A collection of moving poems, bravely coping with Alzheimer's disease

Northwest poet Holly Hughes, whose mother suffered from the disease, put out the call for poems about dealing with "the fracture." A remarkable collection is the result.

Crosscut archive image.

Holly Hughes' new anthology

Northwest poet Holly Hughes, whose mother suffered from the disease, put out the call for poems about dealing with "the fracture." A remarkable collection is the result.

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.

This disease asks us to be creative in how we care for those we love, how we spend our time together. Tess Gallagher also talks about this in her beautiful, moving Foreword to the anthology:  “We did something unexpected, Mother and I: we moved beyond forgetting. Each day I bent my imagination, which had formerly been reserved for the classroom and the page, to discovering, for both of us, the best way to carry each hour, each day, each season.”   

Fortunately a shift in the ways we care for those with dementia is taking place. Last fall, I taught a workshop for caregivers at a nonprofit in Seattle called Elderwise, a daycare program founded by Sandy Sabersk to care for people with dementia by working with the arts and gardening. Again, it’s the recognition that there are many ways to engage people besides language. 

Lindley: You include an array of voices in your anthology.

Hughes: It was important to me to include a variety of voices, published poets and people working in the healthcare fields.

Someone asked if I wanted the depressing poems or the funny poems. I wrote back and said, both, we need both. For example, I was delighted to receive this short poem from Sheryl Nelms, who makes her living as an insurance adjuster: “Emma set her/kitchen on/fire/because/she forgot/she was cooking/but the water/gushing through/the ceiling/for the bath/she forgot/she was taking/put it/out.”

Even though losing someone you love to Alzheimer’s disease is difficult, there are moments of humor and moments of grace. That’s what many of the poets tried to capture: moments of grace and the light within the darkness.

Lindley: Your anthology is also unique in that you included a brief statement from each writer on the context of the poem or prose piece.

Hughes: Yes. When I read the submissions, I had the benefit of the cover letter that accompanied them, so I could bring that context and that connected me with the writer in a way that wasn’t possible without that information. I wanted the reader to have that information too, so when I accepted the pieces, I asked all the writers to send a bio and a two- or three-sentence statement to provide context for the poem.

I think the contributors understood that my vision for this book was different from a typical poetry collection because I wanted it to be accessible to people who might not have read a poem since high school.

Another decision I made to reach a wider audience was to accept some short prose. I did get some wonderful short prose narrative incidents that might not be handled as easily in a poem. I was hoping that by including prose with the poetry, people who were afraid of poetry might still buy the book. It’s the Trojan Horse theory.

I’m not sure our culture fully recognizes the prevalence of Alzheimer’s, the toll it takes on lives, including caregivers and families of those afflicted. As a culture we need to recognize and deal with it in a way that honors the humanity of the person afflicted, not continue with the “out of sight, out of mind" response — wanting to put people away when they are afflicted.  These poems ask us look honestly at the lives of the people who suffer from Alzheimer’s disease, and even if some are not easy to read, they’re speaking the truth.  That’s what poetry can do. 

There’s a poem by Linda Alexander, whose father was a journalist, called “Your True Life.”  She ends her poem about him with these lines:  “Yet here is your true life:/ the bright unruffled water,/ a sudden lift of wings.”  This poem for me was a gift, because the image at the end, “a sudden life of wings” is so evocative.  Metaphor allows a freedom that’s possible in the imagination, if not in reality.  

Lindley: Would you like to add any other thoughts on creating this powerful new anthology?

Hughes:  Two things. I’m so grateful to the writers who trusted me with their words. In terms of what I’ve learned on this project: sometimes it’s good NOT to know what you’re getting into. If I’d known how all-consuming this project would become, I’m not sure I would have ventured down this path. But now that it’s done, I’m very glad I did. 

One of the great serendipities was that the book arrived — I first held it in my hands — on the anniversary of the day my mother died. I promised her that I would do something to honor her — and I did. I felt her presence so powerfully in the room that day. The book is dedicated to her and Tess’s mother, Georgia Bond.


Please support independent local news for all.

We rely on donations from readers like you to sustain Crosscut's in-depth reporting on issues critical to the PNW.


About the Authors & Contributors