Atilla My Hon after his exertions (aka tantrums and unpleasantness) on an outing this afternoon. My struggles this Friday afternoon, facing a weekend alone with my cranky love, focus on figuring out why going out into a beautiful sunny day causes so much agitation. The agitation makes me fear for his safety and my abilityContinue reading “Why, indeed”
Tag Archives: #day-in-the-life
A new low
Every progression brings a new dread. Burt has Lewy Body. I remind myself, and things could stabilize or revert to an earlier…. There was a glimmer of that last night. For all his earnest outpouring of ideas and his studied tone, most of his talk made no sense. As it is so often these days,Continue reading “A new low”
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”
Lewy is unlike other dementias
Alzheimer’s is an orderly dementia. It progresses in stages. There is a pattern as its awful symptoms afflict your loved one over time. No dementia is easy. They are each unique. Lewy Body is unpredictable. Symptoms come and go. You and your person can be plunged into troubling situations one day, only to have aContinue reading “Lewy is unlike other dementias”
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”
Giving my best. Doing my best
Burt expects me to deliver my best self. He knows it doesn’t always happen. “I’m doing the best I can” is often dismissed as not good enough. Sometimes, it’s met without challenge and accepted. Forgiven or forgotten. The other day, when we established that no aide would be with us, Burt asked me if IContinue reading “Giving my best. Doing my best”
When things change
We have a rhythm to our journey. Like the clacking of train tracks, it tends to be uneven. His mood changes, and his love, constant but as changeable as the seasons of his moods, comes under their fire. It ebbs and flows but always can be seen rippling under the changes. He returns to meContinue reading “When things change”
Calm down
When I am unable to accomplish something with Burt, I don’t stay calm. Burt, sounding reasonable, tells me to calm down. This guidance is wise. My panicking and consequently screaming louder at him tends to have the unwelcome opposite effect. He has done nothing wrong as he is quick to point out. For the mostContinue reading “Calm down”
If I had my druthers…
Today, I had an intensely isolated time to spend with Burt. It was cold and icy, weather conditions that kept his aide home. They also deterred us from venturing out. The short trip to the lobby – just to get out – had him grumbling over the cold. Preparations for that trip took so longContinue reading “If I had my druthers…”
I’m a person too
In the midst of all the losses- Burt is distressed that he has no job, I took his money, everyone in his life feels they can boss him – he will say, “I’m a person too.” This plea for respect and dignity is in part complaint and in part a request. It never references hisContinue reading “I’m a person too”
this is our life 