TheRealTamara

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”

Getting to know you

I have focused on finding the Burt I know within the damaged man he’s become. Today, I realized that I needed to also look at who he is. It’s time to get to know my Burt as he is now. Getting to know him entails accepting the change. I know, I know he has dementiaContinue reading “Getting to know you”

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?”

More of Less

There is something both cute and heartbreaking when he says “my big chair” with the possessive enthusiasm of a child. This disease hurts every day in every way. It’s full of cuts to the heart, like when you find yourself taking pride in his remembering what day it is. Where is the smart, savvy, resourcefulContinue reading “More of Less”

Self-care

For everyone, it’s likely to look different, but this was my day. Things at home were looking to be under control even though my honey was “training” a substitute carer.

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”