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By Kim Johnson
“Being a caregiver is a role that is defined by cancer more so than it is by the caregiver.”
Being a caregiver is a role that is defined by cancer more so than it is by the caregiver. I did not understand that by taking on the part of the caregiver, I was signing up for a remarkable journey. Nobody knew what my sister would go through, and I had no idea that cancer would end up changing my life as it has.
I want to make it clear that I did make a choice.
I chose to be a caregiver for her, but that is not always the case with cancer. Caregivers are often chosen by default because of the situation that a patient unexpectedly finds themselves in after a diagnosis is given. They are loved ones or friends who end up making sacrifices within their own lives to care for the one with cancer. I know from my experience that you do not realize how consuming cancer can become when you are the caregiver. I had moments when I felt overwhelmed, but I brushed them off and kept pushing forward.
Truth is, being a caregiver is a role one assumes in life like no other.
I was lucky that even though what I was doing was not something I recognized, her care team certainly did. I sat in many corners of the infusion rooms while she received treatments. I lived in the hospital when she was admitted. I spent nights researching alternative therapies. I gave up my life to try and save her. And yes, I know that sounds dramatic, and I used to believe it was- but it isn’t about being dramatic. It is just about sharing what happened.
While she was fighting cancer, I was facing my own fight. I not only wanted to do all that I could to try and save her life— I also was fighting to make it through each day. Her battle was about enduring the complications that cancer and her treatments brought, and in comparison, it felt as though me watching her suffer, it was not something worth noting. In reality, what I witnessed will always be with me. Watching as she went through so much and carrying the burden of being unable to change any of it was far from easy.
The endless waiting that came with caregiving was torturous. You feel so helpless, and even when you can do something, it never feels as though you are doing enough. You wait for scans, decisions to be made- or in my case, you hope that you are making the right decisions. It is daunting as you hope that what you are doing for that person is making a difference. But cancer is its own beast, and no guarantees exist. What worked one day may not work the next, and as a caregiver, that is frustrating. But your job is not to panic, it is to remain present and convince the one going through cancer that it will all be okay, even when you don’t always believe it will be.
It is an exhausting role and one that changes who you are. I believe that cancer changes all your battle, and I think that is just as true for the caregivers who fight alongside the patient. We do what needs to be done, even when not asked. We see our family and friends go through the unimaginable. We are vented to when they are scared in the quiet of the night, we are abused as the ones we care for voice their frustrations at the ones that they trust. We are present for every moment from diagnosis to the end- no matter what form each ending comes in.
I feel as though we need to do more to recognize the complexities that come from being a caregiver. Because while I was beyond lucky that my sisters’ team was there to support me- that was not their job as healthcare professionals. Their job was to care for her, and that a caregiver needs support too should be a part of the more significant battle with cancer. We are affected by cancer just as the patient is, albeit in vastly different ways. That though does not negate the need to recognize the battle of caregivers.
This article was published by CURE Today.