Press Materials: Alzheimer's from the Inside Out (Taylor)

Excerpted from Alzheimer's from the Inside Out, by Richard Taylor, Ph.D.

What Is It Like to Have Alzheimer's Disease?

What is it like to drive your car from Houston to Anchorage?

The answer depends on many things: the type of car you will drive, the age of the car, how well you maintained it, where you are in your trip, if others are helping you with the drive, if you have enough gas or access to a gas credit card, if you have accepted the fact you must drive to Anchorage, whether or not you are afraid of arriving in Anchorage.

What is it like to have Alzheimer's?

This, too, depends on many things: Do you have an existing group of individuals who are committed to your well being? Are you a proactive or a reactive person when it comes to dealing with doctors, your health insurance company, and yourself? Where do you live: Houston, Texas, or Houston, Nigeria ? Do you have insurance? Especially long-term care insurance? Does your culture and economic class encourage and promote younger generations taking responsibility and care of their family's older generations? There are dozens of important factors outside of yourself that will directly and significantly influence you and your inner experiences with the disease.

After meeting, speaking, and corresponding with hundreds of people who have Alzheimer's, I am convinced there is no universal answer to the question, "What is it like to have Alzheimer's?"

Since the disease process unpredictably and seemingly randomly destroys various cognitive processes and undermines the basis of most all understanding and memory, each person has a unique and personal way of dealing with the rate, the degree, and the various components of the syndromes we attribute to Alzheimer's disease. Neurologists who tell us they understand the disease because they see 4 or 40, or 400, individuals with Alzheimer's does not mean they understand me or you. Just as there really is no single "average" person, there is no meaningful "average" Alzheimer's disease experience.

I was diagnosed with dementia of the Alzheimer's type two years before I wrote this piece. I imagined, maybe hoped, that some day I would wake up and a heavy velvet curtain would have fallen during the night. I would wake up to a world where I could see shapes but not enough details to know what or who they were, sort of like Plato's flickering shadows on the wall produced by the fire in the cave.

Instead, 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. There is a web of lace connecting the knots to each other, around which I can sometimes see. However, this entire filter keeps shifting unpredictably in the wind. Sometimes I am clear in my vision and my memory, sometimes I am disconnected but aware of memories, and other times I am completely unaware of what lies on the other side of the knot. As the wind blows, it is increasingly frustrating to understand all that is going on around me, because access to the pieces and remembering what they mean keeps flickering on and off, on and off.

Thanks in large part to my family caregivers, I am still functioning in the non-Alzheimer's world. I drive, I learn (although I seem to forget much of what I learn), I teach, I love, I mostly understand—but not all the time, and not always the way others do. It is a constant effort to look around the lacy webs and to have to put effort into understanding and doing things that came naturally but a few months ago (cooking, reading, driving to a new store, remembering the recent past). Some activities hide beyond the knots and rarely have clarity (arithmetic, reading a watch, remembering what I just read). It is not a lot of fun, but I can still do it!

Does the disease increasingly dominate my life, or has the disease insidiously and largely unconsciously become a part of my life?

Does the chicken come first, who I am?

Does the egg come first, Alzheimer's disease?

Today, but not yesterday, I firmly believe: Individuals have a cold, have cancer, have the measles. Alzheimer's has the individual. Ask me again tomorrow!

I am trying to be rational and realistic, using tools that are rusting and increasingly out of sync with each other. In my writings you will feel me leaning one way in one paragraph (I am in a war with this disease and I will go down fighting. This is an opportunity for me to grow in ways few people have an opportunity to experience), or another way (I'm mad, I'm sad, and I feel sorry for myself. Why won't others join my self-pity party?).

My writings don't offer answers, just my own observations from my own increasingly unsure perspective.

The Chase for Yesterday

In the compulsive gambling community, there is a principle they call "the chase." After a compulsive gambler hits his first really, really big win, he spends the rest of his life chasing after the feeling of that first big score. Unfortunately, as with most addictions, more and more of the addictive substance produces less and less of a high. The person will never, ever feel the high of the first big win. You really cannot go home again!

I am in the early-middle of the Alzheimer's Chase. I am chasing the feeling I had prior to my neurologist saying, "You have Alzheimer's. We do have a medication which seems to slow the progress of the disease in some people, for some time." Unfortunately, the prescribed Alzheimer's medication produced what felt like gallons and gallons of stomach acid. So, naturally, I took another pill to get rid of the stomach acid. My gastroenterologist told me the acid had begun to wear away the lining of my esophagus. "Ultimately," he said, "you might develop throat cancer unless something is done about the acid." Enter yet another proton pump inhibitor, and a pill for the anxiety I felt concerning the possibility of throat cancer. As pills gained control over those side effects, I started to come to grips with the diagnosis of this life-shortening, and dignity-stripping, disease. I became really, really depressed! I took two pills twice a day in an attempt to bring my feelings back to the pre-Alzheimer's days, or at least that was the goal. Oh, and by the way, since I had just turned 60 years old, let's throw in a slightly enlarged prostate and two more pills. Swallowing one and a half handfuls of drugs twice a day offered me the opportunity to become more anxious. How about doubling my anxiety medication? Having trouble with my libido—they have a blue pill for that. Don't forget the OTC (over-the-counter) stuff: vitamin E, vitamin C, vitamin Bs 1–100, fish oil, and a mega pill of multivitamins and minerals.

I am an empty vessel into which I throw a hand and a half full of pills twice a day, and I desperately want the pills to reconstruct me into the person I was the day before the chase began—the day before I went to my neurologist.

When will the chase end for me?

What will my costly and all-out efforts to participate in the chase accomplish for me?

Will I ever be "myself" again?

What's the Up Side to Having Alzheimer's Disease?

Nothing that I can think of, right off the bat, but here are some thoughts on how my life has changed since I was diagnosed with Alzheimer's disease.

I talk more often and longer on the phone with my out-of-town family members.

We talk more about what is going on inside us rather than around us.

We get together more than weddings, funerals, and an occasional Christmas. I have discovered in my brother and myself a resonance of thought and feeling that I only sensed prior to the diagnosis. My spouse and I have developed a new level and intensity of closeness, an intimacy about our life as husband and wife. One of my children retired early from the Air Force and moved to Houston to help his mother and me. Along with my son and my daughter-in-law came my two grandchildren. Instead of seeing them four times a year, I see them four or more times a day!

I started to write again in my Simple Abundance Gratitude Journal (list four things each day for which you feel gratitude and do not repeat them again on your list). I take longer walks with my dog, Annie. We talk more, or at least I do.

I am a better teacher. I care about and try to show it to all my students, even the ones who do not care back. I initiate more e-mail contact, and I promptly answer all who write me. I am planning on a long-postponed rafting trip down the Grand Canyon , and I would like to take a Windjammer cruise (where passengers are a part of the crew on a large schooner).

I spend more time feeling and thinking about what is going on inside of me. Sometimes, this is good; most times, it is not. I am more in touch with me.

I have learned to recognize the difference between sympathy and empathy, and I have learned how to accept both of them. I don't care as much how well the Chicago Bears are doing this season. Formerly, a loss on their part on Sunday would produce a dour mood in yours truly for most of Monday.

You might say I have a deeper appreciation of what I should and should not respond to emotionally.

I give more of myself and most times expect nothing in return. Is this the "up side," or is this how I should have lived in the first place? In either case, these responses to the disease feel good.

Still, I couldn't really say, as some others with Alzheimer's do, that I am glad that I know that I have Alzheimer's, glad that I got the diagnosis early.

Muddled Puddles

From time to time, spouses, parents, friends, and children stumble through puddles and inadvertently splash water on themselves and each other, causing all parties to become upset. Usually, over time, the water dries, leaving only faint outlines on clothing and no marks on the skin. Alzheimer's disease seems to muddle these puddles. It seems to add an ingredient to the puddles which changes their nature.

When caregivers stumble through puddles, they are left with stains on their clothing and on their skin. When people with Alzheimer's stumble through the puddle, they are left with holes in their clothes which only they can see, and a stinging, burning sensation on their skin, which only they can feel.

Prior to my diagnosis, I stumbled from time to time. I forgot to do this or that. I said something that was true but I said it in an insensitive or inappropriate manner. I argued with my wife. I stumbled when dealing with others.

Now, when I forget, people tell me it is okay because it is the disease, not me.

Now when I make a mistake, people tell me it's the disease's fault, not mine.

When I blurt out something I would like to take back and swallow, people tell me that inappropriate outbursts simply come with the disease. When others tell me it is not my fault and attribute it to the disease, it leaves the stain of Alzheimer's on their clothing and skin, and a sharp burning sensation in my mind.

Prior to my diagnosis, my wife and I stumbled from time to time. We argued about inconsequential things: where we should eat, who spends more money on unnecessary clothes, where we should place the Christmas tree. These issues seemed to resolve themselves. Now when we argue, we both start out from the assumption that one person will not understand the other. I have the disease, and my wife has her fears which color her perceptions of everything. We are left stained and stinging, even by small, inconsequential puddles.

Prior to the diagnosis, I stumbled with others from time to time. I was sometimes a tad arrogant. I was also funny, clever, and usually very kind. Others were willing to overlook my drive. After all, I was frequently right! Now, I am characterized by others as sometimes out of control. "The disease has changed you," they tell me. "You aren't the person you used to be." I am burning and have no ointment to put on my oozing, bright-red first- and second-degree burns.

I react to puddles that never seemed to bother me before Dr. Alzheimer's discovery found its way into my brain. Others react to puddles that didn't seem to bother them before Dr. Alzheimer's discovery found its way into my brain.

Who cared if I got a traffic ticket? Who cared if I got lost going to someplace new? Who cared if I messed up a meal because I forgot a key ingredient? Who really cared if I didn't close the front door all the way? If my family didn't know where I was for a couple of hours, no one was concerned.

Who cares now? Everyone!

People accuse me of being paranoid, when in fact I'm only responding to the sting of puddles which are invisible or inconsequential to them. I can see the puddles, but they sometimes can't. I feel them, but they can't. For a while, I thought they saw them but simply would not acknowledge them.

What I have come to realize is that others can't be with me between my ears (only Mr. Spock can mind-meld), and so they are unaware of the new puddles I splash through hundreds of times a day. These puddles weren't there before the tsunami of forgetfulness cascaded through my brain, caused by the frequent quakes of Alzheimer's disease.

People continually tell me, "You don't look or sound like you have Alzheimer's. I see you as the same Richard I have always seen."

But don't you know? I didn't understand this, I misunderstood that. I couldn't remember this. I mistakenly did that. All of these "this or that's" are initially cognitive activities before they become observable behaviors.

Bright people, I am told, are better at unconsciously and consciously hiding the consequences of their Alzheimer's from others. Too bad for everyone I was once real bright.