Estimated reading time: 9 minutes
Caregivers – The Unsung Heroes
It all began about 12 years ago for Belmont resident Ashika Patel Balani when her father-in-law initially moved in with her and her husband; he was going through a tough time with mental health issues following a history of cancer and a heart attack. Then, in 2020, when Balani’s father passed from a stroke, her mother came to live with her.
“Expect more than what you think it’s going to be,” Balani now tells others about dealing with a parent who loses a partner. Her father’s death severely impacted her mother’s mental health, leading to hospitalization, a decline she had not expected to see in her mother.
After exploring several caregiving scenarios – including a move across the state – Balani now manages a full-time career, two young children, and three aging parents.
Balani and her husband are building a house in nearby San Carlos that will include a dual master bedroom to accommodate her mother and an independent living space for her in-laws. Her mother and in-laws are in their seventies; Balani expects her primary caregiving responsibilities, with help from siblings, to last their lifetimes.
The Indian diaspora is aging
There are nearly 63 million family and informal caregivers in the United States, 7 million of them in California alone. According to estimates, 10 million Californians will be over 60 years old by 2030, making up one-quarter of the state’s population.
The Indian diaspora is also aging. A 2023 study estimates that about 13 percent of Indian immigrants to the U.S. are over 65 years of age. Many younger immigrants urge their aging parents in India to move to the U.S. so they can care for them. This creates a demand for culturally and linguistically appropriate care – a critical challenge given the rising shortage of caregivers in the U.S.
In an interview with India Currents last month, President and CEO of San Francisco-based Self-Help for the Elderly, Anni Chung, urged communities to prepare for caregiving ahead of time for an aging population.
Exploring resources ahead of time
Preparing ahead of time was a common refrain at a November 19 news briefing on aging, co-hosted by the American Community Media and the California Department of Aging (CDA) as part of a series to make caregivers aware of state-funded resources. The briefing also aimed to educate the public about California’s Master Plan for Aging (MPA) , the state’s blueprint to address the needs of an aging demographic.
While panelists highlighted that the experience of caregiving is transformative and can be emotionally rewarding, sustained and unsupported caregiving can also lead to physical, emotional, and financial strain and, critically, social isolation.
“It is so important that the 7 million family caregivers in California — family members, friends, neighbors — know that there are resources and people they can turn to so they never feel alone in their caregiving journey,” said Susan DeMarois, Director of the California Department of Aging and a panelist at the briefing.
Family & friend caregivers
About 65% of all care is estimated to be provided informally by family and friend caregivers, and half of adults in America help a loved one with everyday tasks. Yet, said DeMarois, their work often goes unrecognized, even by caregivers themselves.
“If you ask a caregiver, ‘Are you a caregiver?’ They will probably say no. But when you ask, ‘Do you drive a loved one to medical appointments? Do you pick up prescriptions? Do you cook and deliver or drop off meals?’…There are also very intimate tasks where family members and friends provide care that is otherwise provided in assisted living communities, in nursing homes, and in hospitals…If you’re providing occasional or intermittent support, or if you’re providing round-the-clock care in the home, we [CDA] recognize all of you,” she said.
Services for caregivers
Highlighting the importance of services for caregivers, Paul Dunaway, director of the Sonoma County Adult and Aging Division, and VP of the California Association of Area Agencies on Aging, said, “None of us can thrive in isolation, and yet the physical and emotional demands of caring for a loved one can leave us feeling alone, isolated from work, friends, and family.”
Among a wide range of services for family caregivers, Dunaway said his agency offers a variety of training, from emergency preparedness to the basics of dementia care. Most training programs are offered online and in person.
Caregiver support also includes services such as counseling, access to support groups, and respite programs, so the caregiver can get a break from caregiving. “Whatever role you play as a caregiver, there’s a community of care for you, too,” said Dunaway. He advocated thinking of caregiving as a community effort, saying,
“I think that in our Westernized culture, we’ve prioritized independence entirely too much. And the word should be ‘interdependence’; switching from aging in place to aging in place, together.”
Falling into Caregiving
Like Balani, many family caregivers tend to slip into the role – a hospitalization here, an errand there, until it becomes a full-time commitment.
“I was a caregiver long before I knew I was a caregiver. I’ve had my dad with me for about 5 years, but the caregiving journey really started about 10 or more years ago,” said panelist Dan Salinger, who cares for his ailing 93-year-old father full-time and now chronicles their journey together on Instagram.
Salinger and his family have managed their father’s care over several years of his deterioration – from when he was largely self-sufficient but with occasional cognitive impairment, to now, when he needs support at all times. “Without even realizing, the progression just comes. And it doesn’t matter what your race, creed, religion, or economic status – dementia does not discriminate. The ravages are going to come regardless of what your standing is in life,” said Salinger.
Alma Valencia also found herself slipping into the role. She has been a full-time caregiver for a decade for her mother, who has FTD or frontal temporal dementia. Valencia’s journey began when she had to take over as her mother’s power of attorney. “We’re good daughters, we’re good sons, we’re good family members, you know, helping each other out … but being a full-time caregiver is quite a different experience,” she added.
Transition can be tough
Becoming a full-time caregiver for a family member can stretch financial resources and disrupt lifestyles. Dan Salinger had to give up a career as an attorney and manage his own health challenges when he took over his father’s care.
“It was a hard transition,” he said. “I’m living off a lot less than I did before. Fortunately, I was in a position where I had some assets. I sold a house. And for a couple of years, we were living off the money. And then, I’m incredibly fortunate that my dad became really popular on social media [his Instagram has close to half a million followers], and that helped bridge some of the financial strain. But that’s hitting the lottery. So, absent social media, I would still be struggling significantly, and maybe taking advantage of some of these [state] resources that I am just now learning about, after five years of caregiving.”
Paid caregiving in families
After trying to balance her career in the fashion industry and a family (she is married with two children) while still caring for her deteriorating mother, Valencia finally became a full-time caregiver in 2019. She turned to California’s In-Home Supportive Services, which pays qualifying family members to be caregivers of eligible patients.
State and federal policies haven’t caught up with changes in family structures and longevity, making caregiving more complex and long-term, said Dr. Donna Benton at the briefing; she is Director, USC Family Caregiver Support Center (FCSC) and the Los Angeles Caregiver Resource Center (LACRC).
“The reason we got Social Security at 65 was that most people lived to an average age of 63 or less. …but with more people living longer and into their 80s, caregiving can last sometimes 10 years or more,” Dr. Benton pointed out.
Hospital at home
With more women in the workforce – who were likely to be the primary caregivers – families living apart, smaller-sized families, and people living longer, family caregiving has become not only harder but also more complicated, with complex medication regimens being added to basic care, said Dr. Benton.
“The new trend is called hospital at home. How many of us expected to have our homes turned into a hospital? It’s crazy what is now expected of families to do in terms of long-term care in the home,” she said.
Pointing out the lack of infrastructure and the expenses of caregiving, Dr. Benton said, “We don’t have as many paid caregivers who can help. Even for an informal family caregiver, we have a lot of systemic barriers – payment rules and health insurance rules that have become so complicated that you need a degree in how to handle healthcare financing.”
To preserve American family values that care for the aging and sick, Dr. Benton said we need more “wraparound social support.” She urged caregivers to reach out to their local chapters among the 11 nonprofit California Caregiver Resource Centers (CRCs) that provide support services for family caregivers of adults with chronic and debilitating health conditions or neurocognitive disorders.
Planning ahead
Experts on the panel warned that a frantic hunt for resources just when you realize that you are going to have to take charge of a sick or aging family member is not optimal for caregivers.
“Very few new parents wait until the day that they need daycare or childcare to make a plan. Similarly, for elder care, it’s so important to learn and understand and know these resources before you need them…we seldom make the best choices and decisions in a crisis,” said CDA director Susan DeMarois.
Ashika Patel Balani used some transportation resources like SamTrans’ Redi Wheels and Peninsula Family Services’ Got Wheels! to get her mother around to her appointments, but her search for private caregivers for her father in 2020 was disappointing. At the time, she said she did not find much state help through Medicare, but would now explore IHSS services via Medi-Cal for the future.
Recalling how challenged she felt at the start of her caregiving journey, Alma Valencia said she would have liked information about such resources from the doctor’s office that first diagnosed her mother’s condition, so she wouldn’t have had to scramble for options on social media.
An arduous but rewarding journey
While burnout, financial challenges, and social isolation can challenge a caregiver, not many want an out.
Balani, who sometimes feels “tapped out,” says she knows her caregiving duties may hinder her career growth. “For me to be a good person to my parents and to my kids and also to myself [Balani is a cancer survivor] is a priority… I’m kind of okay with that,” she says.
“Caregiving is the most difficult thing I’ve ever undertaken in my entire life, but it’s also one of the most rewarding,” said Dan Salinger. “I like myself today a lot more than I did when I was working and playing full-time… I’m a happier person, I’m a better person as a result of my caregiving experience.”
Valencia also agreed. “Caregiving is hard, but not impossible. To any family caregiver out there, there are resources, so do not give up…until there’s a cure, there’s community.”
California Resources for Caregivers
The panelists urged caregivers, irrespective of their immigrant status, to pursue state resources and check if they are eligible.
- California Department of Aging (CDA): Centralized website for aging resources
- California’s Master Plan for Aging: In year 5, California’s 10-year blueprint for caregiving.
- In-Home Supportive Services (IHSS): This program is administered by all 58 counties in California. It is the largest Medicaid home and community-based waiver in the nation. It serves over 800,000 individuals. Eligibility requires qualifying for Medi-Cal (Medicaid).
- Area Agencies on Aging (AAAs): A state-supported network of 33 AAAs serves all 58 counties in California, providing caregiver support services.
- Caregiver Resource Centers (CRCs): Eleven caregiver resource centers across California offer services that include: coaching, counseling, support groups, and workshops.
This article was written with support from the American Community Media Fellowship Program.