When I speak of Burt’s return or of an upswing, I am grading on a curve. After his recent declines, he has not achieved clarity, coherence, or cognitive functioning. He tells me of imagined trips where he met people with wonderfully unlikely names. He insists I bring Tamara to him when I say, “I’m yourContinue reading “Down down up”
Tag Archives: #day-in-the-life
Confusio n
Let’s look at what being confused is really like. I think we often feel that it’s a pleasant state or, if not quite pleasant, a not-unpleasant one. You look around, and things don’t make sense, but you know, who cares: It’s all good. In this assessment, confusion is confused with the “no worties” state ofContinue reading “Confusio n”
Rest
There is considerable chaos Among the Chux on his bed.He moans, complaining as heSleeps. If the dreams are hardI will hear their wild stories inThe morning as he awakes toShare the narratives of hisImaginings and the pains hisMoans express. Yet his sleepIs fulsome, generous, relaxed
Management
Most nights, I’ve been going to bed at 8 o’clock since I can never be sure if Burt will awake in the middle of the night. We’ve had several 4am chatfests. I am generally bone tired by 8 from keeping farmer’s hours. I awake early, thanks to going to bed early. It’s a cycle. SleepContinue reading “Management”
In the public eye
This occurred to me today: It is not fair that I have violated Burt’s privacy in describing our journey. I have shared his delusions with you; I have lamented his decline; I have exposed his hallucinations; I have described his terrors and his joys. It should be enough that his Lewy Body Dementia diminishes him.Continue reading “In the public eye”
The things we still share
Much is lost as LBD progresses. That doesn’t mean we’ve lost everything to this disease. We still exchange affection in words and deeds. We kiss. We hold hands. We express how very very much we love each other. Often. He still says thank you when he wants to show appreciation. More importantly, Burt still knowsContinue reading “The things we still share”
Our outdoor weekend
This morning, Burt asked me what I was doing yesterday. I said I was in the park with you. “I didn’t see you. Why didn’t you come say hello?” It now occurs to me that Burt is antsy in the park when he doesn’t realize I am with him.
Conjuring Dickens
Not only is Burt emotional (as documented here before), but he is capable of having a multitude of conflicting feelings at once. It was the best. It was the worst. All on one occasion. He has no filter, so he isn’t shy about letting me have it. Nor in the least non-plussed at sharing aContinue reading “Conjuring Dickens”
Harder=Easier
It’s hard to explain. It makes little sense even to me. But… There is something about the challenging symptoms and behaviors that, as they pile on, invite a more vigorous response. He has wilder delusions, more vivid hallucinations, less coherent responses, and my capacity to deal is supercharged. Yes. I have bags under my eyesContinue reading “Harder=Easier”
My guy
Exasperating though he is…. It’s a long shift when early rising and a later bedtime turn the day into 16 hours. In much of this time, he is totally and naturally confused. His conversation, as I may have mentioned, is a constant deposition of theories and ideas. There is an insight occasionally which jars meContinue reading “My guy”
this is our life 