Published on: June 9, 2013
by Alzheimer’s Speaks:
My name is Michael Ellenbogen and I have been living with AD much longer than most people who have had this devastating disease. I am in need of your help to prove a point. Let me explain.
I have learned that as we progress with Alzheimer’s/dementia, we lose our brain functioning and can no longer think. I am starting to believe that this is not true.
It has now happened to me on multiple occasions where I was asked a question, and I am able to formulate the answer in my mind, yet I found myself unable to verbalize it. Sometimes my mouth may move but nothing comes out. It was the weirdest thing, and I could not understand why it was happening to me. I was aware of what was going on, but could do nothing.
Since that time I have asked 18 other people with some type of dementia, and of them 16 had similar experiences. Two of them said they had not. This makes me think that as this disease progresses our brain may still be functioning, yet it is unable to communicate with the rest of the body, allowing it to have less control than it would normally have. I truly believe I am on to something, and was curious as to how I can try to prove this theory.
Let me give you an example. About three years ago I met the daughter of a man with AD. He was no longer communicating with her because, she was sure, he could no longer communicate at all. Someone suggested she ask a question, and keep totally silent for at least two minutes after. About a minute and a half later he finally responded to her question. From that time on she realized what she had to do and was thankful for that advice.
I don’t want you to think it’s going to be that easy; it will take a lot of work, patience and persistence on your part. Here is what I would like others to try for someone who is in the late stages of Alzheimer’s. First of all take the person to a very quiet room; it should not have any kind of background noise even from things like an air-conditioner blowing. Those noises are real problems for me, and would assume it will be a bigger issue for them. Such noises really have an impact on my ability to process and focus. You should also do this at a time of day that they are not tired. It becomes very challenging for us to try to focus and listen to what others say. It really becomes tiring, and we get burned out quickly.
When you start to speak to the person use short sentences, and pause in between them so they have time to process what you are saying. That is very important. Tell them that you think you have found a way to communicate with them. Tell them you are going to look at them closely for some sort of sign. It could be an eye movement, maybe looking to the right or left or down or up. It could be a smile. It could be a finger moving or a fist being made. It may even be them sticking their tongue out. I would start by focusing on parts of the body that may still show signs of control. You must become a detective and keep looking at various body parts for some sign. It may not happen the first time or even a second time. It may never happen and I could be wrong. But if I am right just think of the benefits that will come out of this for you and your love one.
Reassure them that you will continue to look for a signal and they should keep trying the best they can at their speed. Ask them a simple question like “do you love me? If yes lift your finger or lower your finger”. Again you will need to keep quiet, and observe for at least two minutes. Keep doing this and try this with different parts of the body. They may not have control over certain parts, and that may be an issue. If you do see something make sure you point that out to them and ask them to do it again to ensure they really are responding. If this turns out to work find a way to use that same body part to get yes or no responses from the person. Keep in mind that this may not always work and you may need to be creative. Maybe just keep the finger raised longer if they mean no, or tap it twice etc., but that may be too much to ask.
Also keep in mind if the person has not had any real dialog with someone for a long time this would also take more time. No matter what do not become discouraged, try this at least three different times on different days. Like I said this may never work and I have it wrong.
If this works for a few it makes me believe that we need to treat these folks completely different to the way society treats them today. This will change so much about what people really believe is happening to our minds.
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