20 years ago, they were caring for loved ones. They're still struggling to financially recover.

Jeff Mason, 76, could get by if he didn't drive for Uber until 2 a.m., but money would be tight.

Decades ago, Mason had a stable job in construction, while his wife, a stay-at-home mom, returned to work. However, in 1993, she had pains that required gallbladder surgery. They paid to keep her employer's health insurance after she took a leave of absence. While undergoing treatment, she discovered a lump in her breast. It was cancer.

Months later, bills started pouring in. They later discovered they didn't have coverage, as her cancer was a pre-existing condition. They cashed in their IRA, sold their car, and remortgaged their homes. By the time her treatments concluded, their bills totaled about $300,000. Mason would work 12-hour days and weekends. His wife worked in elder care.

After years of methodical saving, Mason built his IRA to around $300,000, and he retired in early 2018. But after years of retirement, he felt uneasy about further medical costs. In 2020, Mason was diagnosed with prostate cancer and had several heart surgeries, and he figured that medical costs wouldn't go away in the near future.

Over the last year, dozens of older Americans told Business Insider that caring for loved ones years ago, while rewarding and important, was hard to financially bounce back from. Some, like Mason, said they recovered their losses through meticulous planning. Others never had the chance to recuperate, as they couldn't secure a decent job or had to care for another family member. Many said they felt forgotten and left to fend for themselves, sometimes working into their 80s and 90s to save enough.

This wasn't the first time Mason had been a caregiver. His brother lived with him on and off before he met his wife. Mason and his wife took care of her best friend's two children while she battled multiple sclerosis. His sister and niece lived with them during financial hardship, and their youngest daughter needed care after a cancer diagnosis. And both of them cared for their ailing parents.

Mason began driving for Uber a few years ago, aiming to make $600 a week. He typically works nights and weekends and said driving feels somewhat effortless, despite his health. Much of his money anxiety has subsided, though it'll never disappear, especially since he wants to leave his children with something.

"I know that if I retire today, we'll be able to make it work and could possibly remortgage our house. But everything is getting more expensive," Mason said. "Our children check up on us and want us to move closer, and we know they'll have our back when we get older."

Nationwide, there are about 53 million unpaid caregivers, many of whom don't work or have modified hours. AARP quantified that caregivers pay about $7,200 annually on average in out-of-pocket caregiving expenses, while 13 million are navigating their own health issues. About a third of those caring for adult loved ones are also raising children under 18. Very few have any medical training.

For decades, experts have been pointing out how people need more support given the cost required to care for family, said Emily Abel, a professor emerita of health policy and management at UCLA. The US continues to spend less on long-term care than most other wealthy nations, she added.

"Anyone can become incapacitated and need a caregiver, but we don't champion our caregivers," said Kendra Davenport, president and CEO of Easterseals, a nonprofit providing disability services. "Private care for anyone of any age is outrageously expensive, and most insurance doesn't cover all of it, so unless you have very deep pockets and a benefactor, you're not going to be able to afford it."

When there are no breaks

For many of America's caregivers, there are few breaks to pause, breathe, and restart.

Sonja Egan Johnston, 83, worked as a marketing researcher, reporter, and event organizer during her career, but in 2006, her mother was in a car accident that also killed her uncle. Her second husband had died years prior, so she had no financial assistance. For two months, she stayed with her mother in the intensive care unit, and she sold her house to become an unpaid caregiver in Olympia, Washington.

Her mother improved and had a few healthy years, but she developed dementia and required more intensive care. In her mother's last two years, Johnston's younger brother came to help with daily caregiving tasks. Her mother died in 2013.

Around that time, her brother was diagnosed with cancer, and his health deteriorated. She became his full-time caregiver, and he died in 2015.

Her son had experienced mental health challenges, and while she cared for her family members, she helped him find places to live. At this point, she had depleted much of her savings. From 2015 to 2018, she provided her son with a place to live.

"A lot of women my age are up against this and don't have a lot of resources," Johnston said. "It's hard for a 50-year-old to move jobs easily, and for 80-year-olds, it doesn't get a lot easier."

She decided to become a paid caregiver through the state for her son and other clients in 2018, including people in hospice care, with addiction problems, or with Down syndrome. She worked six days a week for the first few years, though she's recently had a harder time finding clients.

"Financially, I'm not at a great point, but I do have some savings I can use, and I have equity in this house that would give me a few more years," Johnston said. "When I wake up in the morning and my feet hit the floor, I say it will be a good day."

An optimistic ending

Some older Americans told Business Insider that they were able to have a fulfilling retirement after a long stretch of caregiving, despite the traumas that still linger.

Patricia Newell Smith, 82, married her husband, Rick, at age 19. He was a star athlete and a combat soldier before becoming a math teacher. Patricia, who lives outside St. Louis, taught social studies.

For 30 years, their marriage was "nearly perfect," she said. They raised their son, Steve, and lived normal lives. Rick was an intense saver, at one point working three jobs, and they paid off both their houses during their marriage as quickly as possible.

She recalled that on his 40th birthday, he ran over 20 miles. However, the signs were showing that he was predisposed to myotonic dystrophy, a progressive muscle loss disorder. She remembers how his hand would slip off the monkey bars while playing with their son.

Ten years later, he couldn't walk without a cane. He worked until he could no longer stand up, retiring at the peak of his earnings. He wasn't yet 62, so he didn't get Social Security, but he received a 50% teacher's pension. His brother showed symptoms earlier, and as he had no caregiver, they helped him get into a nursing home, where he died in 2007. With $35,000 in personal savings, Patricia quit teaching and took a higher-paying job with 401(k) benefits.

"I sold myself out for money in business, which had much better pay, benefits, and a pension, but I got what all people who sell themselves for money do: regrets and money," Patricia said. "My husband's disability meant we went from having plenty of money to having not nearly enough, and I had to splice that gap. I had to put money first, and I did."

A decade into working as a training manager for a grocery chain, Patricia retired in 2001 as her husband's health declined. She became Rick's full-time caregiver. They had about $250,000 in personal pension funds.

Her insurance covered most of his medical costs. They rolled all their 401(k)s and other retirement funds into indexed annuity IRAs, enough to cover their needs. As she got older and his care required more attention and physical strength, she hired at-home nurses.

"It was painful to watch someone you knew as strong and well and whole deteriorate into an absolute shambling wreck of a man," Patricia said. "I didn't sleep at night for 10 years. It was running me into the ground."

Rick died in 2011 at 69. Steve, her son, advised her not to make any drastic decisions as she processed years of trauma. She took some vacations in the years after her death and tried to avoid making any major financial choices.

Patricia now lives on her two pensions from work, required minimum distributions, Social Security, and occasional IRA withdrawals, which is fully paid off. She doesn't have anywhere near the amount she anticipated, but she has enough to live a full life. She's become more involved in her community, volunteering as an environmental officer, participating in book clubs, and hiking.

"I don't believe in dwelling on dying when it's inevitable," Patricia said. "I can die happy having everything a woman can have: fun adventure, travel, and love in my life."