Being a caregiver can be an isolating experience, but there is a wider community for all caregivers to lean on in their time of need.
Before my sister was diagnosed with cancer, she made choices that my family nor I agreed with that, in retrospect, ultimately delayed her diagnosis. While it was difficult to not be upset, I decided to set aside how I felt because the weight of the anger wasn’t something that I wanted to carry. Shortly after that choice and roughly two months in, I became my sister’s primary caregiver.
My siblings didn't ever let go of that anger and the residual feelings they had against her prior to cancer, and consequently, they did not partake in much of her journey. Our parents floated in and out during the years that she was sick but for large portions of time they weren't present either.
I will never portray myself as some sort of martyr because I chose to do what I did. And truth be told, had I known all that the role of caregiver would entail, I can't say with certainty that I would've taken part. Admittedly though, there was a time that I was angry at my family for their absence during cancer.
That my family didn't make the same choice I did doesn't make me right and them wrong. I dove into this work because I didn’t know what else to do. They shared commonalities about having a sister with cancer at a surface level, but by-in-large, I don't think they understand just how hard the job that had chosen to undertake really was.
At the time, I wasn't a nurse, nor did I have any plans to become one. Taking care of another person is something that I don't think anybody who hasn't done can quite understand. Day in and day out, you do your best to ensure that another human being is okay. I think one of the biggest things that others don't realize is the worry that comes with being a caregiver. You worry about everything.
You worry about questions that you need to ask the doctors, all the appointments that need to be scheduled and the medications that need refills. You try to plan your life around cancer, and somewhere that becomes too hard, so you give up and cancel your life to manage theirs. You seek other opinions, become a research specialist in a field that you once knew nothing about. You worry if the current treatment will fail like the last.
When things were hard, people wondered how I seemed to get through it, how I dealt so well when coping with the potential loss of my sister. The thing is, I wasn't heartless, and I was scared like everybody else. It's just that I didn't know what else to do, so I kept doing what I always did— even when things weren't going well.
Cancer is hard, and very early, I learned that you could get consumed in the many emotions of the disease. I didn't know what was typical for dealing with a sister who had cancer. The coping skills that I adopted were to push it all away. I set aside my emotions and did my best to get through the many crises that we faced. My focus was always to take care of everything and everybody despite how I was doing.
Sometimes I felt as if I was being judged for how I was handling the situation. At times, cancer was quite a lonely experience. I felt that nobody understood what it was like for a disease to dictate everything in your life. I don't wish what happened to anybody because nobody should have to live the nightmare that was our reality.
In the time that has passed since my sister gained remission, I have learned a lot about coping and caregiving. Some wisdom came from my journey but also from other caregivers that I have come to know. I now better understand the isolation that can occur when you care for another. The codependency that happens when you self-sacrifice to save somebody you love. But the biggest takeaway for me is that even though my family didn't understand others do.
To hear that what I went through is normal was a huge relief. All the mixed feelings that I had in that time, the confusion and concern that I was messing it all up- normal. Hard to believe because so much about my sister's battle with cancer was anything but ordinary. And even though, as a young adult caring for a young adult cancer patient is rare, I was not the first to do, and sadly, I will not be the last.
I wish that I had known this while I was in the heart of the storm. I hope that by reaching out and sharing my story, others who have been a caregiver or who were currently giving care will feel less alone. I feel like had I reached out or known the community that existed, maybe I could have had healthier skills to cope with the situation that I was facing. My advice to any of you caring for somebody now — please seek resources. Just as we tell the person that we love enduring cancer that they are not alone, as caregivers, neither are we.