Devyani Dave immigrated from India to California in 1995 in her early 60s to live near her son and his family. Her green card was sponsored by her son (who prefers not to reveal his name), a citizen who came to the U.S. in 1973. When Dave arrived to start her new life, she had no health insurance and relied on her son to support her. Now, sitting on a bench at Priya Living, a senior community facility in Santa Clara, Calif., Dave said she feels fortunate to be in close proximity to her only child, especially as she ages.
Devyani Dave immigrated to the U.S. in 1995 to be near her sonBut some immigration experts say the Trump administration’s new “public charge” rule, going into effect by the U.S. Citizenship and Immigration Services on February 24, 2020 nationwide, will no longer welcome people in similar circumstances as Dave. That’s because, the analysts say, it will deem them likely to become liabilities for America.
How the Public Charge Rule Will Change
Since 1999, federal immigration law has had a public charge test in place to deny people admission to the United States if the government identifies them as ones who may be "primarily dependent" on the government for support, either through cash assistance programs or long-term institutional care.
But the Trump administration is altering the definition of public charge. Under the new rule, any person who uses designated benefits for 12 months in any 36-month period might be considered a public charge. And the list of benefits has expanded to include Medicaid, Supplemental Nutrition Assistance Program (SNAP, formerly known as Food Stamps) and Section 8 housing assistance.
The “totality of circumstances” test will penalize people 62 years or older, making it “nearly impossible for older adults to pass the 'public charge' test under the new criteria.”
A public charge determination will be made at the time of applying for a green card or admission at the U.S. border by an immigration officer after considering a “totality of circumstances,” a discretionary weighting system looking at factors including age, health, family status, assets, education and skills.
The “totality of circumstances” test will penalize people 62 years or older, said Natalie Kean, senior staff attorney at Justice in Aging, a nonpartisan legal advocacy group addressing senior poverty, making it “nearly impossible for older adults to pass the 'public charge' test under the new criteria.”
Immigrants Who Might Be Most Affected
Kean and other immigrant analysts say the revised public charge rule will tilt negatively for immigrants with chronic health conditions or disabilities; those who are not fluent in English, and ones earning less than 125% of the federal poverty limit — that’s $21,138 for a two-person household.
With these stringent benchmarks, the new rule could have an outsize impact on low-income older immigrants of color, preventing some from becoming legal permanent residents in the country they live in or aspire to live in.
This will have “a ripple effect on their families who are here in the United States, as well as our communities in general,” said Kean.
When the Supreme Court ruled on January 27 to give the Trump administration the go-ahead for its public charge rule, a statement from the White House Press Secretary called the decision “a massive win for American taxpayers, American workers and the American Constitution.”
In a fact sheet promoting the new public charge rule, the White House cited a 2017 poll from America First Policies (a pro-Trump organization) saying that 73% of Americans favor requiring immigrants coming to the country to be self-sufficient.
Critics of the new public charge rule, however, say older, poorer immigrants will be harmed by it. In an amicus brief filed by Justice in Aging and others to contest the new rule, one of the arguments points to the situation of five million older immigrants who "are likely to have supported their families, have contributed to our nation's economy by, for example, paying taxes and contributing to Social Security, and have been integrated into the fabric of our country. Yet, under the Final Rule, they will be viewed as having failed to contribute to society."
What Older Immigrants Say About the Public Charge Rule
“That’s not fair!” exclaimed Losa Petela, a 60-year-old legal immigrant from the South Pacific archipelago of Tonga who lives in Fremont, Calif. and has worked as a home caregiver in the Bay Area for nearly 10 years. Citing her own example, Petela said that immigrants who’ve served their U.S. community well, even if they are older, should be allowed to get their green cards.
“Those whose children are contributing to the [United States] for so many years and who don’t have anyone left in India should be allowed to join their families.”
Praveen Thakur, 79, a U.S. citizen who came here over 50 years ago from India and lives in Santa Clara, Calif., takes a slightly different view. “If the children take full responsibility [for their parents], then older parents should be allowed to come and get a green card so that they can stay with their families,” he said.
Dave makes another distinction: “Those whose children are contributing to the [United States] for so many years and who don’t have anyone left in India should be allowed to join their families,” she said.
Spreading Fears About the New Changes
Fears about the implications of the new public charge rule are spreading.
“We know that health care providers and social service agencies across the country are already starting to get calls from concerned individuals asking whether or not it is safe to remain enrolled in health, housing and nutrition programs,” said Madison Allen, senior policy attorney from the Center for Law and Social Policy, a nonpartisan nonprofit working on policy solutions for low-income people.
This chilling effect caused by confusion as to who, or what, will be subject to the public charge test has resulted in some legal immigrants disenrolling from public programs even before the February 24, 2020 official start date.
The New York City Department of Social Services has said that in 2018, roughly 11% of the city’s non-citizen immigrants “who are eligible for and lawfully receiving SNAP benefits have either left the SNAP caseload or have decided not to enroll, at a higher rate than U.S. citizens in the program. The agency cited a correlation between this decline in enrollment and the public charge proposals, due to a “fear of potential immigration consequences.”
Democrats' Bill to Curb the Trump Administration's Plans
Congresswoman Judy Chu, a Democrat representing communities near Los Angeles, said at a Jan. 31, 2020 press briefing: “By keeping families apart, Trump is making it harder on immigrants to succeed.” Last year, Chu introduced the No Public Funds for Public Charge Act, which would prevent federal funds from being used to implement the new public charge rule. The bill has 118 Democrat co-sponsors from 34 states and no Republicans.
“We are in a wait and see period right now,” said Denny Chan, a senior staff attorney at Justice in Aging. Arguing that the new public charge rule unlawfully targets older immigrants and their families, five briefs have been filed in circuit courts by organizations advocating for the elderly.
“It’s going to be a lengthy process,” Chan said. Although the rule will take effect on February 24, a circuit court could grant an injunction blocking it.
Older immigrants who are worried about the public charge rule, Chan said, should “speak to an immigration attorney to get individualized legal assistance before they make any decision to access, or apply for, benefits.”


Why the New 'Public Charge' Rule Could Hit Older Immigrants Hard

Jaya Padmanabhan

This story is part of Taking Care, an ongoing series on the diverse lives of America's family caregivers, with support from The John A. Hartford Foundation."The TV doesn't work," my mother called out loudly. 
The author and her mother, Sarada Ramachandran, and the orchids at their home in Los Altos Hills, Calif.When I walked in to her room, she was standing in front of the television set with the remote in her hands. She raised her gaze to mine and her eyes were slightly moist. "I pressed the buttons like you told me, but it didn't work," she said. 
I took the remote from her, pressed 7-6-5, hit enter. The screen changed. 
"I've been trying to change that channel for the last fifteen minutes," my mother said plaintively.
My mother's gaze still always searches for me. In a roomful of people, she often notices only me.
In this year of shelter-in-place, my mother and I have had to refurbish and remodel our relationship — bouncing between helplessness, despair and buoyancy. Since late spring, each new day has forced on my mother and me a reckoning of how care is given and how care is taken, without a specific lesson for its resolution.
As a child, I never really had a deep or consistent connection with my mother. Most of my formative years were spent in a Catholic boarding school. Besides the impediments of language that developed, my mother and I had different interests, habits, tastes and beliefs. We had little to say to each other, other than the perfunctory. She was my mother; my love for her was wholly steeped in that relationship.
From India to California
When my father passed away, I packed up my mother's life in India and escorted her into mine in California. I was shocked to discover that she hadn't quite mastered the technique of crossing a busy Indian street, withdrawing money from her bank, ordering a new cooking gas cylinder or calling for a taxi. Yet, she read voraciously and displayed an irrepressible, gamine intelligence.
"Are you worried about living in America, Amma?" I asked her on the flight. "You're there," my mother responded, without a trace of anxiety.
The author Jaya Padmanabhan helps her mother down at their home in Los Altos Hills, Calif.In California, my mother began negotiating her new space the best way she could: through rote memorization. She learned to use a microwave by pressing the same buttons in the same sequence. She learned to operate a dishwasher and the shower in the same manner. She even got her citizenship this way — by memorizing all the questions and answers in the study booklet.
She took over the responsibility of feeding Mishti (our big, rambunctious goldendoodle) and watering the two orchids that were gifted to us over the years. Every morning, ritually, my mother would pour two cups of water into Mishti's bowl and an equal amount of water over the orchids. The orchids and the dog bloomed with her attention.
Time Went On, Needs Changed
The years passed. My mother's hearing deteriorated, and she refused to wear hearing aids, or anything "artificial" to compensate. Then her eyesight grew blurry and she lost peripheral vision. She had several small falls, and then, almost exactly a year ago, a catastrophic one on the hard stone floor, sustaining multiple pelvic fractures. She was hospitalized for several weeks. When she came back home, she gripped the handles of her new walker tightly in her hands.
I became my mother's caregiver, helping her with her showers, guiding her in figuring out her pills, organizing and preparing her meals, turning on her television, taking her for drives and downloading her favorite magazines onto her iPad.
Sarada Ramachandran turns on the television in her bedroom at her daughter’s home. "My mother began negotiating her new space the best way she could: through rote memorization," the author writes.I taught her the very same things I had taught her once before, a decade ago, but this time, the lessons did not stick. The challenge of handling household tasks that she had once effortlessly mastered became insurmountable.
My mother stopped feeding the dog. And for the first time in many years, the orchids looked thirsty.
I worried that the months of continuous quarantine would be isolating. They were. And her reliance on external stimulation gradually dwindled. 
Every day around noon, my brother calls our mother from Philadelphia. With her poor hearing, she is often eager to put the phone down as soon as she picks it up. Reading, too, has become intermittent. It takes too much effort to focus, my mother told me.
"There's no other human being on this earth who will ever have our backs like Amma does," my brother said, consoling me when I was in a low mood. "It's an unwavering trust in us," he said, and I was reminded of her words on that flight from India.
'A Brand New Understanding'
I hired a caregiver for a few hours a week to help her and keep her company, but my mother's gaze still always searches for me. In a roomful of people, she often notices only me.
My mother's dependency is often overwhelming. I feel like I am always on alert, day and night, listening for her to call out my name.
Mishti passed away in late August, and my mother's distress wrapped around my devastation at the totality of his absence.
With each new day, the gyre of her reliance on me seems to widen. "What should I eat for dinner?" "Can you turn the knob on the humidifier?" "Which day is it today?" "Should I sleep now or later?" "Will my stomach ache go away?" "Are you going out?" "When will you be back?"
My mother's frailty and vulnerability have disarranged her life, and mine. Yet this very disarrangement has forged a brand new understanding upon me; upon us. Our relationship will always be an imperfect one, but it rests on the twin pedestals of her trust and my caring.
Now if I can only convince her to water the orchids again.


Now That I Care For Her, I Feel For Her

“Do you have drumsticks?” my 85-year-old mother asks the cashier at the checkout counter at Madras Groceries in Sunnyvale, Calif.
The woman points to a pile of long, narrow, cylindrical vegetables near the counter. A half-hour later, a quick inventory of my mother’s cart reveals drumsticks, taro roots, squash, long beans, okra, winter melons, pointed gourd, snake gourd, spices, snack packets of murukkus and a bag of brown basmati rice.
Food bought, cooked, served and eaten is collectively the barometer of my mother’s moods, which are intricately entangled with her health. When she’s bustling around the kitchen, cooking sambar, kootuor olan with squash and winter melon, and boiling snake gourd or sautéing long beans to serve as a side dish, she’s cheerful and animated. On the days when the stove top stays cold, she sits near her bed dispiritedly, complaining about the insipid flavors of leftovers.
My mother, who immigrated to America in her late 70s from India, views the world through the lens of food. The act of eating or drinking is not only one of survival; it’s an emotional configuration. She is happiest when she has access to the foods she once ate back home, as though harnessing the taste of her memories.
The act of eating or drinking is not only one of survival; it's an emotional configuration.
She has never tried pasta, pizza, burritos, sandwiches or salads. Vegetables she has not encountered in her previous life are anathema, including mushrooms, broccoli or Brussels sprouts. She keeps a very close, if obsessive, vigil on her Indian vegetarian palate.
Preoccupied With Food
Gopala Pillalamarri worked as a journalist for 40 years in India before retiring and moving to Palo Alto, Calif., to live with his son and daughter-in-law in the 1990s. Now in his 80s, Pillalamarri has a long list of ailments and is confined to his room in his son’s house, needing round-the-clock palliative care.
When I met him, he was glancing over headlines in the local newspaper. A frail man, wearing a crisp white-striped shirt, he brightened when he saw me. “A daughter has come to visit,” he announced.
Pillalamarri grew up in Tenali, a city in Southern India, well-known for its spicy foods and pickles marinated in chilies. Until he came to the United States, he had never lived anywhere else.
“Have you ever tried pizza?” I asked Pillalamarri. “No western [food] for me,” he said, shaking his head with a mischievous smile. “It has no spice.”
Rita Ghatak, a psychologist and an associate director at the Optimal Aging Center in Palo Alto, is Pillalamarri’s daughter-in-law. With over a decade of experience directing Stanford’s Adult Aging Services program, Ghatak has observed that among immigrant families, one of the biggest preoccupations is food.
She noted that her father-in-law’s “food habits have not deviated, not even one standard deviation, from what they were when he was living in India.”
For many adults who migrate later in life, familiar foods close the gap between countries left behind and countries arrived at. Remembered flavors stave off a fugue-like state of withdrawal from the new environment. So tastes are preserved carefully.
When Pillalamarri had a nasty fall and had to be admitted to ManorCare Health Services in Sunnyvale to recuperate, he begged to be taken home. He couldn’t tolerate the hospital fare and looked listless and unhappy until his son began to cook and deliver meals to him every day.
The Link Between Cultural Isolation and Food
Globalization and immigration patterns are changing the makeup of older adults in America. As America ages, so does the immigrant population. By 2030, older adults will outnumber children. In 2010, more than one in eight adults 65 years and older was foreign born, according to the Population Reference Bureau.
The Migration Policy Institute reports that in 2010, California had the most foreign-born older adults (1.3 million) in the country. It is predicted that people of color, primarily Latinos and Asians, will make up 55% of California’s older population by 2035, compared to 41% today.
This changing population requires a rethinking and recalibrating of how we deliver elder care. While there is much research on older adults and social isolation, not much attention is paid to the issue of cultural isolation, and, in particular, its linkage to food.
Despite the lack of research, however, nutrition programs in California are aware of what it takes to satisfy older immigrant adults.
Milton Cadena, the program director at the Eastside Neighborhood Center in San Jose (a Senior Nutrition Program, or SNP, site run by Catholic Charities), said it mostly has Latinos in its program and that many of its menu options tap into this group’s preferences — chile verde, corn tortillas, Spanish rice, chicken enchiladas and more.
“When the food served at our centers mirrors the food [the clientele] grew up with, or are accustomed to, in their own culture, it is easier for them to accept it, and they appreciate it  —  and more importantly, do not waste it,” Cadena said.
At Stevenson House  —  a low-income senior housing project in Palo Alto  —  La Comida (Spanish for food) mostly serves an older Chinese population. On a recent menu, however, there were few Chinese options.
“One of the challenges is preparing Chinese meals,” admitted Mary Ruth Batchelder, site manager of the La Comida program. The prep work is complicated. There’s a lot of braising and marinating, and the ingredients are different.
“We cook baked fish, which is Chinese inspired. One of the problems is keeping it low in sodium and soy sauce,” Batchelder said, adding that La Comida is incrementally working toward a Chinese-inspired menu. But “our food doesn’t keep Asians away,” she said, while pointing at the room filled with Asian diners.
According to Judy Chang, a member of the board of La Comida, immigrant adults are willing to experiment with cuisine if they’ve been in the country long enough. Or if getting and preparing hot meals is a problem. “If you have to have a full belly, then you go with whatever you get, as long as it’s not offensive to your palate,” Chang said, and for many of the La Comida patrons, this is the only hot lunch they get.
'I Don't Like American Food'
Nourishment is merely the outer skin of the peeling onion that explains immigrants' complex relationship to food. What works for the native-born population will not necessarily work for the immigrant cohort.
Fresno-born octogenarian Hank Thielmann, of Ukrainian-Russian origin, lives in Stevenson House. He described his mother’s twice-baked crisp zwieback bread with equal parts sadness and nostalgia. “I’d slather butter and jam on the zwieback before eating it,” he recalled. He likes the food served by La Comida. “I choose to enjoy it,” he clarified. “But if you know of any Russian restaurant?”
Patty May is 90, and her translucent skin gleams in the afternoon light. She sits at the entrance of the dining hall, handing out bread to the La Comida patrons as they walk in, murmuring greetings in Chinese and English. She grew up in Oklahoma City, but lived in China for 15 years and prefers Chinese food. Her favorite meal at La Comida is Lion’s Head Meatballs, a Shanghai specialty made of pork and cabbage, though she likes everything served.
Like Thielmann and May, many aging adults are nostalgic for the foods of their younger days. But adults who migrate later in life feel alienated if the cuisine they are accustomed to is not available to them.
Huiming Tang also lives in an apartment at Stevenson House. “I pay attention to my food. I take it seriously,” he said through an interpreter. “I like Chinese food. I eat it all the time. I don’t like American food,” he said firmly.
Chinese food has bold complexity, Tang said. Each province in China lends its own aesthetics to the food. “The noodles in Shanghai are different from the noodles in Canton or Beijing,” and there’s more meat and vegetables in Chinese cooking, he said.
Tang came to America in the late ’90s to live with his son and daughter in the Bay Area after retiring from his job as a professor at Shanghai University. He cooked his own meals initially. When asked about his favorite La Comida meal, Tang picked up his utensils and cut into the marinated pork loin on his plate before responding, “I come here because I’m 88-years-old.”
San Jose resident Aida Vigo came to America in 1992 after retiring as a physician in Bataan, a city in the Philippines where thousands perished in 1942 during a brutal Japanese-enforced 65-mile march to prison camps. Vigo was four-years-old at the time and calls herself a child of the war. She grew up at a time when privation and scarcity were ways of life. Most people she knew ate only the food that they raised, with fish and vegetables being staples.
Vigo prefers simple flavors and fresh ingredients. When she first arrived in the United States, she often cooked adobo and sinigang for her children and grandchildren, both stock-based “one-dish meals” with fish, beef, pork, chicken or vegetables.
Waiting for her food to be served at the Northside Community Center near downtown San Jose, Vigo revealed why she comes here for lunch: “The cook here is Filipina. I know how she cooks it. The taste is not overpowering.”
Link Between Food and Socialization
Iggy Ignatius, chairman and founder of ShantiNiketan, a retirement community for Indian Americans in Tavares, Fla., is well on his way to building an empire on the simple premise that as immigrants age, they will want comfort food and a back-to-the-roots lifestyle. He is on his third phase of development, to be completed next year. The demand is so high, Ignatius said, that he’s begun to expand to other locations, including New Jersey, Houston and even Singapore. “The market will only grow,” he assured me. He has several California customers.
The biggest selling point is the Indian vegetarian food that ShantiNiketan offers, one of the few Indian-American facilities for older adults with an in-house kitchen. Ignatius believes that affinity retirement homes are not non-assimilative, but places where people go to spend their later years among people who share the same kinds of life experiences and are able to relate to each other.
That relational experience boils down to food and socialization. Ignatius echoed Ghatak’s theory on older adults and their preoccupations: “Food is the major concern for Indian-Americans, in my opinion, and then comes socialization,” he says.
Familiar Scents and Array of Colors
For my mother, who cooks for herself, food is a pipeline to her emotional and physical health. But I can see that her cooking days are numbered. Shopping for her favorite vegetables has begun to exhaust her, even though it’s her favorite place to go. My mother in an Indian grocery store is like a child in a candy store. Her eyes dart from shelf to shelf, taking in the familiar scents and array of colors. And she looks energized.
After paying for the groceries at Madras Groceries, my mother and I make our way a few doors down to Madras Café.
“How are you, Aunty?” the young man at the counter greets my mother when she steps forward to order a plate of vadas (deep-fried lentil balls) and chutney to take home. It’s one of the few restaurants my mother consents to eat at, and I soon discover why.
“I haven’t seen you in a while,” the man says in Tamil. My mother nods shyly without responding. As I help her to a chair, he goes in and comes back carrying a steel tumbler of steaming coffee. “While you wait,” he says, offering it to her.
My mother takes a sip of the coffee and looks at me, her eyes shining.
This article originally appeared on The Bold Italic and on the Diverse Elders Coalition blog.


Immigrants Take Comfort in Food From Their Homeland

It’s American culture to value productivity above most else. Filling schedules to the brim and working long, late hours elicits praise and respect, while carving out time just for fun or self-care isn’t viewed with as much admiration. It’s a career-over-everything mentality, and when we tie so much of our self-worth to our jobs, we tend to structure any free time around not what brings us joy, but what we could do to increase productivity even more. If this sounds familiar, you might have never pursued a hobby — whether for lack of time or not seeing its purpose. Too bad. It's great to have a hobby.
Writer Jaya Saxena recently forgot the word “hobby.” While telling friends about her spouse’s new venture playing in a band, she used a roundabout way of describing a hobby, but forgot that a word already existed to describe it. Hobbies, sadly, have become more of a rare phenomenon.
For Many, Hobbies Are a Thing of the Past
“For many of us, expectations of an ‘always-on’ working life have made hobbies a thing of the past, relegated to mere memories of what we used to do in our free time,” Saxena wrote for The New York Times. “Worse still, many hobbies have morphed into the dreaded side hustle or as paths to career development, turning the things we ostensibly do for fun into … more work.”
It’s true. Admittedly, Next Avenue has run plenty of advice on turning hobbies into sources of income. It’s a popular way of bringing pleasure to work, and in theory it makes perfect sense to monetize your skills. There’s nothing inherently wrong with merging work and hobbies, but what do we lose when we see our hobbies through a work lens? The beauty of a hobby is its low-stress, low-pressure, low-stakes nature. Maybe some hobbies should stay sacred — for enjoyment only.
“Hobbies can also remind you that work isn’t everything,” Saxena wrote.
Have a Hobby for Leisure, Not Work
Saxena highlighted a 2009 study that found a focus on leisure activities “correlated with lower blood pressure, lower levels of depression and stress, and overall better psychological and physical functioning.” Hobbies are a way to recover from stress, too, and give you the opportunity not only to regroup but to bring your best self back to work.
If you’re hung up on taking too much time away from work and productivity, know that studies have also shown that time spent on hobbies can improve job performance through improved creative problem solving and helping others on the job.
Hobby Inspiration
Feeling stumped about what you’d like to adopt as a hobby? Just think about times you’ve thought or said, “I’ve always wanted to try that.”
Maybe it’s taking up photography, baking or camping. Looking back to your childhood interests and passions is another great place to start, as Next Avenue has encouraged in the past.
“If the inevitable ‘What do I do with the rest of my life?’ question has you perplexed, you may benefit from revisiting who you were as a child and what you loved to do,” Saxena wrote. “In those dusty storage boxes filled with your childhood keepsakes — report cards, photos, artwork, news clippings, coloring books, prize ribbons, toys and other artifacts — you may find clues for your tomorrow.”
Next Avenue also has published guides and examples of people exploring birdwatching, attending the opera, writing workshops, quilting, storytelling, tango and gardening.
One key final note about having a hobby: Perfection is not the goal. Hobbies are about trying new things and learning what you like (and don’t like) — not just being the best.


Why It's Great to Have a Hobby

Grace Birnstengel

In this series, Next Avenue will follow Patricia Wynn as she embarks on becoming an entrepreneur with her North Carolina lifestyle assistant business. Future installments will note her progress, with advice for her and for other midlife entrepreneurs.Entrepreneurs often begin with an idea and manage their new business alone — at least in the early stages of their startup. So, in essence, they are often "solo-preneurs" with hopes of possibly adding a few staff members as their business expands.
As part of her role as a lifestyle assistant, Patricia Wynn frequently does the grocery shopping for clientsFor Patricia Wynn's Hillsborough, N.C.-based lifestyle assistant business, gradual growth of her clientele means that she is still personally assisting clients, with occasional work overflow being handled by her brother and a cousin. Her goal is to eventually have enough clients to afford bringing in a few staff members, in addition to herself.
"Currently, I'm handling nine regular weekly clients with cleaning, cooking, or caregiving and household errands, plus two clients that I see every other week. They have all contracted with me, so they are accustomed to interacting with me. The only client that I've occasionally had my brother or cousin work for is an Airbnb, which is cleaned while it is empty, so there is no interaction with a specific client," said Wynn.
She continued, "When I am able to add new clients, if I also have a new staff member, I would need to introduce them to the client ahead of time, so the client knows who is coming to their home."
Early Stages of Being an Entrepreneur 
"This is always a kind of a delicate balance for entrepreneurs at the early stages: Making sure you meet your responsibilities to your clients and people you may bring in," said David Deeds, Schulze Professor of Entrepreneurship at the University of St. Thomas Opus College of Business in Minneapolis, MN., and editor-in-chief of the (EIX) Entrepreneurship and Innovation Exchange, which is a funder of Next Avenue.
Deeds confirmed that the challenge is real for new entrepreneurs as they allow time to manage additional staff as well as their own responsibilities at their startup business. Another key element, noted Deeds, when it comes to bringing on staff, is whether they are classified as W-2 employees or 1099 contractors, because the taxes withheld differ and so does the employer's control over their work practices.
"Taxes are places where businesses in startup mode can make mistakes." 
"Taxes are places where businesses in startup mode can make mistakes. They don't want to make the 1099 mistake, where they list a worker as an independent contractor who should have been listed as a W-2 employee. If they are actually an employee and don't pay taxes on the wages that you've paid them, then you as the employer can be liable for those taxes. You've got federal, state and potentially local taxes," said Deeds, who noted that often entrepreneurs prefer to work with independent contractors because payroll tax is not required.
Hiring Employees vs. Independent Contractors 
According to a 2020 article published by Complete Payroll Solutions, a privately held payroll, HR and third-party administrator, there are a few important distinctions employers should know prior to hiring and classifying staff as employees or independent contractors.  
Using guidelines from the IRS, in the case of W-2 employees, an employer has the right to direct the work being performed, including giving instruction, providing the tools, equipment and training to complete the work, as well as setting hours and schedules for the worker. If the worker is an independent contractor, an employer only controls the result of the work, not how, when or what will be done. The contractor can also use their own tools and methods to complete the work.
Payroll taxes are automatically deducted from a W-2 employee's paycheck and an employer will withhold income taxes and pay Social Security, Medicare taxes and unemployment tax on wages paid. Benefits such as health insurance, family and medical leave are offered to W-2 employees.
If an independent contractor receives $600 or more during the year, then an employer issues them a 1099 to calculate their earnings and self-employment tax but the employer isn't charged a payroll tax. Employers do not provide company-sponsored benefits, unemployment insurance or workers' comp for independent contractors. The regulations for workers' comp for W-2 employees can differ somewhat, depending on the state.
Build Your Infrastructure 
Even before adding part-time or full-time staff, entrepreneurs "need to put in place the employee systems, bookkeeping and structure" that the business will need, explained Deeds.
Patricia Wynn and one of her clients, Jaya KumarHe added, "You're much better getting the infrastructure in place early on than having it become a liability later on. Things like getting QuickBooks or similar bookkeeping software up and running and setting up a separate credit card and bank account for your business so you have records. When you're an LLC —a limited liability company—the tax liability is on you personally. If the business starts making money, you will be responsible for tax payments on your business income, but no corporate tax. On the positive side, you get to take all the deductibles, like mileage, for example."
Wynn has a separate bank account for Patricia Services, LLC and computes her mileage using the Everlance app on her phone. She has a group of printed documents for filling out expenses on a spreadsheet, timesheets, and contracts with clients for the work provided weekly.  
"If a customer does not have internet access, it helps to have some things printed up. I can access the spreadsheet online as well," said Wynn. "Right now, I'm using the spreadsheet to record expenses and doing my own bookkeeping, but as the business grows, I will probably need to hire an accountant."
Deeds recommended that Wynn work on resource planning and projections by looking at her current client load.
"In most businesses, it's hard to bring someone in for less than eight to ten hours a week. Often the less time people are working for you, the less reliable they are, especially if they are piecing together more than one job to make a living," said Deeds.
According to a survey conducted by Guidant Finance and the Small Business Trends Alliance, recruiting and retention of employees was seen as one of the top five non-Covid challenges faced by Black entrepreneurs; 17% of women overall who were small business owners perceived it is a strong non-Covid business challenge.
As a former manager for both McDonalds and Wendy's, Wynn is very aware of the importance of establishing reliability by training new staff.
She said, "If you hire too many, too fast, you're not getting the quality, you just brought in bodies who may not be open to receive training. But if you bring in one person and train them well, and they sign off on being trained, then you can hold them accountable."
Taking the Right Steps to Hire 
She added that, with Patricia Services, LLC, "if I brought someone in, I would like to bring them in for twenty hours a week with one or two particular clients. Over time, what they are asked to do by the client might change as the client becomes more familiar with them," and sees their skills in a variety of lifestyle assistance areas.
"But if you bring in one person and train them well, and they sign off on being trained, then you can hold them accountable."
Wynn says she will reassess her client load and staffing needs after April 2022 and through the end of the year.
"If, for example, I got four more clients, that would require one or two more staff members depending on the number of hours the clients wanted. I would start by bringing on someone as an independent contractor," she said.  "In the future, if the business gets considerably larger, then I might move toward having W-2 employees."
Since she established Patricia Services, LLC in 2021, Wynn will do her first filing of taxes for the business in April 2022. "Moving forward, I will look into filing quarterly as a business, which was recommended by my SCORE mentor, Maxine Stern," she said.
SCORE is the national organization of business executives, that is affiliated with the U.S. Small Business Administration. Many SCORE mentors are still working, and some are retired executives.
In addition to filing appropriate taxes, Deeds said entrepreneurs who add staff members must be aware of how they are interacting with clients and provide management leadership.
"When and if you get the wrong person, that can cost you clients. You need to give feedback to the staff after checking in with clients. The challenge with being a startup is that at the end of the day, you have to do all the things that big businesses do – HR, accounting, training, marketing, and building the business — but without departments and bodies to do it," said Deeds. "It's all up to you. Taking seminars with your local Small Business Development Center can give you tools to help organize your business."
Wynn says that while she is excited about working in her own business, she is also maintaining a work/life balance. "Stress causes diseases in your body, and I remember what overworking can do from my years managing at McDonald's," she said. "I've experienced that and I don't want it anymore."
This article is part of America's Entrepreneurs, a Next Avenue initiative made possible by the Richard M. Schulze Family Foundation and EIX, the Entrepreneur Innovation Exchange.


A New Entrepreneur Focuses on Staffing Plans

Leslie Hunter-Gadsden

In this new series, Next Avenue will follow Patricia Wynn as she embarks on becoming an entrepreneur with her North Carolina lifestyle assistant business. Future installments will note her progress, with advice for her and for other midlife entrepreneurs.Patricia Wynn, 52, of Hillsborough, N.C., just began her business as a lifestyle assistantThe pandemic has motivated many people to reconsider their career paths. For Patricia Wynn, a single, 52-year-old in Hillsborough, N.C., it meant being open to the possibility of becoming an entrepreneur.
"My relatives encouraged me, as someone who suffers from coronary artery disease, to make a change from the pressures of managing a fast-food restaurant during a pandemic."
"I spent twenty-six years at McDonald's in Atlanta, rising up the ranks to become general manager. Then in 2015, I moved back home to Hillsborough to help care for my mother before she passed, and became a general manager at Wendy's," says Wynn.
The Wendy's job lasted five years. In April 2020, she quit and decided to pursue a path as an entrepreneur, becoming part of the growing national trend of minority entrepreneurship.
As I noted in my Next Avenue article, "The State of Minority Entrepreneurshp in America," according to the Ewing Marion Kaufman Foundation, 2020 produced a surge in the creation of Black-owned businesses; about one in 250 Black adults started a new venture during that pandemic year.
Changing Her Original Plan
In Wynn's case, "my relatives encouraged me, as someone who suffers from coronary artery disease, to make a change from the pressures of managing a fast-food restaurant during a pandemic," she says.
While reviewing her expertise — which included managing staff, being food-service certified and caring for older family members — Wynn first considered running a group home for older adults.
Wynn then began working part-time at a home health care agency to familiarize herself with what would be required to open a group home.
"While at the agency, my first client had mild dementia. He was a former professor. I would talk to him, do his laundry and cook for him. He liked soul food!" says Wynn. "Near this time, I found a person with a group home, and she suggested that I take required courses and shadow her."
But the cost of the education would have been about $13,000. "I didn't have that kind of money," Wynn recalls.
So, based on that and advice from her friend Cozze Staples, she shifted gears.
"I decided that it would be more cost effective to start a business as a lifestyle assistant — doing meal preparation, running errands, housekeeping and offering companionship for clients."
Wynn noticed that on the website Care.com, for $12.99 a month, you could create a business profile advertising the services you provide. That, she realized, would give her a chance to trumpet her lifestyle assistant skills.
Why People Hire Her as a Lifestyle Assistant
While working at the home health care agency, in February 2021, Wynn got her first response from her Care.com profile.
Wynn with client Katherine Bland, who she assists with housekeeping and cleaning It was from a local couple in their early 80s, Virginia and Dr. Redford Williams. She's co-founder of a life skills company; he's a Duke University professor of psychiatry and psychology.
"After doing a background check on me, they hired me for eight hours, every Thursday. This couple wants to stay in their home and not go into a retirement home," says Wynn. "In addition to cleaning their house, I also walk through the property to see if there are any repairs needed that I should inform their maintenance person about."
The Williamses, Wynn says, "are my biggest fans."
Wynn mentioned to the home health care agency owner that she wanted to open her own business and the owner highly recommended seeking a free mentor through SCORE – the national organization of retired business executives affiliated with the U.S. Small Business Administration.
Getting a SCORE mentor when starting a business in midlife is something Nakeisha S. Lewis, associate dean and diversity, equity and Inclusion ambassador at the Opus College of Business, University of St. Thomas in St. Paul, Minn., recommends. (EIX, the Entrepreneurship Innovation Exchange at the university's Schulze School of Entrepreneurship, is a funder of Next Avenue.)       
Wynn began having Zoom meetings with her SCORE mentor, Maxine Stern, 78, a former Duke University CPA who lives in Chapel Hill, N.C., not far from Wynn, and has been volunteering with SCORE for about 10 years.
Says Stern: "I think Patricia's management background at McDonald's and Wendy's helped her a lot. She's not afraid of collecting data. She is not hesitant about the things you need to do to build a business."
Smart Advice From Her SCORE Mentor
Wynn notes: "Ms. Stern really helped me. She was very motivational."
Stern sent Wynn notes on how to apply for an LLC — a limited liability company that would provide personal asset protection. Stern also provided advice on the requirements to become a certified nursing assistant (CNA), in case Wynn wanted to work in a group home.
"We also talked about the rate I should charge as a lifestyle assistant," says Wynn. They decided that charging $20 an hour made the most sense, based on eventually working a 40- to 50-hour week.
"She wasn't afraid of the business, but there were things she didn't know."
"That was almost double what I made working part-time for the agency," says Wynn.
At each of their meetings, Wynn made sure she'd accomplished what the two of them had discussed the month before.
Stern said some would-be entrepreneurs come to SCORE with an idea, but then don't continue with the mentoring program when they find out all that's required to start a new venture.
"It can be overwhelming for some people," she says. But not for Wynn.
"She wasn't afraid of the business, but there were things she didn't know," Stern says. "She had to learn how to have her own business. It's a really different concept from being an employee."
Describing Wynn as a "smart, capable person," Stern said she and Wynn always discussed the "why" behind the monthly goals they agreed on.
Launching Patricia Services, LLC
In April 2021, Wynn officially launched Patricia Services, LLC, with an initial investment of less than $5,000 in her small stash of savings. "The business has to pay for itself," says Wynn.
She has three first-year goals for the business: "First, my ultimate goal is to get as much information, and more knowledgeable, about caregiving as possible," she says. That includes finding, and taking, free classes about caregiving and on how to speak to people suffering from dementia as well as getting caregiving certifications.
SCORE mentor Maxine Stern
"Second, I'd like to be able to add two more staff members. Third, I want to increase my advertising by creating flyers that I can distribute among contacts in social services who specialize in elderly or disabled clients of various ages," says Wynn.
She began developing her client list while working part-time at the home health care agency until September 2021, when she quit that job to devote all her energy into her lifestyle assistant business.
Today, Wynn has a diverse client base of six people, ranging from older adults to busy college professors and other professionals who are Gen Xers and millennials. She also does some weekend cleaning at a local bed and breakfast.
"With all of my clients," she notes, "I set it up so they can hire me for a minimum of four hours per week. That can be spread out through one, two or more days."
One client is Katherine Bland, a Duke University professor who has hired Wynn to help with housekeeping and cleaning. Another, Jaya Kumar, even sends Wynn weekly meal recipes to prepare for her family, since her time is limited while also completing a doctorate. 
 "The younger professional people need you because they work all the time," says Wynn. "The senior citizens need assistance to remain independent with their everyday activities."
Her Plan for Growing the Business
Wynn now has her LLC designation, a website and a profile on Care.com. She recently decided to add decals on her car advertising Patricia Services, LLC.
In the spring, she qualified for a federal government PPP (Paycheck Protection Program) loan of $4,375. She used it to pay her nephew and brother when they occasionally did heavy furniture hauling for her business.
So far, Wynn is plowing most of her earnings from Patricia Services back into the business — to pay for things like its mobile phone bills, gasoline charges, the Care.com profile and the website.
"Looking toward 2022, I would like to add another staff member," Wynn says. "But I have to grow slowly because if that person is out sick, I'm the one that would have to service their clients."
And in the category of "long-term goals," Wynn is investigating expanding her client base by becoming a vendor with the North Carolina Client Assistance program, which helps state residents with disabilities live more independently.
But right now, she says — with a nod to the McDonald's slogan — "I'm loving it."
She adds: "I'm thrilled to not have to go back to managing Wendy's. I'm proud to be starting a new chapter in my life. I've helped make Wendy's and McDonald's owner operations millions over the years, so I'm looking at using the skills I developed there and making something of my own and working at my own pace."
This article is part of America's Entrepreneurs, a Next Avenue initiative made possible by the Richard M. Schulze Family Foundation and EIX, the Entrepreneur Innovation Exchange.

Our New Series: The First Year in the Life of a 50+ Entrepreneur

Sometimes you can pinpoint an exact moment that changed your life. In my case, it was an ad in the local newspaper that simply said: Free Tango Lesson. Barely divorced and rudderless, a single mother of three sons, I took a leap of faith and went. The moment I stepped on the dance floor I knew I wasn’t in Kansas anymore. Lured by the seductive Argentinean tango music, I still wanted to flee but instead I was quickly netted in the vortex of my tango journey.
Leap ahead two decades and not only am I still captivated by tango, but now I’m an ambassador. To me, tango is one of the last bastions of true romance and it’s particularly welcoming to those over 50 who have the maturity to appreciate tango’s moody, yet warm ways and who enjoy the dual benefits of exercise and social connection.
Tango is Accessible for Everyone
To be clear, Argentinean tango is slow and gentle and not to be confused with the more theatrical ballroom tango. Pretty much anyone can dance this tango. If you can walk, you can tango. In fact, even if you can barely walk, you can still tango.
One friend of mine has Parkinson’s and MS, others have replaced hips or knees, one is legally blind and has a cane and they all come to tango because, aside from its seductive reputation, tango heals body and soul.
Sherry, a slender woman in her early 50s from Montreal, is the sight-challenged dancer who comes by Uber and with a cane. She said, "I first came to tango because it was better than focusing on other, less positive things in my life. I soon forgot everything else in my life and became addicted to the music and the warm social friendships that develop."
Jay, a 50-something housewares rep also from Montreal, said, “If  Dancing With the Stars can make 60-something ex-football players into dancers, then anyone can dance tango!"

When I  began tango, my physicality was intact, but tango was still a healer. Newly single at 42, I was thrust into a new life without familiar moorings and tango revealed itself as a welcoming oasis. For one thing, at tango class, if you register on your own (as most people do), you’re given a partner. Tango studio organizers maintain an equal ratio of men to women or in a non-gender bias ratio in terms of equal proportion of leaders and followers. In a class, you regularly switch partners so as to better learn the steps with anyone.
Accustomed to dancing and relaxing with many different people, my cobwebs of self-consciousness were magically dusted away.
Tango also insisted I abandon my oft-told divorce tale, since you can’t really talk about profound things as you dance. Consequently, you are kept totally present.
Power of Connection
But I also noticed something else at tango that is probably at its core: it both awakens one’s primal need to be touched or held or it slakes it — it is the safest sex I know, as well as an evergreen, never-ending romance that begins with each new set of dances.
Each new partnership is a three-minute relationship that brings another experience of communication. To an outside observer, the physical connection appears sensuous, but it is truly about that baseline human resonance. That is something we all crave. And once experienced, it breeds an addiction to more of the same, which explains why, as Paul (a documentary filmmaker from Montreal) said, "Tango, for most people, is once or terminal.”
Michel Cyr, who works in economic development in Montreal, agreed: "Tango is the only dance I know that allows two strangers to experience such a deep emotional connection in just a few seconds”.
Adds Jennifer, 57, a  graphics artist from Montreal:  “You never really know someone until you dance with someone. But once you connect to something in them that connects with something in you, that is beyond a casual chat and it’s an intimate conversation. Once in the embrace, a barrier is breached and there’s always the possibility or surprise of resonance. You never know who it will happen with."
Many of the tango dancers I’ve spoken to emphatically agree about the abrazo (the embrace) which is as unique as their fingerprint.  Find a perfect or simpatico embrace and while this might not be a new relationship, you’ll experience an intimacy of human accord that has an innate gravitational pull.
Andrea Shepherd, a tango teacher and yoga teacher who owns Mon Tango studio in Montreal with her husband, said, “Tango looks so intense to outsiders and it is, but it’s not sexual. It also allows you to let go mentally and have these unique, if brief, connections with different people. That keeps me coming back, plus I am always improving my skill level."
The Tonic of Tango
In a time where Face Time is anything but, and couples sit in Starbucks communing with their smart phones, disconnection is the malaise of the times. In contrast, there’s the tonic of tango which defies today's socio-culture. (As a bonus, just browse stories extolling the virtues of dance and aging and add 10 health points).
But tango’s best kept secret is its sweet spot: it offers egalitarian romance music, movement and other warm bodies and has no age or time limit. It is unequivocally inclusive and embracive and (and this is no small thing) it will never quit you.
The moment someone says, “Shall we dance?” your heart sprouts wings and your soul comes home. So you might not meet your second spouse at tango, but you’ll reacquaint yourself with your original soulmate (you!) and fall back in love with life. You’ll be swept away to a world where you morph into something other than yourself or better yet, remember just who you are. And that is more than worth the price of admission.


Tango: Where Romance Is Ageless

Marcy Goldman

Alzheimer’s disease doesn’t discriminate. No matter your fame, no matter how deep your pockets, it slowly, but methodically ravages minds. It's an unwelcome visitor. Few understand this more than the family of retired Supreme Court Justice Sandra Day O’Connor, the first woman to sit on the court.
Sandra Day O'ConnorDuring O’Connor’s life, she has become all too familiar with the disease. By last October, when publicly revealing her diagnosis of "dementia, probably Alzheimer's" (those were the doctor's words), the disease had already taken her mother, aunt and husband.
Her youngest son, Jay, a tech executive in San Francisco, spoke with me about how his mother provided Alzheimer's caregiving for his father John while she was on the Supreme Court and how that led her to retire at 75, in 2006. He also talked about how his mother, now 88,  is living with her own diagnosis. He and his brothers also provided recollections in the O’Connor biography out today, First, by Evan Thomas.
In these conversations, an intimate picture emerges of one of the country’s most powerful women navigating work/life balance on a grand scale —  the twin pressures of a husband progressively losing cognitive function while she carries out her unique responsibilities as one of nine justices on the Supreme Court.
The job and family circumstances may differ, but similar scenes are playing out privately in millions of homes across America.
How Sandra Day O'Connor Disclosed Her Dementia Diagnosis
O’Connor disclosed her diagnosis last October in an open letter to friends and her fellow Americans years after she got the news.  She wrote: “Some time ago, doctors diagnosed me with the beginning stages of dementia, probably Alzheimer’s disease. As this condition has progressed, I am no longer able to participate in public life.”
For her family, it was never a question of whether to go public. “We knew at some point it would become known that she was suffering from dementia and it seemed like a good idea to get ahead of this so some good can come out of this,” Jay O’Connor told me.
What O’Connor chose not to reference in her letter were her years as an Alzheimer’s caregiver for her beloved husband, where she had a front row seat to a progressive disease with no cure.  O'Connor told Thomas that her decision to retire from the Supreme Court, largely to focus on her husband’s needs, was "the biggest mistake, the dumbest thing I ever did."
O'Connor and the National Alzheimer's Report
The unforgiving  demands of caring for a husband who diminishes by the day would inform O’Connor’s service as honorary chair of the Alzheimer’s Drug Discovery Foundation and on the Alzheimer’s Study Group (ASG), the 2009 nonpartisan panel that developed a national plan to combat what the report said “poses a grave and growing challenge to our nation.”
The day that report was released, 10 years ago this month, O’Connor issued this warning in Congressional testimony: “Our study shows that in the next 20 years, the numbers of people with Alzheimer’s will increase more than 50 percent. And without some basic action in this country, ultimately one in two people over 80 are going to have this disease. That’s too many.”
What she couldn’t have known as she spoke those words was that she would soon be among those statistics.
Caregiver for Husband John O'Connor With Alzheimer's
For John O’Connor, a partner at a prestigious Washington, D.C. law firm, the early signs of memory loss didn’t escape the people who saw him every day.
“Linda Neary, his secretary, began wondering why he was asking her to copy the same documents twice, “ Thomas writes. And by 2000, Thomas reports, O’Connor went to Georgetown Hospital to see a neurologist, without telling his wife, and got the official word that he had Alzheimer’s.”
Sandra Day O'Connor and her husband John on their wedding dayAs O’Connor’s condition worsened over the next few years, Thomas writes, his neurologist told his wife that her husband was “having trouble writing down his thoughts. He can’t remember his words.”
The O’Connors then sold their home and moved to a condominium “so someone would be at the front desk,” Jay O’Connor told me, “to look out for my dad and make sure if he starts to wander out of the building, they could grab him.”
During certain hours of the day when his father wasn’t in his care program, Jay said, his mom would bring him to her spacious chambers at the Supreme Court.
“He would come and sit in her big office,” Jay explained. “She had a couch. She would do her work and he just sat there and looked through the newspaper. If he did wander off, it would be harmless, because there always would be a guard nearby.”
Leaving the Supreme Court
For Justice O’Connor, there were two tipping points in her husband’s Alzheimer’s journey.
The first came when she concluded she could no longer stay on the court. It was both a huge personal decision and, as the decisive fifth vote on the high court in controversial decisions, O’Connor was mindful of the ramifications for the country.
But it was a decision O’Connor felt she owed her husband. Thomas writes that she had told a friend, “John gave up his position in Phoenix to come with me [to Washington] so now I am giving up my job to take care of him.”
But in the months following her announced intention to step down, there was, in Jay’s words, “a strange turn of events.” Chief Justice William Rehnquist died, John Roberts was confirmed as his successor and Harriet Miers, nominated to be O’Connor’s successor, withdrew after some controversy. That would keep O’Connor on the court for another seven months until the following February when her eventual successor, Samuel Alito, was sworn in.
Thomas writes: "It was tragic because within six months of her leaving the court, he could barely recognize her."
The Second Tipping Point
But sadly, with her husband’s condition deteriorating,  it would be only months later that the newly retired justice would have to make the most wrenching decision of all, which was the second tipping point.
Every Alzheimer’s family has a moment when the spouse or children can no longer adequately care for the person with the disease. For Justice O’Connor, that moment came after she and her husband took a cruise off Turkey that Jay’s older brother, Scott, told Thomas was “a disaster,” adding, “they were afraid dad would jump overboard.”
The newly retired Justice had long resisted moving her husband to a special facility. But when she got back to Washington, according to the Thomas book, Scott said she cried and told him, “I’m ready. Show me what you’ve researched.” The O’Connors moved John O’Connor to his new home, an Alzheimer’s care facility in Phoenix.
While there, he formed an attachment to another woman. The newly retired Justice O'Connor, Thomas writes, "would come in and find her husband holding hands with this other woman, and with her characteristic strength she would sit down and take her husband's other hand."
Justice O'Connor on Being an Alzheimer's Caregiver
Just months before John O’Connor died in 2009, Justice O’Connor appeared on an NPR call-in program. It was the day the Alzheimer’s Study Group report came out. There, she spoke candidly about the caregiving challenges of  having a spouse with Alzheimer’s.
“Someone who is truly afflicted with Alzheimer’s needs somebody with them all the time.  There are occasionally gaps as long as an hour after my husband was brought home from a day care facility for people with Alzheimer’s before I could get home. And during that hour, he started wandering,” she said. “And that was frightening for me and I’m sure for him, too, when he realized he didn’t know where he belonged or how to get back.  It’s like caring for a small child. You can’t leave them unattended.”
In his book, Thomas traces a series of public moments for Justice O’Connor — her forgetfulness or odd behavior — that, looking back could have been a roadmap to her eventual dementia diagnosis.
Early Signs of O'Connor's Dementia
Perhaps the most telling was from September, 2013 when she was due to give a lecture at the University of Colorado Law School. Backstage, O’Connor turned to her friend and asked, “What am I speaking about?” Then she asked two friends to join her onstage and, Thomas writes, “they prompted her through a labored conversation.” One of her friends said, She knew what was happening,  but she was not ready to confront the reality.’”
Sandra Day O’Connor grew up on the Lazy B cattle ranch in Arizona, knowing there were no sure bets in life. Prolonged drought meant dead cattle and fears of selling off the ranch. Later, while on the Supreme Court,  O’Connor was successfully treated for breast cancer. And during her life, she has watched some of the people closest to her — her mother, aunt and her husband — transformed into shells by Alzheimer’s. Now, this most unwelcome visitor has her in its grip.
Jay O’Connor understands that short of a miraculous treatment or cure, there is no way out.
“It's this dreaded disease that she helped my dad through all these years, watched it just completely destroy him. And now she's got the exact same diagnosis,” he told me.
How O'Connor Responded to Her Diagnosis
At first, Jay says, his mother didn’t want to believe it — her worst fear — given a family history of dementia. So, for a number of years, he adds, “she just tried to power through. She’s a woman who has been able to overcome so many powerful obstacles in her life and career. And it turns out that dementia and Alzheimer's is just the obstacle you can't overcome.”
These days, Jay O’Connor and his brothers, like others with a family history of Alzheimer’s, wait and wonder if they, too, will be visited by the unwelcome guest or be spared.
“Our hope is that we won’t be afflicted with the condition ourselves, but our greater hope is that a cure is found for Alzheimer’s so nobody has to experience it,” says Jay. “You know, life goes on, so you just need to plow ahead.”


Sandra Day O'Connor and Alzheimer's: A Personal Story

Richard Harris

(Editor's note: This article is part of a year-long project about aging well, planning for the changes aging brings and shaping how society thinks about aging.  This article appeared previously on PBS NewsHour.)
Moments after Jay Lucas first met his future wife, Susie, he owed her an apology.
He mistook the senior examiner for a clerk during his first day on the job at the U.S. Patent and Trademark Office in Alexandria, Va. She called him a “sexist pig.”
“I took her out for coffee to apologize,” Jay said. “I spent the next 35 years apologizing.”
Jay and Susie married, bought a home together and raised two children. “We had a very good life,” he said.
(MORE: Transforming Life as We Age)
When they were thinking about retirement, the Lucases prepared for their old age by each purchasing a long-term care insurance policy from a private company. The two hoped it would cover the cost they thought they would incur if one of them needed to go into a nursing home.
A friend who worked as an insurance agent recommended the policies to them in 2000; each cost about $1,700 per year.
People buy long-term care insurance as one way of financing “personal or custodial care” in a nursing home or a community facility, according to the U.S. Department of Health and Human Services.
The cost of these insurance plans is calculated based on a person’s age, how much a policy will pay per day and how many days or years a plan will pay out, among other factors. Without long-term care insurance, people often either use their own savings or Medicaid to cover long-term care. Medicare does not pay the largest part of long-term care services.
(MORE: What is Long-Term Care?)
With their own long-term care insurance policies, Jay said he thought he could tap into the policy’s benefits in much the same way as if he had been in a car accident and needed to use his car insurance. He thought he only needed to pick up the phone and make a claim, and the long-term care insurance company would then find and pay for the needed facility and services.
Life Takes an Unexpected Turn

He always thought he would be the first to need to use long-term care insurance.
When Susie first showed unmistakable signs of Alzheimer’s four years later, Jay found out that their long-term care insurance policy was far more complicated than either of them realized. He quickly learned that the company would only pay money if she qualified to receive it. But, he said, “it’s up to me to find the facilities that are appropriate for the kind of dementia that Susie had.”
People often lack a basic understanding of what their long-term care insurance policies actually do, said Bradley Frigon, president of the National Academy of Elder Law Attorneys. According to the American Association of Long-Term Care Insurance (AALTCI), 8.1 million people have long-term care insurance. In 2012, 54 percent of people applying for long-term care insurance were between the ages of 55 and 64, AALTCI reported, and nearly two-thirds of new claimants were age 80 or older.
 
What surprises people the most about these policies is the so-called elimination period, Frigon said. That’s the number of days during which time a person needs and receives long-term care before an insurance company will cover the costs.
But there are far more intricate details and important definitions that are critical to understand but easy to miss in these plans, which are legally binding contracts.
For example, a plan’s benefit may not kick in until the policyholder experiences multiple “activities of daily life impairments,” which means a person requires assistance to go to the bathroom, eat, shower or get dressed. Other plans make provisions for “severe cognitive impairment,” such as long- or short-term memory loss, disorientation or diminished reasoning skills.
Susie’s deteriorating condition with Alzheimer’s qualified her to receive care paid largely by insurance as part of her policy. They were both in their 50s.
After Jay diligently researched facilities and forms of care to find the best fit for his Susie, he secured an at-home care company that sent a worker to their house every day while he continued to work at the patent office. The at-home care company billed him every month, and then a few weeks later, Jay would receive a reimbursement check from the insurance company to pay the bill.
That went well for a few years, he said. Then, her forgetfulness worsened, and her imagination haunted her even more.
One day, Susie attacked her caretaker, thinking she was being kidnapped when in reality, they were just going for a walk outside. Next, a lawn care worker in the neighborhood noticed that Susie had dementia and coaxed her into writing him a check for hundreds of dollars to cut a single limb off of their tree. Finally, Susie beat the trees in their backyard after she mistook them for giants who would harm the Lucas home.
“At that point, I realized I need more than just day help,” Jay said.
Moving From Home Care to a Home
The insurance company rejected Labier and would not cover the cost of sending Susie there, which amounted to thousands of dollars per month. The facility’s owner did not answer a survey question correctly about who would be contacted in the case of an emergency. The owner said facility staff would call 911.
That was when Jay contacted a lawyer, Robert Bullock, of the Elder and Disability Law Center in Washington, D.C., to appeal the insurance company’s decision.
Bullock drafted an appeal so thick that it “looked like a Supreme Court brief,” Jay said, arguing why the facility was good for Susie and should be covered by insurance.
For the insurance companies, these policies are simply part of doing business, Bullock said.
When someone buys a policy for $5,000 a year for 10 years, Bullock said, “the insurance company has taken $50,000 and invested and made whatever on the money and not had to pay a dime.”
When a claim is made on that policy, he said, “they build a wall up and make it difficult to make the payment; it’s a business.”
A month after Bullock submitted his appeal, the insurance company wrote Jay a letter simply stating that it would cover Susie’s care at Labier. She could stay in the group home.
Not everyone buys long-term care insurance, sometimes opting to self-insure if they can afford to do so. In fact, some experts recommend not buying long-term care insurance.
No Regrets 

Despite the issues his family faced, Jay said he does not regret buying the policy for his wife, primarily because it offered an unlimited duration. He estimated that the insurance company paid as much as $700,000 to cover Susie’s care. If he had to pay for that care out of pocket, Jay said “that would have bankrupted me.”
“She needed the care. I had to do it, but it was unaffordably expensive,” he said.

Overall, the insurance industry could do more to educate consumers about the complexity of long-term care policies, explained Frigon with the National Academy of Elder Law Attorneys. That way, people would be better equipped to make smart decisions about how to fund their long-term care.
“I think the industry could be more consumer-friendly about that, but I don’t think that’s going to happen,” Frigon said.
(MORE: 3 Innovative Ways to Age in Place)
After spending years in the group home that Jay thought was best for his wife, Susie died in September.
“My Susie, I hadn’t seen for 10 years. My Susie, with the laughter, the spark, the competent person I married, little by little, she died 10 years ago,” Jay said. “The body went on, but that’s the story of Alzheimer’s. That’s all.”
Jay hopes people learn from the challenges his family faced and remember one thing if they are confronted by problems with long-term care insurance: “The lesson is to fight it.”
Laura Santhanam is a data producer for PBS NewsHour. Follow her on Twitter @LauraSanthanam.


Is Long-Term Care Insurance a Good Idea?

Laura Santhanam, PBS NewsHour

Very little history, imagery or understanding of transgender older adults exists in the public sphere. The stories that circulate are often sensationalized, come from a lens of voyeurism or focus on celebrity figures.
Bobbie, 60, of Hanford, Calif., Jay, 59, of New York and Gloria, 70, of Chicago To Survive on This Shore: Photographs and Interviews with Transgender and Gender Nonconforming Older Adults, a photography and interview project turned into a book from photographer Jess T. Dugan and social worker Vanessa Fabbre — both based in St. Louis — provides a level of representation previously unseen for this community. The book features 65 portraits of trans older adults between ages 50 and 90. Dugan was the photographer and Fabbre led the interviews with the subjects, who gave the thoughtful and moving quotes featured in the book. Currently available for pre-order on Amazon (copies will ship Aug. 28), the book also will be available directly from the publisher, Kehrer Verlag, in late April.
John, 69, of Mount Ida, Ark.“We realized this group of older trans adults is really significant for many reasons. Many of them came out prior to the internet, the current conceptualization we have of the trans community or even the word ‘transgender,’” Dugan says. “Many people we photographed and interviewed were significant activists and paved the way for the culture and freedoms we have today. We were worried that this history was at risk of being lost. Our mission was to document it so it would be preserved and people would learn from it going forward.”
The duo intentionally highlighted participants with a diversity of experiences in terms of race and ethnicity, gender identity and expression, sexuality, socioeconomic status, life narrative, age and geographic location — including stories from beyond the places traditionally associated with the LGBTQ community like New York City and Los Angeles. Dugan and Fabbre traveled across the U.S. to small towns and rural places as well as the bigger cities. All of these factors affect the trajectory of a trans person’s life and access to resources and opportunities. To Survive on This Shore is not an all-encompassing collection of trans older adults, but it shows the great breadth of variation from one person to the next and presents a more nuanced approach to storytelling.
“We have people who transitioned in 1970 and also in 2016,” Dugan says.
A Project on the Move
Most of Dugan’s work engages with issues of identity, often focusing on gender, sexuality and LGBTQ communities. This specific project was partially motivated by a photo of hers that went viral on the blogging and social media site Tumblr, where a younger transgender man wrote that he had no visualization for what he would look like as he grew older, and that a photo of Dugan’s gave him this meaningful experience. Though the photo he was reflecting on was not actually of a transgender person, the idea that younger trans people felt they had no visual for older trans people was interesting to Dugan.
“We hope [To Survive on This Shore] is a positive representation for trans people as well as an educational tool and a tool to raise awareness, empathy and understanding,” she says.
Jay, 69, of Albuquerque, N.M.The process began in 2013 when Dugan and Fabbre were looking for a way to combine their interests, which had some overlap, and collaborate on a project. The two started interviewing and photographing older trans adults they knew or were connected with.
“If somebody referenced something that was very significant to them, I would try to incorporate that into the portrait somehow,” Dugan says. “John in Arkansas talked about being a big hiker. We sought out this location where he goes hiking to make the portrait. Jay in Albuquerque is also a big hiker, so he wanted to meet in the national forest.”
By 2015, they’d collected portraits and interviews with 20 people around the country, and a write-up in The New York Times “completely exploded the project,” Dugan said. Fabbre and Dugan were flooded with more than 100 emails from people wanting the chance to participate — the chance to be seen and heard.
“There was something very significant about traveling to each person and making the photograph in their space and doing the interview in their home,” Dugan says. Part of the reason the project took so many years to complete was the logistical challenge of photographing and interviewing 88 people around the country. Sixty-five are featured in the book, though all 88 interviews and portraits will live on the project’s website.
Undertold Histories
Many people featured in the book bring up the experience of being transgender over decades and decades — how some things have changed and how some things haven’t. Jay, a then 59-year-old transgender man from New York who has since passed away, said in the ‘50s and ‘60s, LGBTQ folks were all lumped into the same category. “Society identified me as a lesbian and seemed to ignore my transgender status,” Jay's passage says.
Grace, 56, of BostonSimilarly, Grace, 56, of Boston, took Fabbre and Dugan through her identity journey and how she has been referred to over a lifetime.
“In the ‘60s, they called me a sissy. In the ‘70s, they called me a faggot. In the ‘80s, I was a queen. In the ‘90s, I was transgender. In the 2000s, I was a woman, and now I’m just Grace,” her passage says.
The powerful firsthand accounts in the book address issues of discrimination and elder abuse in health care and nursing homes; challenging and changing relationships with spouses, children and grandchildren; early trans activism; later-in-life transition (“I missed the first fifty years of my life, but I’m not missing the second fifty,” reads a quote from D’Santi, 54, of Santa Fe) and much, much more.
There is incredible and important learning to be had within the pages of To Survive on This Shore. One common thread that weaves throughout every story: aging and the experience of being older and transgender.
What is 'Successful Aging'?
Fabbre — a social worker who wrote her dissertation on trans aging issues — thinks a lot about how we as a society conceptualize and discuss aging.
“I often have my students Google successful aging, and what comes up are these stock images of happy, white, heterosexual couples walking down a beach or perhaps riding bikes through a park together,” she says. “It seems like a very narrow definition of how you’re supposed to live a happy life, and it obscures a lot of identities and social contexts that are complicated for people. I like the images in [To Survive on This Shore] because they offer a more complicated view of who is aging and also what it looks like to be successful or happy in later life.”
D'Santi, 54 of Santa Fe, N.M.Fabbre says that we are quick to ask, “Is this person aging successfully?” when we should be asking a more difficult question: “Is our society facilitating successful aging for everyone?"
“I think there’s a tendency to frame successful aging as a list of top 10 things you can do as an individual to age successfully, but over time it creates this implicit assumption that whether you age well or not is an individual level issue,” Fabbre says. “So then it becomes easy to assume that if someone’s not aging well, it’s their own fault.”
Both Fabbre and Dugan would like To Survive on This Shore to help challenge ideas about trans people and about aging. The ubiquity of getting older creates an opportunity for an audience of people outside of, or unfamiliar with, the transgender community to engage with people within the community.
“So many people speak about wanting to live authentically and having to weigh the risks of living authentically,” Dugan says. “Some people may have only seen media versions of the trans community or negative representations — I think this project allows them an entrance point because the aging element is very relatable.”
Beyond the Book
At some point in the course of the project, Dugan and Fabbre realized that in the process of photographing and interviewing dozens of older transgender people, they were generating a huge amount of oral history — not all of which would make it in the final, condensed quotes, but all of which should be preserved.
The interviews in their entirety, plus the photographs, will be kept in several LGBTQ archives, and Fabbre will use them in her own research as well.
Charley, 52, of Charlottesville, Va.“I realized that talking to this many people around the country actually formed this dataset that doesn’t exist anywhere else,” Fabbre says. “It felt like a disservice to only use a small quote. I felt compelled to do good research on the interviews, have them continue to live on and have other people read them that may not come across them otherwise.”
Fabbre and Dugan want the book’s distribution and visibility to reach outside of the art world. In the fall of 2017, the Center on Halsted, an LGBTQ center in Chicago, hosted an exhibition of the project organized by the Museum of Contemporary Photography, an event the duo would like to duplicate.
They’ve received interest from nonprofit and LGBTQ groups to use To Survive on This Shore for training purposes. A group in Boston is using the project’s materials to educate older adults about trans older adults they might encounter in senior centers and nursing homes.
“We hope people will use the book for all kinds of reasons and missions," Dugan says. “We really want people to take it and use it in service with whatever they need or whoever they need to train and educate.”


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