Rachel Bennet’s mother did not want to die. Laying in a hospital bed, the 67-year-old woman would not let go. Not yet.

“I said, ‘God, I can’t do this anymore.’ I said, ‘Can you just help her let go of me, and can you help me let go of her because we don’t know how to let go. I’m so tired and I know she is too,” Bennet said. “I think finally in that moment in that bed we both knew that we’d come to the end of the road.”

Bennet had spent the last 10 years fighting—advocating relentlessly for her mother’s care. After her mother’s death, Bennet is now fighting the battles she could not fight while her mother was alive. She is filling the time once occupied caring for her mother by meeting with attorneys, making legal challenges and seeking justice for her mother, who, Bennet says, experienced abuse and neglect in two nursing homes.

Like Bennet, caregivers eventually learn how difficult it is to find good care. What is promised in brochures and websites is far from the dingy, dirty reality. Nursing homes are loosely regulated, and those regulations are loosely enforced. Complaints are chronically under reported. In some states, like New York, staffing ratios are not regulated.

“We’ve had family members literally walk around from unit to unit to unit and count staff and then report to us, and there’s nothing we can do,” said Richard Danford, director of the Long Term Care Ombudsman Program at the Center for the Independence of the Disabled in New York.

In 2014, the year with the most recent data, there were 15,600 nursing homes in the United States caring for 1.4million people. There were an additional 835,000 patients in other residential care facilities.

And those numbers are are about to skyrocket.

With Baby Boomers aging, the number of people aged 85 and older is estimated to grow from 5.9 million in 2012to 8.9 million in 2030 to 18 million in 2050, according to the US Census. This growth is expected to put a burden on the system that is in place to care for the elderly, including nursing homes. That’s a system, according to experts, that is already overlooked and misunderstood.

“It’s a whole subject matter that’s gone pretty much ignored for a long period of time,” Danford said. “Because of that, we have a whole set of circumstances that are pretty unique in terms of healthcare. If you think about it, it’s going to be potentially someone’s final home….It’s critical that we understand what’s going on and how to pick the right place and what to do once somebody’s in there.”

Bennet’s experience is a testament to the importance of understanding this system. A classically trained dancer and yoga instructor living in New York City, she was in her 20s when her mother was diagnosed with early onsetAlzheimer’s. The burden of her mother’s fast-dwindling health was on her shoulders. She quickly learned that she was her mother’s only advocate.

“No one cares for your loved ones like you do,” she said.

Years earlier, Bennet’s father had died of lymphoma. He didn’t have health insurance, and her mother was left with no money. They had to find nursing homes that would accept their limited resources and have the ability tocare for her mother’s dementia and rapidly declining health: Bergen Regional Medical Center in New Jersey for nearly 10 months in 2013 and then Riverdale Nursing Home in New York for three years.

Bennet has been advised by an attorney to not discuss much of the abuse and neglect she says her mother suffered at these two facilities.Here’s what she can discuss: She witnessed filth, high staff turnover, nurses ignoring patients.

Her mother fell out of bed and injured her face; the guard rails had been left down. She experienced many frustrations when it came to her mother’s care.

It is difficult for Bennet to prove abuse, but she did file a police report when she thought her mother was being treated inappropriately. For the most part, she kept quiet for fear of retaliation.

She did not know the home was required to provide onsite inspection reports of violations. She did not know those documents were legally available to her. She did not know there were resources, such as the Centers for Medicare & Medicaid Services five star rating system or the Ombudsman Program, which provides advocates for residents in long-term care facilities.

About 1 in 10 Americans 60 and older experience elder abuse. However, only 1 in 14 cases of abuse are reported to authorities, according to the National Council on Aging. One study from the U.S. General Accountability Office reported that 70 percent of Department of Health & Human Services surveys miss at least one deficiency and 15percent fail to notice immediate jeopardy of a resident.

Bennet’s mother was transferred to Bergen County Medical Center’s long-term care unit. Her mother’s needs had exceeded the capabilities of her assisted living home. She knew immediately that Bergen was not someplace her mother should be living.

“My mom was put in the dementia ward, and it was like insane row. I had friends that came with me that were like, ‘Oh my God, Rachel,” Bennet said. “…It’s like none of the aides talked to the (residents). They just sat there checking their phones all day long.”

However, her experience is much different from what Bergen promises on its website.

“Our dedicated staff of professionals provides the highest level of care to our residents and helps create a home-like atmosphere to serve each individual,” according to Bergen’s long-term care unit webpage.

Bennet says her mother’s time at Bergen was far from home-like. Another patient sitting outside the facility commented on “Bergen’s cockroaches.” Bergen received two stars overall out of five from the Centers forMedicare & MedicaidServices’ rating system, which rates nursing homes based on health inspections, staffing anda list of quality measures.

After 10 months, Bennet found another nursing home that would accept her mother. It was in New York, givingBennet more opportunities to visit her mother.

Riverdale Nursing Home’s website displays photos of smiling nurses and residents in a spotless, sunny home. The website says it takes “pride in our facility, a place of nurturing where each resident receives the excellence of care needed to enjoy the quality of life one deserves.”

However, during a recent visit, the building appeared rundown and dirty. Online reviews complain of everything from a lack of leadership to lack of socialization for residents. It receives a one star rating on its Medicare profile.

Bennet believes her mother was happier at Riverdale. She had a tree outside her window, and she saw her daughter more. However, there were signs of abuse. Then at the very end, Bennet’s mother developed pneumonia and a wet cough. Bennet asked the nurse to have a doctor examine her.

“They said, ‘You’re always worried about your mother Rachel, you’re always worried. She’s fine. She’s fine,’” she said.

Just days later, her mother was in the hospital, dying.

Despite personal stories from people like Bennet and online reviews, both Bergen’s and Riverdale’s regular inspections from the Department of Health & Human Services show minimal minor deficiencies. Danford of theLong Term Care Ombudsman Program hears that complaint often, but he would not offer an opinion as to why inspections may not reflect patient experiences.

“I really can’t comment, from an opinion standpoint, on the Department of Health,” he said.

Danford has been working in the field for 30 years. He understands the challenges of nursing home patients and their advocates. He also knows the limitations of the ombudsmen program, which is federally mandated.

“(Centers of Medicare and Medicaid Services) recommends one ombudsman per every 2,000 beds, which would mean we would have 26 paid staff,” he said. “We have six paid staff. So that can tell you where New York State is comparatively with funding for the ombudsman program.”

While the ombudsmen are the greatest support system a nursing home patient has—beyond their own family—they have no regulatory authority.

“We have no authority to sanction somebody, issue a fine, close a facility,” Danford said. “That’s the Department of Health’s responsibility.”

Instead, their role in responding to a complaint is helping residents or their families advocate on their own behalf.

“That’s always the best way to get a resolution at the lowest level,” he said.

His office had 2,668 intakes between Oct. 1, 2015 and Sept. 30, 2016. Each call was responded to within 24 hours thanks to the full-time and nearly 90 volunteer ombudsmen. More than a third of those calls came from family or friends of a nursing home resident, and 40 percent came from the residents themselves.

Most calls were focused on resident care. They received 137 calls complaining about staffing.

“One of the things that’s happening in New York is the facilities being bought up by corporate chains or local chains that operate multiple facilities in an extraordinary frequency,” Danford said. “I don’t have actual numbers in front of me, but well over half, if not two-thirds, of the 174 nursing homes in New York City have been sold or turned over in the last 10 years. It’s remarkable. And one of the first complaints we get is that the staffing gets cut or the staffing turnover is huge.”

In the past, staffing levels reported on Medicare.gov were reported by nursing homes, but new regulations will require those numbers to be verified by payroll documentation. Danford believe this will help substantiate staffing levels.

New federal regulations may improve care for patients in other ways. Last year’s federal upgrade to long-term care facility requirements is the first major change in decades. The regulations include requirements for grievance procedures, involuntary discharges, food and more.