A neighbor and I exchanged the back and forth of a condolence greeting. I said, yes I’m heading to the theater with a friend and thinking how much I miss the Burt who would be taking me to the theater. The Burt from way back. He said I remember the Burt from way back. Quick as a whip.
Every conversation about Burt is such a good conversation.
In February, after nearly five years suffering with dementia, at the age of 85, Burt passed away.
Before Burt’s illness we had a pretext of youth. Carefree and adventurous, doing and going was our style.
During the years of Burt’s illness we had changed our focus. I am looking to pick up a new thread.
I have no illusion about being young anymore. My life without Burt moves with a different pace.
Little by little, I am starting to make doing and going my style. It’s a tribute to me, my interests, and it’s a tribute to my life with Burt.
Burt had always seemed to be a “scaredy cat.” As his dementia progressed, he was fearful of the many dogs in our building. He would shoo them and then regret his rudeness and make his peace with their owners. He worried loudly when he participated in his PT or when we moved him in his bed.
Burt was prone to panic attacks all his life he’d told me when we met. At one early moment in our relationship, I was panicked by his panic attacks; I split up with him. It was my good fortune that we found our way back to each other.
When I first knew him, he had overcome his terror of subway travel.
We had to be in the first car so he could gauge the signals; if it looked ominous, we stepped onto the platform and addressed his concern to the driver.
On one occasion, forced into the third car because we were with friends, his discomfort was visible and palpable.
Over the ensuing years, we took many a train ride, by subway, by Amtrak and MetroNorth. Burt seemed to revel in the challenge of facing his fears.
My love was always conquering his fears. We lived in a whirlwind in which he was confronting and embracing his terrors headlong. We also lived with lots of joy and enjoyment.
In the end, I came to realize, it was his bravery that I had always admired.
Today, I took a walk across the park for the first time in many years. It was inevitable that this trip would trigger memories of Burt and me.
My path took me along the track by the reservoir, a route we had last walked together 8 years ago. I was pleased to be there with the memory of the nice walks Burt and I had enjoyed. It was a very beautiful day.
My burden, as it were, is lifted. Burt has passed and I am relieved of caregiving. I have the blessings of memory. Good memories, mostly, from a good long-short marriage, from a friendship that enriched my life; good memories from years of doing-together; and, yes, good memories from nearly five years of caregiving, of tending to what needed to be done.
My burden now is proceeding alone without Burt; with just the memories of who he was for all those years of our life together; of who we were, individually and conjointly.
My burden and my blessing is the new path I have to forge in which his presence is an absence.
When Burt was suffering what proved to be his last decline, I cautioned myself to avoid feeling pity. I knew it would diminish him. It was disrespectful. He was a full-throttle person. He had lived big even in these small circumstances. If I loved him I would honor who he was and not pity him.
I could absolutely feel sad, be sorry for the state-of-play his dementia brought. That was not pity. It was the acknowledgment of where we were. This is what’s happened, we’ve come to a sorrowful point and I am sad that we share this reality. I accept it. I do not feel pity. My sadness doesn’t make you smaller.
Dementia is a fast-moving ugly storm. It destroys our equanimity and forces us to adjust. It makes us strong and courageous. Burt showed nothing but courage. That’s to be praised not pitied. That’s how we accept the inevitable change.
The dawn is still beautiful. Is it allowed to be beautiful?
Are there really stages of grief? I know there are because I have lived them once already. I am grieving all over for the same man I mourned before.
My sorrow is not less now even though it is tinged with relief. I have no care decisions to make now. He made that final decision when he died. Life drew out of his body and left him in peace.
He suffered no more confusion. Breath was his final loss. His life goes on in my heart. He is under my stewardship, much as he had been these past five years.
Am I in denial because I yell out I love you Burt? Today I asked his picture permission. You don’t think I’m crazy, do you, when I tell you I love you. You always loved when I said it.
Am I bargaining when I alter the memories and rummage for a different path. Burt stays to see Hamilton with me; he revels in the experience; we walk home together. It would not be the last time (or nearly) that we go to a show together.
Is it crazy, ok, is it strange that I can smile at memories from the darkly intense days when he was falling into dementia? Is it odd that I found his symptoms an endearment? Am I deluding myself when I recall how deeply I cherished him in sickness? Love came to have a new meaning. Its texture had changed and I clung to it for comfort. It represented who we had been as much as who we had become.
Saying I love you Burt gave us comfort. I sheltered in that love. It will see me through these next stages.
I love you Burt, I say to the smile in the photo. I love you Burt, I yell out as I arise. The dawn out our window is beautiful.
My life without Burt feels like it’s been severed in half. So I am living a half-life like a mineral. At least some of the time.
His picture is all over the walls of our living room. I can admire his impish smile or his eager interest. I can remember when we went to this place or that; our apartment is crammed with memories.
In one corner, I placed wedding photos; we are not so young in these shots but we are tense.
I guess we didn’t know what we were in for yet. It was going to be an adjustment. We’d only been together two years when we wed and we tended to be a little headstrong and volatile.
One of my favorite has a Blues Brothers quality. We dressed for a friend’s birthday party with a touch of the masquerade. We didn’t dress up often, once for a holiday soiree and always in team shirts and caps for sports outings.
Losing you. A sad sad song
Of loss. But not of love lost.
You're gone but our love, it's
With me still. It will be with
Me always. Our love, yours
For me, fills my memories,
My love for you, it's forever.
When I awake saying as I do,
I love you Burt. I know I am
Lucky, so very lucky. Love is
A gift, our love will always
Be your gift to me. Losing
You is my sad sad song.
Beware the Ides of March? Is that the 13th, no 15th, and it’s past. You have passed.
I have been beware and aware since you first presented with odd differences.
The days we went all over town visiting doctors with an answer to why you were seeing double.
We shrugged when you returned home saying that you didn’t know which way to go coming out of Central Park.
You surprised me by dropping me off at the line for Hamilton; [we had tickets], you sold yours, and said see you at home, kissed me and turned, walking off.
Years passed and the time came when it was clear you were in a spin down into a disease we did not expect.
You were puzzled. I learned what I could to support you in this new circumstance. I learned what I needed to support me.
It was a strange time. I fell in love with you even more deeply than I had loved you before.
That seemed strange, impossible, but it was true; it was beautiful.
this is our life