Monday, 10-25

I visited Robert.

It was the usual drill. My friend was kind enough to drop me off and wait while I went on my journey. I don’t know if you know how very important it is to me to have that physical and moral support. Each time I go I wonder what I would find. I wonder if will be the last time. I sign in, fill out a form, have my temperature taken electronically, make my way down the long hallway and turn right at the elevator. I breathe deeply into my mask, ascend to the second floor, greet the male nurse at the nurse’s station, turn right to Robert’s room and exhale. I take another deep breath and put on an imaginary suit of armor and enter the room. Robert is facing away from the door, watching television. I say, “Hi, Rob!” he answers with a generic “Hi,” and I assume he doesn’t know it was I who called him.

The curtain that partially separates him from his roommate is drawn. I see a walker. His old roommate has left. Someone new is in the next bed.

I find a corner of the Robert’s bed to sit on. We stare at one another. For a brief second I take a breath and  pull my mask down to reveal my face. The act feels obscene, like I am exposing myself on a crowded train, revealing a part of me that must stay hidden. The guy in the next bed gets a phone call. I had never heard the phone on the nightstand ring before, it is loud and jarring. He speaks. Loudly. It sounded like he was speaking Italian. I call Robert’s sister and she competes with the voice that is concealed behind the curtain. The call ends. I fidget. I babble. I get anxious doing my usual monologue. I prompt Robert and he responds. He replies to questions. He responds a few times without my prodding. We stare again. I notice that his nails are too long.

During the whole time we are holding hands. It feels strangely familiar. We haven’t been that connected during many previous visits as Robert’s hands are usually concealed under the sheets.

Whenever we would go out, for so many years we would walk in the street holding hands. In later years I would hold onto his upper arm as if I were preventing a toddler from running off. His upper body was stiff under my grasp and there was a loneliness and sadness in that gesture of holding on to him. He was actually running off, into the oncoming future: he was in danger of falling, and I noted that even if I felt protected while we were connected via hand-holding, it had become an illusion. I felt more and more vulnerable as he became weaker and weaker.

His shirts became too big, his pants were literally sinking. He was diminished.

I felt like I had to stay but I needed to go. I was not there on my own and the dinner hour was approaching. I said, “Goodbye, I love you, until next time.” There was no response.

 

Tuesday, 10-26
Today was the first time in a long time that I was available for a Facetime call; I avoid these calls because they can be brutal. Robert rarely responds or the iPad falls face down into the blanket.

The weather kept me indoors along with a malaise from yesterday’s visit. I always need time to recover.

Today, somehow, was strangely different. When the FaceTime call began I assumed that this would be a typical interaction: Robert would get distracted, the call would end within a few minutes, and I would feel a heaviness in my chest. I could hear the man in the next bed who now sounded like he was on the phone bellowing in Greek. I could hear the noise from the nurse’s station a few feet from Robert’s door.

And then things quieted down.

Felicia, the aide, set up the iPad.

Robert said, Hello, Susie,” at the initiation of the call. Robert was listening to my usual babble. He was taking in information. He was engaged with the screen, he asked if the picture in the lower right corner was him, as if this was the first time he he realized that he was talking with another person, and that one could see oneself along with the person called.  He responded to questions. He made comments. There was a glimmer of his sarcasm.

His responses and comments were often in full sentences.

I would make a statement. He responded: “The bottom line being?”

You are fidgeting and making noise at my end. “Sorry. Consider the fidgeting stopped.”

I made a comment about finances. Little does he know that a huge chunk of money goes to his care. “We are in good shape.”

I asked if he recognized himself on the screen. I told him he lost a lot of weight. “Is that good or bad or in between?”

I mentioned that he lays in bed all day (you’ll soon get the context). “Which is what I’m doing very well.”

And other comments: “We’ve lived a full life.”

We were on this call for about forty-five minutes. I told him that I hadn’t seen him so responsive and engaged in months. I felt a rush in my heart, a feeling of hopeful excitement. I thought aloud that I would call the speech therapist, who decertified him for lack of participation, to reassess him. I explained to him that it might be helpful to try again. And that perhaps he should have a Physical Therapy evaluation, also, the premise being that if one is in bed all day and never moves and all that muscle is lost, one just continues to deteriorate. I said, maybe someone could do some simple gentle exercises to move your arms.I mean, if there is no movement, there is no need for food. And he says, “You’re doing what you think is best.”

Whoa, now I’m thinking we are on a roll, we are getting somewhere. I take the iPad with me all over the house to remind him of what he left behind almost a year ago. He repeats what he said when I was speaking to him from my office and the view was tilted behind me: We have an interesting house. I point the iPad at his vast collections of books, I take it, and him, to the back door to look at what is left of the plants on the deck. Back we go to the living room. I ask him if he remembers the year of the map of New York that is hanging near the enty. No response. I say, 1867, and he says “I was going to say that.”

I ask him, this Rip Van Winkle, if he knows what year it is and he says, 2004. My heart sinks. I give him the right information. Then I tell him the year of his birth, and he says something like, “Why is that so important?” And I say, you should know this information.

At some point I think and I say that maybe, could it be a possibility, that he turned the Covid-curve? All of this change in communication happened post-Covid, never mind whatever dementia, never mind his neurological issues. Could there be a glimmer of a possibility that he could improve? I tell him. I tell him that I am going to make calls for people to work with him. “What people?” Where you are, I say and I call it a rehab center.

I asked if he wanted to read, if he reads the newspaper. He says he does. Should I bring you a book, I ask, thinking of the pile of books I brought home, untouched on the nightstand. Why not? “Maybe we should look into audio books, would you like to listen to a book?” He was interested. For the hell of it, I said, “you know, I haven’t seen you smile in at least a year. Do you remember how? Can you?

No response.

At some point I asked him a question. He thought for a moment and said something like, “can you give me some choices?”
This to me, to be able to verbalize that in effect, he wanted to answer but needed some framing to access where I was going and what he could say, was a sign of improvement. Or was it?

Yesterday, after I left, I took with me, the image of Robert’s upper arm. That picture became part of a bigger, sadder image, a horrifying documentary in my mind, of the end of World War II. Robert was in a tableau, in a scene taken at Auschwitz, embedded in a war photo of one of many poor souls who were liberated from a camp; who was too weak to stand, who would take years to rehabilitate if it were at all possible. One of many who managed to survive but who wasn’t all there. One who was himself but not. One who remembered fleeting details of a former life and who had all but given up hope of reclaiming it. All of that, that image, that story, in my head. From seeing an upper arm. An arm without fat or muscle.

Today I ended the call with an ember of hope that had all but burned out. And then I deflated, remembering the possibility of terminal lucidity.

Terminal lucidity is a dying patient’s final rally and reconnection with those around them before death.

Addendum. Today.
Things rewound to the way they were. Robert stared at the screen and scratched on the microphone crating a loud annoying, disruptive sound. Repetitive action like that is a sign of dementia. He occasional responded, in one word utterances and complete sentences to my attempt at a conversation.

I’m happy to see you, Rob: It’s always a pleasure to see you;

Tell them you want to call me: I guess I could;

You are an inspiration: Thank you.

How are you feeling? Just fine.

If you had a choice of food, Thai or Italian, which would you choose?: I guess it would depend on my mood.

Robert continued to create the noise from the repetitive scratching on the iPad, which as usual, got knocked off kilter and fell on its face.

I gave up. I put on some pieces by Fauré on my computer for Robert, propped the iPad up facing the screen.

And went back to folding the laundry.

 

 

 

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

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