Mar 6, 2012

ARR Readers Respond to Email Forwarding, My Repsonse

One of the most important things I learned is that I should never underestimate the Collective Brain of the Alzheimer's Reading Room.

By Bob DeMarco
Alzheimer's Reading Room

Simply, thank you.

Yesterday I wrote, Why Don't The Emails from the Alzheimer's Reading Room Get Forwarded, the comments are fascinating. The comments are educational and enlightening. New comments are still coming in.

Let me start by saying first and foremost, I am an Alzheimer's caregiver. Because of this, I have a good understanding of how dementia caregivers think and feel. I still remember feeling confused, powerless, and disenfranchised.

I continue to feel each day how difficult it is being a dementia caregiver. I experience the same emotions that most Alzheimer's caregivers experience.

The primary goal of the Alzheimer's Reading Room is to educate, sometimes entertain, and empower Alzheimer's caregivers. Empower is the key word.

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I started writing more seriously, here, because members of the Alzheimer's community asked me to share my insight, feelings, observations, and life with Dotty.

So far there are more than 30,000 comments on this blog. In addition, I received more than 6,000 emails that I can account for.

Many of the emails say, "thank you for creating this website". Others talk about how "they feel abandoned by family and friends".

Many readers come here feeling "lonely or alone". Many new readers learn that the problems they are facing "are common to many of us". This does help them understand and cope.

There are many thing about Alzheimer's caregiving that disturb me.

For example, I know that a person that is lonely or feeling alone is at risk for depression. About 40 percent of caregivers suffer from depression. I believe that we, the Collective Brain of the Alzheimer's Reading Room, are helping many avoid depression. Frankly, we are their life line, they are our life line.

I am disturbed that many Alzheimer's caregivers feel abandoned by family and friends. I want to do something about it. I know you do also. This is one reason why I wanted to learn how the information we have here is being shared.

We won't "wake up" family and friends unless we educate them. Maybe if they read the articles published here, and the comments under the articles, the comments of real live AD caregivers, maybe they will "wake up. We can only try. We are trying. We can try and lead them to water, it is up to them to drink.

I wrote the article, Why Don't The Emails from the Alzheimer's Reading Room Get Forwarded, for a specific reason. I wanted to better understand why more caregivers aren't sharing the information here. Well, I learned the information is being more widely shared than I might have imagined. I learned. You educated me. The comments for me are wonderful and eye opening.

As I said, I am an Alzheimer's caregiver. I know what it is like to live in the front row, I know what it is like to be forgotten.

There are more than 3 million AD caregivers searching for information on the Internet right now.

While I understand that the Alzheimer's Reading Room is not for everyone, I want every single AD caregiver in the world that can benefit from what we are doing here to find "us". I do get frustrated when I read an email that says, "I wish I had found the ARR sooner", "I wish I had the ARR when I needed it most".

I want every AD caregiver in the world to find us. I know this is an ambitious goal. Some people might think it is unrealistic. This won't stop me from discovering a way to get them here. I won't stop trying.

Let me make this clear. When I use the word "us", I am referring to each and every one of us collectively, each and every reader, each and every subscriber. I am referring to the Collective Brain of the Alzheimer's Reading Room. We have each other. I believe we need each other.

Let me make the issue of your email address and Privacy clear.

Privacy
  • We have a very large and growing email list.
  • The addresses on that list are private.
  • They are not being shared, and they will never be shared.
  • We will never sell, or even rent that list. Never.
On the issue of tracking readers and subscribers.
  • We have no way of tracking any person on the email list.
  • We have no way of knowing who reads an email.
We now have the ability to understand all of the following.
  • How many emails are sent.
  • How many emails are opened.
  • How many emails receive a click.
  • And, how many emails are forwarded.
We don't know what any one person did. We cannot track you individually.
I bought this new email program to try and get a clearer understanding of what is happening in the aggregate. I thought the information might help me to better understand what is happening. I believe this information could help me to get some ideas on how to do things more effectively. I want to find ways to do what I am doing better.

Please understand we can't do everything. I can't even do everything I want to do right now.

I view the Alzheimer's Reading Room as a unique one of a kind support group. Not a support group in the traditional sense. And, not a support group that acts like a message board, or an email "list serv". Message boards and "list servs" for Alzheimer's already exist.

The goal here is to provide information in an easy to read, easy to use format. In addition, the comments area is designed to allow readers to add insight and advice on a single issue. The single issue, or issues, in the article above each comments section.

I did learn quite a bit from the article, Why Don't The Emails from the Alzheimer's Reading Room Get Forwarded.

One of the most important things I learned is that I should never underestimate the Collective Brain of the Alzheimer's Reading Room.

I am very happy to write those words.

Thank you, again.




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