Feb 23, 2012

Bob DeMarco and the Alzheimer's Reading Room

I know and understand what an Alzheimer's caregiver can and will accomplish. I know how hard it is to get started. I was in the same place that almost all of us are in at the beginning. I didn't know anything.

By +Bob DeMarco 
+Alzheimer's Reading Room

Bob DeMarco, Alzheimers Reading Room
Bob DeMarco
Jane Gross wrote about me in the New York Times. Today, I noticed that Debra Bendis wrote about me in The Christian Century -- Bob DeMarco lays down his life.

It seems that people are interested in learning what my life is all about. Well, this phase of my life, the Alzheimer's caregiver, Founder of the Alzheimer's Reading Room part of my life.

When I read about myself I kinda scratch my head. I can't say I feel the way I might be being portrayed. I am interested and intrigued though. And, I suppose this is going to happen again, and maybe again.

If you want to know the truth I was hoping that someone out there like 60 Minutes or Nightline would do our story. I say our story because I think the big story here is about Dotty. If someone doesn't do it soon, its gonna be too late. Oh well.

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I ask my friends to read the articles being written about me. They say the articles are good. Positive.

But, I have to ask myself, why do people think I am making some kind of enormous sacrifice? Look, I am just some guy doing what needs to be done as it pertains to Dotty. I'm not one in a million, I am one of millions.

I have to admit some of the things I hear people say about me are amazing. Jean Prater told Katie Couric, "Bob DeMarco is a saint". Saint Bobby. Here is the thing. Jean never told me that in person.

I have been told to my face, and sometimes as people walk away, he is an angel, a good son, and unique. Good son, I hear that most often, I learned to accept those words.

Jane Gross wrote:
As sole proprietor of his blog and sole caregiver for Dotty, Mr. DeMarco doesn’t have what most of us would describe as a life. He says he has no friends, and doesn’t go to the movies or out for a meal except with his mother.
I think I unintentionally mislead Jane.

I have lots of friends, like Jim and Ruth and Josephine. It is true many of my best friends did fade away. I think that is probably my fault, not theirs. I started ignoring them. Not intentionally though.

Way back when, I think they were getting tired of hearing me vent. If truth be known, I got tired of hearing me vent. So I stopped. My friends went on with their lives, and I focused on the task at hand. Not to worry though, they will still be there for me in the future.

Quick clarification. Last night I went out to dinner with Jim, Ruth, and Dotty. It would be more correct to say that I don't go out to eat with Dotty alone. If Dotty and I go out by ourselves we go to places where I can talk to other people. See the Banana Boat for an example.

Thanks to Debra Bendis, she picked up on a comment I made in reference to my life and opened her article with a quote from me:
"I have a life that is rich in experience, and is now rich in spirit."
Please understand, I am not under an enormous burden, I am not living under a rock, and my life is not over.

Now to the Alzheimer's Reading Room.

Once again we are experiencing a surge in growth. We have more than 9,000 subscribers and that number is going up faster than it ever has. Consider this. In the last 30 days we had more than 45,000 unique visitors come here from Google alone. That compares to 15,900 for the same period one year ago.

Few people know how this place got started.

Back in 2007, I was throwing up an occasional article that I though might be of interest to Alzheimer's Caregivers. Then I wrote the first versions of Are Alzheimer's Caregivers the Forgotten?, and The Front Row. Some people that were active in the Alzheimer's community somehow found those articles via search and started to email me and asked me to write more. So, I did.

Tony Polk came long in July, 2009, and really put me in focus. He basically told me to write more about what I was doing, and more about Dotty. So, I did. Once I started doing that the word spread like wild fire in support groups all over the world.

I have to admit it does get pretty wild. One of our readers went to Kenya, and then sent me an email. He wrote, "they know about the Alzheimer's Reading Room in Kenya". In the last 30 days we had at least one visitor from 139 countries. Alzheimer's is everywhere.

There are more than 3,000 articles on this website. We have the best collection of content about Alzheimer's disease and dementia in the world.

It would not be incorrect to say we are the Field of Dreams of dementia. We built it and they came, and they are still coming.

I use the word we for a simple reason.

I have always considered the Alzheimer's Reading Room to be a collective effort. A collective effort of the Collective Brain of the Alzheimer's Reading Room. We now have writers that contribute and we also have readers that comment.

I continue to believe that the comments are the life blood of this website. You might not know this but new readers come into old articles and they read the comments. The comments often empower new Alzheimer's caregivers. They learn they are not alone, and they learn that the problems they are encountering are not unique to them.

Collectively we put new caregivers on the road to joy. We help "lift the burden" so that they can get on with the task at hand.

As it turns out, I put an enormous amount of effort into the ARR. Fortunately, I now have Harvey and he helps me by entertaining and interacting with Dotty.

As a result of the ARR, I have received more than 6,000 direct emails and 30,000 comments. This leads me to believe that I know more about how Alzheimer's caregivers think and feel than any other person on this planet. I know how we feel and I know what we need.

I know and understand what an Alzheimer's caregiver can and will accomplish. I know how hard it is to get started. I was in the same place that almost all of us are at the beginning. I didn't know anything.

So if there is anything that makes me different it was a determination to put caregivers on the road to joy.

This is what I am doing right now. I'm not lonely. I'm not alone. And if truth be known, I am accomplishing more right now that I could have ever imagined.

Does that sound like some guy that is living under a rock?

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 3,361 articles with more than 397,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room