Jul 27, 2012

Anything You Wish You Had Asked Dotty?

You cannot change the past, but you can change the future.

Anything You Wish You Had Asked Dotty?

Mary Reichard asked under the article, Dotty Went to Heaven 9 Weeks Ago, Emotions Build, Dream
"Anything you wish you had asked Dotty, said or done that you didn't do while she was alive?"
This is a very good question and different than the more frequent question I get asked, if you could do it over with what you know now, what would you have done differently?

By Bob DeMarco
Alzheimer's Reading Room

Let me start by saying this. One of my most important personal operant philosophies is:

You cannot change the past, but you can change the future.

So when someone asks me what I would do differently, I always have a problem answering that question.

In response to Mary's question, I can say, so far there is nothing that I wished I had asked Dotty that I didn't ask.

I should add here, Dotty and I took care of my father together when he was terminally ill. As a result, I was asking my father all kinds of questions, and discussing all kinds of end of life issues and death issues with him.

At the same time, many of those questions or discussions would spill over to a conversation I would have with Dotty.

As a result, I did not get caught short when it was determined that Dotty was suffering from Alzheimer's related dementia.

Custom Search for Readers

Custom Search of related articles
How to Understand the Difference between Alzheimer's and Dementia

Custom Search of related articles
The Importance of Socialization in Dementia Care

Custom Search - Alzheimer's 3 Little Words That Work

Mary, you might be asking did I wish I had talked to Dotty about things before it was too late?

I can tell you that I was draining Dotty's brain about the past in the early years when she was first diagnosed. Dotty had an excellent long term memory at that point.

Sometimes Dotty would tell me something I never knew, and then, I would ask my brother or sister if they knew about it.

I am by the far the youngest in my family. An unexpected child lets say. As I result, two of my grandparents were gone by the time I was born. Another died when I was almost 4. And, Dotty's father did not live close enough that I had the opportunity to drain his brain. He died when I was 12.

If anything, I wish I had known all of my grandparents in a real and deep way.

So no, I am not in any state of angst or regret when it comes to either my father or mother.

To the question of what I might have done differently with Dotty. I can only say, if I knew then what I know now, I would have done everything harder, sooner and faster.

I certainly learned a great deal in the last 8 years.

I have asked others if they think or believe that I could do the same thing with another Alzheimer's patients. I was surprised to learn they all say yes without hesitation.

This does intrigue me.

What I really want to do is get my hard earned "intellectual capital" into the hands and minds of persons that would try and use it the same way, or with a similar determination as I did.

Here is something I never wrote before. 99.9 percent of everything I accomplished with Dotty happened in years 4 through 8. By the fourth year,  Dotty was about a 16 on the MMSE. In other words, she was already entering into the moderate to severe stage of Alzheimer's.

I know and understand that a lot of the newer people don't know any of this. I also know and understand that most people think I had the "poster girl" of Alzheimer's. Well maybe I did, but not in the first 4 years of caring for her.

Dotty was mean, hard to manage, and the challenge of a lifetime for certain.

But then we turned the corner.

I can say to everyone, with the benefit of "hindsight" I can clearly improve on everything I did and accomplished along with Dotty. I am still getting new and better ideas almost every day. I am gaining personal insight into what we did do, and how it could be done more effectively.

I could rewrite every single article that I wrote personally on this website and add new, fresh, and important insight and advice. And, with a much clearer perspective.

In fact, I fully intend to do it.

One thing for sure. I am not going to throw my hard earned intellectual capital down the toilet.

Of course, you can use the search box over on the right and find most of it for free right now.

I will probably end up charging others for the new, improved, organized version(s) that they will be able to hold in their hand.

I'll promise you this right now. The very first chapter, which is less than 2 pages long, will be worth the price of the entire book for most people.

I have a very good understanding of what caregivers feel and what caregivers need.

Imagine. Over 34,000 comments and 13,000 emails. Over 2,000 articles (3,800 total) that contain advice and insight.

Mary, if anything, I would still like to be doing things with Dotty. I guess this explains why I am carrying her around in my pocket from time to time.

There are many reasons why I did what I did. But one thing that helped me carry on every day was my simple philosophy.

Once Dotty and I started living our life one day at a time it really started to work.

You cannot change the past, but you can change the future.

Advice. Try and go one day at a time. Try to change the future. Don't let the past get in the way.

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 5,000 articles. Bob lives in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room