… comes with a little anxiety and agitation. His little puff of steam uphill comes with a return to other issues. Burt is a bit more anxious in his delusions; his fears are about someone hurting him. He’s more worried, whereas he seemed so contented during the big decline. I think because his world hasContinue reading “The little uptick”
Author Archives: TheRealTamara
Burt’s ups
There was a decline, and now he is showing a little pick up. A little one but marked by chattiness and some connection. He’s more engaged this week. He appears to know me a little better than he did. And lord, does he love to talk. He is still chatting with his make- believe friends,Continue reading “Burt’s ups”
January 28th: it’s not Alzheimer’s
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”
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? What’s harder?
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.
this is our life 