I realized that I am now a stone skipping on the pond of reality.
Jeff
here with something else I wish folks could know about Lewy Body
Dementia. Maybe AD and PD folks are like this and just can't tell us, I
don't know. The understanding on all of this is pretty weak for
everyone.
However I wanted to be CFB about something...I get asked alot how I am doing and if asked at the wrong instant, I do what I normally do and answer very literally and if that instant is very wrong, I describe the effects of being in a down-phase (fog, motor-skill difficulty, aphasia is worse, etc) that person begins to assume thats how I am all the time at this phase of my degeneration. Not true or at least, not accurate.
Explained elsewhere Lewy Body Dementia patients cycle in and out of various degrees of dementia throughout the day. Little pattern to it, can happen any time, last for any time.
Here's the thing though: when you start with this stuff, you spend 90% of your waking day in your up-phase with only occasional dips into dementia. As time/the disease wears on, those dips into dementia become longer and longer every day over the course of a year or more. It happens so gradually you just don't notice it until one day you realize that equation has flipped itself: you are in dementia state more and more time of each day and since each day is a fixed length, that means you are spending less and less time in the up state.
Let me tell you one more thing about this change: whether you realize it or not, you at least subconsciously realize this and start trying to save your most valuable things you must do for these progressively smaller little slots of time. Any other time you are incapable and the worst of it all is, these things you value so much, these things you feel are momentous to set aside your dwindling daily allotment of sanity for, these are all things any 12 year old could do riding the bus to school.
With these smaller periods where I can rely on having a working brain, I have to prioritize stuff as best I can but as a result, friends don't get written to, things don't get done, etc.
Thus it was today that I was feeling overwhelmed at all the things I felt I needed to accomplish before checking out and I realized how possibly futile it was because today I realized I was like a stone skipping across the pond of reality, never staying long, just dipping my demented toes into your world.....
Now here is the thing about doing things in two realities like we face daily: Anything you "do" in the fog state, only really pertains or affects that state, or counts in that state. Example: You think you made your wife a wonderful meal but in a fog state, that meal could require a trip to the emergency room. At the same time, anything you expect to get done and have impact in the "real" world must be accomplished while in that world and since your up-states coincide with that reality, that is your window of time in which to matter. So you gotta be what my dad used to call Johnny On-The-Spot to get anything tangible accomplished and with the moments of clarity diminishing in duration and frequency, anything big you have planned to try and accomplished while you are able to is like any big project that has been worked into a schedule of hours or days, only in your case, life is constantly shortening the work-week, giving you fewer hours to get done what you need to. In the end, not everything will see the finish line before I do.
As my best friend in the Army was known to say, it's just that damned simple.
However I wanted to be CFB about something...I get asked alot how I am doing and if asked at the wrong instant, I do what I normally do and answer very literally and if that instant is very wrong, I describe the effects of being in a down-phase (fog, motor-skill difficulty, aphasia is worse, etc) that person begins to assume thats how I am all the time at this phase of my degeneration. Not true or at least, not accurate.
Explained elsewhere Lewy Body Dementia patients cycle in and out of various degrees of dementia throughout the day. Little pattern to it, can happen any time, last for any time.
Here's the thing though: when you start with this stuff, you spend 90% of your waking day in your up-phase with only occasional dips into dementia. As time/the disease wears on, those dips into dementia become longer and longer every day over the course of a year or more. It happens so gradually you just don't notice it until one day you realize that equation has flipped itself: you are in dementia state more and more time of each day and since each day is a fixed length, that means you are spending less and less time in the up state.
Let me tell you one more thing about this change: whether you realize it or not, you at least subconsciously realize this and start trying to save your most valuable things you must do for these progressively smaller little slots of time. Any other time you are incapable and the worst of it all is, these things you value so much, these things you feel are momentous to set aside your dwindling daily allotment of sanity for, these are all things any 12 year old could do riding the bus to school.
With these smaller periods where I can rely on having a working brain, I have to prioritize stuff as best I can but as a result, friends don't get written to, things don't get done, etc.
Thus it was today that I was feeling overwhelmed at all the things I felt I needed to accomplish before checking out and I realized how possibly futile it was because today I realized I was like a stone skipping across the pond of reality, never staying long, just dipping my demented toes into your world.....
Now here is the thing about doing things in two realities like we face daily: Anything you "do" in the fog state, only really pertains or affects that state, or counts in that state. Example: You think you made your wife a wonderful meal but in a fog state, that meal could require a trip to the emergency room. At the same time, anything you expect to get done and have impact in the "real" world must be accomplished while in that world and since your up-states coincide with that reality, that is your window of time in which to matter. So you gotta be what my dad used to call Johnny On-The-Spot to get anything tangible accomplished and with the moments of clarity diminishing in duration and frequency, anything big you have planned to try and accomplished while you are able to is like any big project that has been worked into a schedule of hours or days, only in your case, life is constantly shortening the work-week, giving you fewer hours to get done what you need to. In the end, not everything will see the finish line before I do.
As my best friend in the Army was known to say, it's just that damned simple.
Comments
Post a Comment