Saturday, October 20, 2012

The Alzheimer's Hamster Within YOU

One of the most difficult tasks an Alzheimer's caregiver faces is the development of a new set of communications skills. Sooner or later the caregiver needs to come to an understanding that the way they have communicated in the past, before Alzheimer's, won't work in a world filled with Alzheimer's disease.

By Bob DeMarco
Alzheimer's Reading Room
The Alzheimer's Hamster Within YOU
Change is difficult under any circumstance. It is even harder when you need to change something that you have been doing all day long throughout your life. 
Every Alzheimer's caregiver I ever met has talked about their need to vent. Venting is a good thing. You get the monkey off your back. However, at some point you need to make a decision to put that monkey in the closet and get off the hamster wheel. 
If you have gone years complaining about the same behavior over and over you must ask yourself, how do I change this dynamic?

Two of the behaviors that drive the Alzheimer's caregiver crazy are repeatedly hearing the same question over and over, and hearing mean spirited words. 
We all face this. In the real world when someone says something mean it usually starts an argument. Even if the person didn't really mean what they said. If someone engages in a behavior that you find unsettling, you will usually respond with harsh words or in a mean tone of voice. 
When an Alzheimer's caregiver responds harshly to someone suffering from Alzheimer's disease they usually regret doing so. This in turn makes them feel guilt and remorse. When you start living a life full of guilt and remorse it is likely that your whole world is going to turn negative. Negativity breads more negatively. 

One of the things that drove me crazy was when my mother would say over and over -- I'm hungry, I'm starving. Compare this to how many times she asked me what day is it, and I can tell you, this is like comparing a tornado to a rain storm in the way that it made me feel.
Of course, like just about every Alzheimer's caregiver, I would respond by trying to tell my mother she just ate, or maybe say something even worse (the correct word here might be dumber). 
I knew I had to do something. I understood that I had to change. I understood that I would need to develop an entirely new set of communication skills. I knew it wouldn't be easy, and it wasn't. It took years, and I a still working on it. 
In the article Communicating in Alzheimer's World, I discussed how I started building a new model of communication to better understand Alzheimer's.
Today, I am going to discuss how I developed a simple Imagraph (image/graphic) that allows me to switch seamlessly from communicating in real world to communicating in Alzheimer's world in an instant. 
This is how I got myself off the Alzheimer's Hamster wheel. 
It all started when I started thinking of myself as a hamster. No matter how hard I tried I couldn't stop communicating in a way with my mother that only made matters worse. When I made matters worse, my mother would go into her room and curl up into a ball in bed. I would go out in the living room, and I took my stomach ache with me. I would just sit there and feel worse and worse. Unlike in the real world, where you might be able to apologize or reason with a person and dismiss the bad feelings, this rarely works in Alzheimer's world. 
I just kept thinking to myself, I am like a hamster on a hamster wheel. I kept running and running until I got exhausted and when I was done, I realized I went no where fast. Over and over, I went no where fast. I just couldn't accept this and I wanted to change. 
When it would all start, the meanness, the repeating of the same words over and over, I would bring up the image of the hamster on the wheel in my mind. If you read the comics and you have seen those clouds over the head of the character with the the words in them that is how I did it. I just imagined that cloud with the hamster right above my head. I saw the hamster running and running around the wheel. Going no where fast. 
After a while, I changed the Imagraph slightly, instead of the hamster running on the wheel, it was me running on the wheel. There I was, right above my head going no where fast.
And then it happened. I brought up the hamster that was me in the cloud and my communication changed. It was subtle at first, I had finally convinced myself that I didn't want to be a hamster any more. I guess you could also say, there came a time when I refused to be an Alzheimer's hamster. 
I bring up my Imagraph whenever I need to, and I then cross coolly and calmly into Alzheimer's World. I am not bent out of shape, I am not feeling those uncontrollable emotions. Instead of acting just like my mother, I get calm. Very calm. I speak in a low, confident voice. I bring her around slowly but surely. Although, I sometimes think it is me bringing me around slowly. 
The bottom line, I take control of the situation instead of allowing the situation to take control of me over and over and over. 
I believe changing behavior, understanding what is happening, and a willingness to change the communication dynamic are the first steps to Alzheimer's caregiver happiness. 

You can read my previous articles to get a better understanding of how I changed the communication dynamic and learned how to communicate effectively in Alzheimer's World.
If you are an Alzheimer's hamster right now, don't feel bad. There are about ten million Alzheimer's hamsters, or X-hamsters wandering around in the world right now 
Here is the good news. You are the ONE that gets to decide. Stay on, or get off the wheel. The hamster has no choice. You do.