Apr 15, 2012

Alzheimer's is Hard to Understand

Understanding Alzheimer's is about building trust and understanding with the person who is "deeply forgetful."

By Bob DeMarco
Alzheimer's Reading Room

When most people think about Alzheimer's or dementia they think about a person that can't remember.

This can be confusing because for a long time most persons living with dementia can talk confidently about the past, and their favorite places. This often causes a disconnect. It can also cause a diagnosis to be missed because many person living with dementia can function quite well.

There I said it. Can function quite well.

This morning I suggested to Dotty that she do some coloring. She said to me, I don't know how to do it. I answered, no problem, I'll help you get started. I'll lend you my brain. Dotty smiled and laughed. She also leaned over and put her head on my chest. Sweet.

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I get quite a bit of email from caregivers telling me that they know their loved one is living with dementia but they still get angry or upset when they say something mean, or engage in behaviors that seem bizarre when related to "real world" behaviors.

I understand how they are feeling. I understand because I felt the same way for a long, long time. My mother would say something mean to me that she had never said before. I knew it was the illness in her brain that was causing her to say these things. In spite of my knowing, I still got angry or upset. Sometimes I went back at her in the same way I would if you said something mean to me.

Keyword, me. When we relate to Alzheimer's we often make it about the Me in Me. How we feel. How we view the behavior. We try to relate the behavior to the world we live it. To understand from a real world perspective.

In order to understand Alzheimer's it is necessary to relate the words or behavior to the person that is saying them, or engaging in the behavior. It helps to look at the episode from the perspective of the person saying the words, or acting out the behavior. Why are they doing this? What are they feeling? What is causing the current episode?

When you begin to do this you relate to the person living with dementia and stop making it all about "me". Soon you will begin to relate the words and behaviors to Alzheimer's in a new and different way. This new way of relating will soon allow you to accept that many of the things that tend to make you angry or upset are a "normal" behavior on the part of person living with dementia.

Aha, a normal behavior. The norm. To be expected. These words, encounters, and behaviors are to be expected. They are in fact normal for a person that is living with dementia. They happen because their brain now works differently than yours and mine.

The brain has changed. This causes many people living with dementia to change. This change is hard and sometimes impossible to accept if you relate it to, or compare it to the way the person use to act and behave.

When a person lives with Alzheimer's or dementia they change. They change because their brain works in a new and different way. Many of these persons learn to function quite well under the circumstances. They adjust. This of course forces you to adjust with them. Adjust to the fact that in Alzheimer's World certain words, actions and behaviors are the norm, the normal.

By the way, persons living with dementia are not deaf. They might hear you when you are venting to a person on the phone, or to a friend. How would you feel if someone started talking about you like that? Keep in mind, the person living with dementia probably won't remember the behavior that you are describing. They might actually conclude that you are telling lies about them. Did you ever consider this?

Would you like a person that talked about you like you weren't there? That said things about you that weren't true. Not true because you couldn't remember doing them, so they never happened from your point of view.

Would you like a person that snapped at you when you asked a question? A question you believed you were asking for the first time, not the tenth time.

By now I think you get my point.

Alzheimer's is hard to understand if you spend all your time talking about how it effects you. It gets easier to understand when you start relating to a person who is living with dementia and listening to them while trying to understand why they are doing what they are doing.

Alzheimer's becomes easier to understand when you accept that the person living with dementia is the same person you always knew. But now, they have an illness. An illness you can't see. They change in a way you can't see with your eyes. Eyes.

Can't see unless you look hard and look beyond the obvious to see it.

Alzheimer's is not about the Me in Me in the caregiver. It is about the We and Us.

Understanding Alzheimer's is about building trust and understanding with the person who is "deeply forgetful."

More Insight and Advice from the Alzheimer's Reading Room
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.

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Original content Bob DeMarco, the Alzheimer's Reading Room