What You Need to Know as a Cancer Caregiver

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Organizing medical treatment and paperwork

It helps to be organized. You’ll be getting a lot of information – new information that can be hard to understand – and it helps to keep it all in one place. Take notes. A notebook or a file box might work well for you. Some people rely on their electronic organizers, which is good as long as it’s secure and there are backup copies. Whatever you use, bring it to every office visit and every treatment.

Learn as much as you can about the illness and the treatment plan. This makes it easier to talk to the doctor and the patient. It also helps you better understand what to expect over time.

How do I manage the medicines?

Keep a list of all medicines the patient is taking, including prescription and over-the-counter medicines, and any vitamins, herbs, or other supplements. This list should include the:

  • Name(s) of the drug (both the brand and generic names if possible)
  • Dose (number of milligrams [mg] per pill; this is usually on the bottle)
  • Schedule (which days of the week and what times of the day it’s taken)
  • Reason for taking it
  • Doctor who prescribed it (if the patient sees more than one doctor, one may not know what the other has prescribed)

Don’t forget the medicines the patient takes every now and then or “as needed” – for instance, drugs for pain, fever, itching, or sleep.

Keep this list current and take it to each doctor’s appointment. Have the doctor’s office make a copy and be sure to update it each time a medicine gets added, taken away, or if a dose changes. Share the new schedule with each doctor on the next visit. Also have it handy if you call the doctor about a problem. You can call us for a chart to help you list medicines or find one online at www.cancer.org and enter “medicine list” (with the quotes) in the search bar.

Some caregivers make lists or spreadsheets and post copies on the refrigerator. That way the list is handy when someone comes in to help. A second copy in the patient’s wallet might be useful, too.

As the patient’s condition changes, ask about the need to continue medicines. For example, if he or she loses weight, some blood pressure medicines may not be needed. Or if treatment for cancer is stopped, there may be other drugs that can be stopped as well. Stopping medicines when they’re no longer needed can lower expenses and reduce the chance of drug interactions and side effects. And it’s one less medicine to keep up with.

Should I keep medical expense records?

You may also need to help keep up with doctor bills, drugstore receipts, and insurance statements. Or the patient may ask another trusted family member to be the one to track bills and insurance payments. Getting someone else to do this can free up time for other things, which can help you as a caregiver. Still, you may need to take part in tracking the actual doctor visit dates, treatments, and prescription refills.

It’s a good idea to keep all medical bills, insurance EOBs (Explanation of Benefits), prescription drug receipts, and so on all in one place. For more on dealing with insurance, see our document called Health Insurance and Financial Assistance for the Cancer Patient.

Last Medical Review: 03/05/2014
Last Revised: 04/28/2014