The Dementia Zone
Greetings kids, Jeff here. This is a place where I will be sending back little messages in the bottle as it were. When in the down/foggy side I will try to write things down and share them here. Hopefully they will help someone. Not worthy of articles of their own, these are little factoids about being a person with dementia.
In any event, welcome to The Dementia Zone. Keep your arms and legs inside the car at all times.
The problem is the dementia screws with your frontal cortex which is what allows you to multitask which (if working) would inform you that your wife just walked into the room and sat down. The trouble with dementia is if you are focused on something else, your other inputs (smell, vision, hearing, taste, etc) are often not processed consistently. That has the result of your wife seeming to appear from thin air right in front of you. This basic pattern repeats itself throughout the day: my dogs appear and disappear, you can put a pan of soup on the stove and burn it black it what appears to you to be mere seconds.
This is for caregivers or anyone tasked with caring for a person with dementia. We do our best to put our best face forward as much as is possible, not that we don't have a best face, we are just not sure of which one is appropriate. So a general malaise keeps most from worrying about our stress. However there are lots and lots of things going on behind our eyes and one of the most frequent times this activity is at its max is when we are forced to ask you something that we know we should already know the answer to from being told, and you know from past experience how trying this can be on normal people, constantly being re-asked something over and over again. Its like a 4 year old with the question: Why? If you have kids, you get it and if you don't you make still be sane.
But make no mistake: we know we should know it, we know we have asked before, maybe many times before but its usually something you consider important or vital to know. We die knowing how you will feel, how you should feel, how we would feel were we you, hearing the same question for the nth time, and thats the worst: we don't know if we asked you once or a hundred times, raising the stakes immensely.
I will tell you how bad this is: its not just a problem, its a filter. That's right: there are a whole host of questions when we might have asked you before that we consider the risk simply too high for the estimated value of the answer and so we just go on living w/o knowing. Its safer that way.
I made a video so show how only a little dementia can make a common situation seem absurd to us....
It is true that usually most people can empathize when they have experienced a similar pain or situation themselves. The contrary though is equally true: if they have not experienced something most absolutely can not empathize, no matter how much they claim to.
So I try to find stories and situations that can kind of put a normal person in our shoes for a few moments. Here I present one way to experience what it feels like to have aphasia if you are under 50:
Um OK except you are not the same person that answered the door for the past hundred years...you can't think quickly enough to process what is being said, whoever is at the door wants it over with as fast as possible and so will unlikely be patient with your issues and to top it all off, even if you answer the door and do your best, odds are long against it having a good or even satisfactory outcome....