this is our life

On this dreary morning

I awake to notice the slide show on one of my screens. I greet the first image with “Good morning, Burton.” The next with “I miss having you around, darling.” As the pictures go by, I tell Burt how I feel in his absence; that I miss holding his hand and kissing him.

It’s a long litany of what is lost since he’s been gone. So I finish reciting it as the photos come back around for a fourth go.

I am not complaining. Not to him and not to you.

This is my greeting and an acknowledgment of my love for him. I feel the good fortune of knowing how much he loved me. I flick on the video of our conversation at the rehab to hear his voice.

This was the best possible way for me to start my day.

Rules are rules

There was a fierce snow storm many winters past, and Burt and I, restless with cabin fever, went to 65th Street for dinner.

Mind you, Burt had a no-go-snow policy but I guess the exception proves the rule. This outing was memorable for the high greying icy mounds at each corner.

On this corner, we were preceded by an old woman on her walker who climbed the iced pile at the entrance to Silver Star. We looked at each other shame-faced at our trepidatious steps.

Despite what we witnessed and the fact that we’d been out in stormy weather, Burt never backed off his prohibition against walking out in snow.

The journey

You and your spouse are on this journey together, and apart.

You stand by his side, but his path is not the same as yours.

Lewy Body Dementia is a disease built for two, as I had often observed over the years.

When your spouse is stricken, you and s/he are both in it for however long it lasts. My dementia journey with Burt lasted about five years.

My journey by Burt’s side was not the same as his. He was experiencing it very differently than I was. He was the one stricken by this illness. I only had the privilege of caring for him. He had to suffer through its many symptoms. I only had to cope with the symptoms.

It is a desperate fact that I couldn’t do anything to change what happened.

It is a desperate fact that I could not do enough to make his journey easier.

I was on the outside of Burt’s disease. He was inside it.

It didn’t take his delusions nor his hallucinations to make it clear that LBD was different for him than it was for me. I was on the outside, he was on the inside.

I could only stand by him and do the best I could to improve his quality of life.

It is a happy fact that I did do my best to make his journey the best it could be.

Pictures

The Burt Blog

When I started this blog, I was “working” other sites, sharing my thoughts on a variety of topics.

I was reluctant to breach our privacy in such a blatantly public way. Burt would be more exposed than I and I had some concern for his dignity.

My decision was cemented by two facts. Lewy Body Dementia needs more exposure and it was LBD Awareness month when I launched. Burt’s illness and his care had been occupying me for many years. I thought writing would be a relief and a way of sharing advice.

It has been.

Writing about our journey has morphed into a forum on which I explore missing him.

And honoring his memory.

Things change

New York is a dynamic town.

I discovered today that it’s Deutsche Bank [not Constantinople, er not Time Warner] Center. Shocking, these changes. Burt and I spent a lot of time at the Time Warner Center enjoying dinner or a jazz performance or both. For our anniversary or Valentine’s or a birthday one year we went to Dizzy’s Club for a celebratory evening. If memory serves, it was a wonderful Marilyn Maye performance, and a delicious meal.

My walk through Central Park, entering at 59th Street, just across from the Deutsche Bank Center, took me past the Wollman Rink, now the City Pickle[ball court]. Another unexpected change.

There were some things that stayed as and where I remember them. Plus ça change… you know. The Pond was as it used to be, I think. I know that Burt and I sat by that pond some 30 years ago on a holiday.

The Park has gotten a great uplift, making it tourist-friendly. Its arcs have been spruced up, its paths cleaned.

There are maps and audio guides to make it more welcoming.

Where our paths didn’t cross

The Sherry Netherlands on Fifth Avenue today

This was a part of Burt’s work history that I shared with you recently. The Sherry Netherlands was home to Kim Novak, a celeb he did not get to meet on his delivery route.

Burt’s delivery job at the camera shop on 58th Street in the 1950s brought him to the Kodak plant on the corner of York and 72nd Street. Kodak was still there in 1974 when I moved into the coop near the East River.

Sotheby’s replaced the Kodak plant at some point and was there when Burt walked me home on May 3rd in 1990. In the years we lived together at 531 E., we used to lunch at Sotheby’s rooftop cafe pretty often. I hear that Sotheby’s will move to the Breuer Building, once The Whitney, and WCM/NYP will take over at York/72nd.

One summer when I was perhaps 7 or 9, my mother and I spent the summer at Swan Lake. As was the custom, my father came up on weekends.

Burt spent a summer in Swan Lake as well with his mother and the same arrangement for his dad’s visits. I am pretty sure it was before his family started going to the bungalow colony in the Catskills. I also doubt that our stint at Swan Lake overlapped.

On a rare occasion, I went to a soccer game. My father took me and Pelé was playing for the New York Cosmos. Since Pelé was prone to dramatics, it was hard to determine if I witnessed the same game Burt and his older daughter attended.

Our paths might have crossed that day, at least in my movie script, to wit, Burt is seen in the aisle crossing past my seat on the way to get a drink from the concessions.

A jog to my memory

When I passed a firehouse on W 19th where a fire truck was going on a call, I had a recollection.

Long ago. Burt and I were passing a firehouse; one truck had just left and a fireman remained in the doorway. Burt engaged him in conversation and in minutes, we were looking at the gear. After trying it on, at the behest of the fireman, Burt affirmed that it was remarkably heavy.

“I don’t know how they get up and down the ladders,” he said.

Memory can be so random and spontaneous.

Burt’s stories

Burt always loved talking. Thanks to this gift of gab, I had heard all his recollections before he retold them to me after he got dementia.

I knew about his teen loves, the two Marcias, and his guy friends Paul and Eddie. I heard about his after-school jobs at the camera shop and a grocery.

Burt had told me about his thrill at making a delivery to Kim Novak at the Sherry Netherland. He hoped to see her but her maid took the package of photos at the door.

In the summers, he worked as a soda jerk/ short-order cook in what Jews of that generation called the mountains. He had even served bacon and eggs to Henny Youngman at one time.

When his boss refused to pay him his due, Burt walked out. Burt went back to Brooklyn where he met his cousin’s best friend.

She said he was too young for her but she had a sister. Burt was married to that sister for 24 years; they had four children, 2 boys and 2 girls whom I consider my daughters.

They divorced and Burt had a six-year interim relationship before we met. He was not a man to live alone.

Burt enjoyed some fifty years on Wall Street. He worked all over; every firm but one went out of business.

He was proud of his experiences. As well he should have been. He started as a runner. He became a stock loan clerk. He worked on the floor of the Exchange at some point. He was an options trader when we met, working at one of the old renowned firms.

In the breaks between jobs on Wall Street, Burt sold pipes to plumbers and supers at a Harlem supplier. He had a short gig driving a dry cleaner’s truck, too.

Ultimately, we worked together in the business I had started for some 5 or 6 years. I closed that business in 2016. Burt had stopped participating a few years before that. He spent his days walking around town while I worked; he was in his 70s and had earned a retirement.

Near the end

During what proved to be Burt’s final decline, he welcomed the company of some hallucinatory friends. His first experience with hallucinations had been of little people occupying our studio apartment; that had occurred at the beginning of our run-in with Lewy and those little occupants annoyed him.

Now, he was having serious, intense conversations with someone or ones in the ceiling. They were apparently disembodied but often their presence distracted him from conversing with me. He would politely excuse himself as he turned to interact with a buddy over his head.

I found this endearing. All of it. The polite disengagement from our chat. His turning to speak to the other. The conversation he would continue with the imaginary pal.

I know that I found Burt’s demeanor sweet and it charmed me. He was so engrossed. My heart melted. I think I can explain my reaction as coming from love.