[dc]“A[/dc]lzheimer’s is a 21st-century civil rights issue.” So declared Dan Gasby, husband of African- American model, actress, businesswoman, and author B. Smith, who has Alzheimer's. He went on to state that “two out of three people with Alzheimer’s disease are women. Blacks are two to three times more likely to have Alzheimer’s. … And it drives people into poverty, in many cases taking away the gains that a sizable and growing portion of people in the African-American community have made.” (See also here on African-Americans and Alzheimer's.) It also strikes Hispanics more than whites, and poor people more than richer ones. Thus, the disease is one that should concern progressives, and here at the LA Progressive, dealing compassionately with Alzheimer's and regarding it as an important issue has an honorable history—see, for example, publisher Sharon Kyle's “The Elderly, Poverty, Alzheimers—And Me!”
In previous essays I have often commented on the insights we can gain from good literature. And in my only previous essay on Alzheimer’s I mentioned Matthew Thomas's We Are Not Ourselves: A Novel, which another writer called “the greatest Alzheimer’s novel yet.” Now I have finally got around to reading the book and will here share what I’ve learned from it. Although it is about a middle class white family, and race and income affect who gets Alzheimer's and how it is dealt with, there is still a commonality about its symptoms, effects, and how families can best deal with it.
Reading We Are Not Ourselves, I experienced some of the same feelings I have when seeing or reading one of Chekhov’s great works, like his plays Uncle Vanya and The Seagull.
The novel is based on Thomas’s own experiences. About the time he was entering college in the early 1990s, his father was diagnosed with early-onset Alzheimer’s and died almost a decade later in 2002 at age 63. Not long after his father’s death, he began writing this book, which he labored over for another decade. Its 620 pages range from the childhood of Eileen Tumulty (born 1941), modelled to some extent on Thomas’s own mother, to 2011, by which time son Connell (born 1977) has matured, married, and become a high school teacher, much as Thomas himself had during the years he wrote this novel.
Although the book’s three main characters—Eileen, her husband Ed, and their son Connell—bear many resemblances to Thomas and his own parents, he is a creative writer dedicated to his craft and therefore his book is a work of fiction, with all the artistic liberties the term implies, and not an autobiography.
Other reviewers have commented on the literary skills displayed by Thomas, and he is indeed a talented writer. I found his fictional characters interesting, his descriptions (primarily in and around New York City, with all its ethnic variety) well done, and the story that he spins so engrossing that I sped through its pages. But leaving it to other reviewers to elaborate on the book’s artistic qualities, let’s now turn to the Alzheimer’s world it depicts.
The first fifty pages are about Eileen and her family before she meets Ed. The next seventy pages or so relate their life together up until 1991, when Ed (barely 51 years old) begins to show the first signs of Alzheimer’s, although it will not be diagnosed immediately. Ed teaches biology at Bronx Community College. Eileen is nursing director at a local hospital. And Connell, a Mets fan like his father, undergoes the turmoil of a youth sometimes being picked on by tougher boys. The central part of the novel, more than two-thirds of it, deals with the years from 1991 to 1996, the year when Eileen, no longer able to cope with Ed at home, puts him in a nursing home. The few remaining years of his life, from 1997 until March 1999, are covered in about twenty pages, and then another fifty or so, including the Epilogue set in 2011, deal with Eileen and Connell and their adjustments to life after Ed’s death.
Before taking up specific Alzheimer’s issues a few general comments are in order. First, there is the problem of depicting what an Alzheimer’s sufferer is going through internally, especially in the latter stages of the disease. Secondly, is the question of how family members can best relate to the stricken loved one. And third is the matter of the wide variation in how individuals relate to their own Alzheimer’s.
Despite all the scientific study of the disease, it is still extremely difficult for most family members to know what their afflicted loved one is thinking and feeling and how this affects her—let’s use the feminine pronoun since more women are struck with Alzheimer’s than men. (See my previous Alzheimer’s essay for references to a few autobiographical accounts by early Alzheimer’s sufferers). For a family member to remain mindful of all the implications of short-term memory loss, for example, is by itself a herculean task. So many of our everyday functions are dependent upon such memory, and we are so used to taking it for granted, that when Alzheimer’s eventually wipes out that capability in another, our imagination fails to grasp fully the mindset that remains.
Despite all of Thomas’s imaginative skills, in the middle and later stages of Ed’s affliction we see him mainly from the outside through the eyes of Eileen or Connell. Exactly what is going on inside his own mind remains a mystery to them—and to us. At the end of the book, and also online, there is an interview with Thomas in which he mentions Ralph Ellison’s great novel Invisible Man as one which influenced his writing. But Ellison starts his book with the line, “I am an invisible man,” and then relates his own story. After Alzheimer’s strikes Ed he cannot communicate how he experienced the next eight years or so (before his death in March 1999). The closest he comes to revealing himself comes early on in his Alzheimer’s when he writes a wonderful letter to Connell in 1992, which he discovers a year after Ed’s death.
It is in this letter that he tells his son, “You are not in this life to count up victories and defeats. You are in it to love and be loved.” In the Epilogue, Connell is lecturing about Kafka’s story “Metamorphosis,” and he writes a single word on the board, “Empathy.” Five pages later, Thomas writes about Connell, “He had watched his father come apart before his eyes. Empathy. He hadn’t always had it. It was a muscle you had to develop and then keep conditioned. Sometimes he thought his real goal wasn’t to teach them [his students] to write better essays but to get them to think more about what it meant to be human.” Although Thomas never directly states how family members can best relate to their loved Alzheimer’s sufferer, he strongly suggests that is mainly with love and empathy.
In an interview Thomas says “I hoped to love the characters all the time while never stinting on presenting them in the full complexity of their humanity.” He understands, as Alexander Pope wrote, “to err is human.” Like the rest of us, Eileen and Connell, as Connell later fully realizes about himself, were not always as loving and empathetic toward the Alzheimer’s-stricken Ed as they could have been. Many of Connell’s failings are understandable because of his youth. Eileen is more consistently loving, but even she has her weaker moments, and empathy is even harder for her than love, partly because of the difficulty of knowing what’s going on inside Ed.
Our third consideration, the individual variations in Alzheimer’s responses, is also important to remember. The old police TV drama “The Naked City,” set in New York, used to end each episode with these words, “There are eight million stories in the naked city. This has been one of them.” In a similar manner, each Alzheimer’s story is unique. No two individuals respond exactly the same. The disease intermingles with each person’s unique individuality. Guidebooks and advice from others can help caregivers only so much. This is one reason empathy is so important. A loving caregiver should always be seeking to understand, as difficult as it is, what the loved one is feeling and thinking.
When Ed first begins showing Alzheimer’s symptoms, Eileen is not as empathetic as she could be. She is fixated on looking at new houses. Even though Ed is reluctant to move, she convinces herself that a move to a nicer house and neighborhood would be good for the whole family. She thinks he is only experiencing “a midlife crisis.” She is not as sensitive to his difficulties as she should be. When he complains of her wheeling in a small TV into the room where he is trying to do some research work and says, “Get it out of here! I can’t concentrate,” she responds: “You’ve been a complete jerk for I don’t know how long. I’ve had it. I can’t take another day of it. Either you stop this behavior right now, or I swear, Ed, I’m leaving. I won’t make a big production of it. I’ll just take our son and go. Do you have any idea how tired I am? How long my day [at the hospital] was?” Only later, after Ed is diagnosed and she reads up on Alzheimer’s does she realize that “familiar settings and people . . . could have a prophylactic effect on memory loss.” She then “thought of how strenuously Ed had fought leaving Jackson Heights. Had she exposed him to harm in moving him to Bronxville? A guilty feeling took root in her thoughts and blossomed into panic.”
Connell is even less empathetic. Even though he knows his father has Alzheimer’s he throws a temper tantrum after Ed uses some of his cologne:
Connell marched downstairs with the bottle. “Did you do this?” he asked, thrusting it under his nose. “Did you take this? There was more than half a bottle in here.” “I don’t know,” his father said, looking scared. “I don’t know.” This time he didn’t soften it for him. “I get it,” he said. “You don’t know. Well, you used it. I know it’s just a bottle of cologne. But it was special to me.” His father’s eyes widened; his forehead wrinkled; his mouth turned down. He sat back in the couch. “I’m sorry,” he said. “I don’t know. I don’t know. I’m sorry.” Part of Connell wanted to say it was no big deal, but he couldn’t somehow.
Although Ellaine wished to tell Connell about the diagnosis soon after she and Ed had heard it, Ed resisted for a while before finally relenting. The puzzlement before discovering what is causing different behavior and then the decision after the diagnosis about whom to tell about it are two early issues that Alzheimer’s families have to face. Another issue that Thomas deals with skillfully is the varying reactions of friends to Ed’s condition, both before and after they receive news of the diagnosis.
A special problem with early-onset Alzheimer’s is that Ed is still working, and he and Eileen have not yet saved enough for retirement. Ed has to face all the difficulties of teaching at a community college, like giving lectures and figuring out grades, while he is losing his memory. Eileen has to continue working and somehow see that Ed is increasingly cared for while she continues full-time work. At first, she relies on home-care nurses, “going through three [unsatisfactory] nurses in four months,” and subsequently on Connell, who returns after about a year away in college. But after his negligence contributes to a home accident his father has, Connell tells his mom, “I don’t think I can do it [take care of Ed while Eileen is gone]. I thought I could do it. But I can’t. It’s too hard for me. It’s too much.” Thus, Eileen finally hires a Russian émigré, Sergei, to whom she pays $900 per week.
Although Sergei is good to Ed, he cannot stop his decline. Before and after Sergei appears on the scene, Thomas chronicles the deterioration that is often painful to read, for example: “His [Connell’s] father was whimpering as he kept his hand on his backside, trying to hold the stuff in place. In the struggle, some crap soaked through his pants. Connell maneuvered him upstairs somehow and into the shower.” Several times police become involved. Once Ed refuses to leave a store with Eileen and repeatedly yells, “Police!” On another occasion she is called to the police station, where an officer tells her, “Your husband was wandering back and forth in traffic in front of the church. He was stopping cars, waving his arms. Cars were backed up all the way to the train station. When we approached him, he was wild.” Caretakers’ fear of such “wandering” and subsequent bizarre behavior is not unusual.
Ed also loses “faith in the physical properties of things. On the way up the stairs . . . [one] night, he stopped on every step. She [Eileen] had to follow closely behind him and tap a leg to indicate which one was next, then lift it for him. He was frantic when his foot was in the air. They proceeded at a glacial pace . . . . This was one of those moments— they had been coming more frequently lately—when she wished Sergei didn’t go home on the weekends. By the time they reached the top, they were both exhausted. She steered him into the bathroom, where she undressed him.”
By the time she got him washed up and into the bedroom, she “saw that it had been two hours since they’d started up the stairs. It felt like an augury: his brain was freezing up. Their time left together in the house seemed precariously little.”
The next day Eileen leaves Ed with Connell while she goes out to visit a friend in the hospital. Connell, however, leaves Ed asleep in his bed and goes into “the city to meet some friends.” But when Eileen “walked in that night, she found all the lights out except for a cabinet lamp in the kitchen, and Ed lying on the cold bricks of the vestibule. She cursed herself as much as she did Connell, because she’d had a strange intimation of disaster when she’d left. She knew she couldn’t trust him, and she’d left Ed with him anyway.”
After an ambulance arrives and Ed is taken to a hospital, he goes “wild” in the ER “screaming, flailing his arms and striking one of the orderlies. They used restraints to tie him down. ‘Why?’ he kept asking. ‘Why? Why?’”
Several days later, Eileen has Ed transferred to a nursing home. The cost: “Three years up front, factoring in planned increases every six months, was over $ 225,000. She would drain her cash reserves to zero and still not even be a tenth of the way there. She’d have to cash out the retirement accounts, because they’d already taken out a home equity loan to pay for Connell’s tuition.”
The first times she comes to see Ed in the nursing home, we have this exchange:
“I know you don’t want to be here,” she said.
“No.” He shook his head. “No, no, no, no. No.”
“I’m here. I’m going to be here. I’m going to be here every day.”
There was a confused sadness in his expression, a struggle to convey what he was feeling.
“I couldn’t take good enough care of you at home,” she said, swallowing hard. “I couldn’t keep you safe.”
He fell quiet. She was finding it hard to keep herself together. She was determined to get through this without breaking down.
“No,” he said.
Eileen did go to see him “every day,” but she still felt guilty. “She never accepted the invitations for weekends in the country or at the beach. Her friends said she was being too hard on herself. She thought she was being too easy. I could bring him home, she wanted to say. I could take care of him. They told her she needed to have some semblance of a life, that it was too much. And she thought, It’s not enough.”
After a few years of such visits, Eileen sees “the end coming. His color was ashen, his breath sulfuric. His gaze was vacant, without any bouts of clarity. His head was stuck in a permanent loll, as if the muscles in his neck had stopped working. The clonic twitches almost flung him out of his seat.”
When Ed dies, on 7 March 1999, “it was pneumonia that killed him. As the brain had deteriorated, the body parts had stopped working. His lungs filled with mucus. He drowned in it.” As indicated above, the novel does not end with Ed’s death. Eight short chapters (out of 101 total) and an Epilogue remain in which Eileen and Connell struggle to fully comprehend Ed’s life and suffering, how they related to him, and how to continue living without him.
In many ways, the novel is a sad story, but one full or humanity, one that reminds us that life can be full of sorrow as well as of happiness, of failures as well as triumphs. We often cannot prevent tragedies from occurring to us, but we can control how much we try to empathize and love. Reading of Eileen’s heroic attempts to love and care for Ed—unfortunately, Ed’s disease prevents us from fully comprehending what inner turmoil he is undergoing—we understand why Dorothy Day once wrote that love “is a hard, hard doctrine.”
Reading We Are Not Ourselves, I experienced some of the same feelings I have when seeing or reading one of Chekhov’s great works, like his plays Uncle Vanya and The Seagull. Life can be sad, but Chekhov insists we can confront it with love and nobility. There is still one other tool we can utilize, as Chekhov (who died at age 44 of tuberculosis) often did as he confronted the tragedies of life—humor. In a long essay on Chekhov, I quote a few insights about it from other writers. Theologian Reinhold Niebuhr: “To meet the disappointments and frustrations of life, the irrationalities and contingencies with laughter, is a high form of wisdom.” Writer Roger Shattuck: “Humor offers both a form of wisdom and a means of survival in a threatening world. It demands that we reckon with the realities of human nature and the world without falling into grimness and despair.” And Shakespeare, “And frame your mind to mirth and merriment, / Which bars a thousand harms and lengthens life.”
We Are Not Ourselves does not mix humor in with tragedy nearly as much as do some of Chekhov’s great works. But Thomas is still younger than Chekhov when he died so early, and we can still learn much about life—and Alzheimer’s—by reading his wonderful debut novel.
Walter G. Moss