At a time of intense division and polarization in our country, care is one of the issues that affects us all
Rachel McCullough, JFREJ Director of Organizing and Campaign Director for the New York Caring Majority writes in the New York Times about Movement of the Caring Majority and a new film that spotlights those struggling to navigate incomprehensible system we’ll all need to rely on at some point. Join JFREJ for a screening of the film, Care, on Tuesday, Sept. 5th.
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.