Managing family dynamics during cancer can be complicated.
Thomas Sager’s wife was diagnosed with pancreatic cancer in October 2010, and he, along with her adult son and daughter, braced himself for a nine- to 12-month ordeal. The day after Thanksgiving, when her children had packed up to go back to their respective homes several states away, his wife had a “breakdown.”
“She could not be consoled, and she blamed me,” Sager recalls. “She was convinced she would not live to see her children again,” though they had plans to spend Christmas together. She was so agitated that her sister took her to the hospital, and the rest of the family advised Sager to stay away since his presence seemed to set her off. “It was agonizing and hurtful,” he says. It lasted almost 10 days.
Families and cancer are complicated. The unique dynamics that define each family are in precarious balance during good times and easily upset during crisis. In his book Cancer as a Turning Point, Lawrence LeShan, PhD, writes: “The stress of cancer may in one family bring about much fuller and deeper communication between members and in another family have the opposite effect.”
The challenge for caregivers, then, is in trying to determine early on which type of family they have.
Healthcare professionals have known for ages that the well-being of patients and caregivers is intertwined, “a synergistic effect,” says James Zabora, ScD, dean of the National Catholic School of Social Service and Professor of Social Work at The Catholic University of America. For that reason, Zabora and a team of psychosociologist researchers have been training and testing caregivers for years to discern who needs help coping and how to deliver that help.
What they found was that teaching family caregivers how to brainstorm constructively gives them confidence to make thoughtful decisions, which in turn reduces their stress.
Families considered high-functioning, or “engaged,” as Zabora calls it, before the cancer event respond better to problem-solving training than maladjusted or “disengaged” families. The challenge is to identify which families need additional or remedial training and how frequently, Zabora says.
A problem-solving therapy used to empower caregivers and reduce stress is referred to as COPE. The letters in the acronym stand for: “Creativity,” which refers to using different perspectives to view a problem; “Optimism,” having a positive but realistic attitude toward the problem-solving process; “Planning,” setting goals and defining steps to reach them; and “Expert information,” which means knowing when to seek professional help and when to rely on what you know or can readily find out. According to the National Cancer Institute, the COPE program “has been shown to decrease stress in some caregivers.”
Medicine has become patient-centered, but when doctors talk about treating the whole patient, that has to include the whole family, Zabora says. “The next logical step would be to screen family caregivers,” he adds. “We showed a long time ago that it only takes a few minutes to determine who needs psychosocial education, and you want to have that information from day one.”
I never missed a day. I knew from the day of diagnosis, that this was not a sprint. It was going to be a marathon, and I had to take care of myself.
When her birth mother was diagnosed with leukemia, Susan Abernethy lived hours away but wanted to help. She faced conflicting pressures at home. “I feel so wretched that I can’t go and do things for her—but have to pretend she doesn’t exist because my [adoptive] mother gets so insane about it.”
The 92-year-old mother who had raised Abernethy became “the source of most of my sadness,” she says. However, she went to see her dying birth mother and stayed long enough to arrange transportation for chemotherapy appointments, cleaned clutter so that a home health aide would agree to visit and enlisted help from cousins who lived in the area but had not taken initiative to help their reclusive aunt. Abernethy also agreed to take home her birth mother’s cats, which became a source of much anxiety for her adoptive mother.
Zabora refers to this kind of caregiving effort as “strength-based,” finding out what each person does well and letting that person take charge of that. It’s very useful within families, he says. Not everyone is available to pick up prescriptions or drive to appointments. Some lack the aptitude to pay bills or make meals. But everyone has something to offer.
When Lisa Thalhimer was dealing with breast cancer, she had a crew of caregivers, led by her husband, Bobby, their two adult children and spouses, siblings, in-laws and a cadre of close friends. Having a stable of supporters is a blessing, but as primary caregiver, Bobby Thalhimer assumed the job of “managing the team.”
Early on, everyone accepted the ground rule that Lisa Thalhimer would “call her own shots,” he says. An array of options during cancer treatment means everyone has an opinion, but “Lisa was the decider,” he adds.
Ruth Bolletino, PhD, a New York City psychotherapist who counsels adults with cancer and often their spouses, says one of the hardest things about having cancer is a feeling of loss of control of your body and your life. “It’s a terrific help if family members can encourage the patient to make decisions and take control.”
During Lisa Thalhimer’s illness, both daughter and daughter-in-law were pregnant. Emotions ran high, yet “everyone managed to bring their focus to Lisa,” Bobby Thalhimer says. Friends wanted to visit at all hours, but to ensure time alone with his wife, doors were open to visitors starting at 8 a.m. but only to immediate family after 3 p.m. when he came home from work. For his own well-being, he worked out every day on a treadmill or outside. “I never missed a day. I knew from the day of diagnosis, that this was not a sprint. It was going to be a marathon, and I had to take care of myself.”
Another precaution, which experts embrace, was to connect his children with a social worker in case they ever needed one. “We knew it would be a tough fight,” Thalhimer says. He signed up with an “impact volunteer” at the VCU Massey Cancer Center in Richmond, Va., where his wife was being treated. The volunteer, a former nurse, called him once a week.
“I never really needed her, but it was part of my layering concept,” he says, explaining that he surrounded himself with layers of support that included colleagues at work, friends and family. It also satisfied his need to try to plan for the unexpected, he says. Throughout his wife’s illness, he wrote about the highs and lows on his blog, hosted by the local newspaper, which generated a new layer of supporters who never even met the family.
The idea of shoring up your foundation to survive the quake is exactly the advice professionals preach to caregivers. Bolletino suggests caregivers take care of their own physical and emotional health and well-being by eating healthy, sleeping regularly, getting exercise, making time for activities they enjoy and finding outside sources of emotional support.
Bolletino’s best advice? “Stay open to possibilities,” she says. “No one knows what the future will bring.”