When Lana Wilhelm’s husband suffered a stroke in 2021, the longtime nurse suddenly found herself on the other side of the hospital bed, overwhelmed, unprepared, and searching for answers.
“My husband had a pretty massive stroke,” Wilhelm says. “He’s doing well now, but it was a real eye-opener. Not only that I could lose this person, but that there was a huge gap in support for caregivers.”
A St. Louis native and registered nurse of more than 40 years, Wilhelm had spent her career caring for patients. But as a caregiver for a loved one rather than a medical professional, she quickly realized how little guidance existed for people in her position.
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“They would come in and say, ‘Do you have any questions?’” she says. “But I didn’t know what I needed to know.”
That uncertainty became a turning point and ultimately led her to launch the Stroke Caregiver Connection, an all-in-one online resource offering education and support for those navigating life after a loved one’s stroke.
“I sat there in that chair, and it was overwhelming. There was a lack of resources for caregivers and a lack of information,” she reflects. “That was my ‘aha’ moment that there was a real gap and a real need.”
That realization became the foundation for her work. Before creating Stroke Caregiver Connection, she began documenting what she wished she had known, eventually publishing two books—Stroke and the Spouse and Stroke and the Caregiver— and connecting with other caregivers through local hospitals and support groups.
“I thought, I don’t want anyone else to go through this,” she explains.
Through the centralized online hub, Wilhelm can now meet caregivers where they are, whether at a hospital bedside, at home, or coordinating care from across the country. Educational videos and guides, references to groups and programs, essential products, checklists, and answers to many questions that caregivers may have are all housed on the website for the benefit of caregivers near and far.
“There’s a large group of adult children who live out of state,” she says. “They fly in for the crisis, but then what happens next?”
That’s where Stroke Caregiver Connection comes in. On a single website, caregivers can quickly find nearly any resource they might need, easing the initial panic and uncertainty.
For locals, Wilhelm continues to make an impact offline, facilitating support groups at hospitals across the St. Louis area. These sessions provide caregivers a safe space to express emotions and ask questions. While her clinical background helps her translate the healthcare system, she shows up not as a medical professional, but as someone who has lived it.
“I don’t try to be the end-all, be-all,” she says. “I just want to be the advocate who gets them the information and support they need.”
For Wilhelm, the work is an ongoing process of making meaning out of a life-altering experience.
“What started as helping me adjust to this new life became a passion,” she shared. “When the caregiver is educated, supported, and understands what’s happening, the stroke survivor reaps the benefits.”
