November is National Family Caregivers Month, a time to honor the vital role caregivers play in the lives of their loved ones. This month, ALS TDI will spotlight inspiring stories of people who provide essential care for those living with ALS, celebrating their compassion, resilience, and unwavering support.
Listen to enough ALS stories and you’ll hear about people from all walks of life who choose to take on the challenge of caregiving. Often, they’re family members — spouses, parents, or children who step up to care for their loved one with ALS. Some are paid professionals who specialize in caringfor people with disabilities. For Jessica “Jess” Story, a large part of her caregiving team is made up of her friends, both old and new, who dedicate their time and efforts to making her life better.
Jess is a 35-year-old mother of three who was diagnosed with ALS in 2020. More than five years since she experienced her first symptoms, she now needs help from her caregivers and assistive technology to breathe, eat, and communicate. To deliver this 24/7 care, she relies on her family as well as some paid caregivers.
However, Jess’s caregiving team is also bolstered by four of her closest friends — some of whom she has known for years and some who she’s met since her diagnosis. There’s Lacey Dragone, her “ride or die” first caregiver, who she met 12 years ago when their kids played soccer together. There’s Rebecca Lee Church, a friend from the gym she met just before her symptoms started. After her diagnosis, Rebecca immediately offered to help and still comes over for a “girls’ night” and sleepover every Wednesday. Payton Mitchell joined the care team this year after she and Jess met in a women’s group at their church. What started as just helping on the weekends has turned into a full-time, 40-hour-a-week job as one of Jess’ professional caregivers.
Then there’s Austin Scott, who helps on Fridays and occasional Saturdays. The story of how he became a caregiver is certainly the most unique. Two years ago, Jess came across Austin, a volunteer firefighter who owns a mobile auto detailing service, on Instagram. Austin and Jess tried to schedule a time for him to come service her vehicle, but it took several weeks to nail down an appointment. In that time, Austin got to know her story through social media, and, by the time they met, already knew he wanted to do more than just clean out her van.
When they finally met, Jess mentioned she had never been to a rodeo before, and Austin offered to bring her to one.
“And then the rest was history” she later wrote in an Instagram post. “He has always offered to help whenever I have been in a bind. He introduced me to my church family Selah. Now he works with me every other Friday and some Saturdays! I am so grateful for our friendship and all the adventures we have been on.”
“One thing that stood out is just that she is a person of faith, and so am I,” says Austin of their first encounter. “The day I met her, I could tell there’s just something different about Jess. I said, ‘I’m here for a purpose. Not to serve myself, but to serve her, in a way.’ It was about seeing her for who she was and not for her situation. And then I learned more about ALS, and I felt like we had to live our lives to the fullest while we had the time.”
Austin soon became a dear friend and adventure partner, helping Jess to get out in the world and check items off her bucket list. In the two years since they’ve met, they’ve been to multiple rodeos, concerts, and made two trips to the beach. Recently, they even brought Jess’ van — the thing that originally brought them together — to the woods for a night of camping.
However, Austin also helps Jess in many smaller, but just as important, ways. Once or twice a week he shows up to help her with the basic tasks of everyday life — to, as he puts it, “be her hands.” He’ll help clean the van and the house, cook, feed her meals, and even take her son to and from school. They’re all tasks that he’s proud to take on with Jess’ other friends and family, who together make sure she is taken care of every hour of every day.
“There’s always that saying, ‘It takes a village to make something happen,’” he says. “I might be good at doing certain things, and another person might be good at something else. So, we all work together to make Jess feel comfortable and seen. To make things as easy as possible. I definitely want to give credit to the others. You can’t do this alone.”
For Jess, having her friends so intimately involved in her care means much more than just having extra hands around to help with her needs — it provides a note of positivity among the many challenges of living with ALS.
“We need help with everything,” she says. “ALS is always taking. So, it’s nice when friends give.”
For others out there with friends facing ALS who want to get involved, Austin says the most important thing is to show up for them — to listen to their needs and be open to helping them however you can.
“I feel like the best thing you can do for someone is just to be there,” he says. “To try new things. It might be scary, and you don't know what you're doing at first. Learn what the other person wants. Have patience. This has been a huge learning moment for me, to be patient and how to slow down. Just ask the question — ‘How can I help?’”
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