this is our life

The Firehouse

Back in the neighborhood with the reminiscent firehouse, I am early^* for Fresh Tracks at New York LiveArts. Once again I am reminded about Burt’s encounter with the fireman all those years ago.

^*I went extra early with the intention of snacking and sitting at Ama Vita on W19. It’s closed on Saturdays?¿

Of course, my memory awakens to the fact that that firehouse was near the Time Warner Center in the Columbus Circle area. I am remembering Burt’s admiration of the young man who showed him around that afternoon.

It’s a good memory, of course, since it is connected to Burt. And it isn’t about the actual location of the firehouse.

Burt this Wednesday morning

It’s no secret that my walls and screens prominently feature photos of my guy. Seeing him with a this is a good day smile on a screen this morning, I had a pang of miss him. And in that moment, the pleasure of seeing him.

More importantly, the pleasure of seeing him happy. This lead to a rumination, and a hope, that he had had a good life. My hope is that I helped make his days good. I know we both did the best we could, and despite it being a Burt catch phrase that doing your best “is not good enough” in fact, it was. That smile tells me he knew it was.

Perfect

The thing about perfection is that it does not stand alone. That is to say, it is relative, as in what is perfect to you or for you is not objectively perfect. In the eye of the beholder.

We are all flawed. We are all perfect.

So, Burt was perfect. I remember some rough spots, some edges, some exasperating habits. And all that just added up to perfection. Burt was perfect for me.

No surprise

She could no longer sneak out
With him to see the world through
His fresh eyes; one blue, one with
A small cloud of the nevus, brown;
Eyes, opened wide with the surprise
Of knowing she loved him, of how
Much she loved him, surprise and
Delight. His delight, recognized so
Suddenly, and so often, delighted 
Her; it was a shared delight in their
Shared love. They could no longer
Sneak out to enjoy their mutual 
Love, but it was theirs, is theirs still
She could always remember that.

Acting my age

In the little over three months since Burt’s passing, I have begun to feel old. Well, to express it more accurately, I have begun feeling my age.

My first, initial, reaction was that the strain of care, worrying about Burt’s physical and emotional state, lifted. That came also with a lift of my shoulders a few days after he died.

The last month or two, every muscle has tightened and my joints all ache. It might be that I am now, in the midst of grief, experiencing the strain of mourning.

My theory is that, actually, this is how old I am. While Burt lived, I needed to stay fresh and mobile for the sake of his care. My years are simply catching up to me now that he’s gone.

Time will tell.

A conversation

These are the times that try our souls.

In light of the advent of big trouble in our nation’s social and political landscape, I found myself asking Burt for advice. I started by saying I was glad he was out of this and safe. If he were here I would stand silent to avoid any risk to him. “You were not a take-to-the-streets kind of guy,” and yes, I said it aloud.

“But, honestly, this is too much.” I asked Burt if I should stay silent, stop walking with those who are resisting. I said [again, yes, aloud] “Isn’t it just plain wrong?”

I think I know he would err on the side of safe-and-quiet. I know that I can not heed that advice. I also know he would be proud to support me in protesting because it is just plain wrong.

Finding out

It had not occurred to me that anyone faced with caregiving alongside a person diagnosed with dementia would not seek… help, to learn all possible. I know you would not be following along here if you were that incurious.

To my utter surprise, I met a disinterested spouse recently. I gather she had gone to an intro meeting, but apparently stopped at Previgen didn’t help?

Of course, it doesn’t. I don’t mean to be judgmental but this lack of basics hit me.

It’s bad enough and hard enough to approach the role of caregiver armed with the knowns and the not-knowns.

If I am serious about being non-judgmental, I will let this go, and be grateful for her that she made it to the end of her journey.

Let me advise you, if you are starting life with your loved one with a dementia diagnosis, to find out all you can. Seek assistance. Be informed.

Supporting

Healing after losing the one you love is not really about moving on. It’s about honoring and it’s about remembering.

It’s also about finding joy. A word I am flinging around these days as if it were a flag to the future.

It is important. Significantly, it also helps to continue to support others going through this journey with Lewy (and other dementias.)

I know that as time passes and I am no longer involved in that day to day of care, my advice will be dulled. My support will not.

I have acquired a new and different perspective. It’s the perspective of full-on mourning.

I still maintain that there is nothing ambiguous about your grief as you watch your loved one lose his faculties. But, the loss of Burt, entirely, is a different kind and degree.

So I can mourn and celebrate who he was, what he meant to me, both in the before and the after of Lewy. I can mourn and celebrate what he means to me, now, after he’s gone.

I can honor him by supporting others who are still on this sad, difficult journey.

Some days

My grief regimen has been to keep really busy. There are some days that the activities don’t take me out in the whirlwind.

I was feeling guilty those days, and then I thought, Why?

It’s ok to stay home listening to an audio book or podcasts, writing or drawing. It’s ok to just be. At home. With memories or new ideas.

I welcome activity, always have. I enjoy warm days and sitting in the sunshine. I value a walk. It’s fun meeting friends and talking.

I also like my peace, my time to slow down. Some days are going to be like that.

Don’t give up

As I was looking for a reference in some posts past, I found this amazing quote from Burt:

“Don’t give up on loving me,” my very sleepy sweetheart said, holding my hand.

As he drifted off to sleep, Burt called me over [why does everything have to be shared as a secret (sigh)?].

Despite my exasperation over the urge to whisper, I now wish I could hear him whispering one of his secrets to me.

I have fond memories of some of his whispers. While he was in the rehab in 2023, he would phone me to discuss an escape route.

Those were always whispered calls, usually made from a cellphone borrowed from one of the CNAs. His plans included his sneaking out to meet me by the busstop. Those calls always charmed me.

Today, I want to reassure Burt that no, I will never give up on loving him.