TheRealTamara

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”

Reconnections?

There is no rewind. Reconnections?

Dr. Google

He’s probably famously the most frequently addressed “medical” consultant. There are lots of caveat emptors that go with his cred. Dr. Google doesn’t know your family history. Doesn’t even know you. May not be familiar with all the possible causes that led to your current plight. All that is to say, I am not referringContinue reading “Dr. Google”

Symptoms?

It’s sometimes referred to as LBD, sometimes DLB, depending on the genesis of the disease. It can progress in differing ways. It can begin as Parkinson’s. It may not and some patients only show the symptoms of tremors and shuffling later. Burt had very little of this. He had hallucinations, severe but not scary, inContinue reading “Symptoms?”

It is what it is

Write about a time when you didn’t take action but wish you had. What would you do differently? Do you dislike that tagline, the one in my header, as much as I do? My dislike for it is tinged with the understanding that it’s kind of, sort of accurate. Regrets are useless. And they inflictContinue reading “It is what it is”