this is our life

Your story

Memory fades. Not just yours, my dear which was strangely altered and crippled by the dementia with which you suffered.

Everyone’s.

It, like the hearing of which couples complain, can be selective. Or just inaccurate.

It was a gift to me when you recounted so much of your life story to me. Some of it stayed so prevalent with you even as you lost other touchstones that I heard Burt’s life and times over and over again.

You used it to woo me, this woman you did not remember being your wife; these flirtations were eerie and oddly touching.

Later in the course of your illness, details became conflated or just fanciful.

I am so grateful, Burt, that you were such a vivid story teller. I am grateful that I carry and share those memories, your memories. They mingle with mine and there remains so much to remember.

The d-word

It is more than mildly distressing to me to throw the p.w.d. label on djt.

It also gives me pause when I hear my news sources or Rep. Madeleine Dean, say that trump is “losing it.”

I feel it dishonors Burt.

I also acknowledge that my stance on this is weird.

October 2013

Burt was so angry over the 2013 government shutdown that he refused to ever vote again.

I disagreed with his conclusion, but understood the reasoning. He felt it was a huge disruption.

The ACA prompted the Rs to stop work for those 16 days. We seem to have a similar excuse– health care– this time around. I know it was bigger then and it’s certainly bigger now.

I shared Burt’s disappointment in such blatant dysfunction. I never let that disenfranchise me. Burt last vote was for Obama. Just as well, he would have taken the first term trump win personally and would have felt slighted had he gone to the polls in 2016.

Later, in 2020, after dx, before the Biden inauguration, he got to yell his answer to the dementia question “fucking Trump.” It amused the ER, but I question the use of Who’s the President as a way to determine cognition. Did he know the answer was Biden in later visits? I can’t recall.

Another trove of pix

Burt wore lots of hats. The “84” shirt was a favorite from his great surprise party, gifted by our friend S

At the top, it’s Coney Island, from the before, and hat in hand. We got the San Diego sweatshirt from our SD daughter bc Burt loved his Boston souvenir sweatshirt. You’ve seen these photos.

Over troubling waters

via Photo Challenge: Bridge My local bridge always smelled of white bread baking when I was growing up and we came over it from Queens. In those days, it was just the 59th Street Bridge, now it’s named in honor of one of the city’s recent mayors, Ed Koch. The bakery on the Queens side […]
Over troubled waters

If you click on the link (as in a connection) you will see pictures of Burt and me from before.

There is a circuitous link to a book I wish I had read before for me.

Travelers to Unimaginable Lands was suggested by fellow carers while I was caring for Burt.

In it Dasha Kiper gives advice and sensible guidance that is very soothing.

She strikes at the commonality of experience during these journies of ours. If you are still caring for a p.w.d. this is a must-read. Well, there are no shoulds or musts, but you will find it of comfort. And, it’s not a long-read.

Travelers to Unimaginable Lands by Dasha Kiper is my book this week.

Yes, dear, I do

Do I miss you, darling?
You, of all people, know.
You know I miss you, 
And, even, I'll bet, how
Deeply I miss you. It is
Intense, this absence of
Yours. Yes, I miss you,
Dear. Yet, also, I live my
Life, a life different from
The one we shared, the
One I miss when I say 
I miss you, darling, so 
Much. I miss you, and I
Miss you and me, the 
We we were. Yet, I also
Live my life, one that's 
Different from the one
You and I, we shared.

I ran into…

Last week I ran into a friend who now owns a bar-restaurant that Burt and I frequented; we hug, she offering me condolences and saying now you’ll live your best
life. Then she’s telling me that Burt was a character. Hearing her assessment is a blessing.

That day, I also ran into a Social Worker I had consulted during the journey. She’s from a nearby community center where Burt had joined me for Caregiver Appreciation Days. After our meeting, and BTW, we exchanged hugs. I sent a photo of her with Burt from one of those events.

Seeing people who knew him feels so good. Burt still has this connection here, not just with me, but with our broader world.

Listening

I routinely go through my picture trove on the phone. The photos and videos of Burt are starred. This is what stopped me as I went through the cache today.

Burt’s voice in these snippets is so sweet to hear.

I am so grateful!

This one above was the first one I uncovered. It still makes my heart do flips when I listen in on our conversation.

Madeleines

This was the source of Burt’s favorite treat:

The past

Finnegan’s Wake is on my path to the senior center.

I must have walked by dozens of times, but it’s only today that I ran into the woman who owns the place. We exchanged hellos and haven’t seen you in a long time.

I explained about Burt’s dementia and told her he’d died. It’s recent, she sympathized, and invited me to come by.

She said Burt was funny, he was a character. I agreed.

I had avoided going to Finnegan’s during his illness. It had been one of our regular lunch haunts. I did not return since he passed.

It’s likely I will now.

A second brush with the past also occurred today. Sometimes, it feels as if we conjure people, and in this case, my friend and I had mentioned N just last night. And now, here she was waiting at the elevator. We hugged as I had with my buddy from Finnegan’s.

The past made my eyes tear, and it felt like I had experienced such nurturing encounters.

An abundance of the past.