The following is an excerpt from the bookThe Age of Dignityby Ai-Jen Poo (The New Press, 2016):
My father’s father, Liang Shao Pu, lived to the age of ninety-three. A lifelong student and then teacher of tai chi and a diehard Wheel of Fortune fan, he had a slow, deepâ€‘throated laugh that never failed to infect my sister and me, sending us into spasms of giggles. After moving from Taiwan to the United States to be close to his children and grandchildren, my grandfather often picked us up from school, the silhouette of his baseball cap visible from down the block. He was never late.
My grandfather quietly sustained the heartbreaks of my parents’ divorce, the passing of most of his friends, and then the loss of his wife of more than forty years. After my grandmother’s stroke, she could no longer care for herself. With tremendous courage and love, for years he cooked every meal, talked to her, and kept her comfortable until the end. One of my greatest regrets in life is that we did not provide him with the same comfort and care in the final moments of his life.
After repeated strokes, my grandfather’s condition had deteriorated to the point that my dad no longer felt capable of providing the support he needed to stay at home and could not find appropriate home care support, so my grandfather was placed in a nursing home, against his wishes. I visited my grandfather there before he passed away.
My grandfather’s bed was along a wall in a large, dark roomwith six other people, half of whom were completely silent, while the other half expressed their misery in loud, painful cries. The room lights were kept off, while a sickly fluorescent light in the hallway flickered. The place smelled like mold and death. It was my heartâ€‘wrenching introduction to dehumanizing institutional care.
When I arrived at his bedside, my grandfather was distressed. He believed the nursing home staff was trying to poison him. He had not slept or eaten for some time. He was frightened and in pain. He was a shadow of the person I knew growing up. I was furious and devastated.
After three months, he passed away in that facility. I almost feel as though he died the moment he arrived there; his dignity was stripped away upon entry. My father, my sister, and I will always regret that my grandfather’s final hours and ultimately his death were so lacking in comfort and beauty. He meant so much to us. I so wish we had been able to keep him at home.
I’m far from alone in my aversion to nursing homes. Nearly 90 percent of Americans feel institutions are not the appropriate place for elders to spend their final moments, months, or years. The great majority of us want to live and age at home. The question is how, exactly, we can manage that.
America is about to experience an “elder boom,” a direct result of the baby boom of 1946 to 1964. We have more senior citizens in America today than we’ve had at any time in our history. Every eight seconds an American turns sixtyâ€‘five; that’s more than ten thousand people per day, almost 4 million per year. A century ago, just about 3 percent of the population was sixtyâ€‘five or older. Today more than 13 percent of Americans are over sixtyâ€‘five, and by 2030, the number will be 20 percent. The 5 million Americans older than eightyâ€‘five, our country’s fastestâ€‘growing demographic, will number 11.5 million by 2035. Because of advances in health care and technology, people are living longer than ever, often into their nineties or breaking one hundred.
Let’s remember: people getting older is not a crisis; it’s a blessing. We’re living longer; the question is how we should live. As a country, we have to figure out how to embrace this demographic shift with grace. Just as the baby boom brought with it incredible power and opportunity, so does the coming elder boom.
One thing we know is that the longer people live, the more likely they are to need assistance. Seventy percent of people aged sixtyâ€‘five or older need some form of support. By 2050, the total number of individuals needing longâ€‘term care and personal assistance is projected to grow from 12 million to 27 million. It is often assumed that women will absorb these tasks, as they have for much of our country’s history, but that is not going to happen in twentyâ€‘firstâ€‘century America. Most households today are dual income, which means there is no one at home fullâ€‘time; at the same time, more and more American households have both children and aging parents who need support and care every day. The need for professional caregivers is skyrocketing.
Aging at home necessitates home care workers. Yet the 3 million people currently in the home care workforce cannot meet even the current need, let alone the demand for care that will accompany the elder boom. We will need at least 1.8 million additional home care workers in the next decade. As a result, caregiving, specifically home care, is the fastest growing of all occupations in the nation. By 2018, demand for home care workers will increase by more than 90 percent. Many of the existing eldercare workers are lowâ€‘income African American and immigrant women who are faced with innumerable challenges, among them low wages, long hours, and inadequate training. Of the oneâ€‘quarter of today’s home care workers who were born outside the United States, about half are undocumented, which means that fear of deportation puts these workers under further stress. These conditions have led to high turnover in the industry, which hurts everyone: elders, their families, and the workers themselves.
Many of these issues also have profound implications for people of all ages with disabilities. With the birth of the disability rights movement in the 1960s and 1970s, independent living replaced institutionalization as the clear preference of people with disabilities. Alongside assistive technologies, it is home care workers, predominantly known in the community of people with disabilities as “personal attendants,” who enable many people with disabilities to manage their personal care, maintain a home, have a job, go to school, and participate in other aspects of independent living. According to the U.S. Census, in 2000, an estimated 13 million Americans with disabilities were living independently in their communities. The concerns and stories of people with disabilities are and should be the subject of many books, and while these topics are deeply connected, this book’s focus is the aging of America—the challenge and opportunity of this demographic moment.
Many Americans currently struggle to afford the care they need. On average, a home health aide hired through an agency costs approximately $21 per hour, the cost of an assisted living facility averages $3,300 per month, and a semiprivate room in a nursing home costs $6,200 per month. Yet the average Social Security check amounts to just $1,230 per month, and Medicare provides little if any support for homeâ€‘based care. How can elders or people with disabilities remain at home and live independently without sufficient support or funding? Our country has not adequately accounted for the caregiving we need. Yet home care is the future.