Jul 20, 2011

NO Means NO, Or Does It?

The best part is that once you get a success, you start to believe. You start to believe in yourself. You start to believe in the patient and their ability to do.

By Bob DeMarco
Alzheimer's Reading Room

NO. No means No. I mean who wants to force an adult to do something they don't want to do?

I finally learned after years of frustration that NO does not mean NO in Alzheimer's World.

I am not a doctor or a scientists. I am an Alzheimer's caregiver. So these are my own thoughts and observations. Alzheimer's caregiving is not a science anyway, so everyone is entitled to their own understanding.

I learned about the power of NO in Alzheimer's caregiving the same way everyone does. I felt the enormous stress and frustration when Dotty would say NO over and over. She said NO like she meant it, and she said it firmly.

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Meanwhile, I was getting Dotty to do things where she said NO over and over and at the same time did exactly what I asked her to do.

I have the pool video to prove it.

Dotty said No inside the house when I asked her to put her bathing suit on, No as we went out the door to the car, No as we were getting in the car, No at the entrance to the pool. She even says NO I am not going in the pool after she has one foot in the water.

Several years ago, I could get Dotty to go to the pool, but I couldn't get her to go in the water. At the steps to the pool she would just start saying, I am not going in the GD pool. I folded up like an accordion. I just gave up.

Then one day after trying to get her to go in the pool and then giving up something interesting happened.

Dotty was sitting in her pool chair and a women we barely knew came up to Dotty. She bent her knees so that she was at eye level with Dotty, and then started talking to her in a low calm voice. She basically was asking Dotty to go in the pool with her and telling her how nice it would be.

She took her hand and escorted Dotty right into the pool. I sat their amazed and energized. I told myself I would never again take NO for an answer. Not in any situation where I knew Dotty enjoyed doing something before AD.

Why do Alzheimer's patients say NO.

In the case of the pool and the shower, I am convinced that water is invisible and threatening to most Alzheimer's patients. Dotty does tell me in the pool that looking at the water makes her dizzy. Dotty doesn't like to put her head under the water in the shower. She won't do it on her own. So now I say, make sure you put your head under the water so I can put the conditioner in your hair and make it look nice. I say that several times. Now she does it.

Some people think that Alzheimer's patients can't remember anything. I agree. However, I do think that another part of the brain allows Alzheimer's patients to remember patterns or routines that you do over and over. I know people think I am nuts, but I believe it is easier to get Dotty to take a shower every day, then it is to get her to do it once in a while. Anything we do routinely is easier.

Now I also know that it is very difficult to get those routines established. Sometimes you have to use reverse logic to get an Alzheimer's patient to do something. In other words, telling Dotty she stinks or just plain needs s shower doesn't work. Telling Dotty she is getting potato chips after the shower works more effectively.

Why do Alzheimer's patients say NO so often? Lets take the fourth of July barbecue. I would try to explain to Dotty how she had been going to the barbecue for 20 years. She didn't care, she wasn't going. Finally, I asked myself. Does Dotty even remember going to the barbecue for 20 years? Am I confusing her when I explain to her that she loves the barbecue. Maybe she doesn't remember she loved it. So by telling her something she no longer understands or believes am I confusing her?

What would you say if you couldn't understand, remember, or even figure out how you were going to get someplace? Would you say, No?

Maybe when you ask an Alzheimer's patients if they want to go to a birthday party, party, family get together, or an event, maybe they really don't know what the hell you are talking about. Maybe this is why they say NO so easily, so readily.

Maybe the patient doesn't understand that you are going to take them there. So they say NO because they don't know how to get there. Or, where it is. Maybe it is about the great "unknown".

To this day Dotty will tell me almost daily that she doesn't need me. She will tell me she can get anywhere she wants to go on her own. In fact, she tells me all the time she is going to the mall or the store, or to buy a steak sandwich, or candy, all the time. And, she is going without any help or assistance from me. I think that Dotty now thinks that every thing she wants in the world is right outside the door. Why else would she put money in her pajamas all the time? I use to ask her, why are you putting money in your pajamas. She gave a very good Alzheimer's World answer -- she said, you never know. I have to laugh here. She meant, you never know when you are going to need it. The money. That's entertainment.

There are a whole host of reasons why Alzheimer's patients say NO.

When I want Dotty to do something I ask myself, did Dotty enjoy doing this activity before AD set in? If so, as far as I am concerned, its a go. I know she would want to do it no matter how many times she says, NO.

I know this. Dotty took a shower every day for at least 50 years. So I have to assume she enjoyed being clean.

If you keep trying, sooner or later you will overcome the word NO. The best place to attack is in Alzheimer's World. Engaging in activities all day long helps to reinforce the pattern of doing things.

You have to be actively involved with a person suffering from Alzheimer's in everything they do. All day long. Once this level of engagement becomes a pattern it makes every thing easier.

Some times you just have to lead the horse to water. You don't have to say a word. Just perform the appropriate actions. Here is a towel, here are the underwear, here is the wash cloth. Most Alzheimer's patients can figure you at the earlier stages what you do with those thinks. So you might not have to say the dreaded words, you need to take a shower. Its more like show and don't tell.

The best part is that once you get a success, you start to believe. You start to believe in yourself. You start to believe in the patient and their ability to do.

To DO even while saying NO.

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,800 articles with more than 345,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room