From – Alzheimer's from the Inside Out – Health Professions Press, 2007
By Richard Taylor, Ph.D.

I race up and down the corridors of my mind, frantically seeking to make sense of what's going on around me. Sometimes this process makes me even more lost, and I become lost about why I am lost!

It is amazing to me to ponder the possibility of missing the ultimate unique moment of my life, my death, because I have no words to describe it, or understand it, or appreciate it.

Perhaps too much time is spent trying to answer and question each other, when what I really need is to feel like I am being heard. I know you don't have all the answers. You also don't have all the questions!

"Don't worry if you don't know all the answers," says the examiner.
"Which ones is it okay for me to not know?" ask I.

How can I do this "right" in the morning and "wrong" in the afternoon? Why do I recall details no one else remembers and forget major points everyone knows?

I believe Alzheimer's has replaced cancer as the most feared disease people can imagine.

I was afraid of Act Two because I heard I would be required to drift in and out, back and forth, from my old self to my new self.

I'm sure there is humor in my life, even now. I am sure there is unique meaning and purpose in my life, especially now.

We try, in our own ways, to communicate. Honor us for trying.

Every year, we ask physicians to check out our heart, our liver, our prostate and/or our breasts, and our eyes; but we almost universally neglect to check our brains.

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.

I have learned to recognize the difference between sympathy and empathy, and I have learned how to accept both of them.

When I said I would do something, I did it. When I thought I understood a problem, I solved it. I was a leader who was consistent, straightforward, and dependable.... I still remain straightforward, but who I am and how I am thinking keeps changing, sometimes from day to day or hour to hour.

The fact that I know I have Alzheimer's disease motivates my focus on actively making today better than yesterday, not hoping tomorrow will be better than today.

Right now I am more concerned with the transition, the process, the journey, from being of two minds to being of one diseased mind.

In many cases, it is physically impossible for an individual with Alzheimer's disease to use logic and evidence as the basis for attacking and overcoming irrational beliefs.

I'm not talking about polysyllabic words. I'm looking for my granddaughter's name.

It isn't that I can't read. I understand words, and grammar, and how to read. I know how to read! I just can't.

Singing something, anything, from children's songs to hymns, from the Hallelujah Chorus from Handel's Messiah (I can still recall the first note for tenors) to any and all Beatles songs, helps me feel that I am feeling okay and, in fact, good.

We think we can control our fear of the territory by controlling the saying of the word. If I do not say I am pregnant, does that mean I am not pregnant?

I have no idea who I will be when I am wheeled out for the final act on the Alzheimer's stage. But, I do know I will be...I will still be me...perhaps a me different from what I have ever been before.

I now have lists of lists. They are color coded and different sizes; some stick up by themselves, and others have holes punched in them for hanging.

Of course I realize that normal is a relative term, but I try harder and harder every day to outwardly appear normal.

One day, I did accompany someone to the store, and it felt wonderful to be able to walk up and down the aisles and buy things based on impulse.

I, like most human beings, am very good at hiding my thoughts but not so good at hiding my feelings. So in spite of what your neuropsychological testing may tell you, the first outward sign of the disease is probably revealed through your feelings.

I want psychologists to open their own minds beyond what they learned in graduate school and attempt to see me not through the eyes of someone who died years ago, but as someone who is marching not only to a different drummer but down a different road than most all their other clients.

I have a large vocabulary, a loud voice, and a Ph.D.—a great combination if one is trying to hide one's early-onset Alzheimer's disease.

I feel that people would rather disable me than enable me to be all that I can be. I feel lonely. I feel less attached to my family. Is it me or is it them?

The trust relationship between husband and wife, father and son, grandfather and grandchild is breaking—not because we do not love each other as much as in the past; in fact, now our love and our connection is even more then it used to be.

I don't know why it embarrasses me when others act differently around me. I'm the one with the extra dead brain cells.

Please accentuate the positive with my recollections. Don't lie if I'm not accurate, but don't try to make me remember exactly like you do.

Would a dictionary resolve our misunderstandings? Would a tape recorder resolve our lack of clear communication? No!

Many times, she must guess when I need help and when I don't. Asking for help does not come easy for me. If she guesses wrong, I am not pleased. If she guesses right, I sometimes take it for granted.

Obviously, there are no "right answers" and no "right ways." Most families, like ours, keep trying until we get it right and hope we have not alienated each other in the process.

My relationship with my spouse, my family, and my friends has broadened and in some ways deepened. We spend more time really being together. We talk more, we hug more, we cry more, we laugh more and harder and longer together.

Is it my own vanity or shame, or fear or low self-esteem that keeps me from asking for prompts or help?

I hope you would honor in the same way my need for dignity when I cannot respond to you as when I could. Please treat me first as a human being, and then as the loving person I once was.

"And, oh, by the way, stop feeling so paranoid; everyone is not out to get you."

When I was first diagnosed with the disease, every time I got out of bed my spouse would inquire, "Where are you going?" I would tell her that I was going to wander naked around the neighborhood. We would both laugh, and she would fall back asleep.

I am not a child. Even if sometimes I act like one, check me out—I AM NOT A CHILD!

I am really not sure that if I did not have Alzheimer's, I still wouldn't have reacted the same way, but that is an issue for my therapist, pastor, and God to deal with.

I vaguely recall a time when lots of people were coming to me and asking for information and my opinion concerning things other than myself or my disease.

I am fundamentally different from you. Different in ways I can't express and you can't fully perceive or understand. Our brains are different.

Treat us as someone you love as we are, not who you wish we were or who you want and think we should be.

And what about my need and desire to maintain some of my own independence and feel and act like I am an almost completely functioning adult?

I usually believe I am still Mr. Fair, Mr. Reasonable, and Mr. Open-minded. The fact is that I am less entitled to these characterizations.

The changes come more slowly than I thought. It is an erratic process, with one step forward, one step to the side, two steps backward, and a hop, skip, and a jump.

I am more confident, and comfortable with who I believe I am, since I started writing.