Reflections from a Cancer Caregiver

Caregiving has an enormous impact on more than just the patient and the one caregiving, but all the others around them as well. I set aside other relationships to focus so greatly on the needs of my sister. I sacrificed my own life and sometimes, my own well-being in favor or hers.

During my sister’s cancer and all that has followed, many people told me that I needed to take care of myself. I have told and written to other caregivers about the same thing. We have all heard the adages, “Put your oxygen mask on before saving another” and “You cannot help another until you first help yourself.” It is pure irony that I tell others this when I am so guilty of not doing it for myself while she was so sick.

Now that her journey is over, I can better understand why people told me the importance of self-care. Why, although I thought it was nagging, that they were giving me advice that was in my best interest. When they said, “Take time for yourself,” they meant more than a 15-minute shower, and more than a moment away to catch my breath.

Although she had a much larger care team than most, I was her primary caregiver. I became an extension of who she was and you would rarely, if ever, see her without also seeing me. It is a role that can cause extreme exhaustion and severe frustration. Looking back, I really have no idea where it is that I came up with the stamina to do it for as long as I did.

I cried often at the reality that we were facing. I silently suffered alone, knowing that my endless worries should not be hers. I witnessed so much pain in her eyes as she struggled to make it through some of the hardest of days. Every night spent at home, I tried to take a moment of pause and be grateful that it wasn’t a night spent in the hospital. She was in and out so often that any time away from clinical settings seemed like a gift.

Despite how many times I have heard that I am a large reason why she is still here, I do not believe it to be true. As odd as it may sound, I cannot think of a better time for one to have cancer than now — for all the new advancements that are happening in the field of oncology to be happening concurrently to her diagnosis has been by sheer chance. To me, that is the reason she is here – not the time I spent with her or how much I did.

I would do anything to have been able to trade places with her. She never truly reasoned with all that cancer was, and that was one of the hardest things witness. If I could have taken the pain away, I would have. The suffering that her diagnosis caused in the last three years has been more than unjust.

I am far from perfect. There were many times that I lost my patience, and moments at home when the thought of never going back to the hospital crossed my mind. I questioned if I was doing the right things or if I was doing enough. We were so focused on her making it through, but I wonder if enough was done to help her understand all that would come after cancer.

No matter how hard being a caregiver got to be, I continued to choose the role. I did so many times over and even looking back, I would choose it a million times over. Through all the good and the bad, I learned so much from being a caregiver. I am who I am today because of the choices that I made. And most importantly I have so many cherished memories that were made during a complex time in life that I wouldn’t trade for anything.