each volunteer becomes attached to a different participant, and vice versa. The care and concern the volunteers feel often extend beyond the four hours at the Gathering. Wilder attends many funerals, and often hears specific accolades related to volunteers who delivered meals or visited the participant in the home or hospital.
A typical Gathering
Every Tuesday, the volunteers gather at 9 a.m. for a meeting and a prayer.
Participants and volunteers enjoy coffee at 9:30 a.m. It gives the participants a transition. “A lot of the time, by the time they get there, they are worn out,” Wilder says.
There’s a card for each participant that tells the volunteers how that participant likes their coffee or tea or hot chocolate.
From 10 a.m. to 11 a.m., they have a choice of activities: art, dominoes, reminiscence group or a physical activity like bowling, indoor volleyball or miniature golf. The participants gravitate based on their abilities. It will change with the disease.
Everyone comes together for chair exercise and a musical program, followed by lunch, bingo and trivia. The Kitchen Krew, a group of 10 other volunteers, prepares the meals based on the theme that day.
The volunteers know to watch out for certain participants who are wanderers — and others who take things.
“Debbie is so good about telling us, ‘It’s not about Joe in there. It’s about the disease, not about Joe,’” says Pat Mercado, who is Wilder’s assistant.
Volunteer Maryanne Jones says Wilder always has a good word for everyone. “If someone is restless or unhappy, she knows exactly what to say. It’s a God-given talent.”
Sometimes some of the men in the program get anxious and start looking for their wives. To keep them safe and keep them from wandering into the parking lot, the volunteers have to be creative. Wilder will pull out a note from “the wife” saying that she’ll be there at 1:30 p.m., or she’ll call her daughter on the phone. Lauren Wilder pretends to be the wife and reassures the husband that she’ll be there soon to pick him up.
Debbie Wilder has a quiet way about her, often in the background, doing the work, while some of the more boisterous volunteers lead the activities. She runs the program like a group effort — even though the volunteers defer to her.
“I never hear her say, ‘This is the way it’s going to be,’” Higgins says. “She’ll say, ‘Do you have any suggestions?’ Then she’ll use the best answer. It’s all about everyone having a good time.”
She is the guiding light for it, Higgins says.
“She has a great sense of vision,” Juba adds. “She saw that this was a need and she did something about it. Every initiative she took on, she comes up with a need, does some research and does something about it.”
About this series
In Giving Ways, Nicole Villalpando introduces you to Central Texans who have started philanthropies that help us connect to our community and beyond. Find more Giving Ways stories at Austin360.com.
Find more about the Gathering as well as additional videos and photos at thegatheringatwhpc.org.
Find a local Alzheimer’s respite at alz.org/texascapital.