‘I didn’t think it through’
Sonia Basuroy remembers a conversation with her 80-year-old father in 2018. He had called to say he could no longer take care of her ailing mother; they needed to move in with Sonia and her family.
“I was blindsided,” said Sonia, but she didn’t question his request. “If that’s what we need to do, then we’ll do it. I didn’t really think about the logistics or anything. I didn’t think it through.”
It’s a decision that thrust Sonia into the arduous role of a full-time caregiver. But her journey of crushing responsibility had already begun long before her parents moved in with her; as caregiving demands intensified, they left Sonia struggling emotionally and physically with the overwhelming reality of sandwich-generation responsibilities.
At the root of Sonia’s caregiving odyssey was the inability to find reliable, culturally competent caregiving support in a healthcare system that is unprepared for the needs of an aging immigrant population.
“Being in the Bay Area, I was a little frustrated that we didn’t have more South Asian focused help for the elderly,” said Sonia. “And it’s pretty heartbreaking. The South Asian demographic here is so high, and yet it’s very difficult to find relevant resources,” she said.
‘If they needed my help, I was there’
As the oldest sibling, Sonia took on the traditional role of being responsible for her parents. The family moved to San Bruno, California, from England when she was 10 years old, and Sonia has always lived near her parents in the Bay Area since.
“I’ve never been farther than about 30 to 45 minutes from my parents, and I’ve always been their number one resource, go-to person,” she said.
Ten years ago, an uncommon case of shingles in the eye temporarily disabled Sonia’s 76-year-old mother, leaving her with severe nerve pain and dementia-like symptoms. She eventually recovered, but her illness marked Sonia’s first brush with intense, unpredictable, long-term caregiving.
At the time, Sonia was a full-time healthcare professional raising teenagers. For the first two weeks of her mother’s illness, she stayed overnight at her parents’ house, managing her mother’s incontinence: “She couldn’t remember how to walk or where her bathroom was,” recalls Sonia.
Her parents had helped her raise her children when Sonia was working. “So it was just an automatic way to reciprocate. They are my parents, and if they needed my help, I was there.”
But the reality of caring for three generations overwhelmed Sonia. She needed help.
“It was the first time I ever experienced having to hire a caregiver.”
Sonia first tried agencies suggested by the hospital her mother went to, but found them “very expensive”. The sticker shock of 24-hour care was a financial burden neither she nor her parents were prepared for. Eventually, they hired a Filipino helper referred by a relative. The helper worked six days and nights a week, adapting to the needs of her exacting parents, who, says Sonia, “with all the love in my heart”, are “picky” and “not easy to satisfy.”
Over the next six months, until her mother’s recovery, Sonia continued to oversee her mother’s follow-up visits to the doctor and visits from the home health nurse and therapists. Over the next year, Sonia’s mother, now dealing with comorbidities from her shingles, made frequent visits to the ER. This took a toll on her 80-year-old father.
Her parents remained physically independent until they could no longer do so. That’s when her father asked to live with Sonia.
After her parents moved in, Sonia and her husband realized their home could no longer accommodate their expanded family. So, in 2018, the family moved together to a multi-generation house in Newark.
“We were just no longer a family of four,” said Sonia.
The ad hoc search for care
There are an estimated 63 million family caregivers in the U.S., about 30 percent of whom are sandwich generation caregivers, who like Sonia, care for both children and adults.
The Indian community’s caregiving challenges are a subset of the wider American experience, compounded by socio-cultural needs and expectations.
For the next several years until her mother passed on, Sonia continued to care for both her parents through her mother’s multiple falls, hospitalizations, hospice, and home health care.
Between the end of 2023 and 2024, her mom had gone to the hospital about eight times, earning the moniker “frequent flyer” from her doctors. By 2024, Sonia’s mom was diagnosed with end-stage kidney disease and placed on hospice care. With little to no understanding of options available to her, Sonia brought her mother home.
It did not go well with her mother at first. “When she realized she was on hospice, she was very upset,” recalls Sonia. “She thought I was pushing her to die. When, in fact, hospice was like a godsend…They helped me so much trying to navigate and answer questions and figure out things,” she said.
And then there were new costs on the books. While Medicare covered hospice and home health visits, her parents’ Social Security paid for the caregivers’ costs. Sonia and her husband covered all their living expenses.
The first month that her mom was in hospice, Sonia hired help from an agency. “The amount to pay was ridiculous… it was literally $6,000 a month!” As her mother regained movement after being comatose and bedridden, Sonia stopped overnight care.
The second time her mother entered hospice care, a social worker alerted Sonia about California’s In-Home Supportive Services (IHSS) paid caregiver program. But Sonia found the process of qualifying as a caregiver painful and long; it took her 9 months to become an official caregiver. Sonia got paid $19.50 an hour ($20 since 2026) for 48 hours a week for her mother and 28 hours/week for her father.
But the program did not cover the round-the-clock care her mother needed.
“You can’t pay me enough for this,” said Sonia.
So she used the neighborhood app Nextdoor to find the extra help she needed. After several failed attempts to hire help through agencies (one of which disappeared with their deposit), Sonia finally found two local Indian-origin caregivers.
The demands on a desi Daughter
By then, the scramble for support had taken its toll on Sonia. She was burned mentally, physically, and professionally between her caregiving duties and her own health issues, a brutal 2-hour commute to work and a demanding job, while shepherding a son through high school.
Sonia called it quits on her career. She gave up a new, lucrative position in less than a year.
“I really wanted to go higher, and this was the stepping stone. But with all I was going through, I was already burning the candle at both ends.”
“I just couldn’t handle it anymore.”
At home, as in many desi families, her parents at first resisted hiring a caregiver. “I had to fight them on that,” recalls Sonia. “I said, ‘It’s not just you. I need the help.’ They were completely blind to how this was affecting me and my family. They did not realize that I had actually left the workplace.”
“Caregiving has changed me… My empathy cup is dry.”
After her mother passed earlier this year, Sonia is her father’s primary caregiver. Her father is now under palliative care, entirely dependent on medications for survival– 15 at last count – something Sonia is uncomfortable with. “I think he needs more comfort care, rather than any more meds,” Sonia said in an email. At a recent visit to the ER, he was prescribed another medication, which he refused.
“He wants no more meds. The side effects are awful.”
Sonia has observed a deterioration in her father’s mental health. “I can see it in his body language, and hear it in his tone” in their conversations, she says.
Does it help to have desi care?
Though Sonia’s parents had lived outside India for over 60 years, they remained rooted in tradition and cultural practices like food and familial expectations.
“They speak English very well so that wasn’t a problem; it’s just that they want a specific type of person, someone who understands them, and that they can speak Hindi to if they needed, who can help with the cooking and clean the house the way it’s supposed to be and take care of my mom as an Indian woman… that we couldn’t find, that was really difficult,” she says.
For a caregiver, understanding the culture matters, says Sonia.
“Having an Indian caregiver, there’s this auntie-uncle, or nani-nana kind of respect, …to ask how they wanted to be cared for, if a certain way of doing things is okay.”
Sonia didn’t have too many choices with the caregivers she hired through an agency. “We are, unfortunately, in a deficit of caregivers in general. And then when you want to filter down to Indian, we don’t have a lot of choice,” Sonia said.
Finding her tribe in Desi Daughters
By 2024, with a bedridden mother at home, a packed caregiving schedule, and a lost career, burnout started catching up to Sonia.
She admits to experiencing conflicting emotions of guilt and shame that were “changing my relationship with both my parents.”
Feeling “resentful, burdened, and completely exhausted,” Sonia started looking for help online. “All I wanted to do was to talk to someone other than my friends… I was really looking for people who are just going through the same thing as I was.”
That online search led her to the National Caregiving Alliance, but their local support groups were full.
So Sonia turned to Facebook for support groups, but finding a true fit was a struggle for someone who calls herself an in-betweener, “not a 100% traditional Indian, but I’m also not 100% non-Indian.”
Finally, a Google search led her to Desi Daughters, a community and resource hub for South Asians caring for elderly parents. “Culturally, it felt safe,” said Sonia. “There are certain things you would talk about, and everyone would understand those feelings.”
As Desi Daughters evolved beyond being just a hub for finding caregivers in the U.S. and India, members began sharing emotions about their caregiving experiences.
“That’s still very taboo,” said Sonia. “People feel very vulnerable about being judged. And we’ve had a few judgmental comments, and there has been some open dialogue about feeling burdened and burnt out,” she said.
Discussions like these gave Sonia the outlet she badly needed.
Sonia found herself offering answers to the queries the community had about caregiving challenges she had already dealt with.
So she joined Desi Daughters first as a consultant and then as its director of community engagement. She kicked off a focus group to discuss specific aspects of caregiving. She now volunteers as their Bay Area chapter head; it’s one of the group’s largest chapters with 60 members.
Caregiving as a community responsibility
After Sonia’s mother passed this year, she decided to work on herself by pursuing her personal training certificate. “I was finding it hard to hold that space for others when I hadn’t really done anything for myself,” she said.
In her new career as a personal trainer and group fitness instructor, Sonia wants to build a business that the South Asian community – especially women – can benefit from. It hasn’t been easy; she has had to cancel classes to accommodate her father’s medical emergencies. “This is what I went through with my mom because of all of her ‘events’ and doctors’ visits…This worries me again. I’m just starting a new career in health and fitness.”
Ten years of caregiving have made Sonia, now 58, view elder care as a community responsibility. “I’m not talking about just paid caregivers,” she says. “I’m talking about a unit, a solid team that can be available to families in the home; whether to check up, to transport, to give medicine, to pick up medicine, anything and everything. It’s not just a financial impact; the mental and physical impact on the caregiver is intense.”
Sonia thinks the solution may lie in a public-private partnership, but it has to start with the government.
“It’s got to be government-funded, which means they [home-based caregiving services] have to accept Medicare and Medicaid or insurance…We’ve got to think about the bigger picture. The government supports this so that the people who are actually doing the caregiving can go to work, earn money, spend the money in the economy and can pay taxes, so that those taxes can be then used to support this government program,” Sonia suggested.
“We have to have active community help.”
[Coming Soon Part 2: How Desi Daughters is building up grassroots caregiving resources for the Indian American community]
