Decision time has arrived. I knew this day was inevitable when my doctor gave the “probable 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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