I'm Not a Caregiver, Am I?

Russel and Linda DeCamp never considered themselves caregivers in the formal sense, even though Russel took care of Linda through two diagnoses of breast cancer, and Linda cared for Russel during his bout with colon cancer in 2007. “I never thought of it in that term, just more in the spousal role,” says Russel. “In both cases, [it’s] just being supportive of that other person and just totally committed to that other person and that other person’s well-being.”

Much like the DeCamps, most people who take care of a cancer patient don’t view themselves as caregivers. A recent survey, commissioned by The Wellness Community, found that of 1,002 Americans, few respondents identified themselves as “cancer caregivers.” Although more than 50 percent of people surveyed said they had participated in at least one activity related to caregiving, such as listening and offering comfort, running errands, or driving the patient to doctor appointments, only 20 percent of respondents considered themselves “cancer caregivers.”

Kim Thiboldeaux, president and CEO of The Wellness Community, says they expected some of what the data represented, but they did not expect such dramatic results.

“It’s amazing,” says Thiboldeaux. “Folks are going about this work every day. They’re spending hours of time and energy, and giving so much care, but they don’t even identify themselves in this role.”

The results helped to validate the creation of a new program by The Wellness Community called the CARE (Cancer Advocate Resources and Education) campaign, which is a series of workshops launching in September for breast cancer patients and their caregivers. Plans to open the campaign to caregivers of patients with any cancer will follow this initial phase. And because many cancer caregivers don’t identify themselves as such, The Wellness Community plans to promote the program through patients and emphasize the workshops as a joint activity.

Having patients help caregivers define themselves in this role may be the key. Even though Linda DeCamp drove her friends with breast cancer to their appointments and treatments, she didn’t define helping them as caregiving. And although she describes her husband as a caregiver because he was there for her 24/7, she still finds it difficult to define exactly what a caregiver is.

“I don’t know what that defining thing is. There are people that don’t have someone living with them, and they depend on a friend or a family member who comes in periodically to help them out when they need it most. So they are also caregivers. I think that probably the person who’s going through the illness would be the person who would say this person is my caregiver.”

A caregiver, according to The Wellness Community, is anyone who provides physical, emotional, financial, spiritual, or logistical support to a person with cancer, and can be a family member, friend, neighbor, long-distance relative, nurse, or spouse. Yet when respondents to The Wellness Community survey were asked to identify who they thought were caregivers, most people identified a spouse or someone in a professional role, such as a nurse. Furthermore, 99 percent of the people surveyed expect the patient to need assistance at least once a week. Because they might be defining caregivers in a traditional sense or by time limits, many people might not recognize themselves as caregivers despite performing caregiving activities or they place most of the focus on the patient.

“I think it’s the idea that: ‘My loved one has cancer and I’m going to do everything I can to help them get through this experience.’ so they don’t think of themselves in any kind of formal way,” Thiboldeaux says.

James Huysman, PsyD, LCSW, executive director and co-founder of the Leeza Gibbons Memory Foundation, an organization that encourages caregivers to those with chronic illnesses find education and empowerment, says the self-identification issue has to be the greatest challenge of all.

Not identifying yourself as a cancer caregiver can have health and other consequences, such as mental distress, burn out, neglecting routine health screenings and check-ups, and not reaching out for support. Caregivers need to take care of themselves by first identifying themselves as caregivers and by recognizing that caregiving is its own special condition, Huysman says. (Read more about why caregivers should avoid neglecting their own needs in CURE's Taking Care of Yourself).

“Once we can get self-identification out of the picture,” Huysman says, “we could actually really do something here.”

Having patients help caregivers define themselves in this role may be the key.