Mar 1, 2013

Did You Find Alzheimer's World?

When you start feeling good about yourself you will be surprised to learn that the person who has Alzheimer's will start feeling pretty good. Instead of getting that nasty vibe from you, you will be sending a very different signal -- I care, I'm here for you.

By Bob DeMarco
Alzheimer's Reading Room

Did You Find Alzheimer's World?
Many of the behaviors that Alzheimer's patients engage in are disconcerting and foreign to Alzheimer's caregivers. Alzheimer's patients have a way of driving us crazy.

Alzheimer's patients do things that make us angry, confused, frustrated, and they do them as a natural progression of Alzheimer's disease.

In other words, while we might see these behaviors as bizarre, they are actually a nature progression of Alzheimer's disease.

Let me make it simple. When a key part of your brain stops working you will start acting differently. The inability to think, or remember, makes a person different. So, they act differently than you or me.

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It is clear to me that a large fraction of patients with Alzheimer's disease ask the same things over and over, and do the same things over and over. I understand how disconcerting this can be -- it happened to me all the time.

It took me a long time to understand repetitive behavior and adjust to it.

I finally asked myself, why am I allowing this behavior to drive me nuts? I know it is going to happen, and I can even predict when it is going to happen.

I know its going to continue to happen everyday until I figure out how to do something about it. Why can't I accept that this is part of the reality of living with someone who has Alzheimer's disease?

Why can't I accept this as a "normal" part of everyday living with Alzheimer's?

Seems simple and straightforward doesn't it?

I finally realized that I needed to create a new mindset in order cope and deal with the behaviors that were driving me crazy.

It seemed to me that for Alzheimer's caregivers, there are two communication worlds: real world and Alzheimer's World.

In real world, we communicate in the same way we always have. This doesn't work well in Alzheimer's World. This is especially true if we allow recurrent behaviors that are common to Alzheimer's patients to get us angry, frustrated, and stressed.

I finally realized after years of thinking about it that it would be much easier if I went into Alzheimer's World, my mother's world, instead of trying to bring her back into my world. This was an important step. I decided to understand, cope and communicate with my mother on her terms.

In the beginning,  I realized I needed to create a trigger in order to get into this new and different world, Alzheimer's World, my mother's world.

So I physically took a step to my left as if I was walking into, or entering, this other world -- Alzheimer's World.  I more or less told my brain to switch gears with this step to the left. I had to do it I stayed in the real world and ended all bent out of shape.

In Alzheimer's World, the communication is very different than in real world.

One thing that makes Alzheimer's patients different from the rest of us is that their short term memory is gone. It is foolish to expect Alzheimer's patients to remember what was said a little while ago. They can't.

As Alzheimer's progresses, short term memory disappears. It no longer exists.

Once you accept and understand that short term memory is gone, you should not be surprised if a person with Alzheimer's asks the same questions repeatedly. They can't remember if they asked a question -- once or ten times.

You can remember because you can still operate in the real world. Your short term memory is still working. Alzheimer's patients transition to a new world in their mind -- Alzheimer's World, no memory world.

As I thought about this I came to a simple conclusion. Instead of trying to change Alzheimer's World, instead of trying to fight Alzheimer's World, not only would I accept Alzheimer's World as a reality, I would go into Alzheimer's World and learn how to communicate effectively.

Words don't work well in AW, especially when you use lots of words. I learned the fewer the words I used the more effective the communication.

So when my mother asked me --what day is it? The answer was Thursday. Not I already told you its Thursday or you just asked me that five minutes ago. A one word answer.

You know what I learned? I learned this is simple to do and effective, but you do need to step to your left and practice.

I learned I didn't get bent out of shape in Alzheimer's World when I kept it simple.

I learned something else. Once you finally accept that this is the way it is going to be, you might find yourself laughing or chuckling when the questions keep on coming. You fully expect what is going to happen -- in advance. You figured this out in the real world -- by the way.

After I while I realized it must be really confusing when you don't know what day it is. Or, when you can't remember if you ate today, or forever for that matter.

I started thinking maybe this is one of the reasons my mother gets mean or starts acting crazy. If she doesn't know what day it is that must really be disconcerting. Think about all the other things she no longer knows or remembers. Things we take for granted when we communicate with others.

I concluded that Alzheimer's patients are most likely unsettled much of the time.  Yeah, I think so.

Every wonder what it feels like when you are drawing a blank while trying to think?

So I added another behavior to my arsenal of communication tools that I use in Alzheimer's World.

If my mother started asking me a question over and over I thought to myself, she must really want to know, or need to know soemthing. Maybe not knowing is disturbing to her.

Here is what I started doing. Instead of getting bent out of shape and giving her a completely exasperated response I started doing the opposite. I walked over, put my arm around her, put my head against her head and said -- Thursday. Then I gave her a little squeeze.

Over time, I started doing this more often and in different situations.

Guess what I learned? I learned that I was no longer exasperated, bent out of shape, or stressed out. Quite the opposite in fact. I felt good about myself. I felt good, not bad.

Here is the best part. We both started feeling good, instead of BAD.

So you see, you do have a choice. You can accept that certain things are going to happen over and over. You can come to an understanding that these behaviors are not part of your real world, they are part of a new and very different world -- Alzheimer's World.

Soon you might conclude that you need to start developing some new and different communication strategies to communicate with someone that has Alzheimer's.

Soon you might learn that something that use to drive you up the wall can actually have the exact opposite effect -- it can make you feel good about yourself. Good when you deal with the situation effectively.


When you start feeling good about yourself you will be surprised to learn that  the person who has Alzheimer's will start feeling pretty good. Instead of getting that nasty vibe from you, you will be sending a very different signal -- I care, I'm here for you.

It really is a form of osmosis. Instead of sending negative energy, you start sending positive energy when you communicate. This positive energy starts to sink in. You break down the wall between real world and Alzheimer's World and bond.

As you learn to communicate in Alzheimer's World you will be doing something that is very important. You will be creating an environment that is very safe and very secure. Once your Alzheimer's patient starts feeling safe and secure they will become kinder and more gentle.

If I treated you with respect and understanding wouldn't you be kinder and more gentle to me?

Before you know it, you might learn the most important lesson of them all -- Alzheimer's World is very different than you think. Alzheimer's World is a good place.

Imagine a place were the understanding, the ability to cope, and communicate improve little by little each day.

You might very well stand up and shout, I made it to Alzheimer's World.

Did you find Alzheimer's World?


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Bob DeMarco
Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room. Bob is a recognized Influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. Bob lives in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room