ARR Readers Changed Our Lives

The word "Our" in the title refers to Dotty and me. The words "ARR Readers" refers to the Collective Brain of the Alzheimer's Reading Room.

By Bob DeMarco
Alzheimer's Reading Room

Bob DeMarco

There can be no doubt that the readers of the ARR changed our lives.

I started writing seriously here in 2008.

It all started when an influential member of the Alzheimer's community heard about me from a neurologist he knew in Delray Beach. The neurologist told him about some guy that has some wild and crazy ideas that no one else is thinking about -- and based on his mother it appears they work.

He was referring to my idea which was not backed by Alzheimer's research at the time that one of the most important things an AD caregiver could do to make a difference was to take a person who was deeply forgetful out and into bright light.

I knew it worked, I knew why it worked, and I knew that it was one of the main factors that made Dotty kinder and gentler.

What I didn't know for certain was if it would "really" work well for other AD caregivers.

So, I wrote about bright light. I suggested that caregivers open the curtains, open the blinds, seat the deeply forgetful person (DFP) next to a window with bright light, and make a concerted effort to get the DFP out and into the bright light as often as possible.

The first time I wrote about this I received several emails within days from readers telling me it worked, or was working as intended.

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The feedback only whetted my appetite. It convinced that I could do more with Dotty, and together we could continue to improve her quality of life.

Dotty was diagnosed in 2004. She was further along the timeline than I could ever have expected.

This is what Dotty looked liked back then.

Here she is in 2008.

And, here she is in 2011.

Take a good hard look at her face. Look at her facial muscles, and the look in her eyes.

Once I started writing in earnest on the ARR I found I was thinking more and more about Alzheimer's care, and often thinking in new and different ways.

The more comments we received here on the ARR, the more I thought about the major issues being confronted by caregivers The comments made me think. They made me think of new and better ways to accomplish my mission in life at the time - how to bring to Dotty the highest quality of life possible.

For those of you that know me, you know I believe in the use of bunkhouse logic to figure out solutions to problems. More often than not, the simplest solution works the best.

However, you must start by defining a problem, understanding its component parts, and then work on discovering the solution.

Poop, pee, urinary tract infections, challenging behavior, the list never stops growing. You solve a problem and you have two new problems. It takes time and patience, and intestinal fortitude to succeed.

Starting in 2010 people started telling me over and over - Dotty is looking better. I always examine a persons facial muscles when they talk. I was genuinely surprised by the look on their faces. They were really moved and in some ways mesmerized. They were genuinely surprised.

Me? I decided from day one that I would find a way. A way to defeat Alzheimer's. A way to dispel all the myths about Alzheimer's patients -- the deeply forgetful. I never doubted myself, and I never doubted Dotty. We were in it together.

I now understand that in some small way I am changing the lives of AD caregivers all over the world.

However, it would be more correct to say that "we", the Collective Brain of the Alzheimer's Reading Room, are changing the lives of caregivers all over the world.

One thing is certain. Without you I wouldn't be here. And, without you Dotty and I might not have accomplished what we did.

This place also provides a kind of support that is hard to measure.

No one has benefited from this support more than Dotty and me.

You changes our lives. And helped to make our lives better in a real and tangible way.

Thanks.

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Wednesday, October 31, 2012