Grand Rounds

Challenges and Role Changes in Caring for Adult Children With Cancer

---

  

ABSTRACT

Case Study

Here we present a case of a mother’s struggle, in her own words, about defining her new role after her adult son’s cancer diagnosis and the importance of practicing family-centered care in this scenario.

A Mother’s Role

At 27 years old, my son, Stephan, received a diagnosis of testicular embryonal carcinoma with metastatic retroperitoneal adenopathy. The standard treatment recommended by the guidelines included surgery and chemotherapy. It’s different when your child of young adult age is diagnosed with cancer. The dreaded words of “It’s cancer” were challenging for me to hear as his mother. But those limbo years when your child is not really a child any longer add to the challenge. They are old enough to be in college or to have completed college, yet they are not fully independent and perhaps not married or with a family of their own yet. Levinson (1976) labeled this 20- to 39-year-old age range as “provisional adult,” while Havighurst (1956) used the terms “young adult” or “early adulthood.” As a nurse, I use these labels myself to describe these patients. However, labels cannot change the ambiguous nature of your role as you care for your young adult child who has a cancer diagnosis.

Stephan had achieved many common milestones set by sociologists that serve as benchmarks in the transition to adulthood: He achieved a degree, left his childhood home, was financially independent, and was in a long-term relationship. His diagnosis seemed to make the world stop. His independence was replaced with agendas designed by various health-care providers: appointments that included ultrasounds, labs, meetings with specialists, surgery, chest port insertion, and chemotherapy treatments. My role in supporting his independence changed, too. I suddenly felt unscripted for the journey of this experience.

Family Strategies

A sense of ambiguity pervaded our lives. Initially, health-care providers used words such as “cancer,” “aggressive,” and “tumor,” and they weighed heavily in our hearts. We also heard words of hope, such as “cure,” and “95%.” Stephan had to make decisions that were uncommon for people of his age to make about a prosthetic device, chemotherapy agents, and length of treatment. Fundamental to all this turmoil, though, was hope. Providers spoke of hope. Early on, I decided our family unit would need to focus on this to keep hope alive in my son’s world. During the long and low days ahead and during times when exhaustion prevailed, we conscientiously reminded each other of hope and kept that thought illuminated in my son’s world.

Early on in Stephan’s journey, I realized that being present in the moment helped him to be calm, rally strength, and sometimes even develop a sense of control. I encouraged our family to be considerate of being present by disengaging from technology and just being in the moment with my son, allowing his priorities to become our priorities. This went beyond sitting with him during chemotherapy infusion; it expanded into time off for his girlfriend so she could also relax and take a break. To do this, we needed to be honest with each other without judgment. If his girlfriend needed a break one evening, I could be there to give her that relief.

It became apparent as the weeks of treatment turned into months that our ability to be present was facilitated by communication. My son’s girlfriend and I promised one another to be open and honest in our communication. As his mother, I just wanted to be by his side, caring, cooking, and assuring his comfort. Those instinctive urges are powerful yet not realistic. My son’s girlfriend and I openly discussed ways I could help: sending over a few meals, assuming responsibility for transportation to and from chemotherapy on certain days, and being the key person to keep extended family informed. I was surprised at how quickly our honest communication became a well-oiled machine of support for my son and their home life.

After the last round of chemotherapy was completed, I began to reflect on how we had made it through the 4-month journey and how I was able to support my son, honoring his independence as a young adult and honoring my role as mother of a young adult with cancer. I only had one word: courage. For lack of a better explanation, I define courage as being willing and able to show up each day, face the challenges no matter how good or bad, and see the day through to the end. It takes a healthy dose of courage to be part of the support team for a loved one facing cancer treatments. The staff who cared for my son were all excellent, supportive, and informative. But they stopped short of acknowledging the uniqueness of the parent–young adult roles. I had to find my voice and design a new role that was important to me as his mother. This was vital for me and for my son. I will never stop being his mother, nor he my son.

---

For access to the full length article, please sign in.