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Role reversal

Fellowship Story Showcase

Role reversal

Picture of Maria Huynh
Caring for someone with Alzheimer’s disease
BN Magazine
Monday, December 1, 2008

Every day is a new one for Hong, who lives in Fresno, California. She still does not know what to expect each morning since her husband, Tuan, was diagnosed with Alzheimer’s disease nine years ago. “It was a shock to me and to my family when we found out,” she said. “There’s not even a Vietnamese word for this sickness.”

More than "I forgot"

Alzheimer’s disease is a progressive, degenerative, and fatal brain disease. It is the most common form of dementia, which is a progressive decline of a person’s cognitive function. In Alzheimer’s patients, the brain nerve cells no longer function normally, affecting the individual’s memory, thinking, and behavior. Alzheimer’s and other forms of dementia can leave the afflicted parent extremely dependent on others for their everyday living needs. According to the Alzheimer’s Association, an estimated 5.2 million Americans are afflicted with Alzheimer’s. By 2030, as many as eight million Americans will be diagnosed – a projected 50 percent increase over current cases. The most significant risk factor for Alzheimer’s disease is advancing age. There is no cure, only treatment.

American Association for Retired Persons (AARP) reports that there are approximately 50 million informal caregivers in the U.S., and 10 million of them are caring for a family member with Alzheimer’s disease or another form of dementia. I interviewed two Vietnamese American families and learned how they care for their loved ones with Alzheimer’s disease.

A wife's story

Tuan and Hong have been married for over 50 years. About 12 years ago, Hong began noticing her husband’s odd behavior. Tuan, who was very handy around the house, frequently asked her for his toolbox. “In the garage in the far left corner, I would tell him, where he always left it,” Hong recalled. He would ask that and other similar questions multiple times a day. When he took her grocery shopping, she noticed that he forgot where he parked the car. “It went on like this for a few more years”, Hong said. “Every time that I asked him about it, he would get angry.” Finally, she rallied the support of their two adult sons and pressured Tuan to see a doctor. Weeks later, Tuan finally relented. An MRI and results from the Mini-Mental State Exam (MMSE) and the Mattis Dementia Rating Scale – two psychological tests that examines cognitive impairment – suggested that Tuan has Alzheimer’s disease.

In addition to cooking meals, doing laundry, cleaning their house, taking him to his doctor appointments, and administering his medications, Hong now watches Tuan vigilantly. She said, “He forgets how to do things that he used to do every day. He forgets where he is.” On top of memory loss, Alzheimer patients tend to exhibit very different behaviors than before the disease. “He is a totally different person,” she said. “He used to be the most patient man in the world. Now, he’s not patient at all.” Recently, Hong had to move out of their bedroom. “He wakes up at 2 a.m. in the morning and turns on all the lights,” Hong says. She thinks the disease has affected his ability to communicate effectively so his frustration comes out in shouts of anger. “He cannot follow complete conversations anymore. Only bits and pieces of what people say.”

On Wednesday and Friday evenings, their 33-year old son Henry comes to his parents’ house to shave and bathe his father, and provide temporary relief for his mother. Even when her son is present, Tuan is not far from his wife’s watchful eye. During the weekends, the 37-year old son Thomas, comes with his young children. Both daughters-in-law also drop by throughout the week to check in with Hong and Tuan.

Families caught between two cultures

As Tuan’s story has shown, the family is a pivotal force and a main source of strength and support in Vietnamese American culture. Family members – especially wives and daughters – are the primary caregivers when someone falls ill.

The 2000 Census found that over 90 percent of Vietnamese Americans in California aged 65 and over are living in “family households.” This contrasts with an over 66 percent of total Californians. The low percentage of Vietnamese Americans in institutional housing demonstrates the strong respect and cultural influence that many family and community members have for elders. It also reflects traditional cultural and social norms of “keeping it in the family” – to keep the sick or disabled at home and informally cared for by family members. Going outside is interpreted as weakness or a failure of meeting one’s family commitments.

Aging spouses and parents with declining health raise uncomfortable questions about socially and culturally taboo topics, including seeking outside help from professional caregivers and the possibility of placing one’s parent into institutional care. It is only in exceptional cases, such as Alzheimer’s disease, where the person is too sick that the family considers and in some cases ultimately turns to institutional care. Cultural factors such as filial piety and privacy play an influential role in caretaking duties. The shame and guilt of not caring for or not being able to care for family members can be crippling.

Family members wrestling with emotionally wrenching decisions worry about finding the right kind of care or care facility for their elderly and frail spouse or parent. Asian American elders have cultural and linguistics needs that are absent in most typical care communities. Like Tuan, most Asian American elders are immigrants, do not speak English and can only communicate effectively in their native tongue. The 2000 Census found that in California, 75 percent of Vietnamese Americans aged 65 and over speak English “not well” or “not at all.” Asian American elders expect deference and respect from those who are younger – including health care staff. All of these factors lead many Asian American adult children to serve as informal caregivers to their ailing parents. A 2003 report by the Southeast Asian Resource Action Center (SEARAC) raises questions about the availability of appropriate institutional care for elderly Southeast Asian Americans from Vietnam, Cambodia, and Laos.

This next story demonstrates the role of many Vietnamese-American adult children in caring for their ill parent.

When mom is sick...

When 54-year old My was diagnosed with early onset Alzheimer’s seven years ago, her four adult children, then scattered across the globe, returned home and moved into one house with their mom in Alameda, California. Xuan, My’s elder daughter, takes the lead in managing her mom’s health care needs. Together with her siblings, they divide and conquer to provide whatever support their mother requires. On the refrigerator in the family’s kitchen is a hand-written calendar that equally splits each sibling’s caretaking responsibilities throughout the month. Each day is split into three eight-hour shifts. During his or her duty time, the sibling helps My by preparing meals, assisting her with toileting, bathing, dressing, mixing her pills into her food, and keeping her active and engaged. Medicaid, known as Medi-Cal in California, provides for a home health aid for 200 hours a month to stay with My. Even so, one of My’s adult children is usually nearby.

After four years of living in one house, Xuan and her siblings still encounter growing challenges in their situation. My’s Alzheimer’s has gotten progressively worse. “She no longer knows that we are her children. She doesn’t even know that she’s sick,” said her second eldest daughter, Phuong. My cannot speak intelligibly and communicates by facial expressions, nods or shakes of the head, or undefined sounds and grunts. “When she acts out,” said Xuan, “we have to figure out if she’s hungry, need to go to the bathroom or something else.” A stroke six months ago further incapacitated My, leaving her left side weak and with limited mobility. She now requires more care than her children can provide at home.

Her son and daughters also face additional challenges among them, with the stress and tension of caring for a sick parent and living in close quarters. Each sibling – whose ages range from mid-20s to mid-30s – faces changing life circumstances. “I had a life before this. I had a good job in Los Angeles. I had a boyfriend in San Diego,” said Xuan quietly. She took a temporary leave of absence from work this summer to explore potential long-term care options for her mom. Xuan would have to find a place that pleases everybody.

Toll on Asian-American caregiviers

Tuan and My’s personal stories have shown that dutiful Vietnamese-American spouses and children take it upon themselves to care for their loved ones. A research study by the National Association of State Units on Aging found that two in five Asian American caregivers, like My’s daughter Xuan, have taken time off from work in the past five years to help care for family members. A survey sponsored by AARP found that 75 percent of Asian Americans aged 45 to 55 years are most likely to feel guilty about not doing enough for their parents, followed by 65 percent of Latinos, 54 percent of African Americans, and 44 percent of Whites. Three-quarters of Asian Americans aged 45 to 55 years say children in their families should care for their elders. The survey also found that two in five Asian Americans aged 45 to 55 years provide eldercare or help parents financially. These numbers clearly demonstrate the vast cultural and community expectations and demands facing Asian American adult children.

Asian American caregivers often do not seek non-familial help and feel as though they have nowhere to turn for their emotional or psychological support. Not only do many of these adult children have to manage their own lives, careers, and family, they are also responsible for managing and taking care of a dependent loved one. All of these elements contribute to “caregiver burnout,” as Xuan, her siblings and Hong can attest. Health professionals have recognized the strain on these family members who serve as caregivers can endure, including higher rates of depression, hypertension, diabetes, sleep disorder, heart disease, and even death.

On top of all of these cultural, social, emotional, personal, and family issues, there is also the economic quandary facing all of these patients and family members. How to pay for long-term care? With the sky-high cost of elderly care ranging from $20 an hour for a home health aide to $80,000 a year for a nursing home, affordability is usually the number one determining factor in each family’s choice of home health aides, adult care centers, assisted living and nursing homes. Medicare does not pay for nursing homes. Medicaid does cover expenses for various types of long-term care, but the participant and the facility must meet eligibility requirements.

I spent the last few months researching long-term eldercare options for Vietnamese or other Asian American seniors and their families. The consensus is that options are limited and there is significant opportunity for more service providers to enter this niche ethnic market. Below are some resources that would be helpful to anyone exploring long-term care options for elderly Asian Americans.

In closing, long-term care is a big-time business that provides assistance to the elderly, frail, and sick. Asian American family members who are caring for someone with Alzheimer’s or other dementia should know that there is a wide spectrum of options that ranges from home care to institutional care. There exist many alternatives to nursing homes.

The Alzheimer’s Association reports that the direct costs to Medicare and Medicaid for care of people with Alzheimer’s and other dementias and the indirect costs to business for employees who are caregivers of these persons amount to more than $148 billion annually. Long-term care providers are increasingly recognizing the changing demographics of and the needs of the local populations that they serve. More and more culturally competent and linguistically appropriate long-term care options are becoming a reality for Asian American elders.

My‘s children are continuing their search for a culturally competent adult day care center or an assisted living residence, preferably one that has a dementia unit. Tuan remains at home with Hong.

Special thanks to the family members for sharing their personal stories and their willingness to be interviewed for this article. Many thanks to the California Endowment National Health Journalism Fellowship, Michelle Levander, and Martha Shirk for the opportunity and their continued support.

Maria Huynh was born in My Tho, Viet Nam. Maria is currently a writer based in Washington, DC who can be reached at huynh.maria@gmail.com.

© 2008 BN Magazine (used with permission)