By Mahlon Meyer
Northwest Asian Weekly
Last week, in a stunning broadening of policy, Washington state officials said they would vaccinate all people over 70 early this year. The announcement, on Jan. 6, came within days after a coalition of over 200 individuals and organizations representing communities of color asked the state to vaccinate multigenerational households in which older people are cared for at home.
“WE DID IT!! (mostly…),” Trang Tu, the organizer of the coalition, wrote to its members the day of the announcement. At press time, however, some worried that, despite the change, disorder in distributing the vaccine could favor those with connections and privilege.
Moreover, the state’s new policy neglects the coalition’s other request: that all caregivers in such households be vaccinated as well.
Under the new policy, all adults over 50 would also be vaccinated in the second tier, known as 1b. But in many multigenerational households, it is younger caregivers that provide much, if not all, of the care.
Trang Tu feeding her mother, before the pandemic (Courtesy of Trang Tu)
Tu, for instance, at 48, is not covered under the new state guidelines. She is her 90-year-old mother’s sole caregiver. Every day, she spoon feeds her mother, bathes her with a sponge, and lifts her in and out of bed. Tu, who has undergraduate and graduate degrees from Harvard, sings Vietnamese and French songs with her, which her mother taught her in childhood. Her mother, who is stricken with dementia, can no longer remember the words, but hums along. Sometimes she chants mindlessly. Tu’s wrists have become injured from gently holding her mother’s hands as she guides her around the room.
She has been caring for her mother full-time for six years. Before COVID-19 hit, she had occasional visits from siblings, who would help out. But now she takes care of her mother on her own from 8 a.m. until midnight. The rest of the time, she has a baby monitor, a small screen attached to a camera, so she can remotely view her mother.
The rapid turnaround in the state’s policy came as somewhat of a surprise, even to Tu, who has been advocating for over a month, ever since she heard that the state and the federal government would vaccinate older people living in nursing homes and low-income housing first. Such a schedule would have neglected people such as her mother for up to a year until all essential workers were vaccinated first.
But the state’s announcement showed responsiveness to the issues she raised in a letter written to Gov. Jay Inslee and Secretary of Health Umair Shah late last month.
In an email, Tu said she was particularly heartened by comments made by Assistant Health Secretary Michelle Roberts.
“We also really wanted to look at those multi-generational households, especially families caring for elders in their home. That was really an inequity in 1a, just focusing on vaccination to people in long-term care facilities,” said Roberts, referring to the first part of the first round of vaccines. Her remarks came during a press conference on Jan. 6, when the state announced the changed guidelines.
“We know many families take care of elders in their homes and we want to make sure we are reaching those families as well, to protect those most at risk. That is an input we’ve heard from the community and an example of how we are using community input to guide our decisions,” said Roberts.
King County last week also announced it would allot $7 million to set up two vaccination sites “likely” in South King County and assemble mobile vaccination teams for homebound elders. More details were not immediately forthcoming.
The announcements may have quelled a great deal of despair across communities of color in the state.
Before the policy change was announced, many leaders of Asian American and other traditionally marginalized communities saw the neglect as yet another oversight in a system that has overlooked their particular cultural and economic realities.
“Responsible administrators have not taken appropriate effort or time to understand and properly prioritize the fair distribution of medically related support for the various unique cultural situations, especially related to dependent elders in home/family care,” Tomio Moriguchi, one of the founders of the Keiro long-term care community, wrote state leaders, before the announcement.
Rep. My-Linh Thai, the first refugee elected to the state legislature, said that, like Tu, she had cared for her mother, in her case, when she had cancer, along with her husband’s grandmother, who had dementia. But she was grateful for Tu for reminding her, in the onslaught of the pandemic, of the need to support multigenerational families.
“The system wanted to find the most efficient way, but it was not built with people like Trang’s family in mind,” she said in an interview.
But Asian Americans make up almost 8% of the population of Washington state. Latinos make up about 12% and Blacks 4%. These communities, along with other communities of color, immigrants, and refugees, often care for their elders at home.
Besides, such statistics do not reflect economic disparities, since lower income families of any ethnicity can often not afford long-term care facilities.
Meanwhile, the situation here reflects national trends.
In her letter, Tu cited the National Asian Pacific Center on Aging, which found that 42% of Asian American and Pacific Islanders (AAPIs) are caregivers, compared with 22% of the general population.
Such a practice is reflected in the experience of the International Community Health Service (ICHS) in Seattle, which had over 140,000 visits and 460,000 health encounters, including educational outreach, last year.
Over 50% of the patients needed interpreting in over 50 languages, and most are API, East African, Eastern European and Latino, according to Teresita Batayola, president and CEO of ICHS.
Rimi Afroze, program manager of the Aging and Disability Services of Neighborhood House, said the mainstream healthcare system has long overlooked the particular needs of immigrant, refugee, and marginalized populations.
During the pandemic, she “faced huge roadblocks” in trying to find culturally appropriate support for homebound elders who were becoming increasingly depressed and anxious, such as home delivered food that they could eat or online support groups in their languages.
“We are following a ‘one prescription to treat all’ strategy,” she said. “This cannot help communities of color.”
Nowhere is this clearer than in the case of Asia Lor, 24, a second-generation Hmong immigrant who is taking care of her grandmother, a cancer survivor, at home. Because of her age, she is not eligible for a vaccine in the first tier of the state’s guidelines, and may have to wait up to a year.
Of the 2,400 Hmong people who live in Washington state, 100% take care of their elders at home, said Cynthia Yongvang, executive director of the Hmong Association of Washington.
“It was drilled into us from the day we were born that it is our responsibility to take care of our elders until the day they die,” said Yongvang, in an interview.
Even if families decided to place their elders in congregate care, and could afford it, such places would probably not cater to their particular linguistic, cultural, and dietary needs.
“Our elders don’t thrive in mainstream nursing homes, especially in places that are not culturally supportive,” said state Rep. Sharon Tomiko Santos, in an interview.
For Tu, this has meant years of finding bright spots among her mother’s decline. Years earlier, she took her mother to their garden, to paint, then to Goodwill to find matching frames.
She began to keep a blog to help her sort through challenging moments. One day, she found her mother hallucinating as if she were still the caregiver, talking to her children.
“Gently, she asked if we were tired. She kept telling us to go ahead and rest, sleep. She said she’d just lie over here, and we could lie over there, next to her. She asked what we wanted to eat, and she said, ‘Tell me and I’ll make it.’ She said our dad would be home soon,” Tu wrote.
Tu’s dad had been dead for decades.
Three years ago, her mother, with tears in her eyes, suddenly said, “I don’t know who I am.”
Now she mostly chants or sings aimlessly, in a wandering, tired, and sometimes distraught voice.
Mahlon can be reached at firstname.lastname@example.org.