Learning About Alzheimer’s, Myself, and God

(And Determined to Remember the Forgetting) 

By Mark A. Taylor 

I sat with my friend Joan, a gentle, pretty 83-year-old, who is the picture of Southern grace and charm. She was her husband’s caregiver for the seven years he suffered with Alzheimer’s disease, until he died in April 2021. I was interviewing Joan for my website, Unchosen Journey: A Caregiver’s Walk with Alzheimer’s (www.unchosenjourney.com).  

“How did you cope with his death?” I asked her. 

“Our 59 years were good years,” she said. “But today I want to remember the hard times.”  

“Why?” I responded. I wasn’t expecting this—or her reaction when I pressed her. Her voice caught. She looked down at the floor silently shaking her head, and then choked out, “I can’t talk.” By then I had tears too, so I just waited for both of us to compose ourselves before going on. It seemed like several minutes. 

“This is the only way to accept the loss,” she told me, finally. “If I remembered only the good things, it would be hard to live without him. But when I remember the times he struggled, the times we both had trouble dealing with it, it’s easier to live without him.” 

CHERISHING MEMORIES 

Joan was echoing at least part of my motivation for starting my website. When I introduced it, I spoke about remembering. 

“Since my wife’s Alzheimer’s diagnosis, her memory has been evaporating,” I wrote. “I can’t reverse the losses, but I’ve decided to do the next best thing. I’m going to keep a chronicle of this journey. Here, in this space, I want to remember the forgetting.”  

Not that my wife is dead, mind you. No, she’s very much alive, sitting quietly at the breakfast table as I write the first draft of this piece. Our times together have become more and more quiet since her diagnosis of Alzheimer’s disease was confirmed in December 2019. Two years later her neurologist ordered tests to confirm a second condition, Parkinson’s disease. Soon we “went public,” announcing these developments in a Christmas letter and on Facebook. At the urging of three who know us—a good friend, a family member, and a former colleague—I decided to write regularly about my reactions and conclusions and questions experiencing this new life we’d been forced into. And so, I started the website in March 2022. 

More than a year later, and after almost four years of living this “unchosen journey,” I’ve come to some conclusions. 

ADMITTING WEAKNESS

As never before, I’m resonating with Rich Mullins’s “We Are Not as Strong as We Think We Are.” Perhaps anyone, looking at someone they love, head bobbing with a Parkinson’s tremor, unable to finish the sentence she started, would agree with Rich: “We are frail.” And when confronted with the mishmash of lucidity and confusion that characterizes the early Alzheimer’s patient, many might ponder how “we are fearfully and wonderfully made.” Each diminished capability sparks new awe at the creation that made it all work so well together in the first place. Alas, only in loss do we most appreciate what we enjoyed without thinking. 

But as Evelyn loses her strength, some days I wonder how much I ever had. While I’m pleased I’m learning how to manage our household, monitor her medicine, and—after any number of mistakes and mishaps—cope with her ever-changing condition, I regularly see evidence of my own weakness: Waves of grief punctuated by tears. (Alzheimer’s brings a succession of losses, each of them another occasion for sadness.) Frustrated reactions to spills or other messes or the need to go slowly, repeat each step of the process, and give the same information again and again and again. (Five years ago, I would have said I’m a patient person. Now—especially at the end of many days—my patience wears thin.) 

We spend so much of our lives projecting a persona of having it all together. I’m blessed at this late stage to begin understanding what the apostle proclaimed, “For Christ’s sake, I delight in . . . difficulties. For when I am weak, then I am strong” (2 Corinthians 12:10). 

CHERISHING FRIENDSHIPS

People who love us have made up for my weakness. Examples: 

• Volunteer caregivers who allow me to get out of the house and satisfy my extrovert compulsions to talk and laugh and cry with others. (Evelyn and I have many pleasant moments. But she has lost most of her ability to demonstrate companionship. Thus, the increasingly quiet days, mentioned above.)  

• Friends at dinner or dessert who ignore Evelyn using the wrong utensil, getting up and down repeatedly throughout a meal, or retreating to the couch while the rest of us visit at the table. 

• The parade of hugs and friendly greetings in the hallways at our church building. The watchful eyes of a dozen different friends who tell me where Evelyn has wandered or look for her in a restroom or find me when we’ve become separated. 

• Over and above acts of kindness: managing a major home repair, filling our freezer with food, tackling housework I never would have asked a friend to do. There’s not room here to list the gift cards, books, or flowers. The goodness goes on and on.  

Most of these people are responding not only to us, but to God who has taught all of us that he is glorified by our service to others. And that leads me to the most important lesson. 

SUBMITTING TO GOD 

As soon as I posted about our new life, I began receiving a stream of good wishes from people all over the world saying, “We’re praying for you.” That stream has become a river, a mysterious, marvelous flood of intercessions asking God to bless us. And he has. 

Evelyn’s deterioration has been slow, slow enough for a friend to mention and her neurologist to notice. The time has given me opportunity to learn how to cope. It’s a slow, sad slog, but only occasionally do I feel overwhelmed.  

Again and again, I reflect on the promise of Jesus who told us service to “the least of these” is really service to him (Matthew 25:40). When I can remember that Jesus is watching—when I deal with soiled laundry and bathrooms, prod pill-taking or good grooming, offer three sets of pajamas before finding one that works, or plead five times just to come back to bed after I’ve already been drifting off to sleep—I begin to find the strength and the will to carry on.   

But it’s a journey, an unchosen journey. I can’t imagine taking it without the assurance that “the God of all comfort” (2 Corinthians 1:3) notices and cares. And so I regularly ask him to teach me what I can learn along this new path, and I’m waiting to see what I become as I take each new, tenuous step.  

Mark Taylor retired from a 40-plus-year career at Standard Publishing (now Christian Standard Media) in 2017. He was editor and publisher of Christian Standard for the last 14 of those years. He and his wife live north of Cincinnati, Ohio.