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.”
Research into survivor care is a relatively new field of study; there’s even less focus on supporting caregivers, particularly during the difficult first few years after treatment ends. No one can accurately predict who is likely to need help, but typically caregivers fall into one of two broad categories, Applebaum says. Some exhibit only mild distress during the early stage of diagnosis and experience no real emotional shift throughout the disease trajectory. But those who experience clinical levels of anxiety or depression at the time of diagnosis and don’t receive attention tend to remain fragile during the survivorship phase.
The sad reality is that caregivers rarely receive the help they need, says Applebaum, who recently began a clinical service designed for caregivers at Sloan-Kettering. In general, medical professionals don’t reach out to caregivers, and most caregivers feel guilty seeking help for themselves.
In the daily activities of caregiving, they don’t have time to “process what they’re feeling,” Applebaum says. Once the patient is out of treatment, though, a caregiver may find his or her emotions are heightened, and they may experience symptoms of anxiety, depression or post-traumatic stress disorder.
One woman, for example, expressed anxiety about her husband, a cancer survivor, who was sleeping more than usual. She was worried that his fatigue was a sign that his cancer was spreading, but because the oncology team no longer saw him on a regular basis, she had no one to reassure her. Caregivers may feel uncertainty about the future or anticipate the loss of a loved one whether it’s a reality or not. Those feelings, which can arise in any stage of a serious illness, including survivorship, can be challenging for families to negotiate, Applebaum says.
It’s reasonable to be challenged at the end of treatment, and there are no quick fixes.
Caregivers of children, young or old, are vulnerable to holding on to fear. In a study of mothers of adult daughters who survived breast cancer, one mother said she couldn’t stop thinking about other patients who hadn’t survived. “I’m still frightened about it, even though my daughter’s outlook is very optimistic and very upbeat,” she told researchers.
Studies show that psychological distress may persist in caregivers for up to a year after treatment, with levels of distress being higher than in healthy people; however, other studies indicate that after two years post-diagnosis, there is no long-term psychological distress.
Sarah Reed, a licensed clinical social worker in the adult survivorship program at Dana-Farber Cancer Institute in Boston, says many caregivers are able to get through the patient’s treatment process because they have tasks.
“They’re plugging along like it’s their job to go from appointment to appointment, managing medications and problems,” she says. But when treatment ends, the psychological and emotional processing begins, and it surprises them.
Just as the shock wave hits, friends and coworkers are wondering why the caregiver can’t snap out of it. They figure the patient is out of danger and the caregiver should be celebrating. They find less social support, she says, because even wellintentioned people can’t imagine what they’re going through.
While caregivers are learning to find their footing, they may also shoulder additional stress as the rest of the family is adjusting, too. Family relationships have to right themselves after any big change. She likes the analogy of a family unit that functions like a hanging mobile. Knock one piece, and every piece dances around. In time, it settles down, but some pieces stay twisted up, and others fall back into place. Similarly, roles shift and individuals may redefine their relationships, but that doesn’t necessarily mean family dysfunction, she says. It’s just different.
“It’s reasonable to be challenged at the end of treatment, and there are no quick fixes,” Reed says. Caregivers don’t have to seek professional help unless their feelings are interfering with their ability to function, but it may be helpful to come up with a plan to do some things differently. Though many behaviors may demand attention—better sleep habits, healthier eating or making time to exercise—it’s best to focus on just one thing for one week. Don’t try to have a “life change,” she says. To transition, caregivers need to do something for themselves.
“Caregivers don’t give themselves enough permission to do that,” she says.