As told to Jacquelyne Froeber
February 21, 2025, is National Caregivers Day.
My dad was the fun parent.
Growing up, we did pretty much everything together, but Saturday mornings were my favorite. Dad would turn on the radio and blast the bluegrass music he loved while we tossed a softball in the side yard.
Dad was the one who taught me how to throw a proper pitch — and really all the important things you need to know as a kid. (No offense to my mom — she was amazing — but dad just had a light inside him.)
Everyone liked my dad. He was an auditor with the state IRS, and still people were genuinely happy to see him — that’s how likeable he was. You couldn’t help but smile when he was around.
When I was a teenager, my dad drove me everywhere and picked me up from school most days of the week. But one afternoon, he just didn’t show up.
“He must have gotten stuck at work,” I thought.
When he got home, he apologized — he completely forgot to pick me up. Which, as a selfish teen, really shocked me. But then I started noticing that other things were off, too. He had a funny smell that I couldn’t place. Dad was a big drinker, so maybe now he was day drinking? He’d also started flapping his hands at random times. I was mortified by this new quirk, so I tried to blame alcohol for that too. And, of course, for the forgetting.
A few weeks after dad forgot to pick me up from school, he couldn’t remember how to get home from the building he’d worked in for almost 23 years. That’s when we knew something was very wrong.
We knew Dad had cirrhosis of the liver — a chronic liver disease — from drinking too much. There was a lot of shame and stigma surrounding that diagnosis, so we had all just silently agreed not to talk about it. But we thought whatever was going on now must be something else entirely.
We never imagined these new behaviors had anything to do with his liver disease. So when we got him back to his doctor and he told us that dad had overt hepatic encephalopathy — that his liver disease had progressed and was now affecting his brain — my mom and I were stunned. Progressed? We didn’t know that was possible. We didn’t know his cirrhosis could ever affect his brain.
But it turned out toxins from the liver disease were building up in his bloodstream, and that buildup was causing brain damage. The forgetfulness, the smell, the involuntary movements — all of it was hepatic encephalopathy. And it only got worse from there.
As the shock of the diagnosis wore off, the guilt and sadness sank in. My mom and I felt terrible, like we could have helped him, we could have gotten him back to the doctor sooner if we’d known that we were experiencing a progression. We would have been more vigilant if someone had told us to look out for any changes in him and report back. I felt like a failure as a daughter.
We didn’t have much time with dad after the diagnosis.
For decades, I carried around the shame that I hadn’t been able to help my dad when he had hepatic encephalopathy. I didn’t talk about it with anyone. But recently, I started seeing more about the condition online, and I learned that treatments had progressed and that communities of patients and caregivers were forming. For the first time, I felt like sharing my story because I never want anyone to feel as alone or ashamed as I did for so long.
Last year, I joined the “I Wish I Knew” campaign that helps caregivers and patients learn about the risks and symptoms of hepatic encephalopathy. Caregiving is a crucial part of diagnosing and managing symptoms, and thinking back to how little my mom and I knew while caring for my dad made me want to help out in any way I could.
Through the campaign, I’ve been honored to talk with different caregivers about their experiences and post our conversations on social media to raise awareness about hepatic encephalopathy. It continues to mean so much to me to get to share these stories.
The conversations are also an important reminder to practice self-care as a caregiver because when you’re trying to care for someone you love you often forget to care about yourself. And when your well runs dry, there’s nothing left to give. It’s vital to ask for help when you need it, and it’s beautiful to take the initiative to offer help when you have the strength to.
For people supporting caregivers, that can look like saying, “I can watch your kids for a bit while you go into the other room and have a good cry.” Or showing up with lasagna for dinner. Any little act of love aggregates like raindrops in an ocean.
If you know someone who’s been diagnosed with any sort of liver disease, know that it’s a journey. Your diagnosis is not your destination. It’s important to educate yourself about what the symptoms might be, what progression can look like and what might be on your horizon. Just knowing what to look for will help you catch any changes as soon as they’re happening. But also know that not everything happens to everyone: Your journey will be unique. The most important thing is to love each other through it as best you can.
Looking back, I think coping is about radical acceptance. You can’t pretend the disease isn’t happening or that it will go away. If you really start where you stand and accept the moment you’re in, then you can meet that moment with your full heart. My family and I lived so many years in denial and shame. It didn’t serve my dad — and it didn’t serve us.
For caregivers today, there’s so much community. And the more we bring the disease into the light and we bring each other together — that’s when we really can face this with all our might.
Perhaps the most important thing my dad ever taught me was the power of positivity and joy. Now when my well is depleted, I know I can turn to my community: I know they hold my stories and my heart. Somehow, when I’m with them, I can feel my dad smiling. And I can smile too.
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