As a care partner of someone living with cirrhosis, you may share many of the same emotions the person with cirrhosis is experiencing: fear, isolation, or even anger. To avoid burnout, it’s important to take care of yourself too.
What to Expect
Depending on how well the person living with cirrhosis is, you many need to play a variety of roles while providing support. Some people with cirrhosis don’t need care support, but if their condition gets worse and especially for people with hepatic encephalopathy, a care partner is often needed. Your care partner role may change over time, and even day to day, as the condition of the person living with cirrhosis changes. You may need to adjust the level of care partnering to meet the changing needs of the person living with cirrhosis.
It’s important to encourage independence for the person living with cirrhosis, but also support and help them with tasks as needed. Finding the balance is key. You might need to support the person living with cirrhosis by helping with physical activities, mental health, psycho-social well-being, spiritual well-being and managing finances:
- Medications (using a schedule, giving reminders, keeping track of need of refills).
- Watching for signs and symptoms of cirrhosis complications and knowing when to get help.
- Learn about cirrhosis on this page so you feel confident knowing what to watch for.
- Keeping track of medical records and appointments.
- Organizing transportation to medical appointments. It’s helpful to attend the appointment as well, to help your loved one remember and understand what was discussed.
- Basic everyday activities: feeding, bathing, going to the bathroom, grooming, dressing, walking, chores and errands.
- Nutrition and managing a diet as potentially prescribed. Learn about eating well with cirrhosis on this page
- Thinking about getting health aids in place before they are actually needed so you are prepared (shower chair, walker, bed rail, etc.).
- Managing the stress of the person living with cirrhosis. If stress occurs too often or lasts too long, it may make a health problem worse. Find tips on stress management here.
- Being supportive and available to help while encouraging as much independence as possible.
- Knowing when to step back and let them do more for themselves as they are able.
- Providing support and companionship. You might not be actively doing anything, but the fact that they have somebody there with them during such a vulnerable time could do wonders for them.
- Being their advocate and voice.
- Maintaining support with others, such as friends, other family members, and community members or organizations.
- Maintaining spiritual practices and connection with religious or spiritual groups.
- Assist with paying bills, developing/keeping a budget, etc.
Tips for Your Self Care
- Take care of your own emotional and physical needs. It is crucial to remember that you also need a break from the disease and the toll it can take on you.
- Continuing to do the things that bring you joy.
- Aim to take one day at a time and make the most out of every situation.
- Understand that frustration placed on you by the person with cirrhosis is not purposeful or personal. The illness process takes a significant toll on one’s physical and emotional well-being.
- Write down (journal) your thoughts and feelings.
- Find coping skills to help you deal with and work through stressors. Visit this website to add more coping strategies to your list!
- Take one day at a time and make the most out of every situation.
Ask for help
- It is okay to ask for help. Seek out others who could possibly share the load to avoid burnout
- Consider weekly meetings to keep others informed on important matters and to check in on how everyone is feeling.
Knowledge is power
- Read a lot and gain as much insight about the person’s condition as possible.
- Plan for the worst-case scenario but always hope for the best.
- Reading about others’ care partnering experiences can be informative and provide perspective.
Informal and formal support
- Talking with other care partners can provide not only practical caregiving information, but also a sense of shared experience and emotional support. Knowing you are not alone in this journey.
- Formal support groups for care partners. It can be helpful knowing what others have experienced and what to expect.
If the person living with cirrhosis becomes very sick or has difficulty getting dressed, walking or bathing, you may be able to receive home care services. Talk to your healthcare team to learn more about this, or explore self-referral options in your community.
Before the appointment
- Help the person living with cirrhosis make a folder with their medical information (medical conditions, prior surgeries, medications, etc.) to bring to appointments.
- Write down any new symptoms (and when they started), as well as questions/concerns.
- Review any instructions given prior to the appointment(food restrictions, when to arrive, etc.).
During the appointment
- Pay close attention to what is being discussed in case the person with cirrhosis forgets afterward.
- Let the healthcare provider know about any new symptoms, questions, or concerns.
- Ask for clarification of any medical terms, test results, or treatments that you don’t understand.
- Understand what the next steps should be before you leave.
Questions to ask
- How will this (condition, treatment, etc.) affect my loved one’s daily life?
- What type of diet should the person with cirrhosis be following?
- Are there any activities that can help? What activities should be avoided?
- How can we contact you in with questions?
- Is there anything else we should be doing?
- Ask your healthcare team to help you find the resources you need.
- If your financial circumstances change, payments may become difficult to manage. Check with your bank or financial advisor to see if they may be able to provide some short-term solutions.
- Many employers belong to an Employee Assistance Program (EAP) and provide free counselling services to employees. Contact your benefits advisor at your workplace for details on how to access this support.
- Check out the resource links below.
The information on this page was adapted (with permission) from the references below, by the Cirrhosis Care Alberta project team (physicians, nurse practitioners, registered nurses, registered dietitians, physiotherapists, pharmacists, and patient advisors).
This information is not intended to replace advice from your healthcare team. They know your medical situation best. Always follow your healthcare team’s advice.