When my dad was first diagnosed with cancer, I was still in college – young enough to believe the adults had it under control. By the time I graduated and started graduate school, his pancreatic neuroendocrine cancer had metastasized. Those final months became a blur of medication charts, middle-of-the-night monitoring, and whispered conversations with doctors.
I watched the man who had always held everything together start to fade, and I learned – painfully – that caregiving means living in two realities at once: holding on while preparing to let go. Even with professional training, I was unprepared for the all-consuming role of a caregiver. It’s not just love and devotion – it’s logistics, coordination, and exhaustion that lives in your bones.
The Invisible Workforce
Family members are holding the healthcare system together. Informal caregivers provide 75% to 80% of all cancer-related care in the United States which accounts for labor that’s worth hundreds of billions of dollars annually (1). Most spend the equivalent of a full-time job –averaging 8 hours daily – helping loved ones navigate treatments, side effects, and paperwork (1). Nearly half experience clinical levels of anxiety or depression (1).
I’ve met caregivers who sleep in recliners near hospital beds, use vacation days for chemotherapy appointments, and skip their own medical appointments to save on copays. Their strength is breathtaking – but shouldn’t be required at this cost.
The Burden Isn’t Shared Equally
Financial toxicity devastates families already facing health inequities. Black and Hispanic cancer caregivers spend significantly more time providing care than White caregivers – 18 hours per week versus 8.7 hours, and report substantially greater financial burden (2). The costs add up: copays, parking fees, gas for multiple weekly trips, meals near treatment centers, childcare, and medications not covered by insurance. Research shows 35% of cancer caregivers stop working entirely, and 30% see household debt increase, with low-income families hit hardest (3).
My family maxed out credit cards, paying for what insurance wouldn’t cover. Months after my father died, my mother received a bill from the hospital for $100,000. Even in death, the financial toxicity didn’t end – it compounded grief with impossible debt. For families without access to credit or savings, the choices become impossible: food or medications, keeping the lights on or keeping appointments.
I think of a woman caring for her teenager while raising her younger children and working two jobs. She drove three hours to every oncology visit, hemorrhaging gas money and wages. When I asked who helped her, she smiled quietly: “No one really. It’s just me.” People of color, immigrants, rural families, and low-income households face compounded financial pressures alongside inflexible workplace policies, health literacy and language barriers, and geographic distances that multiply costs (4,5). These disparities perpetuate health inequities across generations, creating cycles of poverty that outlast cancer itself.
What Actually Works
We know what helps. Training caregivers on symptom management reduces anxiety (4). Support groups cut isolation. Respite care prevents burnout. Navigation programs and digital tools make coordination manageable (1,4).
At Patient Empowerment Network, where I serve as Communications Director, we see how technology bridges gaps. A video on managing nausea or a caregiver checklist gives families a sense of control they didn’t think possible.
Our Role as Advocates
Oncology social workers stand at the intersection of compassion and systems change. We normalize caregiver assessments during visits, asking: “Who will be missing work for appointments?” and “How will your family manage financially?” We connect families to support early, document strategically to protect jobs, and push for policy changes that create safety nets (1).
Expanding paid family leave, caregiver tax credits, and insurance coverage for psychosocial support isn’t just policy – it’s prevention, recognizing that the emotional labor behind medical advances hasn’t changed as treatments evolve.
What We Owe Caregivers
As one caregiver told me: “I’m holding up the foundation, but some days it feels like it’s crumbling under me.”
When I think back to those final weeks with my dad, I remember trying to appear composed – answering questions, signing forms, keeping it together. What I needed was someone to say, “You don’t have to do this alone.”
That’s what drives my work now. Every caregiver deserves more than gratitude. They deserve systems that recognize their labor, programs that strengthen their capacity, and policies that protect their well-being. No caregiver should have to learn the hard way that love alone isn’t enough. Addressing disparities in caregiver support isn’t optional – it’s essential to equity in cancer care.
References
- National Cancer Institute. Informal caregivers in cancer (PDQ®) – Health professional version. Updated 2024. Available at: https://www.cancer.gov/about-cancer/coping/family-friends/family-caregivers-hp-pdq.
- Kent EE, Rowland JH, Northouse L, et al. Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer. 2016;122(13):1987 – 1995.
- Bradley CJ, Kramer JL, Benefield JD, et al. Working, low income, and cancer caregiving: financial and mental health impacts. J Clin Oncol. 2023;41(16):2983 –
- American Cancer Society. The role of caregivers in cancer care. Updated 2023. Available at: https://www.cancer.org
- American Association for Cancer Research. AACR Cancer Disparities Progres Report 2024: Achieving the bold vision of health equity for cancer patients. Cancer Epidemiol Biomarkers Prev. 2024;33(7):870 – 885
