LABOR OF LOVE: A look into the life of a 24-hour home health aide

September 10, 2019

By Andy Newman / The New York Times

Tuesday night was rough. A sharp scent drifted into Marjorie Salmon’s dream world at 4 a.m. She was still trying to rouse herself when its source, her 77-year-old client, pounded on her bedroom door, yelling that he wanted to go home.

“You’re home, Bob. This is your home,” Marjorie told him. She calmed him down, cleaned him off, showered him, dressed him and put him back to bed, but could not get herself back to sleep.

Now it was deep into a dreary Wednesday morning. Marjorie set out a bowl of Cheerios, a plate of strawberry and apricot slices in a star pattern, milk, juice and a plastic shot glass with six pills in it — blue, white, brown.

“Where are you, Bob?” she called. “Come in and have breakfast, finish your food, your cereal, then you have your medications.”

This was in late May, but it could have been pretty much any time this year. Since mid-January, Marjorie has been Bob Dettmer’s round-the-clock caretaker. Bob is fogged in by Alzheimer’s and unsteady from Parkinson’s. Marjorie’s job is called home health aide, but the term does not begin to encompass her duties. She is social worker, housekeeper, behavioral-modification expert, dietitian, diaper changer, day planner, de facto case manager, warden and more.

Marjorie agreed to do the job for a flat rate of $160 per day plus room and board. Her workday starts when Bob wakes up, or before, and finishes after he goes to sleep, and can stretch for 14 or 16 hours or more. She works 26 or 27 days out of the month. The pay is not much — at 16 hours a day, it would come to $10 an hour — but Bob’s family is deeply grateful, and that counts for a lot.

“If I take a client and I have the respect,” she said, “I will stay through to the end.”

High demand, low pay

Home health care is the fastest-growing major job category in the country, one of the most emotionally and personally demanding, and one of the worst paid.

Elder-boomers living longer and seeking to “age in place” rather than in institutions have created a demographic explosion that even a 150% increase in home care workers in the past decade, to nearly 2.3 million, cannot keep pace with. Nationwide, hundreds of thousands of ailing people entitled to Medicaid-funded home care are on waiting lists.

But home care workers’ labor happens behind closed doors. The workers are mostly women of color, and about one-third are immigrants. As a result, many advocates say, their work is systematically and systemically devalued, dismissed as “domestic care” and reimbursed at rock-bottom rates by state Medicaid programs.

It is a vicious circle. Because these have always been poor-paying jobs, they are seen as lousy, low-skill jobs. And because they are seen as lousy, low-skill jobs, they pay poorly.

“Rather than calling them low-wage workers, I would call these workers professionals who are paid low wages,” said Robyn Stone, senior vice president for research at LeadingAge, an association of nonprofit aging-services providers. “They are taking care of people with very complex needs, people who have multiple chronic conditions, who may have all kinds of varied living environments. A lot of the families are really dysfunctional and the aides have to deal with that, too. And they’re getting paid chump change, and it’s a travesty.”

Nationwide, home care workers — a category that includes home health aides as well as home care aides and personal care aides, who have less specialized training — average $11.52 an hour, and 45% of them who work full time are on public assistance, according to PHI, a research and consulting group focused on direct care workers.

The turnover rate, not surprisingly, is astronomical. As many as two-thirds of home care workers leave their jobs, their field or the workforce every year, and more than 4.2 million jobs will have to be filled from 2016 to 2026, PHI says.

Twenty-four-hour care is particularly grueling and isolating: long bouts of idleness, punctuated by spasms of disorder and intimate struggle. Home care workers are typically offered little support or counseling on how to deal with the stress or process the grief.

“All they tell you is, ‘Don’t get attached to the client,’ ” Marjorie said. “But how do you prevent that? If you have a heart, how can you not get attached?”

In some ways, taking care of an Alzheimer’s patient is like parenting a 170-pound toddler. In some ways, it is like being married to one.

Yet many aides who stick with the job consider it a calling.

“This job, it is total, it is total demand,” Marjorie said one day. “Sometimes they don’t pay you what they should, but you know what, I don’t know what the end of my time is going to be like. I believe that what goes around comes around, and I believe in distributing love equally and fairly.”

A busy day

Bob is a retired sanitation and boatyard worker from the Bronx. His white hair is going wispy, but he is dimpled and handsome in a Popeye sort of way. Four years ago, he was living on Long Island with his girlfriend and started to get forgetful and belligerent. She left.

His son and daughter moved him to Stamford, Connecticut, near them, and installed him in a modest house on a quiet side street. He had an aide four hours a day, then six, then eight, then one night in January at 5 a.m. a neighbor found him wandering the block.

He was put in a nursing home — $400 a day, but it didn’t seem like adequate care.

“They were trying, but they were overwhelmed,” said his son, Robert Dettmer, a doctor. He contacted a home care agency, Helping Hands. “Luckily, Marge was the first person they sent to us, and she was good.”

Bob’s son and daughter agreed to allow a reporter to spend time with their father and Marjorie.

Marjorie is 58, with a broad face, high cheekbones, merry eyes and an easy laugh. She emigrated from Jamaica, lives in Crown Heights, Brooklyn, and has been an aide for more than 20 years.

When she arrived, she said, she had to hide Bob’s shoes, lock the garage and block the doors to keep him from running. He had urinated everywhere; the whole place stank. It took her weeks to get the house and Bob under control, to instill some semblance of order and routine.

Just before lunch, Marjorie was making herself a cup of tea when she decided that Bob had been too long in the bathroom. She went to check.

“Why you lock the door? Open the door, Bob.” Her voice was tense.

“I’m doing stuff,” Bob called through the door.

He finally unlocked it. Marjorie put on purple latex gloves and grabbed a plastic bag, opened the door and turned away wincing.

“I’m going to be busy,” she said.

Bob was on the chair in the tub in his shirt. The bath was running. Marjorie washed Bob off and took his pants and diaper to the washer and dryer in the garage. She transferred the day’s first set of bedding from the washer to the dryer, and put the diaper in a trash can by Bob’s old motorcycle and the pants in the washer.

“Every time I try to fix myself something to eat or drink, he’ll do this,” Marjorie said.

She threw out her purple gloves, put on clear gloves and mixed tuna and mayonnaise and relish, and put four slices of white bread in the toaster. Bob wandered off.

“Bob, where are you? Lunch is ready. Bob?” She went down the hall. “Oh, Jesus.”

Bob stood in the bathroom. He had soiled himself again.

Marjorie asked Bob to step back so she could clean him.

“Oh, you’re stupid,” he replied.

“Don’t be mean,” Marjorie said sternly. “I’m taking care of you.”

No time to sleep

All day, Marjorie switches hats: good cop, bad cop, kindergarten teacher. “In this field, you have to use a lot of psychology,” she said. “The worst thing I can do is fight with a sick person. The fire blaze, you have to be the extinguisher.”

Not all home care workers are particularly dedicated to their clients. Marjorie said she had met plenty who do the bare minimum, clock in their time and go home. Some of the millions of elderly Americans abused each year are mistreated by paid caretakers.

And many aides have been hurt or assaulted by the people they care for.

“I’ve met with more than 200 home attendants who work 24-hour shifts,” said Carmela Huang, a Legal Aid Society lawyer who represents 24-hour aides in their wage struggles. “I ask them if they typically get five hours of uninterrupted sleep, and I can count on one hand the number who have said yes.”

The head of the home care industry’s leading trade group agrees that the situation is a mess. William Dombi, president of the group, the National Association for Home Care and Hospice, said that while home care workers are badly underpaid, some measures aimed at addressing the issue cause other problems.

The federal law that entitles home care workers to overtime pay means that most companies try to limit workers’ hours to 40 per week, which has accelerated the worker shortage, Dombi said.

Dombi’s latest headache is President Donald Trump’s new immigration rule denying green cards to people considered likely to go on public assistance — a group that includes many home care workers.

In her ample empty hours, Marjorie sometimes thinks about the life she doesn’t have.

“Usually in the summer I go party, a lot of barbecues, gospel boat rides or reggae,” she said. She loves her apartment in Brooklyn but rarely sees it. She sees her 2-year-old grandson even less.

Her phone is a lifeline, but double-edged. “Last night, my friend texts me, telling me a cruise is coming up, what are you doing? I didn’t answer.”