Your Voice Matters. Share your DLB experience with the FDA

This poem can describe my husband who has Lewy Body Dementia on his worst days. He tries so hard for me to hold the tempest at bay, but Lewy is cruel and merciless:

The Last Battle

The enemy has come—
invisible, relentless,
an inhuman horde clawing
at the fortress of my mind.
I feel them tearing memories,
shredding the fibers of thought,
turning familiar faces
to shifting shadows,
and I rage.
I scream into the void
where I once stood strong,
where words had weight,
and time could be grasped
like an old friend’s hand.

But even as the storm rips through me,
I feel the circle around me—
your arms, your touch,
your quiet voice anchoring me.
Though the battle surges,
and the ground beneath me trembles,
you are here, always,
with a love that bends but does not break.

I thrash in the night,
fighting the beasts that stalk my dreams,
but your hands find me in the darkness,
your calm seeps into my bones.
I know I cannot win this war,
yet I fight, because you are here,
because the faces of our children,
their love, their laughter,
are shields against the chaos.

I am not lost to this enemy,
not while you hold me.
I endure because you love me,
because even in the fog,
I know that I am held.
This battle may take my words,
my thoughts, my sense of the world,
but it will not take the love that sustains me.
It will not steal the strength
you give me with every look,
every whispered “I am here.”

I fight,
and I will fight,
until the final breath,
not for me,
but for us—
for the arms that still hold me,
the hearts that still beat with mine.
We will go to the end of this war together.
You will hold me when I fall,
and in your love,
I will rest.

Life has a way of guiding us through challenges we never expected, and it’s been both a journey and an awakening as I walk alongside my husband, John, through the trials of Lewy Body dementia. I hope our poetry sheds light on the strength, love, and courage that caregivers and families need and inspires others to embrace hope and find support along the way.

I am sharing this here to honor John, our family, and the many caregivers who give their all, every day. Thank you for joining us on this journey.

@mrjohnwebb it’s so beautiful! I have to figure out a way to save it, if worse comes to worst, and I need to read it again. Thank you for your generosity in putting the poems in these discussion groups.

I have an iPhone. If I hold my finger down on the poem above, I can copy it. From there I can paste it to a new file and save it. Hope that helps!

I copied and pasted it to my notes on my phone and then I will email it to myself and print it. I want to be able to read it whenever I need it. I hope that helps you to save it. 😊

Too bad I missed this. I have been diagnosed with both Alzheimer’s and Lewy Body. I don’t think it has really been decided. I’m getting a second opinion next month.

I have terrible balance issues, and a Functional tremor.
Is that typical for your loved one?

Bless you all.
Susan