You didn’t ask….

Unsolicited advice. I know! you never want to hear it. If you think about it, you probably don’t want to give it either.

This entire blog is an exercise in giving advice. The advice I give is from my experience during a heart-wrenching journey with Lewy Body. No one asked, but I am here telling.

My motives are pure, I swear, and I sincerely hope that this is helpful.

Burt died last February. I miss him and I am relieved.

His loss was unexpected in the way that anything we know is going to be surprises us. I had many signs in the last several days. We were preparing for hospice.

As time distances me from the trials of daily care, I am left with memories. These are not of those trials so much as of good times with Burt.

As time distances from the day to day of this journey, I become a less reliable source of what to do.

I will offer this advice, always look for the positive in every moment with your loved one.

As time distances you from the difficulties and challenges of your journey together, you will remember the good.

Nostalgia

Nostalgia by definition is the sentiment that has us living in the past. Reliving what was, wistful and perhaps teary. In my case, the emotion is always resolute.

I experience my reminisces with gratitude, glad to be reminded.

The Banc has been here on the corner of 30th and 3rd for many years. Burt and I stopped in one afternoon when we chanced to be near. We quite liked it, as I recall.

Thought we’d return but it isn’t in our neighborhood and we were seldom down there at the convenient time.

Documented

The photos I display on every surface document Burt’s days with Lewy Body.

Everywhere, there are pictures of him as the disease progressed and some of us at ballgames or on walks by the river. It’s a 10 to 1ratio.

What strikes me in the pictures I snapped during our journey is the joy I found in him. Well, my joy in being with him but more importantly the joy he still had. The joy he so freely shared with me. The joy he’s left for me to see.

He’s smiling or he’s engaged or it’s just another moment that it pleases us both to have shared.

It was good, it was intense, and it was awful. I am grateful to have taken this journey, all of it, with you.

As memory serves…

As time slips by, it becomes easier to remember the time before dementia came into our lives.

After all, there were so many years in those before-times and so many wonderful memories from all those years.

During Burt’s illness, there were good times and difficult times.

In other words, the last few years left me a mixed bag of remembrances. I remember those times with equivocal gratitude. The intimacy of caring for Burt overshined the challenges but the challenges loomed large.

Remembering the places we’d been over the years, and the things we did together over all those years is unequivocally a delight.

FOMO

While listening to the New Yorker‘s in depth story on Willie Nelson, I was moved.

Nelson is clearly impressive, not just as a cultural treasure, and as a performer, but also as a human being.

There’s a lot I had not known about Willie Nelson. I was not a fan, in the sense of one of those following his career, collecting his albums.

I had, thanks to Burt’s curiosity and enthusiasm for seeing all, and attending everything, been to three or four of Willie’s New York concerts.

That’s what dawned on me some three or four paragraphs into the story.

It’s a nice reminder of the life we lived. As if, all my roads lead to Burt.

Through the years

Who was I as all my years
Accumulated? The time is
Not a continuum. It breaks
Into small scenes, acts as
Distinct as if each were a
Life encompassed in 15 Minute skits, not all funny.
Many poignantly true to
Life. So much time passed,
Passes unnoticed, goes Into a compartment, a
Memory perhaps not always
Remembered as it should
Be. I do know my last […]
Through the years

Coffee?

This storefront reminded me that my “coffee quest” goes way back. As soon as I saw it, I was reminded that it had been a very cool coffee bar that Burt and I stopped at years back.

Now that I think about it, Burt indulged me whenever I had wanted to try a new coffee shop.

Those were the days before he developed his taste for lattes. He had been a tea-totaler when we met.

An afternoon coffee break

How we grieve

Is mourning dependent on what we believe?

Do our beliefs influence how we grieve?

Burt with that light from within.

Is there something inexplicable about death, dying, and about mourning?

My atheism runs up against my genuine sense that Burt’s always with me. I mean literally, I feel his presence. Spirits and souls are antithetical to the beliefs of an atheist. Yet, there it is.

It is Burt’s soul that’s with me always. I feel his spirit around me all the time.

There’s something transcendent  in my experience since Burt’s passing.

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