Mar 19, 2014

Alzheimer's Peace or War

Our relationship was no longer strained by my inability to understand that in Alzheimer's World what the person who is deeply forgetful thinks to be true is true.

Quote When someone living with Alzheimer's believes something to be true it is true
By Bob DeMarco
Alzheimer's Reading Room

One of the problems I encountered early on in my Alzheimer's caregiving days was that my mother was always hungry.

Twenty times a day she would say, "I'm hungry, I'm starving".

One time she even convinced her friends that I was starving her, and there was nothing in the house to eat.

These four friends got together and sent someone over to find out what was going on.

As the ambassador of friends entered our home she asked, "why are you starving your mother"? I responded by asking, "what are you talking about"?

She said, your mother called us and said, you aren't feeding her, and there is nothing in the house to eat.

I then took her on a tour of our refrigerator, freezer, and food cabinets. Then I sarcastically asked, "does it look like I am starving her to you"?

She answered, No.

On a side note, about three years later this friend finally realized (believed for the first time) that my mother was living with Alzheimer's.

This realization happened after Dotty told her she was still driving and still going to the store every day. The friend knew Dotty hadn't driven in four years.

One time for Mother's Day I took my mother out to this big buffet at the country club. She ate everything in site. My eyes were actually bulging out of my head as she continued to eat and eat.

After we arrived home,  Dotty took off her new Mother's Day outfit, and made herself a nice big bowl of cereal. I said to her, "you can't possibly be hungry, you ate like a horse at the country club".

She told me to "kiss her a**".

Day after day, year after year, Dotty would say, "I'm hungry, I'm starving."

I would respond, you can't possibly be hungry you just ate. It only got worse over time.

Right after eating lunch or dinner, and with the dishes still in front of her, Dotty would say, "I'm hungry, I'm starving".

I would respond, look, you just ate, the dishes are still in front of you.

I must admit Dotty was getting smarter in this encounter, she would then respond, "I don't care, I want something to eat".

Most of the above episodes led to miserable, rotten days.

I would try to explain, you just ate. Or explain, you can't possibly be hungry. And then the argument would begin.

This usually culminated with Dotty in her bedroom curled up in a ball, and with me sitting in another room with a stomach and heartache.

Why couldn't I accept that if Dotty said she was hungry, she was hungry.

What was wrong with me?

Finally, I realized Dotty couldn't remember she just ate, and what ever it is that tells you your stomach is full, well that no longer worked in her body.

Finally I realized something had to change and that something was me.

Let me ask you?

If Dotty said she was hungry was she right or wrong?

Who was I to say, you are not hungry.

On the other hand, was I wrong? Didn't she just eat?

The Alzheimer's communication conundrum

I finally decided it was me that was wrong. Wrong for denying Dotty her own very real reality.

I started to accept that Dotty's reality was Dotty's reality; and, she was entitled to her own reality.

It finally dawned on me that Dotty was

Deeply Forgetful.

I accepted that Dotty was deeply forgetful. Amazingly, this seemed to satisfy my brain. I finally accepted that she could no longer remember - the right now and immediately before.

Once I finally straightened out my own head on this, I started to respond with answers that Dotty could accept.

When she sang, I'm hunnnnnnnnngrrrrrrrrry. I would get near her, make sure she was looking at me, I would smile, and say good, we are going to eat in a little bit, I just want to finish what I am doing.

This became acceptable to both of us. Dotty accepted this answer and all was well.

Just so you know, from the very beginning when asked what she had to eat that day Dotty would always responded, nothing. After we reached Alzheimer's World, Dotty would sometimes ask me, what did I have to eat today? I was shocked when she did.

It would be true to say we finally reached what I now call the

Alzheimer's Détente

You see, Dotty and I had finally reached the point best described by the word Détente. The end of strained relations and tensions.

Did we sign a treaty? No.

We just decided to believe in and understand each other.

We actually learned to compromise.

Once we reached our state of Détente things just got better and better and better.

Our relationship was no longer strained by my inability to understand that in Alzheimer's World what the person who is deeply forgetful thinks to be true is true.

No matter what your reality tells you is true, or no matter what your brain tells you to be true, the truth lies in your acceptance of a simple place

Alzheimer's World.

It is not so very hard to accept the new reality once  you make it to Alzheimer's World.

Once there, life begins a new.

Having said the above, I am now sitting here laughing at myself.

Why was I so hard headed?

And, why did it take me so long to figure this out?

We're supposed to be the ONE's with the fully functioning brains.

My advice to you. Stop driving yourself crazy. Don't be like I was.

Instead, learn to accept that what a person living with Alzheimer's says or does is perfectly normal in Alzheimer's World.

Once you start listening, instead of overreacting - what a person living with dementia says and does will start to make sense.

Just ask yourself this simple question,

Who is the person living with Alzheimer's?

*Détente meaning relaxation, the easing of strained relations.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 5,000 articles. Bob lives in Delray Beach, FL.

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