“Daddy, don’t you worry. I’ll do the remembering for both of us.” Those were the words Ashley Campbell spoke to her father, Glen, as she watched Alzheimer’s disease slowly take over his mind and finally his body.
The country music star, whose signature song “Rhinestone Cowboy” brought audiences to their feet, was 75 years old when his family realized he was becoming more and more forgetful, confused, and dependent on others. That was when Ashley, a musician, songwriter, and performer in her own right, wrote the song “Remembering,” with lyrics that tell of her father’s journey with the disease, for which there is no cure.
“I knew there would come a time when my father wouldn’t remember my name or who I was, so I wanted to be able to connect with him on a deeper level, as we always had, through music. Even if he forgot me, I would remember how much he loved me. I would remember for both of us,” says Campbell, who, along with her mother and others, helped care for her father until he passed away in 2017 at age 81.
On Monday, November 14, Ashley Campbell will be the guest speaker at Senior Resource Association’s “Nourishing Our Souls” luncheon at Quail Valley River Club. Through music and stories, she will tell of the experiences she and her father shared. They are alternately sad, happy, and, above all, inspirational. Campbell will also talk about how important it is that caregivers take care of themselves.
According to the National Alliance for Caregiving, one out of five Americans is taking care of a loved one. Caregiving can be a demanding, time-consuming job that can take
a physical and mental toll.
Campbell knows. That’s why she offers these words of encouragement: “If you’re a caregiver, don’t be afraid to reach out for help. No one should have to go through this alone. Also, remember to set yourself up to be able to take time for yourself, to do things just for you that bring you pleasure, whether it’s reading a book or going out to a nice dinner. You’re not being selfish; you deserve to have a life, too.”
That’s where Senior Resource Association can help make that life happen. A vital part of the not-for-profit organization’s mission is to provide enrichment and respite programs for seniors and caregivers, and the DayAway program does just that.
Five days a week, adults with physical and/or cognitive health challenges arrive at one of SRA’s two state-licensed centers, one in Vero Beach, the other in Sebastian.
Time at the centers is spent engaging in supervised activities, enjoying the company of others, and savoring a hot, nutritious lunch, along with healthful snacks throughout the day. There are more smiles than frowns in what many consider to be their home away from home.
The centers are open from 7:30 a.m. to 5:30 p.m., and while some stay the entire day, others visit for just a few hours. The time they spend there allows their caregivers to see to personal matters, relax, and recharge.
For Michael and Nora Berry, it’s also a safe place. Michael was only 51 years old and working as an executive director of sales and marketing for NBC when the first signs of Alzheimer’s started to appear and he was forced into an early retirement.
Now 65, Michael’s social skills remain strong, a fact that actually adds to Nora’s challenge as his caregiver. “People who don’t see him every day think he’s fine,” she says. “It’s hurtful when people don’t understand the reality of a long-term illness. The only one who holds the truth is the caregiver.”
Nora left a long career in education when the couple moved to Vero Beach in 2021, seeking a slower-paced lifestyle. She ultimately accepted a job as a fifth-grade special needs teacher, but it quickly became clear that it wasn’t safe for Michael to stay home alone.
A coworker told Nora about DayAway. “I stood outside for an hour crying, because I didn’t know how to cross over,” she says. “I just needed a safe place, somewhere that I knew Michael would be taken care of. A worker saw me and came out and said, ‘It will be okay.’”
Initially, Michael went to the center two days a week, while a nurse went to the Berry’s home on the other three. Now he goes to the center five days a week, enabling Nora to continue working in a job she loves. Giving herself permission to keep working is one of the primary ways Nora cares for herself.
Michael considers going to the center his job. DayAway program manager Annie Mae Stokes describes how the other men in the program gather around him. “It’s not just what he receives here, but what he gives,” she notes. He teaches them things, including how to have fun at the “Magic Table,” an interactive light projector that provides stimulating games for the people gathered around it.
He also shares his artistic talents. The walls of Stokes’s office are adorned with his drawings, including a poster of “The Dream Team,” Michael’s name for the staff at DayAway. His art is not just a casual hobby; Michael is an Emmy-award winning graphic artist. If you have ever seen the children’s show Barney, you have seen his work. He was the graphic designer for, among other things, the opening animated sequence on the show. He has also published a number of books, including Seek and Ye Shall Find, a Where’s Waldo-type children’s book in which readers search for the “Angel Twins” in detailed drawings based on Bible stories. “I always had a crayon,” Michael explains. “My art is just a gift from above.”
Married 40 years, the Berrys have three children and two grandsons. Nora explains how Alzheimer’s has changed their life together. “The love is still there,” she says, “but you have to learn to express it differently.” She elaborates, “I spent so much time in my life trying to create moments of memories,” she says. “Now it’s about creating moments of joy.”
The nature of Alzheimer’s makes it hard to know what to expect from day to day, and Nora doesn’t sugarcoat the challenges. “You can’t see the emotional support he needs,” she says, comparing Alzheimer’s to other physical ailments in which the outward signs are more obvious. Anger and frustration are normal reactions for people who are losing things to the disease, and Nora appreciates the ways the center helps Michael deal with his emotions.
She explains that coming to the program has helped her learn to talk more freely about their journey with Alzheimer’s. “There’s no shame in what life hands you,” she says, “and people are waiting and eager to support you.”
Michael chimes in. “I had no idea there was a place like this,” he says. He spreads his arms, in a gesture that seems to take in Nora, Annie Mae, and the entire center. “Look how blessed I am,” he says. “How could I be unhappy?”
DayAway is just one of the many programs and services SRA provides: There’s Meals on Wheels, GoLine, Public Guardian Program, Grocery Shopping Assistance, Emergency Home Energy Assistance, in-home services, and more. Proceeds from the November luncheon will go toward supporting SRA programs.
“Nourishing Our Souls” featuring Ashley Campbell is an event you won’t want to miss, especially if you are a caregiver or know of and support someone who is, and that pretty much includes all of us.
After her father’s death, Campbell shared a touching Instagram image of her hand locked in his, with these words: “Heartbroken. I owe him everything I am, and everything I ever will be. He will be remembered so well and with so much love.”
And remembering well is what Campbell does through her music and stories. “I can’t even put it into words how priceless it was for me to be able to perform with my dad. It was a ridiculously valuable experience, but more importantly, it was so great to watch my dad doing what he loves,” she says, cherishing the good times.
“You kind of learn to take each day as it comes, enjoy who they are with the disease. It’s important to love them for who they still are, as opposed to what you wish they still were, and don’t ever think you should, or could, do this alone.
“You have to find a support system because there are times when you can’t do anything but lean on one another,” says Campbell, who pauses and adds, “It’s a lot easier to do something like this when it’s for someone you love. It’s not hard—it’s an honor.”