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 autism or dementia.

I had not thought of theater for potentially disruptive audiences as a thing. One of the barriers to taking Burt to a ballet, for instance, is my fear that he would be restless.

A “relaxed performance” takes that anxiety away. I plan to suss out this programming for us.

In the meantime, I need to add a more “relaxed” aspect to our TV viewing. I am preparing to accept that Burt might feel like talking through a film.

Time to relax.

Our outing

Courtesy of Lenox Hill Neighborhood House photographer

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.

It is hard to commit to, but clearly, the right thing for a happier LBD journey.

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 she missed him. He has trouble with dividing his loyalties.

He complained at being mistreated by her most of the afternoon and evening. I said I didn’t want to hear about it. [Perhaps not an advisable or standard procedure, but he’s leery of my apologies.]

He shared his woes with the doorman and his PT. He complained about me. I took her part. The PT left, and Burt said, “Guess what? I love you again.”

This morning, he was chatty and cooperative. He had me call the aide. He left a voice mail for her.

He apologized. “My dementia,” he said, “made me act not so smart.”

I am proud of him. I am sad he’s this aware (and sorry the awareness comes after the fact).

This is one lousy disease, and he and I both know it.

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, resourceful guy you married? A glimmer and a glance, but he needs so much and understands so little. He, too, is lost in all those losses that you see. Reduced.

Take pride in the glimmers. Buck him up as best you can.

A foot massage and rubbing cream on his back is a physical connection he feels and enjoys.

Telling him how much I love and care for him usually works too.

Maybe not today when he’s sure I am not on his side. It’s been a bad, hard day.

Today, I tried to curry favor by reminding him to tell his PT that he had been a champion ping-pong player.

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 the two friends who brought them, Burt thought they were 2 women sitting behind me.

He whispered urgently for me to come closer. He was genuinely unsettled.

I noticed that for Burt, the balloons in the living room can be at once both birthday balloons and 2 scary women conspiring.

I untied them and took them out to the compactor room.

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 with that.

Recently, he’s once again experienced this confusion. He was as sanguine about it this time.

In fact, when it occurred the other day after a nap, he just about accused me of gaslighting him. He said one of us was crazy. I reminded him about the hack the doorman taught him; Burt thought it was midnight, but our doorman pointed to the sunny day to prove it was noon.

Not enough. He wanted to know if I had read about people like him (the ones with Benny Blue) having trouble knowing the time.

I found a poem, I had written about time that I thought would not prove more distressing. [I have written many poems about the loss of time or memories and my feelings.]

I read A Life, In Sum to him, saying it was dedicated to him. He seemed to find it soothing.

He asked for more evidence that he was not alone with this affliction of time. I texted a friend who also cares for a beloved with dementia. She sent an anecdote to confirm.

Burt’s mood changed instantly for the better.

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 positive by-product of his diagnosis. But lord, I miss being able to just argue with my husband.

The sublimation of the ego is also a necessary part of dealing with your pwd.

That’s what “don’t take it personally” teaches us. Burt can tell me I am the best and the worst practically without taking a breath. I don’t take offense, although I do take it seriously.

Everything he says to me is treated with respect.

My other word of wisdom is that: Without love, this journey would be impossible. But I acknowledge that “Patience and love don’t always naturally go hand in hand.”

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 always tough- to -standoffish in my stance with the world. Now, I, too, am emotional. Grief-stricken at all the losses I witness in him. Grateful for help and support.

Touched by the care and concern of friends and acquaintances. Moved (often to a teary state) by his resilience and fortitude.

It’s a bumpy ride.

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 that she calms him down. His insights keep surprising me. It’s what I value about his aide, too.

In the evening we went out and I wrote a poem. It was short. It was about the moment we were sharing.

I read it to him. Skipping a beat, maybe, he got it!

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