As a family member or a caregiver looking after someone who has liver disease, you may need to play a variety of roles, which often means taking on responsibility for both physical and emotional support.
You can play an essential role in your loved one’s life by lending a hand at home.
- Provide support with home chores such as cleaning, cooking/meal preparation and running errands.
- Manage your loved one’s finances or financially support them.
- Listen and provide emotional support and companionship to your loved one.
- Advocate for your loved one by being their voice.
- Help them organise their medications by using a schedule, giving reminders of dose times, keeping track of supply and need of refills. Also, look out for medication-related side effects.
- Watch out for signs and symptoms of worsening liver disease, as well as side effects of medication. Early detection of new symptoms is key to being able to manage them effectively.
- Manage your loved one’s medical records and schedule their medical appointments.
- Give your loved one a lift to appointments, family/friend visits, events, shopping, etc.
- Learn about liver disease together with your loved one.
Making the most of medical appointments
Before the appointment:
- List all new symptoms (when it started and what it feels like) that you would like to discuss at the appointment.
- Write down all of the medication side effects your loved one might be experiencing, and ask the doctor how to manage them.
- List of questions/concerns and prioritise them (place them in order of importance).
- Ensure you know how to prepare your loved one for medical procedure appointments (e.g. food and fluid restrictions).
- Help your loved one make a folder of all the essential medical information (medical history, test results, medication information, upcoming procedures, medical tips/recommendations etc.) and bring them to your appointments.
- Make arrangements and plan for how your loved one will be getting to and from their appointments.
- If you are unsure, call the office beforehand to confirm the date and time of your loved one’s appointment.
- If you are having a telehealth appointment, make sure you know how to connect to the appointment ahead of time.
Questions to ask:
- How will treatment affect my loved one’s daily life?
- Is there a special diet my loved one should be following or any foods/drinks they should avoid?
- How can we contact you in case we have any questions between now and the next appointment?
- Is there anything else we can do at home to slow down the progression of the disease?
- Are there any activities that can help my loved one stay strong? What activities should be avoided?
- What are the chances for success with the treatment you’ve provided?
- What are the support services available to us?
- Should we be doing regular blood tests and how often?
This question builder will help you prepare for your medical appointment by creating a list of questions to ask your doctor. You can print or email the list to take with you. It’s help you remember everything you wanted to ask and get the most out of your time with the doctor.
Question Builder was developed by Health Direct and the Australian Commission on Safety and Quality in Health Care.
During the appointment:
- Take note of what is being discussed in case your loved one forgets any of this information.
- Let the doctor know about any symptoms and ask how they can be treated.
- Ask the doctor to explain any medical terms that you don’t understand.
- When your loved one is prescribed a medication, ask about what the drug is for and whether there are any side effects and how you can lessen them.
- Ask them to explain what all the test results mean.
Can other people in the family develop liver disease too?
There are over 100 liver diseases. Some are caused by viruses (such as hepatitis A, B and C), some are inherited (like hemochromatosis, Wilson disease) and others are caused by lifestyle and the environment.
If your loved one has viral hepatitis (hepatitis B or hepatitis C), talk to your doctor about prevention and whether you need to be vaccinated. Some families migrated from a country with high rates of hepatitis B and many family members might have long-term hepatitis B infection without even knowing it. Everyone in the family should be checked for hepatitis B in this situation.
Some conditions such as biliary atresia are extremely unlikely to affect more than one person in a family.
Metabolic disorders of the liver are usually inherited and first show up in early childhood. They may therefore occur in more than one family member. Older children in the family should be checked for these diseases, and infants should be followed carefully after birth. Prenatal diagnosis is available for some of these disorders, and genetic counselling may be useful to families who have a history of hereditary liver disease.