I’ve gotten into the habit of dismissing his actions as “poor timing.” He’ll ask for a glass of milk, for instance, and as I deliver it, he will take off for the bathroom or to go lie down. Burt’s rhythm, unlike mine, requires a slower beat. I want to keep things moving. He needs timeContinue reading “It’s all in the timing”
Category Archives: Each day, a new day
Like many of us
I have been tasked with caring for this one breaking and broken man. I am not alone. There are some 13 million caregivers in the USA, apparently, like me. Most of us stumbled into this daunting situation with no prior knowledge. At times, it is an overwhelming job. I can be filled with self-doubt andContinue reading “Like many of us”
Per usual
It’s a premise I have advanced here before. Burt is a flurry of emotions; it’s a symptom of his disease. To say his moods are changeable is putting it mildly. When I came home from my outings today, for instance, he told me how rotten I had been this morning. After a PT session, heContinue reading “Per usual”
Aspirational
Let me confess that I am aspiring to a better path on this journey. I am far from treading that road. I boss him. He hates that. When he “throws me out,” instead of saying “never,” I say “OK see you around.” I need to say “I will never ever leave you.” Not only isContinue reading “Aspirational”
Relax
An email recently introduced me to a concept I had only hoped to see or actually hadn’t even imagined. Juilliard, which holds a wide range of shows the hubster and I had enjoyed over the years, announced a series of “relaxed performances.” The Met museum has regularly scheduled programs similarly geared to audiences with autismContinue reading “Relax”
Our outing
I feel like I am dining out on the fumes of this event. Burt had such a good time, but the memory is not enough. With the picture arriving in my in-box yesterday, I could see that Burt was able to appreciate it. I need to plan another outing for us. For both our sakes.Continue reading “Our outing”
What can I say?
Burt had a miserable day with his aide, I should say substitute aide yesterday. He was agitated. He was nasty. He threatened the police. The trigger is hard to pinpoint. Substitute might be a part of it. She told him no. He doesn’t like no. Our regular carer texted the night before and said sheContinue reading “What can I say?”
All of a sudden
It’s counterintuitive that someone with a degenerative brain disease should routinely hold conflicting thoughts simultaneously. Apparently, this is exactly what happens here. Burt easily entertains opposing and disparate thoughts. It has surprised me before. The other day, after weeks of looking at his birthday balloons and saying how nice it was of each of theContinue reading “All of a sudden”
Up up down up
Burt had two days of the grumps following our outing to the Thanksgiving Dinner and Dance. I realized this was a smaller version of the reaction I had read about, the slide that follows a big event. It was mild if unpleasant. On Wednesday, he told me what he liked about his aide was thatContinue reading “Up up down up”
Paying attention
Is it possible that we are watching too closely? We see declines. We worry. We are concerned with their comfort. We look to manage this disease. We know we can’t prevent the inevitable, but we look to head it off at the pass. Sometimes, when we pay so much attention, we give ourselves more worries.Continue reading “Paying attention”
this is our life 