Taking on a New Role: Caregiving for Someone With Cancer

February 19, 2019

How can one navigate the challenging territory of caregiving for someone with cancer?

Becoming a caregiver is one of the most important—and loving—things someone can do. While each individual’s cancer experience is unique, there are some caregiving tips that apply to nearly everyone.

Talk about it. It’s important that caregivers take some time to process what’s happening. They should talk to the patient about the decisions that will need to be made quickly, including second opinions, treatments and where to be treated.

Listen and learn. During appointments, caregivers should take notes or, with the doctor’s permission, record the session. Unless the caregiver has permission from the patient to pursue a dialogue with the doctor, the patient should lead the conversation. Once the treatment plan has been determined by the medical team, the caregiver should get the plan in writing and ask questions about any points that are unclear.

Be realistic about what’s ahead. Treatment can be emotionally and physically taxing, so caregivers shouldn’t minimize what they or their loved ones are going through. Patients react differently to treatments, and chemotherapy’s toll can be cumulative. Patients might feel fine at the outset of treatment, but could feel worse before starting to feel better.

Creating a Notebook

The amount of paper generated by a cancer diagnosis can quickly become overwhelming. Below are ways caregivers can keep cancer information organized and accessible.

  • Create a summary with cancer diagnosis details, the official treatment regimen and any other regularly needed information, such as important phone numbers, names and other health issues. Be sure to list all the medications taken at home, and include other details, such as nutritional supplements the patient takes.
  • Keep a calendar for appointments.
  • Document the procedures and treatments given and planned, including possible side effects.
  • Write lists of questions for appointments. Store extra paper for taking notes.
  • Keep sections for each doctor, as well as for pathology, radiology and lab reports.
  • Organize information into simple categories, such as treatment options, side effects and clinical trials.
  • File all explanations of benefits, bills and other correspondence with the insurance company in one section. Take notes, including names and dates, of any conversations with insurance companies. Various cancer nonprofit agencies, such as the LIVESTRONG Foundation and the American Cancer Society, offer free resources for patients and caregivers. Caregivers should visit cancer.org/caregivers to find a guide that discusses how to handle specific side effects and symptoms, as well as information on nutrition for cancer patients, pain control and on choosing home care or hospice services. Downloadable worksheets that cover treatment, financial and practical issues are provided at caregiverslibrary.org/caregivers-resources/grp-checklists-forms.aspx.

Perform simple acts of kindness. Small gestures can make a big difference.

Discuss legal and financial issues. Most patients want to take care of important affairs, such as wills, living wills and medical power of attorney. Caregivers should consider reviewing financial details, such as bank accounts, tax documents, stocks, bonds, mutual funds, retirement accounts, CDs and contact information for financial advisers.

Allow patients to express feelings. Caregivers should make sure patients feel safe and comfortable expressing how they feel, and remind them that there’s no need to be upbeat all the time.

Call a family meeting. Friends and family, regardless of distance, might want to be involved in the patient’s care. Caregivers should organize a family meeting, even if it’s just by phone, to discuss who will do what. It’s important for the patient to be involved, too.