At first I was not sure if I would post this or not but I think I need to. If you read the words at the top of the site, I profess to document dementia from the patients side and this is absolutely worth knowing.
I am right now in the throes of a down-cycle in its most classic format. If my words here are weird, its a weird place I am in. I have been in this place (deep fog, brain misfiring, that feeling of sparks in my head, pervasive confusion about everything from how to make a sandwich to how to wipe my own butt. I remember how to wipe someone elses butt though so I guess that should count for something.
I am writing this down because even though writing ANYTHING right now is an exercise in phenomenal mental anguish, I need to do this because whats most-affected right now is one of the worst/most powerful changes to your reality when you have dementia. The fact that the LBD allows me to "dip into dementia" and then write down the results, in those cases I have the benefit of a working mind. Right now I barely have a working nervous system. As such, my words will likely reflect that; how much or little makes sense will probably depend on how much I clean it up after the fact. Part of me says leave it raw, another part says if I don't clean it up first, some folks will never get past the writing and get the the understanding. I am at an impasse on that and the finished product (if there is one) will probably reflect my final choice.
I am writing this because it has to do with something that is a bit of a ...not sure of word...oxymoron? No, doens't sound right..let me try again. I am writing this because everyone "knows" even if they don't really know what the symptoms of dementia are. What these symptoms all center around are things that can be quantified and measured, and therefore detected.
However the same brain damage that affects my speech, my memory, my general cognitive abilities, my gait, everything that can be observed, that damage also screws up something you as the outsider cannot readily see but any dementia patient will assure you its real, and that is the rather flexible nature time takes on as dementia worsens.
I have tried to describe this before but it bears describing now for the simple reason things have progressed since my last writing on the subject of time.
Time is screwed up for folks with dementia, pure and simple. I can describe my own problems with it and where yours may be different, they will still be there and they won't be *that* different. As your dementia worsens or progresses your sense of time will become even worse or maybe closer to the truth, time will be way screwed up for you far more often or more of the day, no time off for good behavior.
Normally for me, time is speeding up, sometimes a little and often by alot. It happens more often this way than it does where time slows to an infitismal crawl. I have written off the former to micro-slips of working memory; as you forget more and more seconds of the day, the day speeds up and as a result, your sense of a week speeds up and your sense of longer time REALLY speeds up.
That said, one other fun side of our warped sense of time is that we can't really sense things in the now like a minute, or a day, a week, a year...not in the way we sense that minute, week or year but rather since our mind has no concept of how long a for example) month is, if someone says to me something like "I will come back and visit you in two months" I not only would have no sense at all when that person might come back (when two months would be up), I cannot even *conceive* of two months and it might as well be forever.
If this sounds half-baked for the article, I would also submit that for at least the LBD patients I know that we don't really care about our date of death either; none of us. Its just a number to us...it could be tomorrow or fifty years from now, we can't tell and since we can't tell, there is little impending doom or threat about it. People think we are brave and shit like that but the truth is, we are apathetic to it at best.
The closest I can bring this to a normal person, try this story. Say you went to a doctor for a headache and after extensive testing, this doctor informs you with a grave face that you have a brain tumor, its inoperable and you will die from it...your heart sinks, you feel dread like never before and with a shakey voice you ask the doctor how long do you have? When will you die from this tumor? He replies: When you are 103 years old.
Whew! You feel this weight lift from your shoulders, you are suddenly glad to be alive and everything is OK! Yes you will still die from the same tumor and everything, the time-window is all that has changed and since you cannot imagine yourself 103 years old, the threat seems far away.
Its the same thing...time. When it happens on a large-scale macro-level you can get all philosophical but when it happens at a micro level, your perceptions of reality go right out the window. That is what is happening in this down-phase for me. The disease has progressed to the point where I am in fogs more than I am not and for longer periods during the day. Now my periods of clarity feel more like coming up for air just long enough to catch my breath before heading back down into the foggy depths below.
What is this like? Well when time goes fast, its easier to take in stride than when it goes the other way as it is now. Time has dialated to the point I cannot even imagine an hour from now, I can't conceive it, it could be next week or next year, it all feels the same to me.
One bit of a caveat I need to insert here though. This time speeding up or slowing down, thats my perception of YOUR time. The time in my realm, where my cognitive retirement lodge is, that time works just fine and most importantly it works as expected. Its this time here and the things that depend upon it that are nearly unmanageable.
The best way I can describe this is to describe what I sense around me right now. As a general background/starting point, our (my wife/caregiver and I) our day today was that I would "warm up" with our Playstation after which we would play "our game" which is Dying Light in coop mode. It is a blast and gives us a way to be something other than caregiver and patient together.
But today while warming up, I realized I was dropping segments or periods of reality, tihngs being far away and suddenly in your face, or things that are very predictable in a game you have played since 2014 suddenly become unreliable, unpredictable and downright scary. This also told me there was no chance of my surviving Dying Light, a much more interactive and fast game. So its watching TV and by that I mean the many seasons of TV shows we have archived on our server, usually Law and Order or CSI or Homicide: Life on the Street.
But now, a single 42 minute episode of Stargate: SG1 seems to have lasted for hours and I mean like five or six. In ways it feels like we have been watching this single episode for what feels like days to me. Time has slowed to the point that I am nearly certain "tonight" won't get here before I die, not that I think death is that impending, rather tonight seems to be taking an insanely long time getting here. But time is bendy right now too; I flash-fried some potatoes in oil by placing them in hot vegetable oil, raw potato cubes (diced) and the whole thing cooked to over-doneness in the literal blink of an eye...or what felt like to me as about 30 seconds...to my perception I put in diced raw cubes 30 seconds ago, I lift the lid to check and turn the cubes in the oil to find them not just done but nearly over-done, some of the smaller bits actually being too done to eat. Such is cooking these days...
I feel like I have been chewing the same bite of food for an hour. I can't tell or sense the time of day so even with our limited routine, I can't tell not only what to do next, I can't figure out WTF I am supposed to be doing *now*. So I fidget, waiting for something to present itself.
I also try to think of things to do in order to somehow get to the end of this seemingly endless episode of television. But you want to know the fucked up part of all this? I know it isn't "tonight" yet because everyone in the house, including the little buddies, are wide awake doing things, and we tend to crash early around here.
So its not tonight yet which means even if I somehow surive this episode of television; there will be another right after it. From that perspective "tonight" seems like a million years away. I simply cannot see where this all will end for the day, and at this point, ending the day sounds cool because at that point it is quiet so I can think the clearest but most important for my mental health, that is the time where it is the easiest to slip out to my mental retirement home, that refuge I wrote of.
There, in that place, for me, time goes at a predictable pace and most importantly, at my pace. I am at peace there, it is very much like therapy, a sauna at the end of a long day of physical effort. This is where I go for hours at night, often only to return just shy of midnight, at which point do I try to attempt sleep. I discount the possibility of simple dreaming partly due to my ability to affect change there. More, during this visit I keep a sort of tether to this reality and pop back now and then for a snack, drink, use the bathroom, etc.
In a weird way its like riding an escalator to and from a different floor of a department store, its just a little effort of will to go there or stay here. I do this all the time during unpleasant medical stuff like extened blood draws or worse, the MRI. It is becoming as simple as say kicking off your shoes and putting your feet up. I do it sometimes in the car when things get too chaotic and stressful, I can be in my lodge of sorts, chilling out.
In other words, little effort and few things can prevent me from going there; intense acute pain is one. One thing I hadn't considered however is this: would the urge or need to pee be enough to yank me back if I am really into being there for some reason? I mean in a way its like an out of body experience so if those folks are out of their bodies, and their bodies decide the need to pee is there, what happens?
I know the sudden need to pee can seriously fuck with my executive function (I can be carrying two plates of food from one room to another, have the sudden urge to pee which basically flushes anything pre-existing out of my working memory buffer, like say oh I was carrying food and of course, crash, food on floor, its as predictable as the sunrise tomorrow.
I feel like I have been writing on this for hours yet there is good old SG1 still. Whats screwed up is that tonight feels forever or at least many many hours and maybe days away and I drive myself to distraction trying to figure out what to do in order to fill all that time...I have long since lost the plot of the show and the upside of another episode afterwards is a way to start over and not get lost again. Of course messing things up is the real sense that I will have many hours to wait in order to get to that point. Yes I know logically this is 42 minutes of video (I edited it myself in better times) but...I keep checking the file-size on this video because I am astounded at getting so many hours of HD entertainment out of only 290 megs of video.
But thats just another mystery that will be available to you in the gift shop as you exit the tour of Jeff-land....
Time for medication to smooth it all out...
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