When Marjorie Burke’s husband, Donald, was first diagnosed with Alzheimer’s disease, she began journaling to process the changes that every day now brought to their lives.
Those words, paired with her husband’s thoughts, were published two years ago in Melting Ice, Shifting Sand. Burke has recently published a second work, a continuation of the memoir, Pilgrimage on Ice and Sand. This book is a solo work, as Donald’s disease has progressed to the point where his life is told only through his wife’s point of view.
Pilgrimage on Ice and Sand picks up after Donald moves to Granite Ledges, an assisted living facility in Concord.
“It’s different for both of us,” Burke said.
Burke said the decision was heart-wrenching for her, but that it was the right thing to do. Donald needed more than one person could give, Burke said.
The final straw was when Burke walked in to find Donald trying to put a bag of trash into the blazing woodstove they used to heat the house he’d built for them. It was becoming a dangerous situation for both of them.
Burke said her two sons, who both live out-of-state, were extremely supportive of moving Donald to Granite Ledges. They had a 45-minute conference call as a family to discuss it.
“They were worried about me, too,” Burke said.
Their sons visit when they can.
Burke’s granddaughter also makes visits with the “furry Burkes,” the family’s rescue dogs.
“There are ways they stay connected,” Burke said of her sons and six grandchildren.
Martha McLaughlin, the program director at Granite Ledges, penned the foreword to Pilgrimage on Ice and Sand. She notes that there are few books written after a loved one with Alzheimer’s moves into an assisted living facility.
In some ways, the move has restored some normalcy, even though the couple now live apart. When Burke was her husband’s primary caretaker he’d call her “the warden” since she was the one enforcing the rules. Now at Granite Ledges, she’s back to being his wife.
When Donald first moved, Burke said she was visiting every couple days. Now, she visits daily.
Donald still recognizes his wife and is still happy to see her.
He sleeps a lot more now. If he’s up and in a good mood when Burke arrives, she’ll spend a few hours with him looking at books or going for “coffee dates” in the dining hall. But some days he won’t be up for a visit and he’ll tell her to go home so he can go back to sleep.
Burke said from one day to the next, it’s up in the air. She’s been learning to adapt and not get mad or upset. She said Donald is doing the best he can.
Some days, Donald is very much in the present, she said. Some days, he’s somewhere else and she has to read where he’s at to make conversation he can relate to.
He still has his sense of humor, too.
At Granite Ledges, they’ve gotten to know other residents and their families.
“It feels like one big family,” Burke said.
Burke will present her book at Gibson’s Bookstore on Thursday at 5:30 p.m. and Sept. 30 at MainStreet BookEnds in Warner at 2 p.m.
For more information or to contact Burke, email infinitelymorepress@comcast.com.