A caregiver notes how honesty is the best policy when taking care of someone with cancer. She also discusses how she’s grateful that her daughter’s cancer experience happened before the COVID-19 pandemic so she could be there for her.
I’ve been reading some blogs lately about what people need when they are diagnosed with cancer and it made me think back to when I was with my daughter, Adrienne, and how I responded to what she needed every day for almost a year. One of the things we talked about a lot during that time was how we simply can’t imagine how people do it alone, which is how many people who have been diagnosed during the COVID-19 pandemic have had to manage.
The thought that I would not have been able to help her because of stay-at-home orders makes me cringe with anxiety even though it didn’t happen. I recently received a message from a young patient with cancer whose mother was a continent away when she was first diagnosed and couldn’t go help her daughter for months. I simply can’t even.
Even though I was as intimately involved with Adrienne as I have ever been with anyone in my life, there were times I had no idea what to do. I think one of the challenges is that cancer can be a very isolating experience to begin with. It’s very difficult for people on the outside to understand what’s needed because, like childbirth and kidney stones, the impact of cancer treatment is something you can really know until you know.
Several people in Adrienne’s life who had family members who had had cancer thought they knew what would be best for her because of what had worked for their relatives, but because each person’s cancer experience is almost as unique as a snowflake there is no tried and true recipe for success. So even though that advice was well intentioned, it often caused more stress than ease.
The times I felt the most confident was when we were dealing with the aftermath of surgeries because that was something I had experienced myself. I know how stitches feel, how you find out exactly how parts of your body are connected to other parts when you move a muscle and the pain ripples away. I felt very efficient organizing medication schedules and tucking pillows in just the right places to keep Adrienne as comfortable as possible. It was the one time … well, three times … that I felt the least helpless.
I found a very effective tool to use once we had settled into a routine of me mothering her again with things such as food, laundry, foot and back rubs, chauffeuring and trips to the grocery store to get what appealed at any given moment was to make sure I checked in with her to see if what I was doing was helping or hurting. The last thing I wanted was to have her put my needs first during a time when her life was a living nightmare, and the only way I could make sure she wasn’t was to open myself up to her being honest about her experience and not taking it personally if she needed me to stop or change what I was doing.
I learned not to assume, not to take for granted that I knew better, because I didn’t. Adrienne had to be in as much control of her life as she could because cancer had picked her up and kept tossing her around like a tree in a tornado, one side effect after another smashing her to the ground and bouncing her along with its devil winds while I had to watch from the safety of a storm shelter.
The truth is, though, that my only necessity during all of it was that she would live. It was very easy for me to adjust to the needs of her ever-changing existence as long as in the end when I said goodbye, it was just going to be because I was going home. It was only when that happened, when I knew the treatment had worked and I went back to my life that I began to look at what I needed in order to transition back into my new normal as the mother of a 29-year-old woman in remission. In that sense, my caregiver recovery has been a huge challenge because I didn’t give myself a chance to process Adrienne’s cancer experience bit by bit as things came along so I was hit by a wall of emotion when it was safe to feel it, when I could make things about me again.
It’s been a year now and I’m finally coming to terms with exactly how hard it was to hold her hand both figuratively and literally as she went through the worst experience of her life. And I can’t even come close to describing how grateful I am that COVID-19 didn’t stop me from doing it.
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