In the course of an hour or so, Burt was holding on tight to his aide’s hand. He took mine with his free hand and continued an elaborate explanation. His chat was freewheeling and pleasant. He’s been sweet like this of late. No arguments or accusations. This is Burt down to his basic self. He’sContinue reading “Basic Burt”
Author Archives: TheRealTamara
Neglect
Sometimes, it feels like I am so torn up over the national outrage as it swirls around that I am not paying enough attention to my guy. Before you voice any alarm, know that I dearly love him. I will always tend to his needs. Love feeds and fuels me, so I am happy toContinue reading “Neglect”
Lonely
Caregiving is lonely. I’m sure I have lamented this in numerous posts. Burt seems like he’s pretty lonely, too. If you have a pwd, your person might also be feeling lonely. I need to be a bit more hands-on empathetic. It’s hard to stick with him when he’s not making sense. He’s lonely even withContinue reading “Lonely”
Short bursts of energy
There’s a support group that «puts the I in caregiver« which I value for its honesty. It’s akin to the one urging us «to be selfish.« I take about 5 hours for myself each day. It’s a necessary indulgence. Let me try to explain what my time away does to benefit me. When I getContinue reading “Short bursts of energy”
Alternate world
If you are living with a person with dementia and particularly this dementia, you know that your person spends much of his day in an alternate reality. There are delusions and theories that give credence to and explain them. Hallucinations are common occupants in the world of your loved one’s with LBD. Burt’s hallucinatory companionsContinue reading “Alternate world”
The little uptick
… 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”
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?«”
this is our life 