This is a writing sample by “nycghostwriter,” AKA Barbara Finkelstein. It is “Homecare aides: The good, bad and ugly of aging in place,” published in the September 11, 2019 issue of Ami magazine. You can get professional ghostwriting services from a published non-fiction writer. Email me or fill out the short form on my contact page.
Just weeks ago, a 56-year-old Florida woman allegedly robbed Rella Herman, a 93-year-old Holocaust survivor, and her 91-year-old husband, of an estimated $100,000. The opportunity for theft escalated when the couple’s only son died, and the woman, the Hermans’ hired caregiver, used the money — much of it Rella’s restitution payments from the German government — for shopping sprees at supermarkets, restaurants and pharmacies.
“The loss of my dad sent Rella into a deep depression, after which she and Leonard rarely left the house,” says Micah, 41, the Hermans’ grandson, on the GoFundMe web page he created to help restore the couple’s financial losses. “They depended on their trusted caretaker to purchase drug prescriptions and groceries.” The woman used the Hermans’ credit card to buy gift cards, which credit card companies do not monitor, and intercepted the monthly statements so that the Hermans would not discover her fraud.
The Hermans’ encounter with an unscrupulous homecare aide is only one horrific example of caregiver abuse in a U.S. homecare system that is almost entirely unregulated. As more and more Baby Boomers cross the 65-year-old threshold, abuses such as this one will likely recur.
Indeed, dozens of homecare aides in Massachusetts, hired to care for the elderly and disabled, have already been brought to court for allegedly swindling clients out of their life savings, stealing their medications and even physically abusing them. “No one knows how common such incidents are because no single agency keeps track,” according to Linda Matchan, who has written extensively about the homecare industry for the Boston Globe.
Sadly, Matchan’s review of forty-seven documented criminal actions by aides in Massachusetts reveal incidents of theft (money, jewelry, flatware, medications), larceny, credit card fraud and forged checks, among other abuses. One aide, a 33-year-old American citizen, received a two-and-a-half-year sentence for stealing the $90,000 life savings from a 93-year-old woman. Many other offenders received probation or home confinement for a year or two. Other cases were dismissed after the victims died — and the alleged perpetrators went free.
In Florida, Rella and Leonard Herman’s aide was booked into jail in August and is out on bond for now. Her next appearance in court, however is slated for September 3.
The Hermans’ blonde-haired aide was among nearly three million people hired privately or through an agency to provide “personal assistance and healthcare support to older adults and people with disabilities,” as described by PHI, a national homecare policy group. Like half of all caregivers, she is female with no formal education beyond high school. While the home healthcare services industry generated $77.6 billion in revenue (2016) — the majority from Medicare/Medicaid funding, veterans programs and, to a limited extent, private health insurance — she most likely earned on average about $24,060 a year, or $11.57 per hour.
These data hint at a poorly vetted system that is matching an aging population with low-wage, low-skilled labor. Unlike the Hermans’ aide, much of the caregiving labor force consists of immigrant women from the Caribbean, Eastern Europe and African countries such as Ghana and Liberia.
What challenges do families face when a largely unmonitored homecare aide enters the home of an elderly or disabled loved one living for the most part on retirement savings?
Aides found through trial and error
Nearly every person I spoke with about their family caregivers reported many instances of caregiver misconduct — although none as egregious as the financial abuse enacted upon Rella and Leonard Herman. Alyssa Bergelson,* a 55-year-old Washington, D.C.-based computer scientist, for example, hired a series of aides when her 86-year-old Holocaust survivor mother came down with cellulitis, a serious bacterial skin infection, and C. diff, a bacterium that causes diarrhea and inflammation of the colon.
“When we were living in New York, I contacted a Lakewood, N.J. homecare agency, and fully expected to receive a trustworthy aide,” Bergelson says. “What we got was a series of incompetents with no training whatsoever.”
One per-diem aide simply never figured out what was expected of her and called Bergelson several times a day. “I had to go home and help her turn my mother so my mother wouldn’t get bedsores,” she says. “After a month of this, I had no choice but to fire her.”
Bergelson hired a live-in aide from the same Lakewood agency. “By the end of the first week, my mother had a urinary tract infection (UTI) and needed to be hospitalized,” she says.
The next live-in aide slept through the hour when Bergelson’s mother bumped herself up the stairs and acquired a gastric volvulus — a twisted intestine that led to a life-threatening bowel obstruction. “The whole point of having an aide was to avoid a catastrophe like this,” Bergelson says.
Even non-healthcare issues were problematic. Bergelson says her water bill rose from $140 to $450 a month. She took on all cooking duties herself because the aides could not adapt to the rules of her kosher kitchen.
“They all complained that they were bored,” she says. “But here I was stuck with aides who treyfed up my kitchen, created additional expenses for me and couldn’t do what they were hired to do.”
Despite her mother’s fragile health, Bergelson now relies on hourly aides from a homecare agency in Silver Spring, Maryland, where the Bergelsons relocated in 2012.
“The stability of my family’s life hinges on my mother’s next health crisis — and my ability to hire an aide I can trust,” Bergelson says.
A revolving door of aides
Daphna Amsel,* 62, tells a similar story about having to manage a team of homecare aides beginning in 2005 to care for her demented parents.
“I couldn’t understand the near-constant churn of aides coming and going,” Amsel says. “Nearly all of the aides were women from Jamaica or Trinidad, and I hired them from a homecare agency in Brooklyn. I got close to many of them. But why wouldn’t any of them stay longer than a few months?”
The first full-time aide the agency sent had every second weekend off. A new aide appeared to take her place. “As time went on, however, the first aide — who was on more medication than my mother — would find a replacement on her own,” Amsel says. “So now I wasn’t paying the agency. I became the direct employer.”
Or so Amsel thought.
“The replacement was a woman from Jamaica named Dorothy,” she says. “Dorothy ultimately became my parents’ primary aide. She was wonderful. She took great care of my parents. She learned everything about kashrut. As a Seventh Day Adventist, she felt a kinship with me because Saturday was her ‘Shabbat.’ Plus, she was interested in learning everything she could about homecare.”
After a few months, Dorothy announced that she had to go back to Jamaica. “She told me not to worry,” Amsel says. “She would find me another aide.”
Amsel observed what became a pattern of aides leaving, aides hiring replacements, and aides wanting their old job back. She learned that Dorothy and aides like her were essentially extorting a finder’s fee from their replacements.
“Does this sound like a rational system?” Amsel asks. “It wreaked havoc on my family, and on the aides themselves.”
Amsel discovered that so much of the aides’ availability was linked to their immigration status. The aides acquired a 10-year travel visa with the stipulation that they remain in the U.S. only six months at a time. Extending their stay past six months would result in the termination of their visa.
“In any case, the women had left families behind in Jamaica, and they wanted to see them,” Amsel says. “They leave Jamaica because they can’t earn enough to support their families, but at the same time they leave the people in the U.S. who have come to depend on them. Is this any way to run a homecare industry?”
A network of imposters and victims?
Daphna Amsel’s experience resonates with families in all fifty states. In southern New Jersey, for example, Batya Rothenberg,* director of nursing at a Camden County certified home health aide agency, reports that aides routinely swap shifts with other women, most of whom have no training or experience in homecare.
“About a month into my job, a new live-in aide named Teryn called the office and complained that she did not know how to use a particular piece of equipment, and she was going to leave the client’s home,” Rothenberg says. “I told her she could not abandon a client without putting her certification with the Board of Nursing in jeopardy. (Agencies in New Jersey that employ aides are regulated by the Division of Consumer Affairs, and the aides themselves are regulated by the New Jersey Board of Nursing.) I jumped in my car, drove to the residence and instructed the aide on how to use the equipment.”
Fast forward several months and Rothenberg received a late-night call from one of her on-call staff people. “She told me that she got a call from a new client who fell,” Rothenberg says. “The on-call asked to speak to the aide, whom she naturally assumed was one of our own certified home health aides. She got suspicious when the aide was reluctant to speak with her. When the aide finally got on the phone, the on-call realized the woman was not the aide we sent.”
Rothenberg instructed the aide to call the police. She and the on-call both drove out to the client’s residence.
“The police were already there when we arrived,” Rothenberg says. “And so was Teryn, the aide I had instructed on that new piece of equipment several months back. I was shocked. She was not employed with my home health agency and, as I learned, never had been. She had no identification on her — identification being a core New Jersey state requirement for employment as a certified home health aide. Our legitimate employee had decided on her own to have a friend take her place. We terminated her employment with us and immediately reported her to the Board of Nursing.”
Meanwhile, Rothenberg called on another caregiver to replace the fraudulent one. The replacement stayed with the client until Rothenburg could arrange for a permanent live-in.
But Rothenberg was unnerved. “Our legitimate employee had been assigned to a half dozen or more clients during her employment with us,” she says. “How many times had she duped us? How many other agencies does she work for? Is there an entire network of imposters — uncertified aides not regulated by the New Jersey Board of Nursing — out there potentially causing harm to clients?”
Rothenberg says she does not know what the Board of Nursing ultimately did with the certified home health aide who got Teryn to replace her for the evening — or possibly longer. Her company did institute a policy, however, to mitigate the possibility of another “Teryn fiasco:” An agency nurse introduces the client and caregiver to each other. Any other aide who shows up is not a legitimate employee.
“Still I cannot tell you how many nights I have lain awake at night, wondering and worrying how many other imposters and victims are out there,” she says.
A model aide: An exception to the rule?
“Misconduct is always a risk when you have someone come into your home,” says Amy Goyer, family and caregiving spokesperson with the Association of American Retired Persons (AARP). “You do have to be careful. But negative incidents should not deter you from getting your loved ones the care they need. Especially because the vast majority of people want to stay in their own home as they age.”
Like Daphna Amsel, who eventually hired a compassionate Jamaican aide to care for her mother in the last three years of her life, my own parents finally lucked into an excellent homecare aide through a caregiver agency. Much credit also belongs to Jewish Family & Children’s Services of Southern New Jersey, which supports family and caregiver with compassionate social workers and registered nurses.
Cicely Kwaku* comes from Ghana, a West African country bordering on the Gulf of Guinea, perhaps best termed an “emerging economy.” Annual income ranges from US$11,495 for a doctor to US$18,543 for a software developer. While I could not find a figure for “homecare aide,” the median monthly income in Kumasi, Cicely’s home town, is 5,692 GHS, or about US$1,044.10. For financial reasons, Cicely and her husband made the hard decision to have Cicely work as a homecare aide in the U.S. The money the two of them made was not enough to support their daughter and three nieces and nephews they adopted after Cicely’s sister died.
Even without comparing her to the indifferent — and occasional thieving — homecare workers that preceded her, Cicely brings an attitude of professionalism to her work. In the last six months of my father’s life, she got him washed and dressed every morning. A devout Christian, she helped put on his tallis and tefillin, and opened his siddur to shacharis. My father, whose ability to speak had become compromised by diabetes, congestive heart failure and renal disease, never failed to say thank you. Cicely took his gratitude to heart.
Once my father was taken care of, Cicely went to work cleaning the house — a job mostly left to my mother until two years ago when she was 88 years old. This is no comment on my mother’s abilities, but the bathrooms and kitchen had never been cleaner, the house never neater or more organized.
When my father died on June 12, I found Cicely sitting on the living room sofa, bereft. She had formed a bond with him full of winks and raised eyebrows. She was every bit as stunned as the rest of my family.
Now and then Cicely and I have open-hearted conversations, although neither one of us pries into the other’s life. She loves her country. She misses her family and, in fact, speaks animatedly via WhatsApp to her children every day. When she isn’t cleaning or doing laundry, she stays in her room. She sings Christian hymns, mostly, I think to keep her spirits up. On Friday night, she gives us wide berth to observe Shabbos. In the morning, before she walks my mother to shul, Cicely puts on a dress made of brilliant tribal fabric and finishes off her look with an intricate black hairpiece. In shul she reads the English translation of the siddur and chumash. She emanates respect and self-respect.
By 2050, the population of people over the age of 65 will nearly double, from 47.8 million to 88 million, according to policy adviser PHI. Will millions of elderly people have to depend on luck to find an aide as qualified as Cicely?
Social and financial realities of a fractured system
Aging in place — the preference for most Americans — will place a burden on the homecare aide industry to supply enough aides. As of now, the chief obstacles are availability, due to increasingly restrictive immigration law, and the economics of home caregiving in the U.S.
“At the Jewish Family and Children’s Services of Southern New Jersey (JFCS), we have witnessed a trend over the past ten years for people to age in place, in their own homes,” says Gail Belfer, MSW, LCSW and director of Holocaust Survivor Services and Advocacy. “What many people do not realize, however, is that Medicare covers only a limited amount of homecare following a hospital or rehab stay. It does not cover long-term care at home. We do see a few exceptions, such as funding for Holocaust survivors or veterans of the U.S. military. Otherwise, homecare assistance is all private pay. You have to be destitute to qualify for any Medicaid coverage.”
“For people who do qualify for Medicaid, they most likely will not have the options they would like,” says Belfer’s colleague, Rebecca Rosenau, MSW, LCSW and director of 60+ Services at JFCS. “Not to mention that most people cannot rely on a single live-in provider to bathe them, drive them to doctor appointments, cook for them, pay their bills and be their companion.”
A further obstacle to in-home care centers on a core actuarial reality: People are living into their eighties, nineties, and sometimes early hundreds. Many of them have not saved enough for a thirty-year-long retirement.
“Moreover, people across the generations used to live in the same neighborhood,” Belfer observes. “A lot of adult children are not living right down the block from their parents. As for suburban communities, getting to a supermarket or a doctor’s appointment when you are too old or sick to drive becomes a serious logistical problem.”
It is a costly business, Belfer says, to be taken care of at home. (See sidebar for Belfer and Rosenau’s “5 Tips For Finding a Reliable Homecare Aide.”)
“This is where I go back and forth in my own mind,” JFCS’s Rosenau says. “Is it better for my loved ones to stay in their own home, or would they be better served in an institutional setting? I wish I had a cut-and-dried answer, but the answer is usually yes and no.”
The population of adults 65 and older is growing even while the number of potential homecare workers “will be considerably smaller from 2014 to 2024 than in the previous decade,” according to policy adviser PHI. “If the homecare workforce is to grow, jobs will need to be more competitive, offering higher wages and improved working conditions.”
Where will those “higher wages” come from? Will “improved working conditions” mean paid vacations and scheduled breaks for workers that most housebound elderly cannot afford? With restrictions on the flow of immigration becoming tighter, will the supply of aides like Cicely Kwaku, who have made homecare an honorable calling, ever meet the demand for them? Or will the housebound elderly face the sort of abuse meted out to Holocaust survivor Rella Herman?
Rationalizing a system that’s off the rails
Virtually every industry in the U.S. — from petroleum products manufacturing to water transportation — submits to rigorous regulatory oversight. While it is true that corporate entities grumble that regulation impedes growth and consumers push back with demand for supervision, permitting a homecare industry to operate in Wild West mode does not serve families, aides or the social fabric safely or wisely. We need to see a social infrastructure that helps families get the caregiving help they need.
When the Affordable Care Act was made law in 2010, for example, New York State made healthcare marketplace counselors available via phone consultation. A comparable counselor in a rationalized homecare system could help families understand what to look for in an aide.
“It’s helpful to have someone who is a geriatric care manager or an aging life care specialist,” says AARP’s Amy Goyer. “Even today you can go on the Aging Life Care Association website and look at listings of people who perform the case management role, and who insist on the kind of 360-degree care the elderly need.”
In a rationalized homecare system, certification and periodic recertification for aides in every state would be a must. As evidenced by the homecare examples in this story, regulation of aides varies state to state. Aides who work for organizations that receive funds from Medicare or Medicaid must complete formal training, while those who work for private companies do not have to meet any specific obligations.
As for families struggling to meet the financial demands of aging in place, they would benefit from state income tax credits. Indeed, lawmakers in several states, including California, Arizona, Wisconsin and Rhode Island, have proposed legislation that would alleviate the financial burden of hiring live-in homecare aides.
Absolutely avoiding every catastrophe like the one Rella Herman and her husband experienced is impossible. Bringing care and compassion to a damaged homecare system should not be. Our parents deserve at least that much.
Upon interviewees’ request, we did not use their real names
