Cancer is big, scary and complex and no one should ever feel alone in their battle. Throughout their treatment, patients rely on care teams, support groups and their loved ones, who take on the role of cheerleaders and caregivers.
With the cancer diagnosis, caregivers – often spouses or adult children – often find themselves in uncharted territory. They want to do as much as they can to help. Throughout treatment, that desire can be channeled into many important functions. For example, by acting as a “second pair of ears” during appointments and taking notes, caregivers can help their loved ones digest complicated medical information.
But in their desire to help, well-intentioned caregivers need to recognize the difference between “supporting” their loved ones and “taking charge.”
“Some caregivers can be invasive and overtake the patient’s voice,” says Randy Nutter, a licensed clinical social worker with the St. Elizabeth Cancer Care Center. “We really need to honor the patient’s voice because they are the ones receiving treatment.”
From a clinical perspective, that means patients should direct conversations with their care team. For their part, caregivers can help the patient prepare for her appointments by brainstorming questions she would like to ask the doctor and writing them down. He can take notes during appointments to help her remember important information and organize paperwork related to her care so that it’s easily accessible.
A cancer patient should never feel that she is being forced to cede control, Nutter says. “Loved ones want to help their family members with cancer, but we don’t want to do for the patient what the patient can do for themselves. Often in family meetings we hear, ‘They won’t even let me fold the clothes.’ If a patient wants to fold the laundry and they feel up to it, let them. It might make them feel like part of the team and more normal.”
A cancer diagnosis can change the dynamics of a relationship, Nutter says, and caregivers and patients need to communicate with each other to ensure that change is a positive one. “This is an opportunity for the relationship to take on new meaning,” he says.
