Apr 20, 2010

Alzheimer's Caregiving Not a Bed of Roses for Me

I did feel anger, angst, anxiety, frustration, mentally dizzy and disconcerted, and feelings of hopelessness. I am You.

By Bob DeMarco
Alzheimer's Reading Room

Alzheimer's Caregiving Not a Bed of Roses
Lately, I am receiving emails and some comments here mentioning how fortunate I am that I am not experiencing some of the crazy, bizarre behaviors being experienced by other Alzheimer's caregivers.

I do consider myself lucky and fortunate; however, those comments just aren't true or accurate.

I have experienced much of what your are experiencing first hand.

I did not start writing seriously on this blog until January, 2009. I became an Alzheimer's caregiver in 2003.

I started writing seriously about Alzheimer's caregiving after I started receiving emails from other Alzheimer's caregivers asking me questions and thanking me for the information I was posting on this blog.

Keep in mind, this was more then six years after I decided that the behavior I was hearing and seeing in my mother indicated that there was "something" wrong. Seriously wrong. My mother was officially diagnosed with probable Alzheimer's dementia via MRI in 2004 (after more than a year then searching for the right doctor).

I had a lot of experience before I started writing on this blog. My early experiences with Alzheimer's disease were horrific. It took a couple of years before I decided to do something about the situation and change the dynamic.

Finally, years after the fact I started writing about my decisions, experiences and my own metamorphosis as an Alzheimer's caregiver.

As a result, I did not devote much time to the horror on this blog. I was past much of it. So I decided to focus on the now, the positive, and success. Not where we were, where we are going.

For the most part, this blog is about the wonder and wonderful of it all. I have a hard time being negative.


When I first came to Delray Beach to look into the problem, my mother was meaner then a junkyard dog. This was a new and different behavior. She said some of the meanest things to me that you could ever imagine. It hurt. I knew she didn't mean them, but they still hurt.

It took me years to learn how to label my feelings. Once I learned how to do this effectively, I could dismiss the hurt and pain quickly and realize that it was the Alzheimer's speaking. Before I learned how to do that I was no different then the new born Alzheimer's caregiver that lashes out, reacts negatively, and then regrets their reaction.

Unless you work on your behavior as an Alzheimer's caregiver every day you won't get to where I am today -- cool, calm, collected and accepting. To get where I am right now was a challenge. It took several years to accomplish and I am still working on it everyday.


At 9:37 PM every night (give or take a few minutes) my mother would get up out of her chair and announce she needed to start cleaning. Do you think I found this behavior wacko and disconcerting? I did. It took years to change this behavior in my mother.


My mother would go into her room every Saturday evening and refuse to come out. It didn't matter what was going on. I learned to accept that this was going to happen. This didn't change the fact that it gave me a stomach ache every time. There was noting I could do to convince her to come out of her room. I had to put her meals on the kitchen table, announce that they were there, and then leave the room or she wouldn't come out and eat.

Are you ready for this? She would emerge from her room at 7:07 PM (plus or minus a few minutes) every Sunday night. It got to the point where I would be watching the clock. Then I would hear it, here she comes. She walking into the living room, sat down and acted as if nothing had ever happened.


At 1:27 AM and 4:30 AM every night my mother would get out of bed, open up the front door, go outside, look around, stare off into space, and then come back into the house. Get something to eat, and go back to bed. Every time she did this I had to get up in the middle of the night. Been there?

In the beginning when this was happening I was clueless about Alzheimer's wandering. There was not much available on the Internet on this topic. The newspapers and television stations were not reporting incidents of Alzheimer's wandering like they do today. There was no Silver Alert, no Project Lifesaver nationally. The Amber Alert was relatively new, nationally, at the time.

Fortunately, my mother never used public transportation down here in Florida. If she knew how to use the public transportation system she would have made the break for Philadelphia. My guess is she would have made it to Philadelphia. We would now be famous, and I would be a villain.


Would you like me to continue? How about my mother's major lament -- I am hungry, I'm starving. Or her crazy made up stories that people continue to believe to this day.

I have seen many of the problems that Alzheimer's creates first hand. Of course, every situation is a little different then every other situation.

I did feel anger, angst, anxiety, frustration, mentally dizzy and disconcerted, and feelings of hopelessness. I am You.


I decided that I could change the patterns of behavior. I came to the conclusion that my mother was evidencing many patterns of behavior, many of them bad and disconcerting. I also realized that many of my own patterns of behavior were contributing to the problem.

I asked myself, would it be possible to establish new and different patterns of behavior -- to replace the bad with good?

I thought, why not? Lets do it. What do I have to lose?

As I had a little success here and there my confidence grew.


I knew one of the first things I had to do was get control of my own feelings and emotions. I guess you could say I knew I had to become an Alzheimer's duck, not an Alzheimer's hamster.

I learned how to label my feelings and I wrote about this in December, 2009. I started working on that in 2003 -- Alzheimer's Caregiving Lots and Lots of Negative Feelings. I am still working on this and doing it every day.


One day, I had my big pad out and I started drawing circles. One circle mom, one circle me. I started doodling around the circles. This was the day that I drew the two circles with an intersection. I labeled the intersection of these two circles -- Alzheimer's World. I wrote the words right in the intersection (on the pad). My light bulb went on.

This is when I realized that I needed to learn how to move seamlessly into and out of Alzheimer's World. Once I learned how to step into Alzheimer's world -- to communicate with my mother -- something wonderful and fascinating happened -- the nutso became the normal. Reality became reality. Instead of trying to change reality, fight reality, or hope and wish that things would change, I realized there was a place where things made perfect sense -- Communicating in Alzheimer's World.

I started thinking about that in 2006. By 2009, I could step into and out of Alzheimer's World at will. It does get easier and easier over time.


If you would like to read a series of articles that describe my own metamorphosis as an Alzheimer's caregiver, some of the methods I developed to deal with common problems, how I learned to communicate effectively with someone suffering from Alzheimer's disease, and how I changed go here -- Alzheimer's Dementia Caregiving -- Advice and Insight.


My metamorphosis as an Alzheimer's caregiver continues. I am going to start writing about the more recent changes shortly.

One topic that I want to attack is -- What is more important -- focusing on memory, or focusing on behavior? I am starting to believe we spend too much time obsessing about memory loss, and not enough time focusing on behavior change.

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,300 articles with more than 287,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room