(adopted from the American Liver Foundation)
Caregivers are responsible for the physical care and emotional support of someone who can no longer care for them self due to illness, injury or disability. This often includes providing support with financial and legal affairs as well.
If you are the caregiver for someone with liver cancer, it’s possible you’re not completely new to this role as your loved one may have been living with some form of chronic liver disease and cirrhosis for some time now.
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:
- 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.
- Watching for signs and symptoms of progression, side effects of medication, and generally monitoring your loved one’s health condition.
- Scheduling appointments (healthcare provider, lab work, benefit enrollment)
- Coordinating or providing transportation to appointments, shopping, or visits to family and friends.
- 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.
- Communicator (and/or interpreter)
- Communicating with healthcare and social service providers on behalf of your loved one.
- Listening to your loved one and providing the necessary emotional support.
- Promoting the interests of your loved one in all situations. This may include securing proper medical care, dealing with health insurance companies, and keeping up-to-date on current information and resources.
Helpful Hints for Caregivers
Many caregivers feel unprepared to help with the needs of people with liver cancer and, at the same time, answer their own needs in their own lives. If you are a caregiver, here are some tips to help you manage these often conflicting demands.
- Keep a journal and make a list of all the things you do to help someone with liver cancer. Decide which needs you can meet and which can be handled by other people. Ask friends, family members, neighbors, and co-workers for help. Check with local community agencies, religious organizations, and hospitals or health care clinics for information on volunteer and respite care programs that may offer assistance.
- 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. Others, like us here at CCSN, may be able to assist with organizations and other resources to help guide you.
- If you make healthcare decisions for a person with liver cancer, use his or her health care team for medical support and guidance. With the patient’s permission, speak to the doctors, nurses, or other health care professionals. In your journal, create a list of questions and write down the answers so you can refer to them again.
- Take some time for you, even if it’s just a few minutes. Have coffee or dinner with friends or family, read a book, exercise, or do something you really enjoy.
- Ask for help and try to arrange for respite care for a few hours or days.
- Involve relatives in social support when possible.
- Set aside some relaxation time on a daily basis or learn what helps you cope with the stress.
- Try to follow a daily schedule to avoid disruption for you and your care-partner.
- Seek out joy in your relationships. Add fun to the routine by singing, sharing and anything to focus on the positive.
- Don’t be timid about sharing your story. Your perspective will help others.
- Ask your care-partner for input on activities, food, family outings, etc.