TAKING GOOD CARE

Co-survivorship as a partner, family member or friend often means taking on the role of caregiver. Here we explore the importance of managing stress to avoid ‘compassion fatigue.’

By Beth Leibson

“When my daughter Lindsey was going through cancer treatment, I was with her all day, every day,” says Barbara. “I only left her to shower or get something to eat when there was someone else around—her father or her cousin. Even when I went to the bathroom, I left the door open and did it very, very quickly.” Barbara didn’t take a minute for herself, not to read a book or take a walk or talk with a friend. “I just focused on being with her, taking care of her. I didn’t think about myself at all.” Barbara was simply numb, unaware of the emotions building up inside her.

One day, she unexpectedly lashed out at one of her daughter’s doctors. It was a wakeup call.

Unfortunately, Barbara is not alone. A 2007 study found that caregivers are just as likely to be treated for depression and anxiety as cancer patients. Four out of five caregivers report feeling stress and anxiety throughout the cancer experience. According to the National Cancer Institute (U.S.), caregivers struggle not only with the stress of the disease itself but also with the responsibilities of caregiving. They are often unaware of this stress. “Caregivers often walk into my office saying ‘I’m embarrassed that I’m here; I’m not the one who has cancer,’” explains Laura Mosiello, LCSW, an oncology social worker at New York-based non-profit Cancer and Careers. Mosiello provides counselling to both patients and caregivers.

“They tell me, ‘I’m exhausted, I’m upset, I’m scared,’” says Mosiello. “‘But whatever I’m feeling, it can’t be as bad as what the cancer patient is feeling.’”

The truth is that cancer attacks caregivers as much as patients. The patient has permission to delve into their difficult feelings, because they are sick. Caregivers, on the other hand, are expected— expect themselves—to tough it out.

“A lot of caregivers don’t give themselves permission to feel bad,” explains Mosiello. “They forget that they have to take care of themselves before they can tend to someone else.”

MULTITASKING AND GUILT CREATE STRESS “A lot of the stress comes from multi-tasking,” says Richard Hara, Ph.D., MSSW, oncology social worker and professor at Columbia University in New York. Caregivers typically do all the housework, manage the schedule, cook the meals, drive the patient, navigate the healthcare system, all while maintaining their own professional or vocational lives. Sometimes they work second jobs to make up for what the patient isn’t earning, Hara adds.

Guilt and fatigue are common. “Caregivers often feel that if they’re not doing something, not changing a bedpan or cooking a meal, they’re not helping,” says Mosiello. So they keep busy, maintaining a whirlwind of activity. Taking time for oneself is often viewed as selfish.

WATCH FOR THESE SIGNS OF BURNOUT Sometimes caregivers are so busy cooking and scheduling, cleaning and budgeting that they don’t notice that they’re feeling stress. There are, however, certain characteristics that can serve as a checklist. According to About Caring for Family or Friends with Cancer, which Hara co-wrote with Susannah L. Rose, MS, MSSW, there are several signs of burnout, also known as ‘compassion fatigue’: • Irritability • Sleeping difficulties (either problems getting to sleep or sleeping too much) • Loss of interest in activities • Social isolation • Recurring feelings of guilt and anxiety. Caregivers who experience one or more of these characteristics should take notice and try to figure out how to handle the stress.

Meditating, taking a daily walk, eating healthy foods and spending time with other friends and family are some simple ways to alleviate caregiver stress. There are even support groups specifically for caregivers.

Caregiving can offer unexpected rewards—many people gain new skills, a greater selfunderstanding, and a stronger relationship with the patient. But you can only experience the benefits of caregiving if you also work diligently to take care of yourself.