Maria Shriver

Love in the Time of Alzheimer's

By Nancy Calhoun

Each September, World Alzheimer’s Month is your chance to join the global fight against Alzheimer’s disease. There are more than 35 million people worldwide living with dementia and more than 5 million Americans are living with Alzheimer’s disease – the most common form of dementia. “Go Purple” on Friday, September 21st to mark Alzheimer's Action Day.

It has become common, sadly, for almost everyone you meet to have a friend or relative who is going through the fierce anguish of Alzheimer’s Disease.

It is a terrible experience for a family to live with, one that changes everyone involved. But when it is your spouse, your dearly loved life partner, it is a whole new dimension of pain.

When your husband/lover/best friend of several decades is now more like a small child and your relationship to him is more guardian than wife, the daily pain becomes unspeakable.

Indeed, speaking begins to feel futile because your words vaporize right before your eyes. He has lost interest in current events, news, etc. so we don’t discuss or debate them as we used to.

Perhaps more than anything else, it is this dreadful vacuum in communication that has been so disturbing.

It is precisely what turned me to writing poetry. The feelings must be expressed if one is to function at the level demanded by this caregiving relationship.

These poems are mostly about loss of connection, intimacy and communication, but they also speak of my determination to not be defined by this disease.

If this is the same challenge facing you, I hope you have someone to whom you can speak the truth about your feelings.

No matter how much you love this person, your feelings of sadness, anger and hurt are completely normal and they cannot harm you unless you bury them deeply inside out of shame or embarrassment.

Unspoken, they gather power and drain energy. These poems helped me to speak of my pain and find a release.

Howl

Don’t bother with the moon;
howl instead at love
that weaves your breath with another’s,

in the intimacy of oxygen
only to take it back
while you still need to breathe.

Howl at the vampire of memory,
who broods in the labyrinth of empty rooms
and hedge mazes of remembered events.

Howl at loneliness that fills the lungs
and drapes itself heavily around the shoulders
while memories pile up

on your side of the bed.

- First published in “Sip Wine, Drink Stars”

A Single Moment

In and out of the sunlight,
darting between familiar shadows,
patches of lucidity amidst the fog,
you search for connections and meanings
to understand what was effortless
only yesterday, but which now is gone.

I want to help you, fix you, hate you,
I want to scream, to laugh, to fall apart.
I long to be indifferent –
but I am too accustomed to loving you
to change now, the line between where you end
and I begin blurred like a garden of wildflowers.

I wish to be larger than this mishap,
this mystery, that doctors only describe
in the vaguest terms, while our specifics
become memories that fade and falter,
your sweetness and submission exasperating
when I need a wall to push against.

My discontent feels gritty in my mouth
like pearls I have ground with my teeth.
I learn to avoid the fruit that will not ripen
and the metaphors without meaning;
I ride the back of the wind as far as I can go
in a single moment, for that is all there is.

- From “Dance on a Dirt Road: Poems for Life’s Rough Places”

Witness

Life is good, you tell a friend.
We love this quiet place, this house.
I have a wife who never loses patience
with my confused forgetfulness,
and, oh yes, I have my health.

I hear you say how blessed we are
to share this life, this love,
your innocence shining through
the words, an illuminated psalter
to your truth, which never fails.

Your docile acceptance sits like a seed
beneath my tongue, a reminder of how lost
we are to each other, though I alone
wake each morning with words unspoken,
shrouded in futility, while your slate is clean.

You speak for me but with no memory
of my angry outbursts and pointless tears.
Do you know that I would walk beside you
down any path, no matter how thorned
and bent to have you understand my grief?

For now, your sweetness carries us both
on our daily walk in opposite directions,
though you know I never leave your side
and your gift to me is your oblivion
and cheerful farewell as less of you returns
each day.

- Previously unpublished

Clearly, all the self-expression in the world does not change our realities.

But putting my truth on paper gives me “permission” to feel and speak honestly about my difficult and conflicting emotions.

I believe it helps me give the quality of care that he deserves and I intend.

And I know that poetry allows me to reflect deeply and honestly on who I am, both as a caregiver and as a woman. It is life-affirming. 

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After a professional life in corporate America, Nancy Calhoun retired to devote herself to writing full time. Her first book, a collection entitled Sip Wine, Drink Stars, was published in 2009 and offered a glimpse of life in southeast Arizona’s wine country. In Dance on a Dirt Road, Poems for Life’s Rough Places she offers observations about the challenges of keeping the dance alive when the road fills with potholes. Her work has appeared in CamrocPressReview.com, Persimmontree.org, Touch, the Journal of Healing, and PoetryMagazine.com. She blogs at http://nancyinsonoita.blogspot.com.