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  • Alzheimer's From The Inside Out (Taylor Excerpt)

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    Health Professions Press, an imprint of Paul H. Brookes Publishing Co., Inc.
    1K views9 pages
    Receiving a diagnosis of Alzheimer's disease profoundly alters lives and creates endless uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated? How does he feel as the disease alters his brain, his relationships, and ultimately himself? Richard Taylor provides illuminating responses to these and many other questions in this collection of provocative essays. Diagnosed with Alzheimer’s disease at age 61, the former psychologist courageously shares an account of his slow transformation and deterioration and the growing division between his world and the world of others. With poignant clarity, candor, and even occasional humor, more than 80 brief essays address difficult issues faced by those with Alzheimer’s disease, including the loss of independence and personhood unwanted personality shifts communication difficulties changes in relationships with loved ones and friends the declining ability to perform familiar tasks This rare, insightful exploration into the world of individuals with Alzheimer’s disease is a captivating read for anyone affected personally or professionally by the devastating disease. Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs. Family and professional caregivers will be enlightened by Taylor’s revealing words, gaining a better understanding of an unfathomable world and how best to care for someone living in it.

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    Receiving a diagnosis of Alzheimer's disease profoundly alters lives and creates endless uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated? How does he feel as the disease alters his brain, his relationships, and ultimately himself? Richard Taylor provides illuminating responses to these and many other questions in this collection of provocative essays. Diagnosed with Alzheimer’s disease at age 61, the former psychologist courageously shares an account of his slow transformation and deterioration and the growing division between his world and the world of others. With poignant clarity, candor, and even occasional humor, more than 80 brief essays address difficult issues faced by those with Alzheimer’s disease, including the loss of independence and personhood unwanted personality shifts communication difficulties changes in relationships with loved ones and friends the declining ability to perform familiar tasks This rare, insightful exploration into the world of individuals with Alzheimer’s disease is a captivating read for anyone affected personally or professionally by the devastating disease. Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs. Family and professional caregivers will be enlightened by Taylor’s revealing words, gaining a better understanding of an unfathomable world and how best to care for someone living in it.

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    © All Rights Reserved
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    1K views9 pages

    Alzheimer's From The Inside Out (Taylor Excerpt)

    Uploaded by

    Health Professions Press, an imprint of Paul H. Brookes Publishing Co., Inc.
    Receiving a diagnosis of Alzheimer's disease profoundly alters lives and creates endless uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated? How does he feel as the disease alters his brain, his relationships, and ultimately himself? Richard Taylor provides illuminating responses to these and many other questions in this collection of provocative essays. Diagnosed with Alzheimer’s disease at age 61, the former psychologist courageously shares an account of his slow transformation and deterioration and the growing division between his world and the world of others. With poignant clarity, candor, and even occasional humor, more than 80 brief essays address difficult issues faced by those with Alzheimer’s disease, including the loss of independence and personhood unwanted personality shifts communication difficulties changes in relationships with loved ones and friends the declining ability to perform familiar tasks This rare, insightful exploration into the world of individuals with Alzheimer’s disease is a captivating read for anyone affected personally or professionally by the devastating disease. Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs. Family and professional caregivers will be enlightened by Taylor’s revealing words, gaining a better understanding of an unfathomable world and how best to care for someone living in it.

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    © All Rights Reserved
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    Copyright 2007 by Health Professions Press, Inc. All rights reserved.

    Contents
    About the Author. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiii Preface: The Right Write Stuff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xv A Note from Linda Taylor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xix Picture Gallery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xxiv I What Is it Like to Have Alzheimers Disease? Jesus, Albert, Alzheimers, and Richard. . . . . . . . . . . . . . . . . . . 3 There Is No Such Thing as Alzheimers Disease! . . . . . . . . . . . 6 What Is It Like to Live in Purgatory? . . . . . . . . . . . . . . . . . . . . 13 What Is It Like to Have Alzheimers Disease? . . . . . . . . . . . . . 15 They Are Glad They Caught It Early. Am I? . . . . . . . . . . . . . . 18 The End of Act One . . . And Now, an Intermission of Indeterminate Length . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Cogito Ergo Sum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 My Last Six Words . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Back to the Future . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 FAQs and FGAs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29 Alzheimers Disease, Suicide, and Death . . . . . . . . . . . . . . . . . 33 What Is It Like to Have Alzheimers DiseaseThree Years Later . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Four No Trump . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 We Have a Pill. Alzheimers Can Be Treated! . . . . . . . . . . . . 41 Dreams, Drugs, Alzheimers, and Me. . . . . . . . . . . . . . . . . . . . 46 I Wish I Were a Nude Mouse . . . . . . . . . . . . . . . . . . . . . . . . . . 49 I Have Been Diagnosed with Alzheimers Disease . . . . . . . . 51 While Rome Burns . . . A Parable . . . . . . . . . . . . . . . . . . . . . . . 52 Trying to Figure It Out . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54 Checking Back in During the Intermission: Whats It Like to Have Alzheimers?. . . . . . . . . . . . . . . . . . . 57 Volcanoes, Fears, and Alzheimers Disease . . . . . . . . . . . . . . . 59 Hemingway, Alzheimer, and Taylor . . . . . . . . . . . . . . . . . . . . . 62 Waiting for . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 Disabling Enablers. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67 Oh, Ive Done That Myself a Million Times! . . . . . . . . . . . . 69
    v
    Copyright 2007 by Health Professions Press, Inc. All rights reserved.

    vi

    CONTENTS

    II From the Inside Out The Chase for Yesterday . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75 Whats the Up Side to Having Alzheimers Disease?. . . . . . . . 77 Pride Precedes the Fall . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79 Safe and Sound . . . Unsound and Safe . . . . . . . . . . . . . . . . . . 82 I Am a Verb . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 84 Whatever Happened to Hope? . . . . . . . . . . . . . . . . . . . . . . . . . 87 Moving From Living with My Mind to Living in My Mind . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89 And the Name of the 3,000-Pound Elephant Is Fear. . . . . . 91 Its On the Tip of My Tongue . . . . . . . . . . . . . . . . . . . . . . . . . . 95 I Can Read! I Cant.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97 Sing-along with Alois and Richard . . . . . . . . . . . . . . . . . . . . . . 99 My Shirt Is Broken. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101 Am I Half Empty or Half Full? . . . . . . . . . . . . . . . . . . . . . . . . 104 The Flesh Is Weak(er), but My Spirit Is (Still) Strong . . . . . 108 Will the Real Dr. Alzheimer Please Stand Up? . . . . . . . . . . . 110 Alzheimers Disease. Alzheimers Disease. Alzheimers Disease! . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113 Am I My Brain? Or Is My Brain Me?. . . . . . . . . . . . . . . . . . . . 117 Good Habits and Mindless Patterns . . . . . . . . . . . . . . . . . . . . 119 You Sure Dont Talk Like You Have Alzheimers (The Great Pretender) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 121 Knock, Knock . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 124 What Will I Do Today?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126 Drifting Away From My Head and into My Heart . . . . . . . . . 128 Falling. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130 Will the Real Richard Taylor Ever Reveal Himself to Me? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133 III From the Outside In Whose Fault Is It That I Dont Understand You? . . . . . . . . . 143 If It Talks Like an It and Gets Lost Like an It, Is It an It? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 148 A Stranger in a Strange Land . . . . . . . . . . . . . . . . . . . . . . . . . 150 Hello? Im Still Here! . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152 Christina, Mrs. Hippopotamus, and Me . . . . . . . . . . . . . . . . 154 Muddled Puddles. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 156 A Distinction Without a Difference . . . . . . . . . . . . . . . . . . . . 158
    Copyright 2007 by Health Professions Press, Inc. All rights reserved.

    CONTENTS

    vii

    Play It Again, Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . 161 My Champion or My Hero? . . . . . . . . . . . . . . . . . . . . . . . . . . 163 Once Again, My Children Believe They Know More Than I Do . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 166 Sex, Side Effects, Alzheimers, and Intimacy . . . . . . . . . . . . . 169 Hanging On with My Tongue . . . . . . . . . . . . . . . . . . . . . . . . . 172 A Silent, One-Sided Conversation with My Caregivers . . . . . 174 Religion, Spirituality, Alzheimers, and Richard . . . . . . . . . . 175 Plants as Pets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179 Give Me Your Money, Your Car, and . . . . . . . . . . . . . . . . . . 181 Oh My God! Wheres Richard? . . . . . . . . . . . . . . . . . . . . . . 184 This Little Light of Mine. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 186 Am I to Be My Spouses Son? . . . . . . . . . . . . . . . . . . . . . . . . . 189 Okay? Okay! Okay.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 192 Have You Ever Participated in One of These Conversations? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194 Is It Okay to Say You Have a Touch of Alzheimers? . . . . . 196 Here! Take This! . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 199 What Is It Like Not to Have Alzheimers Disease? . . . . . . . . 202 There Is Something (More) Wrong with Dad . . . . . . . . . . . . 204 Time to Clean Up Your Act. . . . . . . . . . . . . . . . . . . . . . . . . . . 207 Dont Worry About Anything . . . Well Take Care of It. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 211 Should We Do unto Others What We Perceive They Have Already Done unto Us?. . . . . . . . . . . . . . . . . . . 215 When Most All Has Been Said . . . Little Has Been Done . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 218 IV Dear Doctor . . . If I Were an M. Instead of a Ph. D. . . . . . . . . . . . . . . . . . . . . 233 From My Heart to My M.D.s Ears . . . . . . . . . . . . . . . . . . . . . 226 Do No Harm . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 232 Appendix: What You Can Do . . . . . . . . . . . . . . . . . . . . . . . . . . . . 000 Taking Care of Your Favorite Organ . . . . . . . . . . . . . . . . . . . 239 Best Friends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 241 Act Up! Act Out! Act Now! . . . . . . . . . . . . . . . . . . . . . . . . . . . 243 Web Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245
    Copyright 2007 by Health Professions Press, Inc. All rights reserved.

    What Is It Like to Have Alzheimers Disease?

    Copyright 2007 by Health Professions Press, Inc. All rights reserved.

    Alzheimers (AHLZ-high-merz) disease is a progressive brain disorder that gradually destroys a persons memory and ability to learn, reason, make judgments, communicate, and carry out daily activities. As Alzheimers progresses, individuals may also experience changes in personality and behavior, such as anxiety, suspiciousness, or agitation, as well as delusions or hallucinations. The disease is the most common cause of dementia. Dementia is a collective name for progressive degenerative brain syndromes that affect memory, thinking, behavior, and emotion. Symptoms may include: Loss of memory Difculty in nding the right words or understanding what people are saying Difculty in performing previously routine tasks Personality and mood changes Dementia is not a normal part of aging. It knows no social, economic, ethnic, or geographical boundaries. Although each person will experience dementia in his or her own way, eventually those affected are unable to care for themselves and need help with all aspects of daily life. There is currently no cure, but treatments, advice, and support are available.
    http://www.alz.co.uk/alzheimers

    Copyright 2007 by Health Professions Press, Inc. All rights reserved.

    Jesus, Albert, Alzheimers, and Richard

    Intelligent people understand others. Enlightened people understand themselves.


    Lao Tzu

    fter spending years fruitlessly searching for a historical record of a person named Jesus, Albert Schweitzer concluded that when someone told him about Jesus they were telling him more about themselves than Jesus; so, too, with Alzheimers and these essays. There is little historical record of and by individuals living with Alzheimers disease. First-hand accounts of the disease are few, and all end about the same time in the progression of the disease: Stage 3when the disease forever blocks the individuals ability to provide self-reports of the diseases impact. On the other hand, there is a growing body of personal journals by caregivers of people with Alzheimers. Like the Gospels of the New Testament, these recollections attempt to recapture the essence of a loved one through a collection of the loved ones words and actions. Like the Gospels, they are more the reections and perceptions of the writers than the loved This is my attempt to one. When placed next to each other, they leave a record of what do not always agree. They sometimes conis going on between tradict each other. They do not all include my ears. Its not the the same words and events. Since there is no record of what the loved one actually said medical record. Its and thought, readers are left with their own not the personal interpretations of the second-hand recollecaccount of my life. tions. So, too, with Alzheimers disease. No Its not a psychoone who has the disease has ever returned from her or his demise and presented the social report. truth of Alzheimers. As the disease engulfs a mind, the ability to report what is going on within the mind is lost to the outside world. This is my attempt to leave a record of what is going on between my ears. I am writing
    3
    Copyright 2007 by Health Professions Press, Inc. All rights reserved.

    TAYLOR

    about the disease as it is expressed by and is having an impact on my mind, my perceptions, and my worldas I perceive the process. I make no claims to speak to the Alzheimers experience. Although I have spoken to hundreds of individuals in early-stage, many in secondstage, and a few in late-stage Alzheimers, no one sees the disease, himor herself, or caregivers exactly as do I. There is no one Alzheimers experience which, if understood, becomes the key to understanding individuals with the disease. However, there do seem to be some concerns and reactions that can be generalized to many individuals with the disease. It is to those general concerns and experiences I hope these essays speak. I speak of them as I have experienced them. There is no doubt that my own issues, life experiences, and perceptions avor these essays. But, I have tried not to bore you with this is your life, Richard, and instead present you with this is how I am living my life as I share my brain with Alzheimers disease. When I started to write these essays, it was not my intent to address them to caregivers. I wrote to clarify for myself what was going on with and in me. Then, I showed them to a few other people who shared my diagnosis of early-onset, early-stage Alzheimers disease. I saw their eyes brighten and sometimes ll with tears as they read of some of their own experiences in my writings. It was then that I decided to share my writings with others. I wanted others to know they are not alone with an Alzheimers changing mind. There are others with them on the Alzheimers road less traveled who are uneasy about the present and the future, and unable to gure things out as they have in the past. It is in my nature to think about thinking. I have never been shy when it came to speaking. Some folks dont think much about their thinking processes. Some dont think (or worry) about the future. Even fewer think about how thinking and the disruption of our thinking processes affects our future. I do. When I have shown these writings to many caregivers, they have asked me pointed questions from their perspective. How do I think they could best engage me or others with the disease in ways that would be supportive and more in tune with their loved ones inner thoughts and needs? I do not want to become an advice columnist on caregiving. I do want caregivers to read my writings and gure out for themselves how this information and these insights can help them understand, appreciate, and honor their loved ones. Finally, to readers who do
    Copyright 2007 by Health Professions Press, Inc. All rights reserved.

    ALZHEIMERS FROM THE INSIDE OUT

    not have the disease and are not responsible for anyone with the disease but realize the bell could toll for thee: This is a record of my thoughts and my life, and it may not exactly t your life. I hope the fears, issues, and problems that Alzheimers disease has raised in my life will encourage you to think about your own life in ways you may not have considered previously. When people tell me about their Alzheimers experiences, I, as with Schweitzer and his conversations with people about Jesus, know they are telling me more about themselves than about the Alzheimers experience. We have no proof of the Alzheimers experience. In fact, no one really knows if the people who have been told they have dementia, probably of the Alzheimers type really have Alzheimers disease. The fact will not be established until they die, and then only if they had previously given permission for their brain to be removed and examined for the medical signature of the disease.

    Copyright 2007 by Health Professions Press, Inc. All rights reserved.

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