Six years ago Marjorie Burke, 82, started asking her husband Donald, now 86, what it’s like to have Alzheimer’s disease.
“It’s like standing on melting ice. I’m unsteady,” he said.
Since 2009, when the retired building contractor first struggled to open windows and doors and lay things squarely on a table so they wouldn’t fall off, Marjorie has tapped into moments they’ve shared in nearly 60 years of marriage to reach and spark joy in her soulmate. Recently, the memories have become touchpoints of recognition. The couple’s closeness has boosted communication.
It also enabled the creation of a very unusual memoir, “Melting Ice — Shifting Sand: One Couple’s Journey with Alzheimer’s Disease,” they wrote together about coming to terms with his illness. The book includes alternating accounts of Donald’s mounting struggle on melting ice, and Marjorie’s simultaneous walk on shifting sand, as she persevered to care for and stay close to her husband. Their second book, “Pilgrimage on Melting Ice and Shifting Sand,” due by summer’s end, covers the two years he’s spent at Granite Ledges in Concord, beginning with the decision to move him to assisted living “and the agony around that. Was it guilt or sadness?” Marge says.
The Burke’s books on Alzheimer’s join a commanding array of literature on one of medicine’s most pressing and confounding topics. “Melting Ice — Shifting Sand” may be the only memoir in which both caregiver and patient write or dictate alternating chapters about what it’s like to live with the disease as it advances. With this book, self-published by Marjorie Burke and printed in Concord by Town and Country Reprographics in 2016, the Burkes joined the ranks of retirees who became first-time authors during their senior years — sharing unique life stories with valuable lessons for others, plumbing local history for little-known tidbits, or crafting fiction from lifelong interests, careers, or experiences. The book is for sale at independent bookstores including Gibson’s in Concord, Main Street Bookends in Warner, Morgan Hill Bookstore in New London, and at Toadstool Bookshops in Milford and Peterborough.
As baby boomers come of age worldwide, changes in the publishing industry have made the process of getting into print more egalitarian and accessible, enabling self-publishers to pay for printing, computers to print smaller runs, and writers to get their messages out quickly on e-readers such as Kindle and Nook.
Although there are no statistics on first-time senior authors, “There are a lot of seniors who self-publish,” says Jim Milliot, editorial director of Publisher’s Weekly, a trade magazine that has tracked American publishing since 1872. “What we’ve found is a lot of people self-publishing books are older people wanting to get their life story down, in book form, to have and to give out to relatives.”
According to Author Solutions in Bloomington, Ind., the nation’s largest provider of services for self-publishers, roughly half the writers who use supported self-publishing are over 55; 59 is currently the average age. Fifty-nine percent are male, compared to 41 percent female, and 80 percent have no children currently at home.
Three conditions enable authors to write a book, says Keith Ogorek, the company’s former marketing director, now head of its Author Learning Center. “You need discretionary time, discretionary money, and something to say. Usually that doesn’t happen until your later years. Most seniors don’t write because they want to write the next bestseller. They have a story they want to preserve — either theirs or local history. Or, they believe they have something to say that can help others, e.g. financial or parenting advice, life lessons, or books on how to run a company. Others want to be published because they want to support a business, ministry, or cause, and use their book as a calling card.”
“There are more people now who are in the second half of life who are telling their stories through writing,” says Dan Chartrand, owner of the Water Street Bookstore in Exeter. “I don’t know that everyone who writes is destined to be published.” Some people just write for people they know and love, he says.
For Marjorie Burke, a retired pharmacist, the impetus for the books came from her desire to help Donald — then later, a desire to help others in their situation. “I wanted to learn to be a better wife and caregiver. I just kept asking him questions,” she says. “What helped was how open he was to answering them. The act of writing made me feel closer to Donald and gave me peace and joy to think back on various things. It’s been therapeutic. Alzheimer’s is a terrible disease and it affects the whole family. Not only did it draw Donald and me closer together, it’s brought our kids closer to us, too.”
Through writing and recording her thoughts and emotions, she learned important lessons about coping: “Number one, take care of yourself first. You can’t pour from an empty cup. For a Type A personality it was difficult to agree that I needed help. Number two, together we could get through this. A key to that was the closeness of our relationship. Our mothers didn’t want us to marry each other. We learned to communicate well from the beginning.”
For his initial entries in the their first book, Donald was able to describe changes he was experiencing, and how that made him feel. Currently, Marjorie records observations of her husband, details of their visits together, and the chronicle of her own journey without him at home, which have formed the crux of her sequel, “Pilgrimage on Melting Ice and Shifting Sand.”
Today, Donald can’t participate as he used to. His hands are too shaky to play cribbage. His other favorite game, Scrabble, which requires counting and spelling, is out of the question. “We found other things to do, go out for a ride in the car and enjoy nature. He loves trees, lakes, and clouds, and visiting an alpaca farm in Hopkinton, and whistling to them through the open window.
Marjorie continues to connect him to memories and family. She made a memory book starting with his childhood, including their shared experiences growing up in Watertown, Mass., and chronicling his life until he got sick. She decorated his room at Granite Ledges with family pictures and figurines of pigs from his home collection, reminders of his uncle’s pig farm in Nova Scotia. He enjoys seeing photos of their two sons and their wives, six grandchildren and assorted dogs. One son regularly forwards cute cell phone photos of the 12 canines he rescued, including a bijon frise, a Great Pyrenees, and a St. Bernard. A picture of the first dump truck Donald’s company owned hangs on the wall of his room. “He’ll look at that. He’ll tell me sometimes he misses his work.”
Still intact is Donald’s sense of humor. “He recently looked at a bruise on my arm and said, ‘Sue ’Em!’ So compromised is his memory, I just have to chuckle when he comes out with these things. There’s joy amidst all the sadness.”
Silver Linings is a continuing Union Leader/Sunday News report focusing on the issues of New Hampshire’s aging population and seeking out solutions. Union Leader reporter Roberta Baker would like to hear from readers about issues related to aging. She can be reached at email@example.com or (603) 206-1514. See more at www.unionleader.com/aging. This series is funded through a grant from the Endowment for Health.