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”
Category Archives: Lewy Body
Difficult Behaviors
My love exhibited unusual, difficult behaviors early in our journey. Firing caregivers was one of them. He could be aggressive and combative. I had reason to worry. And wonder. Things have changed pretty much, but I guess as long as he has a progressive, unpredictable disease, I will have reason to worry.
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”
It’s all in the timing
I’ve gotten into the habit of dismissing his actions as “poor timing.” He’ll ask for a glass of milk, for instance, and as I deliver it, he will take off for the bathroom or to go lie down. Burt’s rhythm, unlike mine, requires a slower beat. I want to keep things moving. He needs timeContinue reading “It’s all in the timing”
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”
Our outing
I feel like I am dining out on the fumes of this event. Burt had such a good time, but the memory is not enough. With the picture arriving in my in-box yesterday, I could see that Burt was able to appreciate it. I need to plan another outing for us. For both our sakes.Continue reading “Our outing”
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?”
Mellower
Me. Not he. I have become a less bristly me since Burt was diagnosed. Oh, yes, I panicked at first. He was so listless. Now his moods (for examples etc. see I’m so emotional…) give him plenty of volatility to play with. There are lulls, and he can be calm and kind. I was alwaysContinue reading “Mellower”
Gratitude
It’s Thanksgiving, that Thursday in November we’ve designated as a day on which to be grateful. I am. I still have my Burt. His challenges come with heaps of love and appreciation. That’s to say he is grateful. He frequently thanks me for everything I do for him. He doesn’t forget to be appreciative ofContinue reading “Gratitude”
“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 