"When I first stumbled across Dr. Alzheimer in my brain, he was an occasional nuisance. He would empty a room full of memories here and there, and cause a couple of doors to stick, but I devised strategies to get around his tricks. Later, he became a frustrating pain…Now, he is a constant companion."
These words, taken from Richard Taylor’s illuminating book, titled Alzheimer’s From the Inside Out, succinctly describe his journey along the twisting path of Alzheimer’s disease. Richard Taylor, Ph.D., is a retired psychologist. He has lived with dementia, probably of the Alzheimer’s type, for five years.
Taylor likens the time from when his daughter whispered into her mother’s ear, "There’s something wrong with Dad," to the time, after a year of tests, he was told, "You have dementia, probably of the Alzheimer’s type," to purgatory. A place in limbo.
After the diagnosis, he wonders if not knowing was better than knowing, for sure. He writes, "I have moved out of purgatory and back into the world of the living - but now, I must live with and in Alzheimer’s disease"
"Alzheimer’s From the Inside Out" is a collection of essays written by a man whose intellect was his identity. He was a teacher. He was a quick-witted and informed friend and family man. He was even, perhaps, a bit intellectually intimidating to the average person. That was then.
This is now. The mind-robbing disease of dementia, probably of the Alzheimer’s type, has become a part of who Taylor is. Always the intellectual, Taylor decided that the only way to make any sense of this journey was to write about it. To chronicle the journey. The result of this decision is this remarkable journal.
In "What Is It Like to Have Alzheimer’s Disease?" Taylor writes, "Right now, I feel as if I am sitting in my grandmother’s living room, looking at the world through her lace curtains. From time to time, a gentle wind blows the curtains and changes the patterns through which I see the world. There are large knots in the curtains and I cannot see through them."
Other essays in the section titled "From the Inside Out," include "My Shirt Is Broken," "Am I Half Empty or Half Full?," and Am I My Brain? Or Is My Brain Me?,"
With these essays, Taylor gives us an up-close view of his struggle to understand himself and where he was in the scheme of reality. It’s fascinating, it’s frightening, it’s sorrowful. His struggle reminds me of my dad after his brain surgery. During one of his few lucid moments, Dad said to me, "My universe is getting so small."
While reading Taylor’s book, the reader feels the shrinking of his universe.
I was my dad’s caregiver. I tried very hard to figure out what was going on in his head, so I could go with it and help him feel safe. I felt that I often succeeded. I’m painfully aware that, at times, I failed. If I ever had the feeling that I did succeed on a regular basis, Taylor’s section titled "From the Outside In," threw cold water on that delusion.
In chapters like "Whose Fault Is It That I Don’t Understand You?, Hello? I’m Still Here! And " A Silent, One-Sided Conversation with My Caregivers," Taylor makes it very plain that, hard as we might try, we can never truly understand. He writes "…we believe we are on the same road, we are, in fact confined to our own lanes. We can’t cross over the double yellow line."
"Taylor writes that, "The responsibility for understanding each other falls primarily on the caregiver and, as the disease progresses, almost exclusively on the caregiver…it is the caregiver who is best equipped to adapt to the observed changes in his or her loved one."
He does, however, try to understand the caregiver’s plight.
He writes, "How can I know it is happening and be unable to do anything about it? How can I talk about it and still not understand or control it? I don’t know. I was hoping you could help me understand."
"Alzheimer’s from the Inside Out" is a book that will move you, educate you and become part of you. You will assimilate some of what the Alzheimer’s patient feels. That will make you a better caregiver. If you, yourself, have Alzheimer’s and are on the same journey as Richard Taylor, you will definitely want to read his book.
I give workshops for caregivers titled "Looking At ife From Both Sides." I will be recommending this book to the groups I speak to.
"Alzheimer’s from the Inside Out," by Richard Taylor, is published by the Health Professions Press and is available in stores and on-line.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.