As Jacquelyne Froeber tells
February 21, 2025 is the day of national nurses.
My father was the funny parent.
When we grew up, we did pretty much everything together, but on Saturday morning I was my favorite. Papa switched on radio and blew up the Bluegrass music he loved while we threw a softball into the side courtyard.
Papa was the one who taught me how to throw a real pitch – and really all the important things you need to know as a child. (No insult to my mother – she was incredible – but dad only had a light in him.)
Everyone liked my father. He was an auditor of the state IRS, and yet people were really happy to see him – he was so likeable. They couldn’t help but smile when he was nearby.
When I was a teenager, my father drove me everywhere and picked me up most of the week. But he just didn’t show up one afternoon.
“He must be stuck at work,” I thought.
When he came home, he apologized – he completely forgot to pick me up. Which really shocked me as a selfish teenager. But then I started that other things were turned off. He had a funny smell that I couldn’t place. Papa was a big drinker, so maybe he was drunk day now? He had also started fluttering his hands at accidental times. I was ashamed by this new peculiarity, so I tried to accuse alcohol for it. And of course for forgetting.
A few weeks after Dad forgot to pick me up from school, he couldn’t remember how he came home from the building in which he had worked for almost 23 years. Then we knew that something was very wrong.
We knew that Papa had the liver cirrhosis – chronic liver disease – drinking too much. There was a lot of shame and stigma that surrounded this diagnosis, so that we had all tacitly agreed not to talk about it. But we thought everything that was going on now has to be something completely different.
We have never imagined that these new behaviors have something to do with his liver disease. When we brought him back to his doctor and he told us that dad had an open liver encephalopathy – that his liver disease had advanced and now influenced his brain – my mother and I were stunned. Advanced? We didn’t know that was possible. We didn’t know that his cirrhosis could ever affect his brain.
But it turned out that toxins from the liver disease built up in his bloodstream and that the structure caused brain damage. The forgetfulness, the smell, the involuntary movements – everything was hepatic encephalopathy. And from there it only got worse.
When the shock of the diagnosis subsided, the fault and sadness fell. My mother and I felt terrible as if we could have helped him, we could have got him back to the doctor if we know that we experienced a progression. We would have been more vigilant if someone had told us that we should look for changes and report. I felt like a failure as a daughter.
After the diagnosis we didn’t have much time with dad.
For decades I was carrying the shame around that I couldn’t help my father when he had hepatic encephalopathy. I didn’t talk to anyone about it. I recently saw more about the disease online and learned that the treatments had progressed and that the communities of patients and caregivers formed. For the first time I wanted to share my story because I never want someone to be alone or as long as it was as long.
Last year I joined the campaign “I wish I knew”, which helps caregivers and patients to learn the risks and symptoms of liver depephahalopathy. Care is a crucial part of the diagnosis and treatment of symptoms and thinking about how little my mother and I knew when I took care of my father to help me in every conceivable way.
As part of the campaign, I was honored to talk to various supervisors about their experiences and to publish our conversations on social media in order to raise awareness of hepatic encephalopathy. It continues to me to share so much to share these stories.
The conversations are also an important memory of practicing self -care as a caregiver, because if you try to take care of someone you love, often forget to take care of yourself. And if your well runs dry, there is nothing left to do. It is important to ask for help if you need you and it is nice to take the initiative to offer help when you have the strength.
For people who support supervisors, this can look like you say: “I can watch your children a little while going to the other room and have a good cry.” Or appear for dinner with lasagna. Every little act of love units such as raindrops in an ocean.
If you know someone in which some kind of liver disease has been diagnosed, you know that it is a trip. Your diagnosis is not your goal. It is important to find out about what the symptoms could be, how progress can look like and what could be on your horizon. If you only know what to look for, you can accept changes as soon as you take place. But you also know that not everything will happen: your trip will be unique. The most important thing is to love each other as well as possible.
When I look back, I think it’s about radical acceptance. You can’t pretend that the disease would not take place or that it will disappear. If you really start where you stand and accept at that moment, you can meet this moment with your full heart. My family and I lived in rejection and shame for so many years. It didn’t serve my father – and it didn’t serve us.
There are so much community for nurses today. And the more we bring the disease into the light and bring each other together – then we can really stand with all our power.
Perhaps the most important thing my father ever taught me was the power of positivity and joy. Now that when my fountain is exhausted, I know that I can turn to my community: I know that you keep my stories and my heart. Somehow when I am with you, I can feel my father smiled. And I can smile too.
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Our real women, real stories are the authentic experiences of women in real life. The views, opinions and experiences that are shared in these stories are not supported by healthwomen and do not necessarily reflect the official politics or position of healthwomen.