So, how does she feel?  How does Mary Ann feel?  How does she feel that she needs to push a button to be able to do the simplest of things?  I asked her.  Understand, Mary Ann does not talk about feelings.  Mary Ann doesn’t talk much at all.  It is often hard for her to gather her thoughts and put them into words.  In fact, sometimes she is convinced that she has said what she was thinking when nothing at all has come out of her mouth.   She wonders why I am asking her again. 

How does she feel?  One of my jobs is to determine what she is feeling by assessing the elements of the situation, by remembering how she has reacted in past to similar circumstances, by looking at her face, by noticing her body movements, trying to find my way to what she is thinking, but not saying. 

How does she feel?  This time I just asked her.  I asked her how she feels when she presses the button.  It was apparent that she was trying to think of a way to respond but struggling to get to the thought and the words.  I formed the words for her so that she could answer yes or no. 

One of our barriers to communication is my unceasing need to ask either/or questions.  “Do you want a Turkey and Provolone sandwich, left over pasta, or scrambled eggs for lunch?”  “Yes.” she responds.   “Which?” I say.  Her next response?  Silence.  Was her “yes” to the first of the three, just a little late in coming?  Was her “yes” to the last one of the three?  Actually, she is bored with the default lunch setting, Turkey and Provolone, Fritos and a Pepsi.  Leftovers are by definition unfit for current consumption and an offense to Mary Ann’s palate.  It must be the scrambled eggs — my last choice since it means actually using a major kitchen appliance (the one with burners and knobs rather than the one with the little door and buttons). 

I read a book called LIfe in the Balance, by Dr. Thomas Graboys.  He has Parkinson’s and is moving into Parkinson’s Disease Dementia (a Lewy Body Dementia).  Some parts of his book could have been written by Mary Ann.  The part that sticks firmly in my mind is his description of trying to communicate.  He struggles to find the words, put them together, and get them out of his mouth before the time has long since passed for his reply to be relevant to the conversation. 

I have learned that communication works best when the question is a yes or no question.  I have learned that trying to intuit what she is thinking, then saying the words and asking, “Is that what you mean?” allows at least the possibility of finding our way to the thought in her mind that is seeking release. 

So this time I simply asked her, “How do you feel when you press that button to call me for help?”  I formed a couple of answers, “happy that I am coming to help, unhappy that you have to bother me, or some of both?”  (I did it again, an either/or question!)   Seeming to discern some non-verbals when I said “both,” and expecting that to be the answer, it was clear to me that the “yes” was to, “both?”

Apparently, she, too, has a love/hate relationship with that little electronic doorbell.

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