How Caregivers Can Become an Active Part of the Cancer Care Team

When a loved one is diagnosed with cancer as my daughter was, hearing the words and the initial reaction can leave you feeling lost. There are different orders in treatment plans depending on what kind of disease and where it is. In my daughter’s case, the first step was to undergo surgery to remove the lump.

When her surgeon came out to see me after the lumpectomy to let me know she had done very well, he told me that she would be a very busy girl in the coming months. I would learn that would become one of the biggest understatements I have ever heard.

As a caregiver, it can be challenging to figure out just exactly what your role should be. I wanted my daughter to have as much control over her treatment and life as she could since one of the simple truths is that you have no control over cancer and that it leads you down its own path and your job is to follow along as best as you can.

At the same time, I could see that she would often feel overwhelmed by schedules or information.Sometimes I would look at her face as a member of the medical team was speaking to her and know she was still trying to process something that had been said five minutes ago while a lot of important details that were being given to her were passing her by.

After I noticed that the first time, I sat down and had a serious conversation with my daughter about what she needed from me that would be the most helpful. I wanted very much to respect her as the primary guiding force in what she was going through since I wasn’t the one with cancer and could not possibly fathom what she was truly feeling, and I recognized that it was exactly those feelings that would freeze her like a deer in the headlights when she heard about a potential side effect of treatment.As a result of that conversation and more that followed, we did several things that made me an active part of her team — both on the inside and the outside.

The next time we met with her oncologist, Adrienne explained that she would sometimes need me to be her voice during appointments because she would not be able to process some things as fast as I did and she would need the answers to her questions at some point. By identifying me that way with those providing her care, Adrienne let them know that they could speak to me about her as a third party and she would not feel like they were talking about her as if she weren’t in the room. I had many objective questions to ask that helped me immensely provide the support she needed to mediate the side effects as much as possible when we were at home.

I was also able to bring up some of the issues she faced that she wasn’t sure were worthy of bringing up because they were so small in comparison to her cancer. I think this can be a common issue with people with cancer, but sometimes managing the small things can be significant. It can be a challenge to think it’s worth it to complain about constipation when your hands and feet are numb, but it can make a huge difference in quality of life to have that problem eliminated … no pun intended.

I try to ask my adult children for their feedback in things such as what to have for dinner or which route to take to get somewhere. This was another area that Adrienne asked me to manage because once chemo brain set in, she had more and more difficulty making decisions without feeling overwhelmed.When nausea would be her daily companion, I wouldn’t ask if she wanted to try to eat, I would just create a plate of things cut into small pieces that had seemed to appeal over the last few weeks and put it in front of her. If she ate, she ate. The truth is, she would get something in most of the time.

I found that the nurses in the oncology ward were a blessing to everyone and I made sure to learn their names and acknowledge them every time we went in and do things such as ask them about their weekend.

A cancer treatment ward can be such a weird place to be and by humanizing everyone, I found it helped me to not feel hollowed out every time they hooked my daughter up. It can be difficult to find joy in that room and I made a point of doing my best to bring it to the table every time. By creating a relationship with the nurses, it made it possible for me to assist them in providing for my daughter’s care by doing things like grabbing an extra pillow or warming blanket. This helped me care for my child in a traditional “tucking her in” way since there was really nothing I could do to make the other parts of it any easier.

I am grateful that my daughter chose to let me in. It would have been very simple for her to isolate herself in despair and her decision to make me an active participant in ways that would be good for both of us made her cancer experience smoother.

The one thing that helped me the most to stay on that team was understanding that there would be times when she would need to crawl so far into her shell that I wouldn’t be able to reach her and to know that, in the end, she would come back out. Although those times were emotionally challenging, by separating myself from her during those moments, I was able to see that no matter how close I was to the situation I didn’t have cancer and sometimes she needed to go to a place where I wasn’t welcome.A place of anger, a place of resentment, a place of howling at the moon.

We all need that sometimes.

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