Katy Freeman, 39, was a senior leader at a healthcare company when she unexpectedly delivered her son, Ollie, at only 26 weeks pregnant. The next four months included a lengthy hospital stay for Freeman, a trying NICU journey for Ollie − and work. Freeman’s employer, she said, shipped her laptop to her in the hospital.

These are the kinds of stories USA TODAY heard from caregivers around America.

Readers responded to The Cost of Care survey sharing how caregiving has changed them and their lives. USA TODAY launched the survey in May, asking readers about caregiving challenges and solutions they’d like to see in the care space.

“I went back to work at eight weeks postpartum, even though I was still in the hospital six weeks postpartum due to complications,” Freeman, from Aurora, Colorado, wrote. “I had to work because losing my insurance wasn’t an option. Ollie was in the NICU for four months, and I visited him every day on my lunch break.”

As part of The Cost of Care project, over the last six months, USA TODAY has shared stories from caregivers exploring the mental health impacts of caregiving; what happens when an aging parent needs more help than you can give; parents’ fears of what will happen to their disabled children when they’re gone; and how language barriers in the health field leave some family caregivers without respite.

Nearly 450 survey respondents, like Freeman, provided insight on what caregiving in America looks like today. Respondents said they’ve been caregiving anywhere from two months to more than 50 years. Many said they’ve changed jobs or quit working because of caregiving. More than 70% of respondents said they’ve developed their own health issues while being a caregiver, and 67% said they’ve dipped into savings or accrued debt to cover the cost of care. About half of the respondents said they’ve used federal, state or local caregiving resources, but nearly 180 respondents said they have tried to access caregiving resources and were denied.

Below are some of their stories, lightly edited for clarity.

She cared for her dad through her own chemo treatments

“I was diagnosed with cancer my second year of caregiving. I had to go through radiation and chemo while taking care of my dad. I ended up having to have major surgery and still had to take care of my father.

“Most people don’t want to put their loved one in a facility, but if they have to, the system takes every dime from the patient until nothing is left and they can go on Medicaid. There’s something wrong with that!”

-Vicki Davis, 70, from Aventura, Florida

‘The hardest job I ever had.’

“I had lost my job and moved back home with my mom, who was taking care of my younger sister, who was fighting a losing battle with cancer. She died and I stayed with Mom, who was 88 years old.

“Caregiving is a 24/7 job and is a very difficult job. I was the cook, grocery shopper, nurse, doctor, entertainer, etc.

“I have told people that caregiving was the hardest job I ever had, and it was the most rewarding one. I am 69 years old, live by myself and my health is not good and will continue to deteriorate as time goes by. I wonder what kind of caregiving will I get when I can’t take care of myself.”

-Terry Byrd, 69, from Bradford, Tennessee

This family makes ‘too much money’ to qualify for the assistance they need

“We thought we were doing the right thing insisting on caring for our son by ourselves. It has been a sacrifice, for all of us. We have two other children who have no limitations, and no matter how hard my husband and I tried, I know that they sometimes felt overshadowed by their brother.

“We wish that we could have an attendant that could come even one day a week to help. My husband has a good job and insurance, but all through my son’s childhood we were told that we made too much money for him to qualify for assistance. Once he turned 18, we discovered that the wait list was so long that he may never qualify. 

“We have never really had a family vacation due to the expense. Our money is used to cover any medical items and home improvements to make our son’s access to the home easier. Meanwhile, I have had two heart attacks due to stress. Also, I tore my rotator cuff in my right shoulder trying to keep my son from falling.”

-Cynthia Rowe, 61, from Arlington, Texas

He’s 34 and stuck in limbo as a caregiver

“I am 34 years old and have minimal work experience, so once my caregiving duties end, I am afraid that employers will find it difficult to hire someone like me.

“I scoff at those who suggest that I just attempt to obtain a work-from-home position, as if it is easy and will accommodate my caregiving responsibilities.

“My contemporaries are progressing in their careers, meeting society-accepted milestones such as marriage and having children, while I remain anxious and depressed due to my mother’s declining condition.”

-Stephen Santos, 34, from Pasadena, California

A caregiver’s grief ‘can be overwhelming.’

“My husband was a Navy veteran. The VA had facilities for dementia care, but there was never space for my husband. The only offer was for a live-in facility two hours from our ranch. He depended on me for security and my not being able to visit him often would have been devastating for him.

“I raise livestock. I had to eliminate anything that wasn’t critical to the care of the animals. I barely managed basic care. I feel fortunate to have been able to afford help a few days a week, but our savings dwindled at an alarming rate.

“It would have been heavenly to take a break and just go somewhere for a few days without him. And counseling. Someone to just listen and sympathize.”

-Robin Snyder, 77, from Kirkland, Arizona

‘The weight was relentless’ for this sandwich generation mom

“While helping care for my father with Alzheimer’s during COVID, I was also trying to keep my two young adult children afloat emotionally and academically, manage a family business and hold onto my own demanding career. Living on our rural family farm without access to high-speed internet meant that even basic telehealth services weren’t an option.

“The weight was relentless. In the middle of it all, I landed in the hospital with severe kidney stones. Not long after, I underwent bladder mesh reconstruction surgery because I had ignored my own health for too long.

“And that wasn’t the bottom. I hit a mental health crisis I never saw coming. The kind that builds slowly until suddenly you’re drowning, and no one sees it because you’re the strong one. The caregiver.

“There was no break. No pause button. My phone kept ringing. My inbox kept filling. 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 talked more honestly about what caregiving costs − not just in time or money, but in body and soul.”

-Amy Robinette, 48, from Pinetops, North Carolina

Madeline Mitchell’s role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.

Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.