Burt deserved the extraordinary [redux]

Burt was extraordinary. He and I had lived a happy, carefree, and modest life. We had no ambition to stir us towards greatness. He had daydreams of coaching a hapless team with me in the dug- out by his side. Sometimes. Not an ambition. We were impressed by talent and in Burt’s case that meant […]

Burt deserved the extraordinary

Life unravels when your beloved is diagnosed with a dementia. It also begins at that point. Begins anew.

Nothing is as it was.

We had a chance at a kind of do over. We were both different.

He really stepped it up in his final act. He was excellent under the enormous trials of confusion and all the scary symptoms he faced. I got to step up in a way, too. I was his caregiver. I gave care. It was a profound experience.

Dear Reader

My superstitions always warned me that this subscription was too long into the future.

2031 is still many years away. For me even 5 years takes me near to my mid 80s. Burt would have been 92 before Aug ’31. Not ancient but neither of us cool enough to follow the Matrix.

Truth to tell, I have never been hip to its content, although Burt always turned to the back page first. He got a kick out of the content.

He was such a Fan-boy

Burt loved meeting actors. It was easily done. This is NYC, after all, and actors walk among us.

My contribution was recognizing the stars. Burt did the chatting.

For his 84th (surprise) birthday party, I invited two actors whose resumes crossed paths with very famous entertainers.

Bob’s stories amused him, but that day he was swept away by other stories.

He shared reminiscences of their Brooklyn childhood with our friend M.

These are the memories that really captured his attention at this event. He had fun with this conversation.

Expensive

The cost of this illness is enormous. Lewy Body Dementia cost my beloved his reason, his connection to reality, or more importantly to us both, his connection to me. And it lost me the connection we had had, my connection with him.

The physical connection became as tenuous as the fragmented reality he suffered.

Affection, love, transformed but it is not the same in the altered state dementia brings. It is both deeper and more fragile.

The cost was monetary, too, as the expenses of care were high and essential.

There are the psychic tolls I suffered too, and ones he must have endured that I cannot recount. There remains what can only be thought of as PTSD. Aging alone does not fully account for what ails my body now that he’s gone. And there is no way to fully assess what that loss has been.

There also, fortunately, remain memories which traverse the many years before illness inflicted itself upon us.

Dx

What’s the most profound piece of advice you’ve been given? Did you take it?

When Burt was first diagnosed, I was sure that his symptoms were acts of willfulness.

It should not have taken a social worker to tell me that he wasn’t being difficult.

Dementia isn’t performative. It’s profoundly distressing, and not just for the healthy partner.

When he’d ask a question for the umpteenth time, he wasn’t ignoring the answer. He wasn’t playing games or giving me a hard time.

The advice I got from the SW who was counseling me was to recognize that Burt was seriously ill.

It took me a while, but I accepted the reality of his condition.

Caregiving for him was so much simpler with these facts in my corner. He simply needed my care. He wasn’t being contrary- although that trait was one of his charms- he was doing his best, and I had to do mine.

One day

Today, I met my friends for a post street fair meal at Matsui and walked home along York. At 75th Street, I detoured to the path by the FDR, the spot commemorated in the picture of Burt above.

Memories stretch in all directions. I have lots of these heading every which way but this one is right in our closest neighborhood.

The FDR was closed for a bicycle run and we went to the walkway just west of the road to watch. The race occurred some three years ago on an early Spring day. Burt was tickled to be watching the bikes go by.

We would have had as much fun, and even the same quality of fun had he been well. But he wasn’t.

That singular fact made this both sad and beautiful, and that much more precious.

Forgotten?

Early in our journey when Burt was in many ways deepest in the throes of Lewy Body, he didn’t recognize me.

He’d ask me frequently who I was. I would answer with that neutrality that hides any disappointment.

From my answers, he assumed that he had several wives, all named Tamara.

From our care team, I learned that he suffered from his own unique brand of Capgras.

After his questioning of my identity, he would flirt with me.

Burt regaled me with an expansive retelling of his life story.

On one occasion, when he finished introducing himself, he asked me to tell him about myself. I told him the story of how we’d met.

Burt said, “you seem like a very nice lady, but I don’t remember you.” I feel the wrench of his words.

It was the first time he had voiced not knowing me, even if his asking me so often who I was tacitly said as much.

It might have been the simplicity of his confession (I’m sorry, but I don’t remember you) that struck me so hard.

Let me warn you that your loved one’s dementia might result in this type of erasure. And it will hurt.

Forever

What’s a moment you wish you could freeze and live in forever?

Sunday, May 3rd marked the 36th year since we met. The moments we spent together on that day are frozen in my memory.

On that evening, we had wandered the city from West 21st Street to a restaurant at 50th and 1st Avenue. As we finished eating, Burt said “I really like you.” I remember how I felt when he was so definite in his statement. There was no modifier, no I think about it.

We walked uptown to 72nd Street from the restaurant, deliberately, at that getting to know you pace.

In so many ways, I have frozen these moments, and really many others from our life together. It’s a gift.

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