Chapter 1 Unpublished Book “Bits ‘n Pieces of Me: Memoirs to retain identity in the face of growing dementia”

Tru here.

2013-01/24

Decision time has arrived.  I knew this day was inevitable when my doctor gave the “dementia” diagnosis six months ago, at age 54.  It’s not like I don’t know what to expect because I saw this disease path first with Mom’s paternal grandmother, and then with her mother.  But … I thought I would have more time.

My coping skills are still good enough that most of the time I hide this illness well.  Even if I say the word “dementia”, people shrink back in horror but then chuckle and deny the possibility; “No; YOU definitely do not have dementia!”  But nevertheless …

Last year I lost the ability to understand the more complex stories on my bookshelf.  University and seminary textbooks were first to be set aside.  Then disaster hit.

 

Jan 24th was a hard day so I wanted to console myself with the cowboy stories that my great-grandmother introduced when I was in sixth grade.  I reached for one of the leatherette collector series by Louis L’Amour.  My husband bought this set of over 100 books for my birthday, and recently finished building the beautiful oak cabinet to house them.

The problem is that I cannot track what is being said in the book.  The author is describing location, but I cannot remember the start of the sentence long enough to get to the end of the sentence.  So I try to skip ahead to what I CAN understand.  After a dozen pages I give up on the book.

Sometimes this happens in conversations, and I have to just “play along” until the conversation gets to what I CAN understand.  Usually that will happen sooner or later.  With some people (like my Mom) I will stop the speaker and explain that I am just not getting what is said.  “Try to keep the sentences short, okay?”  Sometimes that works and sometimes it doesn’t.

… So I tried a different novel.  The same thing happened.  These are uncomplicated novels, listed at 6th grade reading level.  I can read the words, but cannot gather the single-word meanings into sentence concepts.  … And then I cried.

When I was in 6th grade my teacher, Mr. Fisher, visited our house.  I was in the “advanced” math group, and knew that I was doing well in school, so I was surprised that a teacher made a private visit to talk to my parents.  He was concerned that I seemed to live my life through books instead of getting out and experiencing life first-hand.  Now I am afraid this 55-year-old bookworm is running low on available books.

I told myself, “It must be time to go to bed.  Maybe it will be better tomorrow.  This was a hard day, and I am just too tired for my brain to hold the concepts.  Probably it will be better tomorrow.  Yes; … it will be better tomorrow.”

 

And Life Goes On:

… But it was no better the next day, or the next week, or the next month.  So now I need to make a decision; what am I going to do about it?  How can I prepare for the day when I look in the mirror and ask (like my Grandmother before me) “Who is this person?”  I need to compile bits and pieces of who I am, so that when that time comes, someone who loves me can read it to me.  I can listen to the names and events, and it will be a fresh new story each time I hear it.

… So this is the story of how I came to be who I am, and what has prepared me to live well after my Dementia diagnosis – in “Bits ‘n Pieces of Me”.  Most pieces were written by me, but some by other family members.  Some pieces were written a very long time ago, and some pieces very recently.

Welcome to my world.
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6 thoughts on “Chapter 1 Unpublished Book “Bits ‘n Pieces of Me: Memoirs to retain identity in the face of growing dementia”

  1. Dear, Truthful kindness, my mother has Alzheimer’s the most common form of dementia. She cared for my paternal grandmother who also had the disease, and it is now my biggest fear. Life is beyond cruel at times. I admire what you are doing so much and implore you to keep writing and sharing your story with others. I have thought about recording my mother’s story, but I am too emotional at the moment, maybe later. Best wishes, Jen.

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  2. Hello … this reminds what happened to my husband, a life long book lover. He remembered when he was a teenage boy and lived in Berlin/Germany for a year or two, Karl May’s novels were very appreciated to read secretely (teachers didn’t like them). Now we lived in Florida and I decided to get all the books he remembered from this writer, mostly not the cowboy but the Middle East stories and adventures. When these books arrived I soon realized Alex couldn’t read them anymore, because he had to start again and again. This was about one year after being diagnosed with dementia, probably of the Alzheimer’s type. I now looked out fort short stories. Alex was 73 and he never gave up reading, it was so much part of his identity, even if he didn’t understand, he just had to see books piled up around him. And his identity he never lost! In his latest stages of dementia Alex lost his ability to talk, so he turned to writing and drawing. To his last day on earth – at age 78 – we were connected and communicating. .I felt we were very close, and Alex guided me to let me know where he was going. . – Thank you for sharing your experiences,, thoughts and feelings! Tina

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    • Tina,
      I enjoyed your descriptive comment. I was especially encouraged to read that Alex was able to communicate longer thru his writing and art. Thank you so much for sharing such a wonderful connection 🙂
      — Truthful Loving Kindness

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