Barry’s Story

“Would you know my name if you saw me in heaven?” are words from an epic Eric Clapton composition to help him live through grief when his 4 year old son was killed in a 1991 fall from from a New York skyscraper window.

“Do you know my name” is also a question you might put to an Alzheimer’s victim and it would be a toss up if the answer given you is a good one.

I wrote the following with Alexa and Monica as a commentary on dementia.

We lost you long before we lost you.
Your body was still here,
but the person — your spark, memories, and voice — was slipping away.
The heartbreak was for two losses: a slow one, quiet at first,
and then a final one that everyone recognises.

We lost you long before we lost you
The world kept saying you were here,
but we knew better. Your hands were still warm, your heart still beating,
yet something quiet slipped away long before your final breath.

And your brain wasn’t in touch with your body as well as it should be.

We learned to grieve in stages, in moments, and in the spaces where your voice used to live.
A thousand tiny goodbyes before the last one came.

Still, love stayed.
It stayed in the home, in the stories,
Just as your name still softens the air.

And though the world only counts the day you left,
we remember the long road before it —
the slow fading, the gentle holding on, the love that never dimmed
even as you did.

We lost you long before we lost you,
but we hold you now in full colour.
Not the fading, but the living.
Not the leaving, but the love.
We lost you long before we lost you
There were days you sat beside us but in another world,
your eyes still bright with something we couldn’t quite reach anymore.
A familiar face, a fading map, a voice that wandered through half remembered rooms.

We learned to hold your hand as if it were a tether to the person you used to be.
We learned to smile when you asked the same question for the umpteenth time,
because love repeats itself as many times as needed.

We watched memories loosen,
slip through your fingers like sand you couldn’t keep hold of.
And still, we stayed — because love stays, even when memory doesn’t.

There were moments, tiny flickers, when you came back to us — a joke,
a look, a name spoken right — and for a heartbeat we had you again.
Those moments were gold.
We held them tight.

But the truth is simple and heavy as stone:
we lost you long before we lost you.
Long before the quiet room,
long before the final breath,
long before the world said you were gone.
Yet here’s the part grief never takes —
the you that lived in us.
The stories, the laughter, the extraordinary reasonableness,
the love that outlasted every forgetting.

You slipped away twice, but you remain once —
in us, with us, carried forward in full colour.
Eventually you sipped into eternity.
Soft, gentle, like someone drifting off rather than being taken.
We lost you long before we lost you,
and eventually you sipped into eternity

There was no sudden leaving, no door slammed shut, just a slow unravelling of the threads
that once held your stories together.

Some days you were almost here,
a flicker of the old spark,
a smile that knew our names
even if your voice didn’t.
Other days you drifted, far beyond our reach,
as if walking through a fog only you could see.
We held on anyway.
We learned to love you in the moments you returned,
and to love you still in the moments you didn’t.
And when the time finally came,
you didn’t fall, you didn’t fade —you simply exhaled and slipped past the veil
like someone taking one last gentle sip before setting the cup down.
Eventually you sipped into eternity, quiet as a candle going out,
but leaving warmth behind in every heart that ever held you.
We lost you long before we lost you,
but we carry you now in the place where memory and love are everlasting.