Multi-infarct dementia – A term that will never ever leave my functioning cerebral cortex. It took residence there for good on my birthday last year when it officially took up residence in my mom, inflicting a soul crushing, dignity beating afflication on my mom from which she is never going to recover. I didn’t know about ischemia related concerns and TIA related episodes or even the concept of ministrokes. All of which are now permanently fixed in my lexicon.
There are regular episodes where something temporarily goes cataclysmically wrong, and then, most comes back. What gets lost in the translation is never immediately obvious. It’s a harsh reminder of the vicious cruelty of the disease as for my birthday this year, mom experienced another episode that temporarily stole her ability to do any body control.
I mean, I’m grateful to the gods that my dad is still around and healthy, largely and that I’m into my mid 50s, so I’ve had my mom there a lot longer than many folks I care about so I’m not getting cheated, but the way she is getting taken is flat out cruel. For somebody who never put herself first, that is just a horrible abomination.
I believe I’ve heard her laugh 3 times in the past 18 months. The disease is cruel that way taking dynamic souls rendering them into near mannequinness. Thorough the experience of the past 18 months, I was able to keep a cool head when it became obvious that she didn’t have the ability to participate at all in getting bundled up in coat and scarf to return across the street to her long term care facility where thankfully the right nurse was working.
It’s a far cry from days of yore. My parents sold their house after 51 years at the start of this odyssey. A year or two prior, I remember going out to visit and my mom and I were having coffee. The night before they had journeyed to a party for the Flow Cyctrometry lab at Roswell Park and she was telling me a little bit about the experience.
“Michael, one by one, these little nerds kept coming up to me and telling me that your father is a “fucking genius.” Hearing her f-bomb made us both laugh a little. It’s not really news to hear that my dad was the smartest kid in class, but I hope my mom wasn’t and isn’t selling herself short.
As an exercise, character building or not, she dispatched me to sell some raffle tickets for the Clarence, New York Democratic Party. The very likelihood that the area Democratic population was the contents of our house was a secondary concern. My best Friend’s dad bought a punch with the proviso that his name did NOT go on the tickets. My little brother never knew how close he came in his first 50/50.
In the MC Esher building block that was the family house. My room was on the upper level of the second floor and my mom’s sewing machine and desk area was in the adjoining room. The reason this matters was I discovered my music about the time the red and blue Beatles greatest hits records came out and dutifully got copies. A few years later, two more collections came out, Love Songs and Rock and Roll music. I dutifully wanted a copy of Rock and Roll Music. As girls were just starting to be a concern that I was just starting to do badly with, I was more concerned at the time with Rock and Roll. When Christmas rolled around, a copy of Love Songs was waiting. Mom was counter programming me. I learned to love em, even the mushy numbers,
That, there is a flipping genius.
A disease that attacks in such a way doesn’t play. Mom managed the family she was born into, built a home for the one she married into, and spent her life keep us all safe. Health care Karma doesn’t matter. It doesn’t matter the thousands of nights she kept us all safe, the wrongs she tried to right, the world she dared to be better. She’s getting punished. I’m not exactly sure for what. When the ministrokes come, they subside, but you can’t help but wonder what won’t come back, as if to say, just in case the trauma wasn’t enough, here’s something you can’t do anymore, or a phrase that won’t come easy.
That’s what is unfair. I don’t know if the instrument exists that can accurately measure my levels of emotional exhaustion and depression, but those things take a back seat, when you are literally holding your parent up. When the nights they’ve protected you are in the thousands, you keep fighting