Saturday, April 12, 2014

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


There can be no doubt that the readers of the Alzheimer's Reading Room 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.

The neurologist told him about some guy that had some wild and crazy ideas about Alzheimer's care that no one else was thinking about -- and, based on this his mother was doing better than what might be expected.

That some guy was me.

The doctor was referring to my idea, which was not backed by Alzheimer's research at the time, that one of the most important things an Alzheimer's 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 Alzheimer's 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. The first time around she scored a 19 on the MMSE.

This is what Dotty looked liked in  2005.


Here she is in 2008.


And, here she is in 2011.


You can click on each picture to get a better view.

Take a good hard look at Dotty's 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 learned 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.

I also started thinking more and more about how I could improve the lives of Alzheimer's and dementia caregivers around the world. A natural extension of the mission.

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.

Alzheimer's and related dementia are very complex. This complexity seems to overwhelm us.

Amazingly, the solutions to the problems that come with the disease are often simple. You have to keep it simple so the person who is deeply forgetful can understand you. Dementia patients like simple; and they react well if you give them a chance.

At first, you must start by defining a problem, understanding its component parts, and then you start working on and implementing the solution. The best way to do this is to look through the eyes of a person who is deeply forgetful, not at them.

Problems. Poop, pee, urinary tract infections, challenging behavior, the list never stops growing. As Alzheimer's evolves within a person new problems arise. It is a continuous cycle - new problems.

It takes time and patience, and intestinal fortitude to succeed as a caregiver.

One of the most important thing I learned in the Alzheimer's Reading Room is that there are wonderful, kind, caring caregivers all over the world.

These wonderful people discover, one by one, how to bring the highest quality of life to a person living with dementia.

There are many millions of us.

Back to the three pictures up above.

Starting in 2010 people around us started telling me over and over - Dotty is looking better.

These people, our neighbors and friends, were genuinely surprised by the look on Dotty's face. They were really moved and in some ways mesmerized by Dotty. They were genuinely surprised.

Among others things they said she seemed happier, and looked younger.

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 came to the understanding here that in some small way I was changing the lives of caregivers all over the world. I hope everyone understands the positive changes you brought to us.

The word  we here refers to the  Collective Brain of the Alzheimer's Reading Room.  We are changing the lives of caregivers all over the world, one by one.

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 provides a kind of support that is hard to measure. How else can you explain how much we care about each other, even though most of us have never met in person?

No one benefited from the support more than me. I would say Dotty was a close second.

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

Thanks.

Note: I first published this article five months after Dotty went to Heaven. I changed a few things today, and put it back up. Almost two years after Dotty's death I am still thinking about Alzheimer's every day. I continue to better understand the dynamic, and I am getting better and better idea about how to best attack the problem face by caregivers.

More than 5 million people have visited the Alzheimer's Reading Room.

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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. Bob lives in Delray Beach, FL.

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