Nov 26, 2012

Looking Beyond the Obvious to Find Happiness and Joy

Would you say it is pretty common for an Alzheimer's caregiver to "vent" or complain about the behavior of an Alzheimer's patient???

By Bob DeMarco
Alzheimer's Reading Room

Looking Beyond the Obvious to Find Happiness and Joy
Let's start with a simple question.

How many times have you heard, or read, someone on the Internet describe a person living with Alzheimer's as mean, difficult to deal with, or challenging in their behavior?

Take a minute and answer the above question in the comments section below this article.

Would you say it is pretty common for Alzheimer's caregivers to "vent" or complain about the behavior of an Alzheimer's patients???

How many times have you heard an Alzheimer's caregiver say, or ask,

I wonder why they behave like that? 

Are Alzheimer's patients inherently mean or challenging???

By now you might have noticed I am interested in some comments and feedback on these issues.

After reading the article below, if you can't make a comment, how about you type something in the comments box so I know you are out there.

For example, how about you tell us where you are. Like the city, state, and or country. I really do enjoy learning where you live.

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Have you ever heard an Alzheimer's caregiver say,

I looked at it from the viewpoint of the Alzheimer's patient and now I understand why they are acting the way they are?

In other words, instead of making it all about the caregiver and how they feel, actually make it about the Alzheimer's patients and how they feel.

I'll ask you again. Are Alzheimer's patients inherently mean?

After Alzheimer's set in my mother Dotty became mean. The two most easy to explain examples out of hundreds are:
  • She frequently told me to get out, she didn't need me, and she could take care of herself.
  • She frequently told me to kiss her butt (she didn't use the word butt).
Dotty would often take off when I thought I was trying to help her. She would go into her bedroom, curl up on the bed, and refuse to come out. Sometimes for almost 24 hours. You think that was easy to deal with? It would make my heart hurt, and my stomach hurt.

I tried to apologize or explain or cajole and none of it worked with Dotty.

Now we get to my good buddy Duteronomy.

Duteronomy comes storming into work one day and proceeds to tell me he has a big problem at the bank. He goes on to describe what he is going to do. In other words, he is going to go over and yell and scream at his banker. I tell him, "you are dead meat".

He asks what would you do (meaning me)?

I answered, well the first thing I would do is think about this situation from the bankers perspective. What can he do to help you get out of the problem, or at least extend the problem to a future date?

I said, you have to offer a solution to the banker that works within the current banking regulations (which they are bound by), a short term solution that he can present to his boss or a committee that they can accept, and your exit strategy which is somewhere down the road, most likely in 90 days.

I then tell him exactly what I would do. He came back after his meeting with the banker smiling.

All I had to do was think beyond the obvious and it worked.

Next, we have the hard to deal with, hard to manage Alzheimer's patients that are causing us, the caregivers, heartache and stomach ache.

What to do?

After months and months it finally dawned on me that I needed to Look Beyond the Obvious in order to deal effectively with my mother, Dotty, and her mean spirited behavior..

The first thing I did was buy a few spiral notebooks; and then, I started taking notes when Dotty started acting difficult.

I asked myself questions and wrote down the answers.

When did the episode happen? What time of day? What was I doing in the time before the episode? What was Dotty doing? Could I identify anything that was triggering the behavior?

Turns out, I started to see some patterns. Not only how Dotty acted, but how I reacted.


It finally dawned on me. What I needed to do was to start meeting all these negative behaviors with an equal and opposite behavior. Yep, do the the opposite.

Dotty would say, "get out, I don't want you here, I can take care of myself". Well actually Dotty would yell and scream that at me.

My reaction?

I would tilt my head to the left while she was looking at me --  and smile. Then I would go over and put my arm around her shoulder, hold her hand, put my head on her head and say,

"I'm not going anywhere, I'm here now, and we are here together". 

I would actually say that in a very low, calm voice.

Want to guess what happened?

Dotty stopped telling me to get out. Why? Because I gave her a massive dose of positive reinforcement and reassurance every time - She was mean to me.

I guess you could say I met meanness with kindness (and understanding).

It only gets better. For starters, less heartache and stomach ache for me and for Dotty.

Most importantly, I felt very good when I did it. And, even better when it started working effectively. I really felt good about myself. This allowed me to develop a positive self concept as an Alzheimer's caregiver.

You might consider buying a few spiral notebooks.

To start Looking Beyond the Obvious just ask yourself:

When, What time, Day or night, what was happening in the hour before it happened, What happened immediately after the episode, How did you react?

Why, What, When, Where, How.

Oh yeah, before I forget.

Also, take the persons temperature every day to establish the core body temperature. Dotty's was 97.6. When it rose to 98.4 she had an infection.

When Dotty had an infection she was either: mean, dull, or just out of whack memory wise.

Yeah, I had to look beyond the obvious to figure this one out also. Core body temperature is not always 98.6. And it  is rarely that high in the older old.

Look Beyond the Obvious, find out how and why the other person is feeling the way they are feeling.

Try to understand all the dimensions of a problem. If there is more than one person involved try to remember, the other person also has feelings.

Smile. Touch. Hug. Reassure. Don't say too many words.

Or, you can keep on complaining. I know what that feels like. I didn't like it and I refused to accept it.

Instead I decided to get off the path leading to endless burden, and instead found the path to Joy.

You can do it too.

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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