Originally published Sept. 16 in the Concord Monitor
After a diagnosis of Alzheimer’s disease, the only constant for the patient and their loved ones is change.
That’s the premise of a new book by Weare couple Marjorie Burke, 80, and her husband, Donald, 84, who suffers from the disease.
Melting Ice, Shifting Sands is their dual perspective, told in short stories, poetry and reflections. The title is based on each of their experiences.
“When asked to describe what it feels like to be living with the disease, I tell people it is like melting ice; the more it melts, the less safe it is to walk on, and I have to make adjustments to ensure my well being,” Donald says in one of the chapters from his perspective.
Alzheimer’s is a form of dementia, in which brain cells degenerate and cause memory loss. More than 3 million people in the United States, mostly those 60 and older, face the disease.
Burke met her husband when she was 7 years old and he was 11, when he came to her house helping his uncle deliver ice for refrigeration around Watertown, Mass. They only sparsely communicated for the next dozen years, even though they lived in the same neighborhood, the book’s opening poem explains.
Donald, who was a building contractor for many years, once explained to his wife that Alzheimer’s was like trying to get blocks in order. Burke would ask Donald what it was like for him to better understand how to help.
Burke, who says she has a Type A personality and who was formerly a pharmacy assistant, was determined to care for him and maintain her activities. She said that because of her clinical training, it was sometimes hard to switch between being wife and caregiver. Donald joking called her “the warden” for a while.
“I thought I could do it all,” she said.
In her chapter, “Shifting Sands,” she writes: “Balancing my activities with Donald’s and coping with both his mental and his physical changes is a daily challenge. I keep feeling that the sand beneath me is constantly shifting, that I’m left raw and vulnerable.”
The books goes through how Burke got caregivers to help, started attending Concord Regional VNA workshops for people with Alzheimer’s and their caregivers, going to Memory Cafes and creating a support group with friend. She also started “Marjorie’s Monday,” a day for self care, not for errands. Much of that, she said she spent at Gibson’s Bookstore, journaling and writing what would evolve into the book.
She said that some of the effects were humorous and some scary.
“You’ve got to laugh or you’ll cry,” Burke said.
One night, Donald became cold at night, so he went to the bathroom, took the towels hanging there and soaked them in hot water. He wrapped himself in the towels and returned to bed. Of course, shortly after they grew cold again, and Burke awoke to find all the towels missing.
Donald also started to have hallucinations about people in the house when there were none. He would tell his wife he couldn’t shower now, because the people needed to get ready for work first. But he could never tell how many people there were or what their names were. Burke touches on the experience with a poem in the book.
Every day was a new normal, Burke said. Despite the support, it got to a point where Donald’s condition was too much to care for at home on a daily basis.
The tipping point came last December, Burke said. The couple heat their home with a wood stove and have a propane heater as backup. Donald put a plastic bag of trash into the stove. He had also started to wander more.
Their sons were also growing increasingly concerned.
“They weren’t just worried about their dad,” Burke said, “They were worried about their mom, too.”
Donald now lives at Granite Ledges in Concord, and Burke visits him at least three times a week.
She says she spends a lot of time going back and forth.
“Life is different for me now,” she said. “I’m still adjusting to a different way of life.”
Donald doesn’t venture out much anymore, no longer going to Memory Cafes, but Burke still goes. And when she visits him, she says she always gets a grin and an “I’m so glad to see you.”
Burke hopes the book will help others coping with the disease to know they’re not alone and that there are resources available.
“It’s helpful for caregivers to know there’s help out there,” Burke said. She added that caregivers have a bad percentage of dying before their wards because they burn themselves out.
For her, writing about her experiences has helped her cope. She’s already working on a sequel.
Burke self-published the books and had it printed by Town and Country Reprographics. The cover was designed by the granddaughter of a friend.
She will discuss her book Sunday at 2 p.m. at MainStreet BookEnds in Warner and Sept. 22 at 5:30 p.m. at Gibson’s Bookstore in Concord.