In the dark times

Will there also be singing?

Yes, there will also be singing

About the dark times.

— Bertholt Brecht

“Singing about the dark times” expresses a role of art in times of catastrophe and dread. In discussing creative approaches to Alzheimer’s disease, Northwest poet and essayist Holly J. Hughes noted Brecht’s words and said: “I believe that’s precisely what poetry can and should do — it can bear witness to the darkness — and in doing so, can illumine it.” 

Hughes’s mother died from Alzheimer’s disease at the age of 75.  In the preface to a new collection of poetry about this ruinous disease, she wrote that her mother’s decline was “a slow process of subtraction, as she lost her one brain cell, one synapse at a time.”  She added, “As with any grief that feels unspeakable, I turned to poetry.”  

In her anthology Beyond Forgetting: Poetry and Prose about Alzheimer’s Disease (Kent State University Press; foreword by poet Tess Gallagher), Prof. Hughes assembled a groundbreaking collection of poetry and prose from an array of more than 100 contemporary American writers including renowned poets as well as caregivers, nurses, physicians, and relatives of patients with this insidious illness.   

A degenerative brain condition that causes memory loss, confusion, and cognitive decline, Alzheimer’s disease now afflicts 5.3 million Americans, strikes every 70 seconds, and, according to the Alzheimer’s Association, costs for care amount to more than $148 billion per year. It’s estimated that one out of every two people over 80 will develop the disease.  To date, there is no cure and no definitive pre-mortem test for the disease. Some new therapies may delay its progression. 

As more and more baby boomers are called to care for ailing parents with Alzheimer’s disease, the public is increasingly concerned about the devastating condition. When Hughes asked online for contributions to a book of poems about Alzheimer’s, she was stunned by “a tidal wave” of nearly 500 responses.  

The book that resulted, Beyond Forgetting, has been praised for writing that challenges stereotypes about Alzheimer’s while offering solace and insight.  The book received the Independent Book Publishers Association Award and an Honorable Mention from the American Medical Writers Association.

I recently sat down with Prof. Hughes, who lives in Indianola, teaches writing at Edmonds Community College and co-directs its Convergence Writers Series. Her poetry collection is called Boxing the Compass (2007), and her poems and essays appear in numerous journals. She's working with essayist Brenda Miller on a new book about mindfulness, reading, and writing, to be called The Pen and the Bell. 

Robin Lindley: How did your anthology on Alzheimer’s disease come about?

Holly Hughes: My mother, Colleen Lindsay Hughes, died from Alzheimer’s disease in 2001 at age 75; she was diagnosed when she was in her late 60s. I was looking for poetry because I’m a poet and I turn to poetry when times are difficult.  In the meantime, I was writing myself, trying to make sense of it, when I cared for my mother.  Those notes eventually became poems, which I would share at readings.  Inevitably, a handful of people would gather afterward and ask for copies of the poems because they knew somebody with Alzheimer’s. There seemed to be a need for it.  I think it’s unique in being a literary collection of poems about Alzheimer’s disease, but poetry — and all forms of art — reach us on an entirely different level.

Lindley: Were you the primary caregiver for your mother?

Hughes: My father was the primary caregiver. As a retired physician, he was well suited and it was a matter of great pride to him — but of course it was exhausting. I have three sisters, and the four of us took turns going home to give him a break. He bore the brunt of it.

Lindley: Your poem “The Bath” from the anthology is striking. Can you talk about it, and about your poetry that came out of the experience with your mother’s illness?

Hughes: For me, poetry became a way of dealing with the uncertainty. Jane Hirshfield put in beautifully in a quote I used in the preface of the anthology: “Poetry comes into being as a response to a kind of fracture of knowing and sureness: from not understanding, yet still meeting what arrives.” I felt that fracture viscerally; suddenly the world as I’d known it was upended. So “still meeting what arrives” became my mantra as I helped care for my mother, and that allowed me to do what I did the day I was trying to bathe my mother and she was so resistant. I had no idea the result would be this incredible moment of tenderness we both needed. I needed to feel that somewhere she was still my mother, and I believe in that moment, she did know me as one of her daughters.

One of the lessons of dealing with someone with Alzheimer’s is that it reminds you to live in the present. For my mother, in the end, the present was all she had. She could still tell wonderful stories from her childhood, but the more recent past was not available to her. Her appreciation of the present became so acute: she was just so delighted with everything she saw. We’d walk outside and see a sunset, and she’d be awestruck. That was a great gift.

This disease is such a reminder, too, that life is impermanent, that we really only have the moment we’re in. As the Buddhists say, “It’s a dewdrop world.” 

Lindley: Does the title Beyond Forgetting refer to seeing people with Alzheimer’s beyond their memory loss?

Hughes: The title came to me in the early stages of the project. I wanted an evocative title and like the levels of meanings it suggests. Many of these writers lost someone dear to them, so there’s the meaning that the people we love are beyond forgetting. But there’s another meaning, too: that as a culture, we need to move beyond thinking that we are only our brains.

I feel our culture has an obsession with the left side of the brain that handles logic, communication, and language. As I watched all of that taken from my mother by Alzheimer’s I saw there was still so much there. It’s true, it was a huge loss, but I also saw that she was still very much an emotional being. She was, if anything, more intuitive about what we were feeling. Even when she could no longer express herself in sentences, she was still very aware of people’s emotions. 

Lindley: Did your mother still know you?

Hughes: How frequently we’re asked that question. It’s true there was a point at which my mother stopped calling me by name, but I know she knew who I was. Her face would light up when she saw me — or any of her three daughters. Once I could let go of the expectation that she would be the mother she had been, there was so much more room for us to connect. I had to meet her where she was and quit holding onto what she could no longer be. The naming wasn’t so important; what mattered was the quality of our time together.