Autonomy of a Caregiver: Fostering Relationships Outside of the One You're Caring For


Those people who may seem like a burden while you navigate the new normal that is life with cancer may be the very people who support you through this journey. For the caregivers out there: try to maintain your autonomy.

In the time that my sister was battling cancer, I didn't always place much focus on my own life. I let friendships fall by the wayside and devoted most of my time and energy towards her. Just as the relationship that my sister and I had changed from me being her sister to me being her caregiver, the relationships I had held external to that changed as well.

Initially, my focus was just on surviving the days. Making it from the hospital to home and getting the least bit of sleep before doing it all again. It took a long time to adjust to the reality that she had cancer. I struggled, my family struggled, and she struggled. I reached out to a few friends but didn't share with many others. It wasn't that I was trying to hide anything. Truth be told, I was trying to wrap my head around what was happening and hadn't given much thought on anything beyond that.

In the weeks following her diagnosis, I turned down every personal invitation that I received. I didn't take phone calls and I all but stopped answering e-mails. My focus was on her and what was being done to save her life. In that time, it hadn't occurred to me that those closest to me would be hurt by the choices that I was making. It hadn't crossed my mind that what I was doing was alienating friends and sacrificing my autonomy as a person for my sister.

I lost many friends that I had thought were close because I isolated myself. As time wore on, I lost contact with friends that I had thought would stand by me during cancer but didn't. I am sure that they all had their reasons but by-in-large I believe it is a culmination of both their choices and my own.

While these relationships were failing, some noted that I was no longer available to them and in all honesty, I wasn't. Some seemed to take my absence from events in their lives personally, but it wasn't personal at all. The fact of the matter was that time is precious, and I had counted on there being time to spend with them later. Because of the uncertainty that surrounded how much time left I had with my sister; I chose time with her.

At the time that these people were reaching out to me, I admit that I didn't respond. I thought some of them to be selfish because of what was happening in my life at the time; I had hoped for endless patience. In retrospect, many of them did give me patience. Many waited a long time and yet, cancer wore on and they couldn't wait anymore.

This hurt when it came to people that I had thought would be in my life forever. That hurt would later be turned to anger as I felt that they didn't understand what my family had been through. I felt justified for my lack of communication, given what had been unfolding. At that time, it was hard to be empathetic to their perspective when they seemed not to understand mine.

Just as with anything, though, as time has passed, my perspective has changed. While I wish that those who are no longer in my life from that time had been more thoughtful and patient while myself, my sister and my family endured cancer, I can also recognize that they were going through their own paths in life during that time too.

I now better understand that with cancer, two things are happening at once. Cancer is impacting a portion of your world, but the world keeps going. Outside the clinics and hospitals that you come to call home, life continues to unfold. I wish that I could go back and do things differently than I did. Unfortunately, life doesn't work that way, so I can't. What I can do however is offer some advice for those going through cancer now.

You don't owe anybody an explanation but take time to foster the relationships that mean the most to you. Those people who may seem like a burden while you navigate the new normal that is life with cancer may be the people who support you through this journey. For the caregivers out there: try to maintain autonomy. I know it’s hard, but I promise you it’s worth it.

And lastly, try to give both yourself and those around you grace. Life is hard for all of us, and in the end, we are all only human.

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