I accept that this new world is very different from the real world as I know it. I accept the behaviors that my mother often expresses -- the behaviors that drive me crazy in real world -- are perfectly acceptable and are the norm in Alzheimer's World.
By Bob DeMarco
Alzheimer's Reading Room
Alzheimer's Disease, Alzheimer's World and The New Reality.
This article should be considered as a companion to that article. They go hand in hand.
Both articles are designed to help you communicate with someone suffering from Alzheimer's disease.
After years of trying to figure out how to communicate effectively with my mother Dorothy who suffers from Alzheimer's disease, I concluded that I needed a good mental construct so that I could better understand and comprehend what I was trying to accomplish.
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I finally concluded that in order to communicate effectively with my mother I had to change. I had to develop a new set of communication skills in order to deal effectively with her new reality. This simple realization lead me to the creation of what I now call Alzheimer's World.
Over time, I learned how to step seamlessly into this brand new world. It did take lots of time and effort to get to where I needed to go. But, first I had to understand where I needed to go.
My goal was simple and straightforward -- I wanted to learn how to communicate effectively with someone suffering from Alzheimer's disease.
When I step seemlessly into Alzheimer's World I am the same person, my mother is also the same person. However, my mother's sense and understanding of reality has changed. It changed because her brain is sick.
When I go into Alzheimer's World, I enter my mother's world. I join her in her new understanding of reality.
I accept that this new world is very different from the real world as I know it.
I also accept that the behaviors that my mother often expresses -- the behaviors that drive me crazy in real world -- are perfectly acceptable and are the norm in Alzheimer's World.
This simple understanding brought with it a tremendous sense of relief. I stopped feeling like I was going nuts. I stopped feeling like my mother was nuts.
Over time I developed a sense of calm. Somehow when I step into Alzheimer's World I experience a new sense of calmness. This new calmness brings with it a sense of understanding. It feels like every thing slows down. Much of the way I operate in real world changes. Even the tone of my voice changes.
Behaviors that once made me angry and "out of sorts" now make me chuckle. This might sound very odd -- sometimes Alzheimer's World is a very happy place.
I could give a long and detailed explanation of why I experience these feelings of child like happiness but I'll save that for another time.
The following is a description of how I started to envision Alzheimer's World and how it differs from real world. More or less, my early development of the construct that lead me to the conclusion that I needed to change if I wanted to communicate with my mother, Dorothy.
Alzheimer's World is difficult to understand and find. Some caregivers get there, some don't.
It takes lots of thought, hard work, and the development of a new mental construct of behavior to understand Alzheimer's disease. It takes time.
Take the relationship between my mother and me as an example.
I've known my mother my entire life. We have been communicating our entire lives. I would imagine that our communication is similar to most people. We engaged in all the human behaviors and emotions over the years. We established patterns on how to deal with the good and the bad.
Did I ever get angry with my mother -- of course. Frustrated, agitated -- of course. When we had a problem with each other we learned how to work it out. How to make up and reattach.
Over the course of 50 years we developed our own method of communication -- our own behavior.
Then Alzheimer's struck.
Our communication and the behavior changed. Abruptly, over night. It was if our ability to communicate effectively had been robbed from us.
I saw and understood these changes were being caused by Alzheimer's disease. On the other hand, my mother couldn't see the change. She couldn't understand what was happening.
When my mother would say something mean, or act out crazy behavior I experienced the same emotions I had my entire life. Anger, anxiety, frustration, and agitation.
Why wouldn't I? I felt the same exact feelings and emotions that I had been experiencing for 50 years. I had 50 years of practice.
Looking in from the outside, most people would conclude its easy to come to an understanding that the meanness and craziness are a direct result of the disease -- Alzheimer's.
They conclude you simply adjust and come to an understanding that Alzheimer's is the cause of the behavior, and as a result you can just shrug off the meanness and craziness.
This is far from the truth and the reality of the situation.
It is almost impossible to explain to someone how difficult this adjustment can be. How difficult? It took me years. Years while I was trying to do it day after day after day. Every day.
I finally made the leap when I started to develop pictures of the behavior, and finally came to some simple conclusions.
I had to change my mother couldn't.
I had to find a way to get into her Alzheimer's World, instead of trying to drag her back into Real world. I knew and understood she was never coming back to the real world. Never.
Here is how our life looked before Alzheimer's.
My mother had her life. I had my life. Our lives clearly intersected and we had all of our shared experiences stored in that intersection.
We had an understanding and frame of reference that we developed over our lives. We knew each other very well. We knew how to deal with each other.
After Alzheimer's struck, this is what our life looked like.
It was like we were two new and different people. I guess you could say, we had to get to know each other again.
I thinks its obvious that when you first meet someone it takes time to get to know them. Over a long period of time you get to know and understand them -- better and better.
In this particular case you have to get to know a person and deal with a person that is often mean, and often does things that make you angry.
You really have two choices. The first choice is easy -- walk away. Or, you have a second choice -- to learn how to love and care for someone that does things that normally would make you do what you would do in choice one -- walk away.
You have to choose. You can choose change and understanding. Or, you can try what I call the hamster approach. Run around the hamster wheel faster and faster, and get no where fast.
If you choose the hamster approach you'll most likely end up bitter and angry, or worse --depressed.
You are the one that must decide.
I finally came to the conclusion that before I could make the leap into this new world, I needed a construct of this new world.
I was coming to an understanding of what I wanted to do and how I was going to do it. In order to organize my ideas I also decided I needed a picture of what this might look like.
Here is a picture of I how I envisioned Alzheimer's World.
My mother is now represented by the red circle. My mother changed. Her brain is sick. She has Alzheimer's disease.
I am represented by the green circle. I learned that I had to change because it was impossible to change my mother. So green represents the new me.
The intersection of the red circle and green circle is yellow. The yellow intersection represents Alzheimer's World.
This is where I wanted to get too.
In order to get into the yellow I had to first accept that something had to change -- me.
Next I had to accept that the new behaviors my mother was engaging in were a direct result of her Alzheimer's disease -- her brain was sick. This allowed me to accept her as she (now) is.
Finally, I came to the conclusion that I had to develop an entirely new set of communications skills.
I had to develop communication skills that were designed to deal with Alzheimer's like behaviors. I call this part the developing of a new "mind set".
I had to get to a place where I accepted Alzheimer's like behaviors as the norm. This is one thing that makes Alzheimer's World very different. In Alzheimer's World you expect the patient to do things that are "out of the ordinary". Once you start expecting these behaviors they become a part of the new "normal".
You must come to an understanding that in Alzheimer's World the behaviors you are seeing are the new normal.
I also had to develop a new communication set so that I could talk to and reason with my mother.
I'll talk more about this as we move along.
My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 94 years old, has Alzheimer's disease.
We live our life one day at a time.
We life a large fraction of our life at the intersection of our lives best described as -- Alzheimer's World.
- Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
- What is Alzheimer's Disease?
- What is Dementia?
- What’s the Difference Between Alzheimer’s Disease and Dementia
- Communicating in Alzheimer's World
- Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients
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