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The Changing Dynamics After Caring for a Family Member

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.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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.
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