May 27, 2010

My Little Dotty Is Still Here

Comedy, Tragedy, Think, Feel, you get to decide.....
By Bob DeMarco
Alzheimer's Reading Room

Today I get asked, does Dotty know who she is? Yes.

The more important question, is Dotty the person I always knew? Yes.

Not once, not for a single second did I ever think -- this is not the person (Dotty) I always knew.

I admit, for a while there, about six years ago, Dotty was really bent out of shape. I really wish I had the courage to tell you some of the really mean and nasty things Dotty said to me. They hurt. They were words that I had never heard come out of her mouth.

It did help that Dotty had never said those words BD (before dementia). This allowed me to understand that she really didn't mean what she was saying. And, if she knew how much they hurt she would not have said those words to me.

It does take a long time to get a good grip and learn that those nasty words are not really meaningful. You do have to practice though, to get that grip. You have to learn and understand that Alzheimer's World is a different place. Different rules apply.

I can't or won't tell you one of the wildest and crazy things Dotty ever said to me. I can tell you this, it really hurt my feelings back then. However, if I did tell you now, I would be laughing. Some X Alzheimer's caregivers do get angry when they hear me laughing while recounting some of our crazier stories.

Comedy, Tragedy, Think, Feel, you get to decide.

People have said to me in regards to their Alzheimer's patient -- this is not the person I knew. I heard caregivers say this on television. I read about them saying this in the newspaper.

In the beginning, I really couldn't understand why they would say such a thing. It shocked me to hear those words. Really shocked my entire body.

After I thought about it for a while, I did start to get an understanding. People cope in different ways. So saying those words is a way of coping. A kind of psychological and emotional safety guard.

In most cases the person speaking these words is angry, in a constant state of angst, or confused.

The look on their face tells the story. The tone of their voice sounds like a cry for help.

This is not the person I knew.

It is not hard for me to understand how an Alzheimer's caregiver might come to this conclusion. Alzheimer's disease is difficult to understand, hard to accept, and is disconcerting.

The behavioral changes that come with Alzheimer's disease cause the caregiver to experience a range of negative emotions that come on with a power that is equivalent to a human tsunami.

Anger, sadness, feelings of hopelessness, and the inability to "cope" are common. Resultant depression is common.

Concluding or believing that the person you know, is not the person you know, is an easy way to make sense of something that is very difficult to understand.

This easy, erroneous conclusion, does comes with a consequence that is psychologically devastating and debilitating. This conclusion brings with it an almost certain outcome -- the inability to deal with Alzheimer's disease in an effective manner.

For a longer more detailed discussion of this topic see -- Alzheimer's Caregiver Lament -- This is Not the Person I Knew


Dotty knows who she is. Dotty is still the person I always knew. Simple enough.

Yesterday, Dotty said, "we make a pretty good team." See what I mean?

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Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room (ARR). Bob is a recognized influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. The ARR Knowledge Base contains more than 4,000 articles. Bob lives in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room