Navigating Relationships and Boundaries as a Cancer Caregiver

October 26, 2020
Kim Johnson
Kim Johnson

Kim is a nursing student who is hoping to find her place amongst the phenomenal oncology nurses and doctors who cared for her sister. She loves reading, volunteering and enjoying the outdoors of Colorado.

Caregiving is a journey unto itself, and one that brings in its own nuances and challenges when caring for a family member with cancer regardless of your relationship to them.

When my sister was diagnosed, I made choices that differed from my siblings. I assumed the role of caregiver, but even before I made that choice, I chose to set aside our pasts due to cancer. She was twenty-seven at diagnoses, and I was twenty-three, and we had a lot of history between us. Although we shared a room for most of our youth, growing up, we were not very close. I was far closer to my twin brother and my childhood friends than I was to her.

We had very little in common and were opposites in nearly every way. Through our teens, we struggled to get along, and my sister behaved in numerous ways that were self-serving and hurtful to both myself and my siblings. She was, at times, violent and could be self-centered. In part, these are some of the reasons my siblings chose not to be there when she was diagnosed.

I fell somewhere in the middle. I could understand how those outside the family could not fathom their choices. And yet, a part of me could understand their choices. I could not make the same choices they were making. Regardless of our childhood, she was facing cancer, and I knew that if I were to find myself where she was, I would hope that people would be there for me. And so, I chose to be there for her.

As my sister’s caregiver, I gave up a lot. Some of it willingly, some of it because I did not know what else to do. And some of it because I did not have a choice because my sister appointed me as her power of attorney without asking permission. When I took on the role, I did not really know what being a caregiver meant. It took me until almost the end of cancer to even begin to understand that what it did not mean was giving up myself for another. Caregiver or not, I was still my own person, which allowed me to set boundaries and say no.

Early on, I would hear people say that cancer changes people. That statement sparked a hope inside me that my sister might have become a different person. That despite all that had happened and who she had been, that cancer would change her for the better. I hoped that my sister would become more appreciative of those around her, for her to become kinder and less manipulative than she had been before her diagnosis. To some, that may seem odd, but I had really hoped that it would be true. And in the end, cancer did change somebody it just was not my sister. It was me.

I am a vastly different person than I was before her diagnosis. The awakening that I had hoped would occur did not, as my sister has mostly remained the person that she was prior to cancer. While we spent copious amounts of time together during cancer, and even in the months that followed her remission, our relationship has returned to what it used to be.

To have given nearly four years of my life to try and save hers is something I may do differently if I could. Yet, it is still something that I would choose to do time and time again if faced with the same circumstances again. People often ask me how my sister is doing, and the truth is—I am not sure. As of now, we barely speak anymore. Do I wish it could be different? Sure. She is still my sister, and always will be. That said, it takes two to have a healthy relationship.

When she was diagnosed, I chose to set everything aside.

Through cancer, I continued to do so and used cancer as an excuse for her behavior towards both me and others. I continued to blame everything but my sister, and even once cancer came to an end, I did not see that she was partially accountable for our relationship. Until one day, I chose to do it differently. I decided to not be the one to pick up the phone or to be the only one planning to get together. Cancer does change so much in life, for both better and worse, and as much as I wish cancer could've changed our relationship, and while I hold on to hope that one day it may, I have come to terms that it may not.

Any other caregivers out there struggling with a relationship with the one they are caring for, or once cared for; you are not alone.

We choose their well-being over ourselves for many reasons. But I encourage you to do what has taken me far too long to do and choose yourself. If you can maintain a healthy relationship- excellent. And if you cannot, it is okay to set boundaries and even to walk away. Being a caregiver means that you can, and you should take care of yourself too.

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