From Patient to Provider: One Caregiver’s Double Journey
Dr. Cheryle Sullivan received her medical degree from Michigan State University’s College of Human Medicine and completed her residency in Family Practice. She put her experience to work as a solo family physician in private practice in Michigan before moving to Colorado to take a role as a family physician and clinic administrator.
Before all of her schooling, or even before she decided she wanted to become a doctor, Sullivan experienced her first concussion in elementary school. “I was playing kick the can when I turned a corner and ran into another kid,” she says. Five other concussions followed, including one when she was in medical school.
“I didn’t realize it until much later, but if you have one concussion, you’re three times as likely to have a second. If you have two, you’re eight times as likely to have a third. After three concussions, there’s a 50 percent chance of permanent cognitive deficits.”
In 2002, Sullivan experienced a sixth concussion from a skiing accident. Despite wearing a helmet, a seemingly minor fall backward on ice hidden beneath fresh power led to cognitive changes that were hard to ignore. “I got my bell rung,” she says.
“A few days after my injury, I was at the office, seeing patients like normal—or so I thought,” Sullivan says. “I wound up seeing a neurologist, who told me to take two weeks off. Two months later, it was obvious something was wrong. Someone in our department with experience in chronic diseases referred me to a senior care coordinator who dealt with brain injury, and she got me into rehab.”
Eight months after the skiing accident, Sullivan participated in a supervised return to work trial and failed—ending her medical career at 45 years old.
Becoming her father’s caregiver
Three years later, her 73-year-old father fell off a step in his motor home, sustaining a cervical fracture and a traumatic brain injury (TBI). After her stepmother passed away, she made the decision to bring her father to live with her and her partner and become his full-time caregiver.
Caring for her father while managing her own brain injury symptoms presented unique challenges. Sullivan describes it as “being sleep-deprived while trying to stay awake.” “It’s hard for me to multitask—I need to concentrate on one thing at a time,” she says. “I had to force myself to stay aware and be in tune with what’s going on around me because it wasn’t happening naturally.”
It’s also where Sullivan got to see the adage “If you’ve seen one brain injury, you’ve seen one brain injury” play out in real time. “My father struggled with initiation,” she says. “He’d be unable to start activities independently even when he was physically capable of doing those activities.” She relayed a story where her dad might sit in his chair, wanting a cup of coffee but not having the awareness that he could get up and make it himself. “Being his caretaker was a constant reminder that while we had both experienced brain injuries, we both had different challenges.”
Finding solutions and support
In the three and a half years she and her partner took care of her father before he passed away in 2015, Sullivan found creative ways to manage her caregiving responsibilities at the same time she was managing her own symptoms and care. “It’s a 24/7 job,” she says, “and if you have a brain injury, your batteries run out much faster than other people’s.”
She installed a motion-sensing camera that would text her when her father moved from his chair, allowing her to be outside working in the yard while still monitoring his safety. It was a great way to maintain some independence while also ensuring her father’s wellbeing.
She also discovered crucial support through her local Veterans Affairs office after she learned her father qualified for certain benefits as a wartime veteran. This opened doors to valuable resources, like weekly adult day programs to help her father get out of the house and socialize, as well as door-to-door transportation to these programs when he needed it.
But it was the annual respite care that made the difference. “The VA provided up to four weeks of respite care for caregivers,” Sullivan says. “And, you could use it however you needed to—up to two weeks at a time, overnight, and everything in between.” She and her partner were able to take two two-week vacations every year because they knew they had expert care for her dad. “I know my dad wasn’t always crazy about those trips, because it meant he wasn’t able to be at home. But I always said to him, ‘Dad, if we don’t take care of ourselves, we can’t take care of you.’”
Advice for other caregivers
When asked what advice she has for caregivers during National Family Caregivers Month, Sullivan didn’t hesitate. “Research if there are opportunities for respite care in your area, especially if you don’t have family close by,” she says. “Those four weeks of respite were how my partner and I kept going during the three years we took care of my dad.”
She also encourages caregivers to seek out local resources through their local Aging & Disability Resource Centers or statewide aging commissions. “These organizations have so many programs and services that you might not expect,” she says.
Caregiving: A tough but rewarding journey
Despite the challenges of her father’s care and her own brain injury, Sullivan finds meaning in her caregiving journey. “I don’t have any regrets about my choice to be my dad’s caregiver,” she says. “It was actually one of the bright spots in my own brain injury journey—that I was able to do this for him.” She points out that if she had still been practicing medicine, he might have ended up in a nursing home instead of having quality time with family.
She also hopes that in the future, more families will be able to take care of their loved ones if that’s what they want to do. “I’ve heard so many stories about family members wanting to be a caregiver for their parents, adult children or siblings, but they can’t afford to do it—so they wind up having to put their loved one in a care facility, which is also costly. I’d love to see the people who want to be caregivers get the financial support they need.”
For more information and support, visit Cheryle Sullivan’s Facebook page, TBI Journey, a page dedicated to brain injury education and advocacy.