Tru here. That’s right; it is time for me to go ahead and PANIC !!
Yesterday started out great, with my first https://www.dementiamentors.org/ one-on-one video call (free). She and I had a lot in common and I didn’t feel guilty about taking more time talking about the complications in my own life, where I might have in the multi-person environment of the Memory Café.
Yesterday, after repeated attempts to understand what I had written the night before, I just broke down and sobbed … then sobbed some more with the cat’s condolences. Bereft of perception, bereft of voice and bereft of influence; that is what it feels like to realize that I have lost that much ability in 12 hours. Understanding what I read has been increasingly difficult but this is devastating. I will take some time to recover and lick my wounds, so you probably won’t hear from me for the next few days. Hoping to find some new work-arounds; in the past I’ve been pretty good at that.
… And now, when I look at what I have just written, it makes no sense to me either. I hope it is not gobble-dee-gook because I am not able to effectively edit it. What about finishing my book? I’ve only got a couple pages to add, but now … ??
Not earth-shaking, influential news, but it is a window into my world today. Welcome. 2014-07/25
MY NEW NORMAL
Tru here. Today is better than yesterday. As a dementia patient I knew the day would come, but yesterday was the first day that I couldn’t understand my paragraph, when I look back on it to make sure it is accurately reflecting my thoughts. The panic is not quite so disruptive; my upset stomach is settling down and I am not crying quite so continually. It IS what it is, and I will continue to write … so recognize, grieve, … and continue writing.
What if my portrayal is missing key factors, distorting the message I am trying to convey? Am I gliding from thought to thought or are there chasms between them? Am I mixing my tenses? I don’t know because I can understand a phrase, but that portion is gone by the time I attempt to understand the next portion of sentence or paragraph. …
YES!! ((jumping up and down in joy)) I said that I have been pretty good at coming up with work-arounds; I figured out my first one for my new normal. Read it aloud! Information coming in through more than one sensory channel is more likely to register. It is practically impossible for me to understand telephone conversations, but video conversations are a joy. In the same way, reading while also hearing the sentence is much more understandable. In order to better share this frustration, I will deny the urge to go back and revise the mixed tenses in my first paragraph. My new normal just became much more tolerable. 🙂
I took a deep breath and had turned away from my keyboard when the thought came through; “you know, this posting would be a lot better if I toss it with some of that new raspberry vinaigrette dressing … but how would I do that with words and retain the sentence structure?” Isn’t that funny; it must be time to eat but it wasn’t until my brain kicked in with a picture of alphabet letters tossed in the air that I realized how ridiculous the thought was! 2014-07/26
“Text Format” LINK >> https://truthfulkindness.com/2019/03/04/text-format-dementia/
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You are a beautiful writer,with lots of love. Please keep writing as long as you can.i can understand the fustraition.
Thank you, Tammy! I appreciate the comment and hope to keep writing 🙂 You keep on keeping on also; we are all in this together.
Fellow dementia blogger here (but from a caregiver’s perspective – and very frequently not always with a lot of love or kindness either, before you decide to visit…).
It is really refreshing to read your posts from the other point of view, and I look forward to reading more, in the hope that it can help me to understand what MIL might be thinking herself – of course she is a totally different person from you, so not intending to generalise, only to say that every little helps in getting the message out there!
DG, thanks for the encouragement and motivation. Also thank you for the warning, “before you decide to visit” LOL 😀 I have not been doing very well this week so will not attempt a visit right away, but will definitely visit soon. 🙂 — Truthful L Kindness
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Reblogged this on georgerook51.
Thank you George. I respect you and it means a lot that you would add it to your own blog.
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