I was inspired by Cynthia Malone’s journal Slammered to look back a bit. I am calling our endeavors a literature of grief. I couldn’t put Cindy’s moving account down until I finished reading.* Grieving is a normal response to loss and so we grieve even before the final separation. Caregiver Teleconnections offered excellent guidance forContinue reading “Early signs”
Tag Archives: #LBD
Sharing
Burt just asked one of our neighbors if he knew about his dementia. Of course he did. Burt said, “It’s the worst.” Our kind neighbor said,”Yes.” Recently, I wondered what Burt’s understanding of his disease actually means. I guess I am trying to fathom how deeply he comprehends that he has a brain disease. HisContinue reading “Sharing”
Getting to know you
I have focused on finding the Burt I know within the damaged man he’s become. Today, I realized that I needed to also look at who he is. It’s time to get to know my Burt as he is now. Getting to know him entails accepting the change. I know, I know he has dementiaContinue reading “Getting to know you”
Aspirational
Let me confess that I am aspiring to a better path on this journey. I am far from treading that road. I boss him. He hates that. When he “throws me out,” instead of saying “never,” I say “OK see you around.” I need to say “I will never ever leave you.” Not only isContinue reading “Aspirational”
Relax
An email recently introduced me to a concept I had only hoped to see or actually hadn’t even imagined. Juilliard, which holds a wide range of shows the hubster and I had enjoyed over the years, announced a series of “relaxed performances.” The Met museum has regularly scheduled programs similarly geared to audiences with autismContinue reading “Relax”
What can I say?
Burt had a miserable day with his aide, I should say substitute aide yesterday. He was agitated. He was nasty. He threatened the police. The trigger is hard to pinpoint. Substitute might be a part of it. She told him no. He doesn’t like no. Our regular carer texted the night before and said sheContinue reading “What can I say?”
More of Less
There is something both cute and heartbreaking when he says “my big chair” with the possessive enthusiasm of a child. This disease hurts every day in every way. It’s full of cuts to the heart, like when you find yourself taking pride in his remembering what day it is. Where is the smart, savvy, resourcefulContinue reading “More of Less”
All of a sudden
It’s counterintuitive that someone with a degenerative brain disease should routinely hold conflicting thoughts simultaneously. Apparently, this is exactly what happens here. Burt easily entertains opposing and disparate thoughts. It has surprised me before. The other day, after weeks of looking at his birthday balloons and saying how nice it was of each of theContinue reading “All of a sudden”
Ego
I use this bit of insider knowledge as a tagline in my online communications with other caregivers. Caregiving turns out to be a Zen experience; little by little, we give over our ego to the care. We have to forgo that inevitable clash of egos in which we as couples engage. This is a positiveContinue reading “Ego”
“I’m so emotional, baby”
We all tend to be so overwhelmed by our own emotions. I should have realized this sooner, but it hit me just now. A young woman was on her phone and she started tearing up when she said, “I feel like….” That conclusion brings me to our LBD partners. They are in a constant rawContinue reading ““I’m so emotional, baby””
this is our life 