As is told Jacquelyne Froeber
February 21, 2025 is National Caregivers Day.
My dad was the funny father.
Growing up, we did almost everything together, but on Saturday mornings they were my favorites. Dad turned on the radio and exploited the bluegrass music he loved while we threw softball in the side courtyard.
Dad was the one who taught me how to launch an adequate launch, and really all the important things you need to know when I was a child. (Without offending my mother, she was incredible, but Dad only had one light inside him).
Everyone liked my dad. He was a state IR auditor, and even people were really happy to see him, so he was. You couldn’t help smiling when I was close.
When I was a teenager, my dad led me everywhere and picked me up from the school most of the days of the week. But one afternoon, he simply did not appear.
“It must have been caught at work,” I thought.
When he came home, he apologized, he completely forgot to pick me up. What, as a selfish teenager, really surprised me. But then I began to notice that other things were also turned off. He had a fun smell that he couldn’t place. Dad was a great drinker, so maybe now he was drinking day? He had also begun to flutter his hands at random times. I was mortified by this new peculiarity, so I also tried to blame alcohol for that. And, of course, for oblivion.
A few weeks after Dad forgot to pick me up from school, I couldn’t remember how to get home in the building where he had worked for almost 23 years. It was then that we knew something was very bad.
We knew that Dad had liver cirrhosis, a chronic liver disease, drinking too much. There was a lot of shame and stigma around that diagnosis, so we had all agreed to silence not to talk about it. But we think that what was happening now should be something completely different.
We never imagined that these new behaviors had something to do with their liver disease. So, when we took him back to his doctor and he told us that Dad had manifest liver encephalopathy – That his liver disease had progressed and now he was affecting his brain, my mother and I were stunned. Progress? We didn’t know that was possible. We did not know that his cirrhosis could affect his brain.
But it turned out that the toxins of the liver disease were accumulating in their bloodstream, and that accumulation was causing brain damage. Forgetting, smell, involuntary movements, everything was liver encephalopathy. And it only worsened from there.
As the shock of diagnosis disappeared, guilt and sadness sank. My mother and I feel terrible, as if we could have helped, we could have returned to the doctor before if we knew we were experiencing a progression. We would have been more attentive if someone had told us to look for any change in it and inform again. I felt like a failure as a daughter.
We didn’t have much time with dad after diagnosis.
For decades, I kept the shame of not being able to help my father when I had liver encephalopathy. I didn’t talk about that with anyone. But recently, I began to see more about the online condition, and I knew that the treatments had progressed and that the communities of patients and caregivers were forming. For the first time, I wanted to share my story because I never want anyone to feel alone or ashamed as I did for so long.
Last year, I joined the campaign “I hope I knew” that it helps caregivers and patients to learn about the risks and symptoms of liver encephalopathy. Care is a crucial part of the diagnosis and management of symptoms, and thinking about how little my mother and I knew while taking care of my dad made me want to help in any way I could.
Through the campaign, I have had the honor of talking with different caregivers about their experiences and publishing our conversations on social networks to raise awareness about liver encephalopathy. Keep mean a lot to share these stories.
Conversations are also an important reminder to practice self -care as a caregiver because when you try to take care of someone you love you often forget about worrying about yourself. And when your well dries, there is nothing left. It is vital to ask for help when you need it, and it is beautiful to take the initiative to offer help when you have strength.
For people who support caregivers, that may seem to say: “I can see their children a little while you go to the other room and cry well.” Or appear with lasagna for dinner. Any small act of love added like rain drops in an ocean.
If you know someone who has been diagnosed with some kind of liver disease, know that it is a trip. His diagnosis is not his destiny. It is important to educate what the symptoms could be, how progression can be seen and what could be on your horizon. Just knowing what to look for will help you catch any change as soon as they are happening. But he also knows that not everything happens to everyone: his trip will be unique. The most important thing is to love through him the best they can.
Looking back, I think what to face is radical acceptance. You cannot pretend that the disease is not happening or that it will disappear. If you really start where you are and accept the moment you are getting into, then you can know that moment with your complete heart. My family and I live so many years in denial and shame. It did not work my dad, and it didn’t help us.
For today’s caregivers, there is a lot of community. And the more we bring the disease to light and join, it is when we can really face this with all our strength.
Perhaps the most important thing my dad has taught me was the power of positivity and joy. Now, when my well is exhausted, I know I can turn to my community: I know they hold my stories and my heart. Somehow, when I am with them, I can feel my dad smiling. And I can also smile.
Do you have your own real women, real stories that you want to share? Let us know.
Our real women, real stories are the authentic experiences of real life women. The opinions, opinions and experiences shared in these stories are not backed by healthy women and do not necessarily reflect the official policy or the position of healthy women.
