Understanding Alzheimer's From One Who Knows
Alzheimer's From the Inside Out
By Richard Taylor
Health Professionals Press, 2007, $19.95
To fully appreciate Richard Taylor's extraordinary accomplishment in writing this book, we have to forget everything we think we know about dementia.
We have to imagine Dr. Taylor, a 58-year-old psychologist, professor, and management consultant sitting in his doctor's office and hearing the words, "You show signs of dementia, probably of the Alzheimer's type."
After he was diagnosed with the disease in 2001, he spent the next five years writing his way toward understanding his symptoms. He felt driven to understand how they would affect the quality of life as he had known it and how they would affect the lives of those who loved him and who cared for him as the disease progressed.
"Writing," he quips, "became my 'therapy' without a co-pay."
Throughout the 80+ essays --you might even call them musings -- which comprise "Alzheimer's From the Inside Out," one fact is clear: Richard Taylor does not intend to go gently into the mental darkness of Alzheimer's disease. Nor does he want anyone else to.
His essays are both sad and hopeful. Sometimes he sounds curmudgeonly. Often, he is funny. Usually, his words are inspiring.
He worries that his family's "love for the former me" will be replaced with a resigned acceptance of the "new me." "Fear," he says, "is the name of the 3,000 pound elephant."
To the poignant question, "Am I to become my wife's son?" he suggests that one way to keep relationships from disintegrating is to use "The Best Friends Approach to Alzheimer's Care" as described in a book of the same name.
His "Dear Doctor" essay is must-reading for every health care professional and his "Okay? Okay! Okay..." comments will forever change the way you respond to someone asking or telling you "Okay?!" as they don't bother to listen to your answer.
He especially wants to make a difference for folks like himself: those who have been diagnosed with early on-set or who are in the early stages of one of the 20+ diseases of dementia. He believes that current thinking and treatment disables them: that it does them a disservice by tossing them into a "one treatment fixes all" that erodes self-dignity and discourages preservation of self.
He believes it's crucial that treatment emphasize each person's unique interests and capabilities. He asks: "If I didn't enjoy playing bingo or arts and crafts before my disease, what makes you think I'd enjoy it now?"
Fortunately for him -- and now for us -- his language skills are mostly intact, even after seven years since he was diagnosed. Voice-activated equipment types his spoken words into the computer. He laments that it now takes him all day to write what used to take him just 10 minutes.
But he doesn't let that stand in his way. He continues to write for newsletter and medical journals and, just recently, he started publishing his own online monthly newsletter. With the aid of a caretaker, he also continues to travel around the country speaking at meetings and medical conventions.
In writing this book, Taylor has given us the tools we need to fight the good fight against this disease in our communities and in our personal lives. He tells us to ensure our own brain health by having yearly brain checkups.
He asks us to fight for others. In the essay, "Act Up! Act Out! Act Now!" he urges us to convince legislators that "It should be a crime against humanity for individuals with a confirmed diagnosis of some form of dementia to experience delays in receiving (and, in some cases, be denied outright) the benefits of disability insurance for which they have been paying the premiums for the past 30 to 60 years!")
He confirms his life by writing, "I write, therefore I am." By writing this book, he has given us the priceless gifts of insight into and understanding of a disease that needs more warriors like him, you, and me. For more information about Richard Taylor and his writings, go to www.richardtaylorphd.com or write to him at firstname.lastname@example.org.
FirstHealth Offers Printed Resources
Twenty-five years ago this month, President Ronald Reagan proclaimed November "National Alzheimer's Disease Awareness Month." At that time, the Alzheimer's Association was just three years old and there were fewer than 2 million Americans diagnosed with Alzheimer's.
Now, 25 years later, the number has risen to 5.2 million and is projected to reach 11-16 million by 2050. Sadly, President Reagan himself was diagnosed with Alzheimer's 11 years after he issued the Proclamation.
This year, in an annual message reminding the public of National Alzheimer's Disease Awareness Month, George W. Bush wrote, "...we recognize the dignity and courage of the men and women living with Alzheimer's disease. We also honor the devoted family members and caretakers who bring them love and comfort, and we underscore our dedication to finding a cure for this tragic disease...I call upon the people of the United States to observe this month with appropriate programs and activities."
"During this time of recognition and thanksgiving, let us be aware of and give thanks to FirstHealth of the Carolinas for the little known, much-valued service they offer to the community through the Health Sciences Library," says Wiltjer.
Tucked away on the second floor of the hospital's Administrative Conference Center, the library houses reference books, journals, audiovisuals, electronic databases, and newspapers which community members may access, as well as books and audiovisuals which they may borrow.
A variety of reference, search, and interlibrary loan services are offered, including individual and small group education and training on how to use the library's resources. A limited number of computers with intranet and Internet access to medical databases are also available.
The Health Sciences Library is open Monday through Friday, 8 a.m. to 4:30 p.m. The professional and caring staff, Daniel Oates, manager, and Suzanne Sinclair, library technician, both have master's degrees in library science with in-depth medical knowledge.
If you have any questions, call 715-1588 or access www.firsthealth.org for more information about the services offered through the Health Sciences Library.
Contact Diane Wiltjer at DianeWiltjer@aol.com.
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