“To the world you may be one person; but to one person you may be the world.” – Dr. Seuss
And when that world—the child you have nurtured, molded and raised into adulthood—experiences an earthquake-size impact of a cancer diagnosis, the aftershocks can be enormous.
This might not turn out well
Jerry* and Eileen* were reveling in being grandparents to Aila’s* (their daughter’s) new baby and toddler when Aila received a breast cancer diagnosis. “I’ll never forget those 3 little words that changed our lives: ‘Dad, it’s malignant,’ she told me,” begins Jerry.
They immediately pitched in watching the baby, taking Aila to treatments and surgeries, and helping Aila’s husband with household chores. No matter how busy they kept themselves, they were unable to shake the ever-present and unspoken element about Aila’s cancer: “This might not turn out well.”
Jerry and Eileen both agree, “Aila’s strength inspired us—she just powered through, working full-time and being a great mother and wife throughout it all.” As parent caregivers, they found friends and neighbors who had gone through a similar experience, which was comforting. “You need to find your own support network,” explains Jerry. “You need to be able to moan and groan (about it to others), then get over it and go on with your day.”
They come first
When Emma’s* (child) called to share a Stage IV cancer diagnosis, Emma didn’t think twice about helping: she goes with to doctor appointments, treatments and surgeries, takes care of grandchildren, and researches clinical trials. “I am always thinking about my (child) and it does affect my life in many ways. I am very focused on (their) needs and they come first,” Emma states.
To cope, Emma has joined (her child) for therapy sessions and she keeps a journal where she can express her thoughts and frustrations and “get rid of them.” Emma admits, “I never want to read it again.”
For parents with adult children diagnosed with cancer, Emma shares, “We’ve got to always remember that they need to make their own decisions and that you need to support their decisions (about treatments, surgeries, etc.). When (my child) asks, I share my opinion, then butt out and let (them) decide.”
It helped me feel not so alone
Years before her daughter was diagnosed with breast cancer, Nadine* received a similar diagnosis. “I was very sad. I knew what I went through, what to expect, and what it meant for her,” begins Nadine, “but I still lost it when she told me about her treatment decision.”
Nadine went with to her daughter’s appointments and surgeries, even though it was difficult at times. Her advice to other parents in a similar situation: “When someone is going through cancer, just be there to listen and not give advice, otherwise you miss important details and information.”
“My daughter inspired me to go with her to activities and events at Gilda’s Club, the Young Survival Coalition, and Firefly Sisterhood, as well as participate in cancer-related benefits—things I probably wouldn’t have done otherwise,” shares Nadine. “It helped me not feel so alone during that time.”
I (Amy Tix—Firefly’s staff blogger) thought I could ask my own parents about what it was like when I was diagnosed in 2006. Sitting across from them in a booth at a local restaurant for lunch, I grabbed my pen and paper and looked up at them. Before uttering a single word, all three of us were in tears—almost 12 years after that fateful call from my doctor! I put down the pen, grabbed their hands across the table and we called off the interview.
A tremendous thank you to Nadine, Emma, Jerry and Eileen for sharing what it is like to be a parent caregiver for their adult children. We hold them, their children, and their stories close to our hearts and share them—reverently—with the world in hopes that the world does the same.
*Names have been changed to protect participant’s privacy.
This Is Living With Cancer