For the Caregiver
Being a caregiver for someone with a chronic illness such as HCC is challenging, but it can also be rewarding. To prepare yourself for what is ahead, it may help to make a plan that outlines how you can best help. Start with these suggestions and remember that your loved one’s needs will change over time. Flexibility is going to be fundamental to your role.
Attend medical visits. Learn from the medical team about HCC, possible treatment options and other aspects of care. Ask for copies of test results, procedures, treatments received, etc.
Introduce yourself to the health care team. Get contact information for key team members, and find out when and how to reach out with questions and concerns. Timely topics may require a phone call or text, while others may be perfect for email or a health care portal (if available). Make sure you have signed all forms that allow you to communicate with your loved one’s medical team and have set up an account on the portal.
Give and track medication. Taking medication as prescribed is crucial for treatment to work as intended. Create a chart or set reminders or alarms to make it easier to stay on schedule with medications taken at home and by appointment at the hospital or doctor’s office.
Help manage side effects. Learn other side effects to watch for, when they likely will occur and what to do if they happen. Use a tracking sheet to help you remember details that you can share with your medical team. Download a tracking form at PatientResource.com/Tracker.
Surround yourself with support. Seek out a local or online cancer support group, peer-to-peer counseling organization or a cancer caregivers’ support group. It can help immensely to talk with another person who has been in your shoes.
Be empathetic. Treat your loved one the same as you did before, especially if either of you feels guilty about the diagnosis. Be proactive about connecting with other HCC survivors and caregivers to learn how they manage the feelings associated with disease stigma.
Practice self-care. To be the best source of support, you must care for yourself. Self-care will help you feel re-energized, happier and better prepared for your ongoing caregiving role. Commit to leading a healthy lifestyle. Think about the activities that make you happy. Go to the gym. Talk a walk. Do yoga. Get a massage. Read a book. Find something to laugh about every day; it is a great way to reduce stress.