A Portrait of Family Caregiving in America
I looked closely into my mother’s dearly familiar face, taking inventory of the changes: the big bruise near her eye, her weight loss, mosquito bites on her neck, her freshly combed hair, and the sweet smell of talcum powder. With moisture gathering in my eyes, I took in the spidery veins tracing unforgettable patterns on the paper-thin skin of her forearms, her milk-white hair, the hooked nose, and those same murky eyes that I hadn’t looked into for four months and 14 days; our longest separation in 16 years.
My 89-year-old mother had lived in our home in California since 2006. However, it had taken a complicated series of events and considerations that resulted in her occupying Room 211 at Athulya Assisted Living in Chennai, India.
The air-conditioner blasted on high, abating the heat and moistness of August in Chennai. My mother sat on the easy chair I’d bought in March. A blue blanket that my brother gifted was tucked around her. It was the same one that had been folded at the foot of her bed in our house for years.
Nee yaaru? (Who are you?) my mother asked in Tamil, and her question gouged at me.
“I am your daughter,” I said. She stared into my face, then turned to look at her caregiver, Vinitha, before turning back. Suddenly, she smiled, and her face lit up. “When did you come?” she asked softly.
Vinitha fussed around her, adjusting the blanket, her chair, the neckline of her nightgown, and the footstool. I told my mother that I had arrived that morning from California.
“California?” she asked, and her voice was higher-pitched. “Have you come to take me back?”
I paused. That option was no longer a possibility. “Yes, Amma, if you want to come back,” I responded.
Descent into Dependency
In the early years, my mother participated in my life in big and small ways, helping raise my children, cooking and managing the kitchen, worrying over sniffles and coughs, and showing up for my daughters’ ball games and dance performances.
But gradually and inevitably, she began to decline.
In 2019, after a nasty fall that caused multiple pelvic fractures, I became my mother’s primary caregiver.
Caring for my mother was studded with special moments. On weekends, when I cooked her favorite meals, she would stop and inhale the aroma of a simmering radish sambhar, aviyal, or pumpkin kootu, chuckling with pleasure and requesting a taste even before the dishes were done, telling me, repeatedly, how much she enjoyed my cooking.
On our weekend grocery drives, she’d exclaim over holiday lights and shop displays, chattering throughout the trip, repeating stories that she’d told me many times. Once, at Madras Groceries in Sunnyvale, she was offered coffee and given a chair to sit on. She glanced at me meaningfully, as though to say, “Look how they like me!”
But as my mother’s physical needs compounded — chronic gastrointestinal disorder, diabetes, failing eyesight, almost no hearing, and rapidly advancing dementia — she plummeted emotionally and cognitively.
More often than not, she sat in her room, staring dully at the walls.
One day, I asked her to sign some documents. Her trembling fingers hovered over the paper for several seconds. Then she looked at me, her eyes shimmering with tears. She had forgotten how to sign her name. The misery on her face was unbearable.
My mother began staying up at night, begging for sleep aids, and calling my name throughout the day. Her dark moods often led her into an intolerable labyrinth of suspicion and accusation. Managing her needs at home became overwhelming.
Invisible Family Caregivers
In our communities, there is a deep-rooted cultural resistance to considering institutions for aging loved ones. As a result, family caregivers typically manage medications, handle doctor’s visits, perform wound therapy, and manage the medical and emotional needs of loved ones in a myriad of ways.
She calls this work incredibly visible and taken for granted in our culture.
Besides physical needs, many family caregivers have to contend with emotional and dementia-related issues.
Health and Wealth Outcomes for Family Caregivers
“Care has consequences,” with poor health outcomes and economic instability, said Resendez. More than 40 percent of caregivers have two or more chronic diseases, and 23 percent find it challenging to take care of their health, he said.
It was true in my case. I knew my cholesterol was high, but in the years of caring for my mother, I could not find time to visit my primary care doctor. Working out, or going on walks to cut the stress was far too infrequent. And often, when I returned from one of these activities, my mother would be seated at the kitchen table waiting for me, shaking with anxiety.
Financially, my mother’s care ran into thousands of dollars.
I hired a certified nurse assistant, at about $600 per week, to help me for three hours every weekday. I believed I could manage the rest of the time, and couldn’t justify the expense of full-time help.
Stories of family funds disappearing in the process of caring for a loved one are all too common.
San Francisco resident Audrey Ferber spends $20,000 per month on full-time caregivers for her ailing husband. Ferber doesn’t qualify for county help but gets 16 free hours from the Veteran’s Administration (not included in the monthly amount).
Ferber said that to meet their expenses, she was forced to sell the house they had lived in for 35 years. They have a little income from Social Security and a piece of commercial property. But she is worried about her own retirement as the money depletes. “There’s in my mind a constant weighing of factors concerning my husband’s quality of life which is much higher living at home with us, but the strain on me and the isolation I feel is sometimes intense. Somehow, I don’t feel like I would have developed Rheumatoid Arthritis if I wasn’t so stressed,” she wrote in an email. Ferber needs a knee replacement that she has been putting off. She feels she needs “to be fully available for his [her husband’s] many hospitalizations.”
While most Americans want their loved ones in home settings, “this dynamic of having to impoverish ourselves to have the care you need is one of the biggest drivers of inequality in America that no one talks about,” said Poo.
Like Ferber, I, too, feel that the years of caring for my mother were profoundly meaningful but, also emotionally, and physically draining.
A Broader View: Historic Legislative Progress
Elected officials have begun to understand that caregiving cuts across party lines. There have been several bills that made it to Congress under President Biden.
The American Jobs Plan included a $400 billion investment in Medicaid Home and Community Based Services Home (HCBS) to address the waiting lists for people applying for HCBS and to raise the wages of the caregiving workforce.
The American Jobs Plan was folded into the American Rescue Plan (ARP), and it was passed in Congress to become law in March 2021 with a $12.7 billion provision for HCBS. That fund was increased to $27 billion for people who need long-term services and support.
The Build Back Better Act, passed in the House of Representatives on November 19, 2021, included $150 billion earmarked for HCBS. Unfortunately, this bill did not pass, but if it had, “it would have been the single largest investment in good jobs directly benefiting women and women of color in the history of the United States,” said Poo.
The Options in California
In California, In-Home Support Services (IHSS) is a program set up to support family caregiving. The program, funded by Medi-Cal, is primarily for low-income people.
However, the reality is that the barriers to accessing IHSS services are many. It starts with an application, after which there is an in-home service assessment. This assessment is performed by a social service worker who uses a “functional index ranking” and an hourly task guideline to calculate the number of hours a care recipient will need. If the state and the recipient are not in agreement over the number of hours, then there is an appeal process, which will only add to the delay in receiving care.
Once the issue of hours is resolved, hiring a caregiver commences, which could be arduous depending on needs and availability.
Caregiver wages differ from county to county. In Santa Clara county, it is $17.62 per hour, a little more than minimum wage ($16.40/hour, scheduled to increase to $17.20 per hour on January 1, 2023).
As one recipient noted, “They [IHSS] are effectively pairing the least educated, least trained, and most financially desperate employees in California with our most vulnerable citizens. It’s a recipe for disaster.”
Applying for and receiving care from a state-approved caregiver can take anywhere from a few weeks to months.
Senior Care Institutions for Aging Immigrants?
Under what circumstances do people move their aging loved ones from a home to an institution setting? I posed this question to David C. Grabowski, professor of health care policy at Harvard Medical School. His answer was exactly what I wanted to hear: “oftentimes we hold up a community or home care on this pedestal, but that can be very isolating, that can be very lonely and so if a nursing home does have a high quality of life and is an engaged environment all of us would have our loved ones in that engaged environment instead of lonely and depressed and isolated at home.”
When I looked at senior care facilities locally, I found scant few options for an aging immigrant like my mother.
Belying the report by the Administration for Community Living, stating that of the 54.1 million adults over the age of 65 in 2019, 12.9 million were from communities of color, I found few non-white residents at the elder care institutions I visited in the Bay Area.
When I asked about Indian Americans at Bridge Point in Los Altos, a facility with 120 units, the staff member I spoke to could not state with any degree of assurance that he knew of any. At Atria in Sunnyvale, a similar-sized facility, I heard about one Indian American female resident, and it was the same at some of the smaller places I called.
“We essentially have not adapted any of our systems, policies, or culture to really support the incredible shift in our demographics that has occurred over the last several decades,” said Poo.
One driver of this lack of diversity is the cost of institutionalization. For my mother, who needed help with activities of daily living, the monthly charges at a nursing home could range between $4,500 to $11,000 per month.
But, apart from the cost, I could not see my mother in any of these settings. My mother had stopped wearing shoes, claiming they hurt her feet. The sound of a ringing telephone terrified her. She had forgotten how to operate devices and appliances, including showers, light switches, phones and microwaves. She had become obsessive about packets of Splenda that she stashed in dresser drawers, under her pillow, and tucked into the sleeves and pockets of her clothes. Most importantly, the food would not have worked, and I had no confidence that my mother would be any less lonely or that the staff would be able to tolerate her eccentricities.
Was I Right?
The decision then seemed easy. The cost of caring for my mother in India would be more affordable, from $1,500 to 3,500 per month; the staff spoke my mother’s language: Tamil; the food was familiar; there was a doctor on staff; plus there would be other residents from her background and culture. The only problem: My brother and I would be far away, and it would take us a day and a half to reach her in case of a crisis.
“Your story, unfortunately, is going to be the norm,” Grabowski responded when I explained about my mother. “I can’t send my parents to India, but the options here are very limited. ‘I looked at all the options, and nothing worked.’ That can’t be our solution, right?” Grabowski asked.
While I can justify the decision to move her to India intellectually, it is another matter to rationalize it emotionally.
At the outset, my mother had a hard time adjusting to the new environment. Over the phone, she kept asking me to come back. She soon began to believe that the caregivers were hurting her, asking me to intervene daily. In due course, she stopped responding to me, refusing to take my calls.
So it was with some trepidation that I walked into her room that August morning.
It was evident to me that despite her fears and paranoia, she got good care and affection at Athulya. I witnessed caregivers and visitors affectionately calling out to her, offering their cheeks for a kiss, holding her hands, and asking her questions that would make her throw her head back to laugh.
My mother passed away in August in Chennai with my brother and me beside her. We put our lives on hold for three weeks and spent most of our waking moments with her. During that time, she recognized us every once in a while, her gaze laced with her usual affection and concern. And it made the experience bitter-sweet.
Now, three months after her passing, I often wonder whether it would have been better to have had her in an institution near me in the last few months of her life.
Jaya Padmanabhan is editor emeritus at India Currents. This report was made possible through a fellowship from Robert N. Butler-Jack Rosenthal Age Boom Academy at Columbia University.