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On the Job, 24 Hours a Day, 27 Days a Month

STAMFORD, Conn. — 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.”

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 percent increase in home care workers in the last 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 percent of them who work full time are on public assistance, according to P.H.I., a research and consulting group focused on direct care workers.

In the New York region, inflation-adjusted wages for home health aides actually fell from 2007 to 2017. In New York, one of the most expensive cities in the country, the 91,000 full-time home care aides earned an average of $27,000 in 2017, according to the city Department of Consumer and Worker Protection.

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

Bob shuffled into the dining room. He had looped the drawstring of his sweatpants around the back of his head like a suspender. He sat heavily at the table and wolfed down his food. He got up and looked lost.

“You O.K., Bob?”

“Yeah,” he muttered. He settled in the chair by the deck, got up, plopped down on the living room couch, put his feet up, laced his fingers and stared down at them. Marjorie cleared the table.

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, Conn., 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. She is a freelancer, affiliated with Helping Hands.

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.

His pants were on the floor along with a diaper full of loose stool. Marjorie washed Bob off and took the 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.

Bob sat on the couch looking down at his hands. “He’s embarrassed,” 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.”

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, of course. Marjorie said she had met plenty who do the bare minimum, clock in their time and go home. And some of the millions of elderly Americans abused each year are mistreated by paid caretakers.

For a while, Marjorie had it relatively easy with Bob: He rarely interrupted her sleep more than once a night. Now he gets up three or four times, so Marjorie does, too.

Many 24-hour aides care for people who must be turned or repositioned every two hours. “It’s written into their formal care plan,” said Carmela Huang, a Legal Aid Society lawyer who represents 24-hour aides in their wage struggles in New York.

In New York State, round-the-clock aides are paid for only 13 hours, because they are presumed to get eight hours off for sleep and three hours for meals. Aides are also supposed to get five uninterrupted hours of sleep.

“I’ve met with more than 200 home attendants who work 24-hour shifts,” Ms. Huang said. “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.”

These sorts of contradictions are built into just about every level of the system. Home health aides were not even covered by federal minimum-wage law until 2016, though they have been required since 1989 to complete 75 hours of training.

Long-term care by home health aides is covered by Medicaid, but state Medicaid programs reimburse home care companies so poorly that they typically cannot pay decent wages.

In 2017, a New York appellate court ruled that aides working 24-hour shifts must be paid for 24 hours. But the state’s Labor Department declared an “emergency” and reinstated the 13-hour rule to “prevent the collapse of the home care industry.” Last spring, the state’s highest court upheld the rule.

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, Mr. Dombi said.

Mr. Dombi’s latest headache is President 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.

“It is terrible that Medicaid recipients include people who care for Medicaid recipients,” Mr. Dombi said.

Marjorie is paid out of pocket by Bob’s family — all told, they pay over $75,000 a year for his home care — and on the private market, some aides do make more. “But the fact is that Medicaid sort of sets the standard,” said Ms. Stone, the LeadingAge researcher. “It’s just the way our system has evolved. Most people are not going to pay a heck of a lot for an aide.”

After lunch, Bob took a nap. Marjorie cleaned the kitchen. The laundry went round in the dryer. Marjorie sat on her bed — a mattress atop a foldout couch — and talked on the phone to a friend.

After an hour and a half, Marjorie woke Bob so he wouldn’t be up all night. He started doing slow laps around the house — living room, dining room, kitchen, bedroom. Then he lay down.

“Bob, you’re not going back in bed, you know that.”

“Well, where am I going to go?”

“You’re going to go back to the living room.” He flopped on the couch and pulled the blanket over his head.

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.”

Marjorie left Jamaica with her three sons in the mid-1990s to work as a health aide in New York. She got certified as a nursing assistant — in New York, they make about $5 an hour more than home health aides — but she hurt her back in a fall at home, and the job can require working with immobile patients. So that was that.

Most of her career she has done hourly work, going home every evening. But for now, her agency offers only live-in jobs, and there is just Marjorie and Bob, locked in a slow-motion dance choreographed to the rhythms of dementia. When she is not actively attending to Bob, she is coexisting with him, and that is draining in itself.

“Live-in is like your life is on hold,” she said.

In the evening, it started to rain. Marjorie boiled water for pasta.

“Bob? Dinner is ready, baby.” They sat across from each other. Marjorie sprinkled Parmesan on Bob’s spaghetti. He twirled some onto his fork with a bit of panache.

“You like it, Bob?” He nodded, mouth full.

“You’re a good boy today,” Marjorie told him. “You’re always a good boy, right?”

After dinner, Bob sat on a stool in the kitchen and laid his head on the counter. He got up, sat at the dining table, got up, crossed to the couch, returned to the kitchen and rapped loudly on the counter with a silver pinkie ring that says “biker.”

“Where’s the dessert?”

“Bob, it’s not time for your dessert. You get dessert like 9 o’clock, sweetheart.”

“Aw come on, Diane,” he said, calling Marjorie by his ex-girlfriend’s name. “She would have had everything on the table by now.”

She opened a bag of Jordan almonds and counted six into his hand.

“This is a big treat,” Marjorie said. Bob is diabetic. “Are you happy? Here’s another one. Makes seven.”

Marjorie bent and checked Bob in front and back. “He’s got a lot of urine in there, but he’s not leaking yet.” She checks every two hours.

Marjorie scrubbed the pasta pot. “I’m so exhausted. Real exhausted. You have no idea.”

Anyone who does this job for a while has combat stories. On a case on Long Island, Marjorie opened the refrigerator to find a feces-filled diaper. She told the client he could not put his diapers there. “What are you going to do about it?” he yelled and punched her in the chest.

Marjorie’s friend Trevor Allen, who lately has been taking care of Bob on Marjorie’s days off, said sometimes an agency sends an aide to care for someone without mentioning that the spouse has issues, too.

Last year in Middletown, N.Y., Mr. Allen said, he was assigned to a stroke victim. The man’s wife had Alzheimer’s. Every day, she would pull out all the pots and pans and food and barricade him out of the kitchen and scream.

“She wasn’t even my client,” he said. “It was a miserable situation.”

Marjorie fetched the laundry and folded Bob’s clothes. Bob cursed at her from down the hall.

“Be nice,” Marjorie said. “Don’t burst my bubble, Bob. Be a nice Bob.”

By the time Marjorie got Bob to bed, it was past 10:30. She’d been up for nearly 19 hours.

The next morning, she pushed Bob’s door open and he was staring at the ceiling.

“I’m tired!” he said angrily. Marjorie praised him for sleeping through the night and went to make Jamaican porridge.

She pulled out her phone and said she’d been thinking of subscribing to a meditation app. “Something while I’m here, to relax,” she said. “Inner peace and all that stuff.”

Bob entered the kitchen, diaper soaking wet. Marjorie took him to the bathroom to clean him up.

“Come out here so I can dry your back,” she said. “Spread your legs so I can dry it. You can sit on the toilet seat. I’m going to dry your feet for you.”

He raised his arms, and she daubed on deodorant, like a painter. She rubbed English Leather behind his ears. She worked a fresh diaper up his legs and got him dressed.

“You look nice now!” she said.

Bob was exhausted. He went back to bed and pulled the covers over his head.

“Sometimes he’s not living, he’s just existing,” Marjorie said. “What can you do? You just have to take care of them until they say goodbye.”

By July, Marjorie was near the end of her rope. Early one morning, she said, she went to change Bob and he raised his fist at her.

“You son of a bitch, if you touch me I’ll knock you out cold,” he roared, Marjorie recalled.

“I said: ‘Bring it on. I was raised with eight brothers and I raised three sons, you think I’m afraid of you?’”

She went to her room. She said she thought about cutting down to three days a week, but that felt terrible. She lay in bed and prayed for guidance.

The next day, Marjorie tried a new approach. “I went in there and I said, ‘Good morning, sunshine! It’s a beautiful morning! I’m going to give you some orange juice, and after that you’re going to take a nice shower, and after that I got a big breakfast for you!’” She has kept up the sweet talk ever since.

Somehow, she said, it pierced the fog. Bob grew more connected; his memory improved. He started changing his own wet diaper. Alzheimer’s does not get better in the long run, but for now, Marjorie said on a recent Thursday, “It’s like I can get through to him.”

The other day, she said, “He looked at me and said, ‘You’re a pretty woman.’

“I said, ‘Thank you, Bob, thank you.’ Made my day.”

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