Katie Freeman, 39, was a senior leader at a healthcare company when she unexpectedly gave birth to her son, Ollie, just 26 weeks into her pregnancy. The next four months included a long hospital stay for Freeman, a grueling stay in the NICU for Ollie, and work. Freeman’s employer sent her a laptop while she was in the hospital, she said.
These are the kinds of stories USA TODAY heard from caregivers across America.
Readers completed the Cost of Care Survey and shared how care has changed them and their lives. USA TODAY launched a survey in May asking readers about their caregiving challenges and the solutions they would like to see in the caregiving field.
“I returned to work eight weeks after giving birth, even though I was still in the hospital six weeks after giving birth due to complications,” Freeman, who lives in Aurora, Colorado, wrote. “Losing my insurance wasn’t an option so I had to work. Ollie was in the NICU for four months and I visited him every lunchtime.”
As part of “The Cost of Care” project, over the past six months, USA TODAY has been sharing stories from caregivers exploring the impact of caregiving on mental health. What happens when your elderly parent needs more help than you can give? Parents worry about what will happen to their children with disabilities if they die. And how language barriers in the medical field prevent some family caregivers from getting a break.
Nearly 450 survey respondents like Freeman provided insight into what caregiving looks like in America today. Respondents said they had been providing care for anywhere from two months to more than 50 years. Many people change jobs or quit their jobs because of nursing care. More than 70% of respondents said they developed their own health problems while being a caregiver, and 67% said they put money into savings or took out debt to cover caregiving costs. About half of respondents said they had used federal, state, or local care resources, but nearly 180 respondents said they had tried to access care resources and been denied.
Below are some of their stories, lightly edited for clarity.
She cared for her father through his own chemotherapy.
“I was diagnosed with cancer during my second year of caring for my father. While caring for my father, I had to undergo radiation therapy and chemotherapy. Eventually I had to undergo major surgery, but I still had to care for my father.
“Most people don’t want their loved one in a facility, but if they have to, the system takes all the money from the patient until there’s nothing left and they can get Medicaid. There’s something wrong with that!”
-Vicky Davis, 70, of Aventura, Florida
“It was the hardest job I’ve ever had.”
“I lost my job and moved back home with my mom, who was caring for my sister as she continued to battle cancer. When she passed away, I moved in with my 88-year-old mom.
“Nursing care is a 24-hour job, 365 days a year, and it’s a very tough job. I’ve worked as a cook, a supermarket clerk, a nurse, a doctor, and a celebrity.
“I’ve told people that nursing care has been the hardest and most rewarding job I’ve ever had. I’m 69 years old, live alone, and my health is not great and will only get worse over time. I wonder what kind of care I’ll get if I can no longer take care of myself.”
-Terry Byrd, 69, of Bradford, Tennessee
This family doesn’t qualify for the help they need because they have “too much money”
“We thought we were doing the right thing by taking care of our son ourselves. It was a sacrifice for all of us. We have two other children with no restrictions, and I know that no matter how hard my husband and I tried, they sometimes felt overshadowed by their siblings.
“I wish we had an aide who could come and help us at least one day a week. My husband has a good job and has insurance, but since our son was little we’ve been told we make too much and don’t qualify for assistance. When our son turned 18, we found out the waiting list was so long that we might never qualify.
“We’ve never taken a family vacation because of expense. Our money goes to medical supplies and home improvements to make it easier for my son to get to the house. Meanwhile, I’ve had two stress-related heart attacks. I also tore the rotator cuff in my right shoulder trying to keep my son from falling.”
-Cynthia Rowe, 61, of Arlington, Texas
He is 34 years old and stuck as a caregiver.
“I’m 34 years old and have minimal work experience, so I’m worried that once I finish my caregiving career, it will be difficult for employers to hire people like me.
“I scoff at people who suggest I get a work-from-home job, as if it would be easy and accommodate my caregiving responsibilities.
“While others my age are achieving socially recognized milestones such as marriage and childbirth, and progressing in their careers, I remain anxious and depressed due to my mother’s worsening health.”
-Steven Santos, 34, from Pasadena, California
A caregiver’s grief “can be excruciating.”
“My husband was a Navy veteran. The Veterans Administration had a facility for dementia care, but there was no space for him at all. The only offer was a live-in facility two hours from the ranch. My husband relied on me for security, and it would have been devastating for him not to have frequent visits.”
“I have livestock. I had to eliminate everything that wasn’t essential to caring for the animals. I could barely do basic care. I think we were lucky to be able to afford assistance a few days a week, but our savings dwindled at an alarming rate.
“If I could just take a few days off and go somewhere without him, it would have been heaven. And counseling. Someone who just listens and empathizes.”
-Robin Snyder, 77, of Kirkland, Arizona
Mother of sandwich generation: “My weight was unforgiving”
“While helping to care for my father with Alzheimer’s disease during the COVID-19 pandemic, I was trying to keep my two adult children mentally and academically healthy, running the family business, and maintaining my own demanding career. Living on a rural family farm without access to high-speed internet meant that even basic telehealth services were not an option.
“The weight was unrelenting. In the midst of it all, I ended up in the hospital with severe kidney stones. I then had bladder mesh reconstruction surgery because I had neglected my health for too long.
“And it wasn’t rock bottom. I had a mental health crisis that I didn’t see coming. It slowly gets worse and then all of a sudden you drown and no one sees it because you’re the strong one. The caregivers.”
“There were no breaks. There was no pause button. The phone kept ringing, the inbox kept filling up. My kids still needed me. My dad still needed me. And the world still expected me to be the glue that held everything together.”
I wish we had had a more honest conversation about how nursing care costs not only time and money, but also physically and mentally. ”
-Amy Robinette, 48, of Pinetops, North Carolina
Madeline Mitchell’s role covering women and the care economy for USA TODAY is supported by the following partnerships: extremely important and Journalism funding partners. Funders do not provide editorial input.
Contact Madeline at: memitchell@usatoday.com and @maddiemitch_ With X.
