Sunday, December 13, 2015

Asking For Help In A System That Doesn't Speak Your Language

Will Varner / BuzzFeed

So Ying Chan came to the United States with her husband in 1976 to raise her two grandchildren, Jeff and Jessica Man. The children's parents worked several jobs and were rarely home. Although she didn't speak English (and would never learn to), she became fast friends with all the neighborhood Chinese grandmothers. Chan entertained her grandchildren by taking them to all the cheap haunts near Washington, D.C. — the National Zoo, McDonald's, and the neighborhood grocery store.

Then in 1992, Chan's husband became ill and died. Without her one real companion in a country that was foreign to her, Chan fell into a deep depression. She told family members repeatedly that she wished she were dead. As the years passed, she developed Alzheimer's and her behavior grew even more erratic. Her grandson remembers her ambling out to meet his friends whenever they drove up to the house and staring into their car window wordlessly.

The family grew increasingly worried for Chan's safety. They would come home to find that Chan had left the stove on and forgot, or that she had wandered out into the city and got lost coming home — once, they had to call the police to bring her back. Finally, in order to have someone watch over her, they enrolled her in a nursing home in Gaithersburg, Maryland. That turned out to be a mistake.

Loneliness and social isolation are key predictors of depression and other mental health issues in seniors ... but it's particularly an issue for late-in-life immigrants.

I met Chan last year while reporting on mental health among the Asian-American elderly. I'd watched the effects of this kind of loneliness and social isolation on my grandparents in my own household — even if I hadn't recognized what it was at the time — and I wanted to dig into the issue some more. My grandmother visited our family and took care of me when I was a little girl, but because she never felt comfortable in Germany, England, or wherever my family lived at the time, she never stayed long. A few years ago, my parents invited her to come stay with us full time in the U.S. — not to take care of us children, since we had all grown and left the house, but so they could take care of her. Her husband had died a few years earlier, and she had been hospitalized for anemia.

While having loved ones watch over her and provide for her has been a boon for her health, she is isolated here. She doesn't drive, and she doesn't speak English. She leaves the house only once a week. The rest of the family, including her grandchildren, all chatter in rapid-fire English around her, only occasionally stopping to direct halting Chinese at her. She suffers from depression and has a history of eating disorders, neither of which my parents understand. After I began talking to other families, I realized she wasn't alone.

In many Asian cultures, it's common for grandparents to take care of, and even raise, grandchildren as their parents work. For grandparents whose children and grandchildren live in the United States, maintaining that tradition often means making a trek across the world. As the number of Asian-Americans in the United States increases, so too does the number of older immigrants from Asia (according to the State Department, 30,602 immigrants from Asia in 2014 were parents of current Asian-American U.S. citizens over the age of 21). Often these older immigrants don't speak English, and don't adapt to a new language and culture easily. Most can't drive and are thus confined to their child's house.

Research has shown that such circumstances of loneliness and social isolation are key predictors of depression and other mental health issues in seniors. Social isolation intensifies for many as they experience increasingly limited mobility, and their friends begin to die. But it's particularly an issue for what Abul Hossen of Shahjalal University of Science and Technology in Bangladesh terms "late-in-life immigrants," because, Hossen notes, of their "recent arrival, unfamiliar social environment, poverty, poor health and communication problems."

"At this point it's accepted that if they can't speak English, we'll get a family member to translate, and if not we'll just have to do our best."

The language barrier may be a significant factor: A 2011 University of California study of 20,712 Asian-American elders found that Korean, Chinese, and Vietnamese respondents — most of whom reported limited English proficiency — were more likely to express symptoms like hopelessness, worthlessness, or even major depression; but Japanese respondents — of whom 9 in 10 reported speaking English every well — were the least likely to report those same symptoms. Compared to non-Hispanic white respondents, all groups who were more likely to report distress were also less likely to have seen a mental health professional. Which is to say: Of those Asian-American seniors who might need help, very few of them actually seek it.

There are two likely reasons for this: the strong cultural stigma against mental illness, and the dearth of culturally appropriate support. Remarkably few mental health professionals speak Asian languages, and those who do tend to be concentrated in large metropolises such as New York City and Sacramento. A 2013 report of the U.S. health workforce noted a mere 2.8% of psychologists identified as Asian.

In addition, while nursing homes are required by law to provide interpreters for those with limited English proficiency, few do. Tony Chicotel, staff attorney for California Advocates for Nursing Home Reform], says it's a law that's not enforced. "I've seen a lot of citations for other infractions, but I've never seen a citation for this law," he said. "I think at this point it's just accepted that if they can't speak English, we'll just get a family member to translate and if not we'll just have to do our best." Chicotel also said that because effective long-term care relies on a resident-focused program with intake forms and constant feedback, language barriers in nursing homes can significantly decrease the quality of life for patients.

It's not just about the language barriers though — cultural barriers exist as well. Most nursing homes serve food and organize activities that Asian seniors aren't used to. Asian cultures often place importance on folk tradition for healing (such as ayurveda or traditional Chinese medicine), a sentiment not usually shared by doctors in traditional nursing homes.

Dr. Umair Shah, executive director at Harris County Public Health & Environmental Services in Texas, said this is a particularly relevant problem for the South Asian community. "As a physician, I've seen instances where a patient's form says clearly, 'No pork products,' because they're Muslim. But then bacon was served. If your spirituality was an important part of your identity and you were fed pork, you would feel spiritually betrayed," Shah said.

She spent her nights shivering under her blankets, unable to communicate her discomfort to her nurses.

Fortunately, there are people working to provide Asian-American elders with more opportunities to socialize and receive culturally appropriate services. Mental health professionals are experimenting with technological solutions that would help Asians in isolated communities access mental health care. For instance, Matthew Miller, associate professor at University of Maryland, is creating a Korean-language video series to educate Korean-American elders about mental health issues with strategies for coping and normalizing the experience.

In Texas, Yuri Jang is investigating the possibility of telecounseling for the elders. She first started on this project while working in Florida, where several Korean-Americans had contacted her and asked about mental health services. She looked for Korean-speaking mental health professionals, but couldn't find any in Florida. Jang knew of several in the New York City area so she launched a pilot telecounseling program to connect the two populations through video chat in a four-week, 14-client pilot program. Jang reported an extremely positive response to the program and hopes to scale the model.

A few assisted-living communities catering specifically to Asian seniors have also cropped up. In California, there's Aegis Gardens, designed specifically for Chinese-American residents in mind, with culturally appropriate designs, activities, and food; or Nikkei Senior Gardens, which caters specifically to Japanese-American residents. On the East Coast, the Kings Harbor Multicare Center serves traditional Indian food and offers Hindu prayer services.

In addition, efforts are underway around the country to reduce the amount of social isolation that older Asians face outside of these assisted-living homes: Houston, Washington, D.C., and Brooklyn are just some of the cities with community centers offering things like tai chi classes, games of Chinese chess, shared meals, on-site nurses, and transportation to off-site medical care.

Lin's House is one of these efforts, a single-family home at the end of a quiet suburban street in Gaithersburg, Maryland. It's one of the only Cantonese-speaking group homes in the area (when I contacted the county to see if there were any others, they said that they didn't keep records on language-specific long-term care facilities — a reality that makes it difficult for many Asian families to find appropriate care for their loved ones). Inside, a caregiver in house slippers is stirring a soup pot in the kitchen.

When institutional support fails, the onus is often on Asian-Americans to care for their older parents.

So Ying Chan sits in a chair in one of the corner bedrooms, her head to her chest, her rheumy eyes barely blinking. This is where I first met her, and it is a starkly different setting than the traditional nursing home from which she was transferred: There, she wasn't eating, because she wasn't used to the Western food they served. She spent her nights shivering under her blankets, unable to communicate her discomfort to her nurses, because the air conditioning was turned so low. She fell into an even deeper depression and tried to escape from the facility multiple times.

Shortly after Chan's family realized how much difficulty she was having, they contacted Lin's House and asked the founder, Susan Wong, who started the group home six years ago as she was retiring from a career in accounting, to help the older woman transition to the group home. Now that she's in a more familiar environment, Chan and her well-being have improved. She's calmer. She eats traditional Cantonese-style dishes (rice, stir-fried vegetables, and Cantonese-style chicken soup) and she gets to walk outside in the little garden behind the house. The residents chat in their native tongue, play games, or complete puzzles together. Chan still paces the floor when she's anxious, Wong said, but she no longer tries to run away. Chan's grandson, Jeff Man, now a grown man working as a filmmaker in California, visits when he can. He says she's started talking a bit more.

Still, he's torn between his own life across the country and a feeling of obligation toward the high-spirited grandmother who raised him. When institutional support fails again and again, the onus is often on Asian-Americans to care for their older parents — or grandparents. Even though caregiving can take an toll — in a 2011 report, 33% of Asian-American caregivers said the responsibility had a stressful impact on all their relationships, compared to 20% of the general population — it can still be hard to shirk a sense of guilt when relieved of that role. When So Ying Chan was struggling in her first nursing home, she would tell anyone who'd listen: "My son doesn't love me anymore."

For Man, it is a deep-seated stress. A few years ago, he dreamed he and his sister had gone to the park after visiting Lin's House. At the park, he saw a homeless woman who resembled his grandmother, but she disappeared. Together they searched the park for the woman, and when they finally found her, he was shocked to see she had tears in her eyes. "I've been looking all over for you," she told him. "I went grocery shopping and I got lost. That woman you've been visiting isn't me; it's an impostor. I'm so happy you found me at last."

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