Abstract
I
Growing up in a family that identified with an interdependent culture, I learned, observed, and valued the importance of fulfilling one's duties and obligations to one's family, and respecting each other's roles, to maintain group harmony and cohesion. Being the youngest daughter, I was accustomed to not being actively involved in family discussions or informed of family issues, as it was my parents' responsibility for leading, providing, and deciding what is best for the family, and for me to respect and dutifully follow my parents' decisions.
As such, my parents did not communicate details about my mother's cancer, discuss her treatment options, or express their own fears and struggles to avoid burdening me with emotionally distressing information. But their approach to not sharing negative information or emotions inadvertently caused more feelings of distress, as I wondered and feared the worst, and felt that I should not burden my family or express my negative thoughts, worries, or feelings. In addition, the few times I raised concerns or asked questions to the doctors/nurses, I was also dismissed (e.g., “you don't need to worry about that,” “don't think about the worst case scenarios”) with presumably good intentions. However, the lack of communication with my family and the healthcare providers impaired my abilities to fully comprehend and to emotionally prepare and cope with my mother's cancer.
With my older brother away at college and my father, now the sole provider, working 12+ hours to maintain their small business, I assumed primary responsibility for providing my mother support and spending time with her daily, in addition to fulfilling her responsibilities (e.g., cooking dinner, grocery shopping, and cleaning the house) and my own duties as a student. Although it was never asked of me, I wanted to help care for my ill mother and felt a sense of duty to “step up” and support my family through this difficult time. For the following year, as my mother underwent surgery, chemotherapy, and radiation therapy, I maintained my academics and extracurricular activities (band practice, club meetings, volunteer work, and nursing internship), while adjusting to my new role of supporting and caring for my mother, accompanying her to medical appointments, communicating information to family, and managing household chores.
At first, these “new” tasks were relatively “easy,” in that I already knew how to cook, clean, do laundry, or spend time with my mother, and I frequently ran errands for my parents and helped with household chores before. However, these once seemingly mundane chores became much more significant and overwhelming, as they were now part of my duty and responsibility in providing for my mother and family. And it became increasingly challenging and difficult to manage these day-to-day responsibilities and provide daily support, while struggling to cope with the stress of my mother's cancer, caring for her, and my other obligations.
Furthermore, what was most distressing about my new role was not just the additional responsibilities, but also witnessing my mother's daily struggles with cancer, emotional distress (e.g., anxiety, concerns, fears, and grief), guilt and difficulties adjusting to her new role of not working or providing for her family, and physical changes and side effects from cancer and cancer treatments, which included enduring grueling pain and tremendous stress of complications from surgery that extended her hospital stay by several weeks, having a feeding tube inserted into her stomach and making major changes to her diet, as well as experiencing frequent physical pain/discomfort, weakness, weight loss, nausea, vomiting, and fatigue. But focused on my mother's health and her needs, I ignored my emotional distress and was committed to fulfilling my role and duties.
Although on the outside it appeared I was functioning fairly well, as I upheld my grades and activities, I was suffering on the inside—struggling with managing my responsibilities, fears of losing a parent, guilt of not doing enough to help, feeling incredibly alone and isolated (I could no longer relate to other teenagers' concerns about relationships or colleges), and desperately trying to remain strong and positive for my mother. I consequently became more distant and detached. Despite frequently visiting my mother in the hospital and accompanying her to medical appointments and treatments, my father and I were never offered resources, information, or support in coping with and caring for a cancer patient.
Lacking the knowledge, support, and tools to effectively process and cope with my mother's cancer, I silently struggled with feelings of helplessness, despair, fear, uncertainty, and guilt. I did not express my distress or ask for help because I did not know that I too could be affected by my mother's cancer or realize the emotional toll of caring for a cancer patient. I also did not fully understand what I was experiencing or feeling, and did not know how to process this level of stress or these complicated, distressing emotions. Moreover, I was silent because I felt ashamed that I was even struggling when I was not the one with cancer, had difficulties keeping up with my responsibilities, and could not do more to help or support my mother as she was fighting for her life.
Over the next several years, I slowly began to fully process, understand, and acknowledge my own experiences and difficulties from my mother's cancer. I realized that although it's “normal” to experience distress from cancer, my distress was exacerbated by my lack of understanding of the effects of cancer extending beyond the patient and physical health, feeling like I was only an “observer” in my mother's cancer experience and that I could not be personally impacted by her cancer, lack of effective coping strategies and skills, misconceived ideas of providing for my mother and family, and avoidance of negative emotions or experiences. And I realized that part of my suffering was from feeling guilty and ashamed of my negative experiences.
Nearly a decade later, I have found my voice, not only as a young caregiver but also as a clinician. As a doctoral trainee in a clinical psychology program, I have spent the past year working with cancer patients, survivors, and caregivers at a comprehensive cancer center to help them cope with the myriad effects of cancer, and improve their emotional distress, psychological symptoms/issues, and quality of life. Through this clinical experience, I have learned to accept my personal experience with cancer and how my own life was impacted by mother's cancer, and to let go of my past suffering.
For me, my experiences with cancer underscore the importance of including psychosocial care into standard cancer care to treat the “whole patient” and not just the cancer, and including both the patient and family as the unit of care. In addition, my experiences reflect the struggles of caring for a parent with cancer, and how children can adopt a caregiver role and be emotionally and physically overwhelmed by caregiver stress, but not receive resources as they are not the typical primary caregiver. Furthermore, my negative experiences and struggles have helped shape my clinical aspirations to provide support and care to all individuals affected by cancer, understand and validate each individual's cancer experience, appreciate their culture and personal beliefs, treat their emotional and mental health, and be particularly sensitive and help advocate for those who may not readily express their distress, including caregivers and children. And now, rather than feeling shame or guilt by what I could have done differently in the past, I am inspired by my personal experiences and focused on what I can do now to positively impact other individuals affected by cancer.