therealtamara

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”

Day into night

Agitation and upset come into every life, but they are harder for your person with dementia. Losing time is a frequent confusion. When Burt first presented with symptoms, the topsy-turvyness of his days was distressing to me. It confused him that it was 7 at night and not the morning, but he seemed OK withContinue reading “Day into night”

Ego

I use this bit of insider knowledge as a tagline in my online communications with other caregivers. Caregiving turns out to be a Zen experience; little by little, we give over our ego to the care. We have to forgo that inevitable clash of egos in which we as couples engage. This is a positiveContinue reading “Ego”

Mellower

Me. Not he. I have become a less bristly me since Burt was diagnosed. Oh, yes, I panicked at first. He was so listless. Now his moods (for examples etc. see I’m so emotional…) give him plenty of volatility to play with. There are lulls, and he can be calm and kind. I was alwaysContinue reading “Mellower”

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”