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An Inside Look At Alzheimer's

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By IRENE MAHER, Channel 8 Medical Editor

Published: November 23, 2007

I recently served as emcee at a fundraiser for the USF Suncoast Alzheimer's & Gerontology Center. It was a challenging job because the audience was especially chatty.

But you could have heard a pin drop during the keynote speaker's presentation.

Psychologist Richard Taylor, who lives in Houston, spoke eloquently on what it's like to live with a diagnosis of Alzheimer's and to be completely aware of its awful progression. Taylor was diagnosed with the disease five years ago at the age of 58. He wrote a book about it called "Alzheimer's From the Inside Out" (Health Professions Press).

Taylor's presentation on that November evening in Tampa was riveting. Rather than try to describe it, I asked Taylor if I could feature parts of his speech in my column. He agreed.

"I am Richard Taylor ... I represent, although I don't claim to speak for, more than 500,000 Americans who also involuntarily share first-hand the experience of living with a brain which is being both reconfigured and destroyed by Alzheimer's disease. We are all under the age of 65. …

"I have become a reluctant expert in what it's like living with Alzheimer's. I have become an active speaker sharing with others my experiences with the disease. ... After all, if we don't tell you what it's like to live with the disease, how will you ever know? ...

"I don't have a lump, a rash, a fevered brow for others to see and touch indicating I have this or that disease. My disease has probably been altering and attacking my brain for the past 15 years. ...

"Initially, I was aware and frustrated when I ran into a symptom of the disease. I couldn't recall, was confused, felt misunderstood, searched for a word — and I knew that was Dr. Alzheimer's work. Now, I am less aware when I am in the disease. I wander about, act agitated, I misunderstand and am misunderstood. I don't remember, I become angry and while I seem in-the-moment, I am in fact, in the disease. ...

"Currently I feel as if I am looking at the world through a stained-glass window. Even the clear panes always provide a distorted view of what lies on the other side. ... It gets me in trouble once in a while when I hit a bubble or a thickness in the glass. I start thinking and acting like I know what is going on or at least that I can adjust to the variances in the glass, when in fact, I have quite a distorted view of what other people are seeing and thinking and saying. ... Everyone seems to be struggling with hanging on to yesterday's Richard. ...

"I imagine myself as always being one step behind the symptoms of the disease. Just when I believe I have figured out ways to cope with the current batch of symptoms it has generated between my ears, it morphs me into a new set of symptoms and the chase is on again. ...

"The personal and interpersonal consequences of this disease are, in my mind and heart, the least attended to and most profound consequences of the disease: a changing personality — more withdrawn, more paranoid, more defensive; more fears, more insecurities about myself, my ability to know what is going on around me, a self awareness which seems to come and go; these kinds of symptoms translate into occasional wandering, more arguments, more paranoia, more insecurities, more of the disease and less of me — these are consequences which I and my caregivers struggle with every day. ...

"Please consider and reconsider these concerns of mine: Everyone living with my diagnosis is and will be, until the moment of their death, a whole and complete human being. Every day of my life I will be, in my own mind, Richard. I am neither half full nor half empty. I am Richard. I am not fading away. Will you promise to always treat me as Richard? Or will there come a time when I am seen as Richard's shell?

"I want and need to feel connected to myself, to you and to today. Please don't exclude me from the decision-making processes that dramatically impact my own life. Ask me, include me and give me the benefit of the doubt. Always tell me what you believe to be the truth, but don't argue about it with me. Simply and lovingly let me decide if I accept it or not. And for both our sakes, don't lie to me.

"I want and need to give and receive love. Even when I can't remember your name, will you please love me the same as when I could remember your name? Is a large part of the reason you love me or care about me because I can remember your name? Is the fact that I can remember as you do a prerequisite for treating me as a whole and complete person? Is our love for each other really unconditional?

"Treat me as an adult. I may sometimes act like a child, but I am still an adult. Treat me as your parent, your best friend. I'm still home, you know, even if I can't always open the door."

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