Family members share challenges when caring for parents going through cancer treatment.
Eight months after her father’s cancer treatment ended, Emily Foust still gets teary talking about his experience. “My response was terror and powerlessness,” she recalls. At 40 and the oldest of three sisters, Foust didn’t want her visible distress to upset her father, who was undergoing aggressive treatment for tongue and tonsil cancer, so she rarely visited, even though they live in the same city. “I love cooking and I express my tender feelings for people through food,” she says. “Since he didn’t feel like eating, it was exasperating.”
Foust’s middle sister is the nurturer in the family, she says, a nurse midwife who works on call at all hours, has three children at home and more demands on her time than any of the siblings. But as she was better informed and better trained to deal with their dad’s illness and the side effects of treatment, the family turned to her. There was never a formal discussion about it.
This family is typical. Siblings who share care for a parent rarely sort out their roles in any formal discussion. It just happens. The sibling who takes on the position of principal caregiver is usually the one who lives closest to the ailing parent, and who has the time, the competence or any combination of traits. Yet it’s almost always a daughter or maybe a daughterin- law. This can be a result of a cultural expectation that “women’s work” includes bathing, hygiene, taking care of the household, meals and medication. Sons, however, might assist with such tasks as financial management, yard work and maintenance.
In one study, in which women were asked years later to reflect on why they were tapped to be the primary caregiver for a parent, most describe an unconscious decision process. In his book Caregiving Daughters: Accepting the Role of Caregiver for Elderly Parents, Rick Briggs explains: “There was simply an assumption by all regarding the matter. The selected daughter may have made the same assumption, or she may have simply bowed to the wishes of the others.”
Less is understood about the level of contribution from sons. In a small study of eight brother and sister pairs, the men interviewed were just as likely to be an equal ongoing caregiver, a “co-provider,” or a “helper” ready to tackle a time-limited task. One theory is that the “helper” brothers didn’t usually step up and take charge for the same reason that some husbands wait to be told what to do and when to do it. But in all cases, the men deferred to their sisters to plan and organize their parents’ care. The women said they preferred to organize care, fearing something would be overlooked if they didn’t.
Compared with the volumes written about siblings who care for aging parents, relatively little specifically describes the experiences of siblings who care for a parent living with cancer. Still, some parallels are inevitable. For example, researchers at Texas A&M University in College Station, Texas, found that most siblings who shared care for an elderly parent rarely discussed how the responsibilities would be divided, a finding that the researchers called “disheartening.”
There was simply an assumption by all regarding the matter. The selected daughter may have made the same assumption, or she may have simply bowed to the wishes of the others.
“Clearly, there is resistance in family systems to open discussions of eldercare,” they wrote.
Principal caregivers who said their siblings didn’t share the work either made excuses for them or expressed anger or irritation over their lack of involvement. Most often, they constructed a story to explain why those siblings weren’t on board, a practice that doesn’t bode well for the lone caregiver in the long run, the researchers noted.
Siblings carry their shared past with them, says Marlene Lockey, senior social work counselor in critical care at the MD Anderson Cancer Center in Houston. As a result, one sibling may be expected “to do the heavy lifting,” she says, but every adult sibling should shoulder some of the load. If one doesn’t know how to help and another is unwilling to help, the heavylifter should enlist their support anyway. Perhaps the reluctant one can run an errand, handle the insurance, deliver meals or mow the lawn. “I look at caregiving like a patchwork quilt,” with lots of people involved, Lockey says. Don’t overlook a nephew who is between jobs or a college-bound niece who could stay with Grandma during the summer.
Caring for parents who have cancer is, in some ways, easier to coordinate than caring for an aging parent in that siblings view the time commitment differently. During the finite period of surgery and treatment, siblings can rearrange their calendars. If it’s an end-of-life situation, the siblings want to be around, Lockey says.
An oncology team needs to know who is the primary contact and caregiver after the patient goes home. Parents can inadvertently stir up sibling rivalries by choosing one child for this role without discussing it with the rest of the family. Sometimes, older parents insist they can’t ask any of their children to help out because they are all too busy with jobs and families, Lockey says. In pre-discharge meetings with the entire family in attendance, the parent learns otherwise. Usually after the medical team describes what has to be done in terms of care, one sibling agrees to do this, and another agrees to do something else. “Fortunately, more families than you realize work it out well,” Lockey says.
Challenging family dynamics can add stress for patients and caregivers, says Alison Snow, coordinator of social work services at Beth Israel Comprehensive Cancer Center-East Campus in New York. “Our main goal is to work collaboratively with them on treatment decisions,” she says. “When the medical team, patient and family meet together to discuss current health status, treatment options and goals of care, it can help everyone to be on the same page and to learn what the patient’s preference is.”
At highly emotional times, such as facing a parent’s mortality, even the most mature individuals can become irrational, says journalist and author Francine Russo in a podcast interview with The Wall Street Journal. If interactions with siblings are consistently intense, it’s probably a sign that old rivalries or long-buried feelings are clouding the current issues. Russo’s advice: Call in a mediator, such as a clergy member or a counselor, and invite the family. Stick to the immediate issues and lay out who will do what to care for Mom or Dad.
When the medical team, patient and family meet together to discuss current health status, treatment options and goals of care, it can help everyone to be on the same page and to learn what the patient’s preference is.
It’s a good idea to continue family meetings as the parent moves through the cancer process or whenever family circumstances change. Include the parent if he or she is healthy enough. (Don’t discuss feelings or matters that are inappropriate for the ill person to hear. Save that discussion for another meeting.) Use video conferencing to include siblings who are too far away to attend, or even provide updates via email. Make sure everyone understands what the medical situation is. Remember, Mom may be understating her condition to children living far away to spare them worry.
It’s best to decide as a group how decisions will be made and how information will be communicated. Making an effort to create a positive caregiving experience will pay off for everyone involved. Learning how to weather a crisis by cooperating with siblings will fortify family ties and give a new perspective on the siblings as competent adults.
Foust’s father is improving, and she says she feels guilty now for lacking the emotional strength to visit when he was physically debilitated. Like many adult children, she was lost in new territory, unprepared for her own reaction to the threat of losing a parent, unsure of what she could do and willing to let her sister take the lead. In hindsight, she says, “I wish we had asked him upfront what kind of care he wanted instead of us projecting what we thought was good care.”