The Disappearing Self An academic's 'field notes' on her own dementia.

Nine months after her diagnosis of early-onset dementia, Gerda Saunders PhD’96 retired from her position as the associate director of the U’s Gender Studies program. As a goodbye present, her colleagues gave her a leather-bound journal. In it, she began jotting down notes about her “daily misadventures.” With a wink at her background in the sciences, she called it Dementia Field Notes. Like an anthropologist, Saunders set out to objectively observe one member of a strange tribe, “the Dementers.” The result of this endeavor eventually led to her 2017 memoir, Memory’s Last Breath. “The more you know, the better you’re able to love,” she writes in the introduction. With that in mind, we offer you an excerpt.

On September 21, 2010, five days before my sixty-first birthday, I was given a diagnosis of microvascular disease. Following Alzheimer’s, microvascular disease is the second leading cause of dementia. I was—as my rather blunt neurologist put it—already “dementing.” Insofar as I had thought about dementia before that day, I was unaware that the word had a verb form: I dement, you dement, he/she/ it dements, they dement, we all dement. Now, six years later, “the cloake sitteth no lesse fit” on my chastened back.

The denial with which I initially met my diagnosis will seem disingenuous in light of the fact that I knew the symptoms of dementia even then—and recognized them in myself. Also, my mother had a form of mental disconnect that made her increasingly out of touch with reality until her death at eighty-two. Given that, why did my doctor’s utterance fall so disconsonantly on my ear? It took me a long time to understand how profoundly the diagnosis threatened my sense of identity.

My pursuit of a PhD in English in my forties introduced me to the Enlightenment philosophers. I remember being intrigued by John Locke’s and William Whewell’s quest for, as Locke puts it, the “originals from whence all our ideas take their beginnings,” which took both men back to Adam’s expulsion from the Garden of Eden. Locke describes fallen Adam as lost in a “strange Country” with “all things new, and unknown about him”; Whewell pictures Adam doing the first work of postlapsarian orientation by giving names “distinct and appropriate to the facts” to newly encountered objects and concepts.

I knew something about this project. Having emigrated in 1984 from South Africa to Salt Lake City with my husband, Peter, and our two children, I had experienced the discombobulation of having to decipher situations that must appear mundane to residents equipped with the requisite cultural vocabulary. What, for example, are you supposed to do when an acquaintance drops by your house with her own beverage in tow? How do two people proceed from acquaintance to friendship without that most crucial foundation of South African hospitality: a fresh pot of tea? Why is letting your kids run naked through the sprinklers in your own backyard or displaying baby pictures of your kids naked regarded by visitors as tantamount to sexual exploitation? What about the forlorn feeling when hosts with whom you have had a marvelous evening say goodbye to you at the door rather than walking you to your car?

By my mid-fifties, I had cracked these and other social codes to a great extent. I knew that having coffee meant heading to the nearest Starbucks. I had built up a scaffolding of friends so dear they had become family. Most of the time I no longer felt like a foreigner. I had developed an American self and was settling into it. But before I had even reached my sixties, I had begun again to feel like an alien of sorts, a stranger even to myself.

I first noted an irksome absentmindedness in my work as the associate director of gender studies at the University of Utah, a position I took at age fifty-two after a foray into the corporate world. Like the troublesome serpent in Genesis, an impairment in my working memory—the ability to maintain and manipulate information “live” in a multistep process, such as remembering to carry the tens when you add numbers—slunk into my intellectual Eden.

Peter and Gerda Saunders at their home in Salt Lake City.

Peter and Gerda Saunders at their home in Salt Lake City.

My love of teaching was the reason I left my corporate job in 2002 for academics, gladly taking a 25 percent salary cut. After fewer than five years in my dream job, forebodings that not all was well started to cloud my class time: I would lose the thread of a discussion or forget the point toward which I had intended to steer the students’ thinking. Often, the name of a novel or author I used to know as well as my children’s names would not come to mind. Not infrequently, a student would remind me during the last moments of class that I had failed to distribute notes or an assignment.

I began to prepare scripts for my lessons, but even these did not prevent me from losing my place in my own mnemonic system. Though I had not yet sought a diagnosis, I took our program director into my confidence about my memory difficulties and she graciously supported me in negotiating smaller teaching loads. Soon there was only one class per year. During my last two years of working at the university I was not teaching at all and was instead bogged down in management and meetings, just like in my corporate days.

On the administrative front, too, my fraying memory caused me stress. During the first gathering of a Women’s Week committee that I chaired, I had created a detailed agenda to keep me on track: welcome, make introductions, review themes covered in past years, brainstorm ideas for this year, and so forth. At some point between the welcome and the review of previous themes, my mind flipped into confusion. Someone was talking. His voice was distant, and syllables owed from his mouth without coalescing into meaning. I panicked. I had no idea where we were in the agenda. Desperately scanning my notes, my eye fell on “Introductions.” When the speaker paused, I suggested we introduce ourselves. As the words left my mouth, I remembered with horror that we had already gone around the table. My insides cramped at the realization that I had committed the cardinal sin of academia: not thinking accurately on my feet. A colleague from the Women’s Resource Center tried to take the edge off my embarrassment by saying that we all had so many things on our plates it was no wonder we sometimes got confused. The nodding heads around the table conveyed empathy, but also confirmed that everyone had noted my loss of face.

And so my downward slide continued. I knew I had to retire.

At home, too, my various slips proliferated. I spoke to my family and closest friends. “Senior moments,” my peers knowingly declared. Even my then-twentysomething children, Marissa and Newton, assured me they, too, experienced similar lapses. As the incidents accumulated, though, my immediate family acknowledged that they noticed a change. As I approached my sixtieth birthday, they agreed that my deficits might be adding up to a diagnosable disease. I started considering making a doctor’s appointment, my mother’s mental unraveling never far from my mind. . . .

My mother’s deterioration had gone without a name. What, then, to do about my own unhinging? Even though much had been learned about dementia in the decade after my mother’s death, all but the most occult sources concurred that there is ultimately no cure for dementia, or any other brain disorder with symptoms adding up to the gradual loss of intellectual function thereby “depriv[ing] sufferers from be[ing] able to think well enough to do normal activities, such as getting dressed or eating,” “the ability to solve problems or control their emotions,” as well as the adroitness to distinguish between things that are real and “things that are not there.”

Despite the lack of anything approaching a “cure,” there are medications thought to slow the progression of Alzheimer’s and other dementias. However, my preliminary research confirmed what Peter and I had learned anecdotally: no existing medications could stave o the inevitable decline that catches up with even the most diligently monitored patient. We were afraid that the quest for diagnosis could trap us in what writer and physician Atul Gawande once described as “the unstoppable momentum of medical treatment.” Still, we are both the kind of people who want to know, always drawn like moths toward enlightenment. Also, confirmation of our suspicions might help us prepare. If the unnamable loomed ahead, we could plan for expensive care, diminished quality of life, and a way to end my life at the right time.

I asked Peter to come along for that initial doctor’s appointment in 2010. Our primary care doctor politely entertained our doubts about the value of diagnosis. She heard out our pontifications about what we regarded as a worthwhile quality of life, and let us stew our own way into following her suggestion that I have an MRI. . . .

One neurologist, one neuropsychologist, dozens of tests, and many hundreds of out-of-pocket dollars later, my neurologist uttered the d-word. She projected that two more neurological evaluations at two-year intervals would be needed before I would officially meet the criteria of dementia.

But in my heart I already knew: I am dementing. I am dementing. I am dementing. . . .

Excerpted from Memory’s Last Breath: Field Notes on My Dementia by Gerda Saunders, published by Hachette Books. Copyright © 2017.

A SELECTION OF FIELD NOTES

2/5/2011 During my going-away meeting with Gender Studies, the faculty gave me this journal. In it I’ll report my descent into the post-cerebral realm for which I am headed. No whimpering, no whining, no despair. Just the facts.

8/24/2011 I could not combine the up and sideways movements of our bathroom tap to make cold water come out. Instead fetched cold water from the kitchen in the plastic jug.

3/3/2012 Saturday at the mall I performed the physical motions of shoplifting — walked out of Macy’s with a pair of pants over my arm. I only noticed when I was inside Dillard’s on the opposite side of the mall. I hurried back, ready to explain. There were no salespeople around, and no one noticed when I put them back.

6/11/2013 Since I started having trouble remembering which items go with what when I pick something to wear for the day, I have started now and then writing down the components of the outfit.

Visit Saunders’ blog at gerdasaunders.com to watch a series of short RadioWest films about her experiences, including a moving video about coping with her wardrobe.

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5 thoughts on “The Disappearing Self

  • I’m so grateful for this article and to this wonderful professor for writing about her dementia. My husband has vascular dementia. His doctor, like hers, said he knew it would be hard for us to know that he is demented, but it was true nonetheless. I’m sure she has many who love her, as I do my husband. Glenn Campbell wrote his song, “I’m Not Going to Miss You”, when he was diagnosed with dementia. Perhaps the not knowing their loved ones is merciful, because it simplifies their lives. Even though my husband doesn’t miss me, I miss him.

  • Thank you for sharing. I have not heard of this book but I’m going to look for it. Many times I have wondered what life is like for someone bwith dementia. Having watched my grandfather go through Alzheimer’s.. I am not keen on aging myself.

  • So sad, sounds like a very nice lady who would be easy to love. I have noticed too a loss of mental skills as I age. I retired at 68 from the nursing profession which demanded polished retrieval skills and immediate assessments. Now, two years after retiring, I find myself searching for specific words, descriptive words, that once were common place in my vocabulary. I believe this is how dementia begins.
    I read books and challenge my mind with trivia questions ,and take turmeric daily to delay symptoms, which I think has helped me. Though it is difficult, I try to find joy in my daily mundane tasks and look forward to the future with a positive attitude.
    I read that Dementia is common in the elderly and with it comes depression and despair. I believe if I try to keep a positive attitude , exercise, eat nutritious food, and continue to challenge my mind by reading, I might be able to slow the process.
    Remember, we are all blessed with family and loved ones who support us no matter what happens. What brings more joy in our lives than our loved ones?
    May we all continue to thrive while we shuffle through the challenges of this mortal life.

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