Aug 12, 2012

Tell us, Bob... will you be caregiving until the day you die?

Alzheimer's World is a kinder, gentler, more compassionate, loving, caring place. If you care to do so, you can carry what you learn in Alzheimer's World back with you into the real world.

By Bob DeMarco Alzheimer's Reading Room

long winding road
Under the article, The Sweet Aroma of Alzheimer's Care, and in the comments section  Louise C  asks,

Tell us, Bob... will you be caregiving until the day you die?

Louise, this is a very good and timely question. I have been thinking for a couple of months now about what I should write or say.

I am an Alzheimer's caregiver
Or, I was an Alzheimer's caregiver.

You helped me make my mind up. I will say, I am an Alzheimer's caregiver when I write and speak.

If necessary I will explain since I am no longer caring for Dotty, or anyone directly.

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I believe many would agree, once a caregiver, always a caregiver.

I can't say what I will doing until the day I die, but I can say I fully intend to share the intellectual capital from my long journey with Dotty, and the experience I gained here on the blog.

I certainly learned a lot by doing research, and I certainly learned even more while caring for Dotty.

However, the largest part of my caregiver intellectual capital came about as the result of the Alzheimer's Reading Room (ARR).

When I began writing here it forced me to organize my own thoughts. Each time I wrote, I came up with new and sometimes better ways to live with Dotty. I think it is safe to say I came up with new and better insights.

As the ARR evolved, we started receiving more and more comments. The comments were always thought provoking, and also brought out insights and better ways to do things.

The comments forced me to think.

Later on, the emails started coming in. Once again, I am often forced to think about problems and new and better ways to deal with those problems.

We already have lots of information when a new caregiver emails me. So, I can send them some links to get started, and then instruct them on how to access the exisiting knowledge base on this website.

We have over 3,800 articles and most of those articles have comments from our readers. The comments are powerful. Most importantly they act as additional, or sometimes as the only, support for caregivers.

You can access the knowledge base by using the search box on the right hand side of every page.

As I move forward, I hope I can become what can best be described as a mentor, or a guide.

I want to be able to walk caregivers up to the fork in the road so they can choose which road they would like to take, burden or Joy. I want to help them to choose. And, I want them to get there a lot faster than I did.

For more experienced caregivers, I want to tell them about the parallel universe that exists for most Alzheimer's caregivers, I call it Alzheimer's World.

In Alzheimer's World you look at everything from the point of view of the person who is deeply forgetful. You ask why? How? What happened before and after an episode.

Unlike real world where we see Alzheimer's related behaviors as nutty, crazy, disconcerting, and often bizarre; in Alzheimer's World these same "exact" behaviors are the norm, the normal.

Alzheimer's World is a kinder, gentler, more compassionate, loving, caring place. If you care to do so, you can carry what you learn in Alzheimer's World back with you into the real world.

So I think it is safe to assume for the foreseeable future that I intend to remain an Alzheimer's caregiver.

I am already somewhat amazed at what I am writing now. For certain, I am gaining new insight and I am better able to describe my own caregiving thoughts and beliefs. I feel like I can improve everything I already wrote on this site.

I guess from here on in I am going to need to rely on others to let me know how my new ideas work. I won't be able to know for sure like I could when Dotty was with me.

Right now, they are making more than 1,000 new Alzheimer's caregivers each day in the U.S. alone. I don't think I'll get lonely.

I want to turn my attention now to one really big problem -- what happens when a caregiver gets abandoned by friends and family?

In the past, all I could do was write here on the ARR. Now, I might actually be able to do something about it out in the world.

I am really looking forward, in fact getting anxious, to get out in the World. Lately, I have been thinking I should get out to support groups and go talk to some caregivers in person.

I am thinking about creating my own Meet-Up down here in south Florida, and then eventually in other places. I am also thinking about creating a Symposium, although that will be a grander endeavor.

I knew the day would come when I could go out in the world and share. The time has come.

My name is Bob DeMarco, I am an Alzheimer's caregiver.

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 312,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room