Reflections on Caregiving: Choosing Presence in a Loved One’s Cancer Journey

Author(s)Kim Johnson

A personal look at choosing to be a caregiver, the challenges faced, and the lessons learned while supporting a sister through years with cancer.

It may simply be because I cannot adequately explain why I did what I did, but for me, choosing to be a caregiver doesn’t make me special in my eyes. Having met many who have done the same thing or something similar, they all tend to share a similar opinion. When my sister was diagnosed, I was just 23 and not able to understand what the impact of having cancer in our lives would fully mean. I did not know that my sister would have to fight for almost three years to gain remission, endure a bone marrow transplant, be re-diagnosed, and then succumb to the disease after almost 11 years. At that time, I didn't even know what remission was. I just knew that I didn't want my sister to die. I especially didn't want to sit by and watch the process happen from a distance.

At some point, everybody who becomes a caregiver involved in the daily life of somebody who has cancer has a similar epiphany. They choose to take the one they love to an appointment, to learn about the diagnosis, to take care of the one who is sick, or just to be present for all the ups and downs, no matter how hard the hardest days become. In my family, I was one of six people who had to make a similar choice. Why anyone makes the choice is something that they only fully understand. One choice is neither right nor wrong; it just is. My perspective about my sister’s time with cancer is shaped by the choice that I made, and the choices that were made for me and placed me into the role of caregiver for my sister.

Every day, an estimated 35,000 people are diagnosed with cancer. Of those diagnosed, nearly all will require care from a loved one or close friends during their respective cancer journey. For varying reasons, many diagnosed will not have that caregiver in their lives to help them navigate cancer. For those who do not choose to assume the role of caregiver, there is not always, but there can be, a lack of understanding of the disease and what is happening to the one who has cancer. I relate to this on a personal level because my family did not make the same choices that I made when my sister was battling cancer. While my sister and I went through cancer together, our experiences were vastly different from one another.

Cancer ravaged my sister for years and altered her life before eventually taking her life. While I was not the one diagnosed with cancer, cancer also altered and forever changed my life. For her first battle, I pushed pause on my life and became a full-time caregiver and fully immersed myself in the world of cancer. I lived with her when she was in the hospital, with the only exception being when she was placed in a rehabilitation facility due to complications from treatments. I attended nearly every appointment, I researched as much as I could, and I advocated as hard as I could for her as her power of attorney. I did anything and everything that I possibly could to make my sister’s cancer journey as easy as possible to try to ensure, to the best of my ability, that she survived cancer.

Caregivers provide support to those battling cancer, and having lived through it both as a family member and medical provider, I fully understand the necessity of caregivers within a care team. However, as essential as I believe them to be, I do not suggest doing so in the way that I did for my sister. In nearly every way, I hope that it looks or is different. I was young and did not set appropriate boundaries. Although many on her care team advised me of the importance of self-care, I did not even know what self-care meant. I did not understand the necessity of practicing self-care in order to be the best version of myself so that I could show up for my sister in the best way.

I hope that your journey as a caregiver was something that you chose and not a role you were forced to assume, that you had adequate support to be a caregiver so that you did not or do not come to experience burnout. I have learned so much from my time as a caregiver, and it has shaped me in innumerable ways, but by no means would I suggest that what I did, or even how I did it, be used as the roadmap for caregiving. If you choose or happen to find yourself serving in the role of caregiver, remember that doing so does not mean that you, your life, or your needs do not matter, because they absolutely still do. And lastly, I know that being a caregiver can be an often-thankless job, so in case nobody has told you lately, thank you for all you do, and you are doing a great job.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.