By Damaris Christensen
Dancing With Grace
Caregivers take one step at a time
By Damaris Christensen
Illustrations by Laszlo Kubinyi
Professional dancers make it look easy. But the mishaps and even injuries on the show Dancing With the Stars have revealed that even the most graceful dance represents significant effort and constant attention to the moment. So it is with the delicate dances among people with cancer, their loved ones, and those around them. Caregivers find themselves taking one step at a time, following the lead of the person with cancer while listening for the sometimes complicated rhythm suggested by medical personnel and the disease itself. It isn’t an easy role, many caregivers say, but it can bring a great deal of satisfaction.
Being a caregiver “is the most difficult thing I’ve ever had to do, but also the most rewarding thing I’ve had to do,” says Lisa Molina of Austin, Texas, whose son, Thomas, now 13, was diagnosed with acute lymphoblastic leukemia at 3 years old and relapsed in 2007. Sometimes, according to Molina, it’s hard to cope with day-to-day anxieties about the unknown, with the knowledge that so much is not in her control, and with the seemingly unending logistics of cancer—medications, appointments, insurance records and more. And then she experiences the need “to be nurturing and sensitive to my children, family and friends, in spite of how exhausted and overwhelmed I may feel on a given day.” She copes through prayer, meditation, therapy, humor and good nutrition, and by maintaining family traditions (even in the hospital) and learning all she can about her son’s illness and treatment.
Molina says that living with her son’s cancer has made her aware that “basically the ordinary becomes extraordinary. The things that used to bother me seem so insignificant now. … Life and my family are so precious to me. And people, even strangers, have been so good to me. That really gives me hope.”
But caregiving experiences aren’t always filled with lots of support. Geoff Grant, 43, of Methuen, Mass., spent much of his 20s caring for his mother after a stroke and two cancers, and then in his early 30s became a caregiver for his wife after her diagnosis with mesothelioma. As primary caregivers—responsible for bathing, changing and feeding their mother, as well as taking her to appointments—he and his brother felt overwhelmed and isolated. And it seemed to Grant that everyone he encountered—the hospitals, nursing homes, doctors, insurance companies—“had their hand out looking for money.” He felt angry, trapped and guilty, he says. But connecting with other caregivers through the Wellness Community, a nonprofit support organization, helped him learn to not view himself as a victim of circumstance.
“You have to seek out self-care and maintain your identity,” Grant says. “My wife and I now speak to families and patients at the hospital where she was cared for. I tell people to have other activities in your life besides caregiving; be aware of how you are feeling; seek out a support system”—whether it’s friends, family, seminars or workshops—“and widen your experiences, because the very nature of caregiving can cause you to be so focused on someone else.”