this is our life

What’s next?

The declines are small things, almost unnoticeable.

As you give care, however, those little indications don’t go unnoticed. At least not for long.

It is the unremarkable that catches your attention, or rather niggles at your consciousness.

It suddenly occurred to me that Burt’s acceptance that I hold the water glass for him was part of decline. He would object to my giving him water if he weren’t sick with this awful disease.

It’s a small thing, and it took me many days to notice.

It’s just one of the little ways in which Lewy steals him away. This may be why I so treasure his more combative behaviors.

There are lots of experiences and feelings I won’t share with you here. They are genuinely intense and hard to communicate to anyone who is not in the throes of caregiving. Those of you who are, have seen many of the toughest spots.

Burt’s difficult behaviors always throw me for a loop and threaten my hard-won equilibrium. (Ha!) They come and go.

It is a Lewy roller-coaster, after all, and sometimes it feels like Burt has redesigned it for maximum intensity.

There is one kind of intensity that is particularly rough for me. I am a “fixer” by nature. I want to make things right.

Burt’s moods vary, but when he’s low, I am desperate to make it better. I realized that I really want him happy, and when he’s down, I am distressed.

There is a touch of selfishness in that. A happy Burt is an easier Burt.

It is also heartbreaking to hear him bemoan his illness.

When he does, I have to acknowledge and commiserate rather than poo-poo his feelings.

None of that is easy. For either of us.

I frequently have to remind myself that he’s in this mess with me.

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 and dismay. I feel that I am not qualified for the rigors of this job. On other occasions, it is an opportunity to find my better self.

Each day brings fresh challenges. Some days bring unexpected delight; my love shows some uncanny insight or is particularly sweet; I respond to a difficult moment in a way to deflect it and get a happier outcome for both of us.

I am deciding, preparing, and guiding both our lives. I do the best I can. do I learn and hope to do better every day.

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, he told me how nice I was.

I’ll take it.

He also told me that he wanted me to have a party for my birthday. He can’t do the preparations, he said. I need to send out the invitations myself. “I don’t want to invite people you don’t like.”

He told me he really enjoyed his party. That, too, made my day.

He had gone from trying to figure out how to get up and out of his bed (and nearly not making it) to being able to call up his OT. He had a long, elaborate conversation with her in which he thanked her for referring his PT to him.

He also said he had good news that he and Tamara were no longer fighting. Burt told me that she was happy to hear this; it had bothered her when we didn’t get along.

More good news for that moment.

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 dementia and with that cognitive decline, lack of commonsense, a different perspective on the logical. It should be clear he is a changed man.

It’s tempting to ignore his more nonsensical exclamations. In fact, I try to ignore those. Unfortunately, they are part of who he has become. I realized that I didn’t know who he is becoming and maybe should stop avoiding “meeting” him where he is.

Sometimes, there’s that glimmer of who he was. It comes as a flash of anger or a moment of love.

I have spoken of how very emotional. he is. He has always been sentimental. His LBD has given greater scope to all his reactions.

This morning, I realized I needed to listen more intensely. There is a man I don’t fully know expressing himself.

Getting to know him in all these facets is what I owe to our relationship.

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 is it true, but it’s the reassurance he needs. And deserves.

Many of my blogs are hopeful, and the old business standby, “best practices.”

Can I do better? Working on it!

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.