Posted 11/15/23, a generally boring date, to be sure
“Be strong and take heart,
all you who hope in the Lord.” -Psalm 31:24
On 10/10/18 I began this little blog with the post found above in the top tab above labeled “Alzheimer’s, Mom & the Sweet 17” which has since come to be a subtitle for it. The subject of the post was the story of a weird little word: “vicissitude” and how it related to the day 10/10 and how things don’t always turn out exactly as you hope in life. While I have been a casual writer for about 25 years and my topics have ranged from Christian theology to being a lead editor for Radio Shack’s blog (RIP) to being a guest writer for The Bump, a website for and by pregnant women, I am not a wordsmith. I needed a word that was more full-bodied and profound than my typical 13-year-old-quality banter. I was experienced…I completed some 5000 content farm pieces as a side hustle before Uber, Doordash, and selling creepy foot pictures ever came along and before selling plasma was done by normal folks… but my hope for this blog was a bit different. It had a different, more profound sense of urgency than anything other than my Christian work. So, when I wrote the first piece, I needed something that lassoed my emotions at the time…perhaps a 85-cent word (sorry, inflation)?
See, I had the “deer in the headlights” look in October 2018 when it came to my mom’s dementia symptoms. I should have known better. I mean, my grandma, whom I loved dearly, had died with the disease. I had known others as well. However, life and the Lord takes us to and from where they choose and it had fell off the radar…until it came crashing back into our lives like an anti-Max Foley. So I based it on the word vicissitude.
Vocabulary.com explains this word thusly: “Losing a pet, crashing the car, being called in for jury duty: these are examples of vicissitudes — chapters in one’s life that one would rather avoid but must get through. Some lives have more vicissitudes than others, to be sure, but no life is without events that test and challenge us.”
This was and is a caregiver blog/resource more than a description of the terribleness of dementia, although there is plenty of room for that. As any good writer or theological eisegete would do, I found the definition that worked better for what I had in mind and settled on the Cambridge definition “changes that happen at different times during the life or development of someone or something, especially those that result in conditions being worse:” I shoehorned it in, as I mention early and often here.
Dementia, for the one suffering, was not in view because I really didn’t understand it yet. Looking back, it probably explained my state of mind pretty well. I was scrambling because mom was starting to be symptomatic and I didn’t understand what that even looked like. Making the disease tantamount to “Losing a pet, crashing the car, being called in for jury duty” was not only the understatement of the century, but was so me-centered that it is silly looking back on it now. However, I am very comfortable leaving it there because that was where I was and it reminds everyone who read this blog that I have not always been a dementia care specialist…I was once a fellow deer in the headlights.
Why do I bring this up? I mean, wouldn’t 10/10/23 have been a better date, on the 5-year anniversary of the blog? Yes, it would have. The day came and went without fanfare, as most days do these days some 14 years since mom’s diagnosis. This set of pictures starts the story of why today:
I spent yesterday doing two things:
- 6 hours of clinical study research at Washington University (as a guinea pig…are you kidding me, I was only beat out by about 55 people in my class of 150 for Valedictorian). They did a long MRI on me and then did non-surgical deep brain stimulation work (see above) to compare and contrast several things in the two procedures. Also involved were a bunch of concentration things, cognitive work, and even showed me a short clip of the Clint Eastwood classic The Good, The Bad, and The Ugly both in the MRI and with the stimulator on. The movie is apparently used because it has enough documentation in research for comparison and it seems to direct your eyes and your thoughts a lot due to impressive camera work. It was a GREAT EXPERIENCE and hopefully I was able to help. While the therapy I was hooked to above is primarily for helping with Parkinson’s disease (Parkinson’s dementia is under the Dementia umbrella of conditions), it is great for brain research as a whole. If you are curious, it does feel a little weird. I could feel my heartbeat in my hair… BY the way, everyone there was WONDERFUL, as always! They are kind, appreciative, and very brainy. 🙂
- Meeting with our Longest Day committee on site in St. Louis. Here is my page for this year’s shark jumping good time: https://www.facebook.com/donate/826636592483072/ We met to discuss the fundraiser needs and how to get the word out for the Longest Day events. Everyone can participate and raise money in these micro-level events. Bake some cookies, start a lemonade stand, jog 100 miles, whatever works to get the word out and raise some coin. The Alzheimer’s Association surpassed $100 million spent in research projects in 2023 alone. They do not waste money. They rely on volunteers extensively so that more of the donations could go toward caregiving programs and research, two HUGE needs! I am happy to help them.
One of the most amazing things that happened, and the reason I shared this post as I did, is during the cognitive testing portion of the fun in yesterday’s research, they did a test I had never endured…and that says a lot since I have had at least 30 cognitive tests in various research projects. They showed me an iPad that had me just read some very long and confusing words. You know, the ones that make you Scrabble super point rich. They just wanted to see if I could look at the whole word and sound it out in a thoughtful and clear way. The words were similar to choledocholithiasis. Can you look at it and say it without breaking it into parts slowly? That was what was being measured. After 3 samples (that were markedly easier) the FIRST ONE ON THE SCREEN: vicissitude
I just chuckled and said matter-of-factly ” You…I know that one.” and read it.
Amazing. Is such an event a coincidence or is it encouragement from God? Are there even coincidences in life? Of all the words the iPad could have pulled from Steve Jobs’ shiny box via a super brainy researcher, that was chosen.
I am not sure what to do with it other than to redouble my efforts to help people NOT be Deer in the Headlights. Education, fundraising, support groups, etc… That is in my future as much as in my past, and this encouragement was just what I needed. Thank you Lord. It was a very serendipitous time for it. 😉 And, who knows…maybe next study will ask me to pronounce that one. 😉
#EndALZ
Update: Mom is doing pretty well, all things considered. Here is a Facebook post from a few days ago that detailed a special visit:
“We sang some of the old hymns (Old Rugged Cross, In the Garden, etc ..) at lunch today in the nursing home. Several of the wonderful folks, many of whom can barely string a few words together, sang the very best they could, with their full heart behind it, in praise of King Jesus. To the outside observer, it was not exactly classically melodious… but to Christ I am convinced they sounded like a room of the best on Earth. I just wonder which sounds more like heaven: talented, trained, on-pitch performers, or those who sounded harsh and crackled like they did, but with a sense of urgency and a deep love of Christ and a longing for the face-to-face audience of Christ some day soon? I was just happy to hear them. 
Mom gave me a sweet, crooked smile too… The first in weeks. It was a great visit. SDG #ENDALZ”
She could decline quickly soon, but the lest few weeks have been pretty darn good.
I have several ideas for my Longest Day event. I would like to not end up assuming room temperature, but I am open to suggestions. 🙂 I have some stuff in the works. Stay tuned and donate in anticipation. 😉
I’m so sorry your mom has had such a long journey to endure. My mom is 94 and has dementia and is losing weight rapidly. It’s truly heartbreaking all around.
I am very sorry Ms. Miller. 🙁 Heartbreaking indeed 🙁