Any caregiver with a loved one captured by dementia knows grief from diagnosis on. In my case, I was grieving for the past 5+ years.
One morning shortly after Burt’s passing, I awoke to a my I have been under strain moment. Some awakening. It comes with a duh.
Healing requires getting the brain and body back to functioning. Lots of this is fundamental, part of how we are hardwired. It’s also likely slow. More duhs.
This video explains it simply and directly. And will require more viewings.
As I enjoyed the fantastic Max Pollak Group tap, I had the memory of Burt tapping along as we watched a dancer on tv. He was seated in his big brown chair. His feet were dancing along.
Burt loved tap dancing.
He would have loved this show. In some ways, he was there enjoying with me.
QuickQuickSlow: it’s not a dance, my darling. Wish it were.
Burt passed Feb 25, 2025
Looking back, the blur of our journey as we trudged, loped and galloped along is confusing.
Is it surprising that an illness characterized by confusion would cause confusion? Create it for the travelers as they travailed its inconsistencies? The one who is well as much as the afflicted?
Burt’s confusion was a natural by-product of the Lewy Body Dementia from which he suffered. Mine was the fog of care and the overwhelm of events and information.
We all know how this ends, I opined in a support group. It does not end well. Heck, friends, its start isn’t propitious either. There is enough grief to stretch and stay the course.
My mission today was to parse if the end was quick or slow. It was both expected and a complete surprise. So, I guess it’s not a fudge to claim it was both slow and quick.
As it turns out, my retrospective on this excursion takes me back to a mere four months prior to Burt’s passing. In late October, he wasn’t participating as he had and hallucinating more.
For his surprise birthday party, he was more out of it than in. He didn’t take pleasure in seeing people as he used to. Our outing on November 10th was the last one we would manage.
He got up to sit in his big brown chair for his friend M’s visit a few days later. It was an effort and he asked to return to his bed. We talked by his side but it was pretty clear that Burt wasn’t sure who we were. After that, he.was mostly bedbound.
He tried to get up for a trip to get pistachio ice cream, but could not. Even I, reluctant to catch the decline, saw it and offered to bring him some.
I had every hope that, this being Lewy, Burt would ride the roller coaster up and go back to better days.
In mid December, I went to sign a Molst for end of life decisions. His doctor and I agreed to proceed as if he were on palliative care.
Burt seemed comfortable. Bed care has some issues of its own, like pressure sores, that we addressed. I held onto my hope that Burt would get out of bed to go for a walk; it was slimmer but still active.
These were the days when Burt held more conversations with his imaginaries. He would often interrupt me, ever so politely, to see what they had to say.
Then came what I have dubbed the last four days. On Friday, he stopped grabbing and holding our hands. His grip was so strong! before that. His hands were reaching and he wasn’t speaking. Just gesturing in the way of a supplicant. I knew.
Someone had introduced me to the term actively dying. I knew that that was what this was. Burt was actively dying.
The fact that it took him four days to find his exit is both a long and a short time. I am relieved that he found his way. I am sad to have lost him. I no longer travel his journey with him. Burt is no longer by my side as I continue mine.
My friend greeted me by the lobby door and said go to the park, everything’s in bloom.
Good plan for this aimless Easter Sunday.
My route was to come in at 67th. And there were the memories.
24 or 26 years ago, Burt and I took the girls [as we called his eldest’s children] to this playground. There were rocks to climb and slide down; the youngest of these grandchildren refused. I’ll fall and break my head, she said. Burt was smitten with her.
Burt and I frequented The Park. My path today was full of old stories.
Burt worked with a young cousin of his bosses at Q&R; he liked this nepo hire and she had a hobby that intrigued us both. Who knew that one kept boats at the boathouse if she liked racing them?
My Sunday in the park had the ostensible intention of enjoying the freshly blooming scenery. So:
It’s very green and delicately pink or white or white-flecked-with-blue and daffodil yellow. If I were using a Japanese 35mm film from back in the day, these colors would pop. Tulips are wonderful, and here’s one of those famous Central Park bridges.
At 79th and 5th stands a building Burt and I visited once. Years ago, we were curious.
The Ukrainian National Institute: it’s a beautiful old building.
Two weeks before my planned celebration to honor Burt, I find little reminders in his honor.
I am organizing my living space, with no wish to eliminate any of the reminders.
You might argue that disposing of Burt’s jackets and sneakers can be seen as a way of eliminating reminders.
Throwing out his things is as difficult as I had expected it to be.
I don’t want to forget Burt or dispose of mementos. That should go without saying but I say it out of a little guilt as I remove clothes, and shoes from the closet.
Today, a truck is on way to take donations away.
My walls are happily covered with the photos of him that I took. These are staying where they are, sometimes with an improvement. I routinely make adjustments to keep them neatly in place.
Burt used to love when I would take his picture; he knew it was a tribute of my love.
I often say good morning to one or the other of the images of Burt that line my walls.
My stepdaughter sent me frames for Mother’s Day; (yes, she is always an early gifter). I took two photos of us from-before to put front and center. They represent a happy memory; all my photos do. At times, I repeat their stories as I look them over; I recall the what and where, when and why behind the pictures.
In the course of organizing, I had found papers from the days of our journey, destined for the shredder. These, too, provided memories.
It would be impossible to survive this journey without love, or kindness, or compassion.
I have held firm in this belief from the beginning. I now know how much love, kindness and compassion can buoy me in grief as well.
The fourth pillar of caregiving is respite.
Proper time for the carer to fuel and refuel is a positive necessity. I insisted on it for myself. Always.
I urge anyone embarking on the journey of care to honor the time for rest and restoration. If not for yourself [as you deserve], then so you will be refreshed in order to give better care to the one you love.
Getting ready for a shredding event, as I cleaned out papers, I found Burt’s discharge from rehab. The date was, apparently 2/25/2023, just two years to the day before his death this year.
A coincidence that I found such a jolting reminder.
I had completely forgotten the exact date when he’d come home. It felt so long ago. So much happened to us in that short time.
It’s one of the incongruities of our journey that I measure the passage of time as both long ago and so very recent. There were so many turns, twists and changes.
Burt loved tickets. I think I have shared the joke before: he said he liked getting tickets better than going to the show.
Be that as it may, we went to most of the shows for which we had tickets. Tickets were a big deal and I think it had to do with his childhood.
As a lad, he spent many a Sunday at Ebbett’s Field although he was a Giant’s fan. The Dodgers played near home. His dad would drive his cab to the apartment for a breakfast break on his Saturday shift bearing rolls and, yes, tickets for the next day’s game.
When we were courting, Burt went to Lincoln Center on the first sale day of the ballet season and returned with tickets for every matinee.
He knew how much I loved the New York City Ballet. In our last five years, he’d say he would like to go to the ballet. I always wanted to grant him the wish but feared he’d be restless. I think that was a fair assessment of the way things were. We would watch a ballet on TV’s Great Performances. Sometimes, he’d say “that’s pretty.” Sometimes, he’d have no patience.
Acquiring tickets was an art for Burt. He took a great deal of care at the booth. Ticket sellers all over the city got to know his requirements and he knew who was naughty and who was nice.
For his 60th birthday, Burt gifted himself with a comprehensive sports package. It included a bunch of Knicks games, some Rangers tickets, a women’s tennis tourney at the Garden. He also got Saturday series tickets for his Mets.
The Giants and even the Dodgers had left for California. On the grounds that the Yankees always win, Burt refused to cheer for them. He was a Mets fan when we met.
His birthday was in November 1999. The baseball season we would witness was the year his hapless team would make it to the World Series.
A miraculous event- although not as much so as the 1969 team my mother watched as if she really understood baseball. [I doubt she did but she was glued to the tele every time I visited.]
We, Burt and I, were headed to the 2000 World – Subway- Series. The Mets were going up against my Yankees. If you really want to know, I was rooting for Burt’s Mets. They were the underdog.
Theater, like sports, was not always a win but it was always a happy experience. Wrangling tickets at the box office, never on the internet, was a Burt sport.
He expanded on our interests to take in opera, and jazz, the great American Songbook, and an occasional concert series. Pop singers would pop up on his radar and we’d be at the Beacon watching Rosanne Cash or at Radio City with Dolly. We did see the beautiful Barbra, during one of her last NY performances. We found out she was coming to town from a street fair vendor; next thing, we were dashing to the Madison Square Garden ticket booth. Who knew we’d be seated behind Smokey Robinson.
Tickets and celebrity encounters were a Burt thing. Smokey was one of the few Burt did not chat up. Derek Jeter showed up at one of those women’s tennis matches I mentioned, and Burt tackled guards to speak to him. He told me he’d said he’d been to 1000s of Yankee games. Jeter raised a brow, “Thousands?” Most every big name Burt spoke to enjoyed his enthusiastic charm. The list is long, but we must have run into Jerry Stiller at least a half-dozen times; even I had a long, lovely conversation with him.
Tickets bought can lead to tickets returned, or sold. Note that they always have greater value at the ticket office. Scalpers will not give you a good deal. We got to the theater really early and it was going to be a long wait til Diana Ross was scheduled to appear. The fellow who eventually agreed to help us out said he’d buy the tickets ’cause his mom was a fan. We went out to dinner on our losses.
Burt had a philosophy that went along with this, too. Once you’ve spent the money, that money’s gone. A lot of the fun was in the time spent buying and wheeling and dealing for those best seats, even when they were in the 4th ring.
this is our life 