What do you think?
Rate this book
Literature and Medicine
Beyond Forgetting: Poetry and Prose about Alzheimer's Disease
A literary collection that illumines the darkness of Alzheimer’s disease Alzheimer’s disease is now estimated to affect one in two persons over the age of eighty and is being diagnosed in people as young as fifty. For the many people now trying to cope with a loved one suffering from this tragic disease, this collection will provide solace and valuable insight for family members as well as for those in the medical community who work with anyone afflicted with Alzheimer’s disease. Beyond Forgetting is a unique collection of poetry and short prose about Alzheimer’s disease written by 100 contemporary writers―doctors, nurses, social workers, hospice workers, daughters, sons, wives, and husbands―whose lives have been touched by the disease. Through the transformative power of poetry, their words enable the reader to move “beyond forgetting,� beyond the stereotypical portrayal of Alzheimer’s disease to honor and affirm the dignity of those afflicted. With a moving foreword by poet Tess Gallagher, this anthology forms a richly textured literary portrait encompassing the full range of the experience of caring for someone with Alzheimer’s disease. Because the writers share their personal stories as well as their poems and prose, this collection will be a valuable companion to anyone embarking on this difficult journey. In their honest, deeply moving, and compassionate portrayals, the voices collected here help illumine the darkness of this passage and help us see, as one of the contributors put it, “the unlikely light shining deep within it.�
- GenresPoetry
247 pages, Paperback
First published May 30, 2009
29 people want to read
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 9 of 9 reviews
August 19, 2022
I picked this anthology back up again after my own Mother passed away last month. Her journey with Alzheimer’s lasted about fifteen years. Consisting more of poetry than prose, these poems are a balm for anyone who is living with the illness or been a caregiver. Trust me when I say that you will feel less alone after reading them.
March 29, 2012
Memory says, Guess again:
Which hand? Then switches
whatever it's holding.
It scrambles her recipes,
teaspoon & tablespoon,
pinch & cup,
steals salt from the shaker,
leaves sugar in its place
An April fool waiting for her to taste
Loss is the starting place of many of the poems in this collection. Loss of memory. Loss of personality and identity. Roles lost to the effects of disease: mothers and fathers have forgotten the children who now care for them. Poems such as She Falls for It Over & Over by Joseph Green (excerpted above) are carefully observed records of declining abilities. Taken together, they are a testament to the varieties of decline. Alzheimer's erodes personality, but each person seems to be worn away a little differently in these poems. Bruce Berger marvels that his father can still work crosswords (Across, Down), while Candace Pearson imagines her mother's life with less and less language in Another Country:
She had thought nouns might be the last
to go, naming carried that much weight.
No doubt surprised to find she had crossed over
to another country, one with no road signs, towns
without title, maps merely lines and elevations.
Most of the poems (indeed, the collection as a whole) move past descriptions of what is lost toward accounts of living with less. Some find humor, or at least irony, in the situation. Sheryl L. Nelms' short poem, Early Alzheimer's, falls into this category:
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
The best poems in the collection help explore what cannot be expressed by platitudes and cliches. They offer freedom from the relentless positivity family and friends may require even in the face of terminal illness. They do not indulge in nostalgia for tidy, loving relationships that may never have existed between parent and child, or demand perverse loyalty to parents who have betrayed their children. John Grey concludes The Strangers in Your Room, for example, with a bitter reflection about a family history of Alzheimer's:
You stare at me like I could be familiar,
but then you turn away.
I'm just one more flower in a vase, one more
photograph you shake your head at, one more
half-eaten cinnamon roll on a plate.
Or maybe I'm your father, the one
who didn't know you from a quilt pattern
in his last days.
You told me once how cruel that was.
So I'm cruelty.
Glad to know you. Glad you don't know me.
A persistent theme in the collection is accommodation, as the writers explore what love means when everything else is forgotten. Some poets describe attempts to find new ways to communicate with ailing parents; attempts that are sometimes futile but also sometimes joyful discoveries of what remains of the relationship between parent and child even after shared memories are lost. In We All Fall Down, Nancy Dahlberg describes her efforts as:
trying to show my mother how love is felt
through the flesh; as if by caressing her feet
I could demonstrate the way to love a child.
Relationships between parents and children can improve in unexpected ways once the child befriends the person their parent has become. In the introduction to Recognition, for example, Kate Bernadette Benedict describes her frustration with well-meaning caregivers who tried to prompt her mother to recognizer her. She isn't trying to bring the past back. Indeed, some of what has been lost wasn't worth keeping. Now, she can take comfort is simple pleasures, like brushing her mother's white hair or listening to her sing:
She does not remember her marriage of forty years.
She does not mourn the husband she cannot name.
The drunken struggles, the blaming, the carping--
nothing of severity remains.
Benedict concludes her poem:
How restful it is, lying here this August day
with my witless mother,
this mother I prize and do not recognize.
Holly J. Hughes describes a similar journey toward accommodation of her mother as she is, rather than how she was. In doing so, however, Hughes rediscovers herself in the role of daughter. The Bath recounts first the difficulty of bathing her mother and then the author's wise decision to turn from persuasion to pleasure, as she strips and enters the bath herself. By abandoning her role as caregiver for a moment, she acknowledges that she needs care, too. She stops trying give her mother unwanted help and asks for mother's help, instead:
So much is gone, but let this
still be there. She bends over
to dip the washcloth in the still
warm water, squeezes it,
lets it dribble down my back,
leans over to rub the butter pat
of soap, swiping each armpit,
then rinses off the suds with long
practiced strokes. I turn around
to thank her, catch her smiling,
lips pursed, humming,
still a mother with a daughter
whose back needs washing.
Not all of the poems in this collection are crafted with equal success. The intensely personal nature of some poems suggest they might have been written more for the benefit of the writer than the reader, but even these may have utility. In the introduction to her own poem, Tess Gallagher explains:
“Maybe those who have met the full unreasonableness endured when a loved one suffers the effects of Alzheimer's are the best comforters of each other...Often there is no way to make the situation less painful or to change the outcome for our loved ones. The pain just has to be acknowledged and even ritualized ...�
In Where We Have Come, Susan Ludvigson says it a different way:
...to see loss
black on white
is to be comforted
a moment
in the early hours,
not left alone
to mourn a mind
dropping its history
like Gretel's bread,
birds swooping behind.
Beyond Forgetting is a thoughtful gift for anyone with a family member living with Alzheimer's disease, and a helpful resource for social workers, doctors, nurses, and caregivers. It can be ordered through the .
June 26, 2017
As a family physician and the daughter of a parent with Lewy body dementia this book strummed my heartstrings in many ways. It was interesting how the poets dealt with their challenges and losses through the different phases of the disease. I laugher and cried and was charmed by the beautiful and clever language. This book will have a place on my shelf at work to offer to those struggling with the long loss process that is dementia.
August 18, 2020
Brava to Hughes for editing this important collection on a topic that's uncomfortable but which affects many lives. I was especially moved by the work of Rachel Dacus, Tess Gallaher, Andrena Zawinki, Jeff Worley, Edward Hirsch, and Holly Hughes herself.
"We estimate a man by how much he remembers." (Ralph Waldo Emerson)
"We estimate a man by how much he remembers." (Ralph Waldo Emerson)
October 6, 2009
Of course, I'm prejudiced. Holly is my friend, and she has done a magnificent job pulling together both poems and pieces of creative nonfiction. The resulting collection breaks the stereotype of Alzheimer's sufferers, opening a hazy glimpse of people who have been loved, who have been distinct individuals their whole lives and who are now disappearing into an uncertain distance from their loved ones. These pieces circle around the conjecture that the watchers are not just losing those they've spend years with--the Alzheimer's clan are moving to another place. Communication, even delight, exists, but for seconds not afternoons. Love, from the family members, from the sufferers still exists, but is expressed in infinitessimal moments. Communication isn't gone...it is changed.
My only quibble, and it is a quibble are the italicized notes at the end of each entry. So often the piece speaks for itself, clearly, beautifully, and the notation simply says the same thing in a sentence or two, draining the impact of the offering.
A superb gift to anyone with friends or family whose loved ones may be moving Beyond Forgetting.
My only quibble, and it is a quibble are the italicized notes at the end of each entry. So often the piece speaks for itself, clearly, beautifully, and the notation simply says the same thing in a sentence or two, draining the impact of the offering.
A superb gift to anyone with friends or family whose loved ones may be moving Beyond Forgetting.
December 18, 2010
This inspired collection provides a definition of art: using a craft to express transcendent humanity. These are needful, well-wrought pieces filled with compelling ideas, emotions and memories. Savor what's here.
Perfect for: "...doctors, nurses, social workers, hospice workers, daughters, sons, wives, and husbands - whose lives have been touched by the disease."
Notable for me: Linda Alexander's "Time With the Dying," Christine Higgins' "The Day Room," Sybil Lockhart's "Naked," Joanne Clarkson's Following the Deer," Donna Wahlert's "Here Let Us," and editor Holly Hughes' "The Bath"
Perfect for: "...doctors, nurses, social workers, hospice workers, daughters, sons, wives, and husbands - whose lives have been touched by the disease."
Notable for me: Linda Alexander's "Time With the Dying," Christine Higgins' "The Day Room," Sybil Lockhart's "Naked," Joanne Clarkson's Following the Deer," Donna Wahlert's "Here Let Us," and editor Holly Hughes' "The Bath"
February 20, 2010
The literature is touching, frightening, and eye-opening. Each author's comments about the circumstances surrounding the piece add new dimension. Whether you are a caregiver or not, you should check this one out.
April 13, 2015
A lovely and moving anthology. I checked it out from the library but now I plan to buy a copy.
April 14, 2012
Really thorough collection of poetry and prose on Alzheimer's, a disease that makes so many silent.
Displaying 1 - 9 of 9 reviews
Can't find what you're looking for?
Get help and learn more about the design.