If you are caring for someone with liver disease, you are doing one of the hardest kinds of work there is. Some of it is medical. Most of it is logistical. All of it is exhausting in a way that is hard to describe to anyone who has not done it. We have done it. We know.
Before transplant, the days can feel like a rotating set of labs, scans, appointments, symptoms that change by the hour, and paperwork that seems to multiply when you look away. Two national organizations exist specifically to help family caregivers carry that load. Both have been doing this work for decades. Neither costs anything to use.
Caregiver Action Network
Caregiver Action Network is a national nonprofit that has supported family caregivers for more than 30 years. They focus on education, peer community, and practical resources. Their Caregiver Toolbox is a free online resource that includes guides on medication management, communication with medical teams, financial and legal basics, and self-care for caregivers. They also run a Help Desk, called the Caregiver Help Desk, that connects caregivers with a trained Caregiver Expert by phone, email, or chat. Free, confidential, and not affiliated with any specific disease or hospital system.
If you find yourself trying to figure out how to manage medications, organize a household around medical appointments, or just talk to someone who understands the work you are doing, Caregiver Action Network is built for exactly those questions.
caregiveraction.org
Family Caregiver Alliance
Family Caregiver Alliance has been supporting family caregivers for more than 45 years, since 1977. They are based in California but operate nationally. Their work includes a navigation service called CareNav, which gives caregivers a personalized online dashboard, planning tools, and access to a Family Consultant who can help map out a care plan. They also offer guidance on respite care, legal and financial planning, and direct caregiving skills.
Family Caregiver Alliance is particularly strong on the structural questions that arise during long care journeys: how to plan for the months ahead, how to access respite when you are burning out, and how to think through the financial side of caregiving. If you are trying to build a sustainable system around caring for someone with liver disease, this is the place to start.
caregiver.org
How to use both
The two organizations overlap, but they do different things well. Caregiver Action Network is stronger for day-to-day practical support and peer connection. Family Caregiver Alliance is stronger for structural planning and long-term sustainability. Many caregivers use both. There is no need to choose.
A few practical suggestions from us, drawn from what we wished we had known earlier:
Keep a one-page home command center. Medications and doses. Allergies. Transplant coordinator phone number. Pharmacy contact. Your own phone number in case someone else has to make a call from your phone. Tape it inside a kitchen cabinet or fold it into a wallet. When your brain is overloaded, this one page becomes the most important document in the house.
Build a clinic kit that lives in the car. A copy of the medication list. A pen and notepad. Hand sanitizer. A snack. A light layer because clinic exam rooms are inexplicably cold. The kit means you never start an appointment scrambling for the one thing you forgot.
Use a shared calendar. The patient, the primary caregiver, and any backup caregivers should all be able to see appointments, labs, and changes in plan. Memory is not a reliable medical record when you are tired.
You are not just helping
If you are reading this, you are doing the work of keeping someone alive, steady, and hopeful through one of the hardest medical journeys a family can face. That is not a side job. That is the job. You deserve real support, and it exists. Caregiver Action Network and Family Caregiver Alliance are two of the most reliable places to find it.
The Foundation will continue building resources alongside theirs. If there is something specific you need help finding, our support line is at nationalfriends.org/support/.
SOURCES
Caregiver Action Network. “About CAN.” Accessed May 2026. https://caregiveraction.org/about-us/.
Caregiver Action Network. “Caregiver Help Desk.” Accessed May 2026. https://caregiveraction.org/caregiver-help-desk/.
Family Caregiver Alliance. “About FCA.” Accessed May 2026. https://www.caregiver.org/about-us/.
Family Caregiver Alliance. “CareNav.” Accessed May 2026. https://www.caregiver.org/caregiver-resources/care-navigator/.
Thanks for reading! Subscribe for free to receive new posts and support my work.