I first met Toni Siegel in 2012 at a diner on the Upper West Side of Manhattan. She was about to retire from her career as a school teacher when her husband Peter started experiencing some tremors and mobility challenges. Toni spoke to me over matzo ball soup, sharing her worst fears about Peter’s condition while she waited for a diagnosis. Though she already looked tired, she had only just begun a process that 40 million family caregivers around the country endure every day.
Nothing could have prepared Toni for the medical crisis that Peter would later experience. Peter’s condition quickly became severe, and he was eventually diagnosed with an especially vicious form of Parkinson’s disease. Within months, Peter’s condition required around-the-clock home care. Since then, Toni has navigated the enigmatic maze of the home care system, struggling to keep Peter at home through the process of hiring, training, and retaining home care workers. Her’s is now a common story and why she is the subject of a new film, Care. As is the case for countless families, the cost of that care for her husband is now threatening them with financial ruin.
Peter was 69 at the time, Toni 66. They are now barely older than my parents, and I am the same age as their daughter, Gillian. Like my parents, Peter and Toni had worked all of their lives, owned their home, and had saved up a substantial amount of money for retirement. But, their savings wouldn’t be nearly enough to pay out-of-pocket in the event that one of them would need around-the-clock home care for more than a few years. This is one of the reasons I now work with the New York Caring Majority to highlight the issue.
As difficult as their journey has been, it is the assistance of caregivers like Edith — also featured in the film — that has allowed Peter to stay with Toni at home. Ninety percent of people, in fact, prefer to live out their final years at home, which usually necessitates professional assistance. As we all live longer, and our nation becomes an increasingly aging and caregiving one, the fact is many of us will rely on the direct care workforce whether we’re caring for a parent or child or ourselves, that is, if we can afford it, and if we can find someone. Poverty wages, a lack of basic protections, and difficult working conditions have driven high turnover in an industry — mostly employing women of color — that is simultaneously experiencing huge demand and growth.
So what gives? Toni, Peter and Edith’s story is unfortunately no exception. And yet, most of us have internalized our fears about how we’ll care for our loved ones as our own private responsibility, and therefore our own personal failure if we can’t figure it out. Peeling back the layers of how we got here, though, this is a public crisis that most of us are grappling with. And it requires both a public solution and a reimagining of what’s possible.
The documentary Care helps do that with urgency and heart. Through shedding light on the lives of four families and home care workers on the front lines of the elder boom — including Toni, Peter and Edith — it calls viewers to reflect deeply on our societal values and priorities, while inspiring us to reimagine a world where we don’t leave anyone behind: where people can age in dignity and in community; where seniors and people with disabilities are valued just as much as anyone else, no matter their “productivity” in a capitalist economy; where we actually honor and respect our elders; and where we know and acknowledge that the people caring for them, mostly women, are doing some of the most critical and valuable work imaginable. The film also reveals the beginning of a movement to improve how we care — both for the growing number of older adults and for those who make their lives livable.
Through my work as a community organizer in this field, I’ve talked with hundreds of women like Toni on the front lines of the elder boom, struggling in isolation to navigate this often incomprehensible system and ensure basic dignity for themselves and their loved ones. And together they’ve joined with thousands of aging adults, people with disabilities, professional caregivers, and other family members touched by care who’ve felt a similar need to tell their stories and to change things for the better. Rolling down the streets all over New York City and elsewhere, you come to realize those of us who want to see more for our families, who want to be able to care for them and be there for them – we are everywhere. We are the majority. And if we join forces, we could be quite powerful together.
At a time of intense division and polarization in our country, care is one of the issues that affects us all — urban and rural, immigrant and native born, white folks and people of color, red state and blue. Providing quality care for an aging population will require all of us to reimagine how we value and compensate care workers and how we support families who need their services. It has been powerful seeing Toni, Peter, and Edith along with many other home care workers and seniors, on screen together. The film weaves their stories together to bring into focus a much bigger story about the care crisis facing our society, and shows how care is truly the connective tissue that can keep our diverse interests aligned. If we keep our feet firmly planted in that common ground, there’s no limit to the things we could accomplish in the years ahead.
The debut broadcast of CARE will be on September 5 at 8:00 p.m. (check local listings) on the WORLD Channel series America Reframed. You can learn more about the movement for the Caring Majority by signing up here or here.
With any luck, this broadcast will help us all to see that the care workforce is not a partisan issue. Each of us has a stake in making care affordable and creating dignified and sustainable jobs in this sector, because all of us as part of the Caring Majority.
Below, watch the trailer for CARE.
Rachel McCullough is the Director of Organizing at Jews for Racial & Economic Justice and the Campaign Director for the New York Caring Majority, a movement to build a more caring economy in New York State.