Caregivers Break the Silence: Japanese Americans at Risk

Caregivers Break the Silence: Japanese Americans at Risk

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Photo: Frances Kakugawa, author of Breaking the Silence: A Caregiver’s Voice, at a book reading.

LOS ANGELES— When Frances Kakugawa’s mother was diagnosed with Alzheimer’s disease, she turned to poetry to express her emotions. Soon Kakugawa was able to see the gift in her mother’s dementia, leading her to develop ways to teach others how to channel their emotions in a constructive way.

An award-winning children’s author and poet, Kakugawa wrote Breaking the Silence: A Caregiver’s Voice, which has been acclaimed as a teaching tool for the field of gerontology. “In the Japanese culture, we try to keep things in the house,” Kakugawa said. Many believe it’s a sign of weakness to have to go to a support group.”

For Yourself

The Family Caregiver Alliance (FCA) advises caregivers to pay attention to their own care. Feelings of anger, anxiety, sadness, isolation, exhaustion—and then guilt for having these feelings—can exact a heavy toll.

FCA’s website notes, though, “Caregiving does not cause depression, nor will everyone who provides care experience the negative feelings that go with depression. But in an effort to provide the best possible care for a family member or friend, caregivers often sacrifice their own physical and emotional needs.”

The organization suggests:

Set realistic goals; break large tasks into several small ones.

Try to be with other people; confide in someone. Support groups can serve as an emotional outlet and an information resource.

Participate in activities, such as mild exercise, going to a movie, ballgame or a community event.

Let your family and friends help you.

Remember: Positive thinking will replace negative thinking.

FCA also has fact sheets for caregivers in several languages (although not in Japanese).

--Ellen Endo

She believes that more Japanese American (JA) caregivers would benefit from joining. Kakugawa conducts three such support groups in Northern California, teaching poetry and memoir-writing.“ Sansei are really very private people,” she lamented, saying she wishes more would take advantage of help that is available to them.

Caregiving and Confucian Values

Influenced by deeply rooted cultural beliefs, family members caring for Japanese American seniors—this country’s largest ethnic population over age 65—are vulnerable to ailments attributed to physical and psychological stress, say experts.

In separate studies conducted at Stanford with San Jose State University and in Hawaii, researchers found that while cultural values can help individuals cope with day-to-day challenges of caring for aging loved one, those same values can keep caregivers from addressing their own needs.

Researchers list eight cultural values, based in Confucianism and passed down from early immigrants (Issei) to subsequent generations, that influence behavior of American-born Japanese to some degree, even among those who considered themselves fully assimilated. Those values are:

gaman (internal strength and endurance)
shikataganai (acceptance, it cannot be helped)
oyakoko (filial piety, respect for elders)
giri (family obligation)
haji (shame)
enryo (reluctance to speak, refusal of assistance)
kodomo no tame ni (for the sake of the children)
hazukashii (embarrassment)

Palo Alto clinical psychologist Lisa M. Kinoshita and co-researcher Dolores Gallagher-Thompson, reporting in the journal, Clinical Gerontologist, state that such values served as coping mechanisms for the Issei struggling to survive in their adopted country. Issei turned to gaman/strength and shikataganai/acceptance when faced with adversity.

“Traditionally, Japanese American adult children are expected to care for their parents lovingly and with gratitude (oyakoko/filial piety and giri/family obligation), showing their appreciation for the care their parents provided to them during their childhood,” the clinicians reported. “It is believed that to not do so would bring great shame (haji/shame) to the family.”

Case Study of Nisei Woman

To illustrate their findings, Kinoshita and Gallagher-Thompson cited the case of a Nisei woman, 77, who was caregiver to her husband suffering from dementia.

The woman sought psychotherapy because she wanted her adult children and her daughter-in-law to help her with “socializing” her husband. When her children didn’t offer their help, Ms. S would become upset and frustrated. She relied on gaman/strength and shikataganai/acceptance) to allay her disappointment.

“Ms. S indicated that she experienced pain from chronic arthritis and gastrointestinal difficulty,” the study said. “Her primary care physician recommended surgery for the arthritis in her hands, but Ms. S had been reluctant to have surgery due to her ongoing caregiver responsibilities.”

According to a 1989 study by Evelyn Lee and Francis Lu published in the Journal of Traumatic Stress, “JA family members often send nonverbal messages” to one another which communicate that strong emotional displays or direct discussions about stressful experiences will not be tolerated. Therefore, silence related to an uncomfortable topic may occur.”

Kinoshita and Gallagher-Thompson reported that Ms. S expected her non-Japanese daughter-in-law to help with the caregiving responsibilities. When Ms. S’s unspoken expectations were not met, she became increasingly resentful.

The clinicians guided her in practicing assertive communication to address asking her children for help. “She soon discovered that all of her children were happy to assist her but had not realized her need because she did not directly communicate it to them,” the report stated.

Attitudes Changing

An estimated 30,000 JAs serve as informal caregivers in Los Angeles and Orange Counties alone, according to Los Angeles-based Keiro Senior HealthCare, and the numbers are increasing steadily. Steven P. Wallace, of UCLA’s Center for Health Policy Research and School of Public Health, predicts the number of Asian American elders will quintuple by 2050.

Nancy Hikoyeda, an ethnogeriatric specialist for the Stanford Geriatric Education Center and former director of the San Jose State University Gerontology Program, said enryo/refusal of assistance can prevent family caregivers from seeking professional help at an early stage, but she adds that attitudes toward institutionalization are changing, and Sansei (third generation) are more open to outside assistance than their parents or grandparents were.

In a 2010 report, entitled “Japanese American Older Adults,” Hikoyeda along with Marianne K.G. Tanabe of the Veterans Administration Pacific Islands Health Care Systems, asserted that kodomo no tame ni brings “an element of expectation from parents and sense of obligation on the part of the children to support and care for their parents.”

According to Hikoyeda and Tanabe, while JAs were less likely to place their elders in nursing homes when compared to their non-Asian American counterparts, the notion of oyakoko/filial piety is fading with increasing cultural integration and assimilation.

“Trends in nursing home statistics are expected to change,” they add.

Sansei Issues Emerge

Ms. D, a 65-year old Sansei, appeared cheerful and upbeat whenever she visited her dementia-afflicted mother. But soon after leaving her mother in the assisted living facility, Ms. D would sit in her car and sob. Her blood pressure became elevated, and she began to lose some of her hair.

Although she didn’t realize it, Ms. D was experiencing a form of depression over the loss of the mother she had known all of her life.

Three and a half years ago, Mr. A, a 59-year old Sansei, noticed that his parents’ forgetful “senior moments” were becoming more frequent.

“They didn’t seem to be able keep track of their meds, and I was worried about what they were eating and about whether they should be driving,” he recalled.

Rather than continue to be stressed over what to do, Mr. A decided to take full control. He contacted an assisted-living facility and put Mom and Dad on the waiting list.

After his parents were safely situated, Mr. A’s new concern is what will happen if their dementia progresses at a different rate. If one has a more debilitating form of dementia than the other, what if each parent requires a different level of care.

“If they have to be separated, that would be hard for them,” he worried.

Meanwhile, efforts to encourage his sibling to share the caregiving responsibilities on a regular basis have been unsuccessful.

“When I first noticed that our parents were going to need help, I asked my brother, ‘Why don’t we take turns?’ He did it at first, but that didn’t last very long,” Mr. A said.

“Working together smoothly for the benefit of a parent is often easier said than done. Old family patterns and unresolved issues often surface. We continue to play out the roles we fell into as children (the ‘good child,’ the ‘favorite child’). The caregiver may perceive more distant siblings as uncaring, critical or ‘in denial.’

According to the website Elder Care Team [] “While the primary caregiver may feel resentment because he/she is doing the lion’s share of the work, other siblings may feel shut out.”

Poetry in Family Conflict

Another emotional challenge adult children often face with a parent who has dementia is in their relationship with their mother or father.

Recently, someone in author Frances Kakugawa’s support group complained, “My mother just wants to push my buttons. She’s so negative.”

Kakugawa encouraged the individual to try writing poetry. Soon, she was able to regard her mother’s negativity differently. She began to see her Mom as full of love. In one of Kakugawa’s poems, “Plastic Orchids,” she describes how he mother, Matsue, 91, reacted when an aide addressed her by her first name and told her she loved her.

Matsue, perceiving the aide as insincere, muttered two harsh curse words to herself. Frances applauded this in her poem—a glimpse of the “real” Matsue, before she slides back into the fog of dementia.

This article is adapted from a story Ellen Endo wrote for Rafu Shimpo through the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.