I have published a book of Robert’s art works

The Robert update:

Well folks, after a talk with the physical therapist, occupational therapist and speech therapist, as well as the social worker, on Thursday, 3/4, all of my observations made from afar were validated and I learned much more. This is, to me, is the saddest of situations: Robert is refusing to participate in physical therapy. He is oppositional to the occupational therapist. The speech therapist, also observes that tight, jaw-clench, facial grimace and growl. Everyone is scratching their heads; they don’t know what to do. Those who knew him or observed him in passing during his initial intake and stay in December until that second fall, say there is a radical difference. The OT says he has made “a complete 180° change.”

In informal conversation, he can’t respond or recall information. He doesn’t initiate conversation or ask questions. The teacher who stood before students for forty-four years could not recall where he taught or what he taught. Things are at a standstill and he was going to be released from therapies. They needed help and so did I. So, I sent an email with all kinds of history and information about what Robert did, what he likes, where we’ve travelled. I told the team not to force him physically to participate but to try to entice him, especially with music. I sent links to youtube to his favorite music and to my blog with all the art work.

Yesterday I asked him something and he screamed, NO! NO! NO! His roommate could be heard nearby saying, “Calm down, Rob!” I was shocked by this outburst, this reaction, it was so peculiar and inappropriate.

I say to him many times: try to remember there are people around you, you may not realize it but you tend to scream, you sound upset, you sound like you need to defend yourself. You are pushing people away. Let’s practice smiling (he can smile on cue but I haven’t seen him smile once in the time he’s been away and probably not even before for a long time, there is no change in affect.). Let’s practice staying calm. Let’s remember there is nothing to be upset about.

He could tell me his/our favorite place in Italy and the restaurant there. He could name his favorite composer (Mahler). But as I asked him questions he began to become agitated. There’s a limit to how much thinking he can do. A limit to how much he can recall. The man who read The Times cover to cover everyday since he was a teen, who cut out articles to save until they took over the house, who had an interest in anything and everything, is M.I.A.

This morning I tried to tap into higher thinking. I told him that I was asking because he was so smart about these things. I reminded him that we had an issue in the basement with water seepage, that work was going to be done. I said the wall board was disintegrating in an area, there was white powder coming up from the carpet…I wanted to see concern for the issue and for me. But the response was, “How should I know?” It was all about him. Concern was nonexistent.

But, somewhere within him, where no words are needed, there is an artist an an appreciator of music of every kind.

That person who doesn’t need words just needs to be found.

📌The series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey

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