JOAN’S WEEKEND BLOG – SEPTEMBER 27/28, 2008 –UNDERSTANDING THE WORLD IN WHICH OUR AD SPOUSE LIVES

My most defining moments of understanding of the workings and emotions of the AD mind have come when I have been able to step inside my husband’s world for a few minutes. When I have been able to see the world through his eyes, I have actually felt the fear, confusion, and anger that he and others with AD live with every day. ( Blog #8 and #177).

I believe the more we understand how our spouses view their surroundings and how they feel about our reactions to them, the easier time we will have coping with their declining abilities and irrational behaviors. Perhaps it will help us smooth the way for them.

No one has been able to give us a better view of what it is like to have Alzheimer’s Disease than Richard Taylor, Ph.d. For those of you not familiar with Dr. Taylor – he is a psychologist who has been living with AD for about 7 years, wrote a book (Alzheimer’s From the Inside Out)  about his experiences, and still lectures and tirelessly advocates for those with AD.

I have read his book, seen him lecture, and follow his articles. The difference in his self-awareness and writings in his book from about 3 years ago, to his current articles starkly demonstrates his decline.

I am printing Dr. Taylor’s most recent article. I think it is truly one of the clearest examples of the “inside” of Alzheimer confusion. If you could step inside of your spouse’s brain, and “feel” what they feel, I believe this would be it. Sid was with me when we heard Dr. Taylor speak, and he said that every word Dr. Taylor spoke was what Sid felt, but was unable to verbalize.

©Copyright 2008 Joan Gershman

Sticking out like a sore thumb

Hello!
 
Definition of "sticking out like a sore thumb":

verb - (idiom) - Be very noticeably different, especially in a negative way; to be particularly obtrusive, conspicuous, blatant, or prominent; to attract undue attention or notice.
 
So there I was, reading my own words, words I had written no more than three days ago. I was in the final recording session for my first DVD. Suddenly I paused in mid sentence and announced to the camera crew (sound person, camera person, and TelePrompTer person), two friends (my producer and director), and my assistant: "I've done this before. Why am I repeating it again?"
 
Kindly, several of them reminded me this was similar to what I had just done, but not the same (Most of the vignettes on the DVD begin with sort of the same general introduction). "Oh," said I, trying to cover up the fact I didn't know what was going on, what they were referring to, and still pretty sure I had read this before.
 
After several minutes of talking about what had and was happening, it was clear to everyone, except myself ,that I was confused and really didn't know what I had read, hadn't read, or was reading. I was sort of wandering, but I was seated!
 
Finally, and suddenly I figured it out. I knew what had happened and what was happening.
 
Okay, we all came back to the same page, the same line on the TelePrompTer. Onward to the next line.
 
I read a few more lines and then I came to one that just didn't make sense to me. It was my own writing and I couldn't understand what the hell I was trying to say.
 
Again, kindly, several of the crew explained to me what the sentence meant, and was I aware that I kept leaving out a couple of key words as I read it off the prompter. "Nope!" I finally admitted.
 
 I read it again, and "Yep" I passed over the words again. Finally, and kindly, someone came and sat beside me and read it aloud with me, and BINGO I saw, and heard, and read, and understood the words and the sentence.
 
I looked around the room and there were tears (small ones) in the corners of everyone's eyes. Suddenly I figured out what was happening. Suddenly there were tears (big ones) in my eyes, and a few were even running down my cheeks! I was lost, bewildered, confused, wasn't in their moment, I was in my moment - and while we were all in the same moment of time, there was a different moment between my ears, than the moment between their ears.
 
That's what is happening to me in different situations: I'm in my own moment, all by myself, and I don't know it. When others try to bring me into their understanding of the moment, my first reaction is to cover up my wandering. Even when I don't understand what they are trying to tell me, I agree with them, and go back to trying to figure it out by myself. Why don't I appreciate the fact I have dementia, probably of the Alzheimer's type?
 
For the rest of the High-Def DVD recording session I would occasionally lapse into my own moments, moments different from the others' understanding of the same moment.
 
WOW!

Richard

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