My friend and neighbor D was one of those who watched over us.
Another neighbor has been urging me to get a dog. She thinks a small dog would be best. She, as people do, really loves her dog. Burt had been fearful around dogs, and I think she took it a little personally when he overreacted to her sweet pooch.
For a while, Burt, uncomfortable in the presence of dogs, would propose we get one. He said he wanted a small fluffy white one like the one his cousin Oscar had.
I had a dog growing up. Mine was a German Shepherd who barked at every other dog and dragged me to the supermarket. When we met, Burt and I, I lived with a cat. Her stupid pet trick was jumping from the floor onto my shoulder. Burt was impressed.
Burt was leery of all animals, but he came to be quite fond of Sophie. This despite the fact that she scratched him once. Sophie was actually named for Sofia Loren due to her ability to be dramatic and sultry.
[Speaking of Sofia Loren, we once, in one of those NY moments, crossed paths with her. It was on Madison Avenue, and we were walking home from a show. She took a carpeted walkway to the doors of Ralph Lauren. We were obliged to stand behind the ropes with other spectators. Celebrity encounters were a Burt favorite.] Back to our story….
In our chosen building, there were many encounters with dogs to be had. Burt did not always handle them with grace. He hated friction even as he courted confrontation, so he would turn on the charm. Extra hellos and other greetings would be his to mete out to offended dog owners.
My friend and our neighbor told me he was a wonderful man, despite Burt’s run-ins with her beloved Golden.
Burt loved people. They usually sensed that and returned the favor. Now as I walk around our balliwick, I reap the benefits of that mutual admiration. Offers of anything we can do and affirmations of Burt meet me in our lobby, up the block, and around the corner. I say to him, as people do to their loved ones after they pass, thank you for these gifts.
It occurs to me that in the five long five short years during which Burt suffered at the hands of Lewy, we lived a lifetime of routines.
We watched Lawrence Welk every week. We had television dates. For a while we went to the park all the time. We had a weekend outing every Saturday and Sunday for a few months before the end.
The physical therapist came and Burt loved his OT. We invited visitors.
While in rehab, he “discovered” the afternoon entertainments. After that, we never missed even if BINGO wasn’t that much fun for him.
I always brought him something from my outings. His first aide noted that to him when I came home. I used to bring treats to the rehab facility too. Not so much lately as the little gifts didn’t register with Burt anymore.
I started playing YouTube music videos over the last months.
He went through several rounds of sleep difficulties. He wasn’t eating. He was eating but it was only cakes and cookies, lemon meringue tarts and Madeleines to be precise.
I think I made an occasion of each phase.
One big event for Burt was a Thanksgiving dinner at LHNH. He praised it for months after. He came with to LHNH Caregiver Appreciation Days a couple of times.
We had a wheelchair escort guy go with us to doctor’s appointments. Walking would be too much for Burt and John was a big help to me and a treat for Burt.
D and I made plans to take a walk today. The weather’s been mild. Maybe we’ll cross the bridge that goes over the FDR to the Riverwalk. Burt and I used to walk there all the time. I mean, before he got sick, too. For a while, when he was still walking, we would go there to sit and watch the river.
From 2017, Burt, on the ramp
I hadn’t taken that route in a very long time.
The ramp was too steep to trust the walker wouldn’t fly off; one Sunday, his weekend aide and I did take him to the bench in his wheelchair. I hadn’t walked there myself in a very long time.
Walking by the river with Burt – that had just been what we did for years. Then, when he got sick, and walking got harder, sitting by the river to enjoy the calm of watching water became a pleasant pastime for us.
I remember seeing him often, leaning on a companions’ arm, in an intense conversation, walking back over the bridge just as I returned from the gym.
That bridge, access to the East River Esplanade, had been one of the selling points on living in this building.
The neighbors who have become friends and who watched over us all these years were the building’s hidden assets.
My friend D warmed me by letting me know she was sharing remembrances of Burt with the doormen. She said she was also talking about him with her sister and their parents.
Burt and I used to see D’s parents at Sedutto’s. They would take D’s girls for ice cream, I’m guessing once a week.
I have a theory or more like a feeling that sharing stories of Burt keeps him present, not just for the sharer but for me. Actually, for all of us who cared about him.
Since Burt was outgoing and a character (I am going to go with an eccentric), Burt stories have the potential to be memorable. That’s the goal! Remembering Burt.
You met Burt here after the Lewy Body Dementia had taken a toll.
For years, as it progressed, he maintained a lot of who he was. And who he was was funny, friendly, inquisitive. Loving, caring, smart. It started to really diminish him this past fall, LBD did.
He lost his sociability. He gave up his mobility. It was about 3 or 4 weeks ago that he stopped engaging with visitors. Not entirely, he was very sweet with the dentist when she came during his last months.
At the end, as you’ve heard me say, he ceased to engage with any of us. He was mostly asleep the last four days.
When I met Burt, nearly 35 years ago, he was… simply, complicated as we all are but less obviously so. He had no notions of who he should be.
It didn’t occur to him to put on airs. He had lied. [I don’t want to be pretentious, and say he dissembled]. It took a bit of math upon meeting his eldest to realize he had subtracted from his age. He was truthful if a bit boastful about how much he loved the theater. He made up for any exaggeration by getting us an overwhelming number of subscriptions to the ballet in our first years together.
I loved the ballet, specifically NYCB, and we went to twelve performances in the first season and again in the second. I think we routinely saw 36 matinees in a year. Burt got the tickets for me, but he really enjoyed it. Going to the ballet was one of the things he said he wanted to do after the pandemic; at that point it was unlikely he could peacefully sit through a performance. The idea of going and of his wanting to go pleased me.
We went to the theater, too, and Burt took a shine to drama. His earlier experience had been going to musicals; the first he’d seen way before we met was The Music Man with Robert Preston. Over the next many years, we were indiscriminant consumers of staged works.
Burt taught me baseball. I found it delightful. He tried educating me about hockey, to no avail. Football on TV, even with the Burt tutorial, was unpleasant. He watched and I groused. We succeeded in getting me to the stadium to witness a Jets game; they lost but had they won, I wouldn’t have converted to fandom.
I liked basketball, however, to which Burt was indifferent. We went to a bunch of Knicks games because he got the tickets to please me. When the Liberty came on the scene, we became season regulars. At every game, we collected the giveaway T-shirts. In bulk.
Burt had anxiety and suffered panic attacks. Despite or because of, we went tooting around, not just all over town, often via the dreaded subway but on weekends, away. He took me to Atlantic City; we actually wound up there some 5 times.
On one trip, I was on a streak, playing an odd table game. Burt favored roulette or black jack but came to check on me. Each time, he swept by, he took the winnings and left me with the opening stake. My table mates looked upon me with pity but Burt was just preserving the win. We came away $300 the richer. Gambling is really only fun when you win. Gamblers chase those wins; Burt believed in walking when you had one.
Burt bought me this souvenir at Saratoga
Our other gambles were on a trip to Saratoga. That’s a lovely town. We got that ticket when we complained to Amtrak about poor service on a Boston run.
Our honeymoon was also a train trip. We spent the 4th of July weekend in 1992 at Washington DC, complete with a protracted fireworks display and a visit to the White House. Roberta Flack sang at the Mall. It was glorious.
Our first weekend away together was to Newport, RI in 1990. We got stuck in a horrendous traffic jam. Burt, as panic over being trapped struck, took control to walk through lanes of stopped cars and returned to the driver’s seat moments before we were on the move. Our next challenge were darkening storm clouds at the bridge. Another trap, and with me singing always off-key a sixties love song.
Burt referred to that weekend in Newport as our honeymoon. Lots of lobster whenever we could find it; Newport’s can’t be beat. Which reminds me of our weekend in Mystic, for no particular segue, and the mess the grandchildren made at Mystic Pizza.
You don’t need details of every travel the Becks took but do know that for Burt, each time away from home was a challenge. Apparently, he was a man who embraced challenges. He chose to challenge himself and fight the panic attacks. We lived these little adventures and were fortunate.
We were happy. We bickered. We cooed. We walked all over New York City as New Yorkers do.
Somehow, we started going to fancy lunches at 5-star restaurants. It became a Friday routine. We added the decidely not Michelin Finnegan’s Wake to our Friday dates. We had dinner at Daniel’s for my birthday and again at Thanksgiving. Any such plans were orchestrated by Burt.
Swag for season ticket holders
He orchestrated attending Jazz at Lincoln Center concerts and performances at the Beacon. I think we saw Willy Nelson 4 times at various venues. Bette Midler and Dolly Parton at Madison Square Garden; Frank Sinatra and Shirley McClaine at Radio City. Cher, Tony Bennett. Etc.
I think we kind of lived large thanks to Burt’s wonder and curiousity. I know we loved large.
When Burt started having hallucinations (again) in the past several months, they (like the first ones at the beginning of Lewy) were mostly benign.
I think it’s safe to say he felt safe in his home. I am grateful for that.
The worst might have been that he needed to take someone from his crew to task. He would speak harshly to the ceiling where they dwelled.
The harsh lectures were mostly procedural; he was directing somebody to do something. On occasion, it sounded like he was asking advice. «You think so,« he asked earnestly.
Sometimes he would turn away from a conversation we were sharing to address an imaginary friend.
Honestly, I was miffed at losing his attention; I wanted him to myself but shared him with whoever they were. His hallucinations kept him company.
I knew then as I do now that they were his companions on this journey as surely as I was; he had every right to engage with them when he wanted their advice. I learned from his excellent aides who took no offense as he spoke with ceiling friends, to let it be.
At first we all would respond when he started talking to them only to realize he was otherwise occupied. It felt like I was intruding on a rich fantasy life.
In the last four days, he stopped communicating with them and us. He was engaged in breathing and sleeping. I may have told you this before, I regretted not having said goodbye when he still could look me earnestly in the eye. My repeating «I love you« to him will have to stand-in for goodbye.
Since his death, I addressed his bed with my thanks and appreciation. The hospital bed was removed yesterday so I talk to the bedroom. It was his last arena of life. I am grateful for how deeply
Burt touched my life; for the color and adventure and love he brought me.
I have to express that gratitude. Sometimes, I will say it aloud to where I imagine he is.
I’m guessing that’s (among other places- like everywhere) in my heart.
Burt just passed and yesterday was odd and aimless although I had things to do and did them.
I miss Burt although saying it out loud is stating the obvious. A redundancy. I miss his aide. I miss the routine of our days. Back to the redundancy: I miss Burt.
I told him I will love him forever. That’s a promise I know I can keep.
He owned my soul as I am now entrusted with his.
To those who remember him as a funny man who was happy to make people laugh, yes, he was. He got joy in laughter.
He was lucky to have laughter. Some mornings, he would say something so funny, he’d crack himself up. And when he laughed at his own jokes, we, his aide and I, would bask in that joy.
Speaking of his aide, he was lucky to have her, too. He loved her and she treated him with tenderness and affection. She was with him in those last moments.
Come to think of it, we were both lucky to have her there.
I am aimless the day after Burt has left his body and his body has been taken away by the men from the mortuary.
I visit the funeral home to fill out paperwork that will carry him away. Even further. Or carry his body away. I turn spiritual of a sudden. I know his soul, his spirit lingers.
Who he was, that spirit lingers, and I go about gathering all the information it has left in memory.
I do not rely on my memories alone. I turn to the boisterous fan club he has left behind. Burt has a large following.
I get calls or texts or emails that fill me in. His friends, and there are many, share a memory. I get a hug from our mailman who tells me a Burt.
Somewhere pretty late in our journey, probably about the time of his last birthday, Burt said “They’re not my friends. They’re yours.” He was willing to share in their friendship but sure that it belonged only to me.
He didn’t realize that it was he who galvinized my sociability. He spoke to everyone and with the same confidence.
He was welcoming.
7C before she moved away was enthralled by what a confident man he was. A friend called to say how sweet his flirtation had been. I treasured the flirt in Burt. Flirtation came naturally and as part of his generous heart. It was a pleasure to watch him shyly and boldly embrace the world, especially when it was female.
He could be ornery and difficult, or maybe it was just assertive. Dementia takes away so much of your agency that sometimes you just have to put your foot down.
My friends, his friends share the stories of his journey. Some of our friends know him from before but we focus on the past 5 years. Burt had a presence. They tell me of his big personality. My heart warms and heals.
My burden's been lifted, or Lessened. I search instead For the purpose I've lost or Misplaced. Caregiving is a Job or a job description, so Once it passes you are no Longer giving care.The work Is over, finished, the burden Lifted, and you by definition No longer occupy that job. By definition caregiver does Not define you, it is not who You are. It doesn't define me. I am no longer your caregiver I am bereft of the work that Love had become. My job, to Care for you, to take care of You left my house, our house When you passed, leaving me With the caring, the love but Without you. I seek a purpose To turn to, knowing there will Be none as deep, or intense As giving care to my beloved, Knowing that my love and my Care survives when caregiving Passes so that memories hold Its place.
this is our life 