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The Poetry of Caregiving

By: Caroline Johnson

It was a chilly winter day. I turned to write a homework assignment on the whiteboard for my English students. As I wrote the date, January 26, I froze: It was the one-year anniversary of my mother’s death. I thought about her funeral and how the soil was too frozen at the time to cover the casket. I wondered if it had thawed now. I wondered where she was.

As the family caregiver for both of my parents, I witnessed firsthand the traumatic effects of memory loss. My father’s dementia was the byproduct of a rare neurological disorder; my mother had full-blown Alzheimer’s. As a way to grieve their loss, I wrote poems over a 15-year period. These poems were published this past May in a book dedicated to caregiving, entitled The Caregiver (Holy Cow! Press), which contains poems about Alzheimer’s, Parkinson’s, hospice, and many other concerns I encountered on this roller coaster journey of care. The poems became a sort of calling for me, and I am including some excerpts from them in this article.

A mother of five, my mother was a very creative, resourceful and extroverted person who made friends wherever she went. Even with her Alzheimer’s, she remained gracious, despite the cruel nature of the disease. She would “wander into each guest’s memory, making friends with strangers, whistling a tune each day” (“Borders”). Despite Rheumatoid Arthritis and a shunt surgery, she remained strong.

It was a gradual progression. She could never remember the lines in a play she was acting in. This morphed into more forgetting, then delusions, then wandering. Her home became foreign to her, and we had to put a lock on the door:

“I’m going home,’ you say confidently, in a cloud of delusion, as you step over yesterday’s daffodils, and walk away from the moon.” (“Wandering”)

It was about that time when she began thinking there was another Caroline, one that was perhaps both evil yet also generous. I describe this in my humorous poem, “Donut Holes”:

“Do you know someone has given me a whole closet of clothes? Caroline, did you do that? … Or was that the other Caroline?”

Towards the end, my mother needed to be spoon fed. I describe this spiritual act in the poem, “A Mother’s Love”:

“The nurse sits her up in bed.

She winks one eye open and I feed her

A spoonful of stuffing and gravy.

With brown eyes she smiles, and the smile

Lasts me the whole day—more than 77 years,

More than one week in a hospital bed,

More than a generation,

More than the love a mother can show.”

My mother was a hospice volunteer in her younger days. Both my mother and father were on hospice at the end, and we welcomed the support, though it is always difficult when you witness someone dying: “Seeing Mother as Raggedy Ann / in hospice clothes / shakes me up, rattles my bones” (“Conjuring”). I was holding her hand when she passed. Like so many mothers, she wanted to make sure everybody else was satisfied before she could let go.

During the last year of my mother’s life, my husband and I participated in a Walk to End Alzheimer’s. We also organized our own private bike-a-thon, “Ride for Gladys.” She passed away shortly afterward.

I don’t remember when I wrote the poem, “Alzheimer’s Dream,” but I’m sure it was during the middle of her illness when she was struggling with delusions and trying to stay sane. In the poem, I write about how she has become a stranger to me; nonetheless, I, like so many daughters of mothers with memory loss, craved her company:

“Let’s sit down here and talk.

Let’s look at the weather.

Let’s do everything to be together.

Let’s try not to remember,

Have a drink to forget

That we ever once met a lifetime ago

When I called you mother

And needed you so.”

I still miss her, but she instilled in me a love of creativity, art, music and people. I will always treasure her special gifts, and these came through even when she faced the most devastating challenges.

Caroline Johnson has two poetry chapbooks, Where the Street Ends and My Mother’s Artwork, and more than 100 poems in print. Nominated for the Pushcart Prize and Best of the Net, she won 1st place in the Chicago Tribune’s Printers Row 2012 Poetry Contest. She leads poetry workshops for veterans and others in the Chicago area. One of her favorite activities in the past was watching James Bond movies with her father. Visit her at

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