Sep 10, 2012

Reflections of an Alzheimer's Caregiver the Beginning

There was one worrisome thing near the beginning that stood out. I kept getting this image in my head of my mother lying in a bed, unable to talk, and unable to remember me.

By Bob DeMarco
Alzheimer's Reading Room

I arrived on the scene in Delray Beach in late 2003 to find out what was going on with my mother, Dotty. I was shocked at her state of health, and by the way she was acting.

I had no idea what was happening. In the next month the only thing the doctor could tell me is she is getting old.

My mother never had a major illness or a major operation. Me? Some sports injuries but like mom, I rarely visit a doctor. I am on a 11 year run right now. The only visits to the doctor for me have been physicals.

I think it is safe to say that at the time I really didn't know much about personal care doctors, the health system, and most importantly, what to expect in terms of Dotty's health care and needs.

Confused and bewildered for sure. Sound familiar?

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Doctors, one, two and three were fired in short order. None of them met my very simple rule 10-20-Zero. I'll explain that at another time.

I don't mind bragging, I'm smart. I'm goal oriented. I'm task oriented. I know how to get information.

I'm also honest.

So I am not afraid to admit that those first 14 months of caring for my mother were a disaster. One disaster after another.

I was trying to get a correct diagnosis even though I knew it was going to be ugly. I knew what the likely verdict was going to be. Alzheimer's.

However, I wanted to make sure it wasn't something else like mini strokes or even cancer that was causing my mother's new found mean spirited behavior and inability to walk without dragging her feet, and the inability to walk any long distance.

Lets just say my inability to find the right doctor, and my inability to communicate effectively with my mother were driving me "crazy".

I could not reason with my mother, and I could not change her.

I knew I had to find a new way to understand, cope, and communicate with my mother.

I scoured the Internet. I obtained all the books. I tried to find someone who could help or put me on the road to success.

I finally came to a conclusion. It was going to be up to me. So I jettisoned the books and rolled up my sleves.

I needed to start from scratch. I needed to learn how to understand, cope and communicate with my mother by developing new skills sets and communication tools. I had to invent a new way of dealing with my mother that would be very different from how I dealt and communicated with her in the past. Basially, I had to relearn a new way.

Understanding Alzheimer's was not that difficult. A couple hundred hours on the Internet and you start to get a good grip on research, cause and effect, and how it works in and on the brain.

It took a lot longer to understood how my mother was thinking and feeling. About 4 years.

I finally learned to cope by finding a new place I called Alzheimer's World.

Once I made it to Alzheimer's World, I finally learned how to communicate with my mother.

There was one worrisome thing near the beginning. I kept getting this image in my head of my mother lying in a bed, unable to talk, and unable to remember me. Or, unable to remember anyone for that matter.

Knowing that the day is coming when your loved one -- won't know you-- is the most horrific feeling of them all for an Alzheimer's caregiver.

This is the stigma being attached to Alzheimer's by people in the Alzheimer's community that should know better.

They want the public to believe that Alzheimer's is a certain death sentence, and that no one survives Alzheimer's. They want people to believe that a person living with Alzheimer's is dead even before they die. Shame on them.

After more than 8 years of caring for my mother, she was still talking to me, knew who I was, and to be honest, on occasion we had a grand ol' time together.

In the beginning, Dotty was meaner than a doberman pinscher in a junk yard. Fortunately, I found a way to turn that around.

I understand how burdensome Alzheimer's caregiving can be. I lived it.

I also believe it can get better and better.

You need to start by understanding Alzheimer's, and then, learning day by day how to effectively cope and communicate with a person who is becoming deeply forgetful.

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