Nov 5, 2011

Seven Years of Learning How to Cope with Alzheimers Disease (Part 2)

In order to become an effective Alzheimer's caregiver there all kinds of things you must learn. Three of the most important are listening, observing, and comparing behaviors.

By Bob DeMarco
Alzheimer's Reading Room

Seven Years of Learning How to Cope with Alzheimers Disease (Part 2)
Most people think that they are good listeners. Now this is something I know a lot about having studied communication in college and graduate school. Try taking the listening test some time, more likely than not you will be surprised by the result you get.

Listening is a skill. An acquired skill. It takes lots and lots of practice to become a good listener.

For example, if you are already thinking about what you are going to say while a person is still talking -- you are not listening.

In the case of the Alzheimer's caregiver, if you are getting bent out of shape while a person living with dementia is engaging in a repetitive behavior you are not listening, observing, and comparing.

You have to learn to become a sponge, and you have to view the nonsensical things that Alzheimer's patients say as water. Suck it up.

Note: I actually wrote this last year. I am coming up on the eight year mark soon. So I though I would bring a few articles back up before I write about the last year.

Repetitive questions, meanness, and a strong desire on the part of the patient to go home are behaviors that are experienced by most Alzheimer's caregivers. If you are seeing these behaviors you are not unique, and neither is your Alzheimer's patient. These behaviors are part of the disease, the illness -- they are symptoms of Alzheimer's disease.

You need to pay attention to what Alzheimer's patients say and do. You need to observe the good and the bad. If you observe closely you will begin to see patterns of behavior. If you see the patterns then the symptoms of the disease will start to make sense.

Once you recognize a symptom as a symptom it will be easier to accept the behavior that comes along with Alzheimer's disease.

I know this might sound a bit crazy. So let me put it this way. You need to know what is what. You need to understand what is what. You need to know that the stuff that is driving you nuts is part of the disease, and not an intentional act of the person suffering from Alzheimer's to drive you nuts.

If they could stop doing the same thing over and over -- they would.

You will also need to learn to compare before Alzheimer's disease behavior to after Alzheimer's disease behavior (after the patient started suffering from Alzheimer's disease).

In other words, is the behavior you are observing part of the disease or is it part of the persons pre Alzheimer's disease behavior?

If the behavior is new and different, or if you never saw it before, its a symptom of Alzheimer's disease. Its part of the illness and not a part of the person you know.

Here is one thing I learned about Alzheimer's disease. Often the person suffering from Alzheimer's will give you the exact opposite answer of the answer they would have given you pre Alzheimer's disease.

This is part of Alzheimer's World. New and different behaviors that really contradict what you would have expected the person suffering from Alzheimer's to say or do -- before their brain got sick.

My mother's new found Alzheimer's behaviors used to frustrate me. Now they fascinate me. Alzheimer's disease is pretty interesting when you start to think about and understand it. By the way, I am not saying I like or enjoy these all of these new behaviors.

I mentioned in Part 1 that my mother was meaner than a junkyard dog -- after her brain became sick, not before.

In the beginning when she would get mean, I would be mean right back. Once I realized this was only making things worse, I tried reasoning with her. That didn't last long. It is very difficult, often impossible, to reason with a person that doesn't remember what they said a few minutes ago, and doesn't remember what you keep saying over and over.

After I went through all the strategies to combat -- yeah fight -- the problem I decided something had to change.

I finally realized that I could not change Dotty, nor was she able to change on her own.

I finally realized --
Something had to change and that something was Me.
I finally realized I had to learn an entire new set of communications skills. The skills necessary to communicate with someone suffering from Alzheimer's disease. This wasn't as easy as I thought it would be.

Keep in mind, I had been communicating with my mother for more than 40 years. So not only did I need to find a new way of communicating with my mother, I also had to learn that the way I was used to communicating wasn't going to work.

In a way, and this might sound odd, the way I was used to communicating with her was bad. I started to think about it as a bad habit. So, I had to get rid of a bad habit (unlearn), and at the same time form new habits (relearn). This took double the effort.

Unlearn, relearn. Break a bad habit. Not easy to do. Remember.
Something had to change and that something was Me.
It took time and a lot of practice to perfect my newly needed communications skills and to break old embedded habits.

Lets start with the word -- No -- as an example. I believe that the favorite word of most people suffering from Alzheimer's disease is NO. Why not. Its short and the easiest word to remember and say.

Like most of you, when my mother would say NO I would fold up and give in. Quit so to speak.

Finally it dawned on me. My mother rarely said no to me before Alzheimer's. In fact, the opposite was true. Whenever I would say lets do this, or lets do that she would almost always say YES. She trusted me.

There was also another embedded dynamic that I had to change in learning to deal with the word NO.

I am the child and my mother is the parent. So when your parent tells you NO it usually means no and that is it. I think this helps explain why so many Alzheimer's caregivers still think NO means no when it comes to someone suffering from Alzheimer's disease.

In Alzheimer's World NO has very little meaning. Even though it is the most frequently used word in the Alzheimer's World dictionary.

My mother was saying NO to everything.

Its time to pee -- NO.

Its time to take a shower -- NO.

Come on get out of the car we are going into the store -- NO.

Why don't you go down and visit Jim and Ruth (something my mother did daily for years) -- NO.

Why don't you call Josephine -- NO.

Maybe I should have named Alzheimer's World -- NO World.

Most Alzheimer's patients say no to anything that requires effort. Or, requires them to make a decision.

Soon enough, I more or less stopped believing my mother when she said NO. In some ways I learned to ignore the word NO. I just don't respond to the word NO. I don't say anything. In fact, I more or less pretended she said Yes. Sometimes you have to trick your own mind to get on with the task at hand.

Now, I don't even bother asking her if she wants to go into the store. I know if I ask her, she is going to say NO. Or make up some excuse that is the equivalent of NO. So why bother.

I don't say anything. I get out of the car, walk around, open the door, and stick my hand out palm up.

On a good day neither of us will say a word. She will just get out of the car.

Nonverbal communication seems to work better than verbal communication when dealing with a person suffering from dementia.

The nonverbal communications in this example are all of the actions I take as I get out of the car and the most important nonverbal communication occurs when I stick my hand out, palm up.

Time to pee -- hand out, palm up.

Time to take a shower -- hand out, palm up.

Don't expect this to work the minute you try it. Or even the first many many times. Just keep trying. Keep your mouth shut, don't get all exasperated. Stay positive.

You can also add something the Alzheimer's patients wants on to your sentence. For example, time to pee. Hand out, palm up, time to pee, and they you'll get a nice snack (something to eat). Very Pavlovian once you get the pattern set.

Be patient. Remember its up to you to change, they can't. Let me know when it starts working.

End Part 2.

Also see Seven Years of Learning How to Cope with Alzheimer's Disease (Part 1)

Related content.

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,101 articles with more than 452,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room