This post originally appeared on the India Home blog.

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.

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”

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

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.

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.

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.

The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.