May 30, 2021
45th Wedding Anniversary

My day began with coffee and a sign

I didn’t sleep well last night, my mind was racing and thinking ahead, bathed in a sea of heart palpitations and high anxiety. Why was I so uncomfortable? I had the visit well planned: I picked up cookies for the staff and cookies (bite sized) for Robert. He loves those chocolate Quadratinis. I picked up a bouquet of flowers for Robert, for next to his bed, and two more bouquets for the staff, for the reception area and for the nurse’s station. People in the helping field need to feel appreciated: I figured we’d all celebrate.

 

I prepared a folder of photos: I scanned and printed photos from our wedding, photos of some friends, photos of Robert taken by his friend Alan years before all of this craziness began, when he could walk, talk, smile. I included photos Alan had sent me of Robert in his elementary school. I included photos of Evan, when he was a baby and as his current iteration. I included a photo of our friends, Ted and Magdalena, people we adored, whom we looked forward to spending time with. Their daughter called yesterday to say she had seen her dad and he spoke so highly and lovingly of Robert. And then she told me he had passed, on Wednesday, having lost his fight with cancer.

But I won’t tell that to Robert.

I was on a quest to rattle his brain and drag it into the present.

This is the first time Evan went in with me: he had been vaccinated and felt more at ease, however, he too was anxious at the thought of seeing his new, different, and not improved version of his father.

It was an interesting visit. A holiday Sunday, pouring rain. I was hoping, I was praying, that I wouldn’t lose it like I did the previous time. You see, I have been figuring things out. I was abandoned. I was left high and dry by the person who was going to take care of me, who despite his own limitations, drove me to doctor’s appointments, who shopped, who did, who took care of, who pushed me to get out.  He, despite his compromised ability to walk, drove my mother and her aide for her macular degenerations shots. He took me to Target to shop for my mother and helped me drag tons of paper goods up to her apartment. It wasn’t easy for him but he did it. He didn’t complain about being “the chauffeur.”

He wanted me to get him a chauffeur’s cap.

So I came in kind of breathless, with my heart pounding and they hadn’t brought him down yet. I unloaded flowers and files and pens and post-its to label the wares and stop my hands from shaking. It was already about ten minutes into the hour when they brought him down, on that small bed with wheels, his head propped on a pillow, his feet in special booties to prevent bed sores, his child-like sized arms sticking out of the black Tee-shirt we bought at Flushing Town Hall that said, Queens Jazz, with the J that formed a stylized saxophone. He had on the sweat pants I delivered a few weeks before. He was not worn his glasses since he returned to this a few months ago.

And there the three of us family members were, at a table filled with flowers and notes and a folder and photos, re-introducing ourselves, identifying ourselves from behind masks in a small area of the reception space, surrounded on two sides by windows and  rain.

I remembered, on that day, that wedding day, Robert had written me a love poem, poetic vows, and for many years he lfet me little notes and words of love.

I made a big deal of our anniversary, I pulled out photos, “look at you, this was you in 1976!” And remembering what the woman in the video said about talking to people with dementia, don’t ask a lot of questions, tell a story: I began the tale of our wedding day. On that day we had to pick up the cake at the Lorabie Bakery on Kissena Boulevard, down the street from our apartment, in his Plymouth Valiant which was a bright blue and had no air conditioning. We were told that the cake would be fine if it were put in the wheel well in the trunk. We are talking about a multi-tiered wedding cake that had to be planted in a hole in the car and once at our destination, removed. In one piece.

I am not sure exactly what happened; who put the cake in the well in the trunk, how it was done. I think it was someone or someones from the bakery who helped initially. We drove to our destination, his father and step-mother’s house a few miles away in a lovely area over the city line where the azaleas were screaming fuschias, reds, whites, in blooms all over everyone’s front yard.

I have repressed the visualization of the removal of the cake from the trunk of the car. I don’t remember who took it out. Somehow I think Robert did the deed but one person could not handle it. It is a blur. A happy blur on a cloudy day that enabled us to have an outdoor ceremony without sweaty heat in a garden surrounded by friends and family.

I had been widowed, he had been divorced.

It was a new merging of life that led to a delayed honeymoon of six weeks in Italy, my first time abroad, he was already a seasoned traveler.

By this time, I had broken the rules and held onto Robert’s hand which was riveted to his armrest.

Robert listened to me, he stared at me for long periods like he was trying to match my words to inner movies and weave the memory into a substantial woof and warp of synapse. I kept talking, telling memories about the photos extricated from the folder, from so many periods of time: I was afraid he would be overwhelmed but he seemed to take it all in.  –photos by Alan Teller

 

He made no comments.

I asked if he could see the photo of him I held up, I asked if he wanted to hold it and he said, “No…it’s fine.” He continued to stare, to make sense. His eyes lit on each one and ping-ponged, pulling out the details.  He couldn’t identify Ted, poor Ted, our wonderful friend, he couldn’t identify his younger self in photos. I held up recent photos supplied by his friend, Alan, and said, “This is you. We just had dinner with Alan and Jerri at The Mill Basin Deli in Brooklyn. Here’s another photo of you, not sure where it was taken but you were happy. Always happy.” And then the photo of him from about 10 years ago, a school photo. “Look at this nice photo of you, how handsome you are!”

“Quite,” he said.

At some point I took my hand off of his wrist and picked up his hand. I put my hand in his and he grabbed it tightly as though he now remembered what to do, what hand holding is all about and for a long time he gripped me so hard that it was borderline painful.

I had told Robert’s sister I would call her, as I did during my first visit so she could talk to her brother and I turned to Evan and said, something like “Want to call Wendy and have her say hello?” And Robert said, “non-sequitor.”

And I said, well, Wendy wants to say hello (that was pre-meditated)…on Robert’s part that was very astute, because to he didn’t know there was a plan to make that call, and he was engaged in looking at the photos. To him, he couldn’t see the meaning of turning and asking for Evan to call while he was looking at photos.

We got Wendy on the phone: unfortunately the area we were in was not quiet and there was distraction and it competed with the call, but just like when he was eyeing the photos, he listened, his eyes going up and down, side to side, envisioning. He yawned behind his mask. It was a somewhat hard to hear but she told him a little story, and when it was over she said, “I love you.” And before we hung up she said “goodbye Robert,” and when cued, he said “goodbye, Wendy.”

It was touching.

We were permitted to stay much longer than the 20 allotted minutes but were had to vacate and allow another patient to meet her family.

What was reinforced of my observations is that Robert’s receptive language is strong: he knows what is going on, he listens and his comments are short and appropriate and often higher level language, but he needs prompting, as though he lost the social cues of conversation. Was this due to Covid? Is it due to dementia? Does it really matter?

Before Robert was taken away, I pulled out the school photo portrait and told Samantha, the aide, that I wanted it tacked up to the cork strip above his bed so that whoever came in could see the Robert who needed to be seen.

I believe every patient, in every facility, should have such a photo on their door or in the room, visible to the staff. A photo that screams “This is me, not the broken person in front of you.”

I still try to analyse and make sense of what I see. As we disengaged, I said “I love you,” and he said it back, cued or not, I was too emotional to think beyond the moment. I waved as he was wheeled away and said, “Wave, Rob,” but he didn’t.

I was happy having what I had. And then, like earlier in the morning, I began to lose it. Samantha said, “don’t cry, mama.”

Then the cookies, flowers, and photos were gone.

And so was Robert.

 

The previous post, “Bio” has been revised.

 

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

The previous post is here 

The next post is here