If there is an upside of having early-onset Alzheimer’s, it is that most of us are otherwise in good health. That is much less the case when the disease strikes later in life, as the recent book, One Couple’s Journey With Alzheimer’s Disease: Melting Ice, Shifting Sands, makes clear. Donald, who has had Alzheimer’s for many years, has been showing steady decline for years, and Marjorie, his wife and caregiver, struggles to meet Donald’s many needs.
“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, a retired general contractor, says. This is no casual metaphor. As a boy of eleven, Donald delivered ice to his neighbors. And he learned to drive a car just by observing what other drivers were doing. As Donald commented, “The ice is melting. I’m on unsteady ground and need to find new meaning and purpose.”
The thread of this story is Donald’s worsening dementia.
“Lots of time now I’m not even aware of what I am doing,” Donald acknowledged. He noted an instance in which he turned on a classical radio station, but then soon turned off each of his hearing aids.As a result, “I can’t hear the music, or anyone who might be talking to me. I put my cane down, walked away, and I’m not aware of what I’ve done.” Nor is he always cognizant of the repetitive motions of his fingers and his feet.
Marjorie, wary of caregiver burn-out, makes a point to obtain respite for herself on a regular basis. She writes poems, many of which are included in the book. And in a radiant chapter titled “Making Connections,” Marjorie commented, “The human spirit is resilient, so finding and making connections helps the person with Alzheimer’s reclaim a vital part of the self. Deep inside, the essential Donald is here.” Marjorie likens the process to husking an ear of corn, peeling away “the overlying husks in order to grab rather than trying to grab the inner ones first to get to the cob itself. I have to peel away external layers as well as the fine silk hairs that serve as a distraction in order to find the inner person who most certainly is still there waiting for a connection.”
In another insightful passage, Marjorie recounted her and Donald’s trip to the Currier Museum of Art in Manchester, New Hampshire. The museum also functions as a memory café, a place where people with compromised memory can appreciate art and music. But there is one traditional activity that Donald can no longer fulfill: preparing the house for winter. As Marjorie puts it, Donald “grieves” for the decades for this almost sacred task.
One of the things that strikes me about the Burkes’ book is how Donald’s physical pain is so acute. One thinks of Alzheimer’s as a largely painless disease. But through the aging process, Donald has developed many chronic aches and pains. And under a dictated chapter titled “Where Am I? Who am I?,” Donald conveys the ghastly later-stage symptoms that can only be experienced by living through it. Here is a sample:
“Five and a half years after being diagnosed, life gets more confusing for me all the time as this, which began as a tropical storm and has turned into a full-blown hurricane, continues to take its toll on me as well as those around me. I can usually rise to the occasion with other people, to the point that many don’t realize how compromised my memory has become….
“I hate this constant dizziness that I live with. Hate [Donald’s emphasis] really isn’t too strong for my feelings regarding the dizziness. Of course, my rational self knows that I need to keep it with me to prevent those falls that scare everyone and cause serious damage to my arms and elbows with abrasions and lacerations….”
Near the end of the book, Marjorie matter-of-factly states, “The behaviors Donald exhibit go along with late-stage Alzheimer’s. I had been hoping we might escape some of them, since they don’t happen for everyone who gets the disease.” Hallucinations have become common. Donald often asks strange questions, such as “Where will I sleep because there are all these people in the house?” Donald and Marjorie are churchgoers, and as she has observed, Donald “likes to take the hands of women and stroke them, or blow on them if they are cold.” In a separate incident, he patted the rear end of a young woman, assuming he was pushing her wallet back into her pocket, when it was actually her cellphone. “Yes, I laughed later, but I was horrified when it happened,” Marjorie reported.
Donald’s narrative ends where no one wants to arrive: the dementia unit in Granite Ledges nursing home.