It is clear to me that a large fraction of patients with Alzheimer’s disease ask the same questions over and over.
I understand how disconcerting this can be — I experienced it first hand, and I know how it feels.
It took me a long time to understand repetitive behavior and how to adjust to it. I am looking at my Leonardo da Vinci pad and some of my bunkhouse notes right now.
One question I asked myself, why was I allowing this behavior to drive me nuts? I knew it was going to continue to happen everyday until I figured out how to do something about it.
Why couldn’t I accept that this was part of the reality of living with someone who had Alzheimer’s disease? Why couldn’t I accept this as a “normal” part of everyday living with Alzheimer’s?
Seems simple and straightforward doesn’t it?
These kinds of situations and experiences helped me to envision Alzheimer’s World, and then to start formalization my construct of Alzheimer’s World.
For me, there were two worlds: real world and Alzheimer’s World.
In real world, I communicated in the same way that I always had with my mom. I finally realized this was not going to work.
In Alzheimer’s World, the communication was very different than in real world. Of course in Alzheimer’s World there was only one person besides me – my mom. Dotty.
My mom was living with Alzheimer’s disease. One thing that made my mom different was a simple fact – her short term memory was gone, and her ability to remember what just happened was gone.
One thing became clear – using a lot of words to try and convince my mom was no longer going to work.
It is kind of silly to say to an dementia patient – you just asked me. Don’t you think? If they can’t remember 3 little words, they can remember what they just asked you a minute or so ago.
I realized it was foolish of me to expect my mom to remember what I said a little while ago; or, what she said a little while ago. Like when we had an argument. I remembered it. She had no clue what I was talking about. Seems so simple, but as you know, not so simple.
As Alzheimer’s progresses, short term memory disappears. It no longer exists.
Once you accept and understand that short term memory is gone, you should not be surprised if a person with Alzheimer’s asks the same questions repeatedly – over and over.
They can’t remember if they asked a question — once or ten times. You can remember because you are still in real world. Your short term memory is still working. They are in Alzheimer’s World — no memory world.
As I thought about this I came to a simple conclusion. Instead of trying to change my mom and bring her back into my world, instead of trying to fight the change, not only would I accept Alzheimer’s World as a reality, I would go into Alzheimer’s World and learn how to communicate effectively.
In other words, mom wasn’t going to change because she couldn’t. So it was up to me to change and adapt. Sounds simple right? Well actually once I had my head on straight it was easier than I thought. Getting one’s head on straight when it comes to dementia care – not so easy.
Here is the first thing I learned. The fewer the words the better in Alzheimer’s World.
So when my mother asked me — what day is it? The answer is Thursday. Not, I already told you its Thursday or you just asked me that five minutes ago. Thursday.
You know what I learned? I learned that once you learn how to communicate effectively everything becomes easier to do.
I learned you don’t get bent out of shape in Alzheimer’s World when you keep it simple.
I learned something else. Once you finally accept that this is the way it is going to be, you might find yourself laughing or chuckling when the questions keep on coming. You fully expect what is going to happen — in advance. You figured this out in real world — by the way.
After a couple of years I thought to myself. It must be really disconcerting when you don’t know what day, month, or year it is. I mean, how do you think you would feel if you never knew what day it was, or whether it was winter, spring, summer, or fall? You would probably feel nutty and disconcerted much of the time.
So I found myself thinking — this must be really disconcerting to my mother.
I continued to think about it more and more. I started thinking maybe this is one of the reasons my mother became mean or starts acting crazy. How do you act when you become confused?
If your loved one doesn’t know what day it is that must really be disconcerting; and then, think about all the other things they no longer know or remember — it has to be unsettling and confusing. I decided this was a big part of the problem. File this under – understanding Alzheimer’s.
So I added another behavior to my arsenal of communication tools that I used in Alzheimer’s World. If my mother started asking me a question over and over I thought to myself, she must really want to know, or need to know. Maybe not knowing is disturbing to her.
Here is what I started doing. Instead of getting bent out of shape and giving her a completely exasperated response I started doing the opposite.
I walked over, put my arm around her, put my head against her head and said — Thursday. Then I give her a little squeeze.
Obviously over time, I started doing this more often and in different situations.
Guess what I learned? I learned that I was no longer exasperated, bent out of shape, or stressed out. Quite the opposite in fact. I felt good about myself. I felt good, not bad.
So you see, you do have a choice. You can accept that certain things are going to happen over and over. You can come to an understanding that these behaviors are not part of your real world, they are part of a new and very different world — Alzheimer’s World.
Soon you might conclude that you need to start developing some new and different communication strategies to communicate with someone that has Alzheimer’s.
You start feeling good about yourself and soon the person who has Alzheimer’s will start feeling pretty good also. Instead of getting that nasty vibe from you, you will be sending a very different signal — I care.
As you learn to communicate in Alzheimer’s World you will be doing something that is very important. You will be creating an environment that is very safe and very secure. Once your Alzheimer’s patient starts feeling safe and secure they will become kinder and more gentle.
If I treated you with respect and understanding wouldn’t you be kinder and more gentle to me?
Alzheimer’s World is a good place.
Original content the Alzheimer’s Reading Room
The goal of the Alzheimer’s Reading Room is to Educate and Empower Alzheimer’s caregivers, their families, and the entire Alzheimer’s community.
By Bob DeMarco