This blog is about Lewy Body Dementia from the perspective of two fellows that have it. Think: Beavis and Butthead on dementia.
Serving up the snarky side of dementia since 2018
Just when you thought you were off the hook for responsibilities....
Caveat Viewer: I apologise as the picture would seem to have nothing to do with the article below. I used it because I could not find *any* picture that really starts this conversation...moreover, the conversation is potentially a downer and the picture is absolutely not that. The White Widow and Black Diesel were recent crops from my garden and I discovered where the WW has lots of taste and zing, it also was a tad harsh...and the BD is heavier in CBD and way smoother, had a better cure by far but made little taste-statement of its own. Used the Grindarolla to do up 6 blended J's for the day. Very nice, very smooth, very medicinal and has shit-all to do with the story.
I return you to your expected televised programme...this is a message and maybe a hint to other patients...read to the end.
Greetings, Jeff here to try and start a conversation about something important to every single one of us....even if we are not aware yet. As the patient, your brain is broken and as-such, the responsibilities are on-par with what you would give the average 12 year-old....with suspected brain-damage.
I am serious; you get used to being responsible for nothing more than taking garbage out once a week and cooking the occasional meal without needing to call the fire department. I am not faulting this situation; in fact I am reasonably sure the lower stress will let the patient live longer...or at least live longer in the MCI stage.
Since you know you will not be in some Flowers for Algernon situation and suddenly have all of your marbles re-installed, you logically deduce your responsibility-load will only decrease over time. It is not an un-warranted assumption. Hell, its what I thought....until this week. Man, how wrong I was; in fact I realized at this moment I carried far more on my demented-assed shoulders than I did 5 years ago as the sole bread-winner of the house.
The thing is, when I found out what it was, and how....vital it was, I was surprised like I have not been in a very long time. As I said, I am writing this story for and directly-to other patients:
Dudes, Dudettes and other dwellers of the Dementia Zone, if you already know about this, cool on you, you are ahead of the pack. If not, trust Jeff when he tells you, you want to learn about this from me first.
Here is how it happened with me. My wife and I have always lead a "fun" life, just doing what felt good li ke bailing on work to go watch the dolphins at the beach, as low-stress as was manageable. Now is so our days in my MCI stage are consumed with simple hobbies, watching everything from old TV and cartoons to movies and anime to playing video games together, eating when we like, sleeping when we like. Things are almost always in an up mood....and I just assumed thats because thats just how things are....nope.
I have never given it much thought and certainly no planning but its just been part of my personality to find the upside to stuff when none is visible, finding out of the box solutions to things, and that includes attitudes. IOW I have tried to find the ....if not "sunny-side", perhaps the "crazy from too much sun" side of this...there are only so-many ways you can shine up this turd though and sometimes in a moment of frustration, well, frustration at my situation comes through. Cooking breakfast the other day was no exception.
It was a common Jimmy Dean Skillet affairs, this one was Southern Grease Flavor, I think thats what it said. Anyhow, its never the dropped utensil or spoiled recipe or the broken dish or the burns to the arm that sets you off. If in fact thats all that happened, I still have enough going on to roll with that like an adult.
No, its when the act of stirring the sizzling skillet results in an arm-twitch that shoots equally-sizzling projectiles across the stove where they nestle with other nuggets in the flame of the adjoining burner, starting a new fire in a place the stove manufacturer never intended.
Of course, you have little knowledge of this happening beyond the initial airborne meal components of a second ago; the reason is simple. In your comically-delayed lunge to catch the food, you run your arm along the edge of the pan. The hot edge. Along the tender under-skin of the fore-arm.
Now at this moment you have one fire going from the first spill, the original skillet frying on another burner and your arm in the middle of it all. And since your frontal cortex is as reliable as a Yugo, all your brain "sees" is the sharp and unexpected pain in the arm, so self-preservation kicks in and you go cave-man, jerking your hand back from the fire with something between a manly grunt and a fairly girly squeal.
This would seem dramatic enough but kids, one thing about life in The Dementia Zone is that it is never, EVER boring and what that sometimes means is, everything is either dramatic or over-dramatic, no room in between or below. As if the universe or fate or whatever needed to prove a f-ing point, in jerking the arm out of the painful pain results in the spatula snagging the pan edge and yep.....dragging it all off the stove onto the floor.
So it was it this moment I made the great leap of judgement that some 4-star cursing was called for in such a situation. I summoned 5 decades of cussing practice that I learned in the US Army, where cussing is more of a Jedi-skill, often imitated but never repeated. And it had been a long week, leading to this morning when I had the temerity to attempt to cook a meal I have made in various forms for most of those 5 decades. So I let it loose and after about 5 solid minutes of the most colorful yet demented commentary you could hope for, I started to feel better. And thats when it all went wrong.
I went into the other room and my usually pillar-of-granite wife/caregiver who is going along with me on this ride was nearly in tears....I asked why (I mean, I had the fresh burns on my arms....) and she said:
Jeff, sometimes when I am out with my friends, they ask me how I am holding up with all thats going on with you, and I tell them when I begin to feel down, I see how you are always trying to find the fun or jokey-side of this, not falling apart like some....and like she could if my attitude were not the smart-ass one that it is....
This sat me waaaay the fuck down kids....I had not thought anyone depended on me for anything, let alone my wife, caregiver and house-hold manager and everything. When she is up, everything else runs smooth as silk, better than when I had my hands in on it...but I never gave any thought or effort really to trying to prop up everyone elses moods. I don't think it was selfishness, or I would not give a shit now. I just...didn't think of it. Hey I have dementia so shoot me.
Now let me ask you patients one last question: as you have lost your mind and lost your responsibility, how many nights have your laid awake wishing for a real way to help your family or just those around you even. I mean something tangible, something real, something that makes a difference. Well guess what: this is it. And do you know what? If you had told me back in St. Monicas School for Wayward Smartasses, circa 5th grade that being a smart-ass might save my life one day......
And now do you see why you wanted to learn this from me and just "seem to know it" in your situation, doing the right thing out of instinct, real or imagined? Now that I know what does depend on me, i know I will never let this get the better of me again.
As for the disaster in the kitchen? Well, perhaps the medicine picture isn't that far off after all, am I right?
PS: I tried so hard to make this make sense, because it turns out to be so important but I fear I may not have.