Actor Bellamy Young Opens Up About Being a Family Caregiver at Age 15

Bellamy Young is known for her award-winning role as President Mellie Grant on ABC's Scandal, and the 56-year-old has collected a host of other accolades throughout her decades-long entertainment career.

But before any of that, she was just a "daddy's girl" growing up in Asheville, North Carolina.

"He was the center of my world. I just idolized him," Young says of her late father. He and her mother adopted Young at an early age, and she has fond memories of listening to bluegrass music together and driving all over western North Carolina with him for his work as an auditor.

"We thought that was the destination," Young says of the diagnosis. "We could not have understood and were not told that it was just the beginning of our journey."

Her father would go on to battle another serious liver condition, called hepatic encephalopathy (HE). Young's experience caring for him inspired her to advocate for other caregivers of loved ones with serious health conditions.

Young's father was diagnosed with HE when she was 15, and it came as a shock. She and her mother noticed changes in him, Young says, including forgetfulness, bad breath, and issues with his balance and coordination, but attributed it to his drinking. It wasn't until her father couldn't find his way home from work one day — from an office he had worked at for more than 20 years — that they realized there was a deeper issue.

Young compares the experience to that of a lobster in a pot that doesn't notice the gradual change in water temperature as it comes to a boil.

Many families of loved ones with HE share similar experiences, says Jasmohan Bajaj, MD, a professor and a gastroenterologist at the Stravitz-Sanyal Institute for Liver Disease and Metabolic Health at Virginia Commonwealth University School of Medicine in Richmond, Virginia.

"Symptoms of HE can be quite subtle and often go unnoticed by people who are familiar with the patient," Dr. Bajaj says.

This is what makes increasing awareness around HE so important, Bajaj says, noting that the condition is largely treatable and sometimes reversible if caught early.

Young regrets not recognizing her dad’s HE sooner, and feels guilty for how she behaved when he was sick.

As a teen, she blamed her dad for his condition. "Looking back now, I can separate the man from the disease, but at the time I was really young, and you're at your jerkiest when you're a teenager," she says.

She was a reluctant caregiver, she says, who was angry that she couldn't do "normal" teen things. "I wanted to go on a date and have friends over, that sort of thing, but my dad was in a hospital bed in our living room," she recalls.

She understands now, from discussing this experience in therapy, that her behavior was a reaction to the fear of losing her dad.

She also notes that the stigma her family felt around her dad's liver disease played a role in how they handled his diagnosis and care.

"We had a lot of shame around my dad's illness because it came from his drinking," she says. That shame caused them to isolate themselves rather than reach out for support, which may have helped them identify the HE earlier and alleviated some of the burden of caregiving.

Young’s father passed away in 1985 due to complications from HE.

Now, as a caregiver advocate, Young works to raise awareness of HE and let others know they’re not alone. As part of that mission, she's partnered with Salix Pharmaceuticals, which manufactures the HE drug rifaximin (Xifaxan) to have honest, open conversations with patients and caregivers about living with HE.

"We're trying to expand everyone's knowledge," she says. "It's enough to go through the disease. There's no point in adding hardship to it by feeling ashamed or by feeling alone."

Along with emotional support, Young wants to empower HE caregivers with practical tips to help their loved ones with the condition. She suggests the following.

• Log symptoms. Young has personally found writing everything down extremely helpful, including any behavioral changes and possible symptoms. When her father was sick, she and her mom used a little red notebook, but Young now prefers her phone’s Notes app. Bajaj confirms that keeping a symptom log is invaluable for care providers. "Caregivers are the eyes and ears of the clinical team at home," he says. Informing the clinical team of subtle behavioral changes can potentially help slow disease progression and reduce symptoms. Treating HE usually involves managing the condition that triggered it (such as cirrhosis), reducing stress on the liver (for example, by abstaining from alcohol), and taking medications to reduce toxins in the blood.

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• Prepare questions ahead of time. Young also suggests preparing questions for your loved one's care team before appointments to ensure you address all your concerns and make the most of your time. For example, write down any questions you have about your loved one’s symptoms, medications, side effects, and treatment options and costs.

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• Keep in touch with providers. Touching base with your healthcare team between appointments is important, too, Bajaj says, to flag potential new symptoms or changes in health or behavior, or to get answers to questions about your loved one’s medications or care. You can do this directly or use apps like MyChart and PatientBuddy.
• Learn about HE. Both Young and Bajaj say learning all you can about HE, from trusted sources like the American Liver Foundation, CirrhosisCare.ca, and the American Association for the Study of Liver Diseases, is one of the best ways to support and advocate for a loved one living with the condition. Joining a support group or community can also be helpful, as it provides emotional support and the opportunity to learn from others in similar situations. Consider the American Liver Foundation’s Inspire Community or Liver Education Advocates’ Liver Disease Support Group, search for caregiver or HE-focused groups on Facebook, or ask your loved one’s care team about support groups in your area.