this is our life

Midtown west

Our old stomping ground

After the hard years, I get to remember and celebrate all the good years

New York City Center has been restored beautifully.

It’s a bright elegant spot even with all the superb theatrical venues the City sports.

I have been a habituée for longer than you need to know. [Hey, it was home to the New York City Ballet when Lincoln Center was just a gleam in Robert Moses’ eye.]

Ballet Hispánico, *excerpts,* ***Club Havana***, choreography by Pedro Ruiz. Part of Saturday’s En Familia matinee.

As I step into its balcony seats, gazing at the Moorish splendor of its interiors. I remember the many times Burt and I had been at City Center. Although our seats were always in the first row [far-right] mezzanine.

During the Ballet Hispánico show, I note [to self] how much Burt would have enjoyed this ballet performance. I think the tidbit of Carmen.maquia (choreographed by Gustavo Ramirez Sansano, sets by Luis Crispo) would have been a treat for him. But, I know we would have agreed that the piece of Club Havana, with its colors and textured dance, were the highlight.

After the matinee, my friend J and I walk through lobbies from 55th to 57th. This is the tactic Burt would have spearheaded, too.

The hotel, now called Thompson, was Le Meridien when Burt and I used to wander in before heading to a performance. It’s an equally convenient squat for Carnegie Hall as it is for City Center. We even sometimes stopped there on the way to Radio City; although the Hilton or the Warwick where better situated.

This way of bringing Burt along by tickling memory is a habit I am happy to cultivate. It’s doubly nice that pretty much anywhere I go, we’ve been. And I remember.

So many memories, and these of theater outings and walks, are of the best of our 35 years together. I remember….

To soothe

Burt loved tap and step dance, healthy Burt did.

Burt during dementia gave Irish step a pass, at least he did on St. Paddy’s in 2023. I was reminded of this last night while watching a snippet of very enjoyable step dance at New York Irish Center.

In deference to the many times we enjoyed Riverdance over those well-years, I put Irish dance on TV. He was annoyed by it. Oh well. Guess not everyone’s Irish on St. Patrick’s Day.

Music, like dance, went in and out of favor. I had to hit the remote on Connie Francis one evening. That was counter to all expectations- play music that your loved one grew up loving….

Poor Burt, I subjected him to reams and reams of the Top10 from his youth practically every week during the last months. Before that, we did love us some Lawrence Welk on its regularly scheduled PBS revival [sigh, since canceled.] Burt even tapped along with Arthur Duncan while sitting in his Big Brown Chair.

Isn’t It Romantic

I am a romantic. It was not always thus. I had once been a self-prescribed pragmatist.

I wouldn’t be surprised if life with Burt is what turned me into a sentimental sort. I’m sure it has.

When we met, I was determined to find a life partner. I was lonely living alone and it was time. I had set out to do that. «It’s like a job,« my friend C said, meaning I would have to work at finding someone to spend my life with. For me, once Burt and I had found each other, that life together didn’t have to be in marriage.

I am pretty sure that I suggested something like that. “I’m fine with co-habiting.”

Burt preferred committment.

He told me that he’d gotten my father’s goat, as it were, when he told him upon their first meeting that he planned to marry me. [My father’s reaction should be beside the point; clearly, he wasn’t a romantic.] Burt told my father of his intentions before he ever told me.

Apparently, he also told the cab driver who took him home on the night we first met.

When Burt asked me to marry him, it was natural and easy to say yes. I had fallen in love with him and I was committed.

He took the day off from work on his birthday to propose, then to escort me ring-shopping.

Our romance was fun; love was an adventure. Marriage was just us being together.

I guess it’s safe to say Burt was a romantic. A three cards, always the sincere ones, never the funny, for Valentine’s and no fewer than 2 for my birthday, romantic.

When he became ill, I cried as I emerged from the closet where I had stored cards he’d given me over the years.

I was sure I’d never get another caring and thoughtful card from him again.

You know that Burt proved me wrong. He remembered; he went with an aide and bought me two cards; he personalized them just as he’d always done with all his love and with meticulous care.

Burt always inscribed the cards “dear Tamara” and “to my wife” and of course the date; he made them personal, detailing which anniversary we were celebrating, how many years we’d been together.

Of course, I got him a carefully chosen card for every occasion, each year, too. He expected cards to commemorate our life events. He was a romantic, sentimental guy.

He also always appreciated the poems I wrote him, romantic that I am. My poems were not always linked to occasions, and I would interrupt our dinner or a tv show to read them to him. He loved that I thought of him with so much love and tenderness.

He’d be happy to know that I am still writing about him. I guess he does know that he’s always in my thoughts.

He knows, too, that I can’t help talking about him, because under his love and care I turned into a romantic. A romantic who misses him and remembers all our life events.

I have some theories

Burt had panic attacks all of his life.

By the time we got together the anxiety was mostly and as time went on increasingly under control.

Anxiety is one of the symptoms that plague those with Lewy Body Dementia. Burt’s anxiety during his years with this illness was mild although we had some concerns about depression.

My question: are those sufferimg from anxiety disorder, perhaps, predisposed to LBD?

More interesting notes on Burt’s health issues.

He had a case of psoriasis about a year before diagnosis. His skin shed plaques and I would rub him down to moisturize. During the years with LBD, the condition disappeared. Just about 99.9% at any rate.

❓️❓️🤔

We were monitoring an inguinal hernia for several years. Burt did some exercises to subdue it just about every day. This syndrome also receded after a couple of years with LBD.

❓️❓️

The drop in Burt’s blood pressure from high even when controlled by medication to low-normal is a documented symptom of LBD. No question mark here.

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.