The illness struck Lisa Parladé’s father in September swiftly and without warning.

A serious intestinal condition, it required surgery and a long, painful recovery. In its wake, he has experienced cognitive decline. Santiago Parladé, 77, who used to cook his own meals and drive his own car could no longer care for himself. He suddenly relied on his daughter for everything, even bathing.

“This is a person who’s raised me and taken care of me and you want to do the same thing for them in their time of need,” said the 34-year-old student adviser at the University of Pennsylvania, “but I don’t have the training, I don’t have the expertise, I don’t have the time.”

Finding a home health aide became another long ordeal.

The pandemic has made home health staffing nationwide even scarcer than it already was. The Parladés are among an untold number of Americans who had no option but to become caregivers, potentially damaging careers and straining relationships with the people they love the most.

“I’m having to give her 110% of myself,” said Jessica Berger, whose daughter Zoe Potack, 11, has severe autism, “but I have a husband and I have my [other] daughter. It doesn’t feel good to not be able to give my time and attention to all those other things and people that matter.”

Even before the pandemic, turnover rates in home health ranged from 40% to 60%. In Pennsylvania, which as of 2020 had the fourth most home health and personal aides in the country, median pay is a little less than $13 an hour. Then COVID-19 compelled people on lockdown to cancel their home health aides, some fearing that would bring the virus into their homes. Hospitals canceled nonurgent surgeries, reducing the number of people who typically would need home care.

A survey this month of 122 members of the Pennsylvania Home Care Association found that their nonmedical care worker staffs have declined by a quarter since the beginning of 2020 and skilled medical care workers by 20%. More than 90% of providers surveyed said they had declined requests for care since 2020 due to staff shortages.

Some home health workers have found more lucrative jobs and may never return, said Denise Tyler, an expert on aging policy and long-term care with the nonprofit research institute RTI International.

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“I think there are just increasingly attractive options for folks to do work that’s possibly not as difficult as home care and now pays even more as home care,” she said.

Nationally, the number of workers in home health care professions declined by almost 2% in 2020, according to data compiled by Altarum, a nonprofit research and consulting firm focused on health care. It has rebounded slowly over the last year but is still below pre-pandemic counts.

‘Getting no, no, no’

Finding home care, families said, requires navigating a bureaucracy that can be maddening. Berger noted that one agency found a person who was available to work with Zoe but who was dismayed to see Zoe was not the elderly person she had expected. Parladé, who lives with her father in Northeast Philadelphia, described spending a month seeking care through the Philadelphia Council on Aging, only to be told her father didn’t qualify.

“I know I’m not the only one who’s just exhausted by the way things are,” she said. ”It just feels so insurmountable, constantly calling, calling, calling and just getting nos, nos, nos.”

Cindy Addenbrook, 43, lives in Manayunk, but from February 2020 to August 2021 she and her brother from Texas moved in with their mother, Carolyn, in St. Louis. Their 76-year-old mother had been hospitalized in 2020 with sepsis and continued experiencing chronic infections, along with diabetes, high blood pressure, and kidney problems. Her rehab period ended about as the pandemic lockdowns began, but in the following months her children decided it was safer to keep her home.

“We were doing IV antibiotics, doing wound care,” Addenbrook said. “All of those things.”

At the same time, Addenbrook’s father was in an assisted living facility and they couldn’t visit him because of COVID-19 protocols. They saw his health decline from a distance.

Both siblings worked full time remotely, using a whiteboard schedule to make sure they didn’t have virtual work meetings at the same time.

“I am shocked my brother and I kept our jobs,” said Addenbrook, who is in marketing.

Even if they could have afforded it she isn’t sure they would have used home health care.

“You’re dealing all the time with the people coming in the house who were not taking it as seriously as you hope they would,” she said. “You’re constantly fearing that somebody is going to kill your parent.”

John Janco, of Collingswood, brought his mother-in-law, Catherine Costello, home from surgery for a shattered hip just before the pandemic. The 83-year-old also has dementia. He feared that one of the many health workers who came to help would expose her to COVID-19, and worried about the quality of caregivers.

“Who’s this person coming into the house?” he said. “You have no idea where they’ve been.”

‘A juggling act’

In December, Berger, 41, was excited to have her daughter Zoe return to their Downingtown home after she lived 10 months at a residential facility in Baltimore. The plan was for her to go to school during the day, and then bring in aides to help with such tasks as meals and bathing from late afternoon until evening. Instead, they went six weeks without finding a school placement and are still seeking home health care.

Zoe’s condition includes self-harming. Her hard blows damaged her eyes so much she is mostly blind. At the Kennedy Krieger School in Baltimore, her condition improved, her family said, but without daily professional care she has regressed.

On a recent evening, as the family sat around the table for a hoagie dinner, Wes Berger, Jessica’s husband, noted that his wife had not touched her sandwich.

“She doesn’t get to eat dinner because she has to take care of Zoe,” he said. “It’s just a juggling act. It can be tiring and stressful.”

After dinner, the family had about an hour of downtime before Zoe’s bath. Zoe wore a helmet and padded boxing gloves to keep her from hurting herself but seemed content hanging out with the family. It was a good night, Jessica Berger said.

Zoe rises long before dawn almost every morning, screaming and stomping. Jessica Berger wakes up at 4:30 a.m. to try to head off her daughter’s tantrums so the rest of the family can sleep, but the tantrums usually happen anyway.

Stuck in Congress

Advocates for the industry and policymakers are pushing to boost home care pay. Pennsylvania this month agreed to an 8% increase in Medicaid reimbursement rates, half of what advocates were seeking.

“The workforce challenges, they’re just astronomical,” said Teri Henning, chief executive for the Pennsylvania Home Care Association. “Providers all across the state say they’ve never seen anything like it.”

The proposed federal Better Care Better Jobs Act would boost funding for Medicaid, require Medicaid coverage for home care, and make enrollment easier. In Pennsylvania, the act would increase the number of seniors and people with disabilities receiving care by 120,000, a statement from Sen. Bob Casey’s office said, but it remains stuck in the divided Congress.

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Even with the Medicaid increase and a $1.2 billion influx from federal pandemic recovery funding, there isn’t enough to meet demand, said Meg Snead, acting secretary of the Pennsylvania Department of Human Services.

“Never in my lifetime did I think I’d get to the point here that $1.2 billion doesn’t fully move the needle on something,” she said.

Now, it’s easier for families to find financial support for nursing home care than home care.

“I cannot overstate the importance of Build Back Better and what that would mean for our systems,” Snead said of the federal legislation that would promise $150 billion for home care.

Parladé experienced the funding crunch when after three separate assessments over the course of a month the Philadelphia Council on Aging offered only six hours a week of care — provided she paid for it all herself.

Parladé reached out to private companies, but she found she couldn’t take the time she needed to consider whether she’d found a good match because caregivers were so quickly booked.

“There was this pressure I felt that immediately after meeting this person you had to decide right here, right now,” she said.

Janco, of Collingswood, had similar difficulties. On a security camera, he saw an aide do nothing as his mother-in-law stumbled and nearly fell, and fired the person. He struggled to find another.

Addenbrook finally found a senior apartment for her mother in June 2021, and she receives morning and evening visits from a caregiver. Both Janco and Parladé found home care recently through social or family connections.

“For my dad’s part, he seems to like her,” Parladé said of the caregiver who started about a week

ago. “He has to continue to like them, as well.”

Loving roles in conflict

Home care services don’t just relieve relatives of physical care duties. There also can be enormous emotional strains.

“I’m not a behavioral therapist,” Jessica Berger said of the struggles with Zoe that can escalate over the most basic tasks. “I’m her mom.”

Others described intense feelings of isolation. Their relative’s needs, they said, are so extensive they have no time to connect with friends or find time for themselves.

“It was a very lonely experience,” Addenbrook said. “We were on hyper-alert all the time.”

Parladé decided she needed to find home care around Thanksgiving, as she became increasingly torn among her roles as a daughter, caretaker, and full-time employee.

“I think that’s a big compelling reason why I realized I can’t do this on my own, because I found myself so depleted of patience and getting frustrated,” Parladé said. “Me doing this and me being so empty, barely being able to take care of myself and doing what I thought was a really crap job, I thought this is unfair to him.”