Sep 10, 2010

Alzheimer's World, No, and the Reconnoiter

What would they have said before they had Alzheimer's? If they would have said Yes, then start by assuming No means Yes.


Original content the Alzheimer's Reading Room

Living in a world filled with Alzheimer's is disconcerting for the Alzheimer's caregiver.

Imagine living in a world where most things are upside down and backwards. If you are an Alzheimer's caregiver it won't be hard to imagine, you are already living it.

Disconcerted. Perturbed. Perplexed. Confused. Bewildered.

Ever FEEL this way.

By Bob DeMarco
Alzheimer's Reading Room

Take a good look at the words above. In Alzheimer's World each of these words has an attached feeling. A negative feeling.

The way I see it, Alzheimer's is out to get you. The YOU in the sentence refers to Alzheimer's caregivers.

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Alzheimer's wants to bend you out of shape. Make you feel bad, sad, angry, or fill you with a sense of hopelessness.

Stop and ask yourself -- how is the Alzheimer's doing?

If you answered it is doing a good job of making you feel sad and angry, then its time to do something new and different. I suppose this is called change. Or maybe its time to reconnoiter.

Reconnoiter? You might be thinking what the heck does that mean? For me reconnoiter means -- recognize and change.

So the other day I wrote -- Why Let a Tiny Two Letter Word Deter You. If you listen closely to the audio part of that article you will hear my mother say "No" or "Oh No" seven times. Finally Dotty says, I'm hungry. At this point I have the "hook".

If you listen closely you will hear me describing lunch -- twice. You will notice I am talking very slowly and pausing on each part of the lunch.

You will also notice at the very end of the conversation I marry going to the pool to eating. I basically said, we will go to the pool and when we come back we will eat. Then when I ask Dotty if she is going to the pool she says -- Yes -- twice.

Dotty said NO seven times. I now suggest you go look at this video which was taken about an hour after that conversation -- Dotty Live a the Pool (Video). You'll notice that Dotty is in the pool and that she is a happy camper.

Here is something I know. Dotty loves the pool. She always has. Before Alzheimer's, she would go to the pool on most nice days. So what really counts. When Alzheimer's Dotty says No. Or what I know to be the fact -- Dotty loves the pool. Do you think I actually believe Dotty when she says NO over and over, No, I don't want to go to the pool?

Alzheimer's Reading Room


Is is possible that NO means Yes in Alzheimer's World?

My first point. I know from my experience in Alzheimer's World that more often than not Dotty is going to say NO. I say time to pee -- she says NO. Let's go to the pool -- No. Do you want to go visit Josephine -- No.

Here is something I learned from the readers of this blog. Most Alzheimer's patients say -- No.

Do they really mean NO. What does the word NO mean in Alzheimer's World. I know this -- it doesn't mean what it means in the real world. As far as I am concerned when I hear the word NO its time for me to take one big step -- the step into Alzheimer's World. When I move into Alzheimer's World the word NO does not bend me out of shape like it can in the real world.

Why? Because I know the word NO doesn't mean anything. If the word No doesn't mean anything why would you accept it as a real response?

Lets face it. Most Alzheimer's patients don't want to do anything. Or at least it probably seems that way to most of us.

I mean if they say no a 100 times it must mean they don't want to do something. We conclude this because we are thinking like we think in the real world. If both the Alzheimer's patient and the Alzheimer's caregiver were living in the real world this would make good sense.

So I ask you. Did the world change for the person suffering from Alzheimer's? Are they different? Do they say NO to things they use to say Yes too? Do they say No to activities that they use to enjoy doing? Do they say No more than any other word they use?

Topic - The Secret of Getting a Person Living with Alzheimer's to Take Shower


No is a tiny little word. When your brain is shrinking and your memory of what you use to enjoy doing goes away it is very easy to say No. In fact, No is an easy word to remember and its an easy word to say. How many four syllable words is your Alzheimer's patients saying these days? How many complex thoughts or sentences are they putting together? Zero?

When they say No, do they ever explain to you why they are saying NO? Or, do they just say No as soon as the words come out of your mouth?

Here is the most important part.

Do you accept the word No in the same way you did before the person had Alzheimer's disease? Let's make this simple. Would they say NO in the normal course of events before they had Alzheimer's disease? Or is more likely that they would have said Yes back in those days.

Let me back up a bit in time. On the issue of the pool I need to make this clear.

We went over a year where I could not get Dotty to get into the pool. We would get to the pool and she would refuse to go into the water. Period she would not go in.

After thinking about this I decided to try and do something different. Instead of going to the pool and getting set up in a chair, I would just march Dotty directly to the steps of the pool. She would be resisting me all the way. Literally yelling at me.

When we arrived at the steps to the pool I would take off her little pool coat and tell her to kick off her sandals. A short battle would ensue. Finally I would coax her on to the first step in the pool. She would sit down in the water but refuse to go into the pool. She would tell me in no uncertain terms that she was not going into the dame pool.

I would go in and start swimming around. Sure enough. Dotty would slide into the pool and I would getting her walking around.

Soon Dotty would be telling me how much she loved the pool. She would ask me why we didn't come to the pool every day? She would tell me -- we are coming tomorrow. When it came time to leave the pool to go home would you like to guess what Dotty would say?
"No, I don't want to go home".

Next day comes around, I say to Dotty -- let's go to the pool. Dotty says, I am not going to that dame pool. We get there, I am not going into that dame water. After she gets into the water, Why don't we go to the pool everyday? We are coming earlier tomorrow. No, I don't want to go home.

Now I just march Dotty right up to the steps of the pool, take off her pool coat, get her to kick off her sandals, and she steps down and into the pool. My sister Joanne might find this surprising. Last time we all went to the pool together Dotty was still refusing to go into the water. Now? Right in every time. The pattern is established.

Of course we now have a new pattern. Dotty starts shivering when she puts her foot in the water and tells me it is freezing. She actually shivers.

When someone with Alzheimer's disease says No start by asking yourself this simple question.

What would they have said before they had Alzheimer's? If they would have said Yes, then start by assuming No means Yes.

Time to Reconnoiter.

When you hear the word No, learn to think -- here we go again. Learn to chuckle. If you chuckle you'll feel happy instead of frustrated. Embrace the word NO. Let them say No until their hearts are content. Slowly paint the picture of how wonderful it is going to be if they engage in the activity you want them to engage in.

When you paint the picture with your words speak slowly. Engage the person that has Alzheimer's in a conversation. Let them say No, No, No. Just slide right throw the NOs and keep painting.

Try a hook. Explain to them that the activity leads to something they would never say No to -- like food or ice cream.

Get out in the world and live your life. Make a little 30 second video with your camera and put it up on YouTube. Send the link to your family and friends.

Did you enjoy that little 30 second video of Dotty in the pool? I put some music on it in case you missed it.

It time for you to start saying No to Alzheimer's. Time to learn that Alzheimer's World is an upside down backwards place where No means Yes.

Its time to start reconnoitering your life.

Please understand this. You might have to try over and over before you find the "key" to turning No into Yes. Don't get frustrated. Don't give up. Keep on trying. Try different approaches, not the same old approach that isn't working -- over and over.

Sooner or later you'll turn NO into action. How do I know this? Because I did it.

I am confident that you can do it too. Very confident.

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Original content Bob DeMarco, the Alzheimer's Reading Room