Oct 19, 2016

Alzheimer's Care and Learning How to Trust

“I know God will not give me anything I can't handle. I just wish He didn't trust me so much.”
-- Mother Teresa

Learning how to trust is an important component of dementia care.
By Bob DeMarco
Alzheimer's Reading Room

Dotty was known for telling some pretty tall tales. Wild and crazy stories that were loosely based on facts.

When Dotty first started doing this I couldn't wait to correct her, or tell the person she was telling the story too, it didn't happen. I needed to do that.

After I realized I had to change, and to stop making everything about me, I stopped doing that.

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Once I learned to listen, rather than correct, I soon realized that Dotty's tall tales where usually based on the on truth that was stuck in her mind, and then on whatever information she could pull from various parts of her brain to make the story understandable. Understandable for herself.

For example. For several years Dotty told anyone that would listen that Billy (my brother) had come to Delray Beach, came into the condo, looked around and left. This story by the way took place on Christmas day.

Now this story was a little crazy for the following reason. Billy lives in Philadelphia, about 1250 miles from Delray Beach. Would he fly to Delray Beach look around and then go home? Doubtful.

Nevertheless, my mother told her best friends this story and they believed it. Some asked Dotty, why did he leave? This lead to a part of the story I didn't like. She blamed me. In other words, she told her friends I said something to him he didn't like and he left. It was my fault.

This lead Dotty's friends to ask me, what happened, what did you say? I asked them, does it make any sense that my brother would travel 1250 miles and then turn around and go straight back home? Of course they would answer no. I would then explain, there you go, it never happened.

This would leave my mother's friends perplexed and confused.

I would then inform them, one by one, that it never happened, Dotty made the story up. Mainly they would just shake their head. Keep in mind these were the same people that also believed Dotty when she told them, I was starving her to death and wouldn't give her anything to eat.

Back to Billy. Here is what actually happened.

Billy called my mother on Christmas day and talked to Dotty on the telephone. Later in the day Dotty remembered she talked to Billy but that was pretty much it. I guess her brain told her she talked to Billy in person right here in our home.

If that was the case, where was he?

To make sense of this I suppose Dotty's brain told her, he went home. Then when someone asked, why did he go home, her brain told her the only reasonable explanation, because he didn't like something. Turned out, that something was me.

Here is an interesting fact. Dotty continued to tell this story for years. Sometimes to my sister Joanne, sometime to a friend. In fact, she must have told that story to Joanne alone about 10 times over the years. However, in the modern day story when asked why he went home Dotty answered, I don't know.

Aha, she no longer blamed me. Maybe this is just the way it is. Or maybe, Dotty now trusted me, so she didn't blame me.

Dotty continued to make up and tell stories loosely based on fact. Over time these stories fascinated me. I say fascinating because of the look on the face of the person she was telling them too. They looked really fascinated and mesmerized by her tales.


Unless they asked, I let them go right on believing every word she said.

Why not?

Dotty believed what she was saying to be true. I no longer felt the need to correct her.

In Alzheimer's World, Dotty's stories are true. Dotty believed them to be true, so they were true. No, Dotty was not lying.

In the beginning, I needed to correct Dotty when she told a story I knew was not "correct". I suppose I needed to show I was in control. I allowed the real world to dictate my words and actions, to correct a story that was untrue to me.

Once I started looking at the world from Dotty's point of view, and starting thinking about why Dotty was doing certain things or engaging in certain bizarre behaviors,

I no longer needed to try and change what was.

I learned to listen to Dotty for clues to what was happening in Dotty's brain. I learned to accept what is. Is versus Was.

One of Dotty's very best stories was about how she was 95 years old and had never taken any medication in her life. When she told this story to someone that did not know her, and she told it all the time, you would have been amazed by the look on the face of person listening to Dotty. They were truly fascinated and mesmerized by her. They thought it was a miracle that a 95 year old didn't need any medication. By the way, I no longer felt the need to tell them Dotty was living with Alzheimer's. I got over that also.

In the beginning, I would immediately correct Dotty. And then end up feeling miserable. Correction, we would both end up feeling miserable. What was I accomplishing by being so mean? Nothing. I stopped being mean.

I learned to just let the stories fly while I listened in. It never ceased to amaze me how Dotty's tall tales were so believable. More believable and more interesting than the truth.

I finally became an observer and listener; and when I did I ended up feeling happy, sometimes elated. Not sad, or confused.

After all, Dotty was using her brain and extracting information from her brain.

This showed me there was something going on in there. 

I concluded that Dotty was still using her brain. The tall tales were really quite good, most of the time. It felt a lot better to think of it this way; then to have an incessant need to correct her. Instead of being mean I found myself laughing and feeling happy.

Now to my point.

Once I started trusting and listening to Dotty, she started trusting and listening to me. I know to some people that might sound impossible. It is possible.

Yes, when this all started Dotty was mean, moody, paranoid, often dull, and was stressing me out like there was no tomorrow.

Over time she became kinder and gentler. I became kinder, gentler and more understanding.

I know that some people think that Alzheimer's World is a bad, chaotic kinda place. A place that can drag you down. Let me tell you, you can't catch Alzheimer's and you can't get stuck in Alzheimer's World.

Me? I think Alzheimer's World is a kind and gentle place. I know one thing for certain, I was a lot happier after I found the world, then I was before I found the World.

The key here, I learned to trust Dotty, and then she started trusting me.

Trust = Reliance on the integrity, strength, ability, surety, etc., of a person or thing; confidence. Confident expectation of something; hope.

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