What We’re Reading: No Saints Around Here: A Caregiver’s Days

No Saints Around Here: A Caregiver’s Days, by Susan Allen Toth (University Of Minnesota Press, April 2014)

Susan Allen Toth’s new book of essays, No Saints Around Here: A Caregiver’s Days, is a beautiful chronicle of the life of a primary caregiver. Toth’s beloved husband, James, had Parkinson’s disease. Although he was ill for over a decade, these essays were written in the last 18 months of James’s life. The stories she tells in this book are brutally honest, funny, and affecting, with the end result being a very worthwhile read about unconditional love, sacrifice, time, and loss.

Her readers get the sense that Toth left these essays very much in their original state, which, to her credit, was probably a difficult thing to do. The most surprising aspect of this book is how extremely candidly she writes. It likely would have been easy (and tempting) for an author of a book like this to go back and edit with the sentimental hand that is hindsight. Toth, on the other hand, left these essays as they were when she wrote them, in a gritty testimony to the grueling years she put in as a caregiver. The result is a book that holds nothing back. Watching a loved one slowly succumb to a disease like Parkinson’s is not an easy feat — but it’s even more difficult to be at ground zero, day in and day out, for years.

Because of her constant proximity to James and the work she put into his care, an overarching theme of the book is the dichotomy between the deep love Toth felt for her husband and the frustration she felt at being his primary caregiver. In many of the essays, she has written unabashedly about frustration, anger, guilt, and loneliness. James’s progressive disease made caring for him increasingly demanding. In the first essay of the book, she writes,

He is awake, and I have to get up. He needs attention, a move off the sofa, something to do. I heave a THERE-GOES-MY-NAP sigh. Oh, yes, James hears those sighs. Mostly they pass over him, like a short sharp breeze, and he does not seem to notice. Or he may look up, briefly puzzled, and look at me like he doesn’t understand why I’m sighing. And he probably doesn’t. But sometimes, when he sees my face, my eyes closing for a second (OH NO, HOW COULD THIS BE HAPPENING?) and my voice taking on that awful forbearing tone (CAN YOU SEE I’M GRITTING MY TEETH RIGHT NOW?), he’ll say, with a brief moment of recognition, “I’m sorry.” Then, of course, I feel terrible.

For anyone who hasn’t considered the amount of effort and energy it takes be a caregiver (like me), this book is an eye-opener. Toth spares no details as she writes about flossing James’s teeth (“He stands fairly still for this, but I have to dodge the flying specks. I’m not always fast enough”), becoming an expert on unmentionables like commodes and Gentleman’s Pads (“‘Extra-absorbent,’ ‘Maximum,’ ‘Superior Absorbency,’ ‘Overnight,’ ‘Super-plus.’ Nothing, it seemed, was merely ‘Standard’ or ‘Regular.’ All were superlative. I bought a variety for testing.”), the hours spent counting pills, cooking meals, feeding her husband, and caring for the household alone. Her days of caregiving were exhausting, often thankless, and seemingly unending.

The book certainly isn’t all dark. Many of Toth’s essays about the perfunctory and unsavory aspects of care giving are laced with humor. But her occasional humor is balanced with emotional and deeply affecting pieces about the toll this disease takes not only on the patient, but on their loved ones. Because while she was learning to outfit James in Gentleman’s Pads and having his prescription bottles knocked over by her cats, she was also acutely aware that her husband was dying. Take, for example, the essay “The Last Christmas,” where she writes about the realization that her husband was experiencing many things for the last time. The two of them shared a beloved cottage in northern Wisconsin, but as time goes on taking James there has become more difficult. One weekend she knew it was their last trip there as a couple. She writes,

As we walked carefully to the car after breakfast…James stopped. … He was pausing to look out once more at my rambling, messy, and extravagant garden and two striking, very small outbuildings, which were among his last architectural creations. …he said thoughtfully, “I like that roof peak. I think this summer I will take pictures of some details around here and make an album of them.” … I already knew James would never return to this place he loved so much. That beautiful spring morning we were standing only a few yards from a small half-covered deck…which James called the “Garden Overlook,” just big enough to hold two Adirondack chairs…I wanted very much to lead him gently through the narrow arch of the Overlook and lower him into one of the chairs. I could sit in the other. …One last time.

But I had been up all night. I was disintegrating. …So I helped James into the passenger seat…I steered almost blindly down our gravel drive. I thought if I looked back my heart would break.

Because Parkinson’s is a progressive and unpredictable disease, the theme of time and its passage is a focal point of the book. Toth never really knew just how much longer she had with her husband. Time, for a caregiver, takes on a “careful what you wish for” aspect. Of course, she wanted James alive for as long as possible, but on the other hand, as she grew more and weary of being a caregiver, the months or years she potentially had left would sometimes seem daunting. In the essay “Just a Minute,” about how often she feels that yells that phrase, she sums up her relationship with time when she writes,

I do hear myself. I’m talking about time. Time is such a shapeshifter for caregivers. On some days, I wonder, “Will this ever end?” On other days, especially those moments when I look at my much-loved husband, whose smile can still twist my heart, and notice how fragile he has become, I think of time differently. He is leaving me. We have so little time left together. Maybe only just a minute.

I have read some critiques of the book that argue that she was not as alone in her care giving as she implies. She and James did have, at least towards the end, nearly round-the-clock home health aides and occasional visiting family members to help with the care. Toth mentions several times that she is unendingly grateful for the help she was given. And in her defense, any critique of that nature ties into what I mentioned earlier about the essays seeming to have been largely unedited. Yes, she had help, but that it wasn’t enough to make her feel that the bulk of the burden was off of her shoulders. All of the help in the world couldn’t have changed the fact that she was watching her husband die, so it’s quite hard to fault her for feeling anything less than incredibly lonely and overwhelmed.

As James became more and more ill, she saw firsthand how close friends and even family seemed to visit less and less. She saw how it hurt her husband. She arranged lunches and visits with people who said they would come more often, but never did. Of course, it offended her and made her upset. In “Absent Friends,” she writes of an exchange with a formerly close friend who calls but never visits:

After his last phone inquiry, which I answered in a room where James couldn’t hear, I said, “Ray, if you ever want to have a real conversation with James in person, now is the time. Or it won’t happen. … I just want to say one other thing, Ray.” I heard my voice let fly. “If you don’t come to see James before he dies, don’t bother coming to the funeral. I’m not kidding. Just don’t bother.”

These are the scenes that she could have cut from the essays, but she opted to leave them in. The pain in this exchange is so real and palpable. Toth was trying desperately to keep her husband’s life as full and happy as possible, and as her reader, it becomes easy to imagine how she could have felt very much alone.

I came away from this book with a far greater understanding of what caregiving entails, but on a larger scale I also developed a greater respect for the bonds of unconditional love and the commitment that one makes to a spouse or partner. Caring for a person the way Toth cared for James is a monumental display of selflessness and love, and I hope that anyone who reads this book will feel grateful that she chose to not only write these difficult essays, but to share them.

Have you read any books or memoirs lately that you knew were deeply personal? Do you think you would be able to share a difficult time in your own life in such a public manner?