In 1994, when the movie Philadelphia hit cinemas, it was the first big-budget Hollywood film about HIV/AIDS. Now, over two decades later, the film is often cited as a trailblazer in the fight against that horrible – but now largely manageable – disease. But this take on Philadelphia’s role in the history of HIV/AIDS isn’t quite accurate.
Before Philadelphia wooed moviegoers and won two Oscars, the human costs of HIV/AIDS were explored on both screen and stage. As one example, there’s the 1985 “As Is” by William Hoffmann, which ran for nearly 300 performances on Broadway and was nominated for a Tony Award. In Roger Ebert’s 1994 review of Philadelphia, Ebert claimed as much, noting that Philadelphia “breaks no new dramatic ground,” and suggesting that while Hollywood may have upped the ante, other brave and pioneering artists came first.
This is exactly what we are seeing now with caregiving and Alzheimer’s disease. Sure, Still Alice brought the horrors of Alzheimer’s to popcorn-feasting audiences, but the movie glided over the brutal day-in, day-out demands of family caregiving. It failed to show how overwhelming and all-consuming it is to be a caregiver. This is not to criticize Still Alice, but to emphasize that elder caregiving remains in the dark.
Enter “Mourning the Living,” a full-length play by Mickele Hogan that premiered this August in New York. The story revolves around Kay, a woman whose husband has early onset Alzheimer’s, as she struggles to provide him the care he needs while also maintaining a life for herself. As the story unfolds, a dramatic irony arises: we, the audience, can sense that it won’t end well. We anticipate that the struggles of Alzheimer’s caregiving will overcome the family, as well as friends and even the neighborly help.
We sense, almost inevitably, that Kay will find it impossible to balance doing what’s right for both her husband and herself. Indeed, “Mourning the Living” captures perfectly the tensions in making one of the toughest choices in a caregiver’s life: how to choose between one’s basic human needs and the higher, moral pull of caring for a loved one.
The story ends on an eerie, prophetic note: Kay and her husband stand alone, in a dark and cold room, with Kay noting, with loss and devastation across her face, “It’s winter.”
Will “Mourning the Living” be the next Philadelphia? It’s doubtful that it will be cited as a turning point in either the fight against Alzheimer’s or the work for elder caregiving support and better caregiving methods.
But it should be. Bravely and fiercely, “Mourning the Living” gives voice to previously unspoken horrors that are sweeping America and much of the world. The caregiving burden is the underside, the black cloud, the unspoken nightmare of longevity. With our miraculously long lives brought about through the innovation miracles of sanitation, modern medicine and dispersion of detection and treatment across all society, are often taken for granted. Having pretty much conquered the diseases of earlier centuries – an infection was once a death sentence – we are now too often afflicted with diseases like Alzheimer’s that render elder caregiving one of the growth industries of our time. We cannot afford – socially or economically – to ignore caregiving any longer, and let’s hope that this profoundly compassionate, articulate, and beautifully acted production shines the light on the elder caregiving that 21 century life is demanding.
Nor do we miss that longevity transforms Alzheimer’s (and other illnesses of aging) from a “rare disease” to the public health crisis of our time. The tens of millions suffering around the planet multiplied by the numbers of family, neighbors and community caregivers is what makes Ms. Hogan’s play so poignant and important. She has hit a nerve on many levels of 21 century life. Alzheimer’s now costs over 1% of global GDP, far exceeding the $604 billion measured five years ago; and, multiplied exponentially by the costs of the elder caregiving Mickele Hogan so well describes in “Mourning the Living.”
But perhaps what makes “Mourning the Living” even more remarkable is the playwright; herself a 23-year-old from Omaha, Nebraska, who grew up in a family that founded Home Instead Senior Care, the world’s largest provider of non-medical in-home caregiving. For her summer job, Mickele worked as a caregiver for seniors, experiencing first-hand the tensions, troubles, and demands of the position. “Mourning the Living” surely draws from these experiences and insights. And it is clear from the brilliance and remarkably smooth dynamic of the dialogue she created that it comes not just from an intelligent and well organized mind, but from a heart and soul that feels it, too.
As we write the history of the 21 century, one of the defining themes will be the “miracle of longevity.” By mid-century, there will be two billion of us over 60, and life spans will, by routine, stretch into the 90s, 100s, and beyond. But Ms. Hogan teaches that the achievement has its darker side. Quite rightly, she exposes the underbelly of longevity and perhaps not unlike earlier, less celebrated treatments of HIV-AIDs, points the way to a whole new need across society to understand, expand and also honor elder caregiving.
You might have missed “Mourning The Living,” as it showed at the off-Broadway Hudson Guild Theater in the trenches of New York City’s Chelsea District. But my prediction is you will have another chance as the worlds of theater, social commentary, and 21-century life collide. Hooray for Mickele Hogan who made us think and feel by crafting a truly wonderful story informed by excellent writing, deep compassion and the experience of elder caregiving that is obviously in her DNA.