Apr 6, 2013

Alzheimer's and the Wiring of My Brain

Over my life people have been surprised when I look at a situation and come to a completely different conclusion than they do. I actually call this "looking beyond the obvious".

Bob DeMarco
Alzheimer's Reading Room

Alzheimer's Disease

This article is about my brain.

For a long time now, people have been telling me I am "unique", that I am different. I have been told on several occasions that I do things the exact opposite way it says to do them in the books on Alzheimer's caregiving.

It is easy for me to understand why I do things the opposite way it says to do them in the books.

Why? I didn't read those books. Not that I don't read, I read voraciously. Just different books I suppose.

Over my life people have been surprised when I look at a situation or problem and come to a completely different conclusion than they do.

I actually call this "looking beyond the obvious".

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Looking beyond the obvious usually means looking at a problem from the other side of the coin. Looking at the problem from the other persons perspective, or looking at the problem from the other side.

Somehow, someway, I usually see and do from the opposite side. This is the way my brain is wired.

I have another quirky quirk.

I choose not to remember the bad stuff. Oh, if you ask me I can recall the bad stuff but only if you ask. I choose not to think about it. The bad stuff is in my brain somewhere, but not in the part where I am actively thinking.

Frankly, my brain is too busy thinking about what I am going to do, so I don't have time to think about the bad stuff.

Let's put it this way.

You can learn from the past, but you can't change the past. You can change the future.

This more or less brings us around to Alzheimer's caregiving.

One night, actually the early AM, I thought to myself, we are going to start living our life the way we always had. The we is Dotty and me.

Over the years I tell this to caregivers and they tell me, well we can't do this and we can't do that.

I can only speak for myself.

I didn't give much thought to what we couldn't do. I was too busy thinking about what we were going to do. Let's put it this way. There are lots of things I can't do today that I could do many years ago. For me that is a given. I can't waste time thinking about what I can no longer do. I am too busy thinking about what I am going to do. Right now.

So I made this decision, Dotty and I would get out of our cave and DO. Along the way I learned that Dotty would say NO most of the time. However, I knew and understood that before her brain broke she would have said YES.

The word NO was hard to deal with. So I invented a new World. I call this world -- Alzheimer's World.

Pretty soon after a lot of trial and error, I got the hang of Alzheimer's World. This allowed me to live two lives. One in the real world, and one in Alzheimer's World.

Alzheimer's World is a weird strange place and it takes time to get use to this new and different place.

For the most part, everything in Alzheimer's World is upside down and backwards. So its almost like you have to relearn how to communicate and live. This lead me to another simple conclusion -- something had to change and that something was me.

Change is never easy. Especially when you have to reinvent yourself. So, I had to rewire a part of my brain.

Don't get me wrong. What happens in Alzheimer's World does spill over into real world. As I result, I often feel heartache, a sore stomach, and cognitively dizzy.

After about 4 years, I really started to get a good grip on how things work and how to cope in Alzheimer's World. Once I did it things didn't seem so bad.

Yes, I rewired my brain. I guess you could say I am different because most of the time I forget that Dotty has Alzheimer's. I already told you, I can't consciously remember the bad stuff.

So Dotty and I live our lives accepting all the way that Alzheimer's World is a different place. We live in a world filled with Alzheimer's, we have no choice.

Meanwhile, when I was trying to yank Dotty back into the real world, she was mean like a junkyard dog, engaging in all kinds of behavior that made me sad, angry and disconcerted. 

Alzheimer's behaviors are confusing if you try and relate them to what is expected in the real world. Not confusing at all in Alzheimer's World.

In Alzheimer's World the same behaviors are not disconcerting, they are the norm. It is easy to accept the normal.

My brain told me, that is Alzheimer's buddy boy -- don't confuse yourself.

If you want to know the truth, I honestly thought I could will us to have a better life. That was more than five years ago. So I guess you could say my brain told me I could do it. My brain won't allow me to think negatively for long. Willpower. It worked for us.

I suppose what I want to say is you can have a really good life with Alzheimer's as part, part, of the equation.

Here is the best part. I now know hundreds of Alzheimer's caregivers that rewired their own brains. Some of them got the idea right here on the Alzheimer's Reading Room.

Many of you that have been here for a while see the sweet little Dotty in the videos and in the podcasts. You never saw the mean spirited woman I had to live with for a few years.

I changed, Dotty changed, and for the most part it is all good.

My brain told me to do it.

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Original content Bob DeMarco, the Alzheimer's Reading Room