Things You Don’t Want to Think About, But Should
My grandmother visibly worked to form words, her dry mouth—a sign of her body’s refusal to absorb even water—making it difficult to speak. I leaned into my computer screen, trying to make out what she was saying. “Please come to Japan,” she finally managed in English. I said I would, knowing that it was a lie. Amidst a global pandemic, I would not make it back to see her before her death.
Her words haunted me after she passed. Why was I an ocean away? Why could she not have been here, in the U.S.? Yet as I heard about those dying in America, I became grateful that my grandmother had been in Japan.
Death and the end-of-life care that often precedes it are not normally at the forefront of national conversation. We avoid thinking about aging and death, sequestering the elderly into nursing homes. This past year, that changed.
As the pandemic ravaged American nursing homes, these topics were dragged into the limelight — and what was illuminated wasn’t pretty. There have been more than 170,000 deaths among long-term care residents and staff members, 33% of America’s COVID-19-related fatalities. A study “revealed concerns including extreme weight loss, dehydration, untreated bedsores, inadequate hygiene, mental and physical decline, and inappropriate use of psychotropic medications among nursing home residents.” Much of this has been caused by insufficient personnel, with 28% of nursing homes reporting direct-care staffing shortages since last June, leading to lower standards of care.
While it took a pandemic to raise awareness, U.S. long-term care facilities have always lacked adequate staffing. Consequently, the 1.3 million Americans living in nursing homes as of 2015 are often depersonalized in a system that prioritizes keeping the elderly alive at the cost of quality of life, where the need for efficiency results in sterile experiences without personal touches. Patients aren’t asked about hobbies or interests, but are rather shuttled into generic activities like bingo; to make meals easier for staff, patients eat simultaneously, rather than eating when they are hungry. But this doesn’t have to be the way that we face old age. Many countries invest in geriatric care, allowing people to grow old with dignity.
My grandmother spent her last days at home with family, attended to by professionals who cared for her not only medically, but also personally. She developed a rapport with a nurse who visited her house to help with baths and quipped with her in English, knowing that my grandmother was proud of her language skills. She beamed when the nurse brushed her hair and applied makeup, despite her being bedridden.
This is in large part because the Japanese government has prioritized geriatric care. Starting in the late 1980s, Japan’s rapidly aging population forced the government to focus on policies to support the elderly and relieve burdens on families. In 2000, Japan instated a mandatory insurance program called Long-Term Care Insurance (LTCI), subsidizing senior care. At the core of this system are certified care managers, geriatric service providers (often nurses, therapists, and social workers) with 5+ years of experience who are responsible for analyzing the needs of and creating a customized care plan for their elderly clients. They help to install handrails in homes, rent mechanized beds or wheelchairs, coordinate visits from doctors and nurses, and assist with bathing and meals.
Medicare, the American health insurance program for those 65+, is starkly cold in contrast. While Medicare provides coverage for medical services at home, in hospitals, and in long-term care facilities, this coverage is restricted to “skilled” care from nurses or doctors. It excludes any custodial, non-skilled, or long-term care activities like bathing, eating, and using the bathroom. Many Americans are thus either precluded from receiving the kind of professional, humanized care that my grandmother enjoyed, or their families need to bear the cost.
The push for a more expansive American geriatric welfare system isn’t without opposition. Some argue that America’s low levels of social benefits have spurred the elderly to continue to work, in turn improving their health and happiness. Others point to the cost: in 2018, the Japanese social welfare system cost 121.3 trillion yen, roughly $1.1 trillion dollars.
These objections miss the larger point: these services are necessary and worth the cost. Most of us, regardless of age, desire to live with purpose, but there will inevitably come a point when our bodies and minds will prevent us from doing so. When that day comes, we shouldn’t have to worry about whether we will be able to live out the rest of our days with dignity. We need to invest in a system that recognizes and respects our humanity, regardless of income. This could take the form of investment in nursing homes, ensuring adequate staffing to allow for more individualized attention. But after a year when so many were prevented from being with their elderly loved ones during their last days, the difference between nursing homes and at-home care feels ever more prominent.
That I couldn’t make it back to say goodbye to my grandmother will forever weigh on me. But I know that she passed away surrounded by family and treated with care and dignity to the end. In a year when there was so little to be grateful for, I remain thankful for that.