Alzheimer's World is a wild, sometimes crazy, and backwards place. In Alzheimer's World words from an Alzheimer's patient are often a cry for help. Many times what an Alzheimer's patient says is exactly the opposite of what they mean.
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Does this person look mean to you?
The list of difficult behaviors that Alzheimer's patients express in the mid stage of the disease are long, and sometimes never ending.
I couldn't possibly list all of the mean and nutty behaviors my mother, Dotty, engaged in in those first few years of our life together with Alzheimer's. The list is just to long.
For this article I am going to focus in on one mean behavior: when my mother repeatedly told me to get out, she didn't need me, and she could take care of herself.
Many of you can probably imagine what it feels like when a person living with dementia tells you - "I don't need you, get out". Or, says something even worse than that.
So there I was. I had dropped out of the world to care for my mother, 24 hours a day, 7 days a week. Could she have said anything meaner, "I don't need you, get out."
These mean spirited episodes with my mother went on for years before they stopped. However, I was never deterred by her mean spirited behavior because I made a decision from the very beginning - I am going to put a stop to this.
So I tried everything in the book. I tried being overly nice - didn't work. I tried being overly positive - didn't work. I tried explaining why she needed my help - didn't work.
I told her if she didn't start accepting my help she would end up in a "home" - that did not work. In fact, it made things much worse.
I tried everything I could think of doing - it did not work.
Finally, I threw the book away and started thinking. And then it happened. I realized something had to change, and that something was me.
Pretty simple huh? Dotty wasn't going to change so it was up to me to change. To change the entire dynamic of our relationship.
Shortly after my realization that I had to change, I invented a new place I first called Dotty's World.
I started asking myself - why? Why does Dotty get so upset? What is happening that is making her upset? Is it me?
Yes, it was me. Okay, we had that out of the way. It was me.
Eventually I changed the name of our new world to Alzheimer's World.
Alzheimer's World was the place I would go to to better understand Dotty, and to better understand me.
At first, I found that it was difficult to change gears and get into Alzheimer's World. So, I actually started taking a giant step to the left when I needed to enter Alzheimer's World. To be honest, I couldn't get there without the step to the left. Just couldn't.
Next, I started taking notes in a spiral notebook. Every time Dotty would get mean I would write down what was happening before these episodes.
One thing stood out. Every time I left Dotty alone, shortly thereafter, she would get mean. "Get out, I don't need you, I can take care of myself".
It became obvious to me that I couldn't leave Dotty alone. I couldn't leave her alone for 30 minutes to go to the store. Or, for any other reason. This is pretty common in mid to later stage Alzheimer's. A person who is deeply forgetful cannot be left alone.
Yes, there were other cataylsts to this mean spirited and often bizarre and crazy behavior.
For example, if I would tell Dotty you can't do that. Or, if I would correct her and try to explain the errors in her thinking. Or, even if I would stop her from doing something.
Once I made it to Alzheimer's World I started looking at the world from Dotty's point of view. I looked at the world from her eyes.
Pretty soon I realized that the things that Dotty would do seemed very normal to her. I just looked at her while she did them and pretty much kept my mouth shut.
Pretty quickly, almost overnight in fact, I accepted that the things Dotty did were normal in Alzheimer's World. So, I stepped to the left to better understand.
In Alzheimer's World instead of getting all bent out of shape, I found myself marveling at the things Dotty would do. The things that Alzheimer's patients do are often fascinating. After all, their brain works differently that yours and mine. You have to start understanding the brain on Alzheimer's.
Now to my first major point. When Dotty said,
"Get out, I don't need you, I can take care of myself"
that is not what she meant. What she did mean is:
Don't leave me alone, I'm scared, please don't put me away in a home.
Yep, she was scared and, like it or not, I was the one causing the fear when I left her alone.
Simple solution, I stopped leaving her alone.
Once I realized that there was a very different meaning to Dotty's words in Alzheimer's World, I was able to develop better and better solutions to problems.
In this case, I didn't leave Dotty alone. But that is not all that I did. When she said "get out", instead of getting all bent out of shape and reacting back at her, I did the exact opposite. What did I do?
I smiled, walked over to her, put my arm around her, and calmly said, in a clear, low, confident voice,
I'm not going anywhere, we are here together now, and I am going to take care of you.
It took a while, but yes, it finally sunk into her brain.
Alzheimer's World is wild, sometimes crazy, a backwards place. I learned that in Alzheimer's World words from an Alzheimer's patient are often a cry for help. Many times what an Alzheimer's patient says is exactly the opposite of what they mean.
So I started meeting meanness with an equal and opposite reaction - kindness. Kindness, compassion, and understanding.
This is how you learn to cope with Alzheimer's. Understand, cope, communicate.
By the way, Dotty stopped telling me to get out.
In the last few years Dotty only told me to "get out" a few times.
I actually laughed when she said it. Not at her, more or less, really laughed at myself.
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Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room (ARR). The ARR Knowledge Base contains more than 5,000 articles. Bob lives in Delray Beach, FL.
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