Before it's too late

Just days before her 61st birthday, Gerda Saunders made a wretched discovery at the neurologist’s office: 'Dement' is a verb. "I dement, you dement, he/she/it dements," Saunders writes in Memory’s Last Breath: Field Notes on My Dementia. It’s an unlovely conjugation if ever there was one. Why is it that disorders of the body so often involve disfigurements of language as well?

Even before that day, Saunders knew her memory was deserting her. In conversation with colleagues, she’d lose her bearings midsentence. (Before retiring, she was the associate director of the gender studies programme at the University of Utah.) She’d misplace the names of books and authors she knew by heart. Once, at an important meeting, she asked all of the participants to go around the table and introduce themselves. They’d already done so.

So she went to the doctor, described her symptoms, wedged herself inside an MRI machine. Her scans revealed "white matter lesions," or stoppered microvessels that were compromising the flow of blood in her brain. A neurologist told her she'd need two more evaluations at two-year intervals before she could be given a definitive diagnosis of dementia.

"But in my heart," Saunders writes, "I already knew: I am dementing. I am dementing. I am dementing."

She learned she had microvascular disease. Apart from Alzheimer's, it's the greediest thief of memory there is. It turns out that there's more than one way to dement.

Saunders's memoir is an attempt to declare herself before her mind wastes away — and to analyse her dementia as dispassionately as possible, in the cool manner that a herpetologist might a snake. The first two chapters are melodious. The last chapter is stunning in both senses of the word, gorgeous and shocking. The chapters in the middle, while always engagingly philosophical, sometimes get bogged down in the past, and while I enjoyed some of the stories Saunders tells about her unusual upbringing, I kept scanning the shoreline for barges bringing news of her present condition.

Then again, I can see why she might have felt compelled to tell her story in full. If this book is her final stand, wouldn’t she want to get her imperfectly remembered self, in all its pixelated fuzziness, enshrined on the page? If only for the brief reprieve it gives her from her current woes? "The more the world around me confuses me," she writes, "the better it feels to escape."

Memory's Last Breath began as an article in the winter 2013 issue of The Georgia Review, later republished in Slate. Writing a whole book nearly took the stuffing out of her. "I sometimes got so lost in the manuscript that I almost gave up," she writes in an author's note.

Saunders's dementia has most significantly corrupted her "working memory," meaning she has trouble hanging onto and processing bits of information in the short term. She forgets that broccoli is boiling on the stove, and wanders outside to water plants; she washes her hair twice in an hour. Her frontal lobe, responsible for planning and reasoning and making judgment calls — all the things we associate with rational, dignified adult functioning — is marbled with lesions. It's an internal blueprint for humiliation. She urinates on closed toilet lids, tries on clothes in the middle of a department store. Objects confuse her. At a restaurant, she stares at an upside-down beer stein and cannot make head or tail of it — literally. She mistakes the bottom of the glass for a lid and tries to pry it off.

So what do you do when you slowly become estranged from yourself? When your thoughts start to dissolve into a slurry of gibberish? Particularly if you’ve staked so much of your identity — and so much of your pleasure — on a rigorous life of the mind? Saunders, now 67, has given a good deal of thought to the day that she'll be here and not be here. She's both adaptable and spirited enough to know there's more to a good life than intellectual pursuits alone. The question, as she puts it, is when she will "cross from being alive to the living death of madness — this is, when people will rightly say 'Gerda is no longer Gerda'."

What she goes on to describe is, if you think about it, a perverse variation of Theseus's paradox. What if you started replacing the solid planks of a ship with rotted ones? Is it still the same ship after one plank is replaced? How about half of them? Is there a point when Gerda is no longer Gerda? She asks family and friends to consider these questions, among others, as her mind deteriorates: has dread replaced happy anticipation? Does she fear loved ones more than she finds comfort in them? Is she insatiable in her needs? Are her caretakers faltering on the precipice of nervous exhaustion?

Health care professionals and policymakers, who tend to view the mind and the body as two distinct entities, could do worse than to read her list of questions in full. It's an intrepid inventory she takes. And if enough answers to these questions are 'yes', she has an intrepid response, which I’ll leave to readers to discover.

For now, Saunders's awareness of her own mortality has turned her into an omniscient eye. She imagines the whole fate of the universe as it unspools — the sun becoming a black dwarf, the Andromeda Galaxy merging with the Milky Way. How she’ll miss it. "I do not want," she writes, "to go away."