Skip to main content

For the first time I am frightened...





Greetings kids, Jeff here.

I have written in the past about the fact that I have a terminal disease and yet I do not fear death. Its not that I am brave or special or anything like that. I can't fully explain why, but within a week of learning I had a terminal disease and had a more or less drop dead date, I found I didn't fear that date or the dying part. To me its just a date, just a thing. My wife is emotionally more impacted by this than I am.

At first I just figured I was weird, I have been my whole life and am at peace with the fact. But then the day came when I met Randy for the first time (well, online so ...you know). Randy who is the other contributor here also has Lewy Body Dementia and is roughly at my stage of progression. In some ways he is ahead (walking) and in some I am (confusion) but we are close enough where it made sharing notes an obvious first step, and I was surprised at how many things he described that I thought I was the only one. One of those ways we overlap is any personal concerns about death.  To Randy death is just another date, not something he sits up nights thinking about.

I also feel lucky because I don't feel I have left much unexplored that I want to; I have lived a full-enough life that if it ended tomorrow, I would have no regrets of things left undone. I lived alot of life and would change absolutely none of it because each step was a step to this place I sit now, which is good, aside from the terminal disease and all.

Lately however I find that I have had the most unnerving sense of dread, one that is starting to consume sleep and make day-time decision making an exercise in futility. I realized it was the engineer in me because I asked myself: what was different about the thing I am afraid of (from now until I die) and the thing I am not (death)? The answer is I know far more about how my end will come than I do about the intervening window of time, from now until then. Oh I can guess at some major progression aspects but thats just a guess and not worth a fart in a high wind.

I can't even guess at what will come for me in the next few years; statistically I am not far from exiting the MCI stage and where there might be 10 people really explaining the MCI stage, no one is explaining what comes after...and I figured my fear was the oldest one known to man: fear the unknown. I fear that time for a couple of reasons:

1. This period is what will test my caregiver to her utmost limits.

2. Not knowing that time period at all means that I cannot plan for it either.

So I think this feeling of trepidation I feel is for that time, to know how it will turn out. If I can't prepare, I truly fear the consequences.


My Memory

Right now my memory is very much like a block of Swiss cheese in that the holes represent holes in my memory, and the twisted path they take through the cheese illustrates my memory loss works: some things I am stuck at the first step and others I might have bits and pieces but need more to make up for my crappy memory.

And so boys and girls I find myself having more and more fearful moments concerning that place called Tomorrow. It is a door I fear to peer behind...
What lies beyond?
I don't now there is anything to be done for it but now that the fear is here, I can't figure out if being treated for that fear will make a difference or not. 

Worrying about this is harshing my zen...

Jeff

Comments

Popular posts from this blog

Dementia Cannabis Update

Update: 22 July
Project started, grow page and journal is here:

Operation: Constant Clarity


This is one of the most difficult posts I have had to write, mostly because I "had" to. Allow me to explain and I promise by the end you will not only understand the "difficulty" and the "had to" bit but also I hope you come away with a few new assumptions or conclusions, you pick and if all that passes you by, perhaps you will find illumination as this is some serious "dementia from the inside out" kinda shit.

The 18:1 Theory
Before I tell you what happened, please recall I have expressed a theory or hypothesis on the effects of a cannabis extract/concentrate that tests out to have a CBD:THC ratio of 18-1 on the demented mind. By demented I mean any brain with not just dementia but anything that alters so-called normal operation. I don't mean anything like it fixes everything, rather there are things that are fixed by this like PTSD and ADD that you …

Be Who You Actually Are

Many moons ago I was starting my day like many of us enjoying the gifts of dementia by spending most of it screwing up each and every thing I attempted to do, large or small and usually in ways both spectacular as well as costly.  On the verge of tears I spent about an hour medicating with my very best botanicals when I had the BFO (Blinding Flash of the Obvious, engineer-speak): I am still attempting to be something that I am not only NOT but barring acts of a supreme deity, never will be again. Its just that damned simple.

* What makes a persons personality unique is the precise set of influences, patterns of thinking, lifetime experiences or memories amongst many other things. These are all stored and/or controlled by the brain.

* The root cause of dementia is damage to select portions of the brain.

* For better or worse, the simple truth is that this will result in a different person. Not better or lesser, simply different, in the same way that any two coworkers might be very dif…

Holy Crap Batman! A hero with dementia!

Braven 2018
Hey kids, I ran across something you just HAVE to watch. I mean you as in readers of these words. Looking for entertainment last night I was scrounging some of the dodgier parts of the Internet for something not involving a cape or "found footage" to watch. Long story short I ran across something from this year (2018) called Braven, starring Jason Mamoa (Aquaman/Ronin on Stargate Atlantis) and Stephen Lang (the major hard-ass in Avatar).  Plot reads like a B-roll actioner, drug dealers drop in on county folk and try to take them on their own turf. I agree, major tired plotline BUT......
Here is the kicker: The country folks (Mamoa/Lang) are in the cabin in the woods kinda thing because Lang (plays Mamoas dad) has alzheimers (he blames it on some Vietnam injury but...) and got into a fight at a local bar, thinking some girl was his dead wife out on the town. 
Of course Jason beats everyones ass in proper manner as it should be but thats why these two are in the c…