Tuesday, December 18, 2012

A Wonderful Christmas Day with the Deeply Forgetful


Once I dismissed Alzheimer's I was able to start thinking more clearly. As usual, I finally realized I was looking at the problem from the wrong side of the fence.

By Bob DeMarco
Alzheimer's Reading Room


A Wonderful Christmas Day with the Deeply Forgetful
I am already thinking about Dotty and Christmas day. My mother, Dotty, went to Heaven on May 25, 2012. The 25th.

I wonder how I'll feel Christmas morning.

Right now, I am thinking of Dotty's first Christmas with Alzheimer's. Dotty was not very enthusiastic when she received her gifts. I remember that. It still hurts to think about it and envision that day.

At the time, I was new to caregiving so I think you could say I was making it more about me, and not really about Dotty. I was thinking about how I felt, and not really focused in on the affects of Alzheimer's disease and how Dotty was feeling.

Over time I changed this paradigm. I started thinking about how Dotty was feeling in any given situation. And next, I started thinking, what am I going to do about this?

Eventually I came to the understanding that Dotty was deeply forgetful. This I think was a remarkable revelation, and it changed the way I was thinking. More importantly, the way I was feeling.

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I came to understand that almost everything that was happening with my mother, and most importantly, with my relationship with my mother was being driven by the deep forget.

I started giving this more and more thought. It seemed to me that everything was driven by the simple fact that my mother had almost zero "right past this minute" memory. She was in fact - deeply forgetful.

This made me sad at first, but not for long.

In fact, this revelation helped me to defeat and  send away all the negative stuff associated with Alzheimer's disease. The stigma, the myths, the lies, and the cognitive laziness that comes with a diagnosis of Alzheimer's disease.

My mother didn't have Alzheimer's, she was deeply forgetful.

I went and looked in the mirror. I said out loud, Dotty is deeply forgetful. I took control of my brain. I sent Alzheimer's packing.

Over time, I forgot my mother had what they call Alzheimer's. Instead I started focusing on the "deep forget".

My view of Alzheimer's changed. My understanding of dementia changed. I dismissed those stigmas. I want to say this loud and clear, I turned my mother back into a

Whole Person.

I made Dotty whole again.

I changed my outlook by adding two words to the lexicon of my brain. Two words.

Deeply forgetful.

As many of you know, I was no longer sad. I now had something to do. I used my brain. I also decided I would lend my brain to Dotty when necessary.

I actually understood what two brains are better than one went meant. We had two brains, lets use mine.

Once I dismissed Alzheimer's I was able to start thinking more clearly. As usual, I finally realized I was looking at the problem from the wrong side of the fence. Dotty's right now memory was shot. A given. I couldn't do anything about that. What could I do?

Then it finally dawned on me, memory loss was not what was important, it was memories.

Dotty had lots of memories. More than I first imagined. This really came home to me the day Dotty told me not only the name of the first school she attended in 1922, but the name of the second school she attended in 1925.

I finally realized there is a lot more in there that I am capable of understanding, more than I am capable of realizing.

We started focusing on memories. And from that time on I rarely thought about Dotty's inability to remember right now. Dotty's memory was not shot, she could remember all kinds of fascinating things - events, times and people.

She repeatedly told me things I never knew. In fact, many times I had to call my sister or brother and ask them if what she was telling me was true. They were true. She told me these stories with some passion and with varying looks on her face.

We defeated Alzheimer's disease and we sent it packing.

My first advice to you is to make a concerted effort to come to  the understanding that your loved one is deeply forgetful. And at the same time to understand they can remember, they have memories.

I am going to recommend that on Christmas day you ask some simple question. Keep it very simple.

Do you remember where you went to first grade? Do you remember when you got married? Try to figure out the happy questions. Keep the number of words to as few as possible. And learn how to keep your mouth shut and watch closely, and listen closely.

My second advice is to get some of those stuffed animals that sing and dance. You know, you press their hand or foot and they start singing and dancing, or shaking.

Dotty loved those animals when she was deeply forgetful. They mesmerized her and brought a wonderful look to her face. PS. She loved those animals before she was deeply forgetful and they mesmerized her and brought a wonderful look to her face.

She didn't forget those feelings.

Try to remember its not only about how you feel. It is also about how your loved one living with dementia feels.

You are going to have to lend them your brain for the day.

Note: A few of you have let me know you bought a repeat parrot for Christmas. Don't forget to let us know what happened. Put those parrots close to the deeply forgetful. Right in front of their face and no more than a foot away.

Oops. I forgot to get Harvey a Christmas present. Dotty wouldn't be happy about that.



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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