Apr 26, 2014

The Cumulative Acts We Perform Each Day

The most amazing aspect of the cumulative acts is that they nurture the person living with dementia; and also, nurture the Alzheimer's caregiver.

Bob DeMarco 
Alzheimer's Reading Room

The cumulative acts we perform each day are what makes the difference in Alzheimer's and dementia care.

I starting thinking about this in earnest as soon as I made it to Alzheimer's World.

I use the word earnest because it best describes my the seriousness of my intent at the time.

I realized that my state of mind, and the state of mind of my mother, were at issue in the Alzheimer's caregiver dynamic.

I came to the understanding that not only was I confuse that Dotty was also living in a perpetual state of confusion.

Subscribe to the Alzheimer's Reading Room

Sadly, and in the beginning, instead of diffusing Dotty's confusion, I was only making it worse.

I constantly tried to reason with her, to explain. This only disoriented her. Made her more confused.

Here is a simple example.

Dotty was in the habit of buying lottery tickets each day. She had been doing this for about 15 years. Even when she came to New York to stay with me in the summer one of the first things she did each day was to buy her lucky number (813) and some scratch off lottery tickets.

It didn't matter where she was, Dotty wanted to play the lottery.

While I was taking care of her in Delray Beach we would go and buy the lottery tickets each day.

And then it started.

Dotty would say, "I need to go buy the lottery tickets". I would answer, "we already bought them". Her response, "no we didn't".

I would then show her the tickets. This only confused her.

Shortly thereafter she would say. I have to go buy the lottery tickets. So I would show her the lottery tickets and try to explain that we had already gone and bought them.

Soon she would become angry and mean. Often she would end up in her bed, curled up in a ball, and refusing to come out of her room.

The cumulative act of my explaining and trying to reason with her had the exact opposite effect of what I was trying to accomplish.

I was caring by using my brain. My real world brain. And it seemed to backfire on my over and over.

The cumulative effect all the way around was that Dotty was becoming meaner and harsher.

Get out, I don't need you, I can take care of myself

she would scream at me.

My own reaction was often negative. And the vicious cycle of complete and total discombobulation continued.

The more I confused Dotty, the meaner she became. Explaining something to a person with Alzheimer's is overwhelming. Too many words.

Often the explanation is too hard for the person living with dementia to understand.

If enough time goes by, they don't remember any of it, and then the episode can and will repeat itself.

Not surprisingly, it is easy for a person living with dementia to conclude that it is

"you" that are out of their mind.

Why wouldn't they, you keep talking and explaining something that never happened. Or, so they think.

So why wouldn't they conclude that it is you that doesn't know what they are talking about.

I finally realized it was each one of these acts that was causing us to lead a miserable life. The cumulative effect.

In Alzheimer's World I started to conclude that I could create a paradigm shift by reversing my own behavior and reactions and the cumulative acts I performed each day.

I finally realized that I could not defuse Dotty's confusion by explaining why she shouldn't be confused, or by trying to engage her in a conversation about the "errors" in her thinking.

So I decided to do the exact opposite of what I would have done in the real world.

Instead of trying to explain to Dotty why she did need me, or why she could no longer live on her without me, I took an exact opposite approach.

I put my arm around her shoulder, put my head on her head (the head hug), and said, I'm not going anywhere.

It worked.

It completely diffused her. It calmed her down. It calmed me down.

She stopped telling me to get out.

This was one of my first great successes as an Alzheimer's caregiver. A success that lead me to believe we could shift the entire Alzheimer's paradigm over time in Alzheimer's World.

I came to a simple conclusion -- I had to become a guide and a leader.

I had to introduce the cumulative acts.

I soon learned what I needed to do was to create a safe, secure, and trusting environment for Dotty.

Isn't that what I had been doing all along? No. Not for a person living in Alzheimer's World.

Over time, I slowly introduced a series of activities and personal behaviors that were designed to create a secure, trusting environment for my mother.

One thing I did was to create a very specific routine.

We did the same exact thing every morning when Dotty woke up.

In fact, we started doing the same exact things around the same time of day, all day long, every day.

If you saw the movie Groundhog Day, you know what I mean.

Dotty would wake up, and it would be the same day, every day.

Each act was intended to lead to the next act. Each act was designed to nurture Dotty, and also to do the kinds of things that were good for her brain and memory.

The most amazing aspect of this aspect of caring, the cumulative acts, is that not only does it nurture the person living with dementia it also nurtures the caregiver.

I was nurturing myself right along with Dotty.

I learned that

the cumulative acts I performed each day were the acts that made the difference.

This my fellow readers is how you leave the burden behind.

I learned and continue to believe that care giving can lead to great Joy.

Some of what I knew on this issue, before I started caring for Dotty, came from the book Care of the Soul.

"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest." 
-- Thomas Moore.

Be kind, be gentle. If what your are doing is not working try doing the exact opposite.

When in doubt, go for the head hug.

About Author

Related Articles

Alzheimer's Reading Room
The Alzheimer's Reading Room