“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”
Author Archives: TheRealTamara
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”
There’s a method
What snack would you eat right now? My morning was spent toiling over a blender. Lest you pity me my arduous labors, it’s nothing. Really. Cooking was abandoned long before Burt’s diagnosis. He had grown indifferent to what I served. I choose to blame a phase pre-LBD, but perhaps my skills had grown indifferent. SinceContinue reading “There’s a method”
Support groups
Supported was a tangent that derailed my intention to discuss support groups. These have been a vital life-line on my side of the journey. Early on, his first neuro team at Mt Sinai guided me to regular sessions with their social worker. What a gift that was. The social worker from his current neurologist’s officeContinue reading “Support groups”
Supported
Burt has me and his excellent aides as his support. He gets visit from a very caring OT and PT team. He also has a fantastic crew of doctors and nurses from Weill Cornell Center on Aging to keep his well-being on track. It’s not easy maintaining his quality of life at the best itContinue reading “Supported”
It isn’t but
It feels like betrayal. I know it isn’t, but since I say Love is lovlier how could I? Since Burt’s been bedbound, I felt it was time. Since he’s in such a decline, he couldn’t participate. I met with his doctor to file a MOLST on his behalf. We also opted for a palliative approachContinue reading “It isn’t but”
Love is lovelier
Oh dear. The second time around. 🎼 For me, the second time is really the years after diagnosis and the symptoms. I am the second wife, but Burt is my first. And only. I know, I am laying it on with extra schmaltz. There is something to what I heard from a recently widowed LBDContinue reading “Love is lovelier”
this is our life 