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No Saints around Here

No Saints around Here: A Caregiver’s Days

Susan Allen Toth
Copyright Date: 2014
Pages: 256
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  • Book Info
    No Saints around Here
    Book Description:

    When we promise "in sickness and in health," it may be a mercy that we don't know exactly what lies ahead. Forcing food on an increasingly recalcitrant spouse. Brushing his teeth. Watching someone you love more than ever slip away day by day. As her husband James's Parkinson's disease with eventual dementia began to progress, writer Susan Allen Toth decides she intensely wants to keep her husband at home-the home he designed and loved and lived in for a quarter century-until the end.

    No saint, as she often reminds the reader, Toth found solace in documenting her days as a caregiver. The result, written in brief, episodic bursts during the final eighteen months of James's life, has a rare and poignant immediacy. Wrenching, occasionally peevish, at times darkly funny, and always deeply felt, Toth's intimate, unsparing account reflects the realities of seeing a loved one out of life: the critical support of some friends and the disappearance of others; the elasticity of time, infinitely slow and yet in such short supply; the sheer physicality of James's decline and the author's own loneliness; the practical challenges-the right food, the right wheelchair, the right hospital bed-all intricately interlocking parts of the act of loving and caring for someone who in so many ways is fading away.

    "We all need someone to hear us," Toth says of the millions who devote their days to the care of a loved one. Her memoir is at once an eloquent expression of that need and an opening for others.No Saints around Hereis the beginning of a conversation in which so many of us may someday find our voices.

    eISBN: 978-1-4529-4129-5
    Subjects: History, Public Health, Sociology

Table of Contents

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  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-x)
    (pp. xi-xvi)
    (pp. 1-28)

    Sometime after midnight, I finally fell into an exhausted, drugged, but uneasy sleep. When Jeanne, my aide that night, tapped me lightly on the shoulder at 2:00 a.m., I was instantly awake. I knew before she spoke.

    “Susan,” she said gently, “he’s gone.” In one moment, I was out of bed and down the stairs. I don’t remember exactly what I felt in those seconds—mostly, I think, numb, as if I had been stunned by a hammer.

    In the lower bedroom, my husband James, gray, gaunt, and motionless, lay on his hospital bed. Even though Parkinson’s had begun its...

    (pp. 29-31)

    This morning, tired from a broken night’s sleep troubled by bad dreams, I was not in a good mood. So when I had to get up from the breakfast table three times to reheat James’s coffee, I soon became snappish. “I wish,” I said snidely, in a martyred tone that I learned (alas) from my mother, “you would try to drink your coffee before it gets cold so I wouldn’t have to jump up and down like a jack-in-the-box.”

    James did not respond. He never snaps back. I silently scolded myself as I walked to the microwave. Of course I...

    (pp. 32-34)

    At unexpected times, when I’m doing a task that I may not even find all that onerous, James will say, clearly and with feeling, “You are my hero!” I throw my arms around him. He recently told me, “I can’t thank you enough for what you do for me,” a whole and coherent sentence. Those words lifted my steps up and down many, many more stairs. Someday he won’t be able to say that, and I’ll just have to remember when he did.

    I don’t know how caregivers endure who, before their unrelenting caregiving began, did not have a happy...

    (pp. 35-37)

    Several signs alert me when I’m nearing the edge. Most are predictable—noticing an especially sharp tone when I talk to James, feeling my head throb at the end of the day, wanting so desperately in the morning to stay in bed that I have to invent a heartening reason to get up: “If I push off the covers and set my feet on the floor right now, I could have a quiet half-hour with the newspaper while James is still sleeping.”

    I can tell I’ve entered a danger zone when, like today, I open the mailbox and find four...

    (pp. 38-41)

    When James began sniffling ten days ago, my heart sank. Yes, I was worried about what a cold might mean for his damaged immune system, but I was also concerned about myself. When my daughter Jenny was a toddler in day care, I dreaded the afternoons when she would run to meet me, and I could see her nose was dripping.

    “That’s it,” I would tell myself morosely.

    Two days later, and my own nose would be running like a broken fire hydrant. Sometimes the virus waited three or four days. Sometimes I even became hopeful I’d escape it. But...

    (pp. 42-46)

    I hate filling pills. Toward the end of every third week—that’s how long I can juggle our variously dated prescriptions—I notice that it is time to refill our pillboxes. Time, again.

    I used to measure time quite differently. That was before Parkinson’s sank its grip so tenaciously into James. How many weeks until a long-anticipated vacation? Days until I concocted a new recipe for a little dinner party? Hours until we could contentedly close the door of our bedroom?

    Time has warped now. How can those three weeks have disappeared so quickly? Didn’t I do this a few...

    (pp. 47-48)

    A caregiver needs to make plans, but she should always make them in disappearing ink.

    Yesterday morning, remembering that my aide Martha would soon come for several hours, I thought, “Hey! After I’ve driven to the grocery store, the bank, and the mall to order new bifocals, I might still have time for a quick walk.” In deciding how I could apportion my time, I had, as usual, in George W. Bush’s famous coinage, “misunderestimated.”

    Off I hustled. But when I opened the garage and turned the key in my ignition, I noticed that my dashboard clock had mysteriously reset...

    (pp. 49-52)

    When I flop into my downstairs bed at night, I curl up next to my wombat.

    He is much smaller than an ordinary wombat—if wombats, those secretive, nocturnal Australian creatures, can ever be considered ordinary. There is much to be said for sleeping with this wombat. He is utterly tranquil. He doesn’t wake or turn uneasily when I get up at night. Although not seductively silky like a cat, his stiff, fuzzy fur is strokable. But sometimes, as I put my arms around him, I’m not always sure which end is which. His rotund pigginess makes it hard to...

    (pp. 53-56)

    Crammed onto our bedroom shelf is a carton of the wrong kind of incontinence products. I keep it because I think someday it might be the right kind. The bulky carton is wedged between an unread biography of Winston Churchill and a P. D. James murder mystery. I didn’t know where else to put it.

    Caregiving has blown through our house like a small tornado, scattering stuff everywhere. So many boxes of Kleenex litter the rooms—on the coffee table, dining table, sofa, end table—that it seems someone needs to have a tissue constantly within arm’s reach. (He does.)...

    (pp. 57-58)

    When someone asks me, “How are you doing, Susan?” I often reply, “Overloaded.” My questioner nods understandingly, but I’m not sure he or she knows exactly what I mean. This is what I mean:

    On my kitchen counter, I keep a tiny vial of Wite-Out, useful for erasing canceled plans and appointments from my wall calendar. Caregivers frequently cancel. I also keep a tiny vial of liquid bandage, since, as I’m scurrying around my kitchen, I frequently nick my finger instead of slicing a carrot. I try to slow down. I try to be careful. But things happen.

    This morning,...

    (pp. 59-64)

    Many of our friends believe I should be heading there today, driving James and his belongings to a nursing home. They seem to picture it as a pleasant, well-lit, homelike place on a hill, surrounded by landscaped grounds and tended by dedicated, sunny nurses, where James will be, eventually, fine. Just fine. Well looked after.

    “The adjustment might be difficult,” some will admit, “but he would get used to it. It might take some time. And of course you could visit all you want. You wouldn’t be deserting him. But you would be free at last. You deserve a life.”...

    (pp. 65-68)

    When I woke up on Friday, I felt unexpectedly energetic. Then at breakfast James said, haltingly, between slow spoonfuls of Corn Flakes, “I think I have a loose tooth.” I was bustling in the kitchen, cleaning up, feeding cats, and looking forward to aide Martha’s arrival. But a loose tooth was serious. My promising morning had just developed a nasty blip.

    For several years James has suffered from dry mouth. Parkinson’s and its medications can do that. Nothing we’ve tried seems to help. Dry mouth is not only uncomfortable, it is also an open invitation to bacteria and tooth decay....

    (pp. 69-71)

    I am trudging across an endless, frozen tundra. Everything is blurred into the same numbing color—ice, snow, sky. Pushing a heavy sled ahead of me, its strapped bundles teetering, I cannot see a horizon. I have no idea where I’m going. Time has vanished. I just keep moving.

    That was exactly how I felt two days ago, when a brief snowstorm pushed an unbearably long winter even further into April. I did not see myself as an explorer, however, headed toward a new discovery. I was not brave, not adventurous, just stupefied. I was trapped on a journey without...

    (pp. 72-75)

    “How is James?”

    I struggle with an answer to this simple question. If James had a cold or flu or even pneumonia, I would know what to say. “Much better, thank you,” or “His cold has turned quite nasty, but our doctor just put him on antibiotics, and he should be fine in a week or two.” If he were recovering from a broken bone, I might still be able to produce a truthfully optimistic response.

    But James has a chronic, progressive disease, and his Parkinson’s never gets better. It only gets worse. Some Parkinson’s patients do find symptomatic relief...

    (pp. 76-77)

    Yesterday I had a choice. At midmorning I unexpectedly found myself with an hour and a half more or less free. Martha could stay until lunchtime. An hour and a half!

    I did not even think of consulting my long-term, increasingly lengthy, very-soon-I-need-to-do-this list. Although this list can be a frustrating reminder, it is also an entirely irrational assurance that once everything is written down, those tasks are already halfway done.

    I wanted to leave the house to buy a pair of jeans. I wouldn’t have to go far; a consignment shop down the block has racks of inexpensive jeans...

    (pp. 78-80)

    Today I am thinking how hard it is to be a good Buddhist. I haven’t previously aspired to this—my aspirations these days are quite low, perhaps cooking a tender pot roast or riding my bicycle up a moderate hill without puffing—but I recently decided to try to follow Thich Nhat Hanh’s precepts to bring more peace into my life. In his bookPresent Moment, Wonderful Moment,he makes this transformation sound so simple. He divides the day into ordinary activities, such as waking up, getting out of bed, and walking. For each activity, he has created a four-line...

    (pp. 81-84)

    I am tired of lying. I’ve never had a problem giving deceptive answers to questions like, Is my new haircut flattering? Do you think I need to lose weight? or What did he really say about me? White lies are quick and easy.

    I wish I didn’t have to lie so much, and with such calculation, about caregiving. Last Saturday after breakfast, I repacked all the groceries, books, DVDs, and other essentials that were to have lasted for a long weekend at our cottage in the woods. Load after load, I trundled them back to the car in our wheelbarrow....

    (pp. 85-85)

    I consulted my dentist yesterday. Two of my teeth, one upper and one just below it, seemed damaged. They hurt some of the time. When I drank or ate something cold, the upper tooth hurt even more. What was the problem?

    I like my dentist, but I hate having any dental work. I even hate the sound of a polishing drill when I have my teeth cleaned. So I dreaded a diagnosis with words like “root canal,” “abscess,” or “infection.”

    My dentist tapped and poked. He blew cold air on the troubled spots (ouch!). He took an X-ray. He peered...

    (pp. 86-87)

    During bad times—these last few weeks, for example, when James’s dementia is noticeably worse and his hallucinatory nightmares ever more disruptive—I continue to be surprised by how a small gesture or unexpected comment can comfort me.

    A few days ago, I did snag an overnight stay alone at our retreat in the Wisconsin woods. On the way home, I stopped at the Smiling Pelican bakery.

    Sandra and David open this small-town, tiny, and wildly successful bakery only during the summer season. Sandra is a worldclass baker who trained abroad. David, an artist, tends the counter. He is a...

    (pp. 88-97)

    James and I are not used to being invisible.

    Before Parkinson’s bit so unshakably into James, and before I stopped writing in order to care for him, the two of us were certainly not celebrities, but we were not an unknown couple. Publicity about his architecture and my books appeared here and there.

    During those active years, we were frequently invited to dinners and parties. James in particular brought amiability and energy to any gathering, and he reveled in telling anecdotes. Because I have always been curious about people, I like to ask questions, and I can tell a few...

    (pp. 98-102)

    So how does it end? Does anyone really important die?” I ask my daughter, who has just recommended a movie. I have read a few reviews; the critics haven’t given much away.

    “Oh, Mom, you don’t want me to tell you!” Jenny wails. She shouldn’t have to wait for my answer. She’s had this conversation with me many times.

    “I just want to know if it ends happily,” I say firmly. These days I have no intention of going to a movie that will leave me depressed. I don’t even want to see a movie that is sad but uplifting....

    (pp. 103-110)

    Life goes on, except when it doesn’t. So despite James’s and my official launch into the last chapter, I continue with everyday details of caregiving.

    I try not to look ahead. Sometimes, however, I look back. I only began writing these entries in February, yet February now seems so long ago, frozen in a distant past. In February James slept fairly well most nights, he could feed himself without much help, and I could plan an overnight break without wondering whether I’d be able to leave. That was February. Now is harder.

    As I look back, I wonder what I’ve...

    (pp. 111-112)

    When I heard the voice, I was brushing James’s teeth. I was already cloaked in the murky fog that envelops me around 5:00 p.m. By that time, my caregiving help has left for the day. I was facing a nonstop haul toward James’s bedtime.

    As I was dabbing with Kleenex to keep toothpaste off the floor, I suddenly heard a sharp, clear voice. It seemed to come from the bathroom cupboard behind me. “THIS WILL NEVER END,” it said, in an authoritative tone. I kept brushing, but the voice didn’t stop. “IT WILL NEVER END. IT WILL GO ON FOREVER....

    (pp. 113-115)

    Because James and I are somewhere—no one knows exactly where—in the final chapter, I’d like to think that the words he hears from me most often now are “I love you.”

    Actually, what he hears most often isjust a minute!I say that phrase, calmly or irritably, reassuringly or dramatically, even sometimes with a screech, so many times a day that I should have a wristband recorder that would shout it out cheerfully when I press a button. I have many variations of tone forjust a minute!Cheerful isn’t always one of them.

    James deserves a...

    (pp. 116-122)

    I am sitting in the airport. I am shaking a little, not because my flight has been delayed or canceled but because I am here at all. Until the moment I walked through the arch at Security, I wasn’t sure I’d get this far.

    I have cashed in my frequent-flyer miles to finance a nine-day trip to London. My doctor and friends had been urging me to do it, to take a break that would enable me to continue James’s and my other journey, the staggering march led by Parkinson’s, to the end.

    I am in the airport. Two weeks...

  29. GRAVY
    (pp. 123-127)

    “Gravy,” James said. “I like gravy.” Then he paused.

    Dr. Sutton waited a minute or two. Then she asked encouragingly, “Well, I like gravy too. But gravy on what?”

    James looked at her pleasantly. “Gravy. I just like gravy.”

    I tried to keep a straight face. A few months ago, at one of James’s regular checkups, she had noted his continuing weight loss. Two or three pounds were disappearing every few months. Before Parkinson’s, James weighed 168 pounds (and at six feet and very fit, that seemed about right.) Now he was at 136. We clearly needed to talk about...

    (pp. 128-131)

    On this late autumn afternoon, a cold wind was whipping leaves from the trees. Under a low gray sky, a faint drizzle dripped steadily on the front steps. Our back door had just closed behind James and aide Martha, who was taking him to the dentist for a routine cleaning. I would have two hours alone in the house.

    Two hours. In my house. All by myself. The last time this happened was another dental appointment—four months earlier. Because of James’s increasing fatigue, fits of muscle weakness, and uncertain mental focus, he can no longer go out for lunch...

    (pp. 132-135)

    I always knew the door was there. Years ago, watching a friend slowly wither and die from ovarian cancer, I saw how peaceful she felt in her own bedroom, supported by hospice, as family, friends, and caregivers quietly came and went, talking to her, holding her hand, tending her. As Parkinson’s gripped James ever more tightly, I hoped I too could care for him at home until the end, and I knew a hospice program might make that possible.

    Although James and I are not yet at the absolute end—I also know as I write this that lightning could...

    (pp. 136-137)

    Time, again. I have been writing this memoir, sporadically and unevenly, for almost a year. I do not go back and reread my entries, and who knows? Maybe I will never want to relive these past ten months. I know I have often written about time, its brevity, its compression, and its disappearance. Time blurs. Days of the week pass now without my always quite knowing which day it is—Wednesday? Thursday? I look at my big wall calendar, scribbled with notations and appointments, to steady myself. I want to keep my feet firmly planted on today.

    Since James and...

    (pp. 138-139)

    I feel as if I am about to fall off my balance beam. I picture every caregiver on one, usually performing with an outward calm, like a confident acrobat, but concealing an inner terror: “What in the world will I do now?” For many of us this must require both courage and faith, because I am often dizzy and close to gasping as I edge my way forward. The balance beam hangs in an enveloping haze.

    When James entered hospice, I imagined that the haze was lifting—revealing, I was sure, grief and desolation, but still a certain clarity about...

    (pp. 140-142)

    I used to know stuff. Lots of stuff.

    When I graduated from high school in 1957, I had memorized almost all the lyrics to every song Frank Sinatra ever recorded. Sinatra has stayed with me. As my long-distance daughter and I were recently doubling up on a SundayTimescrossword over the phone, I spotted a Sinatra clue. I was incredulous that she had never heard one of his classics. I then warbled the whole bleak song to her in my slightly off-key, one-octave voice: “Make it one for my baby and one more for the road . . ....

    (pp. 143-148)

    I need to find a new obsession.

    I first discovered how useful an obsession could be many years ago. James (who could still go to movies then) and I held hands, as we always did at movies, while we watchedWalk the Line, a romanticized but emotionally powerful biography of the young Johnny Cash. I was fascinated.

    How had I almost forgotten that deep, hypnotic voice, with its accompanying heavy beat, BOOM CHICKA BOOM, BOOM CHICKA BOOM? When I was a teenager, I’d avidly listened to his great hits, not just the movie’s title song but others like “Folsom Prison...

    (pp. 149-155)

    Of course I don’t really know if this was the last Christmas. Despite James’s entry into hospice in early October, he is still walking (a little), eating (some), and showing awareness (spotty and subdued) of his increasingly small world. I think sometimes of Dylan Thomas’s much-anthologized poem to his dying father: “Do Not Go Gentle into That Good Night.” Thomas urges, “Rage, rage against the dying of the light.” James is not raging. I am not even sure that he knows the light is slowly fading; he has never spoken of dying. I can’t tell how much he is able...

    (pp. 156-158)

    Yesterday was our silver anniversary. James and I have now been married for twenty-five years. We “kept company,” as my mother might have said, for three years before that. Twenty-eight years together. And still counting.

    Because we married (each for the second time) when I was forty-four and James was fifty-nine, I knew I could never look forward to a golden wedding anniversary. But by then, after eleven single years following my divorce, I had almost given up hope for a happy marriage. Twenty-five years together has been a miracle.

    Our anniversary was a silvery day, with a gray but...

    (pp. 159-163)

    Caregivers hear them all.

    We accumulate every single cliché and bromide, although I surmise very few of our well-wishers have ever been long-term caregivers. As I just wrote “bromide,” I couldn’t help thinking of Bromo-Seltzer, as if, like an antacid, all these little sayings were supposed to bubble up inside me and soothe a constant ache. So far I have resisted answering, “Of course, and I also know the ones about how every silver lining has a cloud, and everything looks darkest just before it goes totally black.”

    Yet I admit I am humbled these days when my skeptical assumptions...

    (pp. 164-169)

    This is a story about a car that didn’t blow up. But it is also a postscript about my net, the web of support all caregivers need. Yesterday I discovered an unexpected corner of my own net in a suburban high school parking lot.

    I am not a natural optimist. After my father died when I was seven, I learned how mortal disasters strike without warning. I worry a lot. At any sign of difficulty, I can easily think of all possible catastrophic possibilities. In my late twenties, when I consulted a counselor about my failing first marriage, he once...

    (pp. 170-175)

    I remember another tunnel.

    Almost fifty years ago, when I was a summer-school student in London, I discovered the beauty of ballet. Clutching a standing room ticket on the uppermost tier of the Royal Opera House in Covent Garden, I was enthralled by the dancers ofSwan Lakefloating far below. Although I could not see their faces, I could hear every note of Tchaikovsky’s haunting music.

    When I left that night, I was in a trance. I descended into the Underground and turned into a dimly lit tunnel that seemed deserted. I was alone, but I was not in...

    (pp. 176-176)

    Census Day has come and gone. On April 1, I could certify that two people—James and I—still lived together at one address. As our ship has drawn ever closer to the far shore, I think James has decided he is not yet ready to disembark. I imagine his taking a very deep breath, blowing into our sails, and turning our vessel aside, back into choppy waters. I have again pulled out my maps of survival so I can continue to chart our unpredictable course....

    (pp. 177-186)

    My friend Marnie was exasperated. Marnie, who lives in a comfortable Connecticut enclave, had just finished reading these essays and called with a sharp reaction. “You live in a bubble!” she said, and from her admonishing tone, I could sense this was my fault.

    “You seem so alone. That’s what I just don’t get,” she went on. “In my neighborhood, we form rotations for anyone who needs help. Why, right now I’m one of a group bringing meals and visits to a seven-year-old boy who is dying of cancer. Where are your friends and neighbors? Where is family?”

    Ah. Friends....

    (pp. 187-189)

    I have become unmoored.

    I remember this feeling. Some years ago, I was hired as a very minor lecturer for a five-day trip between New York and London on the oldQueen Elizabeth II,the only ocean liner that still made regular transatlantic crossings. Although James had sailed across the Atlantic several times (beginning with his service in World War II), I had never been on the water for longer than an eight-hour ferry trip.

    So I was thrilled to be asked. James’s one-way passage, like mine, would be paid. We would sail away together. From old movies I had...

    (pp. 190-193)

    As I begin to fall asleep, I have learned to avoid thinking ahead, with a reassuring ripple of serenity. “Oh, yes! Martha is coming to help tomorrow after breakfast. I spent today doing all of my errands, and I can put off dealing with taxes another day. So tomorrow I will have a free morning!” My assumption is a mistake. It will alert the caregiver’s goblin.

    This goblin is the one who makes me trip as I take a carton of blueberries out of the refrigerator. I am hurrying too much, as usual, and I catch my shoe on an...

    (pp. 194-198)

    A yellow banana, a flowery mug, and a white plastic showerhead: picture them on my lavender Formica kitchen counter, carefully arranged so that light from the window above casts just the right luminous shadows.

    Does this perhaps remind you—if you are a museumgoer—of a Dutch still life? Everyday objects glowing with intensity and color?

    For me, this still life is an example of vanishing perspective. I am not thinking of an artist’s perspective, which I learned about years ago when I was briefly an art history major. No, this vanishing perspective is mine. Each of these three objects...

    (pp. 199-202)

    Suddenly we are at the beginning of the beginning of the end.

    I use those stuttering qualifiers because with Parkinson’s, no one knows exactly when the end will arrive. In the last few weeks, after a change in his medication (which may or may not have jolted him closer), James has begun showing many classic symptoms of late-stage Parkinson’s: rigidity, a masklike face, a disappearing voice that can only whisper occasional words, more difficulty in swallowing, a continuing withdrawal from the world around him. His dementia is not much worse. But he is often looking into the distance as if...

    (pp. 203-205)

    James died on Wednesday, July 7.

    After finishing “French Toast,” I think I knew. When I pictured James laughing at my story—he had not been able to laugh out loud for a long time—I had a feeling that I would not be writing as a caregiver again.

    For the previous week, James had been almost entirely bedbound. He slept throughout the night and off and on throughout the day. He spoke very little. He also seemed to have even more trouble swallowing, though Martha did not think he was much worse. Nor did the gentle, loving, and quietly...

    (pp. 206-209)

    Sometimes, when I am far from home, I take comfort in picturing James’s wedding ring.

    When James and I decided to get married, he designed two matching wedding rings. Carrying a simple sketch, he happily marched me into a goldsmith’s shop. Both rings would be broad gold bands, with a hexagonal raised surface in the center. On my ring, as if it were a tiny canvas, James instructed the goldsmith to inscribe a small drawing.

    This drawing was James’s unique signature. He ended most of his notes and letters with it: a cartoon of his face, a fringe of balding...

  49. CODA
    (pp. 210-210)

    During my years of caregiving, friends sometimes worried about my ability to care for James at home, and sometimes I worried about it myself. Would I be able to keep this commitment? Recently, cleaning out my files, I found the handwritten index card with my vows to James on our wedding day. When I reread that little card, I had my answer. Like all caregivers, I did the best I could.

    James, I promise to love and cherish you—to comfort and encourage you—to do what I can about your pain—and to celebrate your joy.

    I promise to...

    (pp. 211-213)
  51. Back Matter
    (pp. 214-214)