A Guide for Caregivers

If someone you love is going through cancer treatment, you have probably taken on a role you weren’t ready for. Caring for a patient is both rewarding and exhausting. This guide is for you: the person who stays by the patient’s side and sometimes forgets about yourself.

What does your help look like?

Every family and every patient is different. Caregivers usually take on tasks like these:

• Driving to the treatment center and to appointments
• Keeping the medical file, test results, and medication list
• Taking notes at appointments and asking questions
• Helping with meals and shopping
• Reminding the patient to take medicines (only as the doctor directs)
• Helping with personal care during weak periods
• Emotional support: listening and just being there

You don’t have to do all of this yourself. It is best to talk with the patient about what help they want and what help they don’t.

How to talk with the patient

• Ask, don’t guess. “What can I do to help today?” is better than assuming.
• Let them talk. Sometimes a patient just wants to be heard, not to be given solutions.
• Avoid stock phrases. Words like “Everything will be fine” may not bring comfort. It’s better to say, “I’m here.”
• Don’t forbid fear and sadness. The patient has every right to feel worried or angry.
• The decisions belong to the patient. You can share your opinion, but the patient decides about treatment together with the doctor.
• Silence can be support too. You don’t always need to have something to say.

At appointments and with the care team

• Write down your questions before the appointment.
• Take notes during the appointment, or record the audio with the doctor’s permission.
• Keep the care team’s phone number, and know which symptoms mean you should call (see the guide on warning signs).
• If the patient wishes, ask for their permission for the doctor to share treatment information with you too.

Watch for danger signs: a fever of 38 degrees Celsius or higher during chemotherapy, shortness of breath, bleeding, constant vomiting, or confusion. In these cases, don’t wait. Call the care team or go to the emergency room by calling 115 (Iran’s emergency number).

Take care of yourself too

Taking care of yourself is not selfish. If you run yourself down, it becomes harder to help the patient too.

• Set aside a little time for yourself every day. Even 15 to 30 minutes for rest, light exercise, deep breaths, or something you enjoy.
• Take sleep seriously. If you keep having trouble sleeping, talk with your own doctor.
• Eat well, and bring snacks along on long days at the hospital.
• Move your body. Even a short walk helps.
• Don’t put off your own checkups and medicines.
• Stay connected. Don’t give up friends and your own personal routines.
• Gather good information, not too much. Things you read online can be misleading. Ask your questions to the care team.

Signs you’re under too much strain

If you notice any of these in yourself, pay attention:

• Constant tiredness or getting sick often
• Trouble sleeping
• Changes in appetite or weight
• Headaches or high blood pressure
• Anxiety, sadness, or irritability that lasts more than two weeks

If this happens, see a doctor. Needing help is not a sign of weakness.

Learn to ask for help

• Say exactly what you need. “Please pick up the kids from school on Thursday” is better than “Tell me if you need anything.”
• Share the tasks. Spread out driving, shopping, cooking, child care, and contact with the doctor among the people around you.
• Choose one person to coordinate and pass news along to everyone else, so you don’t have to explain things to each person.
• Use professional help. A counselor, psychologist, social worker, or support group can help.
• Accept that some people don’t know how to help, or are afraid. That isn’t about you.

Every patient’s treatment plan is different; ask your doctor about your own situation.