Alzheimer's from the Inside Out Book

Amazing book. Richard Taylor, who died of cancer in July 2015, had a special ability to communicate even with the devastation of dementia. This book was helpful to my thought processes not only to learn about the awful disorders of dementia, but to help clarify some of my thoughts regarding who we are. Who am I? Am I who I was at earlier ages? Will I be truly myself - the culmination of my entire life only at the moment I die? (That's my current thought - that everything I do in life leads me to myself, and my real self is who I am NOW.) But what if I have dementia? Is this current self then, this Dementia Self, not my REAL self? Or is it my REAL Self, just changed? (I suspect that there are then two of me - the Me Before Dementia, and the Me After Dementia.) I hope I NEVER get dementia. I hate everything about it from my personal observations and from my readings. Not only do I hate it, I HATE it with all of my heart.

Dr. Taylor's amazing ability to communicate even in his ten-plus years of dementia, was nothing short of remarkable. He was a strong advocate for better care for people with dementia NOW. He especially disliked being treated as a child, or as a less than human person. He wanted choices and a say in his care. How could anyone blame him for that? He wrote poignantly and clearly and convinced me of almost everything he wrote.

Almost...because I then read interviews which included his wife. Then I realized that Alzheimer's had affected his brain more than he could realize. He wanted more control over his life, but that would not have worked because his dementia was worse than he could have realized. Yes, he retained his words and his ability to communicate (though by his own admission, what once took him ten minutes to write now took ten hours and dictation software made the corrections he could not have). His wife indicated that dementia had made him selfish and wanting everything now. Doesn't that sound like a child? How can you treat someone, including an adult, as an adult (capable of living independently) when they're NOT?

Here are some of my favorite parts of the book:

page 54: "How does someone who has already exhibited the signs of plaque in his brain figure out what is going on between his ears? How do I understand understanding?...Trying to "figure out" Alzheimer's when you have Alzheimer's is like trying to figure out how to build the space shuttle from a set of plans written in 10 different languages which were dropped on the way over and just randomly reassembled...Some of my logic circuits are now misconnected. Some of them are just plain disconnected...We have some ideas. We have some tests. We have some medications...We know lots more about Alzherimer's than did Dr. Alzheimer, yet we still do not know what causes it."

page 60: "I must do more than simply wear a T-shirt that says, "Beware of occasional eruptions of my fears of volcanic proportions." I am frustrated with people who continually tell me, "Well, that's the way I am. My mother was that way, her mom was that way, and I act that way." It's as if their historical account of how generations of family members have acted inappropriately was justification for them carrying on the family's traditions. If lots of people with Alzheimer's becaome defensive, does that make it okay for me? Does the explanation of inappropriate behavior serve as an excuse for it? I think not. I am still just as responsible for myself whether my mom suffered from manic depression or lived a Mother Teresa life."

page 65: "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 in the ass. He would confuse my thought processes from time to time. I couldn't figure things out the way I had prior to meeting him. Now, he is a constant companion. Every day, every hour, every few minutes. I lose my train of thought. Not only do I lose it, I can't recall the name of the train, where I was going, or why I wanted to go there."

page 84: "VERB: Function: noun (Isn't it ironic, confusing, and interesting that the word verb is a noun?)

page 121: "To this day, well-intended friends and family still say to me, "You sure don't seem like you have Alzheimer's disease to me." They say and mean this, I believe, as a positive observation and comment, "you act normal, just like me!" I don't know what to say...The longer I live with this disease, the briefer the periods of time I feel "normal." Previously, I could easily lapse back into my prediagnosis ways of feeling and thinking. Now, my thinking almost continually reminds me that I am not normal." ... You won't see a picture of me in this book putting on my shirt inside out. It happens many times a week. You won't hear me fishing for a word, because I have time to pause when writing. It happens, many times per day."

page 137: "My caregivers seem to spend a great deal of time talking to each other about how I have changed."

page 146-7: "Unfortunately, awareness of the changes in how we understand and communicate with each other is more and more in my caregivers' minds, not in mine...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...I can believe this. The fact is, it is not true, or at least it is not as true as it was in the past. As I move from errors in judgment that I can understand with the benefit of hindsight to errors in judgment that even with the benefit of hindsight I cannot understand, so moves my ability to be a partner in this process that I have previously overdescribed! 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."

page 148: "As the weave of the lace curtain becomes thicker, as the wind blows away even the most recent of memories, people do not have time to explain to me time and again the things that I don't understand. They tire of telling me the same things over and over. They cannot depend on me to remember the simplest of instructions...The trust relationship...is breaking-not because we do not love each other as much...At the same time, this stronger family connection is strained to the point of breaking by the symptoms of Alzheimer's disease...I forget that I forget...I base conclusions on incomplete and/or inaccurate memories...Please understand, I am still here."

page 150: "It will be impossible for me to announce just when my condition has reached the point where I am unable to be a rational and equal participant in conversations about me, my behavior, and how best I should be managed for my own good and to lessen the fears of others. My family acts as if the point has come and gone, but I feel and think as if it has not yet arrived. Perhaps there is no clear line of transition from taking care of myself to being taken care of by others, but as that time approaches, I would still like to feel a part of what is going on."

"Thou, yours truly, has started to become an It. Of necessity, my caregivers would argue, but nonetheless an It. The same words are used to represent me - Richard, Dad, Grandpa, my husband - but what follows does not refer to who I think and feel I am. My behavior is treated as something apart from me. "It's not him, it's the disease." Unfortunately, I am both, and to the extent the disease has altered my behavior and thinking, it has altered who I am. I am no longer who I formerly was. I am no longer like everyone, but there is still a good deal of me left. Am I half empty or half full? ... My heart aches and I want to shout: "I'm a different Thou, not a quarter It and three quarters Thou."

page 166: "It is very difficult to live in a situation where my five-year old granddaughter honestly believes I am one of the smartest people in the world because I am a former teacher...On the other hand, the adults seldom ask me any questions and never ask me to help them...When I do offer unsolicited advice, they are most likely to respond with a disinterested "Thanks, but I'll take care of it myself." ... I have not forgotten 62 years of my life experience. I went to school for almost 20 years of my life. (I now know it was way, way too long to spend worrying about how to read and write, add and subtract, and do unto others as I would have others do unto me - by hey, I didn't make the rules for granting degrees. Someone should come up with a child's edition of ...7 Habits of Highly Effective... and after children have memorized them they should be free to quit school whenever they feel bored, and return to school whenever they feel bored.)"

page 177: "The need for my caregivers to feel connected to the "old" me rather than the "now" me is understandable, even long after I have lost the need to reciprocate. However, I must say this: 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. Of course, if I do not know what is going on around me, why should I care what you are doing to me or with me? That is a good question, and probably speaks to my own needs to try to control what is happening to me long after I have lost the interest or ability to do so. This stuff is not easy to figure out before it happens, you know."

page 212-13: "And don't worry about bringing any money; we will pay all your expenses...." "Well, what about my desire to give you some money for food?..." "Don't worry, we will take complete care of you!" ... I know...they strongly believe they are doing what is best for me...They either don't understand what I am saying or asking for, or they believe they know what is best for me despite my protestations, or they are so overwhelmed by their own fears, stress, diversions, or lives that they cannot or will not consider any concerns other than their own. Or, perhaps, it is a combination of these. Or, perhaps it is some factor to which I am blind." Note from me: Yes, it is some factor to which you are blind. It is your dementia causing you to believe you are still able to be in control. "When will they do it so it will benefit all, especially me?" As his wife said in an interview, dementia had made him selfish and wanting his way now.