TheRealTamara

The balance sheet

What’s become easier in Burt’s last decline? What’s harder?

Standing in an aisle at Duane Reade, I realize that I won’t be bringing Burt a chocolate treat. He can’t eat chocolates the way he once could. I’ve been breaking a little piece into littler pieces for him, but he’s not getting the kick out of it anymore. Now, I add dark chocolate syrup toContinue reading “A treat?”

It’s heavy

In my encounters with friends and acquaintances, I feel heavy. Physically, of course, I am. It is the sorrow I carry in my heart that makes me feel weightier. This, I think, at each conversation is not the gravitas I hoped to achieve. I have toned down the impulse to spill it all. I noContinue reading “It’s heavy”

Am I repeating myself

When our podiatrist visited, her shock over the change in Burt over two months became my shock. There is no escaping the fact that a progressive neurodegenerative disease degenerates. It’s the only progress it knows. Those of us who are living with it are serially surprised. It often or sometimes takes other’s eyes to showContinue reading “Am I repeating myself”

Teary-eyed

Can you share a positive example of where you’ve felt loved? Burt has always made me feel truly loved. Even these days, when he seems not so sure who I am, I still know he loves me truly. I am entirely delighted by the reassurance of this truth.

Call and response

“Burton Philip… we’re having a good day.” I am quoting the random callout Burt made last night. His conversation is ongoing, and he is addressing someone with questions and a flow of dialog. This is an evening ritual. Who am I kidding? These exchanges can go on all day long. My friend J is right.Continue reading “Call and response”

Letting go

What was true a week or maybe two ago has changed now. It will always change. I can not cease worrying because there may honestly be something worse or just different about to happen. Things are harder with Burt in bed all the time. Have I mentioned that? I know I have spoken of noContinue reading “Letting go”

Call me!

A recent revelation that perhaps Burt recognized me as a presence on the phone was confirmed. Sort of. He heard me speaking with a visitor in the livingroom; the voice led to his asking Ruthy where Tamara was. A kindred carer reported that her husband insisted on calling her on the phone. Like me onContinue reading “Call me!”

The alternating

We got Burt an alternating air pressure mattress. [Amazon carries everything, and Medicare waits until pressure wounds are a dire concern before providing this remedy.] He was lifted (as usual, these days kicking and screaming) into his wheelchair so his aide and his OT could set up the bed. I sat with him in theContinue reading “The alternating”

Imitation

A friend made an objection when I defined a puree as a «velouté.« She suggested it sounded like baby food even when I prefaced it as “ersatz“. Nonetheless, I continue to find the texture of potatoes with milk and lots of butter after a trip through my blender pleasing. And pleasantly haute. These soft mashedContinue reading “Imitation”