Salma Abdul was born and grew up in Bangladesh. Her children left for the US to study, then settled in the country as permanent residents. When her husband died, she found herself alone. Her children, unable to leave their lives in the US, but worried about her aging alone, asked her to come and join them in America. When Abdul arrived in the USA at 69 years of age, she had to find her feet in a brand new country and culture. Her adopted country was technologically more advanced and spoke a language she didn’t understand. Its culture was completely different from hers. Its systems were complex and, because she couldn’t speak fluent English, harder to navigate.
With the numbers of immigrant elderly surging in cities like NYC, cultural competency on the part of service providers like hospitals becomes ever more important.
“I feel tension in my mind,”: Being ill and unable to communicate
Abdul’s real troubles began when she became ill with kidney disease and had to visit a city hospital on her own. Her children were pre-occupied with work and demands from their young families, and couldn’t spare the time. The hospital had few interpreters. Intake staff at the hospital couldn’t speak Bengali and instead made her access the Translation Hotline and tell the disembodied voice at the other of the phone her symptoms. Doctors ignored what she was struggling to say in her broken English, or dismissed her after a cursory examination.
Discrimination as a barrier to care
According to a study in the Journal of General Internal Medicine, researchers analyzed data from 6,017 Americans older than 50 who took part in a Health and Retirement Study and found that one out of five of these adults experience discrimination in healthcare settings, and one in 17 experiences it frequently. “Ageism in healthcare is very common and experienced by many older adults,” says lead author Stephanie Rogers, MD, MPAS, MPH, a clinical geriatric fellow at University of California San Francisco. There have also been several studies that prove that immigrants in particular report more discrimination in healthcare settings (Derose et al., 2009).
In Abdul’s case, she “found it difficult to understand the instructions the doctors gave her or the questions he asked her,” said Afroditi Panna, India Home’s Case Manager. Abdul’s daughter also spoke to Panna. Abdul’s daughter felt her mother, was being ignored and treatment options were left unexplained, perhaps because she was older immigrant woman of color who spoke hardly any English. The doctors and nurses would explain things to her when she accompanied her mother, Abdul’s daughter reported, however, when her mother went alone, they would be unresponsive and “not nice”.
“That’s when we decided to start accompanying Salma to the hospital because, as with so many of our immigrant elders, she didn’t know what questions to ask her doctor, how to fill forms, or even where to go, or how to get to different specialists,” Panna said.
Case managers and cultural Interpreters
In her experience with Care Management, Panna said, older adults need help with much more than just paperwork. Sometimes, she and her team are called upon to become interlocutors between cultures.
For instance, when a doctor asks a Bangladeshi senior, how she feels emotionally or mentally she’ll invariably answer, “amar onek tension ,” or “I have a lot of tension in my mind.” In Bengali culture, the English word tension is often used as a catch all term for anxiety or depression or worry, and other distressing mental issues. Most American doctors don’t understand this culturally specific term, unless someone with cultural competence (like an accompanying case worker) can explain what the elder means.
Salma Abdul’s case highlights an important point that often gets lost in the scramble to deliver aging services: with the numbers of immigrant elderly surging in cities like NYC, cultural competency on the part of service providers becomes ever more important.
The fact that her team speaks Bengali and understands South Asian ways has made a huge difference in her clients lives, says Afroditi Panna, the Case Manager at India Home.
How to deliver Culturally Responsive Care
At India Home, where we have culturally competent and multi-lingual staff like Panna, working with our South Asian elder population, we have found that the culture from which our elders come affects all aspects of their behavior. For example, it affects whether they seek help, the kind of help they seek, the symptoms and concerns they bring to their doctor or their family’s attention. Here are some of the guidelines that our case workers and managers follow in order to become more cuturally responsive:
Maintaining the tradition of respecting elders: A focus on engaging clients in a manner that is consistent with their cultural values and adapting communication to be consistent with the client’s traditions. For example, in Asian and South Asian culture this would entail addressing our elders with a honorific and never by their name. It would also mean case workers listen respectfully (and patiently) so that the elder feels understood and establishes rapport before rushing into the business at hand. It would mean being respectful of cultural norms around touch, personal space and so on.
Involving the Family: Most of our immigrant elders live with their families and are dependent on them. Individualistic Western methods where the patient is solely responsible for their own welfare may need to be modified for aging South Asian elders. Other family members may have to be made familiar with the treatment process and involved actively in their care. To take Abdul’s case as representative: our case workers engaged with her family members and took the time to talk to them and explain her treatment.
Framing issues in culturally relevant ways: For example, music and art therapy is used in Western practice to reduce tension and stress, but some South Asians older adults may have restrictions based on their religious beliefs on the kind of music or they are allowed to listen to or the art they may practice. A culturally competent case worker may have to advise the Western doctor to come up with alternate methods to help her client to cope.
Facilitating collaboration: Many older adults have learned important ways of coping with life’s stress and have developed impressive resilience that is informed not only by their experiences but also by specific cultural beliefs and values. Our case workers learn a lot by showing cultural humility and listening and learning from our clients. These are some of the ways in which India Home’s case management department is developing client-agency interactions. It’s an evolving art Ms. Panna says and her team learns something new every day. But for her, she says:
“cultural competent case management means that for every one of our 75 active cases, our clients feel that we understand their concerns, and that we are treating them with respect. We want them to feel that we hear them.”
Join India Home and the Diverse Elders Coalition for a Twitter chat about cultural competence in aging services on Wednesday, March 21st at 3pm EST. Follow the hashtag #CultCompMatters to join in.
Jamaica, Queens: On November 28, 2017, India Home inaugurated the first ever Dementia Day care program tailored to South Asian immigrants at it’s new facility in Jamaica, Queens.
Titled 3 D, for Desi Dementia Day Care, the facility plans to offer expert care that aligns with South Asian values for older adults suffering from mild to moderate dementia. We expect this new expansion will help to bridge the gap for culturally appropriate dementia -related services in New York city.
With a mandate to “serve all” South Asian seniors, regardless of income, faith or country of origin, for the last 10 years, India Home’s culturally relevant programs have helped immigrant South Asian elders deal with one of the toughest problems of growing old in America – social isolation and loneliness. We hope that the new 3D center will provide a welcome and safe space for South Asian patients experiencing mild to moderate dementia, but also provide a respite to caregivers.
South Asian seniors are among the fastest growing groups of seniors in New York city. According to the Center for an Urban Future’s report in New York City alone, Indians are the second largest immigrant group. Between 2000 and 2010 the population of older immigrants from India grew by 135 percent or about 8000 people. The number of Bangladeshi immigrants from Bangladesh grew in the previous decade by 471%, while the Pakistani populations grew by 38 percent from 2008 to 2011. These immigrants face language and cultural barriers, increased isolation, and higher levels of poverty–all barriers to access needed services like dementia care.
Wide Range of Programs to Meet Growing Need:
Speaking on the occasion, Dr. Vasundhara Kalasapudi, India home’s Executive Director said: “For the past 10 years, India Home has offered South Asian seniors culturally appropriate services in Queens and our expansion into dementia services is driven by the growing need for such services in the South Asian community.”
The 3D Desi Dementia Care center will offer programs specially tailored to help with dementia such as exercise, arts activities, music and sensory therapy. The center will also provide two hot meals a day, counsel families on dementia care and provide a respite for caregivers.
Nahar Alam of the Center of Asian American Health at NYU will assist with outreach in South Asian community in Queens.
By all accounts, Bharti Parikh, 66, has led an exciting life. Her life has been an adventure that took her from a childhood in the tiny village of Patton in Gujarat, India, to a law degree, and fulfilling years in America that included working for the City of New York, being invited to be an artist at President Clinton’s inauguration, and being a singing star on TV.
However, there’s also another sadder, more stressful side to her story, one that is unfortunately shared by so many older adults in America. Bharti Parikh is a caregiver, and has had to be one for years. A senior herself, she continues to care for her husband who has Parkinson’s Disease, and her 88 year old mother. Until May 2017, she was also caring for her aged father who suffered various illnesses that kept him going in and out of hospital.
Her husband cannot use Medicaid, which pays for two-thirds of longterm care in the US, because it requires clients to be impoverished to qualify for benefits. Because of their income and their savings, the couple do not qualify and has “no choice.” Bharti is one of those millions in America who are trying to pay for long term care through savings, private insurance and family resources.
We highlight Bharti’s story as an example of seniors, who, even as they age and grow more frail, are also caring for loved ones who are older and sicker than themselves. Apart from the financial toll, caregiving can be physically and emotionally brutal on the caregiver. Caregivers like Bharti who are singlehandedly managing to take care of loved ones often find themselves alone and isolated.
However, with America’s population aging rapidly, the nation’s 2.2 million home care workers (also known as personal aides or home health aides) can barely meet the demand for their services. Not only is it hard to find care, it’s even harder to find a way to pay for care for more than a few hours a day, she says.
A slight, pretty woman with dark hair and clear skin who looks younger than her years, Bharti is an active member of India Home, always eager to dance the garba or sing traditional songs in her beautiful voice. She spoke to Meera Venugopal at her home in Woodside, Queens, while an aide took her husband for a walk.
Ashvin and Bharti Parikh on an picnic to Bear Mountain with India Home
Caregiver for her husband, parents and in-laws
My husband was fine until 2009. Then he got Parkinsons Disease. Now the disease is at its worst, and he needs someone to take care of him all the time. We can get help with Medicare but only a few hours a day, for three to four days a week. Then after 2-3 weeks, the payments stop. Now I have hired someone to take care of my husband for a few hours a day. That’s a private hire; I pay the aide from my pocket. The person I hired does everything from brushing my husband’s teeth to giving him a shower. He massages him, feeds him, takes him on a walk.
Before I was doing everything for him, and I had no help at all. But the aide I have now for my husband is old too, and he’s not going to be around forever. If I can get someone younger that would be great.
I talked to an agency and a social workers came and said “I’m going to help you. Your case is tragic, so I’m going to do this fast.” Once he went back, I never heard from him again. I’d call him and he refused to come to the phone and talk to me. Someone else called and said, “There are too many people on the waitlist. You won’t get an aide. You should apply for Medicaid.” I can’t apply for Medicaid—I have an income, and my husband had an income, I had a job, plus we have savings. So here we are. My sons are in Ohio, so my daughter, Shephali and son-in-law are living with me. They help me take care of my husband and my late father and my mother.
You know what’s tragic? I used to be a supervisor for New York City in the Human Resources Administration. I know all the rules and regulations on Medicare. I met Mayor Bill de Blasio at a fair in Queens, and he said he would get me a home health aide for my husband and I still didn’t get one. I’m going to go to the Mayor of New York City again and I’ll ask him: What happened to your promise?
Bicycling to college in small town India
I was born in a very small village called Patton, in Gujarat, India. I was the only daughter and my father loved me very much. He let me do anything I wanted. In my town they didn’t allow girls to go to school, even my uncle didn’t want me to study, but my father sent me to college. He didn’t want me walking to college, so I would bike. College was so much fun. I had so many friends. I would dance, take part in singing competitions, go on picnics. I started taking singing lessons, my father encouraged me to do that too.
I got married when I was in my second year of college. My mother-in-law too, let me study, and work. My son was born when I was in my 4th year. I started law school when I my son was five years old. I was going to start working as an advocate when my husband decided to come to the US.
A hole in her son’s heart brought her to America
My second son was born with a very small hole in his heart. The doctors said it may eventually close, but my husband said “I want to go to America because they have advanced treatment there. So we applied and got here.” He’d applied for a visa in 1968, but couldn’t come because he didn’t want to leave his mother alone. He would renew his application every year, and finally he got accepted in 1980. Until then, he was working as a chemical engineer. He was a Gold Medalist in Chemistry and he got the visa in two months! I came in 1981 with the kids and joined him in New York.
Chemical engineer to candy store owner
I started working at the Paul Stewart clothing company in New York almost as soon as I got here. That was my first job in America. Then after a year and half, my husband bought stores, first in the Bronx and then in Yonkers. Both stores had candy, magazines, lotto.
I would also work in the Yonkers store. We worked hard, day and night. Even my kids helped out in the store. We did very well. Then I had my daughter and I quit working in the store. But after 5 months or so of sitting at home, I was bored and applied for a job with the city. They finally called me on a Friday and said I had to come for an interview on Monday. The application was 25-30 pages long and they wanted to know my entire life – my education right from school in India.
In 1989 I started working for the city, for the Human Resources Administration (HRA), and I worked until 2012. I started as a case worker, and then I took the exam and I became a supervisor. We bought our house in 1994 in Woodside, Queens and we’ve been here ever since.
“Mom, you are a superwoman”
Bharti’s award from the Associations of Indians in America for her service during Diwali celebrations at South Sea Port
I would work from 8:00 a.m. to 4:00 p.m. then come home and take care of my kids, mother, father, husband. My parents were not doing so well. I would do everything, cooking, getting the groceries, school supplies, sitting with my kids as they did homework, going to PTA meetings, attending their programs and events. It was hard when the kids were small and I had my mother-in-law with me and she would get sick all the time. Now my kids say, “Mom, you are a superwoman.”
My father also lived with us until May this year. His aide would go home at 4:00 p.m. He was sick all the time. There were a lot of emergencies. I would have to run to the hospital and stay with him all day and all night. He couldn’t be alone because he doesn’t speak English. My niece lived near the hospital and in the morning I would go to her place and I would take a shower and go back to the hospital. For years, I did all this.
Later on my husband got worse and so I couldn’t stay with my father all day and night. But he couldn’t hear very well and he wouldn’t understand what they said, so the hospital would call me. Then my mother would have some problem in her head, and she would fall down again and again. They even did a biopsy, and they didn’t find anything
I had to look after all three. I had no choice. Sometimes my mother was sick, then my husband was sick. It could get very hectic. But in every Emergency, I felt God helped me. Someone somehow came along and helped us.
An invited artist at President Clinton’s inauguration
Singing with her guru – Bharti’s recordings are still played on TV programs for Indians in the US
Through all this I continued singing. I learned singing in the US with a Pakistani teacher. I even made a cassette tape of songs with him in India, and in the US we would do a lot of programs for Indian TV. Even now, they’ll sometimes play those all programs.
Bharti’s talents as a henna artist got her invited to participate in President Clinton’s Inauguration in Washington D.C.
For ten years I did henna designs every year for the South Sea Port Diwali Mela (Fair) for the Association of Indians in America – New York Chapter. I was self taught. I would get invited to weddings in Manhattan to do henna. Then the Association sent me to Washington D.C. during President Clinton’s inauguration. Artists were invited from all over the USA. We stayed for four days in the Marriott, and I was set up in a big tent on the National Mall. Hundreds of people came to get henna designs from me.
Art at India Home
I like that we get to do art at india home. I signed up for the drawing class. I want to learn new things. I like coming there, I like doing the exercises. My husband likes it too, all the different activities and meeting people.
On facing the future
My husband is getting worse. My mother is getting deaf, and she needs a full time aide. But it’s okay. We are not going to take the money with us—whatever we have we will leave it here, so why not use it? It’s not about the money, it’s about getting help.
If I can even get a little bit of trained help that would be nice. But I will spend whatever money I have to take care of him.
Bharti Parikh often brings her husband with her on her visits to India Home. Her children, she wanted us to say, have all done well. Her daughter works in the financial sector. The baby with the hole in his heart, Ripal, who was the reason the couple moved to America, is now a well known pain management specialist. Her eldest son, Nehal, is a neonatologist at Cincinnati Children’s Hospital and researches prevention of neurodevelopmental disabilities in high-risk newborns.