My Husband Lived With Lewy Body Dementia. Before He Died, He Left Me This Poem
After her husband’s LBD diagnosis, one sentence became her anchor. Months after his death, she found a poem he wrote — describing life trapped inside the disease.
When my beloved husband Nicky Zann – rock ‘n’ roll teenage idol, celebrated artist, and all around wonderful human being – was diagnosed in 2019 with Lewy body dementia (LBD), our world might have exploded had it not been for one sentence that Nicky shared in the hospital waiting room: “We have had a great run, we cannot be sad.”
Those words turned out to be my anchor as we navigated the disease together.
Unlike Alzheimer’s disease, LBD has a major twist: fluctuations. The person with LBD goes in and out of lucidity; one moment Nicky was 100% himself, and the next he would not know who I was.
A few months before he died, Nicky, in a lucid moment, wrote this poem, burying it in one of his sketch books for me to find three months after he passed. In it, he eloquently describes how he felt being trapped by ‘Lewy.’
In my book, “I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia,” I share this personal insight into Nicky’s LBD experience, exactly as he wrote it.
The poem follows:
The photo on the wall
if I’m not mistaken, was
taken when our love was
just brand new
It was not long ago, when
we were making the plans,
to love one strong
and be true
A devil in our home,
used deception to corrupt
the loyal angel that
my heart knew
An instant into this
cruel and hateful reception
vengeance replaced the heart that once
beat true
With blinding rage, and searing pain
a ready knife filled my hand
I thrashed with intent
cutting them down and never
was the same again
While I wait, for my date
with the hangman and his chore
and by chance I see my
reflection
that less than human sight that
haunts each tortured night
that stranger in the mirror is me…
– Nicky Zann (written in May 2020)
