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".
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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.
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.
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.
I still felt angry, bent out of shape, and confused.
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,
One day things changed.
Not the neurological disease, how was she thinking, how was she feeling? How was her own nuttiness impacting her?
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.
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.
You see, Alzheimer's is not about you, it is about the person living with dementia.
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.
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.
To be honest, its kind of fascinating, interesting, and uplifting.
On yeah, one more thing.
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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.You are reading original content from the Alzheimer's Reading Room.