A New Role

A guide for navigating the challenging territory of caretaking.

Being a caregiver is one of the most important—and loving—things you can do for someone. And, since you’re reading this, you’re likely one of the millions of Americans who are in this exact role. Navigating this new terrain isn’t without its challenges and, while everyone’s cancer journey is unique, there are some caregiving tips that universally apply.

Help with research. A good use of this time is to learn about the disease, the range of potential treatment options, and to begin developing a treatment plan. For caregivers, it’s worth it to invest a little time helping the patient with their research, and getting up to speed on the vocabulary. This will help break down the social isolation that patients can feel, just by widening the pool of people they can talk to about the absurd minutia of the disease. It won’t all be comforting information, but understanding can make it easier to make timely decisions later. The doctor should be able to help guide further education, but doctors have significant schedule constraints and have limited time to spend with patients. To make the most of this time, caregivers can help hone the questions and if needed, request for additional appointments to review the pros and cons of different treatment options. For really big decisions, make sure you talk with the patient a few days beforehand in case questions come up that require a little more research.

Listen and learn. In the doctor's office, a patient is likely to forget a significant portion of what the doctor says. This makes sense considering the fact that cancer is an emotional topic and a lot of life-altering information is presented. This is where you come in. Listen carefully, take notes, or, with the doctor's OK, record the session to help the patient regain the information when you’re home and beginning to put together an action plan. A caregiver no-no is pirating the conversation with the doctor. Follow the patient’s lead: If you have permission to pursue a dialogue with the doctor, fine. Otherwise, let them make the call. Once the treatment plan has been determined by the medical team, get the plan in writing.

Be realistic about what's ahead. Surgery, chemotherapy, and radiation are very taxing so you never want to minimize what your loved one is going through or may soon experience. Keep in mind that some people experience extreme nausea and fatigue during chemotherapy and radiation, and others will lose their hair. In general, know that the toll chemo takes is cumulative. The patient may feel fine at the outset of treatment but will likely feel worse before they start feeling better.

Watch for hidden symptoms. Once treatment has started, the patient may suffer symptoms or side effects from the cancer or the treatment. However, many symptoms and side effects are silently endured by cancer patients. Here’s another entry point for caregivers who may be more likely to notice if the patient is having difficulty with a task or seems especially uncomfortable. Counselors can help ameliorate stress, depression, and other psychological symptoms. Physical and occupational therapy can mitigate pain and infirmity, while dietitians, acupuncturists, and massage therapists can make treatment easier. Social workers can help arrange other needed support services.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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