this is our life

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.

Blaming gaming

Burt brought home these metal soap dishes; they were handsome until water hit them, then they rusted.

I blamed Burt for their high maintenace needs and the ugly stains their little red-blistered bottoms left behind.

This morning as I moved a dish to try to clean under it, I realized that I still blame him. It’s his fault that he brought them to my sink counter.

I can’t bring myself to dispose of them; they’re pretty, except for the ring underneath, and Burt picked them out. Do I blame myself? Of course not. Come to think upon it, let’s ask them’s that made ’em and sold ’em, flaws and all what they were thinking.

These soap dishes are neither my fault [of course not] nor Burt’s. Some idiot thought it was a good idea to market a product so faulty as to stain surfaces and melt soap – another design issue as water accumulates under the bar.

Adding insult to injury, this inadequate product was just good looking enough to fool the buyer.

Caveat emptor, eh?

Love and marriage

We’ve talked about love during caregiving, but I have not been forthright about sex. We don’t talk about that in polite society as my mother would assert.

A visiting carer who came by to see Burt was not so circumspect. She suggested I should connect with someone in circumstances like my own. “It’s not cheating,” she assured me; “don’t think of it as cheating.”

To be honest, sex with anyone, even with my beloved whose confusion made sex impossible, would have been a ridiculous distraction. It would have proven a diversion. My focus was needed elsewhere. Caregiving takes a lot of concentrated energy.

Burt, like many suffering from dementia, did have bouts with hypersexuality; these were a muddle.

Eventually, he calmed down until talk of sexual contact was a kind of conversational gambit.

I would say, “if I took you up on those suggestions, you’d run for the hills” and he would smile. We were on the other side of this behavioral issue.

Sex, like so much else we’d lost to dementia, was no longer among the common shorthands of our marriage. It was another loss I mourned.

Between the ED not uncommon in dementia patients, the lack of filters, and the discombobulation of the hows of love making, you might feel a nice cuddle is all the intimacy you’ll have. That and the love in your heart for the spouse you’re losing.

There remained a lot of affection between us. I hugged him often, even over the bedrails, we kissed regularly, and held hands as much as possible. The last few days, I let go of the touching as well, but before that PDA was definitely our style. It had always been our style, just ask the driver who yelled at us get a room many years ago when he went by on 11th Avenue.

There will always be memories.

Take care

It hadn’t occurred to me until my friend T said it. Burt chose me. He knew I would be there for him. I am always uncertain when I say that, although she assured me it was true.

There were all those times his wife was missing. Did she go to Walgreens, she was always at Walgreens?

Not everyone chooses well. Burt did. I had too. He had, until, his illness, before dementia made him the one needing care, taken care of me.

I knew, despite his declaration that if things were the other way around, he wouldn’t be able to care for me as I was caring for him, that he would have done his damnedest.