Bob DeMarco Alzheimer's Reading Room

Tuesday, October 15, 2013

Why Do Dementia Caregivers Torture Themselves?


For several years, I tortured myself psychologically and emotionally. To this day I look back and ask myself, Why?

Why Do Alzheimer's Caregivers Torture Themselves
Saint Genesius
Alzheimer's is a sinister disease. It robs the deeply forgetful of the ability to remember, to think, concentrate, and frequently affects mood and behavior in a negative way.

Alzheimer's disease (AD) eventually robs the patient of the ability to do things we take for granted -- like buttoning a button.

Alzheimer's often robs patients of the ability to say "yes", so instead they say what comes easiest -- No.

These new and often bizarre changes brought on by Alzheimer's can feel like torture to an Alzheimer's caregiver. This explains in part why a large fraction of caregivers, up to 40 percent, suffer from depression.

The other day I answered a question by saying, "its the job of Alzheimer's to torture you".

Later on as I thought about those words, I was surprised that I used the word "torture". Surprised until I remembered that I once thought, "Alzheimer's is trying to kill me".

Alzheimer's kills the brain of the person living with Alzheimer's. It will also try and kill the spirit of the Alzheimer's caregiver.

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I'm really no different than any other Alzheimer's caregiver. More or less, I felt how most Alzheimer's caregivers felt when the diagnosis becomes "official".

Even though I knew it was true, I still couldn't accept it a first.

I can't remember how many times on a good day I thought, maybe its not dementia, maybe its not Alzheimer's. I suppose I was hoping I would wake up and it would be gone. I suppose I was hoping for a miracle.

Here is what I knew.

I knew that the mean behavior of my mother was being caused by Alzheimer's.

I knew that her inability to remember was being caused by Alzheimer's.

I knew that her inability to do things was being caused by Alzheimer's.

I knew that when she said at least 20 times every day, "I'm hungry, I'm starving" it was the Alzheimer's.

If I knew it was the Alzheimer's why did I feel angry, bent out of shape, confused, and why couldn't I get control of my feelings? 

It was not like I wasn't trying.

Let me make this clear.

I knew that millions of people around the world were having a similar experience to mine.

I knew these hard to comprehend, hard to deal with behaviors were not unique to us.

In fact, I concluded just the opposite. That they were common and were to be expected. I knew they were going to happen any minute now.

I still felt angry, bent out of shape, and confused.

Was the Alzheimer's torturing me, or was I torturing myself?

I want to make this clear, I knew why Dotty was acting the way she was, I knew what was happening, and I knew why it was happening; but,

I still felt "bent out of shape".

One day things changed.

They changed when I stopped thinking about me, 

and I starting thinking about how Dotty felt.

What was going on in her head? 

Not the neurological disease, how was she thinking, how was she feeling? How was her own nuttiness impacting her?

On that day I entered Alzheimer's World for the first time.

Later on I came to understand that Alzheimer's World was there all the time. Alzheimer's World is a parallel universe. Parallel to what we think of as our world, the real world.

All caregivers live on the edge of Alzheimer's World all the time.

The problem as I see it, is how do you find your way into Alzheimer's World? I learned you take one giant step to the left and your are in.

One giant step.

Once in, you start looking at things out of the eyes of the person living with dementia. 

As soon as you do that something remarkable happens.

What happens? All the stuff that is driving you crazy becomes the normal, the "norm". The expected.

When you look at the behaviors and actions from the perspective of the person who is deeply forgetful, it doesn't seem so bad anymore.

You see, Alzheimer's is not about you, it is about the person living with dementia.


Its not only about how you feel, its also about how they feel.

You can start out in Alzheimer's world by asking yourself, Why?

Why is the person who is deeply forgetful acting like this?

Is there a reason?

What can I do about it? How can I change what we are doing to improve our circumstance? Our lives.

Oddly, all of a sudden the little things become the little things. The not so important stuff becomes the not so important stuff.

Suddenly, Alzheimer's caregiving becomes about your loved one, and not about you.

I guess you can say, once I discovered Alzheimer's World, I stopped torturing myself.

I stopped torturing Dotty also.

I stepped off the path of burden and onto the path of joy.

To be honest, its kind of fascinating, interesting, and uplifting.

On yeah, one more thing.


I started thinking about life again.

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Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room (ARR). Bob is a recognized influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. The ARR Knowledge Base contains more than 4,000 articles. Bob lives in Delray Beach, FL.
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