Few people have the training or experience for the role of caregiver. It’s common to feel overwhelmed and unprepared, but keep in mind that you already possess skills for giving encouragement, offering comfort, providing companionship and so much more. Accept help from friends, family members and your community. Together, you can make a significant difference for your loved one.
Get the “OK” to receive medical information. Be sure you are authorized to communicate with the health care team, access medical information, renew prescriptions and more. If you are unsure about the forms you may need to sign, ask a member of the health care team.
Attend medical appointments.
Going to appointments with your loved one will help you learn about the type of cancer, treatment options and other aspects of care. The nurse or patient navigator can answer questions, offer resources, relay information to the care team and indicate which appointments will be most beneficial to attend. Be sure to bring your own calendar with you so you can keep track of future appointments or tests. Ask for copies of test results, surgical procedures, treatments received, etc. The navigator can also help if specific resources are needed, such as free transportation or coverage for out-of-pocket expenses or for prescription medications, and even coordinate childcare in some cases.
Meet the health care team. Introduce yourself to the doctors, nurse navigator, pharmacist and other people on the team. Ask questions to help you learn about your loved one’s diagnosis and treatments, especially side effects of treatments and what to expect. Determine the best ways and times to contact them. Building strong relationships will make it easier to communicate openly and honestly with them.
Give and track medication.
Your loved one must take the right dose of the right medication at the right time for the treatment to be most effective. Create a chart or set reminders. If it is a financial hardship to pay for these drugs, let your navigator know that, too.
Shop for and prepare meals.
Consider your loved one’s special diet needs and preferences. Thoroughly wash all fruits and vegetables. Accept friends’ offers to bring over meals, and provide detailed information about the nutrition guidelines your loved one must follow, as well as any dietary restrictions. Meals that can be frozen to serve later are ideal. Be watchful of your own diet to avoid high-fat, high-calorie comfort foods. Eat a smart, well-balanced diet. Discourage friends and family from bringing over desserts. Today it is more common to gain weight than lose weight while receiving cancer treatments.
Help manage side effects.
Learn which side effects to watch for, when they will likely occur and what to do if they do. Minimizing and managing them may improve your loved one’s outcome and will improve his or her quality of life. Check with the doctor before using over-the-counter medications. Avoid remedies others suggest; rely on your medical team for advice on the right methods to use. Be sure the doctor approves any complementary therapies because even herbs and vitamins may interfere with treatment. Report side effects as soon as they occur so they can be managed right away. Your prompt attention could prevent a potentially life-threatening situation, as some are dangerous if left untreated.
Manage the calendar. Maintain a paper calendar or one on your phone to keep track of doctor’s appointments, lab work and other tests and procedures.
Set up a system to manage bills, insurance papers, research, medical forms, etc. Use a large wall calendar or an electronic calendar to track appointments. Discuss billing issues with the financial counselor (or case manager) who works with the medical team. It’s important to know about out-of-pocket expenses in advance.
Update family and friends.
Serve as “Information Central.” You and your loved one can get exhausted as family and friends call with questions about what the doctor said, what the treatment plan is, how the patient is feeling and how they can help. Create an email group so you can send one email with all of the information your loved one is comfortable sharing. This will dramatically reduce phone calls and individual emails as well as ensure that everyone is getting the same information at the same time. Siblings are all informed at once rather than one being called first, for example.
Although it seems odd, exercise can help reduce fatigue and improve mood during treatment and beyond. Suggest going for a walk or a car ride. Even a short walk from the car to a bench or your destination can help.
Be a good listener. Facing cancer can be overwhelming, and sometimes your loved one may just need someone to talk to. Simply listening is more helpful than you may realize.
Don’t “over-help.” Talk with your loved one about the type of help that is most needed. You may have the urge to do everything, but it is important to let your loved one maintain independence. Also, the level of care needed often changes throughout treatment, so pace yourself.
Find a support group for your loved one – and yourself.
Ask the nurse or patient navigator for a referral to a cancer support group and a cancer caregivers’ support group. You can also use the resources on this site.
Take care of yourself.
You will be more effective if you maintain your own health. Eat right, exercise, keep medical appointments and give yourself time off. Take advantage of family and friends offering help. Create a list of things that can be delegated to others. People want to help and most are sincere. Ask for healthy meals to be prepared that can go in the freezer for when they are needed.