Lewy Body Dementia Day Lewy Body International, founded in 2022, is comprised of organizations from 11 countries. January 28th is designated as Lewy Body Dementia Day by this group of organizations dedicated to working with people affected by this disease. They form a cooperative alliance to share knowledge to build awareness, to offer resources, andContinue reading “January 28th: it’s not Alzheimer’s”
Author Archives: TheRealTamara
Why do I
It’s my private pain, I avow. It feels a little unseemly to be airing it so publicly. I’ve admitted to oversharing. This daily note-taking and sending it out to all of you – isn’t that major information-overload? It has also felt like I was invading Burt’s privacy. He’s not sharing the intimate details of hisContinue reading “Why do I”
«Do I love you?«
I’ve just said, “I love you” in response to his conversation. I did not understand what he said. “I love you” is a standard retort. It reassures me/him. The minute after I affirm my love for him, I doubt myself. Why do I run from the room, leave his bedside mid such conversations? I stateContinue reading “«Do I love you?«”
The balance sheet
What’s become easier in Burt’s last decline? We feed him. No more bowls of food flung across the room. No spills, either. It’s generally tidier, I guess I would say. I value the sense of peace and intimacy I get from serving him this way. All his food needs to be pureed. This can beContinue reading “The balance sheet”
A treat?
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”
