Many books on dementia offer information and practical guidance, but rarely do they invite readers into the heartbreak of this disease with such honesty, vulnerability, and hope as Karen Martin’s Memorable Loss: A Story of Friendship in the Face of Dementia.
Martin is a writer and retired school teacher. In a touching tribute to her beloved friend, she offers a window into the subtleties of dementia, reminds us that dignity and personhood are intrinsic, and encourages us to cleave to love when language and memory fail.
Martin met her friend Kathleen in a church small group. Although a span of 40 years separated them in age, they were both educators with similar temperaments and soon formed a fast friendship. From the start, both suspected their bond was “God-given,” but neither anticipated that Martin would be the one to shepherd Kathleen through the numerous and diverse challenges of dementia.
When Kathleen’s memory lapses progressed from occasional to continuous, and her meticulous systems of notes and reminders could no longer ensure she’d remember to eat, the unlikely friendship blossomed into something far more familial. Kathleen had little family support, so Martin stepped in to remember when Kathleen couldn’t. Her role as a casual companion deepened to helper, then to caregiver, and finally to the loved one who held Kathleen’s hand through confusion and agitation, the hospital visits, and the last, fretful hours of life.
In recounting their unique friendship, Martin emphasizes the privilege of walking with Kathleen through these difficult years and offers sufferers and caregivers alike affirmation that although memories fade in Alzheimer’s, the attributes that define us always endure. “Whatever the disease does, whatever detriments it inflicts,” she writes, “the heart of a person remains steadfast” (13).
My Own Friendship
Martin’s experience mirrors my own, offering both hope and a road map for the future.
Although memories fade in Alzheimer’s, the attributes that define us always endure.
Every week, I visit my friend Violet (named changed) at the memory care center she calls home. I always find her in the same spot, on a couch in the common area. Sometimes she’s participating in a song or a game involving a balloon and a fly swatter. At other times, she’s just staring into space.
I greet her with a gentle touch on the arm and an enthusiastic “Hello!” and I’m grateful if she returns my smile. The glint of recognition and affection I’d seen for years faded away months ago.
Violet thinks I’m a nice staff member with a Bible and no longer remembers that, as she has no family, I became her source of daily support years ago. Nor does she remember her dog, her pastor, her friends from the church she attended for two decades, or how she and her late husband would pick blueberries at the local farm.
Her world has shrunk to the bright, white walls of the memory care center, with its continuous soundtrack of ’50s tunes playing in the background. Her reality is the present moment.
Yet during each visit, tears of joy mist my eyes because, even in the fog of dementia, Violet can recall one thing. After I read Psalm 23—a passage she once knew by heart but now receives with a slight furrow of her brow—I hold her hand and I pray the Lord’s Prayer with her. Every time, my dear sister in Christ, my friend who no longer knows me and can barely speak, mumbles the prayer along with me.
Violet has forgotten much of her past and can’t process her future. But in some wordless, shadowy part of her brain, she still remembers she belongs to God.
Slow, Uneven Decline
As a physician, I’d studied dementia and cared for numerous patients afflicted with it. However, I only fully understood its subtleties after walking alongside Violet as her caregiver. Martin describes these nuances with sensitivity and clarity, illustrating for readers the insidiousness with which dementia progresses.
In Alzheimer’s, momentary lapses in memory or word retrieval worsen slowly, often with such furtiveness that at first, both sufferers and their loved ones explain away the changes. Caregivers assume more and more responsibility, often without fully realizing that the steadily mounting burdens indicate an underlying illness. “I had, without really noticing the passage of time,” Martin writes, “moved from taxi, to companion, to personal assistant” (34).
Martin further offers caregivers a framework for anticipating and understanding the confusion and difficulties that arise as the disease advances. She notes that conversational skills deteriorate less rapidly than other cognitive domains, so sufferers with dementia may seem much more functional than they are. As the disease progresses, conversations become more difficult because sufferers no longer have the memories required to contextualize.
Similarly, over time the world of an Alzheimer’s sufferer narrows; going out, even on once-cherished outings, produces anxiety, and only the small and familiar confines of home feel safe. All these changes progress insidiously, making the journey of dementia a harrowing and confusing experience for sufferers and caregivers alike.
Heart-Rending Disease
Some of the most heart-rending moments of the memoir are also the most illuminating. Martin details how discussing Kathleen’s diagnosis with her proved fruitless and even cruel because Kathleen would forget the conversation.
Each time the subject was raised, Kathleen took the news as if for the first time, with tears, fear, and distress. Such moments reveal the hard reality that sufferers often can’t “adapt” to their illness because they lack the short-term memory to recall and learn new information. Martin asks, “How could she begin to adapt and to accommodate a disease that she couldn’t even remember she had?” (43).
Such revealing and informative points offer encouragement to loved ones facing the long road of dementia care and also reflect the depth of Martin’s love for Kathleen. She illustrates the fine details of Alzheimer’s so effectively because she was consistently present with Kathleen throughout them. She offers caregivers valuable insights to prepare their hearts and minds.
Remember to Love
Martin’s most ardent message in Memorable Loss is that human value and identity persist even when memories fade. She urges readers to challenge cultural narratives that define worth in terms of capabilities and instead to uphold the truth: our value springs from our origins as image-bearers of God.
In one of many such exhortations, she writes,
The stereotype that feeds widespread fear associated with Alzheimer’s is that dementia will steal character and rob families of their loved ones. It has been described as a living death. This bleak view is one that focuses on loss rather than on what remains. . . . Even when dementia is at its most advanced, people will respond to smiles, hugs, and handholding, even more so if accompanied by a familiar voice. . . . Kathleen may have lost significant short-term memory—even her initial diagnostic tests revealed this—but her personality remained present. Facts, places and people were lost but her character, her essence, was not. (171)
Memorable Loss is a strident plea to love our neighbors well. Martin encourages caregivers, friends, and loved ones to remain connected with sufferers and to show compassion even when conversation dwindles and recognition fails. She emphasizes that memories of emotions far outlast memories of detail and declarative fact, and the hugs, the strokes on the cheek, and the handholds we offer have lasting influence.
The hugs, the strokes on the cheek, and the handholds we offer have lasting influence.
Most of all, Martin points to assurance in Christ, which no protein tangles in the brain can wrench away (Rom. 8:38–39). “Despite the confusions and muddles associated with Alzheimer’s, Kathleen remained certain that death was not the end of her story,” Martin writes (161). “I know that she was secure in the fact that she was supremely and completely loved by Jesus. . . . Kathleen knew that in every trial there is an underpinning joy. That joy is the grace of Jesus that gives all who trust in Him the promise of eternal life” (202).
Alzheimer’s steadily erodes memory, language, and reasoning. Yet the underlying joy—the joy in the grace of Christ—remains, whatever diseases afflict us. In Memorable Loss, Martin reminds us that even as we forget time, place, and past, Christ remembers us. Even as our memories fade, we’re loved, and we belong to him.
This is a beautiful book that will encourage readers, especially those dealing with the effects of dementia.
