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Delving Into a Nursing Home—and Finding Compassion and Humor

In his new novel, Todd Johnson tackles life in a nursing home and the final stages of aging.

The popular old hymn “The Sweet By and By” offers a comfortingly sociable take on eternity, promising that when the time comes, “we shall meet on that beautiful shore.” In his new novel with the old hymn’s title, former musician and Broadway producer Todd Johnson doesn’t try to say what that ultimate by and by may hold—though he does hint at what the early days there might be like. Instead, he tackles what could be called the interim by and by, the thing so many of us fear—life in a nursing home and the final stages of aging. And he manages to take some of the sting out of what can be a painful experience. As his novel unfolds, many of the preconceptions that fuel our fears—losing our independence, our old acquaintances, our mobility, even our minds—begin to shift, and the final years start to feel, in some respects, like their own “beautiful shore.”

Raised in the South, Johnson was close to his four grandparents and spent much time with them, especially his grandmothers when they entered nursing homes in North Carolina. He sets his novel in a small town there and gives the characters inhabiting the town’s fictional Ridgecrest nursing home full, rich voice. We begin to experience the nursing home through their eyes. The usual suspects show up—the unsavory staff members, the impatient and uninvolved family members, the bouts of ill health. But something hopeful emerges as well. Despite their consignment to the dread institution known as the nursing home, the humans in Johnson’s story do what humans do at their best: They connect and create a culture of caring.

Numbers speak volumes. An estimated 1.5 million residents inhabit America’s 16,000 nursing homes and as many as 5.3 million people in the United States are living with Alzheimer’s. A recent poll found another 100 million people—family members, friends—are affected in some way by the disease. But Johnson’s novel is a welcome look beyond statistics to other, less tangible aspects of aging: what friendship and connectedness across generations can do for the quality of life—both for the young and the old. (Read an excerpt from The Sweet By and By).

Q. Do you think we need to change the way we feel about aging?

A. We need to talk about aging, open up a stream of dialogue around our fears of it. We almost never discuss it. We talk about retirements, what to do with free time, our positive dreams and plans. But we avoid talking about that last stage, when we might be infirm. I love to think that the women in my novel and their unlikely connections foster a sense of hope about growing older and an understanding that life can be just as meaningful at the end as it is in the middle or early years. I confess that when I started writing the book, I was afraid it might be too depressing a journey to continue. But then the character of Margaret began to emerge, and she was so feisty and engaged with life in her own way that I kept going. Now, having written the book, I actually feel better about what the path ahead might hold for me—and for anyone.

Q. Why this story?

A. I have a strong distaste for the marginalization of the elderly. I grew up with all four grandparents living close by, and I actually thought that was everyone’s experience. Only later in life did I realize most people don’t have all—or any—of their grandparents around them as they grow up.

Q. How did yours affect you?

A. Mine absolutely informed my life—their personalities, their stories, their histories. Who I am now is so much a result of that. That connection to them drove me to find a story that would bring them back on some level. After all, what will we lose if we stop incorporating the stories and the knowledge of the older generation into our own present and future?

Q. Does the friendship between Margaret and Bernice literally keep them alive?

A. One of the haunting things about moving into a nursing home is the sense of loss—loss of the familiar environment of your own home, of friends outside of the institution, maybe of being able to walk or even control your own mind. We come to points in our lives where we might give up. Then there’s that particular friend or even acquaintance that revs our engine, just when we need it. Despite her dementia, Bernice is the gas in Margaret’s engine. Margaret is frail of body but strong of mind, Bernice is the opposite. They dovetail wonderfully, and they understand each other on a deep level. I believe our associations are life-giving. How we choose, for as long as we can, to reach out and touch and be touched by someone else defines living. One either embraces it or retreats from it. Those two women don’t retreat.

Q. You use humor to soften the harsh edges of aging and dementia. Do you do that in your personal life?

A. Humor and storytelling were ingrained in me as I was growing up. If you could tell a good, funny story, you had a place at the table. Then, as my grandmothers aged and I spent time with them in nursing homes, I realized I could see some moments as either tragic or comic, and humor was the better companion for the journey. The journals I kept of those visits formed the backbone of my novel.

Q. Tell me one of the stories.

A. I remember one lovely sunny afternoon with my maternal grandmother after she began slipping into Alzheimer’s. That day, though, she had been very lucid—until I got up to leave. As I was walking toward the door, she slammed her hand down and said, “If you don’t quit workin’ that mule so hard, you’re gonna kill it.” It was the kind of non sequitur the character Bernice in the book might say. Yet the thing about Bernice is that she’s in a state of bliss, if not contentment. In her own way, she’s present. That’s how I see my grandmother’s mule comment. Was it factual? Absolutely not. Was it intimate, present? Absolutely.

Q. Many older people spend days lost in memories of the past. Do you think the brain, or soul, or whatever, needs to reexamine our experiences at the end of our lives?

A. Short-term memory loss is one of the issues of aging, but often long-term memory stays vital. Just because the elderly can’t remember what they had for breakfast—or if they had breakfast—they may be reliving big stuff. We all reap what we sow. Our angels and our demons are always with us. Do we relive those, and are we haunted by some of our past? I think so. When the distractions of life are no longer pressing, we don’t have to relegate our angels and demons to the recesses. What older people have is time, so everything that has been part of a life is going to rise up. For me it’s a spiritual issue more than a physiological or psychological issue.

Q. You have a degree from Yale Divinity School, and your great-grandfather was a Baptist preacher. How did your spiritual beliefs influence the book?

A. I grew up in the Southern Baptist Church, so I have that background. Then Yale Divinity taught me a very different way of thinking about all questions of faith—and all faiths. I’ve come to believe that faith is a continuum, a process, how we’re informed every step of the way. In the book, it plays out through Lorraine. She is my theologian. She’s on a spiritual journey, actively engaged in a dialogue with her faith and with God, all the time.

Q. We’ve all read of abuse in nursing homes, but the character of Lorraine, a nurse, is enormously consoling. What fuels her?

A. Being a caregiver. From her own hard life, she understands that caregiving is the deepest expression of compassion. When we choose compassion, we tap into our bigger selves, our lives expand, our worlds expand. And for Lorraine, compassion is a practiced art. Part of that art is her understanding that to draw attention to what is humiliating is wrong. When you’re a caregiver to the elderly, that understanding is critical.

Q. The women in your book aren’t afraid to bend the rules, which is one of the things that make their characters compelling. What are they getting out of that rule-breaking?

A. We all break rules in our own small ways. It gives us a sense of independence and a feeling that we can assert control over what immediately affects us. With people in a nursing home, who have so little independence left, it’s a way to prove that you can still make decisions. That’s why Bernice and Margaret break rules, but Lorraine breaks them because of her acute awareness of what the moment calls for. She crosses the boundaries of what her professional role would allow in small ways—like giving Margaret the “Co-Colas” she loves but isn’t supposed to have. Those small freedoms, small dignities are sometimes the most important.

Q. How do you think older people perceive time in general?

A. Time is a gift of aging. Time is also a big part of this book. I wanted it to be about the fluidity of time, what makes us aware of the passage of time. Holidays mark time in a nursing home, and some small event—meal, visitors coming and going. How do we think about time? How do we want to spend time once we have it? I don’t know that most people in their 30s and 40s think about that.

Q. What exactly does the title “The Sweet By and By” refer to?

A. The hymn lyrics have been interpreted as an encouragement for us to turn a blind eye on present suffering. But for these women, life is now—not in the sweet by and by—for as long as they have each other.

Despite being a lifelong Virginian with a deep appreciation for the nuances of the South, K.M. Kostyal has turned to an entirely new perspective in her most recent book, Abraham Lincoln’s Extraordinary Era.