Caregivers: How to Be an Advocate for Your Loved One

Your loved one will receive a lot of information at once. It can be hard to keep track of everything. That’s where you come in. Your loved one may need some or a lot of support at different times. As a caregiver, you can help them by:

• Maintaining an up-to-date schedule. Add all their appointments to your calendar, so you’ll know when and where they take place. It can be an electronic or paper calendar—whatever works best for you. Go to their appointments with them, or at least help them get there. That way, you’ll know that they haven’t missed an appointment. If they take medicines, make sure you know when and how much. Help them stay organized, so they take all medicines on time and correctly. When you help keep track of appointments and medicines, your loved one can focus more on their health and healing.
• Breaking down information. Your loved one will receive lots of information about treatment. Write down all treatment schedules and options for them. They may not be able to process everything, so explain it to them slowly and in small pieces. This will help them to understand what is happening, when it is happening, and what options are available to them.
• Keeping a daily log. Take daily notes on any side effects your loved one has or questions they or you’d like to ask. Then your loved one can go over the list with their healthcare provider at their next appointment. Also have an updated copy of your loved one's medical history and a list of their medicines and supplements, including who prescribes them, what the dose is, and when they are taken. Include the pharmacy they use. The provider might need to review this list if they are considering any new treatments or medicines. It also helps when there are several healthcare providers providing care for your loved one.

As a caregiver, it is important to know your loved one’s healthcare team and work well with them. You may even need to be their point of contact.

• Get to know the team. Introduce yourself or have your loved one introduce you to their team. The team could include 1 provider or several, depending on the treatment your loved one is having. It might include a medical oncologist, radiation oncologist, and surgeon, among others. Keep a list of the team members’ names and titles. Know who to call for specific questions and keep an open line of communication with them. Building trust will make the harder conversations and choices easier.
• Attend appointments with your loved one. If your loved one says it’s OK, go to their appointments with them. Your loved one should do most of the talking, but you can ask your own questions. Take notes for your loved one on all upcoming treatments, side effects, procedures, and diagnoses. These appointments can be overwhelming. Having an extra set of ears can be helpful. Ask the healthcare provider to repeat or explain anything that may be confusing. The 2 of you can review notes later and then follow up with the healthcare team if you have any questions.
• Ask for your loved one’s consent to work with the team. Talk with your loved one and their healthcare team about them signing a release form (may be called a HIPAA form). This will allow the healthcare team to discuss your loved one’s care with you when they are not present. Without it, the healthcare team can't share information about your loved one with you. You can only give them information and not receive it in return. You may need to have your loved one sign the release form at different healthcare provider offices, treatment clinics, and the hospital.

Your loved one’s healthcare team should provide them with information on their diagnosis and next steps. But you can also do your own research. Use reputable websites to gather more information and explore different treatment options. The American Cancer Society, American Society of Clinical Oncology, National Cancer Institute, and National Comprehensive Cancer Network may be helpful. Ask your loved one's provider for more suggestions. The more you know about your loved one’s condition, the better you can work with them and their team. Read the information provided to your loved one, so you are aware of what is expected.

Research can help you understand your loved one's:

• Diagnosis and medicines. Research can help you better understand what your loved one is going through. For instance, you might want to learn more about the potential side effects of treatments, such as chemotherapy, radiation, or certain medicines.
• Treatment options. You can always discuss these with their healthcare team. Ask about different tests and treatments, and what might be available to help your loved one.

Don’t be afraid to speak up about concerns or to ask questions. Your loved one will appreciate having you in their corner to make sure that they receive the best possible care.