Renegotiating Family Dynamics After Cancer

When Jasan Zimmerman received a thyroid cancer diagnosis at age 21, he and his parents, Jim and Carolyn, knew what to expect. After all, he had already had two cancer diagnoses: neuroblastoma at 6 months and thyroid cancer at age 15.

However, from the time he was a teenager, things went a little differently. When doctors walked in to discuss his medical information with the family, Carolyn says, “They wanted to talk to me, the parent. But I directed them to Jasan and said, ‘He’s the patient. I’m the mother.’”

Nearly 70,000 adolescents and young adults (AYAs) receive a cancer diagnosis every year. The National Cancer Institute defines the AYA population as those whose ages are between 15 and 39. With about 23 percent of AYA patients under age 25, many of the developmental changes associated with emerging adulthood—taking on greater personal responsibility, establishing independence from parents and family, garnering values and identity, forming strong peer relationships, training for and transitioning into the workforce—are often disrupted by a cancer diagnosis. Cancer treatment can have a negative impact on the patient’s social networking, self-esteem and, often, fertility. And when AYAs turn to mom and dad to help them through treatment, the caregiving relationship can quickly become complicated.

For many AYAs, maintaining a sense of independence throughout the cancer experience is important, says Julie Larson, LCSW, a private practice therapist who specializes in young adult issues. “It can be very difficult for a 20- or 30-year-old to have to move home,” she says. AYAs often have to rely on their parents for an array of needs, such as financial support, physical assistance and transportation to medical appointments. However, she adds, encouraging their independence “gives a sense of control and strength.”

Jaime Seltzer, 59, of Hartford, Conn., cared for her daughter Amanda when she received a diagnosis of both Hodgkin and non-Hodgkin lymphoma in 2009 at age 23 and moved home with her parents. She says her job as caregiver changed every week—sometimes she was a cheerleader, telling her daughter she was doing a good job when she focused on exercise and making her feel like she was in charge of something when most things felt beyond her control. Part of that was making sure her daughter was involved in the decision-making process.

“At 23 years old, she was her own person,” Seltzer says. “She had a right to know what was going on, so we never held anything from her or told her stories to cover up for what was.” But Seltzer also had to adjust how she related to her daughter.

“I was used to dealing with her as a college graduate who lived on her own and [had traveled] abroad,” she says. “And, all of a sudden, she was acting like a 6-yearold; she would have temper tantrums and really felt like she couldn’t make a decision. I had to walk her through trying to be more confident in herself.”

Young adults might also want to go back to normal as soon as possible. A recent study in the journal Cancer stated that, in order to maintain their quality of life, AYA cancer patients need to participate in typical ageappropriate activities as often as possible and develop strong peer relationships. Seltzer’s daughter connected with another young woman through frequent emails and texts. The Zimmermans always made sure their son did age-appropriate activities while he was growing up. “We never said, ‘No, you can’t do that,’” Carolyn explains.

While helping to support their child’s autonomy, parents still need to work with their child as part of a cohesive family unit. Seltzer firmly believes that it takes a whole community to make someone healthy, so she set out to make the world around her daughter more supportive. While she and her husband continued to work, they attended their daughter’s appointments, and Seltzer arranged for her sister to act as treatment coordinator to make sure that someone was always with her daughter while she was getting chemotherapy.

“We thought it was best that I didn’t go to every treatment with her because I was with her when she came home from the treatment and during the night,” Seltzer says. “We felt we were going to kill each other if we were doing everything together.” Seltzer adds that her daughter spent at least one day a week having time with just her dad.

She goes on to say that she and her daughter had a “Eureka!” moment in their relationship. They got into an argument, and her daughter said, “You don’t know what it feels like to be in this body. You don’t know what it feels like to be 23 and have cancer.” Seltzer responded, “You’re right; I don’t know. But you don’t know what it’s like to be your mother in this body, watching your 23-year-old daughter go through cancer treatment.” From then on, she says, everything was different because her daughter realized she wasn’t the only one impacted by cancer—everyone around her was also impacted.

Jasan Zimmerman says that having his parents work as a team supporting him was especially helpful: “I appreciated mom and dad asking all the questions, so I could focus on getting better. Having them as advocates was huge.” His mother adds that a good caregiver gets all the information to make decisions, especially when the child is young, but when the child is older, decisions should be made as a family.

Larson says that maintaining the balance of relationships can help children cope with their unexpected diagnoses, but parents need to respect how their child copes in particular. “All the ways you’ve supported your child before haven’t mysteriously changed with this diagnosis,” she says. “Trust what you know about your children.” And be willing to defer to them a little bit—people cope in different ways, so understanding each other’s coping styles is important.

Self-care can be as important for the caregiver as it is for the patient. “Young adults are savvy enough to know that mom and dad are stressed, too,” Larson says.

Seltzer admits she should have taken better care of herself through diet, exercise, social interaction and stress reduction. “If you’re not healthy, you can’t take care of a child who is sick.”

Carolyn Zimmerman says practicing self-care is not only refreshing, but also helps the caregiver to realize “it’s not such a long haul before you can see the light at the end of the tunnel.”

Larson suggests that parent-caregivers express their feelings in honest, controlled ways, because being transparent about how they’re coping can model healthy behaviors.

Jim Zimmerman says when his son received his first cancer diagnosis more than 30 years ago, it was difficult not knowing where to go for answers or even who to ask. Carolyn Zimmerman adds that they didn’t know anyone at the time who had a child with cancer. Thankfully, she says, there are a lot more support opportunities now (for caregivers and AYAs), so she pays it forward by listening and offering resources to other caregivers through phone sessions. Seltzer has reached out to another parent in the community who also had a child dealing with cancer, providing much needed support and friendship.