Mar 20, 2013


I finally realized that what I had to do was ask myself "Why" in order to cope with and communicate with a person living with dementia.

By +Bob DeMarco
+Alzheimer's Reading Room 

Dementia care isn't easy. Caring for a person living with Alzheimer's or a related dementia is difficult.

In fact, it is one of the most difficult undertakings that anyone could ever imagine.

When Alzheimer's strikes the first thing that happens to most of us is we enter a period of what could best be described as "deep sadness". Some of us are able to overcome this deep sadness.

It is not easy to overcome sadness, confusion, frustration, anger and a sense of hopelessness.

For us, it is the challenge of a lifetime.

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While it was not clear to me at the time it is now - I stepped off the path of burden and on to the path of joy when I first started asking myself


I had to go through quite a bit for 18 months before I finally started asking myself why. But then at 1 AM in the morning on May 5, 2005 I had a moment of inspiration. I wrote on my da Vinci pad

Something has to change

and then

That Something is Me.

It took a few days to sink in and when it did I invented a new place called Dotty's World. After a bit I renamed this new and different place Alzheimer's World.

In order to get into Alzheimer's World, this new and different place, I realized I had to psychically take one giant step to the left. The door to Alzheimer's World was there all the time, it just took me a while to find it, to notice.

I had to take that step. It was the only way to get my brain to cooperate. I had to leave the deep sadness behind and get on with our new and different life.

It worked.

Once I made it to Alzheimer's World I realized that I had to do something new and different - I had to start looking at the world from Dotty's point of view.

In the beginning I had to ask myself over and over, Why? Why is she being so mean? Why is she engaging in behaviors that seem so bizarre and are making me frustrated and angry.


The single biggest thing that was bothering me was when Dotty's repeatedly said,

Get out, I don't want you here, I can take care of myself.

It hurt to hear those words. It hurt more than it might because I had dropped out of the world to take care of her - 24 hours a day, 7 days a week. Why did she say it?

Once I started taking some notes, and asking myself Why, I finally understood the dynamic.

Dotty's harsh words almost always came after she became confused; and when, she had somehow in her own way, in Alzheimer's World, concluded that I was going to abandon her and put her in a "home".  A home was a bad place, the one place that Dotty feared more than any other.

Dotty feared she would be put away and forgotten.

So Dotty wasn't really telling me "to get out", in fact, she was pleading with me to take care of her.

I finally knew why.

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One day I stumbled on to the solution to the problem. Dotty was yelling at me - get out. But before she could run off to her room, get in bed, curl up, and start whimpering, I put my arm around her, put my head on her head and said, I'm not going anywhere, I'm here now, I am going to take care of and protect you".

I actually said those words in a very low voice, and with a calmness that startled me once I had time to think about it.

It just happened.

This explains why Alzheimer's World is such a wonderful caring place. You don't get angry and frustrated. You get calm and gentle and kind.

Over time I realized that most of the bizarre behaviors that persons living with dementia engage in are understandable. But they can be hard to understand if you judge from a position in the real world. It won't and doesn't work.

Alzheimer's World is somewhat strange. It is a kind of upside down and backward place. Alzheimer's patients often say the exact opposite of what you might expect them to say. It is really amazing.

Alzheimer's patients often say No when based on their life experience you would expect them to say Yes. This is really frustrating. But less frustrating once you ask Why, and stop judging based on the past and that other place - real world. Did they really say No, or was it just the easiest word for them to say?

Dotty always said No. But in Alzheimer's World I found that while she was saying No over and over she would do exactly what I wanted to do if I acted as her guide - instead of as her boss.

So I learned to guide her.

Just so you know. Dotty did stop telling me to "get out" once I put my arm around her and reassured her. Odd it seemed at first.  I met her behavior with an equal and opposite behavior.

I learned to be kind and gentle.

Amazingly, once I learned how to meet bizarre behaviors cause by Alzheimer's with equal and opposite reactions (responses and behaviors) many of the problems faded away.

I became kind and gentle, and Dotty followed my lead. She became kind and gentler.

When I had problems dealing with or accepting a Dotty behavior I asked myself  - Why is she doing this?

I learned that most of the answers are available with a single step to the left, and the willingness to change and adapt to a very new and different set of circumstances.

Be patient.  Ask yourself -  Why?

Once you start asking yourself Why, you should be on your way to a better understanding of how to with cope and communicate with a person living with Alzheimer's.

Bob DeMarco
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized Influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. The Alzheimer's Reading Knowledge Base contains more than 4,000 articles, and the ARR has more than 343,000 links on the Internet. Bob lives in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room