Jul 29, 2015

Dementia Care, Do You Need to Change?

I thought I had changed. But, it wasn't until I had my great epiphany, of sorts, that I found a way to cope and communicate effectively with a person afflicted with dementia.


By now many of you have heard me say:

Change is an important aspect of effective dementia care.
By Bob DeMarco
Alzheimer's Reading Room

It took me 18 months of trying to figure out how I could best deal with my mother before I came to the conclusion that I had to change. It finally happened at 1 AM on May 7, 2005.

Prior to my revelation and new inspiration I was already convinced that I had changed.


The issue. If I had (in fact) changed and accepted Alzheimer's, why was it that I was "bent out of shape" most of the time.

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Why was I so angry, frustrated, and so frequently confused not only by the behavior of my mother; but also, by my own behavior and reactions.

Why couldn't I get a grip on the situation?

Part of the problem I was confronting was - that I knew my mother my entire life. As a result, I had come to expect certain things from her. We already had a well established way of communicating, and dealing with each other.

Then the rules changed.


My mother started behaving differently. And, this often odd, often different way of acting, was clearly strange, bizarre, and foreign to me. In other words, the behaviors we see and feel from persons afflicted with Alzheimer's are often disconcerting, frustrating, and often result in an angry reaction.

The typical paradigm: confusion, frustration, leading to the blow off - anger.

I finally realized I had to change. This meant that I had to start looking at the world from my mother's point of view. In other words, start looking out of her eyes and try to understand how she was thinking and feeling.

Wasn't that what I had being doing all along? Well, I thought that was what I was doing - changing, trying to understand and cope.


As it turned out, I finally realized I was not changing at all, and my inability to change was causing much of the angst and anger we seemed to experience each day.

After my epiphany of sorts - my sudden and striking realization - that something had to change, it finally dawned on me that I would never be able to change within the confines of the past - the world as I knew it with my mother.

This lead me to invent Dotty's World which soon became know as Alzheimer's World. I guess you could say that Dotty and I started all over at the beginning in Alzheimer's World.

In Alzheimer's World the same exact behaviors that made me angry and confused in the real world often made me smile or laugh.

Instead of getting "bent out of shape", I was actually dealing with the "expected". Instead of seeming bizarre to me, the very same actions and behaviors seemed, well, you might find this hard to believe "fascinating".

The key here, I stopped blaming my mother, and then I stopped blaming myself for my reaction. That is what I did in real world.

In Alzheimer's World, the new place, instead of blaming my mother for her actions, I started to wonder, why does she do that, what is going on in her brain?

What is it she trying to accomplish? What is the real meaning behind her actions and words?

Amazingly, in Alzheimer's World the same exact actions and behaviors that were driving me "nuts" took on new meaning.

Now to my point.

It took me 18 long months to realize I had to change. And keep in mind I was a full time caregiver so I had a lot of time to think about it. So if you are having problems coping and communicating stop whacking your loved one and yourself over the head. Stop blaming.

Start anew. Go to a new place and accept the changes. Keep in mind your loved one is still a living breathing person that is full of emotions.


Here is the best part. Once you get the hang of operating in Alzheimer's World you will get a very pleasant and unexpected surprise.

Your loved one will come back and start joining you from time to time in the real world.

Don't believe the bull that they say out there, Alzheimer's patients are capable of more than we can imagine. Start treating your loved one the way you always did -- and then see what happens.

As many here have already learned, Alzheimer's patients can be interesting and fascinating.

Give it a shot and then you will see what I see.

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