As a woman in her mid-twenties, who hadn’t dealt with any major family deaths or illnesses, my mom’s breast cancer diagnosis knocked the wind out of me.
In November 2015, a nagging discomfort in her breast led my mom to finally schedule a mammogram she’d been putting off for a year, due to not having health insurance. Her abnormal mammogram turned into a Christmas cancer diagnosis. A lumpectomy surgery was scheduled for the new year.
Her doctors presented a confident prognosis: the surgery would take care of it, and there was only a slight chance she would need radiation. At the time, chemotherapy wasn’t mentioned as an option. But ultimately, my mom ended up completing four rounds of chemo, six weeks of radiation, and was prescribed a five-year regimen of hormone-inhibiting pills to reduce cancer recurrence.
Fortunately, my stepdad was able to become her primary caregiver. I was able to take advantage of my work’s family leave policy, driving four hours from the Bay Area to Northern Nevada every month to help during the exhausted, painful aftermath of chemo treatments.
For four months, I tried to ease the day-to-day burden by helping with errands, driving to doctor’s visits, and keeping my mom comfortable. I also read health insurance fine print and slathered her hive-covered skin in anti-itch cream whenever she’d get an allergic reaction to the chemo drugs.
Shortly after my mom’s diagnosis, I shared the news with my friend Jen, whose mom died from cancer 20 years ago. I explained the type of cancer she had — aggressive, but treatable — and the course of her treatment.
Jen met my matter-of-fact explanation with heartfelt empathy. She knew what I was embarking on, and gently welcomed me into a wrinkle of life’s fabric that neither of us had ever wanted to be in. I was comforted knowing she’d been in my place before.
But, being in the throes of it all, I couldn’t allow myself to be vulnerable enough to take her advice. Part of me feared that opening up — even slightly — would lead to my emotions spiraling in ways I couldn’t control, and wasn’t equipped to deal with at the time. So I resisted.
But looking back, I realize she gave me three great pieces of advice I wish I'd taken:
1. Get help for yourself, from the start
Caregiving is a challenging, beautiful, and emotionally complicated role in a loved one’s life. It can be practical work, like buying groceries or cleaning the house. Other times, it’s unwrapping fruit popsicles to stave off the heat, or reminding them they’re halfway through their chemo treatment, to stave off their discouragement.
Being an adult child caring for a parent inverted our relationship and revealed, for the first time in my life, the absolute humanness of my mom.
Talking through your feelings with a professional in a supportive environment, at the beginning of the journey, allows you to immediately begin processing the trauma and grief. Rather than the alternative: letting it build up over time into something you feel unequipped to handle.
It’s something I desperately wish I’d done.
2. Make sure you’re cared for, too
Taking care of a loved one who’s experiencing a serious illness can affect you, not just emotionally, but physically. The stress and concern I experienced over my mom's diagnosis led to disrupted sleep, a constantly upset stomach, and a diminished appetite. This made supporting and caring for my mom more difficult than it needed to be.
Prioritizing your well-being with simple things, like making sure you’re hydrated, eating regularly, and dealing with your stress, ensures you can continue to care for a loved one in a manageable way.
3. Find support in other caregivers
There are many online and in-person resources that facilitate connecting with other caregivers, like the Family Caregiver Alliance. Other caregivers, both past and present, understand this unique experience more than most friends or colleagues ever could.
I never fully explored these options because I feared caregiving would become a part of my identity. In my mind, that meant having to confront the reality of the situation. And the depth of my fear and grief.
I should’ve used my friend Jen as a resource in this capacity. She was incredibly supportive during that time, but I can only imagine how much better I would’ve felt if I’d shared the extent of what I was going through, caregiver to caregiver.
Take my advice
My mom finished treatment in October 2016, and the side effects from her hormone medication have stabilized. We feel so fortunate to exist and rebuild in this cancer-free zone, slowly making our way back to normalcy.
I will always choose to be there for my mom — no question. But if something like this ever happens again, I’d do things differently.
I’d do it with a focus on openly expressing my feelings, taking care of my mind and body, and connecting with others who deeply understand the challenges and honor of caregiving for someone you love.
A Bay Area transplant from the city with the best tacos, Alyssa spends her spare time researching ways to further intersect public health and social justice. She's very interested in making healthcare more accessible and the patient experience suck less. Tweet her @AyeEarley.