Mar 22, 2014

Why Does Everyone Assume I Had No Life?

Well I can say this with a great degree of confidence: from what I saw, heard, learned, and experienced during my eight and a half years of taking care of Dotty I think I had a pretty amazing, rewarding life.

By Bob DeMarco
+Alzheimer's Reading Room 

I studied communication in college and graduate school. It turned out that that life experience helped to prepare me for a life as an Alzheimer's caregivers.

The initial challenges the caregiver faces include:

  • learning how to understand Alzheimer's, 
  • learning how to cope with a person living with Alzheimer's or a related dementia;  
  • and then, how to communicate with a person who is deeply forgetful.

For most caregivers this is the challenge of a lifetime. A challenge that is often willingly accepted.

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Most people conclude that when I dropped out of their world to take care of my mother, Dotty, that I had no life. It is true that my life did change dramatically.

However, I still can't understand why others conclude

"I had no life".

While caring for my mother, I had a life that was rich in spirit and more rewarding than most will ever imagine or experience.

Caring for my mother, and my life as an Alzheimer's caregiver, were part of my life. One segment of my still ongoing life.

I didn't mail in my life while I was an active Alzheimer's caregiver for my mother.

In fact, I was living my life with great energy and determination while I was caring for Dotty.

I didn't stick my head in the sand.

Instead, I reached down deep for the spirit within me for all the resources I needed.

In the New York Times, after interviewing me, Jane Gross wrote,
“I never read any of the books,” Mr. DeMarco said. “I just turned off the Bob DeMarco-businessman-decision-maker thing and enveloped myself in Alzheimer’s World.” He watched the “patterns” of what made Dotty calm and agreeable rather than agitated and negative. She was his “laboratory.” “Something has to change, and that something was me,’’ Mr. DeMarco said, and so he “rewired his brain” to match hers. See The Alzheimer’s Reading Room on the New York Times website.
That sums it up pretty good.

People still ask me almost every day, how did you do it? They still tell  me -- you had no life.

I can say this with a great degree of confidence: from what I saw, heard, learned and experienced  during my eight and a half years of taking care of Dotty I think I had a pretty amazing, rewarding life.

During the time while I was caring for Dotty thousands of people told me, you are a good son. To this day, when people learn of my great accomplishment they still say, you are a good son.

I must have been living my life well if I was a good son. I must have been doing something. Does hearing your a good son sound like -- you had no life?

So lets get this clear.

I had a wonderfully productive rewarding life while I was taking care of my mom.

What I want to know is, what were you doing?

Were you living your life, or were you just mailing it in?

Were the last eight and a half years of your life filled with challenge and accomplishment?

By the way, during my travels down Alzheimer's lane I  was never alone.

In fact, we had more support during the last 4 years of Dotty's life than I could ever have imagined. The wonderful support of many thousands of readers of the Alzheimer's Reading Room. Readers from all over the world.

So to those of you that think I did it alone let me clear that up now.

I think we, Dotty and me, had more support over a longer period of time than anyone ever had while dealing with Alzheimer's. And we had that support 24 hours a day, seven days a week.

How did I do it on my own?

I didn't do it on my own.

No doubt this is a place that is very full of loving support.

And noone understood that better than Dotty and me.

Related Content in the Alzheimer's Reading Room
Bob DeMarco
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 4,600 articles, and 349,000 links on the Internet. Bob lives in Delray Beach, FL.

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