How dementia is changing me: My battle with an ever-shifting identity

Two years ago, the writer and academic Gerda Saunders was diagnosed with microvascular disease, a leading cause of dementia. Here, she describes the most formidable issue she faces: her ever-shifting identity

For my 61st birthday, in 2010, I was given the diagnosis of microvascular disease, after Alzheimer’s, the second leading cause of dementia.

I was – as my rather blunt neurologist put it – already “dementing”. Insofar as I had thought about dementia until then, I was unaware that the word had a verb form: he/she/it dements, they dement, we all dement. Yet, no matter, I was incredulous that this absurd verb could apply to me. Now, two years later, “the cloake sitteth no lesse fit” on my chastened back.

My initial denial will seem disingenuous in light of the fact that I knew the symptoms of dementia even then – and recognised 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 82. Given that, together with the generally known fact that dementia can run in families, why did my doctor’s utterance fall so disconsonantly on my ear?

My belated pursuit of a PhD in English in my 40s introduced me to the Enlightenment philosophers. I remember being intrigued by John Locke and William Whewell’s pursuit of, as Locke puts it, the “originals from whence all our ideas take their beginnings”, a quest that 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, is one to do when an acquaintance stops by your house carrying her own beverage? How does one 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 private backyard or displaying baby pictures of your kids naked regarded by visitors as tantamount to sexual exploitation?

Yet, by my mid-50s, 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. 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 60s, I had begun again to feel like an alien of sorts, a stranger even to myself.

I first noted a troublesome forgetting in my work as the associate director of gender studies at the University of Utah, a position I took at age 50 after a foray into the corporate world. Like the spoiler snake of the Bible, 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.

After less than five years in my dream job, forebodings that not all was well started to becloud my class time: sometimes, I would lose the thread of a discussion, 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 not distributed notes or an assignment I had announced.

Even the preparation of elaborate scripts did not prevent me from losing my place in my own mnemonic system. Though I had not yet sought a diagnosis at that time, I took our programme 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, I was not teaching at all. Would I have made the switch from business to the university if I had known that I would once again be bogged down in management and meetings?

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, etc. Some time between the welcome and the review of previous themes, my mind flipped into confusion. Someone was talking. His voice was distant, and syllables flowed 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 that we had already gone around the table.

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. I asked Peter to come along for my doctor’s appointment. Our primary care doctor politely entertained our doubts about the value of diagnosis, and let us stew our own way into following her suggestion that I have an MRI. The scan results showed “white matter lesions” – an indication of clogged microvessels that prevent blood from reaching nearby brain areas. Dr Eborn confirmed the internet wisdom that microvascular dementia might benefit from cholesterol- and blood pressure-lowering medications to retard the clogging. However, a neurologist would first have to confirm a connection between my memory problems and the lesions.

One neurologist, one neuropsychologist, dozens of tests, and many hundreds of dollars later, my neurologist delivered the D-word. Given how early I noticed my symptoms, 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.

Dementia is a catch-all term for various disabling problems with memory and thinking. Although the end results are very much alike no matter the cause of a particular dementia, diagnosing a cause helps establish a timeline and whether any medications are available to slow the progression.

The Alzheimer’s Association defines 13 different types. Alzheimer’s, which for most people is synonymous with dementia, is the most common. It is caused by deposition in the brain of plaques (misfolded amyloid protein) and the presence of tangles (an abnormal number of protein tubes). There are no biological tests yet to definitively diagnose Alzheimer’s in a living person; plaques and tangles are found in the brain only at autopsy. A clinical diagnosis is made by excluding other forms of dementia and rating the patient on two different scales, one that measures cognitive decline, the other functional decline.

Vascular dementia, which I have, results from the blockage of blood vessels in the brain, which can be detected on an MRI as lesions. These blockages eventually lead to repeated strokes. Some strokes cause immediately evident damage, but others are “silent” and not noticed by the patient or her caretakers when they happen.

Despite the different origins of Alzheimer’s and vascular dementia, their outcomes are similar enough to be assessed by the same two seven-stage scales: 1) the Global Deterioration Scale for Assessment of Primary Degenerative Dementia, or GDS; and 2) the Functional Assessment Staging Tool, or FAST. Both are widely used in the medical and psychiatric community. The GDS targets the level of damage in memory and thinking; FAST assesses an individual’s functioning and everyday self-care activities. Each scale ranges from stage 1, in which no cognitive deficits or odd behaviour are noticed by either the patient or her loved ones, to stage 7, in which very severe cognitive and functional decline are evident. Stage 7, also known as late-stage dementia, is characterised by the deterioration of the patient’s speaking ability to about a half-dozen intelligible words, combined with progressive loss of the ability to walk, sit up, smile, and hold up her head. Thus, any particular person’s dementia falls somewhere between mild impairment and Bedlam-style madness.

But one’s dementia does not lie where it falls. As sufferers of dementia (and their caretakers) soon discover, medical professionals’ use of the present continuous form of the verb “to dement” is highly significant. Even stage 7 patients are always still dementing, never done. Until they die.

After my retirement on 1 August 2011, I needed almost six months to feel ready for what I had looked forward to for most of my working life: preparing an almost-done novel for publication and completing a second one, into which I had already poured years of time and research. However, my last years at Gender Studies had left me fearful that I might not be able to edit a 300-page novel and resume another; at work, writing had come to drain my mental energy to the point where I had none left for my family or home life.

Just about every aspect of my university job had involved writing. The programme emails, office circulars, meeting reports, letters of recommendation, and other official letters had been quite doable just about up to the time of my retirement – they were relatively short, self-contained pieces. However, longer, research-based documents – which I used to love – had become very, very difficult.

As fate would have it, a major responsibility during my 62nd year would be just such a piece of writing: a policy and procedures document creating a new position in our program. The document had to be written in the legal language and style of the university’s Policy and Procedures Manual; it had to include references to applicable university rules; and it had to align with the goals and practices of the various colleges and departments with which our programme jointly appointed faculty. Given that this manual runs to hundreds of pages and that my short-term memory already seemed to barely function, I had to contend with the fact that a mere switch between screens erased from my mind the item I was researching.

Accordingly, I wrote down, in longhand, what information I needed before switching screens. Once I had electronically copied the answer, I used the same process in reverse, jotting down keywords so that I would know what to do with the information once I got back to the draft screen. And so on for the bulk of the academic year. Work, for me, had become unconscionably time-consuming and stress-provoking.

After thinking about my retirement writing projects for a month or two, I decided against revising my books-in-progress. I instead started writing an essay about the changes with which I am struggling as the result of my dementia developing. Then I wrote more. Could I possibly keep writing well enough and long enough for the accumulating essays to become the chapters of a book?

In time, my better-than-expected (albeit painfully slow) progress on my book about dementia – from which this essay is derived – became its own puzzle. Looking back at the chapters I’ve completed, I ask myself, “How come I can still write? Could I be faking dementia?” Since the indignities accumulating in my ADLs, as well as conversation-inhibiting lacunae in my speech, are classic markers of early dementia, the discrepancy between those failures and my preserved writing ability must be part of my story, too.

But I found that I am not the only person who appears to be “faking”. For example, a counsellor friend tells of a retired philosophy professor who can no longer bathe, dress, or feed himself, but directs canonical philosophy discussions. A sprinkling of peer-reviewed neurological research, too, reports the “unexpected preservation of a cognitive function in individuals with dementia”: in the neurology journal Brain, for example, researchers Julia Hailstone and Rohani Omar present the case of a 64-year-old harpsichordist with a non-Alzheimer’s dementia who “had virtually no comprehension of oral or written language”, “was mute” and did not understand the functions “of objects such as a corkscrew and a tuning fork”, but nevertheless demonstrated “the motor skills required in playing [his] instrument”, “the visuoperceptual skills required to read scores”, and “the cognitive skills involved in interpreting symbolic notation”.

So, it seems that dementia can sometimes go like this: persons having spent a lifetime mastering knowledge structures and intellectual skills may retain access to this expertise even after becoming utterly dependent on others in living their lives. I want to believe this will be my story, too. But in truth, writing is getting slower and harder: my essay took months to create; the four chapters in my book project from which it originates took two years of many eight-hour days, reams of notes for switching computer screens, endless thesaurus-mining to pry almost-there words from the tip of my tongue, and the tough-love edits of writer friends Shen Christenson and Kirstin Scott.

As I completed each chapter, I made it confidentially available to friends and family as a means of updating them about my health and state of mind. Many recipients asked if they could pass the chapters on to people in their circle who were in some way affected by dementia. My readers’ feedback brimmed with compassion, but also, to my surprise, gratitude. Hearing about the disease from the perspective of someone who actually has it added a voice they had not found in other stories about dementia, namely those told by the caretakers of sufferers much further along the scale of diminishment. A peek into my experience, they said, helped diminish the fear and stigma engendered by the disease and additionally gave them insight into the often inexplicable behaviour of the people they love who have dementia.

While these responses encouraged me to complete the book, my frustratingly slow progress reminded me that I might not be able to do so. As an interim measure, therefore, I decided to write a shorter piece that I hoped might reach people beyond my inner circle. The result is this essay, a reshaping of book excerpts related to the most formidable issue I face: my ever-changing identity.

A version of this essay was published by the Georgia Review. To read the full version, go to https://garev.uga.edu/