Dec 16, 2014

Caring for My Mother - I Was Trying As Hard As I Could and it Wasn't Working

Believe it or not in a world filled with Alzheimer's you often have to do one simple thing - the exact opposite of what your brain is telling you to do.

By Bob DeMarco
Alzheimer's Reading Room

It finally realized I was acting like the victim. Every time my mother would say -

Get out, I don't need you, I don't want you here

I felt hurt.

Alzheimer's Love

I blamed her for being mean to me. After all I was caring for her 24 hours a day, seven days a week. Why didn't she appreciate me and my effort.

It felt like I was not being given one iota of credit for my effort. My heart hurt, my brain hurt.

I finally realized Alzheimer's was trying to drag me down too. Huh? Yeah, Alzheimer's was trying to ruin my brain. Yikes, I thought.

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I finally received the clue at 1 AM on May 7, 2005.

Something Has to Change.

Hmm, I thought. Hadn't I already changed. I dropped out of the world to take care of my mother. I was trying to be kind and caring, and the only think I knew was I was getting no where fast.

What was I doing? I was complaining about my mother's behavior all time. Complaining to anyone that would listen. Some people call this venting. What was this accomplishing absolutely nothing.

I was noting more than a hamster on a treadmill. I kept doing the same thing over and over. The result. No matter how hard I tried. No matter how fast I ran. No matter how mentally and physically exhausted I felt the same result happened every time - I was a complainer.

What was I doing wrong? I kept trying to explain to my mother that she could no longer live by herself. I tried to explain all the reasons why over and over. It dawned on me. She doesn't understand a word I am saying. If she did, she would stop saying the same thing over and over.

Get Out.

I finally realized what I was really trying to do was change my mother. Change her back in the person she was. That was not going to happen, and I knew it would never happened (years later I proved myself wrong on this one by the way).

Something Has to Change and that something

Was Me.

I was the one that had to adapt to this new world I was now living in. I decided to call this world - Alzheimer's World.

How did I get there? I took one giant step to the left and entered this parallel universe. So every time my mother acted up, started to be mean, started to do things that I just could not understand - I took a step to the left.

Once I made it Alzheimer's World I started listening to my mother. I soon learned that she was often trying to tell me something and I could understand if I listened and thought about it.

What did "get out, I don't need you, I don't want you here" really mean. It meant my mother was scared to death and confused. Most she was worried that I was going to put her away in a home.

Understanding that was one of the things I was doing wrong. I was worried about how I felt. I was complaining about her irrational behavior and my sad sack feelings. So instead I just started listening and observing.

Get out meant, I am scared and confused. So when my mother would get mean I would meet her meanness with an equal and opposite behavior. I decided to be kind and reassuring.


Believe it or not in a world filled with Alzheimer's you often have to do one simple thing - the exact opposite of what your brain is telling you to do.

Arguing with a person living with dementia is a waste of time. They won't remember what you are saying by the time you get to word 10. In fact, all you will be doing is confusing them and guess what happens next? They get meaner. And then what happens?

You end up with a broken heart and an overwhelming feeling of helplessness.

You can't win if you constantly argue, try to explain what they are doing wrong, try to explain there wrong way of thinking, and all the other stuff your brain tells you to do based on your life long experience of dealing with people.

In Alzheimer's World you have to learn how to understand, cope and communicate with a person living with dementia.

The most important thing you must do is figure out why they are doing what they are doing. How do you do this. You watch them and keep your mouth shut.

For example. Ever day my mother would open the freezer and start unwrapping every thing. She would even open stuff in boxes and look inside. The she would just throw everything back.

This Was Driving Me Crazy.

Once into Alzheimer's World, I would just stand there and watch her do it. I would not say a word. I would just think -  what is she doing and why is she doing?

And it finally dawned on me.

For most of her life she would go into the freezer around that time of day and get something out for dinner. In other words, to thaw it out.

Was it possible that that was what she was doing? Yes. But how do you explain that she would just throw everything back into the freezer and sometimes without re wrapping it? Hmm. Maybe she forgot why she was there in the first place. Every start to do something, get distracted, and then forget what you were going to do (in other words, you can't remember what you were going to do no matter how hard you try)?

Was it possible that the part of her brain that was working - memories - was reminding her to thaw out something for dinner; and that, the part of her brain that wasn't working - short term memory - was the reason she could no longer follow through on this?

Well, that was what was happening.

Amazingly, once I understood this it never again bothered me when she started to do it. I just let her do it.

Here is the good news. Eventually she stopped doing it so often.

What doesn't work.
  • Complaining about the same thing over and over.
  • Trying to explain to a person living with dementia that they are mean.
  • Trying to explain to a person living with dementia that what they are doing is not right.
  • Using too many words.
Try to remember this.

Something Has to Change
That Something is Me You.

The bottom line is caring is simple.

Meet meanness with kindness.

These articles contain many of the things I discovered about how to best understand my mother and cope with a person living with dementia..

She said, Get Out, I said, I'm Not Going Anywhere

The Role of Reassurance in Dementia Care

Communicating in Alzheimer's World

Bob DeMarco
Bob DeMarco  is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide.
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