Dec 1, 2016

Finding Alzheimers World

In my new World I learned how to understand, cope, and communicate with a person living with Alzheimer's dementia.

Alzheimer's care is often difficult and hard on dementia caregivers | Alzheimer's Reading Room

I'll start by mentioning that I studied communication in college and graduate school.

For 6 and a half years, I studied how people communicate, how they make decisions, and everything from Aristotle, to nonverbal communication, to risky decision making.

My initial goal was to teach at a University, do research, and eventually consult with businesses. That all changed when I found my way on to Wall Street.

By Bob DeMarco
Alzheimer's Reading Room

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I studied and learned all kinds of communication techniques during those years in school, and then I embarked on a mission to perfect them.

When I arrived on the scene to take care of my mother, Dotty, on November 17, 2003 you would think all I had to do was use the communications skills I had developed over the course of my life and everything would be "hunky-dorey".

As is turns out it was more like "disaster".

I understood from day one that when my mother was being mean spirited or downright crazy that it was the Alzheimer's disease that was causing the problem. Her brain was sick - fractured. So I never had a problem understanding the derivation of her new and horrible behavior.

In spite of knowing and understanding this, her new found behavior was driving me crazy.

I was happy one minute, angry the next. Often confused. I participated in interactions that "flew out of control" no matter how hard I tried to avoid them.

You name every negative emotion you can think of, every negative feeling you can describe, they washed over me like a tidal wave. In our daily interactions we did do one thing very well -- create stress.

I could not reason with my mother, and I could not change her.

I sat in my chair with a knot in my stomach and tried to figure out what I could do. The answer was elusive.

I knew I couldn't unlearn everything I learned in my life, that would take me forever. The way I had been communicating with my mother my entire life was not working. I finally accepted a simple but harsh fact -- she wasn't coming back. No amount of will power, or at least will power the way I was using it, was going to work.

At first I thought, I'll have to develop a brand new way to communicate. Then I thought, there is no brand new way. I already know the way.

Then one night while working with my da Vinci pad I came to an important understanding --

Something had to change, and that something was me.

I was both startled and elated. It finally dawned on me. I was trying to make Dotty come to me. It was time for me to go to Dotty.

I concluded, I needed to invent a brand new world, a place that was very different from the world from what I then started calling -- real world. I needed to invent a new place, get in there, and start learning from scratch how to deal with a person suffering from Alzheimer's disease. Don't get me wrong, I was taking my skill set with me, but I needed

to learn how to understand, cope, and communicate with a person living with Alzheimer's dementia.

In my new world, I was going to learn how to walk backwards, turn left instead of right, and to accept everything that was happening as the

"new normal".

It came to me in a flash, my new world, our new world would be called

Alzheimer's World.

Next, I did something I could never have expected. When I knew that I needed to shift gears, to get into the World, I started taking one giant step to the left. In order to get to Alzheimer's World, I had to physically step into Alzheimer's World.

I finally understood that I had to accept the new reality. From that point forward I started dealing with my mother in her world.

I stopped trying to make her come back to my world,

what we call the real world.

I started stepping to the left, shifted the mental gears seamlessly, and I finally learned how to communicate with someone suffering from Alzheimer's disease.

I learned how to communicate with my mother on her terms.

It was truly amazing. Instead of getting bent out of shape when problems arose, I actually started feeling very comfortable, very calm. The same exact behaviors that were hurting my heart, that were driving me crazy, and that were stressing me out were now expected. I had arrived.

I finally accepted the new normal.

Some of the things that Dotty did still continued to bother me. But mostly they made me laugh. "Here we go again". "Imagine that." I laughed instead of crying, or getting all bent out of shape. It really is fascinating at times. The Alzheimer's brain I mean.

Here is the best part of it all.

Once I learned how to live and thrive in Alzheimer's World,

Dotty became a nicer, kinder, gentler person.

I did too.

Now don't let me mislead you. This took about 4 years. Don't worry, you can do it faster than I did it.

Your are already way ahead of me. After all, you now know that all you need to do is take one giant step to the left and you are there -- Alzheimer's World. The hardest part is finding Alzheimer's World; and then, it gets easier as you go forward.

As soon as you stop venting, getting bent out of shape over normal everyday Alzheimer's behaviors, and start laughing at yourself - you are in and on your way.

Why not accept the new reality?

you can then apply for citizenship.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room. In the ARR we provide caregiver support and answers to the most difficult problems faced by caregivers each day. Bob lives in Delray Beach, FL.

Original content the Alzheimer's Reading Room