Complexities of Caregiving

When I think back to when my sister was diagnosed, the thing that sticks out the most in my mind was the innate fear of losing her to cancer. I was both angry and scared that her unwillingness to be seen would mean that no amount of treatment would save her. I was afraid that no matter how much anybody did for her, or how much she did for herself, that she would die anyway.

As her sister, I had my own set of emotions to cope with. Those emotions became far more complex when she chose me to be her power of attorney. In part, those emotions came to matter less because the choices I was charged with making had to be all about her. My personal emotions as her sister, including any leftover anger that I felt for how her diagnosis happened, needed to be set aside. It was a role that I don’t think anybody wishes to find themselves in, and a role that I filled for years.

In that time, so many things occurred with her care and we consistently fought an uphill battle to get her healthy. In some cases, it wasn’t even the end goal of remission that was at the forefront, but just getting her healthy enough to be able to continue any treatment in an effort to give her more time.

In some of the more difficult moments, people would express both their sympathies and awe at the dual roles that I was filling. It is nearly as hard to reflect back on those moments as it was to react to them as they were happening. While I may have regrets about what happened during, I do not regret taking the role of caregiver. But I didn’t ask for the power of attorney role and I do wish that it had not been a job that I was required to do. The reality is that I didn’t have that option.

Since my sister has gained remission, I have worked in various ways to personally move past all that happened. In some ways that was made quite difficult because of how close I was to cancer as a sister and a caregiver. Both have left me with equally unique challenges to overcome. The most common thread between them is the guilt that I often have felt.

When she was diagnosed, it was hard to go on with a normal life. When she was thought to be terminal, it became even harder to push on with the knowledge that she would be losing her life. Thinking about not having my sister for some of life’s biggest milestones was never a reality that I could reason with. It was one of the many things that motivated me to fight so diligently for her through her cancer journey.

After cancer, something that I have put the most work into is forgiveness of my own perceived failures and guilt. No matter how often people compliment, encourage or praise how well I performed as a caregiver and sister, the reality is that my opinion is different.

My guilt during and after cancer stems from various things. During cancer, I was guilty about how I spent my time, thinking that I shouldn’t be anywhere but her bedside all the time. When I wasn’t researching and looking into ways to help find a cure for her, I felt that I shouldn’t be doing anything but spending time with her. In my mind, she was going to die and so I had much more time than she did. Anything I wanted to do could be done later. She didn’t have that guarantee of later.

I felt guilty that I wasn’t always able to provide her with the solutions and answers that she frequently asked me for. I couldn’t promise her that she would be OK. Of all the guilt I felt, the hardest stemmed from all the decisions that I had to make when she didn’t want to make them or was not capable of making them.

Her cancer journey was composed of frequently gut-wrenching choices that were left to me. Yes, I was able to consult with world-renowned doctors and I spoke often to my father about these matters. In the end, those choices were mine to make. We reached what we would thought was to be in end many times and the choice to press forward with intent to reach remission was always the goal. I knew that was what she wanted, but the choices to create means to get there were often complex.

Through the spring and early summer of 2015, we began having discussions about the end. We had seemingly run out of options and it was time to discuss palliative and hospice care. I struggled mightily with these choices because I knew it went against what she wanted, but it was no longer a choice but something that was going to happen, despite everybody’s wants and desires.

I felt as though I had failed her as both a sister and as a caregiver. Choosing to take her home and make her comfortable was so difficult. She was 29 and was supposed to have a whole life ahead of her. In the end, I thought best to let her rest at home and pass at The Medical Center of Aurora (TMCA). This had been her second home and, although it may seem selfish, I wanted to be able to step back and be her sister in her final days — not the caregiver that I had been since diagnosis.

Of all the people that have spoken to me regarding guilt, I think my dear friend as well as my therapist share the same perspective. They have each told me, in their own way, that there is not and never was a need for me to be perfect, let alone a perfect caregiver. But I didn’t care. I was there more than anybody else, not just in my family, but for many involved in her care. I was present more than they had ever seen a singular person be.

While I still have remaining guilt, I think what I have now that I didn’t have before is perspective. I now understand that the person who is sick is not the only one affected by the illness. I watched as my sister struggled through cancer, just as those close to me watched as I struggled through cancer.

Something that nagged at me during cancer was the status of the relationship that I had shared with my sister. We were not the closest and I worried about what it would mean if she died. At 23, I had assumed that we would have a lifetime to grow, change and become closer than we were, but her diagnosis changed that. And when the word “terminal” came into the picture, it shattered any hopes that I had of that occurring.

However, I am lucky to say that my sister is now nearly two years in remission. And for me, that means that I am no longer her power of attorney or caregiver. While I once feared that there wouldn’t be time, there is. While I once wondered if there would be time to foster a healthy relationship with my sister, there is that time. So as where my focus used to be on curing her, it has now been redirected to focus on being the best version of myself and being a good sister.