And so the comedian asks: how many nuts can you fit in a boat?
Update 02 Mar 2021: Caveat; this was written some time ago on a blog far, far away. Since then the formatting got bad but the dementia got worse. I have literally spent hours and used many of my very best curse words but I have never been able to get this any better. I am sorry but at this point I fear its byond my ability to fix. Please bear with me. Tks, Jeff
In the past I have used the analogy of sitting in a boat tied to a shore to describe progressive dementia. You are in the boat and the rest of your family, friends, everyone and everything you knew is on the shore, living their lives. At this point you are still a part of things, more or less. Every day you become a little less a part of that life and more a spectator of it. As the dementia progresses, the boat drifts a little further from the shore, the faces and voices become a little less distinct. Events have less and less impact on your daily life.
Occasionally we will venture to shore when we can but almost always we retreat to the known/trusted comfort of the boat once again. In time this boat becomes also our safety net because if nothing else, it is the place that we understand the longest. Its not that events on the shore can't touch us, its simply that often they don't.
Somebody shot someone, some ass ran for office, somebody won something....even the news begins to drone into almost white noise after a bit. Is it apathy when the events are so removed from our reality that they don't even make sense?
When I was a kid, my dad thought he was a joker and he had this one joke he always thought was so insanely funny which went something like this:
Q: Why does a mouse when it spins?
A: To see how high are they.
EDIT: This is exactly, precisely how he told it; not a product of my aphasia.
Its not now nor has that ever been funny to anyone other than my dad and probably four-year-olds. The point of the joke though is the reply is as nonsensical as the question and the listener is left with less information than they started with and punchline is that the answer is information they simply can't do anything with. I know, haha. I had to grow up with it, so pity the author if you will.
The joke does make the point though that with such confusing input, you can't really tell what the joke is about or anything...its just noise. The *intent* of any joke or funny story is to invoke laughter...but when you don't understand the joke, the target emotion is lost.
That is exactly how events on the shore feels to me. Not all at once and moreso in a down-phase but that analogy fits like a glove. Every day the rope gets a little longer. Things make a little less sense, people start making less sense and when this happens, people pick up on it and slowly quit trying to make sense to you. Soon only the people who have to are talking.
At this point they are becoming dots on the shore but here is the really weird part for me: it may seem like forced solitude but its not, it really isn't. The subject that is fearful for most people is only fearful because they have the most to lose, its simple human nature. For me, that loss is an inevitability at this point and maybe the best thing I have done in later life is to accept that. Not giving up, simply not wasting energy raging against something that doesn't even care if I am alive and I have zero chance of fixing/changing/whatever. Its like if you had a great job for a while but then the economy tanks and so you have to work for less for a while. You and your family may not be happy but as reasonable individuals you know you cannot change it so you learn to live within your new constraints.
Sure, working for less won't kill you but the analogy fits....if you look at it side-ways.
Now this all sounds terrible but there is another side to this as well; in the same way the patient can no longer discern events on the shore, the people on the shore have exactly the same vision and can't see whats happening in the boat either. That is the point of this story.
From my perspective in the boat, my mind is working WAY better than it may seem to the shore, I am still me and thinking stuff all the time, it just doesn't get out much, just like me. Again, loneliness is the quick assumption to make but check this out:
If there were only one patient in the world this would make sense but there are a LOT of us out in those boats and in the same way we are all cognitively far from that shared by normal people, our boats are all pretty close to each other. We tell jokes and say things that only the person in the next boat will understand and so while we are not active with the people we have been all along, we are still active as much as we are up to. We have parties all the time we don't tell you about. I party in my mind all the time. Sure this made paying attention in school difficult but its a great way to spend a dementia.
Put it this way: at this stage I may only have a couple of connections to the outside world but also know I could only handle a little more; keeping up with the few I know is an all-consuming process.
I suppose that is my way of saying I am still out here, staying as active as I can...but I am also learning I have limits. Even so, I am still here participating in life just as much as I can figure out to, still fighting the good fight (gawd I hate that expression), I am just having to do it on my own terms. I am fortunate to have a caregiver that understands that or maybe more to the point, I feel more sympathy to those that don't more than my own passing. Think about it: years in the MCI stage of hell vs what comes after. The math is pretty simple, as long as I have to ability to be a part of life I am going to until that ability is lost. Truth be told, I really don't care what happens then.
As the blues great Robert Johnson sang, I don't care what you do with me when I am dead and gone, bury me by the wayside so my ghost can catch a Greyhound bus and ride.....