What prepared me for my role as caregiver

This writing prompt prompted me to consider what life was like during my journey with Burt and where it is now…

Life after your spouse dies has a new landscape. When added into that structural change is the fact that you spent many years as a caregiver, well, that’s a now what moment. At least it has been for me.

If I am honest, I have to admit that nothing readied me for my years partnering Burt through dementia.

I did it because he got ill. I did it because we took vows, that bit about in sickness and in health: I did take that seriously; I had been aboard for the good stuff, so here I was for whatever came our way.

I chose to keep him close and at home as long as I could. As it turned out it was as long as he lived, but it might have been otherwise. It wasn’t a given, and if I had had to put him in care, it would not have violated my vows. I would have taken care of Burt in whichever way was needed. I have no illusion that keeping Burt at home was noble or better than placing him. I kept him at home because I could.

I was privileged to be able to manage to continue his care in his home, our home to the end. I was grateful that the end was not prolonged or difficult. I think his last days were confusing to him but there was no pain, no discomfort, no extraordinary sadness. He seemed okay with it all. And if it was good for him, it was fine for me.

I think that my adjustment to life without having to give care has been a more arduous joirney than my last years with him. I knew where I belonged and what I needed to do while he was alive. And, it’s weird saying this, but Burt in dementia was a fun guy. For the most part. Fun and funny. 

His absence is a puzzlement. I’m figuring it out, but I miss the getting to know you part that I have had to leave behind. I guess, simply put, I miss Burt.

Burt’s watch

Burt bought himself a moderately expensive watch some twelve, 13 years ago.

He was proud of how well he negotiated for his Hamilton; he loved and wore it even when it no longer kept time.

[Let’s face it, by then Burt wasn’t much on keeping time. In fact, he’d lost most sense of time in 2020.]

One of our neighbor’s was my go – to watch guy. We talk about the Swatches I choose to wear. He offered to find me a guy to fix the watch.

When I gave K the wristwatch, I wasn’t sure what I would do with it if/when it worked.

I am very appreciative that K was able to clean it up for me on his own.

Now I know that I want to wear Burt’s watch, just as I wear my engagement and wedding rings. It just feels right. Burt loved this watch.

Friendship

Inspired by an episode of IMO

Burt had been my best friend in so many ways for the 30 years of our marriage before his illness. We shared so much. We went to lunch and we went to the theater. We even worked together.

Listen to the IMO episode where Michelle Obama and her big brother Craig Robinson discuss friendship with guest Julia Louis- Dreyfus.

My long – term, and some new, best friends were a side hustle. We had lunch. We talked. We met in gym classes.

While he was suffering, from the get go, I called upon these other besties.

They pointed me to a diagnosis. They helped him navigate his confusions.

As Burt’s dementia progressed and morphed, I found new and great friends. They emerged in support groups. They gave care for Burt. They were neighbors I had liked but now also depended upon. They were good to Burt.

In Burt’s physical absence, and to be honest dementia creates an absence as it progresses, I have come to rely on these many best friends.

I have found new friends as I re-entered into activities outside of home.

I am maintaining that circle of friends I had for decades, and welcoming new BFFs. That’s the best.

Nearly 12,775 days

As I glance at the photo of our wedding, I say to Burt “That was the best day of my life.”

It was, but actually, nearly all of the nearly 12,775 days I spent with you were the best.

That day, May 1992, came after two years of getting-to-know-yous and adjustments.

It was a life altering 730 days that lead to the moment when we  exchanged I dos.

The committment was already made somewhere around day 151, I would guess. Maybe a little earlier for one or the other of us, but we were there. All in, I’d say.

So in May we confirmed and we certified. The day itself was a fog of disassociated happiness for me –one I only vaguely remember.

But, we’ve got pix and a ketubeh and some marriage certificates!

A last goodbye

As I opened the envelope from Krtil, I held my breath. Inside was a certificate ascertaining the latitude and longitude at which Burt’s cremated remains were set into the ocean.

I had dropped that paper into a drawer so quickly that it took me a full 24 hours for it to register. The “it” that I was slow to accept was the date it certified that Burt’s remains went into the L.I. Sound. The “it” was the finality of the event.

I wanted to know, but I wasn’t prepared for this documentation.

Burton Beck was buried at sea on Jul 3rd at 8:45am. Rest in peace, my dear, dear Burt.

The parade

Are you the parade?, she asked
Not in the parade or at the parade
It was a tremendous responsibility 
Being the parade, she thought. Yes,
She said. I am. The parade, she 
Added. 
Where are you?, she asked. Where
Is the parade, you mean?, she said
Yes. I'm in Bayside, she answered.
The parade, it's in Bayside, near the
Water. I mean, I can see the water 
From here.
The parade was going to have to go,
She said. It was time to move on, she
Added. I am going to have to keep on
Going. The parade is here but soon it
Will have to be in Flushing and then at
Coney.
I'll be at Coney Island, she agreed. I'll
Be the parade, there. Not in the or at
The, but the parade. This was going 
To be all right. It was okay to be the
Parade if she was coming along, too.
She thought.

Children

Craig Robinson and his sister Michelle Obama format their show, IMO, to answer a listener’s question. The issues deal with relationships and the focus is on mental health.

The query, on this episode, has to do with waiting for the guy to decide about having children.

A memory is triggered, as my memories of Burt so frequently are, watching Mrs. Obama talk with Elaine Welteroth.

Burt and I were oldish when we met. Had we been able, would we have had kids?

[Burt really hated that word but he loved little tykes.]

Burt would have wanted us to have a child. Had I been able, yes, I think I would have wanted to share a child with him.

I always erred on the side of not wanting the responsibility. Truly, we might have had very different parenting styles. I know that had we become parents, it would have changed our experience of each other.

Since parenting was not a strong suit, I don’t have to feel the guilt of messing up another person’s life.

We didn’t have to deal with all that bringing up a child involves; that made it possible for us to play together more.

I have no regrets that we couldn’t – I am even glad we did not, but I would have liked having a little Burt. 

Good advice

Some days, Burt is so intensely missed that I walk around in a miasma of loss.

That’s on one day, and it’s fine. It is inevitable that that feeling will come or go or both at once.

Today, I miss him but I’m digging into memories. With the memory the miasma lifts; I am not in that fog of missing-mourning-grieving that some days is paralyzing.

It will go, it will come. It’s fine. I have my memories. I know what I’ve lost, but I cherish what I had.

I was gifted a happiness that now makes me cry, tears of pain, tears of joy. It’s fine.

Depression

Too many losses this 4th of July. Burt is gone. The loss of him is so real, and permanent, and utterly devastating.

While Burt was ill, I saw- out of the corner of my eye- my country dying as well.

Since he’s been gone, I have been focused on a crumbling country.

That’s what this 4th of July feels like, a devastating loss.

I am doubly depressed today as the 4th approaches. Now, I would like to be able to concentrate my focus on my loss of Burt.

F**k $trump.

I’m sorry, Burt. I love you.

Design a site like this with WordPress.com
Get started