this is our life

Accountable

It feels like I should have control over my feelings, my memories, my past and my future.

The jumble sale that is a life can be so much messier than any accounting of it suggests.

Well, in 1990, I did this; actually, I met Burt, so it was a big year. In 1992, we got married.

We have a resume. We created a curriculae vitae for two.

So linear, so straightforward, so factual. We all know that it is not ever that simple.

It took us a bunch of years to sort out the challenges of merging our disparate personalities. The effect was that we melded, enjoying our couple-ness, doing most activities together.

In 2020, Burt was diagnosed with Lewy Body Dementia. That threw a huge wrench in our resume. It split my heart. It changed the rest of our life together. His death was another date on our timeline.

It was unpredictible. All of it. Even the good stuff. The good stuff for which I remain ever so grateful. And the loss which I mourn.

I bought the 45″ TV for Burt. He had gotten us the smaller one a long while back. I am happy with it. The bigger screen seemed to be suited to his watching from his recliner. I don’t watch from his recliner.

In fact, I had gotten both the TV and the big brown chair for him to enjoy when we moved out of our studio into the top floor.

True that the fact that the littler TV not being a smart TV is a disadvantage these days. At the time we brought it into our home we had requested it be stupid.

Who wants a TV that might prove to know more than they do?

In 1990, I did not have a TV at all. TVs in those days were uniformly stupid, so when Burt got one for our home, it had no special powers.

Our TV journey was a long and wind swept road. Never cable, we declared. Instead, Burt purchased whole seasons on tape. I had a suspicion that DVDs were the up and coming technology. We got a player and Burt returned from Best Buy with new releases each week.

Burt was our entertainment tsar. I just stream on the little TV with its XUMO box. My choices are well worn flicks featuring well known, or familiar to me, players.

I saw Fried Green Tomatoes the other evening. That’s an again. My film yesterday was actually new to me, but I always like Edie Falco. [It turns out that I’ll Be Right There was released in 2023.] TV makes me restless, it turns out.

We had gone from no cable to TW to FIOS.

I switched us to Spectrum with side excursions packaging phone and telly. My cable bills were insane. Now, I have one too many screens. If you count the extra cellphone and 2 tablets, it counts as more.

My friend J is advocating for my keeping the big, smart TV over not. I just don’t know.

An essay for carers

Why I will always treasure the healthcare pros who came into our lives when Burt got ill.

There is a diminishment that comes with dementia.

The dementia sufferer and the family who loves him see their quality of life plummet.

It happens over time, but it also is evident early on, sometimes on day one.

The healthcarers- from his aides, and therapists, my social workers to his medical teams- they kept us living our best lives.

Day in and day out, Burt spent a chunk of his day with his aide. The last many months, it was R who provided him both care and companionship. I am eternally grateful to her and will always carry her in my heart.

It wasn’t always easy caring for Burt. I think even he recognized that.

Her love for him was evident to us both.

Earlier in his LBD career, Burt had a slew of home attendants. He initially needed a companion so I could venture out. Many of these many were wonderful, too.

It was his R who saw us through to the end of the journey. She gets special mention.

Thinking about

Blogging about Burt feels self- aggrandizing. Sometimes, at any rate. Not writing about him feels negligent. Like only the blog will document who he was to me.

In the context of our life together, it doesn’t matter how others will remember him.

As his wife, I temper all of the difficult, easy, caring devotion with the wide brush of love. I had a deep dive into his past and a wild ride during his dementia.

In between, we just lived, loved. We fought, and had ups and downs like any two people in close quarters. Sorry, like any two people in a long relationship. Mostly, I remember the fun.

We enjoyed ourselves and each other.

Thinking of…

I am in a bereavement group at the moment. This is my second go at tackling, no taking in this kind of support.

Why not? It’s very helpful talking to others recently bereft. We see the stages so much more clearly when they filter in other’s eyes. I try to be honest with my group, just as I try to be honest with you.

On Tuesday, I said, half-guiltily, that I hadn’t written about Burt in a long while. Truth? It turned out, upon examination, that it had been 4 days. On the fifth, I posted. Two days ago, which now feels again like a long time.

And there are other blogs where I have remembered / mentioned Burt. Today, I had a somewhat unpleasant procedure on my knees [🤞this will prove helpful], and my memory turned to the Central Park Carousel. Burt and I spent one terrific afternoon on the horses.

It was his idea; I do temember that.

I don’t remember if we were just passing by or if he had suggested we go play.

There is a process to grieving, but it is not a clear path. It is circular. It is omnipresent. It brings both pain and joy. When I think of Burt, it hurts, and it warms my heart.

I know the five years during which he had dementia were hard. I know that they gave me so much good to remember. From then. From before. From my good fortune in having him in my life.

Relaxed performance

When Burt said he missed going to the ballet, I really wanted for us to go. It didn’t happen; I heard about a performance geared to the diagnosis on a Friday; the dance event was scheduled for Sunday. I wasn’t able to pivot that fast. I still have regrets.

It wasn’t easy to find accessible performances. There were some resources such as one at The Metropolitan Museum.

The Met holds regular afternoons for patrons with dementia. I did not try attending with Burt who never enjoyed going to museums.

I will get to witness what going to a relaxed performance might have been like for us to go. On Aug 2nd, BAAND Together Dance Festival at Lincoln Center offers this option so I’m excited to see what that could be like.

Without him by my side, I will be only guessing.

Burt’s taste for the arts was pretty much in flux those last years.

Remembering the times we saw a PBS archived ballet and he said “that’s beautiful” makes me smile. I also got some “shut that off”s from him. In flux. And that, too, has me smiling.

Burt deserved the extraordinary

Burt was extraordinary. He and I had lived a happy, carefree, and modest life. We had no ambition to stir us towards greatness.

He had daydreams of coaching a hapless team with me in the dug- out by his side. Sometimes. Not an ambition.

We were impressed by talent and in Burt’s case that meant shaking hands and fangirling. There are opportunities to do this in a city like ours. Celebrity sighting was easy.

Mostly, we just strolled to and from theaters, arenas, stadiums, restaurants. Or, usually, just our neighborhood. He enjoyed.

When he got sick with Lewy Body Dementia, he still enjoyed. I do not deny the challenges- to him, nor to me.

It is not an unseemly conceit to say that caregiving requires us to be extraordinary. While you are in the thick of doing it, it’s just what has to be done. A few of us who are taking care of a beloved are suited to it; most of us just have to. I did what was needed. A lot was. No prizes for that but, it was for Burt, so I am glad I could. I also had help, and support.

In some odd way, Burt amazed me during his disease. I told him about the hallucinations he’d had during the first year; he showed me how well he knew me.

He was intrigued: I did?, he said; he immediately knew what they had been. Burt said I thought it was strange that you let them live there with us. He understood that I would not have tolerated the intrusion.

To Burt the idea that he could have experienced hallucinations was fascinating, but apparently he had wondered why I allowed those pesky strangers in our home.

I met a lot of his greatness while he was sick.

Burt became expansive during his illness. He talked to people he met near our apartment and in the halls of our building. Burt enjoyed. I came to see more and more of that joy in him. It gave me joy. Burt was extraordinary. I got to see just how true that was up close. What a treat! What a joy!

Blame takes a turn

While I’m on the subject, I realize that I can not only blame Burt for his illness. I can pin his death on him, too. He got sick. I adjusted. It was hard. It felt like a different kind of leaving every day.

As if that wasn’t bad enough, Burt died. He left me. That absolutely has to be his fault. Right? Yeah, of course [crazy lady.]

One of the things I marvelled at was Burt’s capacity to have it both ways.

I now, more soberly, reflect that that’s how our brains all work. We can hold more than one and often conflicting thought or idea. Those ideas and thoughts are not always rational. What’s going on in our heads, even without benefit of losing our minds to dementia, can be ridiculous.

Burt knew he was losing his mind – for a sad time, when he would pronounce he had dementia: Do you know what dementia means was his mantra. It was a relief when hallucinations were just visitors; the fraught nature of his disease was no longer his to solve.

You don’t get Lewy Body Dementia because you didn’t exercise or do puzzles. It wasn’t Burt’s fault that dementia is a long drawn-out distressing loss. My loved one had dementia, was ill with dementia, and I lost little bits of him. I lost him little by little. He, Burt, was blameless.

Blame

The subject of blame is proving an inspiration of sorts. I know that blaming Burt for his illness is [was] ridiculous. I also know that it was not an absurd reaction.

I bet that if your spouse received a dementia diagnosis, you might be angry. Not just at the diagnosis but also at him/her. I was angry at him for not exercising. Just for example. Blame the victim.

I was angry with him in the same irrational way I rail against the noise of construction when it interferes with an audio book. Yet, I developed an incredible patience for all of Burt’s quirks.

He had many idiosyncracies way before the dementia made it obligatory, but as his illness went on, he was sweet, he was funny. My heart filled with love for him.

He was blameless. Naturally. Obviously.

Blameless

Burt, due to his diagnosis, has been blameless. Lewy comes with a pass and Lewy was with us for the past five years.

Leave it to me to feel that there is significance in my faulting him for the soap dishes.

I had allowed for the normal irritation at a spouse who made an errant purchase to bubble up. I blamed Burt for the stains on my sink. Stains caused by the rusting metal on the bottom of the pretty dish.

Blaming, that was the key to our setting up an equal footing.

It was how our relationship can be remembered outside of Lewy. My blame did that. Burt had not just been the unwell spouse; he was so much more, for far longer.

I could remember being pleased and irritated by the day-to-day of our mutual past. I could and I would.