07/25/2026
Dear Caregivers,
Below you will read the journey of Caregivers who care for someone with liver failure. When your liver stops working properly your mind goes into Hepatic Encephalopathy (HE as we refer to it.) Also known as The Monster 👽 I had it while waiting for my liver transplant. My poor wife and Caregiver Sarah Jones loved me enough to keep me around and I thank God for that blessing 🙌
Now we help others through their Transplant journey because we lived through it and understand that Caregivers Syndrome is preventable with the right help and compassion ❤️
If you are a Caregiver or have ever been a Caregiver you know exactly why it's important to reach out and ask for help. Many find this too uncomfortable to talk about but the true facts are....you were thrown into it and there is no reason to try and learn about it through research and Doctors bu****it. Learn from someone who has walked in your shoes, did all the hard work and understands exactly what you are going through. Mentors give their love freely and with the understanding how difficult Caregiving is...it sucks big time!!
Caring Hands Village
Hepatic Encephalopathy Doesn’t Erase the Past: A Caregiver’s Truth
By Melaine Smith
Founder, Whole Person Liver Collective
When someone develops hepatic encephalopathy (HE), everything changes.
Families suddenly find themselves learning about ammonia, lactulose, rifaximin, hospitalizations, falls, confusion, sleep disturbances, and personality changes. Friends and family often rally around the person living with liver disease, offering compassion and understanding.
But there is another person whose story often goes untold.
The spouse.
The partner.
The caregiver.
As someone living with hepatic encephalopathy caused by metabolic dysfunction associated steatotic liver disease (MASLD), I understand firsthand how devastating this condition can be. My HE was not caused by alcohol, yet I know the fear, uncertainty, and frustration that come with this diagnosis. I also know that HE affects more than the person living with the disease. It touches every relationship around them.
Through years of facilitating liver disease and hepatic encephalopathy support communities, I have noticed a recurring theme among caregivers. Many struggle with guilt because they don’t always feel hopeful or joyful. They wonder why they cannot simply separate the illness from the person.
The answer is often more complicated than HE alone.
Every Relationship Has a History
Some marriages are built on decades of mutual love, trust, and partnership. When HE develops, those couples often grieve the loss of the person they once knew while facing the disease together.
Other relationships have a very different history.
Some caregivers arrive at an HE diagnosis after years of living with alcohol use disorder, addiction, dishonesty, broken promises, emotional manipulation, financial hardship, or unhealthy relationship patterns. Those experiences leave lasting wounds.
For these families, HE did not create every problem.
Sometimes it simply arrived in the middle of an already difficult story.
HE Is Real. So Is Personal Responsibility.
Hepatic encephalopathy is a medical condition that affects brain function. It can impair judgment, memory, reasoning, impulse control, emotional regulation, and behavior. Many people living with HE say or do things they would never say or do when their condition is well controlled.
Those symptoms deserve compassion and appropriate medical treatment.
However, HE does not erase an individual’s history.
If someone was kind, respectful, and loving before developing HE, caregivers often recognize those changes as part of the illness.
If someone was emotionally abusive, manipulative, controlling, or violent long before developing HE, those behaviors may continue. In some cases, the confusion and poor judgment associated with HE may make those behaviors more unpredictable or more difficult to manage.
That does not mean HE causes abuse.
It means caregivers may be trying to manage both a serious neurological complication and years of unresolved relationship trauma.
Those are two separate challenges.
Loving Someone Doesn’t Mean Ignoring the Past
Caregivers often hear well meaning advice such as:
“Remember, it’s the disease talking.”
Sometimes that’s true.
Sometimes it isn’t.
Sometimes it is a combination of both.
A spouse can feel compassion for the effects of HE while still carrying deep hurt from years before the diagnosis.
Those feelings are not selfish.
They are human.
Loving someone does not require pretending that past wounds never happened.
Staying Is a Personal Decision
One of the most difficult decisions any caregiver faces is whether they can continue in the relationship.
Some remain because they deeply love their spouse and recognize that the illness has changed them.
Some stay because of shared values, family, finances, or hope for better days.
Others realize the relationship has become emotionally or physically unsafe.
There is no universal right answer.
Choosing to stay is an act of love.
Choosing to leave an unsafe relationship is not a failure.
Both decisions require tremendous courage.
Abuse Is Never Part of the Treatment Plan
This is one conversation we need to have more openly.
A diagnosis of hepatic encephalopathy does not require a caregiver to tolerate abuse.
Whether harmful behavior existed before the illness or has become more difficult to manage because of cognitive impairment, caregivers deserve safety, dignity, and support.
Setting boundaries is not abandoning someone.
Protecting yourself is not selfish.
Seeking help is not giving up.
Caregivers Need Healing Too
Caregivers often spend so much energy caring for another person that they neglect themselves.
If you find yourself overwhelmed by resentment, grief, fear, exhaustion, or simply feeling alone, you are not alone.
Support is available.
Individual counseling can help process years of accumulated hurt.
Couples counseling may be beneficial when both partners are willing and able to participate safely.
For families affected by alcohol use disorder, Al-Anon offers understanding, education, and support from others who have walked a similar path.
Liver disease and caregiver support groups provide a safe place to share your experiences with people who truly understand the unique challenges of this journey.
Asking for help is not weakness.
It is part of surviving.
To Those Living With HE
If you are reading this while living with hepatic encephalopathy, this article is not intended to shame or blame you.
Many people develop HE from conditions completely unrelated to alcohol, including MASLD, viral hepatitis, autoimmune liver disease, genetic disorders, or other causes.
Others are living with the consequences of alcohol use disorder and have worked incredibly hard to achieve sobriety, rebuild trust, and make amends.
Healing relationships is possible.
But healing begins with honesty.
If your spouse or family member is carrying years of pain, their feelings deserve compassion too.
Just as patients deserve understanding for the challenges of HE, caregivers deserve understanding for the burdens they carry.
The Whole Person Perspective
At Whole Person Liver Collective, we believe there is room for both compassion and accountability.
We can advocate fiercely for people living with liver disease while also supporting the spouses, partners, children, parents, siblings, and friends who walk beside them.
Whole person care means recognizing that liver disease impacts entire families, not just individual patients.
Sometimes healing means rebuilding trust.
Sometimes healing means setting healthy boundaries.
Sometimes healing means learning to forgive.
Sometimes healing means seeking safety.
Every journey is different, and every person’s story deserves to be heard with dignity and without judgment.
Our hope is to create a space where patients and caregivers alike can speak honestly, receive support, and find hope together.
Because healing isn’t just about treating a liver.
It’s about caring for every life that liver disease touches.
About Whole Person Liver Collective
Whole Person Liver Collective believes liver disease affects more than an organ. It affects relationships, families, identities, careers, finances, and emotional well being.
Our mission is to support the whole person and everyone who walks beside them through education, advocacy, evidence based resources, and honest conversations that reduce stigma while promoting hope.
Supporting the Whole Person. Strengthening Every Relationship Touched by Liver Disease.
Written by
Melaine Smith
Founder, Whole Person Liver Collective
