Like dropping a stone into a pond, a cancer diagnosis sends a ripple effect throughout a family. Spouse caregivers, like the patients, can be physically and emotionally affected by the diagnosis and experience.
Spouse caregivers face unique challenges and stressors, which can lead to fatigue, sleep difficulties, irritability, and depression. Since stress may negatively impact the caregiver and the patient, experts recommend cancer care also focus on the caregiver to address stress-related symptoms for the betterment of both.
Recently retired from her job as an English teacher at the Washtenaw Community College, Edith Croake, 67, has taken on caregiving full time for her husband Dick, 70, who was diagnosed with metastatic prostate cancer in June 2007.
“Here’s your best friend, your spouse, who is becoming weaker. And at the beginning, he was in incredible pain. That is just hugely stressful,” Croake says. “You want to help, but you can’t. This is a Herculean task. There’s not a lot you control, but what you do is very important.”
One study published in the Journal of Clinical Oncology in 2005 found that 13 percent of caregivers of advanced cancer patients met the criteria for a psychiatric disorder, including major depression, panic disorder, or post-traumatic stress disorder.
“It’s really tough and intense, and I don’t expect it to be otherwise,” Croake says, adding that when a family member is diagnosed, “your life is out of control in a way that it hasn’t been before. It’s a highly stressful, anxious, and frightening situation.”
Laurel Northouse, RN, PhD, professor of nursing and co-director of the Socio-Behavior Program at the University of Michigan Comprehensive Cancer Center, says caregiver stress may be influenced by many factors, including age, gender, stage of the patient’s disease, caregiving responsibilities, and the quality of the couple’s relationship and communication style following the diagnosis.
Croake says her stress level is influenced by a variety of situations: navigating the medical system, scheduling appointments and visits, doing household chores, taking care of herself, and finding enough time in the day for new, and old, responsibilities.
“You suddenly become a secretary receiving many calls—requests for scheduling appointments, requests for scheduling visits,” she says. “There is more in that whole area of scheduling and communication with others than you are used to.”
Youngmee Kim, PhD, director of family studies at the American Cancer Society’s Behavioral Research Center in Atlanta, says caregivers can avoid becoming too overwhelmed by having open discussions about their concerns or stress level, and recognizing that it is OK to ask for and accept help. To help alleviate frustration and feeling overwhelmed, Croake hired a friend to help with chores around the house once a week and says she also looks forward to the social aspect of the visit.
Maintaining social relationships can help reduce stress, as can exercising regularly, eating a healthy diet, communicating openly with the patient, participating in a support group, and possibly seeing a counselor or medical professional.
Croake had a lot of anxiety after her husband’s diagnosis, but now manages it with medication. She maintains a healthy diet, exercises daily to help manage her back problems, and takes a journaling class at a local community college. “It’s great to get outside of the house, and it gives me time for reflection.”
Gender also plays a role in stress symptoms, says Kim. “Men usually say, ‘I’m OK; it’s not too stressful, but my back hurts.’ They tend to show their stress through their body, while women tend to talk about those things.”
That's the nature of the journey ... enjoying the moments that you have as much as you can.
And because of the interdependence between patient and spouse, each person affects the other, Northouse says. “What we’ve seen in our own research is when a caregiver is highly distressed, it has a negative effect on the well-being of the patient one year later.”
But, if the caregiver recognizes that they also need to maintain their own health and well-being—and not feel guilty about taking time for themselves—in doing so, they will actually help the patient rather than get burned out, Northouse says.
Northouse has led studies on couples dealing with cancer that involved an intervention program in which nurses provided support and education to both the patient and the caregiver through three home visits and two phone calls over about a four-month period. The intervention program was designed to target couples’ communication, hope, coping, uncertainty, and symptom management.
Croake and her husband participated in one of Northouse’s intervention studies that included prostate cancer patients and spouse caregivers. According to Northouse, the intervention had a greater effect on the caregiver than the patient, with spouses reporting higher quality of life, better communication with their partners, more effective coping, and a less negative appraisal of caregiving. Northouse reported the same results in a similar intervention study that involved women with recurrent breast cancer and their caregivers (included spouse and family caregivers).
Croake says the discussions with the intervention nurse were helpful in opening up questions she hadn’t thought to ask. “You just mention things you might not have otherwise,” Croake says. “It was good in getting us to talk about the changing situation we were facing and to remind us of some of the delights in our lives.”
Northouse emphasizes the importance of providing information to the patient and caregiver at the same time, which allows both to have their questions answered, support each other, practice healthy coping techniques, and have a positive, yet realistic, outlook on the experience they share.
For Croake, dealing with stress comes down to being open to change. “That’s the nature of the journey, letting go of some ideas [that] maybe you were going to travel and [instead] enjoying the moments that you have as much as you can.”