This article first appeared on CNN.com. Read the original there.
My grandmother, Han Fong Hwu, died on Mother’s Day.
She was my first caregiver – after my parents – and through my whole adult life, despite lack of success, she never stopped trying to teach me mahjong. The sound of ceramic-like, plastic mahjong tiles clicking against one another can only be associated with her.
She taught me how to steam a fish in the microwave, among many other not-so-traditional Chinese cooking secrets. But more importantly, her lessons traversed from the basics — potty training me, teaching me my first words in Mandarin — to the values that have provided me with both a north star and a road map: focus on the positive but don’t ignore things that need attention, work hard but don’t forget to eat, find the joy but don’t be afraid of hardship, don’t take good people for granted and always be kind and compassionate.
She didn’t die of Covid-19; she was simply at the end of her long, full life, but I lost her amid unprecedented loss in the US.
Early in the pandemic, my sister had called to tell me, “If you want to say goodbye, you should come soon,” and I was able to visit for 10 days just before my grandmother died. As the pandemic has so cruelly prohibited many people from saying goodbye to their loved ones in their final days, I will always be grateful to have had the opportunity to spend some of her final days with her before she took her last breath at 94 years old.
The process of saying goodbye occurred amidst revelations that only crises can bring forward.
Among many things, how we care for one another — at all stages of life — has come to the forefront.
From care for newborns, and their mothers, to care for our elders and people with disabilities, it’s all connected — a trickle-down effect — and this country lags behind other developed countries in offering supportive services to those in need, as well as their families.
Approximately 3.7 million babies are born in the US yearly, and the 10,000 people turning 65 per day are living longer than ever, thanks to advancements in health and technology over recent decades. As more people prefer to age in place — a 2018 AARP survey found that three out of four adults over age 50 prefer to stay in their homes as they age — we have an urgent need to grow our homecare workforce to provide the critical services that enable them to make that choice.
Simultaneously, 70% of mothers with children younger than 18 are working outside the home, with about 75% of that group working full-time, according to the Pew Research Center. Meanwhile, the US has no national standards on paid parental leave — let alone paid family and medical leave — unlike nearly all other industrialized nations. And a lack of affordable childcare options results in almost half of families with young children struggling to find the childcare they need, according to an analysis by Center for American Progress.
The convergence of these changing demographics — aging parents and more working moms — has resulted in middle aged adults pressed on both sides of the generational spectrum trying to find the care they need for their children and aging parent(s). They’re called the “Sandwich Generation.”
The risks of our dysfunctional care systems were fully revealed in March, as we all watched older people being evacuated from nursing homes in Kirkland, Washington — the first epicenter of the coronavirus outbreak in the US. Television news cameras looped footage of stretchers carrying both victims of the pandemic and the care workers most proximate to them. My heart broke for them and for their families, and I thought of all who would be scrambling to figure out how to make sure their loved ones received the care they needed, as their inadequate, limited options vanished overnight.
Our society struggles with elder care: we have a cultural fear of aging and we do not have a plan for the care that we need. A 2019 survey by Caring Across Generations and the Women’s Alzheimer’s Movement revealed that while the average American will incur $138,000 in long-term care costs, most Americans do not have a long-term care plan in place, and two in three Americans have not started saving any money for long-term care Lack of funding and flexibility in our national policies also add to the struggles. Add to this the fact that there’s still a bias toward institutional, nursing home care.
Many years ago, I had my first interaction with nursing homes as my paternal grandfather needed care in the final months before he passed away at 93.
For most of his life he did tai chi, and consciously or not, we avoided the idea that he might become frail, too frail to live independently. My father’s work required frequent travel, including overseas. When my grandfather began to get sick, my father’s attempts to find in-home care could not catch up to the rapid decline in my grandfather’s health. My sister and I were still in school and working 3,000 miles away.
As my grandfather lost his vision and other functions, my family was unable to find the appropriate home care support to meet his needs, and we had to place him in a nursing home, where he spent his final months. It wasn’t what he wanted, and he quickly became a shell of himself; he shared a room with half a dozen other people, all waiting out their last days as though they held no value. He stopped talking and didn’t eat the food the nursing home provided. I wish we’d been able to find the care to support a dignified quality of life at the last stage, rather than fit the last of his life into the care that we could find.
I know not all nursing homes are like the one my grandfather lived in. And there’s been a long-standing effort to change the culture of nursing homes. But most people cannot afford the long-term care insurance that would help ensure that they are placed in a higher quality nursing home. In an economy where the median US household income is about $62,000 per year, paying out of pocket for long-term care is impossible for most.
So, we rely upon Medicaid, which has income requirements, and is biased toward institutional or nursing home care, because it doesn’t require states to provide home care. This creates an environment where state funding can vary widely as coverage is not required, resulting in more than 800,000 people on wait lists for home care nationally.
My grandmother’s experience with care stood in stark contrast. Learning from our experience with my grandfather, we were better prepared for my grandmother’s aging. When she began to need assistance to stay in her home, we found support from caring home care workers, who accompanied her over many years as she became more frail. They, together with her children, ensured a quality of life for my grandmother — in her own home, where she felt most comfortable — to allow her to continue to experience life as she aged.
She continued to trounce me at mahjong through her 80’s, was active in her church, even sang in her church choir and she continued to enrich our family enormously. Nearly two years ago, my grandmother suffered a stroke, and she never fully recovered. My mother was fortunately able to retire and they moved in together. With the support of home care workers, we were able to keep her in the comfort of her home until she left us.
The difference between the care received by my grandfather and grandmother demonstrates the challenge we face when our society has not figured out how to provide care for all stages of life. But it’s hard to change what you don’t want to confront. Without prioritizing care, and having a plan, our loved ones end up paying the price — a sober reality coming into acute focus now.
I am not an expert on grief. But I do know that we have collectively experienced unspeakable grief. Millions of us have grieved the loss of someone we loved, or grieved with someone close to us who has. Healthcare workers on the frontlines are grieving the losses of their patients, whose lives they fought to save.
My grief over losing my grandmother is matched only by my heartbreak at what we have endured as a nation in the last six months. All of this without being able to safely come gather together and have the traditional rituals that help us make meaning and bring closure to loss, share in grief, and be in community.
Our care infrastructure and social safety net can no longer be deemed too costly, now that we’ve seen the government pull together relief packages of previously unimaginable size in record time. The care of our loved ones, our elders and others in need of assistance can never be sidelined again, now that we are reminded of how interconnected we are.