I have just read Frank Bruni’s column “Confronting an Ugly Killer: Alzheimer’s, Awareness and ‘Still Alice.’” The “Still Alice” he refers to, as many readers will know, is the soon-to-be-released movie in which Julianne Moore is receiving praise for her portrayal of a professor combatting early-onset Alzheimer’s. Bruni also notes that the film is based on a novel by Lisa Genova (who is a neuroscientist). The columnist also mentions two additional novels dealing with Alzheimer’s: The Story of Forgetting (2008) by Stefan Merrill Block, and We Are Not Ourselves (2014) by Matthew Thomas. These two novelists have also authored recent relevant essays: Block’s “A Place Beyond Words: The Literature of Alzheimer’s,” and Thomas’s “When Will I Die? How I Decided Whether to Test for Early-Onset Alzheimer’s.” Although Thomas’s novel has received greater acclaim—Block calls it “the greatest Alzheimer’s novel yet”—Block’s essay is the more relevant here.
Like Block, whose grandmother (“Nana”) suffered from Alzheimer’s, and Thomas, whose father did, I have had some experience with the dreaded disease. At least I think I have, for my mother had some form of extreme dementia, probably Alzheimer’s. She lived in Cincinnati, and I had two sisters still living there who were her primary caregivers—with my wife and children, I lived hundreds of mile away in another state. For the last few years of her life, when my sisters no longer believed she could safely live alone in the house we all grew up in, she was in a facility where she could receive appropriate care that became more intense as her condition worsened. Once when I visited mom in her new surroundings she thought I was my brother, who is five years younger and four inches taller.
This was all about two decades ago, and I mention it because, unlike increasing numbers of people, I have not had to experience the hell of regularly watching a loved one deteriorate until he/she finally breathes no more. But because of mom I have taken more than a casual interest in the disease, have done some reading about it, and share the growing alarm at the increasing number of people predicted to be affected by it if we do not come up with better preventative and palliative solutions for dealing with it.
At various points in my life I have tried to imagine what it must be like to be other than I am: old when I was young, black when I am white, female when I am male, and Russian while I am American. It is a difficult thing to do, and how well I have succeeded, or whether I have succeeded at all, can be judged by the essays and/or books I have written—on old age, on racism, on women (like Dorothy Day), and on various aspects of Russian history and culture. Now, I wonder what it must feel like to have Alzheimer’s.
In a previous essay on literature I wrote that it can teach us empathy and quoted President Obama’s words in his pre-presidential The Audacity of Hope (2006), where he wrote that it was important “to stand in somebody else's shoes and see through their eyes.” In other essays on writers such as Alice Childress, Alice Munro, Edith Pearlman, Marge Piercy, W. H. Auden, Wendell Berry, Anton Chekhov, Carl Sandburg, and Mario Vargas Llosa, I have often commented on their empathy and remarked on how it is reflected in their works
Decades before any of these essays appeared, I wrote an earlier one in a work entitled Humanistic Perspectives on Aging(published by the Institute of Gerontology, University of Michigan-Wayne State University). In that essay I argued that literature offered great insights into aging and old age, and today I would make the same claim regarding Alzheimer’s, a disease that afflicts mainly, but not exclusively, the elderly.
In Block’s essay mentioned above, he writes that “the full, internal experience of Alzheimer’s is an account that fiction alone can deliver,” that it asks “urgent questions that only fiction can answer: What do those late stages feel like? What is it like to lose oneself and still live?” While he knows that some people in the early stages of the disease can still effectively communicate to us what is going on inside them, this is not true in the “late stages.” He mentions Thomas DeBaggio’s Losing My Mind: An Intimate Look at Life with Alzheimer’s (2002), but the author is only describing the early stages after he became, as he wrote, “a new member in the parade of horror created by Alzheimer's”—Richard Taylor’s Alzheimer's from the Inside Out(2006) is a similar attempt of a man trying to describe his own early battles with the disease. Thus, as Block writes, “it’s no surprise” that caretakers are increasingly realizing the importance of literature for understanding what Alzheimer's patients are experiencing.
From all I have read on Alzheimer's, the burden on caregivers can be overwhelming.
Besides commenting on the insights of Thomas’s We Are Not Ourselves and several other novels, Block summarizes a short story, “The Bear Came Over the Mountain,” by a master of the genre, Alice Munro. Those unfamiliar with the story might remember the film that it inspired, Away From Her, in which Julie Christie plays an elderly woman (Fiona) struck by Alzheimer's. As in the Munro story, her husband (Grant) observes on his visits to her in a nursing home that she apparently no longer recognizes him as her husband and develops an attachment to another man (Aubrey). As in another film, Amour we experience in the Munro story and Christie film two long-married people coping with the devastating illness of the wife—only in Amour the illness was not Alzheimer's.
From all I have read on Alzheimer's, the burden on caregivers can be overwhelming. As Block writes about fellow-novelist Thomas, he “understands how the numbing, repetitive minutiae of caretaking are often freighted with unspeakable pain.” There are not only the many daily tasks of primary caretakers, often spouses or children, but the overwhelming puzzlement of how best to react to a loved one, whether a spouse, parent, or someone else.
Block writes that his mother told him that she discovered in relating to Nana, “I had to learn how to enter into her world. I had to laugh with her, live in the now, stop looking for the lost person.” After his mother did this he remembers “many happy days” the three of them had together. He adds: “Alzheimer’s, my family came to understand, was a transformative event, one that required us to acknowledge the new needs of a rapidly changing self. This painful awareness is at the heart of the truest Alzheimer’s fiction.”
What Block’s family had to do was try to put themselves in Nana’s position, to imagine what was going on inside her. It is a task that literature does so well—as Things Fall Apart (1959) helps us to understand what it might have been like to be an African victim of Western imperialism around 1900; Doctor Zhivago (1957) to be a Russian caught up in revolutionary turmoil of the early twentieth century; The Grapes of Wrath (1939) to be a poor migrant fleeing the Oklahoma Dust Bowl of the 1930s; or The Invisible Man (1952) to be black when segregation and widespread discrimination were still prevalent.
I'd made all our interactions about me—me being annoyed by the beeping, me getting mad when she wouldn't take a shower, me trying to tell her she just ate when she said, “I'm hungry." I thought I understood her confusion and was changing my life to deal with the effects of Alzheimer's. But it was all still about me. My mother was only going to change as the disease did. It dawned on me: What had to change was me—my reactions, my actions, my words, my emotions.
He finally concluded, however, that he had to enter her world—“Alzheimer's World," as he came to call it. He then listed “some of the tips” he wished he had discovered earlier: “Use the local transportation. . . . Speak the local language. . . . Follow the local pace. . . . Never forget you're in a new place.”
If good Alzheimer's caregiving necessitates empathy, and plenty of it, love stretches it to its uttermost boundary.
In a review of Amour I referred to it as a love story and quoted Dorothy Day’s words that “the only important thing is love, and that we will be judged on love—to keep on loving, and showing that love, and expressing that love, over and over, whether we feel it or not, seventy times seven, to mothers-in-law, to husbands, to children—and to be oblivious of insult, or hurt, or injury—not to see them, not to hear them. It is a hard, hard doctrine.”
If good Alzheimer's caregiving necessitates empathy, and plenty of it, love stretches it to its uttermost boundary. And this type of love is indeed “a hard, hard doctrine.” As Block writes about the end of Munro’s story: “Rather than try to repair his wife’s memory or reconnect her to her past, Grant finds a way to relate to the new, altered Fiona: he works to facilitate her relationship with Aubrey. Grant loses Fiona as his romantic partner, but his love for her, though it changes, remains unbroken.”
A New York Times review of We Are Not Ourselves states: “This is one of the frankest novels ever written about love between a caregiver and a person with a degenerative disease. . . . Mr. Thomas spares nothing and still makes it clear how deeply in love these soul mates are.”
Thus, as difficult as this caregiving may be, it provides an opportunity to practice great love, and that should be stressed more often. In my review of Amour I quoted Tennyson’s words in his poem “Ulysses”:
Free hearts, free foreheads—you and I are old;
Old age hath yet his honour and his toil;
Death closes all: but something ere the end,
Some work of noble note, may yet be done. . . .
Caring for one in the late stages of Alzheimer’s is certainly a “work of noble note.” We all seek love in this world, but as the poet Auden once wrote “If equal affection cannot be / Let the more loving one be me.” In Munro’s story, Grant tries to practice this sentiment.
As much as I admire Dorothy Day for her writings about peace, compassion, and other subjects—for decades she wrote a regular column in The Catholic Worker, as well as other works including a novel—it is her constant love and care for the poor at her Catholic Worker Hospitality Houses that is most admirable (see here for a description of her life among dirt, vermin, “the sight of bodily excretions, diseased limbs, eyes, noses, mouths,” and much more).
But how about the loved one being cared for? Toward the end of considering Thomas’s novel, Block recalls the son of the father stricken with Alzheimer’s reassuring himself “with thoughts of the sensual joys that even Alzheimer’s can’t claim, pleasures that lie outside of selfhood.” And Block himself concludes that “this might be poor compensation, but it is one that I, too, try to believe in. Who knows? Perhaps, after the horror of memory loss passes, there might really be some relief in relinquishing your self and returning to the endless present in which an infant lives. Perhaps late-stage Alzheimer’s is simply unimaginable to those not afflicted with it.”
I realize that it is much easier to see some glimmers of light when one is not burdened with the heavy tasks of caring for someone in the late stages of Alzheimer’s. And in no way do I wish to minimize the great sufferings caused by this dreaded disease; or the urgent need for more research, imagination, and creativity in dealing with it; or the value of the great work performed by organizations like the Alzheimer's Association. But if we conclude, as I do, that nothing is more important in life than love, then Alzheimer’s cannot rob caregivers of our most essential human quality; it can even heighten it.