I am sitting in a hospital in Boston. It is a world-class hospital. The surgeons, the nurses, even the many, many consulting doctors, residents, and clinical fellows that come around with interns in tow—all of them clearly have been trained to look patients and their families in the eye, shake hands and introduce themselves to everyone in the room, speak in lay terms, use metaphors, wait for questions. It’s reassuringly top-level care, and in almost all ways, my elderly, frail father is doing well, even given the complexity of his health issues and the interventions that have been made to his body over the past two months.
Everything around the hospital is designed to soothe. Today a woman is playing a harp in the lobby. Each bit of space between building and sidewalk is filled with green plantings, blooming flowers and shrubs, all around this complex in the very middle of this wounded but vibrant city. The place is clean and well-stocked. We are not worried—as we have made our way over these months through the maze of information, consultations, vernacular and scientific terminology, medications and procedures, clinical trial and consent forms—about who will pay for all this: for the seemingly endless supply of antiseptic hand cleaner posted every five feet, the unbelievable waste of plastic spoons, straws, gloves, cups, wipes, gowns, masks. We are supported through all this by systems and privileges that are beyond imagining for most humans on this planet.
And yet, it boggles the mind to consider the level of intellectual acuity, cognitive processing, and institutional savvy that are required to make one’s way intelligently and safely through it all. How does anyone without an advanced degree manage it? How does anyone with the responsibilities of a full-time job elsewhere not quickly reach a point where the head explodes and the body quits? [End Page v]
Each time over the past months that I’ve found myself having to make an excuse to someone for why I’ve missed yet another deadline, or why I cannot quite come through with what’s required, I am met with immediate empathy and a response that is almost verbatim the same: You have my sympathy. We had to take care of my spouse’s parents/mother/father last year. It’s not easy. Take care of yourself.
There are so many of us who are now in this place: aging parents to shepherd through the process of aging further. Tracking medical procedures. Moving homes. Downsizing to a life the size of a single bedroom. There are so many of us who share this journey with a loved one or two toward end of life, though we don’t want to call it that yet. We were told, just wait till you get to be this age. Now we are required to pave that way.
More than a few of my friends on similar journeys—having successfully navigated the intricacies of getting Medicare to answer questions about coverage, of figuring out the differences between assisted living, skilled nursing, long-term care facilities, and nursing homes, of sorting through file drawers and shoe boxes of papers to pay bills and settle estates—have said, “I should write a book about this. I wish I’d had one.”
I wish I had one. But I also know that any how-to book I’ve ever picked up has missed the particulars of my situation, whatever it is I’m trying to help myself to do, and in the end is not of much help. It’s not a how-to book we want or need; it’s companionship along the way. Each time I’ve made my excuses and received those same reassuring words—I’ve been there, take care—I’ve felt buoyed. Held. Sheltered a bit. I’ve been there, we say to one another, and it’s hard.
I’ve been pondering this because of an odd-seeming contradiction about reading the submissions to this journal: there are themes that repeat across the hundreds and hundreds we read each year. Themes about which we...