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Role Reversal: Caring for Someone with Alzheimer's

BN Magazine, News Feature, Maria Huynh Posted: Oct 03, 2008

Editor's Note: There are approximately 50 million informal caregivers in the United States, and a fifth of them are caring for a family member with dementia, including Alzheimer's disease. Vietnamese-American caretakers, reports BN Magazine writer Maria Huynh, face vast cultural and community expectations when caring for an elderly parent with Alzheimer's.

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 where his toolbox was. She would tell him it was in the garage, where he always left it, Hong recalled. 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. He was diagnosed with Alzheimers, the most common form of dementia.

Alzheimer's disease is a progressive, degenerative and fatal brain disease, where the brain nerve cells no longer function normally, affecting the individual's memory and thinking. People with Alzheimer's and other forms of dementia become extremely dependent on others for their everyday living needs.

In addition to cooking meals, doing laundry, cleaning their house, taking him to his doctors appointments and administering his medications, Hong now watches Tuan vigilantly. He forgets where he is," Hong said.

An Alzheimers patients behavior often changes significantly. "He is a totally different person," Hong said. "He used to be the most patient man in the world. Now, he's not patient at all." Recently, Hong moved out of their bedroom because Tuan began waking up at 2 a.m. and turning on all the lights.

On Wednesday and Friday evenings, their 33-year-old son Henry comes over to shave and bathe his father and provide temporary relief for his mother. But even at those times, Tuan is not far from his wife's watchful eye. During the weekends, their 37-year-old son Thomas comes with his young children. Both daughters-in-law also drop by throughout the week to see how Tuan is doing.

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 older are living in "family households." The low percentage of Vietnamese Americans in institutional housing demonstrates the strong respect and cultural influence that many family and community members have for their 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. Institutionalizing elders is interpreted as 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 when a family member is stricken with Alzheimer's disease, that the family 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 for their elderly and frail spouse or parent. Asian-American elders have unique 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."

Additionally, 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.

When 54-year-old My was diagnosed with the early onset of Alzheimer's seven years ago, her four adult children, then scattered across the globe, returned home and moved into a house with their mother in Alameda, Calif. Although the siblings share in care giving, Xuan, My's eldest daughter, plays the lead role.

On the refrigerator in the family's kitchen is a hand-written calendar that spells out each ones responsibilities. 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. Even though a home health aide is with My for the 200 hours a month Medicaid pays for, one of My's children is usually nearby.

After four years of living together in one house, Xuan and her siblings still encounter challenges. 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 Mys 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, needs 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. The children, whose ages range from the mid-20s to the mid-30s face 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.

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.

Asian American caregivers often do not seek non-familial help. They feel as though they have nowhere to turn for their emotional or psychological support. "Caregiver burnout," is not uncommon among them. Caregivers also experience a higher rate of depression, hypertension, diabetes, sleep disorder and heart disease.

With the cost of elder 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 the kind of care the elder receives. 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.

Asian American family members who are caring for someone with Alzheimer's or other forms of dementia should know that there is a wide spectrum of options that ranges from home care to institutional care.

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.

The families interviewed in the story declined to give their last names.

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.

Related Articles:

Madness, Demons, or Loss of Soul: Dementia in Asian Elders

Labor of Love Can be Financially Draining

Rethinking Senior Services as Demographics Change

Aging in a Foreign Land

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