Watching your love wallowing in confusion, delusion, and hallucination is hard. Even heartbreaking. Hearing that somewhere in there, he knows of what he suffers is worse. His understanding may lack exactitude and science, but he is aware. Commiseration is the best and the least I can do. Knowledge of his condition is imperfect in everyContinue reading “Is there anything harder?”
Tag Archives: #dementia
Birds gotta
There is a compulsion inherent in Burt ‘s symptoms. Erratic behavior and disorganized thought lead him into patterns. We bounce back and forth between adulation and despair. The hallucinations are so much a must-be that it brought us into a fascinating discussion the other day. Burt told me that he thinks there wasn’t a fireContinue reading “Birds gotta”
Cognitive decline
The way in which Burt’s reasoning works these days is odd and irregular. Much of his thought processes take him in divergent directions. He sees no contradiction. If I weren’t so stricken by his illogical theorizing, I would find it all quite fascinating. As it is, his decline (euphemistically and paradoxically called disease progression) justContinue reading “Cognitive decline”
Rhythms
You and your spouse have a dynamic. It is likely, nay certain, that that dynamic will change as dementia takes hold. If you are like me, reluctant to let go, wishing it weren’t so, you will try to keep the rhythm of your relationship. It isn’t there. Sadly. They tell me acceptance will make itContinue reading “Rhythms”
Support
There is a unique and uniquely helpful support group offered by New York alz.org. I have been participating in this wonderful writers group this past couple of months. Each session, we are guided by helpful prompts to explore our experiences in the caregiving journey. We then take some 15 to 20 minutes to write itContinue reading “Support”
Understanding
It’s nice when Burt gets the gist of my writing about him. When it contains the promise of my love as in the poem I created for him the other night, he’s a happy audience. So much of what I say is distorted on its way to meet him that it can be a frustrationContinue reading “Understanding”
The good and the…
When I blog about Burt’s Lewy, I am not sure that I am being respectful of his dignity. I don’t know how he would respond if he knew I was sharing his worst moments as well as his best. I share much of our life experiences in the spirit of caring and love with whichContinue reading “The good and the…”
The gift
His hand is so much bigger than mine. I feel protected holding his hand, and yet I know it’s my job to protect him. When he was first diagnosed he denied the diagnosis. I thought if only he knew it would be so much easier. I could justify the decisions I had to make, explainContinue reading “The gift”
Literary illusions/alusions
In the beginning, just before we got his diagnosis, I would describe our life in view of literature. The comparison to Ionesco fed my worldly aspirations. Rhinoceros also kind of described where Capgras was leading us. Of course, Groundhog Day also fit the bill when repetition was a regimen. An attempt at absurdist wit wasContinue reading “Literary illusions/alusions”
The confusion
It’s hard to resist the urge to say “really? Really, you don’t know that your first wife was named Susan?” Just one of a series of “really’s” that his infliction brings to the fore. As we’re on a high of successes, his confusion is more unwelcome. I feel it like the contradiction pulling me downContinue reading “The confusion”
this is our life 