Stepping away from a caregiver role does not mean I care any less.
As a caregiver, I did many things for my sister. I provided physical and emotional support, both at home and in the hospital. On a practical level, I helped her with her daily needs, such a transportation and from appointments and dosing of medications. While I chose this role in part out of love and in part out of fear, but I do not have one steadfast motive behind my decision.
However, as much cancer changes the person that has been diagnosed, it also changes those around that person. As cancer progressed and mutated within my sister, my role as a caregiver changed, too. When she was at her sickest, I was her power of attorney and made nearly every choice for her. Now, I am no longer her caregiver. Not only because I chose to discontinue that role, but also because the role is no longer needed.
Since I have stopped being a caregiver, it has been a struggle to return to a normal life. I devoted an enormous amount of time and support helping and caring for my sister. I am lucky that I had many around me telling me that I needed to start focusing more on myself. While their words did not completely remove the guilt from walking away, it did help to lesson it.
While I was her caregiver, it was hard to find time for myself. I did spend time with friends, have a boyfriend and continue to spend time at home. But I spent far more time in medical facilities than I spent out of them. It was often hard for me to justify spending time away. I didn’t want to do things like go to the mall or to see a concert, because she would inevitably ask what I’d done and I felt so much guilt for doing what she couldn’t.
Having relationships other than the one with my sister was particularly hard for me, specifically with my fiancé and my twin. My twin and I were always close, but I gave up a lot of time with him while caring for her. This was hard for him, because long before cancer, our sister had not been the best of big sisters, and it was not easy for him to watch me sacrifice my time and myself when, to him, she seemed ungrateful.
For my fiancé, he struggled with the notion that I was placing her care above my own. When I was with her, I was losing who I was, constantly making sure she was comfortable and didn’t feel alone. Her happiness was often based on my presence, so that sometimes meant I wouldn’t go home for days at a time because I didn’t want to be the reason she was sad. To me, life was hard enough for her, so if I could do one thing to make her happy, I did it.
While I was my sister’s caregiver, I also was her advocate. I was constantly expressing her wants, needs and wishes. During this time, it became that much more important for me to journal, writing about my own wants, needs and wishes, while also venting about my own stressors. I felt that I couldn’t share these feelings because I was not the patient. I still think that writing has been one of the best coping skills during and after her illness.
As I began to consider ending my time as her caregiver, I tried to look towards the future. It was strange for me because while she was sick, I decided to pursue a career path in nursing. So, while I was stepping away from her care, I would, in a way, always be a caregiver. From this experience, I better understand a disease that once completely baffled me. I am grateful that as a nurse, I will have a certain level of empathy because I know what it is like to be the loved one of a cancer patient.
During her battle with cancer, I fought several of my own battles. As a young woman facing the possibility of losing my sister, I struggled with depression. And as somebody caring for somebody so sick, I faced anxiety over making the right decisions regarding her care and well-being. The stress of being a caregiver was overwhelming at times, as I placed her care over my own.
When I chose the role, I did not know that it would last almost four years. I also did not know how much I would learn or how much it would come to change me. Reaching out and receiving help for these issues I developed has helped me. Although an incredibly difficult decision, I think that returning to that role wouldn’t be the best thing for me, nor would it be best for my sister because if I cannot care for myself, then I should not be caring for another person.
As we celebrate my sister being in remission, I do worry about a recurrence and all that might mean. Having cared for her for so long, I worry about her. I was far more like a mom or nurse to her than I was her sister. I wonder who will step in if she ever requires that level of care again. As much as I love my sister, I will not take on the role of caregiver if that day is to sadly come.
I will always support her, and I will be with her in clinics and hospitals. The difference is that if it is to happen again, I will do those things as her sister — not a caregiver. This was not an easy decision to come to. I am glad that we had some hard conversations about her care, because if the day is to come where my sister once again has to hear that she has cancer, she also knows that she will not walk the road alone. Her sister will always be right there next to her.