Feb 11, 2016
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
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.
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.
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:
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?)
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."
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
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
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.