Nothing is as it appears: Of nightmares, nincompoops and some very thin ice.
Life
teaches us many lessons if only we have the ears to hear them. Dementia
in general and Lewy Body Dementia in the specific seems to have the
ability to bolt those ears onto your head with a nailgun.
If there was one message I would like to have tattooed onto my forehead, it would probably be "Nothing is as it appears". I know who and what I am inside, what I have going on and what I don't and for sure that is rarely reflected in my demeanor or speech. Take for example the last visit to the pain doctor or "Pain Management Specialist". I am just finishing a grueling appt and just want to go home so I am doing the Parkinsons Shuffle across the waiting room to find a chair whilst I await my caregiver....and I look up and there is this old lady sitting there with a walker in front of her giving me the stink-eye because its taking me so long to cross the floor. I don't think she would have looked at me any differently if my hair was on fire. The surreal nature of this hits me: here I am in an waiting room FULL of broken people, catching the evil eye from an old lady with a walker, as if I was doing some kind of cultural appropriation by having problems like this at my age....well she saw what she saw but if she "saw" what was really going on, she would have observed me mumbling to myself that if I just had another 15 minutes I was going to shuffle over to her walker and loosen some bolts on that SOB. Won't be laughing then, will ya?
Only thing missing (in my envisioning of this satisfying event) would be the dish soap on the floor to make her slip and bust her ass sooner. In fact if she could have seen what was in my head at that moment I might have been arrested.
But nothing is what it seems with us, or at least me....here is something I bet you didn't know: often people will see me sitting staring into space, seemingly unaware and definitely unconcerned about my surroundings and think I am just chilling. The truth is far uglier and actually takes some of my best meds to get through the day. I bet many patients will recognise this fun hobby. You have carried alot of responsibility through your life, you are accustomed to people and things depending upon you; as such with so much responsibility you are invariably almost always busy. After a lifetime of that you become conditioned to always be in a sort of "fight or flight" mode but more like "My brain is reminding me that I have responsibilities and if I am sitting here idling, I will almost certainly get behind and never be able to fulfill all of my obligations." The next faulty step though is to say to yourself "If I am supposed to be doing something vital, what was it?" which, when mixed with a healthy dose of poor short-term or working memory, will lead you into this lather, rinse, repeat cycle of "I gotta be doing whatever it is I am supposed to be doing." followed by "I have no idea what day it is, what time it is, what I am supposed to be doing, or if I am even supposed to go someplace today. But definitely recall no tasks." which is because of course you have none because of course you will screw things up if you try anything more complicated than eating an apple. To bring it home though, upon realizing you cannot recall what task you are supposed to be doing, you go right back into the "but I gotta be doing something and I better not be late doing it!"...then back to "what am I supposed to be doing?" This only conveys what sounds like a simple logic problem but when its you living it, it feels very real and very powerful. To put it in a way that normals can understand, you know that classic dream where you find yourself at a board meeting (or some public function) and find yourself naked? This feels very much like that, you feel beyond vulnerable, beyond unprepared for what lies before you (that you cannot see), you at once feel embarrassed and bewildered.
The only way I seem to break out of this "stupid loop" is if the classic "Oooh! Shiny!" thing happens and I am distracted by some unexpected event in my day like the dog walking by.
Sadly though, all the the deceptive appearances are not falling on the shoulders of other people: my personal worst is trying to think of tasks and projects to do but I keep thinking them up as if I were not defective....to my mind, I can visualize myself doing every step of every task. Those steps to me though can appear to be like a frozen lake in March: you never know when something that looks solid may fail and try to kill you. That applies to walking on thin ice as well as navigating your way through any non-trivial project. We all have had the experience so no need to expound upon the details of my own nightmares. So my wife can ask me "What do you have going on today?" and I am often stuck in a Groundhog Day like stupid loop of I am supposed to be doing something important today but no freaking idea what....I can be almost quaking inside from the anxiety but look calm and even bored on the outside. And if I can do one thing to lessen the stress and drama for my caregiver, on the inside it shall remain until I am room temperature.
These are just a few of the ways that appearances are deceptive in my world....oh as for the picture at the top of the article: that's my breakfast (or it was when I wrote this)....see what I mean?
Jeff
If there was one message I would like to have tattooed onto my forehead, it would probably be "Nothing is as it appears". I know who and what I am inside, what I have going on and what I don't and for sure that is rarely reflected in my demeanor or speech. Take for example the last visit to the pain doctor or "Pain Management Specialist". I am just finishing a grueling appt and just want to go home so I am doing the Parkinsons Shuffle across the waiting room to find a chair whilst I await my caregiver....and I look up and there is this old lady sitting there with a walker in front of her giving me the stink-eye because its taking me so long to cross the floor. I don't think she would have looked at me any differently if my hair was on fire. The surreal nature of this hits me: here I am in an waiting room FULL of broken people, catching the evil eye from an old lady with a walker, as if I was doing some kind of cultural appropriation by having problems like this at my age....well she saw what she saw but if she "saw" what was really going on, she would have observed me mumbling to myself that if I just had another 15 minutes I was going to shuffle over to her walker and loosen some bolts on that SOB. Won't be laughing then, will ya?
Only thing missing (in my envisioning of this satisfying event) would be the dish soap on the floor to make her slip and bust her ass sooner. In fact if she could have seen what was in my head at that moment I might have been arrested.
But nothing is what it seems with us, or at least me....here is something I bet you didn't know: often people will see me sitting staring into space, seemingly unaware and definitely unconcerned about my surroundings and think I am just chilling. The truth is far uglier and actually takes some of my best meds to get through the day. I bet many patients will recognise this fun hobby. You have carried alot of responsibility through your life, you are accustomed to people and things depending upon you; as such with so much responsibility you are invariably almost always busy. After a lifetime of that you become conditioned to always be in a sort of "fight or flight" mode but more like "My brain is reminding me that I have responsibilities and if I am sitting here idling, I will almost certainly get behind and never be able to fulfill all of my obligations." The next faulty step though is to say to yourself "If I am supposed to be doing something vital, what was it?" which, when mixed with a healthy dose of poor short-term or working memory, will lead you into this lather, rinse, repeat cycle of "I gotta be doing whatever it is I am supposed to be doing." followed by "I have no idea what day it is, what time it is, what I am supposed to be doing, or if I am even supposed to go someplace today. But definitely recall no tasks." which is because of course you have none because of course you will screw things up if you try anything more complicated than eating an apple. To bring it home though, upon realizing you cannot recall what task you are supposed to be doing, you go right back into the "but I gotta be doing something and I better not be late doing it!"...then back to "what am I supposed to be doing?" This only conveys what sounds like a simple logic problem but when its you living it, it feels very real and very powerful. To put it in a way that normals can understand, you know that classic dream where you find yourself at a board meeting (or some public function) and find yourself naked? This feels very much like that, you feel beyond vulnerable, beyond unprepared for what lies before you (that you cannot see), you at once feel embarrassed and bewildered.
The only way I seem to break out of this "stupid loop" is if the classic "Oooh! Shiny!" thing happens and I am distracted by some unexpected event in my day like the dog walking by.
Sadly though, all the the deceptive appearances are not falling on the shoulders of other people: my personal worst is trying to think of tasks and projects to do but I keep thinking them up as if I were not defective....to my mind, I can visualize myself doing every step of every task. Those steps to me though can appear to be like a frozen lake in March: you never know when something that looks solid may fail and try to kill you. That applies to walking on thin ice as well as navigating your way through any non-trivial project. We all have had the experience so no need to expound upon the details of my own nightmares. So my wife can ask me "What do you have going on today?" and I am often stuck in a Groundhog Day like stupid loop of I am supposed to be doing something important today but no freaking idea what....I can be almost quaking inside from the anxiety but look calm and even bored on the outside. And if I can do one thing to lessen the stress and drama for my caregiver, on the inside it shall remain until I am room temperature.
These are just a few of the ways that appearances are deceptive in my world....oh as for the picture at the top of the article: that's my breakfast (or it was when I wrote this)....see what I mean?
Jeff
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