Jun 30, 2011

Sundowning at 9:37 PM, 1:29 AM, and 4:27 AM

Something had to change and that something was ME.

By Bob DeMarco
Alzheimer's Reading Room

Sundowning at 9:37 PM, 1:29 AM, and 4:27 AM
The question below refers to the article, Sundowning at 9:37 PM.

Reader J Green asked,
Bob, what was it about her cleaning behavior that produced such anxiety in you. Obviously there was more going on than your mom just wanting to do a little cleaning. I've read you enough to know that you're okay with most harmless behaviors. I feel that part of this story is missing.

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J, this is a good question. I should start by explaining that I was not operating in a vacuum. There were many mean and crazy behaviors that were occuring during that early time period with my mother.

If was not unusual for her to say mean things, or to act irrationally.

Keep in mind, I was still at the point as an Alzheimer's caregiver that I was trying to reason with my mother.

In addition, I had not yet crossed over into Alzheimer's World. Behaviors that I now expect were still foreign to me, and very different than what I had come to expect during the course of my life.

In the particular instance of my mother deciding to "clean the house" at 9:37 at night, this did seem odd and it was out of character. Put it in this context, my mother was not doing any cleaning during the day.

When the nighttime cleaning incidents would take place, it would more or less lead to an argument every time. It would start by my trying to explain to my mother that it was not the time to clean, that it was night time. This would result in her saying something mean and incongruent to me. Ultimately, she would end up upset and so would I.

I think this explains in part why I would become anxious around 9 PM each night. I knew what was going to happen, and I felt like I couldn't do anything about it.

Of course, this was not the only thing going on. For example, my mother was very worried that someone was or would be looking in our windows at night. This is very unlikely. So at the time I was worrying if she was going to start hallucinating about seeing someone looking in, or if she was going to become "extremely paranoid". In other words, was her condition going to worsen (by the way, it didn't).

In addition to this, my mother was waking up at 1:29 AM and 4:27 AM, plus or minus a few minutes every night. At 1:29 she would eat from the refrigerator. Not get in an out of the refrigerator, but leave the door open for an extended period of time. This would cause the refrigerator to "beep" away. The refrigerator has a system that alerts you if you leave the door ajar, or if the door is left open. Imagine night after night hearing the refrigerator beep 27 or more times. Beep Beep Beep, pause, Beep Beep Beep. It seemed as if the refrigerator was getting angrier with each beep. I was.

Again, I would try to explain to my mother, it is 1:30 in the morning, its not time to eat. She would tell me to go to hell.

At 4:27 AM, she would get up out of bed, open the front door, go outside and look around. Every night. I concluded that she was looking to see if the car was there. She could have walked back to my bedroom and checked. She never checked my bedroom after dementia set in, she went out the door and looked around.

My mother was out of whack, engaging in behaviors that I had never seen, engaging in behaviors that frustrated me, behaviors that made me feel angry, and were cumulatively disconcerting.

My angst, frustration, confusion, and anger were spilling over on to my mother. Her craziness was spilling over on to me.

This was not an environment that was conducive to Alzheimer's patient security (feeling safe and secuere), or Alzheimer's caregiver effectiveness.

I knew things had to change. However, there were so many things going on at that time that I had to do in direct concern to my mother's health, current and long term, that I didn't have the time to figure out what to about sundowning and "narly" behavior.

Skip up more than a year into the future, and I finally had the time to fully address the issue of change.

Something had to change and that something was ME.

By then, I had a rock solid foundation of understanding Alzheimer's, had the only treatment available, and had discovered the positive effects of "real" exercise.

I finally understood that I might be living the life of an Alzheimer's caregiver for a long time. This did not disconcert me in any way.

In fact the exact opposite happened, I decided we would live our life, and that Dotty would have the best life possible.

As it turned out, the more we lived our life, as I became more understanding, and learned to get out in front of problems, the easier it became to introduce change into our environment.

Frankly, I like myself best when I operate at the highest, most productive level possible. I decided to work hard and find ways to deal with the life that most caregivers come to expect. I decided to become the best Alzheimer's caregiver possible. I did that.

Now, I want to be the best Alzheimer's caregiver in the World. And while I might never achieve that goal, nothing will deter me from trying.

J, a good part of my success can be attributed to the Alzheimer's Reading Room. I have to be the luckiest caregiver in the World.

The support system around me here is something I could never had imagined. It was not part of my original plan.

I learned to transition to Alzheimer's World. In Alzheimer's World every thing that disconcerted me, now seems normal. A normal part of daily living. Alzheimer's World brought to me the "calm" I needed to deal with Alzheimer's.

So the direct answer to your question J is, I was not always the way I am now. I learned over my life to define problems and solve problems. This was a simple process (for m) that required examining all the facts and evidence, and then solving the problem at hand.

Maybe that is what I am doing today. But, I had to first educate myself about Alzheimer's disease, and then learn that change comes within this context very slowly.

I had to learn to apply the skills I had acquired over the course of my life in a new and very different way. This did require an enormous amount of change.

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,800 articles with more than 602,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room