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Thursday, April 19, 2012

Something Had to Change


... and that Something was Me.


Something Had to Change

I'm sitting here trying to decide what I am going to say, what I am going to speak about next week in New York. I'll be speaking on April 25th at Pace University, and at the SEEING ALZHEIMER’S DIFFERENTLY SYMPOSIUM.

I have a lot to say and it won't difficult to speak for 20 minutes. My problem right now is deciding what I can say that will have the most beneficial impact on the audience.

Here is a description of the session -- Dialogue 1: Richard Taylor and Bob DeMarco: “Caring for Yourself, Caring for a Loved One: Adopting a Positive Mindset”.

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Adopting a positive mindset. I have a good idea of how I rewired my brain over time. I know how I did it.

As I think about this, I am also reminded of the enormous amount of negative feelings and thoughts I had before I found the path to joy. The burden when you receive the verdict, dementia, is enormous.

The feeling of hopelessness, grief, denial, confusion, the list goes on. The new, bizarre, and unsettling behaviors. Your world is literally turned upside down and backwards.  I remember.

I am also remembering the day Dotty taught me for the first time that there is more there. I am also remembering that she didn't smile or laugh for 2 years. Ouch.

My personal breakthrough came in force at 1 AM in the morning when I wrote these words on my da Vinci pad,

Something Has to Change

and then shortly thereafter,

That Something is Me.

Those words started to life the burden.

I didn't really know at first what I was going to do. I just knew I was going to change my entire approach.

Instead of making it about me, I understood it was about Dotty. I started listening to her. Instead of obsessing over her strange, bizarre, and often confusing behavior I started wondering, what is she feeling, why is she doing this? How does she feel right now?

Then one day I made the one big giant step to the left. I entered Dotty's world. The same words, the same actions, and the same behaviors that were making me feel bad all of a sudden seemed natural. Normal. Eventually I started calling this new place Alzheimer's World.

Let me make a point here. Some people think you can get lost, or something bad might happen if you go into Alzheimer's World. You can't catch Alzheimer's. You are not leaving the real world, in Alzheimer's World you are understanding Alzheimer's and how Alzheimer's changes the brain of the person living with Alzheimer's. You willingly enter their world and accept them. Acceptance.

If necessary you can always take a giant step to the right to leave Alzheimer's World. But lets make this simple. Once you find Alzheimer's World, once you begin to listen and understand, you can move back and forth between AW and the real world seamlessly.

So the process of rewiring my brain started when I decided I had to change. Before long when Dotty would start doing something nutty, instead of stopping her, I let her do it. I often stood their fascinated. I wonder why she does that? I found myself laughing, and chuckling, at the same exact behaviors that were driving me crazy.

Once I started to understand what was happening and why, I was then able to change the way things were. Slowly but surely, one day at a time. One by one, I substituted new and better behaviors for each of those unsettling behaviors.

In a nutshell.
  • Dotty first taught me there was more there when she jumped on a exercise machine in the gym - all by herself.
  • I decided we would start living our lives. Dotty and me.
  • I learned that something had to change. That something was me.
  • I learned that when I changed, so did Dotty.
  • I learned that by accepting these new, often bizarre behaviors, they became the normal.
  • I learned that by instituting new patterns of behavior, a routine to our life, that many of the bad things went away. We were too busy living our life.
  • I learned how to understand, cope, and communicate with a person living with dementia.

Along the way, I forgot some things. I forgot that Dotty has Alzheimer's. I stopped trying to help her to remember. Instead I learned that she was deeply forgetful. I decided to lend her my brain when necessary.

I learned how to think positive (relearned actually).

I chose joy over burden. Although I freely admit I didn't know I was doing this for many many years.

I believe we beat Alzheimer's. And I know we are survivors in spite of what they say.

I know that Dotty is going to die some day. In the meantime, we will continue to live our life one day at a time. I'll keep trying to figure out what we can do, and how we are going to do it.

I know now that I am not the only one that changed.

Right here we have thousands of caregivers that strive each day to bring the highest quality of life to a person who is deeply forgetful.

We change. We learn. When we come to the fork in the road labeled - Burden or Joy - we choose joy.

On the Alzheimer's Reading Room I learned that the typical Alzheimer's caregiver wants to change. They want to bring the highest quality of life to their situation. To their day.

So now all I need to figure out is how to best communicate in a short period of time how you rewire you brain and get on the "right path".

If you have any advice. If there is something you think I should say while I am speaking. Please add your thoughts in the comments box below this article.


Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,461 articles with more than 397,100 links on the Internet. Bob lives in Delray Beach, FL.