Life-tested advice from lung cancer advocates
Andrea Parks and Danielle Hicks are as close as two sisters can be. They are former business partners, and now leaders at the GO2 Foundation for Lung Cancer, a career shift that began almost 15 years ago when their mom, Bonnie J. Addario, was diagnosed with stage 3B lung cancer.
At the time, they were on the verge of opening a clothing and home store together when they suddenly found themselves thrust into the role of caregivers for their mom.
As their family soon learned, there were few resources for people with lung cancer, so while Andrea, Danielle, their brother, Jared and father focused on helping Bonnie get better, they also started working to support her vision of creating a roadmap for people with the disease. In 2006, this roadmap became the Bonnie J. Addario Lung Cancer Foundation, which merged with the Lung Cancer Alliance in 2019 to become the new GO2 Foundation for Lung Cancer.
Today, the Foundation provides lung cancer information and support for people facing the disease.
Here, Andrea and Danielle share advice for caregivers, gleaned from their own experiences and what they've learned from others during more than a decade as lung cancer advocates.
Being diagnosed with lung cancer is scary. You don’t know what to expect. When our mom was diagnosed, we decided right away with our brother and father that we were going to every appointment with her…even when she said we didn’t need to go. We didn’t give her the opportunity to feel uncomfortable. We just showed up. Sometimes we were quiet, sometimes we asked questions.
People with lung cancer have told us that the diagnosis really clarifies who true friends are – because they’re the ones who are there, holding a hand, listening and just being present. We can guarantee that whatever you’re doing in the moment to offer support will be appreciated.
One of our mom’s mantras is that educated and empowered patients live longer. Facing lung cancer is complicated – there’s a lot of medical information to understand in order to make informed decisions. Caregivers can ease this burden by asking questions of the medical team and gathering information to help their loved one take an active role in their diagnosis. You can think about this as being a medical advocate. Our father did this for our mom. He created a “tumor binder” that held every report and scan, all of our appointment notes and questions to ask her doctors. It became an invaluable tool that helped us track and manage all aspects of our mom’s care.
It can be difficult for some people to accept help. For caregivers, this means it may be more effective to just do what needs to be done. For example, after our mom’s surgery, she was spending a lot of time in bed. We knew she needed to get moving, so we’d get her up, even when she didn’t want to. In the moment, she might have been frustrated, but at the end of the day, she was grateful we persisted. When it comes to stepping in like this, you just need to be careful not to cross the line. Some people really do want to face this alone – in those cases, you have to be respectful of their wishes.
It’s important for caregivers to let their loved ones know there is no right or wrong way to cope. Tell them it’s okay to feel angry or sad, to kick and scream about the unfairness of it all. Be there for them, but don’t let them live in this space. Helping your loved one keep their head in the game is half the battle. Support them through these tough moments, but then provide encouragement to help them focus their efforts on improving their physical and emotional wellbeing.
You can’t be a caregiver alone. You’ll need lots of help, as well as a safe space to share your feelings. For us, our safe space was with each other and our brother. We didn’t want to burden our mom with our fears – she already had enough on her plate – so we shared our feelings with each other. We also relied on our spouses and friends for help with everything at home – kids, meals, housework, errands, you name it – so we could focus on our mom. We also learned we had to take time for ourselves, because burning out wasn’t good for anybody – most of all mom, because then we couldn’t be there for her. So, lean on friends and family, find a support group and get the help you need to stay strong as a caregiver.
The GO2 Foundation for Lung Cancer transforms survivorship through its dedication to saving, extending and improving the lives of those vulnerable, at risk and diagnosed with lung cancer. The Foundation offers many resources for people with lung cancer and their caregivers, including monthly programming from the Lung Cancer Living Room, which provides education on all aspects of lung cancer, and the Phone Buddy program, which matches patients and caregivers with peers for support.