Now that you’re gone

This haunts me.

Our first encounter with Capgras was both strange and amusing. Burt welcomed the imposter, an atypical response I suppose. In that early iteration, he wound up meeting 13 Tamaras. I remember one of our conversations during which I interjected our shared past at which Burt said “You’re a very nice person. I like you a lot but I don’t remember you.”

It was a gut punch. I know that over the years to come, he often called for me. He very often recognized me. It’s the sometimes that he didn’t that hurt.

We had at least a couple of  Capgras-free years. There were no multi-mes to confuse an already altered relationship. I found out that a deep love based in devotion and care that no longer included intimacy could sustain us. I missed sharing life moments and decisions large or small with my compromised spouse. We still shared kisses, hugs and I love you.

He called my name when he was in need.

In the last couple of years, a form of Capgras returned along with hallucinations. I was not always his protector Tamara.

For months, in this phase, Burt would proclaim “I hate my wife.” This was a sentiment he shared with me as well. Don’t know who he was telling when he told me that. His ex-wife’s name was also bandied about as possibly a wife.

Now, mind you, in all this, there were moments when I said I love you that Burt’s eyes would widen. The recognition both of being loved and of who it was loving him was there. I cherish that.

What haunts me is the times that, despite there being at least 6 of us, all saying I love you very much, he couldn’t find us. “She’s not here.” “Where is she?” I think he felt alone. I never abandoned him but he was abandoned. He had hallucinations for company, but he lost me. I so wanted to be there for him, always. I regret that he felt alone. His loneliness haunts me.

I know there are some things in life’s journey that we undertake alone. I think sickness and death are lonely life events. We may be fortunate in having a partner, but in the end we venture alone.

I wish it were not so, but I know he may have been alone but he was loved. He is loved. Burt, I love you very much. That love keeps me from feeling lonely and alone in your absence.

The Falcons

My friend J came to join me at a theater performance wearing a Falcons varsity jacket.

Quilts seen at the Theater For The New City

Why is that significant?

Unbeknownst to her, Burt and his highschool pals called themselves the Falcons. And, yes, they had varsity jackets. It’s possible that this one, found at a bin in a second hand store, could have belonged to this band of boys.

J and I had pierogi  at Ukrainian East Village Restaurant (called varishkiyy here). The eatery had resonance for me because Burt and I frequently ate there. The area resonated with both of us from past visits and past loves.

It’s been years since either of us were in this favored areas.

The sun will

The last five years have been harder on me than I felt as they rolled along.

Caregiving is an encompassing experience. It holds your focus; your loved one keeps you focused on doing for…. Burt was the center for my worry and care.

I was a model for selfcare, I say with no boast or irony. I knew I had to have time away from care and for me. I got Burt companion care almost from the beginning.

He needed to have someone at home with him; not all pwd will, but it felt right. I could go out for 45mins to an hour to the grocery store but for gym runs or lunch with a friend, I didn’t want to leave him alone.

Now that it’s just two and a half weeks since Burt passed, there is relief. Relief mingles with sorrow but I see friends and still have joys in my life. I also have my reflections and memories.

There is a relief, also, for him; Burt’s last decline was a decline in his quality of life, a life that had already been impacted by Lewy Body Dementia. So, yes, from bad to worse. Much worse. I choose to think his passing was at his right time. At his chosen time.

Now, as that time ticks on, I have to adjust to his not being here. I have to adjust to being alone. I will be fine.

Time spent together

Was Burt perfect? Well, of course. Oh, you’re serious. No, of course not.

The moments I conjure now are perfect. The ones over the last years may also be tinged with sadness. Of course.

The ones from before his sad long illness are glimpses into a happy life. Often they are little things that are symbolic, symptomatic of a happiness we lived.

Sitting behind home plate or in the outfield or high in the new Yankee stadium, those were good times as were days in Central Park by the ballfields there. “Your dad was right,” I’d say, when we sat over by the 3rd base line, “third base is best.”

Sitting in a theater, waiting for the curtain to rise was as good a time as walking to the theater. Taking the light rail around Hoboken was as much fun as getting to Hoboken by ferry had been.

A walk in the park or one across town to no place in particular, those were good. They were all adventures, quiet little adventures.

It was all time spent together. And yes, all that had been, was perfect.

Along the way

I have met and observed others treading the hallowed ground of this dementia, the Lewy Body disease. This poem is a tribute to one such fellow traveler.

She of the perpetual sorrow

She carries her dread but is
Not sure what it is she fears
Her fear is real but she fears
It may be just the dread of a
Distant indistinct nightmare
She dreads encountering now
When awake; her fear is real
Yet she imagines it may not
Be timely or timed right but 
Is only a dread she imagines
And carries into the daylight
Where nightmares dissolve
For others, but not for her.

In my corner

He always cheered for me.

Burt was always my champion, even in areas he personally had no interest.

Zumba classes. My poetry. Things he would never do, although he dutifully and lovingly listened to my poems. He encouraged me. He enlightened me. His insights, some made during the years of his slow decline, were often intelligent and thoughtful.

Burt made the unlikely request that I sing along when music played. It seems he enjoyed my enthusiasm more than he regretted the missed notes.

Burt also had an unerring compassion. Up until the last few months, he always asked after those around him. We would talk about his concerns and issues, he’d stop, holding my arm, “How are you feeling?”

He did much the same with anyone around him. He was genuinely intetested.

He could be so joyful. His goal as the illness progressed was to make people laugh. He often hit that mark. With ease and a wide grin.

Now that his passing has quieted his mirth, I like to think he will always be in my corner; that he will always be a champion of my best interests. Love doesn’t die, my dear, it cheerfully continues to fill the heart.

The process

Grieving is a process that involves and invokes memories.

Thanks to the volubility of my deeply missed beloved, I have lots of memories, even from his childhood.

Burt told me many stories. I learned of the running board on  his grandfather’s truck; the grandfather with whom he planted cucumbers. I heard how he met his childhood best friend while they tried to build a toy airplane in school. His mother sent a note back to their teacher who had said they were fighting in class. No. Burton and Paul are best friends, his mother said.

I heard of his teenage loves and crushes; of later indiscretions; all told with maximum humor and with ease. I got glimpses of his family life; through Burt’s tales, I was introduced to his co-workers, many of whom I eventually met in person. He laid out his past in the reminisces he shared; even after Lewy was with us, Burt recalled Brooklyn, summers in the Catskills, married life in Spring Valley, commutes to Wall Street.

His stories brought me into the scope of each of his decades, included me in his life.

We did things. [Yes, sensual things too like the embrace that caused a driver in a passing car to shout Get a room.] More ordinary things for middle-aged people that included walks to the pier by the apartment on 11th Avenue at 43rd Street. We were pleasantly surprised by a tug boat fair. Apparently an annual event, tug boats, those mysterious and colorful guardians that ferried larger boats, barges and ships into river waters, parade in the waters and around the docks in a festive display. It was fun. We had fun.

We always had fun. And we were middle-aged by the time we met and married. Evidently, we were also playful spectators.

Hockey games, something I never took a shine to, were fun because Burt knew the game and loved teaching me. I came to realize that if there had been no high sticking, the audience would have been so disappointed. We agreed that keeping an eye on the puck was a challenge. We stuck to baseball, a game he had taught me to love, and transitioned our fandom from men’s to women’s basketball.

New York sports is often accompanied by the cry for next year and Burt was a Mets fan. We dragged my father to a triple A game in Pittafield once. Another time, we were chastised for being late for dinner after a visit to the Pittsfield Mets. While in the Berkshires, Burt tried teaching me to drive a stick shift, our rental car that weekend. Another game I never learned.

We liked arenas of various sorts. The Boston Symphony plays outdoors in its summer in the Berkshires; very Greek I think.

Lincoln Center is a grand space to be in and we loved going to each of the great theaters around the plaza. The spectacle of the lights rising at the Metropolitan Opera House always got us.

We always had fun.

Missing

From beginning  to end, it was not a sudden event. It felt like a long journey and also as if it all transpired in a flash.

Dementia slowly steals faculties, alters personality, changes the conversation.

Once upon years before, we shared ideas and interests, exchanged thoughts and had meaningful communication. Once upon… I thrilled at his touch, felt protected in his arms. All that went missing as his capabilities diminished.

Burt took a deep dive into some symptoms early on, and that actually was sudden.

Medications got him back on track, pretty much, for a while. He was less confused, regained memory and returned to an amicable sociability. There was enjoyment and laughter, closeness and care between us. He seemed happy.

Dementia with Lewy Bodies is unpredictible. It twists and turns so when Burt took that last dip, I expected we’d return to higher ground. I also expected that we might not. Burt took to his bed. Was he afraid? Unsteady?

He was content to stay in the safety of the bed. Less and less engaged. The beginning of his end was some four months in the making. Over the weekend before the final end, he appeared to be actively dying.

I had learned that there was such a thing to my surprise. When it happened, I recognized it.

The last four days, he searched for an exit, hands stretched out; he was mostly non-verbal and staring straight ahead. The end was a truly profound experience.

Now, I am left to miss him but with the certainty that this end was to the good. He passed well and quickly and entirely on his own terms. From beginning to end, the journey was long and arduous as well as short and intense.

Design a site like this with WordPress.com
Get started