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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Also available through: Baker and Taylor, OverDrive, Gardners, and Follett
About the Author
Preface: The Right Write Stuff
A Note from Linda Taylor
I. What Is It Like to Have Alzheimer’s Disease?
- Jesus, Albert, Alzheimer’s, and Richard
- There Is No Such Thing as Alzheimer’s Disease!
- What Is It Like to Live in Purgatory?
- What Is It Like to Have Alzheimer’s Disease?
- They Are Glad They Caught It Early. Am I?
- The End of Act One … And Now, an Intermission of Indeterminate Length
- Cogito Ergo Sum
- My Last Six Words
- Back to the Future
- FAQs and FGAs
- Alzheimer’s Disease, Suicide, and Death
- What Is It Like to Have Alzheimer’s Disease—Three Years Later
- Four No Trump
- “We Have a Pill. Alzheimer’s Can Be Treated!”
- Dreams, Drugs, Alzheimer’s, and Me
- I Wish I Were a Nude Mouse
- “I Have Been Diagnosed with Alzheimer’s Disease”
- While Rome Burns … A Parable
- Trying to Figure It Out
- Checking Back in During the Intermission: What’s It Like to Have Alzheimer’s?
- Volcanoes, Fears, and Alzheimer’s Disease
- Hemingway, Alzheimer, and Taylor
- Waiting for…
- Disabling Enablers
- I’ve Done That a Million Times Myself!
Section II. From the Inside Out
- The Chase for Yesterday
- What’s the Up Side to Having Alzheimer’s Disease?
- Pride Precedes the Fall
- Safe and Sound … Unsound and Safe
- I Am a Verb
- Whatever Happened to Hope?
- Moving From Living with My Mind to Living in My Mind
- And the Name of the 3,000-Pound Elephant is “Fear”
- It’s On the Tip of My Tongue
- “I Can Read!” “I Can’t.”
- Sing Along with Alois and Richard
- My Shirt Is Broken
- Am I Half Empty or Half Full?
- The Flesh is Weak(er), but My Spirit Is (Still) Strong
- Will the Real Dr. Alzheimer Please Stand Up?
- “Alzheimer’s Disease. Alzheimer’s Disease. Alzheimer’s Disease!”
- Am I My Brain? Or Is My Brain Me?
- Good Habits and Mindless Patterns
- You Sure Don’t Talk Like You Have Alzheimer’s (The Great Pretender)
- Knock, Knock
- What Will I Do Today?
- Drifting Away From My Head and Into My Heart
- Will the Real Richard Taylor Ever Reveal Himself to Me?
III. From the Outside In
- Whose Fault Is It That I Don’t Understand You?
- If It Talks Like an It and Gets Lost Like an It, Is It an It?
- A Stranger in a Strange Land
- Hello? I’m Still Here!
- Christina, Mrs. Hippopotamus, and Me
- Muddled Puddles
- A Distinction Without a Difference
- “Play It Again, Caregivers”
- My Champion or My Hero?
- Once Again, My Children Believe They Know More Than I Do
- Sex, Side Effects, Alzheimer’s, and Intimacy
- Hanging On with My Tongue
- A Silent One-Sided Conversation with My Caregivers
- Religion, Spirituality, Alzheimer’s, and Richard
- Plants as Pets
- “Give Me Your Money, Your Car, and…”
- Oh My God! Where’s Richard?
- This Little Light of Mine
- Am I to Be My Spouse’s Son?
- Okay? Okay! Okay.
- Is It Okay to Say You Have a “Touch” of Alzheimer’s?
- Here! Take This!
- What Is It Like Not to Have Alzheimer’s Disease?
- There is Something (More) Wrong with Dad
- Time to Clean Up Your Act
- “Don’t Worry About Anything…We’ll Take Care of It.”
- Should We Do unto Others What We Perceive They Have Already Done unto Us?
- When Most All Has Been Said…Little Has Been Done
- If I Were an M. Instead of a Ph.D.
- From My Heart to My M.D.’s Ears
- Do No Harm
Appendix: What You Can Do
- Taking Care of Your Favorite Organ
- Best Friends
- Act up! Act Out! Act Now!
Richard Taylor, Ph.D. (decd. 2015), was a psychologist who was diagnosed with Alzheimer’s-type dementia at the age of 61. He started writing short essays for his own benefit—trying to better understand what was going on inside of him. He sought out others with dementia and began forming online chatrooms, which eventually grew into an international network. Through his writing and other communication efforts, he became a champion for individuals with early-stage and early-onset Alzheimer’s disease, speaking regularly throughout the U.S. to avid audiences about the challenges of living with dementia.
Dr. Taylor had been recognized with innumerable awards for his advocacy work and his efforts to give voice to the millions of people living with this disease. He helped to found the Dementia Advocacy and Support Network International (DASNI) and was a moving force in the establishment of the Dementia Advisory Committee of the national Alzheimer’s Association, a group comprised of people living with dementia, as well as a similar committee for the Alzheimer’s Foundation of America.
Dr. Taylor garnered international recognition and was a regular presenter for many years at the annual conference of Alzheimer’s Disease International.
“Dr. Taylor’s words shed light on a very dark experience and the reader is led out of the darkness by his frankness, his humor, and most of all his spirit “alive within me.” His penetrating and pleading comments related to care giving cause the reader to take a deep breath, pause, and move forward with much greater insight into the complexity of these emotional relationships. Are these innovative words asking too much of the reader? I think not. We have been shielded too long from the mysteries of Alzheimer’s disease; these fresh words compel us to shed our misperceptions and enter into the world of those who command our attention. Through Dr. Taylor’s beautiful language and poignant reflections, we approach some clarity about the long neglected and misunderstood phenomenological experience of those living with Alzheimer’s disease.”
—Naomi D. Nelson, Ph.D., Psychologist, Baylor College of Medicine
“This is not an ordinary book. It is an extraordinary collection of anecdotes, ruminations, insights, comparisons, literary allusion and blinding insights. Be prepared to be challenged. Be prepared to reflect on your own human failings and joy at not having Alzheimer’s disease. But most importantly, be prepared to read this book.”
—Dementia Journal (UK)
“Such a personal telling of a tale . . . Part Eric Berne, part Henry Fonda in On Golden Pond, part the final movement of Mahler’s Das Lied von der Erde, this work moves one to tears.”
-David O. Staats, M.D., University of Oklahoma Health Sciences Center, Doody’s Review Service
“How poignant [these essays] are in expressing life with AD. [This] is a perspective I had not heard before and the insight is invaluable to me as a caregiver for my dad.”
–Molly G., family caregiver
“After reading this book I have come to the conclusion that this is perhaps the most important book in the field of dementia care ever written … Dr. Taylor writes with passion and humor about a wide range of topics that capture the experience of living with a diagnosis of “probable Alzheimer’s disease” … These poignant essays come from the heart and the soul of a sensitive and intellectually gifted man who has become a national champion and advocate for the millions of people living with this disease.”
-Linda L. Buettner, Ph.D., CTRS, FGSA, Professor of Health Science, Florida Gulf Coast University
“[These essays] have given me lots of insight as to what goes on inside my mom’s mind. It’s hard being on the outside trying to figure out what’s going on inside.”
–Debra K., family caregiver
“Among the millions with this cruel disease, Richard is rare in that his preserved memory, language, and thinking skills made possible these essays about his experience of the disease. He offers valuable insights to family and professional caregivers seeking to uphold the dignity of all people living with the disease. A debt of gratitude is owed to him, his wife, and his family for refusing to go gentle into that good night.”
-Daniel Kuhn, M.S.W., author of Alzheimer’s Early Stages
“Richard is our canary in the coal mine. He is chirping, trilling, humming. His advancement through life’s thickets lead him inside, around, and back. His questions, yearnings, satisfactions, regrets, challenges, humor, and provocations are warnings we all must head.”
–Laura S., caregiver
“Written with sensitivity, humor, and passion, Alzheimer’s from the Inside Out describes the author’s sometimes bumpy, but always insightful, journey with Alzheimer’s disease. Telling his stories in a series of informative vignettes, Richard challenges us all to be more authentic and work to make life better for persons with dementia–not tomorrow, but today!”
-Virginia Bell, M.S.W., co-author, The Best Friends Approach to Alzheimer’s Care
“I thought I understood what life was like for my Alzheimer’s-affected parents-until Richard’s story enlightened me with insight into an unimaginable world. Every family with an elderly loved one, and every medical professional who works with elders, should read this gripping and marvelous book!”
-Jacqueline Marcell, author of Elder Rage and host of Coping with Caregiving radio program
“Extraordinary, brilliantly insightful, inspirational, courageous, thought-provoking–there is no end to the positive descriptors that can be attached to this amazing book by Richard Taylor. Alzheimer’s from the Inside Out is not only a must read for persons with Alzheimer’s and their personal and professional care partners, it is, plain and simple, a must-read book.”
-Carol Bowlby Sifton, family caregiver, clinical dementia consultant, editor of Alzheimer’s Care Quarterly, and author of Navigating the Alzheimer’s Journey