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 meantContinue reading “Burt deserved the extraordinary [redux]”
Author Archives: TheRealTamara
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,Continue reading “Dear Reader”
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 wasContinue reading “He was such a Fan-boy”
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,Continue reading “Expensive”
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 forContinue reading “Dx”
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 oneContinue reading “One day”
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, IContinue reading “Forgotten?”
Down from the mountain
Is that what caregiving feels like? Racing down, unsure of the brakes, one second-guess away from taking a wrong turn. It certainly might. Caregiving can take your breath away as if the journey is an adventure. It can also have you holding your breath. It’s a profound and transformative experience.
We were there
What is the best concert you have been to? The concerts we saw together, they were all magnificent because we were there. There is no best when it’s all great.
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.Continue reading “Forever”
this is our life 