How Caregivers Adjust to Post-Cancer Life

When cancer treatment ends, caregivers must also find a "new normal" during the adjustment period.

When Colleen Wright’s husband received a diagnosis of throat cancer at age 46, he was in otherwise good shape, getting back into bike riding and approaching the same weight as when he played college basketball. So she tried to maintain a positive outlook. “The doctors assured us this was just a bump in the road, not the end,” she says.

She drove him to chemotherapy appointments and most of his daily radiation sessions. Their extended family lives out of state, but two teenage daughters pitched in at home. One provided comfort, reading to him and lying beside him while he rested, and the other got busy raising money for the hospital’s cancer support center.

“I had to work,” Wright says of her job as an elementary school teacher in Greensboro, N.C. “My work was my escape. I couldn’t do it all.”

When treatment ended, they expected smooth sailing. Instead, a storm hit. Accumulated effects of radiation wreaked havoc on his health, an unanticipated outcome. His mood darkened. He couldn’t swallow food or drink. He stayed in bed with the blinds closed. Wright worried about his mental state, but he refused to go to patient support services at the medical center. He was convinced his cancer had returned but didn’t want any more tests. “I had to push him to go back. I told him, ‘You can’t give up. You have a wife and three kids who need you.’”

It’s been three years since the diagnosis, and though his prognosis is good, their lives have changed dramatically. Because it’s hard for him to talk or to eat without a tube, and fluctuating blood pressure causes dizziness—a result of radiation damage—the couple no longer gets many social invitations, she says. As a family, they cut back on spontaneous activity because of his flagging energy, and he’s lost so much muscle mass that Wright now does everything around the house. The challenge for her these days is “adjusting to the new normal.” No one prepared them for this phase, and yet they are far from alone.

The Institute of Medicine and National Research Council’s 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition, spoke directly to their experiences. In it, the medical panel recommended that every cancer patient receive a survivorship care plan, a summary of information critical to the patient’s long-term care, including details on possible late and long-term effects of treatment and symptoms of such effects, as well as information on the possible effects of cancer on partner relationships, parenting and the potential future need for psychosocial support.

Unfortunately, few patients receive care plans, leaving survivors as well as caregivers to find their own way.

Just because the patient isn’t in treatment doesn’t mean anxiety goes away for the patient or the caregiver, says Allison Applebaum, a clinical psychologist at Memorial Sloan-Kettering Cancer Center in New York.

“We know that for full-time caregivers, the job intensity shifts over the trajectory of the disease, but it never ends.”

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