Many caregivers in the U.S. have found themselves caring for their loved ones through health crises, a global pandemic and economic upheaval — but what happens when it’s the caregiver who needs to be taken care of?
Allison Mertzman was diagnosed with stage two breast cancer last September. Mertzman, who was 36 when she was diagnosed, had been the primary caregiver of her daughters, who were just five and three years old. But in the face of a life-threatening disease, Mertzman watched as her wife Leanne took on the caregiving responsibilities while continuing to work as a lawyer.
“You're always just one diagnosis away from completely having your life ripped apart, and I think people don't understand what a diagnosis like that does to a family,” says Mertzman. “I had to step back as the caregiver. My wife had to take on a role that neither she nor I ever really planned.”
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Mertzman always knew wanted to be a mom, and even studied elementary and childhood education in college, recalling the joy she found in working with kids. Giving up those responsibilities — even though it meant caring for herself — took a toll.
“It was very hard because I'm not used to asking for help or asking for things that I needed,” she says. “Chemotherapy taught me how to ask for help — it was one of the toughest things that I’ve had to do.”
Mertzman was diagnosed with HER2-positive breast cancer, which is a type of cancer where a protein called human epidermal growth factor receptor 2 promotes the growth of cancer cells. For Mertzman, there were never lumps to indicate cancer, but she does recall migraines and her left arm going numb before finally heading to the doctor. Her first stage of treatment was chemotherapy, and at the onset, Mertzman could not keep food or water down.
“I ended up getting an intestinal infection, and I remember laying in bed and I just cried,” she says. “By day four or five, I couldn’t suffer in silence anymore. There was a TikTok that we did where Leanne came in with a barf bag because I started throwing up, and I was like, ‘I need that. I need your help. I can’t do this alone.’”
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Throughout her cancer battle, Mertzman turned to social media to share her journey with her nearly one million TikTok followers. She also partnered with CaringBridge, a nonprofit social network that helps people connect with loved ones during their healthcare journey.
But Mertzman wasn’t the only one who needed support: she feared the impact her diagnosis would have on her daughters. Mertzman and her wife decided to put their kids in therapy, acknowledging that between COVID and cancer, their daughters’ world was a hard, if not an incomprehensible place.
“I spent a lot of time in isolation, so my kids couldn't see me without a mask on, and because the brunt of my chemotherapy was during the winter during the COVID surges,” says Mertzman. “I've always been such a present parent, and all of a sudden I was sleeping all the time and unable to be around them.”
While both Mertzman and her family had their hands full with the physical and emotional burden of cancer, financial challenges also loomed. Mertzman estimates her family hit their out-of-pocket maximum in the first two weeks of 2022, spending between $15,000 to $20,000 in
“I was super grateful that we had fantastic health insurance,” Mertzman says. “But you have to jump through hoops to get the things that you need, whether it be access to doctors or access to medications.”
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Months later, Mertzman’s wife is also still struggling to access the benefits tied to California’s paid family leave policy, which gives workers eight weeks to bond with a child or care for a seriously ill family member, compensating workers 60-70% of their wages up to a maximum of $1,540 per week. While Mertzman’s wife had an employer willing to cover 60% of her salary while she was gone, the family hasn’t been able to collect the other 40% from the California government. It’s been six months since their request.
“Everybody is one diagnosis away from bankruptcy,” says Mertzman. “We're lucky we have any sort of savings. There’s no way people who are living paycheck to paycheck can pay their bills if they’re missing 40% of their income.”
Despite the last year putting their family to the ultimate test, Mertzman is hopeful that things will improve and she can return to her role as a caregiver not just for her daughters, but her mom, who was recently diagnosed with breast cancer, too. Mertzman just went to her last radiation appointment on June 6, and currently has no evidence of cancer in her body. She’ll continue to be monitored every six months for the rest of her life.
“I hope my kids can feel like they can be kids again, and they don’t have to deal with mommy being sick,” she says. “I hope I can stay for a really long time and [the cancer] never comes back.”
