Caregiver Resources

The Role of a Caregiver

Caregivers play a vital role in supporting someone who can no longer care for themselves due to illness, injury, or disability. This often includes helping with daily tasks, providing emotional support, and managing financial, legal, or medical responsibilities. 

For those caring for someone with liver disease, the role can be both meaningful and challenging. As your loved one’s condition changes, so might the type and level of care they need. Staying in close contact with the healthcare team can help you better understand what to expect and how to prepare. It’s also a good idea to ask about support services that may be available, such as social work, counseling, or respite care - resources that can offer relief and help you continue providing the best care possible. 

Roles 

The roles you take on as a caregiver are usually dictated by the severity of your loved one’s condition and his or her capabilities and needs. Some of the important roles you may play include: 
 

Caretaker 

• Taking care of household activities such as grocery shopping, preparing meals, cleaning, and managing finances. 
• Helping with activities of daily living such as bathing and dressing. 
• Managing medical care including maintaining medical records and administering or monitoring medication.  
• Scheduling appointments (healthcare provider, lab work, benefit enrollment) 
• Coordinating or providing transportation to appointments, shopping, or visits to family and friends. 
   

Navigator 

• Learning the role that each member of the healthcare team plays in your loved one’s care and how to work within, or navigate, the healthcare system. 

Communicating with Medical Team: 

• Caregivers should not act as interpreters during medical appointments or care meetings. Instead, they may be responsible for requesting that the healthcare or social service provider supply a qualified interpreter to ensure accurate and effective communication. 

Listener 

• While an important part of a caregiver’s role is to be a compassionate listener and source of emotional support, it’s essential to recognize that this responsibility should not fall on them alone. Engaging a case manager or social worker can provide critical support, helping to address the emotional and practical needs of both the patient and the caregiver.
   

Advocate 

• Promoting the interests of your loved one in all situations is a key part of caregiving. Advocacy in a healthcare setting can include ensuring your loved one receives appropriate medical care, communicating effectively with healthcare providers, navigating complex insurance or billing issues, and staying informed about available treatments, services, and community resources. It also means speaking up on behalf of your loved one when they are unable to do so themselves, and helping ensure their values, preferences, and needs are respected 

Tips: 

People with liver disease may need physical, emotional, and spiritual assistance. Often, these needs are supported by family members or friends who play a vital caregiving role. However, it’s also important to connect with the healthcare team to explore additional support services that may be available, such as counseling, social work, nutrition support, palliative care, or spiritual care resources. These services can help ensure comprehensive and compassionate care for both the person with liver disease and their caregivers. 

• Know your rights - The Family and Medical Leave Act requires most employers to provide up to 12 weeks of unpaid, job-protected leave to care for family members. Check with your employer’s human resources department for more details.  
• Seek support - Talk to other caregivers who will understand how you feel and may share how they manage similar situations. Talk with family members, friends, or religious leaders who will be supportive. Attend individual or group counseling. A social worker may be able to help you find support groups in your area. Some organizations offer in-person or online counseling sessions. Online Support Groups - American Liver Foundation Online Support Groups - American Liver Foundation 
• Be informed - If you make healthcare decisions for a person with liver disease, use his or her health care team for medical support and guidance. It can be helpful to create a list of questions and write down the answers so you can refer to them again. Creating a healthcare proxy is important so you can make medical decisions for the person you care for if they’re ever unable to speak for themselves.   Keep in mind that every state has different rules and forms for health care proxies and advance directives, so it is important to ask the medical team how to complete the right documents for your state. Planning ahead can ease your stress and ensure that the person you care for receives care that reflects their values and wishes. 
• Insurance questions?  
  For help with insurance questions, contact the patient’s insurance company directly. Please note that most insurance companies will only speak with the policyholder or an authorized representative. If you are not listed on the policy, it is essential to have legal authorization, such as a medical proxy, power of attorney, or HIPAA release form, before calling. Many insurers can assign case managers to help with questions about coverage, benefits, and access to health-related services, but proper authorization is required for them to share any information. 
• Respite care - Ask for help and try to arrange for respite care for a few hours or days. It is important to have a team of caretakers if possible.  
• Stay informed 
  Ask questions when there is a new medication, symptom or diagnosis. It may be helpful to ask for printed information or look online at reputable websites Liver Diseases: Liver Problems Types, Symptoms & Causes 
• Cope with stress  
  Try to make time for activities like regular movement, quality sleep, and moments of relaxation to reduce stress and foster a sense of balance in your life. These steps can boost energy levels, improve your immune system and contribute positively to your overall well-being. Movement and Mindfulness - American Liver Foundation Movement and Mindfulness - American Liver Foundation 
• Daily Schedule  
  Maintaining a consistent daily schedule can help create more predictable pockets of time, making it easier to prioritize and manage tasks effectively for both you and your care-partner. 
• Be Kind to Yourself 
  Caring for someone else begins with caring for yourself. It's natural to feel overwhelmed at times, and there’s no such thing as doing it all flawlessly. Acknowledge your own needs and be honest about what you can reasonably manage. Knowing your limits allows you to set healthy boundaries and ask for help when needed. Prioritizing your well-being—whether through rest, proper nutrition, quiet moments, or journaling your thoughts—helps you stay centered and more resilient in your caregiving role 
• Keep a log  
  As a new caregiver, maintaining a daily log is can be an essential tool for learning routines and staying organized. It also may provide a clear record to share with healthcare providers or other members of the care team. 
• Stay Organized and Plan Ahead 
  Keeping a simple log of your care-partner’s needs and your daily responsibilities can help you stay on top of routines and reduce stress. Being organized also means having important resources easily accessible—keep a list of essential phone numbers handy in case of emergencies or quick decisions. When you take time to plan ahead, you can manage the day with greater confidence and calm. 
• Keep Communication Open 
  Involving your care-partner in decisions, like choosing meals, activities, or family outings, helps them feel valued and included. Open, honest communication is essential, even when conversations are difficult. Avoiding certain topics can create more stress over time, while respectful dialogue builds trust and strengthens your connection. 
• Call the American Liver Foundation Help Line… (800-GO-LIVER, 800-465-4837) with questions or just to talk and get support.  
• Share your story 
  Don’t be timid about sharing your story. Your perspective will help others. You can share your story here. 

Support

As your loved one’s condition changes so will the roles you take on as a caregiver. Sometimes people find they are called upon to perform duties for which they are unprepared. Certain tasks may feel overwhelming. But there is help available. Many organizations offer caregiver training and resources to help you learn to do things safely and efficiently. And while most of these resources are not specific to people with HE, you’ll still find many tips and tools of value.

• Caregiver.com, website at www.caregiver.com
  A website and accompanying digital magazine that provides a variety of general information, tools, resources for all types of caregivers.
• AARP, website at www.aarp.org 
  Offers free webinars, caregiver discussion groups, an online health record, a care provider locater to find home health care and other services near you, and many comprehensive educational resources. Their toll-free Caregivers Support Line is 1-877-333-5885.
• American Red Cross, website at www.redcross.org
  Offers a nine-module training program for caregivers or you can contact your local Red Cross chapter for information about community-based programs.
• Family Caregiver Alliance, website at www.caregiver.org
  The FCA National Center on Caregiving provides Fact Sheets, discussion groups, telephone conferences and the Family Care Navigator, which provides state-by-state information on caregiving resources.
• National Family Caregiver Association, website at www.caregiveraction.org/
  Provides education, peer support and online resources.
• Sharing the Journey, an ALF Support Network for Caregivers, website at https://liverfoundation.org/events/sharing-the-journey-an-alf-support-network-for-caregivers/

In addition to investigating these organizations, speak to your loved one’s healthcare providers if you need help. Medicare (and in some states Medicaid) will pay for certain types of caregiver education if it’s provided as part of a patient’s medically necessary in-home visit.

In-Home Nursing

The American Liver Foundation recognizes the need for professional healthcare assistance in the form of in-home nursing. As a caregiver your knowledge of your patient’s condition may be limited and therefore you may require more professional assistance. ALF provides these alternatives as an aide in your search for in-home nursing. ALF doesn’t endorse any of these, but simply provides you with the access to them so that you can make your own decisions about which service may be right for you and your patient.

Brochures

Related Links

Thanks to some pretty terrific organizations like the AARP and others specifically designed around caregiving, the American Liver Foundation can help you by providing access to these resources and giving you a head start with your task of caring for a loved one with liver disease.

1. The Caregiver’s Handbook
2. Today’s Caregiver
3. Caregiver 101
4. Care for the Caregiver
5. Long Distance Caregiving
6. Long Term Care
7. Medication Management
8. Prepare to Care: A Caregiving Planning Guide for Families
9. Help for First Time Caregivers
10. Caregiving Q&A
11. Online Caregiving Forum
12. Meditations for Caregivers
13. Juggling Life, Work & Caregiving
14. Family Caregiver Alliance
15. The Caregivers Action Network

Caregiver Stories

Last updated on July 14th, 2025 at 04:20 pm