When Holly Hughes’ mother was first diagnosed with Alzheimer’s, Hughes could not let go. She refused to admit her mother was no longer the woman she always knew.
Over the next decade, as her mother “disappeared cell by cell,” Hughes, an award-winning poet, learned to love her mother for her simple joy.
Hughes, an Indianola resident, remembers one attempt at getting her mother to bathe. Her mother awkwardly refused to enter the bathtub, despite being offered a Hershey’s chocolate bar. When Hughes entered the bathtub, her mother was still kind enough to wash her back, providing Hughes with an authentic moment of tenderness in what was a a contentious situation.
The scene is the topic of her poem, “The Bath,” one of 100 poems in “Beyond Forgetting: Poetry and Prose about Alzheimer’s Disease,” a collection of poems edited by Hughes and released in April 2009.
“She reminded me to live in the present because that’s all she had,” Hughes said. “She would be excited by a sunset or a squirrel running by, and all the other little glimpses we rarely stop to think about in our lives.”
In August, Hughes received a national award for the book from the Medical Writer’s Association. The Independent Book Publisher’s Association has also recognized the book with a national award.
Alzheimer’s is the seventh leading cause of death in America, according to the Alzheimer’s Association website. It is the most serious form of dementia, a disease which destroys brain cells, causing memory loss and harming other intellectual abilities. More than 5.4 million people ages 65 or older nationwide are affected by Alzheimer’s and other forms of dementia.
Hughes, whose mother died in 2001, spent five years constructing the book. When she first called out for submissions, she was amazed to receive more than 500 poems within the first few months.
For each submission she asked the poets to provide a line of context for the situation, enabling her to order the poems to reflect the changes that occur as the disease matures. For Hughes, the book was her way of handling her own grief and providing inspiration to caregivers of Alzheimer’s patients.
The poems Hughes received reflected the ability to see humor in the situations and the frustration of coming to terms with the transformation of a loved one.
“This book is a portable support group,” Hughes said. “When caregivers spend long hours indoors working with Alzheimer’s patients, this book provides wisdom from 100 people.”
One of her favorite poems was from an insurance adjuster. Paraphrasing the words of an insurance claim from an Alzheimer’s patient, it shows the irony of a woman who forgot she was cooking and burnt down her kitchen. She also claimed that water dripping from the ceiling, from the bath she forgot about, eliminated the fire.
Another of her favorite poems was about the daughter of a journalist, and the process of the journalist losing his words after spending his life working with them.
“We need to look beyond this notion of simply them forgetting, and to see what we can do and look at this disease with compassion, and honor their humanity and not close them off,” said Hughes, who has taught poetry at Edmonds Community College for 20 years.
Kent State University published the book as part of its Literature and Medicine Series. The renowned poet Tess Gallaghar, who also recently lost her mother to Alzheimer’s, wrote the book’s foreward.
Hughes has since traveled to 13 states promoting the book and spoken with various groups throughout the Puget Sound region.
While she hopes to continue to educate caregivers through her message in the coming years, Hughes said her final memories of her mother, of the cheerful lady who built sandcastles and loved to sing and dance, have changed her.
“She encouraged me to take a more playful approach and near the end we had a lot of great times,” she said.
Silverdale to host MEMORY
WALK this weekend
The Alzheimer’s Association will host a memory walk at Waterfront Park in Silverdale on Saturday, in commemoration for World Alzheimer’s Day on Sept. 21.
Check-in begins at 8:30 a.m. and the walk begins at 10 a.m. Participants can walk either on either a 1.2-mile or 3.2-mile route along the Bayshore Drive at Waterfront Park. A light breakfast and water will be available prior to the event.
About 300 people walked in 2009, raising about $42,000. Event coordinator Stephanie Watson said the goal is to raise $50,000 this year.
“You don’t have to have Alzheimer’s directly in your family to understand the need to find a cure and to take a stand against the disease,” Watson said.
The money will be split between the West and Central Washington Chapter of the Alzheimer’s Association, where it will be spent on emotional and support services for people already affected by the disease, and the national association, where it will fund scientific research, Watson said.
Memory Walk began in 1989 and has raised more than $300 million for Alzheimer’s patients.
