Sep 23, 2016

Alzheimer's Care, I Had to Remind Myself My Mom Was Deeply Forgetful

When dementia strikes the majority of us are overwhelmed by the stigma attached to Alzheimer's. Our brain tells us, there is no hope.

The stigma of Alzheimer's care and dementia care.
By Bob DeMarco
Alzheimer's Reading Room

Let's face it, when Alzheimer's strikes we are immediately overwhelmed by the stigma attached to dementia.

Do we feel compassion? Or, are we all encompassed by a feeling of hopelessness?

How do/did you feel?  Do you feel confused? Then frustrated? Then angry? Do you feel a sense of hopelessness?

Did you?

Like most, when Alzheimer's strikes we are already brainwashed by the Stigma.

As for me? When Alzheimer's struck I learned early on that I was Clueless , biased, and close minded. I thought I knew what Alzheimer's was. After all, I am a well educated guy.

I learned early on that not only was I clueless, I did not have the slightest idea about how to deal with a person living with dementia.

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There was no pill. There was no surgical alternative. There was no effective treatment. And, the doctor was of little or no help.


I worried early on that the day was coming when my mother would no longer

Remember Me.

I wondered how long it would be before my mother would be a vegetable.

After a time I had to admit to myself

I'm brainwashed.

Alzheimer's is a sinister word in connotation and meaning.

We are brainwashed before we begin. Before we begin the acts of caring.

We ten to think, if you have a diagnosis of Alzheimer's there is no hope, no one survives. Isn't this the message we receive? Isn't this what they tell us?

The attached stigma prepares us for a sad, uncertain, and what seems like a miserable fate.

We are brainwashed.

I soon realized that it was all of my preconceived notions that were holding us, mom and me, back.

I decided I had to change my way of thinking. I had to reeducate my brain. I was thinking all the wrong thoughts, and I was traumatizing my own brain.

It was at this point that I realized I had to change the way I was thinking about, and dealing with my mother. I had to learn how to understand how my mom was feeling. I had to figure out the way to cope with her effectively. I had to learn new and different ways to communicate with here.

And most of all, I had to embrace her.

I had to dismiss Alzheimer's and get on with our lives. I had to dismiss the stigma and come to the understanding that my mother was,

Deeply Forgetful but Still a Real Person.

Real and Whole.

The following episode might help you to better understand the concept of the Deep Forget.
One night I was having an interesting conversation at the dinner table with my mother. She had just finished eating a small steak, mashed potatoes, and broccoli. The conversation turned to south Philadelphia, the place where my mother was born and raised (1916).

I asked her, where did you go to first grade? She answered without hesitation, Saint Monica's. My mother attended Saint Monica's in the 1920s.

Later in the conversation, and with her dinner plate sitting directly in front of her, my mother asked, are we going to eat today? She had forgotten that she just ate.
The above conversation took place in 2010.

My mother could remember 1922, the year she went to first grade. But, she couldn't remember she just ate. Even with the empty plate sitting right in front of her.

The stigma attached to Alzheimer's is burdensome. Unfortunately, we as caregivers drink the kool-aid. We allow our brains to focus on the negative instead of focusing in on the right here and right now. I call this NOW. And if there is one thing you must learn when caring for a person living with dementia it is,

It's Always Now.

The episode I described reinforced what I already knew - my mother was capable of more than I could imagine. More than I could imagine with my own stigmatized brain.

Her brain was still full of information.

Many parts of her brain were still working. She was still functioning. She still enjoyed many of the same things she always enjoyed. Like her favorite food - the Philly cheese steak. It was not unusual for her to say, you know what I would like right now? Answer, a Philly cheese steak.

As my mother continued to become more forgetful -

Deeply Forgetful

I had to learn to - remember for her when she couldn't. Afterall, I knew her my entire life. I knew what she liked and enjoyed.

So we started living our life.

I decided to stop using the words Alzheimer's and dementia to describe my mom. In doing this, I left the burden behind. I dismissed it.

So when my mother would ask the same question many many times, I reminded myself she is deeply forgetful.

When she seemed confused, I reminded myself she is deeply forgetful.

You could say I changed the way I was thinking. I fed my brain the right and correct information. My brain came along for the ride.

Pretty soon I forgot my mother had Alzheimer's (for the most part). I hope you understand what I mean.

I learned to focus on the good stuff, and dismiss the bad stuff by using my brain.

It was in this way that I learned and taught myself that

My mother was Deeply Forgetful

and a

Whole person.

The next thing you know, the daily problems started to diminish. And in this way, you dismiss the stigma and begin to live your life anew.

Two words and the understanding of what they meant changed our lives

Deeply Forgetful

The Best Way to Find Solutions to the Problems that Caregivers Face Each Day

Keep in mind, I took care of my mom for 8 and a half years, 3,112 days. I was always trying to find new and better ways to understand, cope and communicate with her. If you work through the links below, and read the articles you can benefit from my experience.

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Alzheimer's World

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Original content the Alzheimer's Reading Room