In my corner

He always cheered for me.

Burt was always my champion, even in areas he personally had no interest.

Zumba classes. My poetry. Things he would never do, although he dutifully and lovingly listened to my poems. He encouraged me. He enlightened me. His insights, some made during the years of his slow decline, were often intelligent and thoughtful.

Burt made the unlikely request that I sing along when music played. It seems he enjoyed my enthusiasm more than he regretted the missed notes.

Burt also had an unerring compassion. Up until the last few months, he always asked after those around him. We would talk about his concerns and issues, he’d stop, holding my arm, “How are you feeling?”

He did much the same with anyone around him. He was genuinely intetested.

He could be so joyful. His goal as the illness progressed was to make people laugh. He often hit that mark. With ease and a wide grin.

Now that his passing has quieted his mirth, I like to think he will always be in my corner; that he will always be a champion of my best interests. Love doesn’t die, my dear, it cheerfully continues to fill the heart.

The process

Grieving is a process that involves and invokes memories.

Thanks to the volubility of my deeply missed beloved, I have lots of memories, even from his childhood.

Burt told me many stories. I learned of the running board on  his grandfather’s truck; the grandfather with whom he planted cucumbers. I heard how he met his childhood best friend while they tried to build a toy airplane in school. His mother sent a note back to their teacher who had said they were fighting in class. No. Burton and Paul are best friends, his mother said.

I heard of his teenage loves and crushes; of later indiscretions; all told with maximum humor and with ease. I got glimpses of his family life; through Burt’s tales, I was introduced to his co-workers, many of whom I eventually met in person. He laid out his past in the reminisces he shared; even after Lewy was with us, Burt recalled Brooklyn, summers in the Catskills, married life in Spring Valley, commutes to Wall Street.

His stories brought me into the scope of each of his decades, included me in his life.

We did things. [Yes, sensual things too like the embrace that caused a driver in a passing car to shout Get a room.] More ordinary things for middle-aged people that included walks to the pier by the apartment on 11th Avenue at 43rd Street. We were pleasantly surprised by a tug boat fair. Apparently an annual event, tug boats, those mysterious and colorful guardians that ferried larger boats, barges and ships into river waters, parade in the waters and around the docks in a festive display. It was fun. We had fun.

We always had fun. And we were middle-aged by the time we met and married. Evidently, we were also playful spectators.

Hockey games, something I never took a shine to, were fun because Burt knew the game and loved teaching me. I came to realize that if there had been no high sticking, the audience would have been so disappointed. We agreed that keeping an eye on the puck was a challenge. We stuck to baseball, a game he had taught me to love, and transitioned our fandom from men’s to women’s basketball.

New York sports is often accompanied by the cry for next year and Burt was a Mets fan. We dragged my father to a triple A game in Pittafield once. Another time, we were chastised for being late for dinner after a visit to the Pittsfield Mets. While in the Berkshires, Burt tried teaching me to drive a stick shift, our rental car that weekend. Another game I never learned.

We liked arenas of various sorts. The Boston Symphony plays outdoors in its summer in the Berkshires; very Greek I think.

Lincoln Center is a grand space to be in and we loved going to each of the great theaters around the plaza. The spectacle of the lights rising at the Metropolitan Opera House always got us.

We always had fun.

Missing

From beginning  to end, it was not a sudden event. It felt like a long journey and also as if it all transpired in a flash.

Dementia slowly steals faculties, alters personality, changes the conversation.

Once upon years before, we shared ideas and interests, exchanged thoughts and had meaningful communication. Once upon… I thrilled at his touch, felt protected in his arms. All that went missing as his capabilities diminished.

Burt took a deep dive into some symptoms early on, and that actually was sudden.

Medications got him back on track, pretty much, for a while. He was less confused, regained memory and returned to an amicable sociability. There was enjoyment and laughter, closeness and care between us. He seemed happy.

Dementia with Lewy Bodies is unpredictible. It twists and turns so when Burt took that last dip, I expected we’d return to higher ground. I also expected that we might not. Burt took to his bed. Was he afraid? Unsteady?

He was content to stay in the safety of the bed. Less and less engaged. The beginning of his end was some four months in the making. Over the weekend before the final end, he appeared to be actively dying.

I had learned that there was such a thing to my surprise. When it happened, I recognized it.

The last four days, he searched for an exit, hands stretched out; he was mostly non-verbal and staring straight ahead. The end was a truly profound experience.

Now, I am left to miss him but with the certainty that this end was to the good. He passed well and quickly and entirely on his own terms. From beginning to end, the journey was long and arduous as well as short and intense.

All of a Sudden

Burt was my companion, my love, my guide, my partner, my pal for so many years and then he started withdrawing. That was not a conscious withdrawal but one he could not control. It was caused by the dementia that was also causing him to lose himself.

Lost and not lost, as I have said, he slowly withdrew from the life we knew. My love, my partner, my companion became lost in the progression of his illness. It was   relentless, the progression. It was slow and it was quick.

I expected its inevitable end. And I was taken aback at how quickly Burt passed, finally away from me.

His last withdrawal surprised me by its suddenness. It’s hard to explain; I saw him actively dying for four days. It should have been evident that he would be gone. It was a relief and an anguish that it happened so soon.

Our haunts

During the early years of the journey, Burt had destinations. He used to love to sit outside the HHS lobby; he befriended one of the security guards, Mr. Phillips, and would converse himself whenever we went there. The route was across the 78th Street bridge over the Drive and down the East River Esplanade. I was reminded when walking S home down 71st today.

I’m wearing his shirt today

On my route home, I went by the back door to the Pavillion, a neighboring apartment building, and was heartened by another memory. Burt referred to their lobby as “the hotel” and would sit there with me or with his aides.

Next stop, the playground at John Jay. We used this space for PT, relaxation, or, on one occasion,  as a meeting place with friends. Burt would wave his hat to chase off the pigeons.

Dear Burt,

You gave me a full happy life.

We were lucky to find each other. Lucky, or destined?

I’m not sure if either luck or fate belong in modern life. Or love.

It was my joy and an honor to be with you each and every one of those nearly 35 years.

Did we have disagreements? Of course we did. We argued like any normal neurotics in a relationship. Life is complicated. As is love.

Did we have difficulties? I consider the sad slide into LBD a major difficulty. I don’t say that to be glib, but to be realistic.

Tonight, I found a small treasure trove of once deleted voice mail messages in a backup file. It was wonderful to hear your voice again. I laughed, I cried. I saved them to a Samsung Music playlist so I will be able to hear your voice again and again.

I am so proud to have been with you during all those years; it was a privilege to be by your side, not just in the before when it was easy, but also over the roughest terrain.

Know that you acted with the utmost dignity and bravery under very difficult circumstances.

I had the good fortune to love you and know that I was always loved by you in return.

As I frequently told you, I love you, Burt. That remains in the present tense.

You will always have a home deep in my heart.

We shared a profound journey.

Thank you.

The theater

We were regulars on Broadway, off, off-off. We attended dance and jazz performances. We went to pop concerts and some opera.

When I string that out like that, I wonder how we found the time.

As he approached the beginnings of his dementia, sitting through a ballet or staying for a show became a challenge.

We had tickets for Hamilton and, at the last minute, Burt bailed. He told me he couldn’t sit that long. Knowing that I had been so much looking forward to seeing this musical, Burt had made a plan.

He and I went out for the traditional pre-theater bite; we walked to the theater and as we got on line to enter, he told me he was selling his ticket. “You go, you really want to see it,” he said. It was too long, he said. “See you at home.” He knew how this matinee would unfold.

After that, for a while, when I got press tickets, he told me to take a friend. I did. I was uncomfortable going without him.

One of the few times after this that he did join me was for A Doll’s House, Part 2. He worried about getting to the bathroom; we were relieved that it was an intermissionless 75 minutes. Our seats were one in off the aisle; I think this concerned him. That was in May 2017. Wow.

The long before had some prelude to what our life would become. It always does. My advice to anyone caregiving now who’s inclined to fret over when and oh my how could I have missed the signs: life is like that, you knew when you needed to know. I look upon that show in 2017 with Burt as a highlight of our before.

There were many highlights in that long before [and many during the years of our life with dementia] but A Doll’s House, Part 2 was a special moment. We went to the theater together. For the last time. The curtain fell and rose on a different life. Together.

Burt has left the theater – is that the Elvis line, or was it building– but now, when I go to see a performance, I carry the memories of lots of other shows we saw together. He’ll be in the theater with me in the spirit of curious anticipation we always shared before the curtain went up.

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