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No Saints around Here

A Caregiver’s Days

Susan Allen Toth

Publication Year: 2014


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 Here is the beginning of a conversation in which so many of us may someday find our voices.

Published by: University of Minnesota Press

Title Page, Further Reading, Copyright, Dedication

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Contents

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pp. vii-x

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Preface

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pp. xi-xvi

Caregivers do not forget.
My friend Barb and I were looking together at a realtor’s glossy brochure. It was filled with pictures of the house where my husband James and I had lived for twenty- five years. Two years after his death, I had finally acknowledged it was too big and expensive for me. For months I had worked feverishly to dismantle the stuff of our life together...

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Introduction

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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...

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No Saints around Here

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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.”...

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Together

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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...

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Red Flag in the Mailbox

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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.”...

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His Cold, My Cold

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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...

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Let Me Count the Ways

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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?...

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Failing Battery

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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.”...

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Sleeping with a Wombat

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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...

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Stuff, Stuff, Stuff

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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...

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Overloaded

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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...

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The Nursing Home on the Hill

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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...

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Teeth Torture Time

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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...

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Time on the Tundra

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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 map or compass...

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How Is James?

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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...

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Priorities: Blue Jeans

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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...

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Smiling under Water

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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 book Present Moment, Wonderful Moment, he makes this transformation sound so simple...

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Beige Lies, Pink Lies, Purple Lies

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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...

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A Very Short Tooth Tale

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p. 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.”...

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Hanging On

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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...

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Absent Friends

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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...

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No Skipping to the Last Page

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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...

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My Adventures with Gentlemen’s Pads

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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...

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The Voice in the Bathroom Cupboard

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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...

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Just a Minute!

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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 is just 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 for just a minute! Cheerful isn’t always one of them...

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At the Foot of the Roller Coaster

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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...

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Gravy

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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 food...

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Home, Alone

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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...

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Through the Hospice Door

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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...

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Time, Again

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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...

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Off the Balance Beam

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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...

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Whatcha Know, Joe?

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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 Sunday Times crossword over the phone, I spotted a Sinatra clue. I was incredulous that she had never heard one of his classics....

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Obsessions

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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 watched Walk the Line, a romanticized but emotionally powerful biography of the young Johnny Cash. I was fascinated...

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The Last Christmas

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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.”...

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Silver Anniversary

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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. Twentyeight 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...

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The Net Is Larger Than You Imagine

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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.”...

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An Unexpected Corner of My Net

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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 sighed and said, “Susan, instead of just getting on your train, you are always too busy adding a long line of what- if boxcars.”...

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The Long Passage

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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 of Swan Lake floating far below. Although I could not see their faces, I could hear every note of Tchaikovsky’s haunting music...

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Census Day

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pp. 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.

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Living in a Bubble

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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...

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Unmoored

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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 old Queen 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 eighthour ferry trip...

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The Base Line

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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...

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Vanishing Perspective

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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?...

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French Toast

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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...

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Firestorm

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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...

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A Ring among the Ashes

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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...

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Coda

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p. 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...

Acknowledgments

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pp. 211-213

About the Author

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E-ISBN-13: 9781452941295
E-ISBN-10: 1452941297
Print-ISBN-13: 9780816692866

Page Count: 256
Publication Year: 2014

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