Ill and aging parents. A heartbreaking reality that most of us will have to cope with sooner or later. The inevitable reversal of roles, as the hands that once deftly buttoned our shirts and led us confidently across a crowded street, now reach out to us for help in performing the basic tasks of daily living.
It is estimated by the U.S. Administration on Aging that a full 25% of all households in the country are involved in caring for a family member, usually a parent. While the number may not be quite that high in the South Asian community, it is nevertheless increasing rapidly, as more and more families are choosing to bring aging parents and relatives from their native countries to live with them permanently.
Typically, the caregivers are adult children with kids of their own, often known in the media as the “sandwich generation”—caught between childcare and elder care. Research has shown that almost 65% of women in this country will have to deal with extensive or partial elder care issues.
Chandra Deshmukh, a Marin County resident thinks that “sandwich” is an apt description of a person in her circumstances. “I have two little kids and a father who is often in hospital with complications from diabetes,” she says. Her father lives in Houston, Texas with her older sister, and Deshmukh has already flown to Houston three times this year to help with his care “dropping into my husband’s lap the kids, their homework, dinner and piano lessons.” She says she has learned to live with a constant sense of guilt, feeling inadequate at work and incompetent at home. “There is this nonstop worry in my head that I am not doing enough for anyone—my kids, my husband, my employer, or my father, whom I am very close to,” she adds.
According to Rita Ghatak, a Palo Alto based psychologist and specialist in elder care, guilt is a very common feeling among adult caregivers. “The feeling of helplessness and guilt can be overwhelming at times and in trying to take care of everything themselves, these women, (and most of the caregiving is done by women aged 35 to 50), fail to look after their own needs,” she says. Ghatak knows, because she has been there herself. For 14 years, she was a long distance caregiver to her parents who lived in India. In that time she flew to Delhi 16 times to take care of, first, her father who suffered from Parkinson’s disease, and then her mother who suffered a stroke in 1995. “I was completely stressed out,” she remembers ‘There were times when I was so tired and worried that I could not think straight. I wanted to be in both places at the same time.”
Ghatak is also CEO of Older Adult Care Management (OACM), a private organization founded over 15 years ago, and considered a pioneer in the field of elder care. The organization provides a comprehensive care program for adults through quality home care services like trained health aides, family counseling, case management services, and elder care education. OACM has virtually no South Asian clients, because, Ghatak says, they are largely unaware of the variety of elder care resources available in the community. “It is not that they want to be ignorant, it is just that they do not know where to go for the information. Sometimes a parent’s illness catches us unawares and we are unprepared to handle it,” she says. Lack of information led to less-than-desirable situations like the one described at the beginning of this story. In this case, the elderly man was referred by the police to the county-run Adult Protective Services. In turn, OACM was contacted and Ghatak ended up sending an information packet in the mail to the caregivers. She never heard from them but she hopes that the family was finally able to get some help and take care of their father.
When it comes to taking care of one’s parents, most adult children are lost in a maze of emotional and logistical issues. Some diseases like dementia (a common form of which is Alzheimer’s disease) or Parkinson’s disease, both of which are on the rise worldwide, according to the World Health organization, make home-based caregiving especially difficult. Still, how can one send a parent to an outside facility? Will that not amount to abandonment? How would the parent take it? What about the cost: emotional and financial? Decisions like these are hard to make and even harder to justify to relatives and siblings who are watching from the outside.
Using trained help, strangely enough, is one of the last options considered by many South Asian caregivers. “It is expensive but more importantly it could be seen as pawning off your responsibilities,” remarks Deshmukh, whose has just succeeded in persuading her reluctant sister to hire a door-to-door service to take their father to the doctor for regular appointments. However, using trained help could ward off potentially dangerous situations. “If I had to do it again, I would definitely use trained help,” confirms Inderpal Grewal, a full time professor and mother of two little girls living in El Cerrito. Grewal had just given birth to her second child when her mother, who suffered from acute rheumatoid arthritis came to live with them. To Grewal, it was spotting the little things that could prevent the bigger things from happening that drove her crazy. “I was always worrying about things. Are the bars in the bathroom safe? Is the house too cold? Is the bed okay?” she says. “In spite of all this my mother caught pneumonia, because we had not kept the house warm enough. Old people are more fragile than they appear.” Subsequently, her mother went to live with another sibling in Connecticut where a home health aide came to look after her needs several times a week.
Taking care of a parent can create stress and awkwardness between siblings.
Rashmi Rustagi is a stay-at-home mother of four in Palo Alto. Her children range in age from 5 to 15 and take up much of her energies and time. Rustagi’s parents live with her. Last year, her mother suffered a stroke and became almost bedridden, needing constant care. The subject of who would be the main caregiver came up often at family discussions with the other siblings. Though each of them make financial contributions towards their mother’s health care, Rustagi feels that she was chosen because “most often it is the sister who stays at home or is the wealthiest who gets to take care of the parents. The others plead work pressure, or lack of space or money.” Rustagi feels a little taken for granted because she ends up putting in so much more effort and time than her sisters and brothers do. Lately, she says, she has taken to keeping a log of the time she spends looking after her mother’s needs like taking her to doctor’s appointments, or the physical therapist. “Not the expenses, mind you, just the time,” she hastens to add. “And one of these days I am going to show it to my siblings just to let them see for themselves how much effort it takes to just keep things going.”
To many South Asians, taking care of a family member might mean flying half way around the world several times a year. As Ghatak testifies from her experience “it takes a heavy toll on your family life.” Even so, bringing the family member over to the U.S. may not be a logical solution because of the high cost of health care and the emotional cost of uprooting the person from her native culture. In addition to this, says Grewal, the person often finds herself confronting a racist health care system in America, “one that believes that most immigrants are out to rip off the system.”
Pradeep Joshi, a co-founder of the IndoAmerican Community and Service Center (IACSC), and a commissioner serving on the Senior Care Commission of Santa Clara, agrees that seniors who come over from India have to deal with isolation and a loss of empowerment. “And without MediCal, healthcare is prohibitively expensive,” he stresses. “A recently passed immigration law states that those seniors who immigrated to the U.S. after October of 1996 are not eligible for Supplemental Security Income (SSI) or MediCal. This will definitely have a negative bearing on family decisions to bring a parent over.”
All too often, the “sandwiched” adult, torn between making time for the kids and the parent, feels like the rope in a tug-of-war game. Ghatak suggests a few simple guidelines to make the task easier. Planning ahead is the essential key to elder care management. Confront the situation and talk about it and if the parent is capable, involve him or her in the decision. Scope out the services available in the community, clubs, recreational centers, senior centers, and groups that the parent might be interested in joining. If the parent is handicapped or suffering from a debilitating disease, look into the possibility of hiring home care aides. And above all, make time for yourself, to exercise, socialize, rest and maintain recreational outlets. Lack of proper care of oneself might lead to stress-related illnesses like chronic headaches, ulcers and depression.
With over 200,000 South Asians in the San Francisco Bay Area, it is inevitable that senior support networks are springing up within the community. Apart from sporadic activities organized by the local temples, mosques and gurudwaras, the Icse in Santa Clara runs an excellent senior program that stresses independent living. The Center hosts lecture programs, yoga classes, computer and writing courses and a variety of social activities for South Asian seniors from day outings to cultural programs.
Looking after a relative or parent can be an enriching experience and the ultimate expression of love and compassion from one human being to another. Deshmukh’s children are learning this valuable truth as their mother packs her bags for yet another trip to see their grandfather. In the Rustagi household, life is just a little richer, as grandparents and children learn to share their living space and their experiences with each other. “It finally boils down to this-there really is no right or wrong way to do things. Accept your limitations and just do the best you can,” states Ghatak.