Sharla Cooper:
26 May 1955 – 22 July 2023
This past 22 July 2023, my spouse, my wife, my best friend, and my partner, passed away. Sharla Summers Cooper was a victim of Lewy Body Dementia. LBD is an ugly disease for which there is no cure. Second only to Alzheimer’s disease, as of this writing, LBD affects approximately 1.3 million individuals and their families.
Although LBD is relatively common as far as dementia patients are concerned, it is terribly misunderstood by the rank-and-file physicians and caretakers. For now, for the sake of brevity, I’ll say the most persistent symptom affecting Sharla, causing an inordinate amount of confusion amongst her family and caregivers was the sudden and momentary loss of certain abilities and memories.
Examples:
Following are a few examples. I’ll add more as time goes on. In the meantime, you can find more information at the Lewy Body Dementia Association’s web site at www.LBDA.org.
- On a given morning Sharla would have no issues brushing her teeth. Later that evening, she wouldn’t remember how to open the toothpaste tube, or squeeze the tube to put toothpaste on her toothbrush.
- Another day she might be eating her meal and then suddenly forget how to raise her fork to her mouth. – She would stab the item and then look at me and ask, “What do I do next?”
Today is Sunday, March 10, 2024. It’s also the first day of Daylight Savings Time and, while setting my various clocks forward, I relived some of the issues Sharla experienced with time and dates:
- Reading and comprehending time became difficult for her in the last year of her life. Making it more difficult for both of us was that she couldn’t adequately describe the problem(s) she was experiencing. She would look at a clock and tell me she couldn’t read it. So we tried several different options to help her. — I purchased larger clocks with larger numbers. I purchased clocks with lots of contrast between the background and the letters. I purchased clocks with different fonts for the letters. We tried roman numerals. — FINALLY, we, both her and I, realized that it wasn’t that she couldn’t read the individual numbers but that she couldn’t comprehend what they meant.
- Well, there were also times when she couldn’t actually read the numbers because it seemed to her that the numbers bled into the clock face and didn’t stand out at all.
- Calendars, dates, and events became very confusing for her. During the last several months of her life I created weekly, day-by-day, listing of her various Dr., PT, OT, appointments. (This was to help her as well as her care takers.) Then each evening, as part of her bed-time ritual, we would spend several minutes reviewing what the following day would be and that day’s events. At times this became quite frustrating for both of us as often she just couldn’t get it.
- Comprehending other people’s speech became difficult for her as well. I had to constantly remind one of her Physical Therapist to Slow down! Talk slower. Give Sharla a chance digest what was being said.
- Following the nightly task of reviewing the next day’s activities, I would read the daily devotional from The Upper Room. I learned that I had to speak very deliberately and slowly or she just couldn’t get it. — And she let me know it! 🙂 (Side note: As part of “the process”, I still review today’s experiences and tomorrow’s events and read the next day’s devotional to her. I’m certain she is still listening.)
