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.

This was one of the first surprise facts that got me when this set in. When you are even just in the MCI (Mild Cognitive Impairment) phase of dementia, you are no longer bored; boredom doesn't happen anymore. I can sit in a chair in a quiet room, in a quiet house, with no entertainment running, no TV, no Internet, nothing and I am not bored. For reasons I am not clear on, if boredom is your mind being unsatisfied with your current level of activity or simply being uninterested in what you are doing, those things just don't happen for me anymore. Time I think is a big player in this too as I have long lost any sense of time and as such I never feel like I have tons of time on my hands with nothing to do.  Whatever the reason, I no longer experience boredom.

Insanity doth haveth its privileges.

I often to refer to my daily life as a magic show. There is no real magic involved but what happens definitely appears to be magic from my POV.

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.

So often the symptoms of dementia are the usual suspects most talked-about such as memory loss, hallucinations/delusions and so on. However as any patient will tell you, it only takes a little screwing with your wiring to completely change how you view reality, stuff the normal folks never see.

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:

I know what you are thinking: I have been answering the door my whole damned life, I'll be damned if I will stop now!

Um OK except you are not the same person that answered the door for the past hundred 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....

Nuff said.

Normal folks have no clue how freaking hard our days are, and I don't mean the results of the dementia, rather the physical exhaustion from trying to get through a day in spite of it.

I state this not to elicit sympathy or pity but rather to explain that all of this adds up to a big physical symptom at the end of our "day": out and out, physical exhaustion, not unlike if we had been hauling bricks all day. Up hill. The best and maybe only way I can explain this goes like so:

When I was normal I got through my day fine because all of my thrusters or mental resources were firing efficiently. However now that the LBD has damaged parts of my brain, other parts must work twice as hard to make up for it in an effort to achieve the same things normals can reach with ease. Think of the last time you injured a leg enough that you could not use it to walk with for a few weeks. You will notice or recall that at the end of every day you were wasted from not only trying to get around on one leg, but the act of which over-worked the hell out of that "good" leg. 

Same principle at work here: to try and keep up with conversations, negotiate public places, ordering food or making any choices or hell even choosing paper or plastic can leave me physically panting and needing a nap after enough of it goes on....and thats just to strike just below the target of "normal."

I am always trying to find ways for normal folks to understand different things about our existence...but in this case the best I can do is ask a normal person to try to breath mashed potatoes, the act of breathing would be about as hard (and seemingly impossible) as any extended non-trivial brainwork is for us, every day.

So next time we are walking too slow or making up our mind about dinner too slow or we are too lethargic at the end of the day (if we make it that far), try mixing up a big bowl of mashed spuds and having a go for a while....

I am too wiped to really describe this one so the video will have to do....