No Saints around Here: A Caregiver's Days
Susan Allen Toth
Univ Of Minnesota Press, 2014
256 pp., 16.95
Lisa Ohlen Harris
"For Better or for Worse"
My mother-in-law shared a home with my family for seven years, and as her health declined, I became her primary caregiver. Since Jeanne's death in 2008, I've read dozens of books on caregiving and end-of-life issues. When I look back at my years of caregiving, I don't feel the same sense of darkness and loss I once felt. Sometimes I even feel victorious in a way, because I made it through. I cared for Jeanne to the end. I did the right thing. And now I am free—for the time being. I know another season of caregiving is ahead of me—for my own parents, for my husband, for a close friend or one of my children when some unforeseen illness or disability interrupts our plans. When we pledge, "for better or for worse," we envision walking off into the sunset hand-in-hand. What bride sees future dementia in the shining eyes of her groom? We live in a broken, fallen world. We will all die, and many of us will die slowly. Most of us live as if it won't happen to us, to our loved ones, but it will. And when it does, there's no way out but through.
In No Saints Around Here: A Caregiver's Days, Susan Allen Toth writes her way through the last 18 months of her husband's decline due to Parkinson's and dementia. "I never wanted to look very far down our road," she writes:
I knew where it would end, but not the twists, dizzying curves, and detours it would take. Instead of trying to peer through an opaque and terrifying mist, I mostly kept my eyes on my feet: one step forward, another step. Step, step, pause. Step, step, keep going.
James was diagnosed with Parkinson's after a small stroke (he was 71). Toth turned to literature, reading memoir after memoir to learn what life would be like as the disease eventually progressed into disability and dementia. "But I was also looking for something more. I wanted a report from the front lines. I wanted details." The memoirs Toth read were all written in retrospect:
No one gave me an unblinkered, running account as caregiving gradually grew from a mild nuisance to a constant worry to an all-consuming way of life. The little things, not just the big stuff: that is what I wanted to hear. No one told me how she (or he) felt when she had to brush and floss her husband's teeth.
So Toth began to record "the little things." She wrote to understand what was happening to her and to James, but she also wrote to the future—to those of us who will one day be caregivers in need of fellowship with someone who knows what it's really like.
Toth's memoir consists of dated essays written in the present tense. She told herself if she ever created a book-length work out of this journal, she would not change a thing—she wanted to keep the sense of immediacy in her notes from the trenches. She confesses that in the end she did cut some material that seemed extraneous, but she does not reveal whether she otherwise revised the manuscript from its first draft. The book certainly retains the character of an unedited journal, which is both a strength and a weakness.
Each time I sat down and opened the book, I felt I was reading a heartfelt letter from a friend, and as the chapters accrued, I came to know Toth and her husband as well as I know many friends. Toth's writing is well tuned and enjoyable, and she takes us deep inside each moment. Her day begins in the kitchen with a mug of Earl Grey tea with milk and the baby monitor on the counter turned up so she can hear when James begins to wake:
Now it is time to set out the morning pills, his and mine. Cut his big ones in half. Place the Kleenex, sheets of paper towel, and wastebasket by his chair. Pour juice and water. Start his coffee. Put away last night's dishes if I had been too tired to do that. Oops, fresh water for the cats. We're almost out of orange juice. Make a note. Oops again, I need to move James's bottle of laxative where I'll see it, or I might forget the morning dose. Uh oh, James is now moving again, antsy, wanting to start his day. Upstairs. "Okay, get your balance. Careful, careful. Now head to the stairs. One foot at a time. Excellent, excellent. Another foot. Yes, excellent. Now straight ahead to the chair."
In these moments I see my future self, my future decline, my husband's. No saint, Toth says of herself, and I believe her, but I also hope I can do as well when it's my turn again to be a caregiver.
This book doesn't just pull me to the future. I think, too, of those who are caregiving now, who are living this season behind closed doors while I happily go on teaching and writing and shopping for my family's groceries and running my kids to drama rehearsals and activities. I remember how stressed and lonely I was when my mother-in-law was in decline. I remember wishing someone else, anyone, could be the caregiver instead of me. I loved my mother-in-law, but I wanted out.
After friends urge Toth again and again to "have a life" outside the caregiving, she tours care facilities. She knows how James dreads these places, but she also knows that as his dementia grows worse, she may not be equipped to continue caring for him. The social centers and exercise rooms of the nursing homes are ghostly quiet. Toth leaves the nursing homes with a sort of muddled clarity:
How would I feel when I saw James strapped into a wheelchair, perhaps sedated, because no one could be with him every minute to make sure he didn't try to stand up and then fall down? Who would take the time to wash his scalp carefully, gently, every day with a medicated shampoo to alleviate an itchy flakiness that Parkinson's has added to his symptoms?
Toth sees clearly what many of us don't. There is no easy way out.
Thanks to a rotation of paid caregivers, Toth does get out for an hour or two most days to write, to go for a bike ride, to hit a thrift store for a bright T-shirt or new pair of jeans. And she is grateful for her small freedoms.
Much as I admire Toth's caregiving and her writing, I found myself consistently annoyed at certain aspects of the book. In several places, Toth (or her editor) has inserted parenthetical cross-references. In a friendship formed over many cups of coffee, stories are repeated—often with a different insight or detail of memory. When an author refers back to an event earlier in the narrative, the reader feels connection, not irritation. Ah, yes, I remember when you managed to get James down two flights of stairs in his wheelchair, I might think. But Toth has to plop the chapter reference in parentheses (See "The Last Christmas"), pulling me out of her literary spell and reminding me this is, ostensibly, a mostly unedited chronicle. The text is set in Clifford Pro, a font with heavy vertical lines that doesn't reflect the grace of the writing and pathos of the content. And yet, these are the flaws of a friend. Over many cups of coffee, I have come to love this little book.
Why do I wish this book were more polished? Toth is the author of half a dozen lovely, well-received memoirs. The woman has chops. No Saints Around Here is more winsome and eloquent than many of the caregiving books I've read over the past six years. Susan Allen Toth doesn't need to make high art out of what is already complete and finished: the fulfillment of her marriage vows:
The days, weeks, and months passed, and somehow we all managed. To my infinite relief, James never had to go into the nursing home he dreaded. One morning soon after his death, I drove to a nearby coffee shop to meet my widowed and former caregiver friend Barb. As we startled the coffee drinkers around us with our vigorous, pumping high fives, we both had tears in our eyes. We had done it.
Lisa Ohlen Harris is the author of The Fifth Season: A Daughter-in-Law's Memoir of Caregiving, published last year by Texas Tech University Press.
Copyright © 2014 by the author or Christianity Today/Books & Culture magazine.
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