Jan 17, 2012

I Forgot My Mother Has Alzheimer's

In Alzheimer's World, Dotty is the person I always knew, and when I started treating Dotty like the person I always knew, she rewarded me by becoming kinder, gentler, and more cooperative.

Bob DeMarco
Alzheimer's Reading Room

Bob DeMarco
If you want to get some good insight into how I rewired my brain and became a more effective Alzheimer's caregiver I suggest you take the time to read these two article: Alzheimer's and the Wiring of My Brain, and Rewiring My Brain and Stepping into Alzheimer's World.

I'm not sure when I started to forget that Dotty lives with Alzheimer's.

Maybe it started when I first read about an Alzheimer's caregiver that said -- "this is not the person I knew". Frankly, and for some reason, I can't understand why a person comes to that conclusion. Don't get me wrong, I understand it is not up to me to tell another person how to think or feel.

After I read those words, I looked over at Dotty and thought, that's Dotty. I can see her so she must be the person I know. Back in those days Dotty was very different than the person I knew before her brain fractured. She was mean and confused.

When did Dotty start changing back into the person I always knew? Did it start after I forgot that Dotty suffers from Alzheimer's?

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The first thing you need to know about me is that I don't have time, nor do I care to think about the bad stuff. I mean it is just easier to think about the good stuff. I can't understand how people think negatively all the time. I mean it is just so hard to think negative thoughts. So taxing. I don't think I could do it.

Thinking good thoughts is like eating a nice delicious piece of chocolate. Very pleasant. I guess this explains why I am addicted to chocolate.

Maybe I started to forget that Dotty had Alzheimer's when I decided I would try and become the best Alzheimer's caregiver I could be. That was an easy decision by the way. I thought, I am going to be doing this for a long time, so I'm gonna try and be the best. Pretty simple logic if you ask me. I mean if you are going to do something why not do the very best you can.

Maybe I started to forget when I first realized that Dotty was capable of doing more than I could imagine. For sure, this helped me decide that we would start living our life. This in turn forced me to focus on what we could do, not on what we couldn't do. Since I had to spend so much time thinking about what we were going to do, I didn't have much time to think that Dotty had Alzheimer's. For sure, I started to forget.

Maybe I started to forget the day 88 year old Dotty jumped on an exercise machine in the gym. All by herself, jumped on the chest machine, and started doing the exercise. Wozo edwards. I definitely stopped thinking about what Dotty couldn't do, and started imagining all the things she could do. I suppose this is when I started to forget what she couldn't do.

One night, I was up in my Bunkhouse with my da Vinci pad and I thought, something has to change. What?

The something that had to change was Me -- Communicating in Alzheimer's World.

The very next day I took my first giant step to the left, I went right through the invisible door and stepped into Alzheimer's World. If Dotty wouldn't come to me, I would go to her. I finally made it to Alzheimer's World. And once I made it I could say with great confidence, this is the person I always knew.

Hello, Dotty. I started to forget.

I started thinking, hmm, what can Dotty do?

Little by little I started to figure it out. But, only after I started taking that giant step to the left and right into Alzheimer's World.

I wanted Dotty to drive one of those motorized carts around Walmart. She had always refused to do it.

On this day of change in Me, I didn't even bother to ask. I went into Walmart, got the motorized shopping cart, and drove it right out to the car. I opened the door and helped Dotty get in the cart. She didn't like it, wouldn't look at me, and basically was "pissed at me". I showed her how to operate the cart and away we went. Did you ever try and drive one of those things. Easy to drive, slower than a turtle.

Every time Dotty drove the cart, I would tell everyone that would listen how great Dotty was at driving the cart. Then one night Dotty was on the phone and asked me, what did we do today?

I answered, we went to Walmart and you drove the cart. And then it happened, Dotty started to laugh and smile while she bragged to my sister Joanne how great she was at driving the cart. Dotty was really proud of herself. But, not as proud as Me. I definitely started to forget that Dotty had Alzheimer's.

What happens when you forget?

Here is a very simple example. One day, Dotty asked Joanne to help her get her Volkswagen Beetle fixed. What the heck? No one had seen that Beetle since 1982. Now before I forgot that Dotty has Alzheimer's, if Dotty had asked that question, I would have gotten bent out of shape. Not now.

I am now a citizen of Alzheimer's World.

When Dotty asked about the VW Beetle, I needed to know and understand where that question came from? After some thought, I realized that earlier that day we had seen a brand new Volkswagen Beetle and Dotty said, I want to buy one of those cars to drive for myself. So there is the thread to the story. I also learned something important. Dotty still thinks. Yeah, the pieces are all over the place in her brain, but there are still pieces.

Recently, Dotty started to tell Joanne how her cousin Anna had moved far far away and how sad that was. I thought where the heck did that come from? I found out the next morning. Dotty had a fifteen year old greeting card with a note in it from Anna. I caught her reading it. In the card Anna told Dotty how she was moving from Florida to North Carolina to be near her daughter. There is the thread. Dotty just organizes the pieces of the puzzle in her brain differently than we do, and often comes to a conclusion that seems nonsensical outside the World.

When you make it to Alzheimer's World all the crazy stuff is now the normal stuff.

The "norm". Instead of venting, you start wondering why? How? Pretty soon you forget that the person has Alzheimer's. Once you forget you can start living your life.

Now don't get me wrong. I know Dotty lives with Alzheimer's. I also live with Alzheimer's. I choose to live a large fraction of the time in Alzheimer's World. I am now use to it. So I guess you could say, I forget when I am in there.

Now I know some of you might think I'm nuts. It is okay, I don't mind.

I made it to Alzheimer's World. Oddly, the same behaviors and actions that made ME feel bad and bent out of shape at the beginning, now make me laugh and smile. I changed.

When I am in the World, I forget that Dotty has Alzheimer's.

In Alzheimer's World Dotty is the person I always knew. Sure, her brain is sick. But, once I started treating Dotty like the person I always knew, she rewarded me by becoming kinder and gentler and more cooperative.

Oh Dotty does engage in behaviors and actions that might seem "nuts" to most people, but not to me.

I chose to forget. I decided to change.

Although I never could have expected this, Dotty changed along with me.

Dotty is not the only one. I'm not the only one either.

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Original content Bob DeMarco, the Alzheimer's Reading Room