Cultural Challenges of Caregiving for Our Asian American Elderly

“I wasn’t there for them enough,” I tell myself on every anniversary of my father’s death since February 2021, and again every November, the month in which my mother suffered a minor stroke in 2016. On the heels of remembering another anniversary since losing my father, I am reminded that in Asian American households, caregiving flows in every direction: from grandparents to their grandchildren, parents to their own parents, and oftentimes, children to their parents.

The expectation, however, falls hardest on women as the primary caregivers and sometimes breadwinners. This was the case for my mother when I was growing up, who bore the burden of caring for a partner suffering from PTSD and her children, on top of facing challenges in accessing culturally competent and affordable healthcare for herself and for us. 

While my mother was working, the person in my family least capable of caring for my brother and me was the only person available to do so: my father. He was tasked with caring for us while grappling with complex, chronic PTSD, as a result of being part of the American-led military campaign called the Secret War in Laos that occurred during the Vietnam War. The trauma from that experience permeated every aspect, touched every person, and affected every milestone for the rest of my father’s life. My parents didn’t have access to necessary resources that could have helped heal some of the intergenerational trauma before it reached us full force.

I was a teenager the first time that I truly recognized the typical parent-child relationship was becoming muddied; it was one of the first times that I had to de-escalate an altercation between my father and mother, what I now call “episodes” of irrational, threatening behavior. He’d had nowhere else to go and had recently returned to live with us after being released from prison. Being able to see his physical scars made it easier to recognize when he was ailing from aches from a gunshot wound in his knee or having trouble using the hand that had been injured during the war. But the mental and emotional scars were harder to envision, making it difficult to acknowledge the place from which his violent behavior arose. 

Looking back, there were moments as a child that I’d curiously observed him — immobilized, still, and distant — during severe thunderstorms so common to Texas summers. Now, I suspect that he was experiencing flashbacks, battling memories that took him back to similar conditions, when he was fighting as part of the special guerilla unit in the war-torn jungles of Laos.

Making Hard Decisions Around Caregiving

It eventually became hard to maintain his health at home and even harder to endure his actions that were a result of his trauma, and we had to move his care. Caring for an abusive parent is complex, and something I wouldn’t wish for anyone, and yet it is something our family, and other families like ours, face.

We sought care for our elderly father in a skilled nursing facility, an act uncommon in our culture — out of a sense of duty — but necessary for our family. He lived at the Traymore in Dallas, a dusty place with age-yellowed walls, closest to my brother who would visit when he could and the last place I would see him in person, in January 2019. Behavioral problems caused my eldest sister to transfer him to another relatively decent facility that accepted Medicare. No one in either facility spoke Lao, my father’s mother tongue. I am still haunted by the fact that my father died alone in his room from COVID complications at a facility during the height of the pandemic.

Amidst figuring out the best place for our father, our mother had a stroke, and we found ourselves making caregiving decisions for them both. On top of providing the typical support that a stroke survivor needs (transportation, assistance with daily functions, physical therapy coordination, and doctor and specialist visits), my siblings and I were also her medical translators, culturally considerate assistants, and navigators of new systems and specialists. Even as a communication professional and writer, I occasionally struggled to translate terms that I’d never even heard in Lao before; tools like Google Translate would come in handy, but could never replace a professional translator. In our case, my siblings and I had a healthy relationship with my mother, but for some families, a strained relationship, power dynamics, or emotional ties could affect the quality, accuracy, and truth of what one is choosing to share or keep from another.

Risks, such as misunderstanding care needs and sharing inaccurate patient history, arise when an interpreter or medical professional fluent in the language cannot be present in these situations. On the more emotional side, what child should have to deliver the news to their parent that they are dealing with a complex health condition or, worse, a life-threatening disease? It’s a laborious activity that Asian Americans are more likely to be providing for a parent than others, which requires juggling full-time or multiple jobs outside of the home, and doing the work of a home health aide.

Thirty-six percent of Laotians in America report speaking English less than “very well,” and my mother is one of them. Aside from myself and my sister, no one in the urgent care facility could communicate with my mother the day of her stroke. For my father, my brother and eldest sister were translators, coordinators, and co-caregivers with the nursing facility workers. It is no exaggeration that my dad could not clearly or comfortably communicate with the people around him, something common for our elders.

Seeking Solutions for Families in Need

My mother’s story of struggle and strength is how I came to be involved with the National Asian Pacific American Women’s Forum (NAPAWF), which is working to raise awareness on issues related to healthcare access for Asian American and Pacific Islander women and their families.

My family was placed in Texas in 1989 as political refugees and was granted lawful permanent resident status as part of the U.S.’s resettlement process for Southeast Asians displaced by the multiple conflicts in their homelands. Had my parents arrived in this decade and endured their health experiences now, they would not have had the access and ability to use Medicare to cover their medical bills, and the medical debt would have fallen on myself and my siblings to handle. This is the story of countless families today. Currently, even those with lawful permanent resident status must wait five years for access to coverage. In most states, undocumented immigrants have zero access to any kind of health insurance, leaving them to rely on emergency care. 

Many Asian American families continue to face challenges such as affordability, culturally competent care, and language access while caring for their aging family members. Our Southeast Asian elders, in particular, had to leave everything behind as they sought asylum from the aftermath of war, and as they age, we must ensure that they’re not left behind here.

We must also tend to the wellbeing of the caregivers and ourselves. We overlook the mental health and physical wellness of caregivers, and of ourselves, when acting in service of others, but this is unsustainable. Asian American women caregivers need better support systems to alleviate some of the weight that they carry. Addressing the healthcare disparities our communities face will help to ensure that Asian American caregivers have the support they need to live healthy, full lives with their families.

As Asian American women continue to carry the weight of caregiving, both in their families and as part of the underpaid care workforce, our communities cannot afford to lose critical support systems like Medicaid. Congress is considering cuts that would strip healthcare access from millions, including children, seniors, people with disabilities, immigrants, and low-income families, and would devastate caregivers and the people who depend on them. 

Decisions in Washington, DC shape who gets care — and who gets left behind. It’s time our communities are seen, heard, and counted. You can help protect access to care. Raise your voice. Share your story. 

Images courtesy of the author. Cover image by Elvie Mae Parian.