After Losing 4 Family Members to Liver Disease, an Advocate Urges Caregivers to Hold On to Hope

October is Liver Cancer Awareness Month, and the Global Liver Institute’s #OctoberIs4Livers campaign is drawing attention to the families who support loved ones through diagnosis and treatment. Few people understand that role better than Yolanda Carvajal, a liver health advocate and founder of BeeLiver.

Carvajal has lost four family members to liver disease and served as a caregiver for three of them. She spoke with The Educated Patient about what caregiving looks like day-to-day and what she wants new caregivers to know.

Small symptom changes can matter

Carvajal said the biggest lesson from caring for her mother was how closely caregivers need to watch for changes. It can be hard to tell whether a symptom comes from the disease or from treatment, she said, and details such as a loved one losing their train of thought are worth raising with the care team.

“You have to be really observant of your family members’ symptoms,” Carvajal said.

Food can become a daily struggle

Nutrition was one of the most difficult parts of caregiving for her family. Treatment can alter a person’s sense of taste and smell, making it harder to encourage healthy eating. Carvajal said caregivers should focus on healthy proteins and consider working with a nutritionist, including one who specializes in cancer care. Virtual appointments can make that easier to arrange.

From personal loss to a foundation

Carvajal’s mother died in 2021 during the COVID-19 pandemic, when Carvajal had little outside support. About a month later, her father-in-law was diagnosed with liver cancer. Those experiences led her to found BeeLiver to help people in her Miami community navigate liver cancer and liver disease. She directs extra funds from her events to research at the Sylvester Comprehensive Cancer Center.

“There’s always something you can do,” she said.

Caregivers need rest, too

Carvajal said caregivers often believe they must be present every moment, but rest helps them stay observant and prepared for appointments. During her mother’s hospital stay, she took breaks to walk and pray, and later she gave her mother-in-law time away while she cared for her father-in-law.

“So I think you really need to slow down and give yourself grace to say it’s OK for me to slow down,” she said.

Building a full care team

For families facing a new diagnosis, Carvajal recommends educating yourself about the liver, connecting with support organizations such as the Global Liver Institute and Liver Advocates, and encouraging gentle movement even when a loved one feels tired. She also stresses coordination among oncologists, hepatologists, primary care doctors and nutritionists.

“It’s a team effort. It’s not only the doctors saving their lives, it’s the whole group of people. It’s the caregivers. It’s the nurses,” she said.

Her advice is simple: “Hope. There’s hope.”