Her premature baby was born at 26 weeks, but she was still expected to work from the hospital.

Katy Freeman, 39, a senior executive at a healthcare firm, faced an unexpected early delivery of her son, Ollie, at just 26 weeks. The following four months were marked by a prolonged hospital stay for Freeman, a demanding NICU experience for Ollie, and ongoing work responsibilities. Her employer sent a laptop to her hospital room to allow her to continue working.

Stories like Freemans emerged from USA TODAYs The Cost of Care survey, which collected experiences from caregivers nationwide. The survey, launched in May, asked readers about their caregiving challenges and potential solutions in the care system.

Freeman, from Aurora, Colorado, shared: I returned to work eight weeks postpartum, despite still being hospitalized six weeks after delivery due to complications. I had to maintain my job to keep health insurance. Ollie was in the NICU for four months, and I visited him daily during lunch breaks.

Over six months, USA TODAY highlighted caregiver stories focusing on mental health, caring for aging parents beyond ones capacity, concerns about the future of disabled children, and the barriers caused by language differences in healthcare.

Everyday Caregiver Struggles

Freeman noted, I receive five times more support for combat-related PTSD than for daily struggles with postpartum anxiety and caregiver burnout. Nearly 450 survey participants shared insights about modern caregiving, with experiences ranging from two months to over 50 years.

Many respondents had changed or left jobs due to caregiving responsibilities. Over 70% developed health issues while caregiving, and 67% reported using savings or accumulating debt to cover care costs. About half accessed federal, state, or local caregiving resources, though nearly 180 participants faced denial when seeking help.

Jennifer Cortes Experience

Jennifer Cortes cares for her 82-year-old father, Julio Rivera, in Rochester, NY. He suffers from COPD, diabetes, and late-stage vascular dementia. A home health aide assists him for two hours three days a week, but Cortes and her husband, Ismael Cortes Sr., handle the majority of his care. Their adult sons occasionally help. Cortes also translates for the aide due to language barriers.

Cortes faced her own health challenges while caregiving: I was diagnosed with cancer during my second year of caregiving. I went through chemo, radiation, and major surgery while caring for my father.

Terry Byrd on Parental Care

Terry Byrd, 69, of Bradford, Tennessee, cared for his elderly mother. Caregiving is a 24/7 job. I was her cook, nurse, doctor, and more. It was the hardest job Ive had, but also the most rewarding. I worry about what support Ill receive when I cant care for myself.

Cynthia Rowe and Adult Disability Care

Cynthia Rowe cares for her adult son with disabilities. Despite having a steady income, her family was ineligible for assistance. Weve never had a family vacation because funds go to medical needs and home modifications. Stress led to two heart attacks and a shoulder injury while trying to prevent my son from falling.

Stephen Santos: Caregiving Limits Career Growth

Stephen Santos, 34, cares for his 79-year-old mother, Susanne, in Pasadena, California. Without income or affordable help, he fears future employment due to limited work experience. I see my peers advancing in careers while I remain anxious and depressed because of my mothers declining condition.

Robin Snyder on Caring for a Spouse

Robin Snyder, 77, of Kirkland, Arizona, looked after her husband with dementia. The VA offered distant facilities, but none nearby. I was fortunate to afford part-time help, but our savings quickly depleted. Breaks and counseling would have been invaluable.

Amy Robinette: The Sandwich Generation Struggle

Amy Robinette, 48, from Pinetops, North Carolina, juggled care for her father with Alzheimers, two adult children, a family business, and her career during COVID. There was no pause. My health deteriorated, and I faced a mental health crisis. We need honest discussions about caregiving costsnot just financial, but emotional and physical.

Madeline Mitchell, who covers women and caregiving at USA TODAY, reports with support from Pivotal and Journalism Funding Partners, without editorial input from funders. Contact: memitchell@usatoday.com or @maddiemitch_.

Author: Sophia Brooks