Feb 6, 2011

Alzheimer's Caregiver Survival ...

Everyone in the audience is either going to get Alzheimer's, or know someone who has it. -- Dr. Oz.

Alzheimer's Reading Room

The Alzheimer's Reading Room continues to grow each day. Every day.

The intellectual capital on this blog continues to grow. Intellectual capital -- the collective knowledge of the individual readers.

I call this the Collective Brain of the Alzheimer's Room Room.

I started writing here to keep track of what I needed to know, and what I was doing. Since I put the blog into the public arena the information was available to anyone that came along.

And then it happened.

I started receiving emails. More than I could have imagined.

There were many important days in the development and metamorphosis of this blog.

The single most important day occurred when Tony Polk told me that what the readers really wanted to hear about was what I was doing with Dotty.

I took his advice to heart and started writing. Right there, right then, when I hung up the phone. The blog started to grow immediately.

I decided in late 2009 to bring in some writers. I had no idea how this would be received or if it would work. Wow. Better than I could have ever imagined.

Over time, I continued to search for a vision for this website. My vision changed several times.

It was only after the media interviews in late 2010 that I finally realized I needed a concrete vision that I could communicate clearly and concisely. You only get 30 second sound bites in the media.

I took out my da Vinci pad and started thinking. In January, 2011 it came to me. I had to find a way to convince as many Alzheimer's caregivers as possible that they needed to:

Begin living their lives the way they always had.

This meant both the caregiver and the patient. I understand there are constraints. I also know that most of these constraints are limitations of the mind. Ironic?

It is my firm belief that most Alzheimer's sufferers can do more than the typical caregiver is able to imagine. Alzheimer's caregivers are often constrained by their own inability to imagine the wonder of it all.

This is understandable. I know because it happened to me until that wonderful night when my own, personal, vision came into my mind.

Dotty and I would continue to live our life the way we always had.

This is my vision and this is my message.

Today, we received the following comment. This comment made my day.

Its a Super Sunday for all of US -- for the entire Collective Brain of the Alzheimer's Reading Room.

MalErnst wrote in response to --
"Alzheimer's ... no survivors. Not a single one".

I agree with both sides. An answer to this awful disease needs to be found, and this takes funding. However, more effort also needs to be made to provide information to the caregiver.

My wife (now 84) was diagnosed two and a half years ago. We have a very good neurologist, but all that was said regarding care taking was that the Alzheimer's Association provides a lot of services, and I got the impression it was mainly for day care, etc.

Since she was not at the stage of requiring such help, I did not pursue their assistance. This may have been a mistake; but, if their services were better known, and promoted more by the doctors, both my wife and I might have been helped.

As it were, what happened was that for the first two years we went through stages of emotions that varied from shock, to perhaps mild depression; then I stumbled onto the Alzheimer's Reading Room, and everything changed.

I not only learned even more more about the disease, and research, but I also learned about being a caretaker; and, more importantly, I learned from real live people that it was possible to cope.

In fact, just a few weeks ago we started to aggressively attack the problem by starting back to going to the YMCA for physical exercise six days a week, after almost a two-year hiatus.

And we both decided that we were going to live each day to the fullest, the way we always did, until we absolutely could not do it anymore.

The results have been amazing. We are both benefiting through much improved mental and physical health, as well as better knowledge. I think the world needs much more of that.

There are more than 5 million Alzheimer's caregivers searching the Internet for information, advice and help. They are searching for us right now.

Share, Recommend, email to everyone you know.

Like Dr Oz said on his television show:
Everyone in the audience is either going to get Alzheimer's, or know someone who has it. -- Dr. Oz.

Bob DeMarco
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