Us Against Alzheimer's Page 4

  When Gladys announced, “I know that woman,” I felt, in a long-awaited moment of anointing, that I finally knew her and the other women and men in the room with us. I began to feel that I could write this story.

  * * *

  So now I knew I could create and imagine this story, but how would I actually do it? What would that mean, look, and feel like for me and for my characters? Although I consider The Wide Circumference of Love largely a story of how married love and self-love are transformed by a wrenching crisis, it is grounded in the experience of one man, Gregory Tate, experiencing and living with Alzheimer’s disease. The novel opens on the day that Gregory’s wife, Diane, takes him to live in a memory care unit because he has been diagnosed with early-onset Alzheimer’s. It is the story of their thirty-five-year marriage and their prodigal son and dutiful daughter.

  I relied on several “experts,” who read various drafts and helped me accurately portray the disease and how it manifested in the body and mind of those with it, as well as its impact on family members, friends, and caregivers. The experts included the wife of a resident of the memory care unit I spent time at and a social worker on staff at the center as well as a senior health consultant who helped families caring for those with Alzheimer’s disease.

  Although often the actions of those with Alzheimer’s and other dementias appear “crazy,” these individuals have not lost their minds. The writing challenge was to dramatize both the strangeness of actions induced by the diminishment of cognitive abilities and simultaneously capture the ways that what these individuals still possessed bound them to us.

  After reading an early draft in which I was attempting to write from the point of view of Gregory, the staff social worker informed me gently that I still had work to do. “Remember,” she said, “when writing about a person with this disease, nothing that you can imagine is off limits, no matter how odd, incongruous or inexplicable.” My descriptions of Gregory, she told me, were too safe and lacked the edge and tension built into the experience of Alzheimer’s. The kind of tension and edge that for a long time I had feared and that had erected a wall between me and the residents.

  She then told me about the resident who had been a farmer and who often urinated in the potted plants in the hallway because he imagined himself watering his crops and the retired fireman who, each time he heard a loud noise, thought it was a fire alarm and banged on residents’ doors trying to evacuate them from the building.

  Ultimately, I wrote a scene that captured Gregory’s vulnerability, his fear as well as his all-too-natural and recognizable yearning to feel a sense of control. It is a scene early in his acclimation to living in the residence. It is midnight, and he is walking the halls naked. Naked because he is not only stripped of clothing but also of inhibition and the self he once knew, the self he once was. He is naked walking the halls fleeing he knows not what, but searching for a way out of this place and back to himself. He wants to go home, and home is who he used to be. In the midst of a near scuffle with a nursing assistant who wants to guide him back to his room, another resident, a woman who has fallen in love with him, opens her door and offers a sheet to cover his body. As anyone in love would do, she offers protection.

  The writing of that scene was possible because I mined my own generalized, ever-present vulnerabilities and used them as a springboard into the experience of a sixty-nine-year-old former architect with Alzheimer’s. A man who was a father, husband, friend, brother, son, builder, and who remained all those things in the midst of the most massive upheaval he has ever known.

  * * *

  How did I find myself in this place? No one in my family had Alzheimer’s, and it is a topic that I previously had little interest in. Yet writing a novel about Alzheimer’s was as understandable as other topics I had explored in fiction, among them the death of a child and the work and commitment of civil rights activists. I had known very little about either of those subjects before the novels I wrote inspired by them plunged me into a world of imagination that literally possessed me in each case for several years.

  I am drawn to write about what I don’t know, and when I write about what I in theory “know,” I still write to discover what I don’t. There is a word for that: inspiration. But for me a more precise designation is that I have been “called.” Being called means finding answers as well as being swept away by a tidal wave of questions. Questions for my characters and questions for me. Fiction creates imagined lives and invades my own.

  Watching families wrestle and live with the burdens, challenges, and sometimes gifts of Alzheimer’s disease flooded me with questions. Who would care for me? What kind of caregiver would I be? These are not questions answered easily, or only once. And, like many questions, they have more than one answer.

  I set out to write not an Alzheimer’s story but a love story, and I did. Now I know what the individuals who opened their lives to me know: that love, the kind that can withstand the onslaught of this disease and even blossom in its harsh, glaring light, is stubborn, persistent, resilient, impatient, and sometimes confused, and it never walks away.

  FATHER FIGURES

  EVANS D. HOPKINS

  Seven years after my release from prison, I was living a very full life, writing a memoir and caring for my elderly parents, Daniel and Marguerite Hopkins. I would write well into the night, as had become my custom during my years of incarceration. On this summer night, I had the phone ringer off so I could get into the groove. I happened to take a break around 3 a.m., to gauge whether I could push it for another hour, and it was then that I caught a glimpse of the blinking red light on the base unit of my portable phone.

  I checked the message, and it was Anita, my parents’ caregiver, her voice full of alarm.

  “Derrell, you need to come out here quick. Your father has had a stroke or something. Call or come right away.”

  I was into my car in five minutes, glad that I was still up and dressed as I raced beneath the city streetlamps of Danville, Virginia, sixty and seventy miles per hour, then hitting eighty or ninety once I reached the county line. I prayed that Pop was still alive, that this was just an ordinary alarm, something that medicine—and I, psychologically—could handle. Then I thought of the irony of my prayer: how, during such episodes, even the most hardened man will return to his roots, to prayer, as if one’s prayers might influence how the cells and fluids within our aged loved ones’ bodies will react, as if our thoughts might influence their illnesses.

  The scene at the house in rural Pittsylvania County was fraught with alarm, red lights from the volunteer rescue squad’s ambulance and gigantic SUV flashing off the great pines bordering the property. I drove past them onto the lawn, crazily thinking of how I was damaging the grass.

  Upon entering the house, I was met by one of the five attendants, all of them white. “You remember me, don’t you?” one of them said, in his farm-boy drawl, eager that I might recognize him. “Your father lets me hunt out here,” he rambled on, and rather than being irritated, I could not help thinking kindly of the white boy, wanting me to know that he was a good guy, trying to give the extra effort, to show some personal appreciation to the family.

  “I sure do,” I lied, as he led me to the bedroom, where Anita was helping Pop into his jacket. The other attendants hovered over him, and Mama, who had become ever more silent, in the grip of fairly advanced Parkinson’s disease, sat quietly on the opposite side of the bed. “It seems like he’s had a stroke or something,” the lone woman attendant said. The older male who seemed to be in charge took over then, telling me that they weren’t sure if my father was normally as weak and spacey as he seemed, or if this was his normal state.

  “His vital signs seem to be all right, but he doesn’t seem to know where he is,” he said. I noticed right away that Pop’s mouth seemed to be turned down slightly—not a good sign—but I was nearly jubilant with relief that he was sitting up, not stretched out in the throes of a seizure or some other neurological sign of d
istress, as I’d feared. All eyes looked to me for instruction as the head man said, “We don’t really know whether to take him to emergency, or what.”

  “Let’s go ahead and get him in the ambulance, and see what they say at the hospital,” I said, surprising myself at the calmness of my demeanor, my racing heart slowing with the evidence that my father was still alive.

  As I supported my father down the hallway, with an attendant on the other side, my dad began to sob.

  “What’s wrong Daddy?” I asked.

  “I—I won’t ever be coming back here,” he said, then started to tremble. “I’ll n-never see my home again.” Tears began streaming down his cheeks, and his body seemed to sag as he gave utterance to his greatest fear.

  I nearly broke down myself, hearing this semblance of lucidity and understanding come from someplace within my father’s dementia, his tears streaming as he seemed to sag in our arms after giving utterance to a possibility that surely terrified him. The probability that he might well be right tore through to my core, as well.

  “No, Daddy, that’s not true. We’re taking you to the hospital just for some tests, and you’ll be back here tomorrow,” I said to comfort him, though I knew it might not be true. As I helped put my father into the ambulance, his sobbing words began a reverberation in my mind that would continue to haunt me during the coming days.

  I won’t ever see my home again.

  Pop’s words were still in my mind as I sat in vigil beside his hospital bed, after the four hours in the emergency room and conversations with doctors who told me they had found no signs of a stroke, that hopefully Pop was only reacting to a urinary tract infection. “I—I’ll never see my home again, I’ll never see my home again.”

  The words haunted me during the five days of his hospitalization. Pop failed to respond to medication, and a couple of times I had to help nurses restrain his arms as he tried to pull out his IV lines. He often repeated, “I’ve got to go home to see about Marguerite,” or “I’ve got to go home to see about my wife.” I was moved to tears that this man’s first duty, even in the depths of dementia, would still be predicated on the love for his wife.

  The sorrowful scene was embellished tenfold in my writer’s imagination, replaying over and over in my head while I wiped sweat from his fevered brow and the spittle from his mouth as he ranted. He believed he was in a funeral home somewhere up on Route 58, ominously confusing the hospital with the nursing home where his sister Sarah had once been and saying repeatedly that soon his son would be there to take him home, oblivious to the fact that I was there beside him.

  His words were still torturing me—I will never see my home again—as I told the social worker, in the doorway to my father’s room, that she should proceed with preparing the papers for his commitment to a nursing home. In the background Pop, now tied to his bed to restrain him from pulling out the IVs, exclaimed, “I—I’m not worried about being at this funeral home, ’cause Derrell brought me here, and I know he’s coming to pick me up.”

  It seemed as if my worst fears were coming to pass when the social worker told me that the only nursing home with a bed available was the god-awful place his Aunt Sarah had been just before she had died, only two months before.

  I felt an ebb and flow from terror to numbness during the hours spent beside Pop’s bed. On one hand, I had to continue to love the human being lost in delirium who remained my father, while trying to make sure disinterested nurses took proper care of him, as I took care of the little/not-so-little things like putting salve on legs scaled by eczema and washing and treating feet darkened and, to my horror, smelling from an absence of attention given to his condition by his caregivers—doctors, nurses, and home caregivers. Even I felt guilt in not having known about it, not paying enough attention.

  At the same time, I had to work at being objective, pragmatic: Your father is in no shape to return home, so get ready to do what you have to do.

  But a deep dread of the nursing home decision was all-consuming, most especially with my father’s frightened words and the image of his tears still filling my brain. Stay calm, I would tell myself, when Pop would awaken to see my face there beside him with a look of recognition and love—such love as I’d never seen from him—the love now like that of a child for his parent, a love that embodied hope amid delirium when he looked up and asked me, “When are we going home, Derrell? I’m tired of being in this funeral home.”

  During my bedside vigils, I would flash back to those prison days, could not help but think of Pop’s long drives with Mama to distant prisons, to see me every month. I remembered those moments when there was not much to talk about, when the three of us would simply sit in silence. Moments when I received comfort from just their presence and from memories of the devotion they gave to me, their wayward child, for so many years.

  Though I’d known it all along, I now felt it: it was their love and devotion that had sustained me during those twenty years inside. It was their uncommon loyalty that had given me a chance at redemption. And while I might have felt a modicum of satisfaction at being there for them, as they’d been for me, I now had to make a decision that filled me with an unimaginable dread: I had to commit my father to an institution, commit him to a nursing home, a place that, in my mind, was actually a prison—a prison where he would surely die.

  And so it was that I instructed Karen the social worker, a sweet, African-American woman with freckles: Go ahead and prepare the papers. She then had to locate a home for placement, as the hospital covered only care needed immediately and then they more or less forced a discharge upon you. Pop had gone in on a Sunday night, and the doctor scheduled his release for a Friday. On Thursday morning I called Uncle Julian, who by now had become the legal guardian for my parents, and told him to be prepared to come in on Friday to sign Pop out and then to travel with us to the nursing home.

  Then on Friday, when Pop was awakened for lunch, he looked over at me, then looked around, and with a degree of cogency asked, “How long have I been in the hospital?”

  I could not believe it. “Do you know where you are, Daddy?”

  “Yes,” he said, “this is Memorial Hospital, ain’t it?” I told him that indeed it was and asked if he knew where the hospital was located. “Why you ask me that? Of course, I know. We’re just up the street from your house.”

  It was miraculous. He sat up and ate every bit of his lunch, lucidly asking me how Mama was, and if I was going to take him home later that day. I told him that the doctors wanted to keep him one more day, and that then he would be able to go home.

  I stayed with him all of the day and into the evening, to make sure this seeming recovery wasn’t a fluke. I arrived at the hospital early the next morning and found that he was in some semblance of his right mind, still knew where he was, and was still anxious to go home to see about Mama.

  My father’s doctor told me that evidently he had just been thrown out of kilter from having had a urinary tract infection. “When a patient has Alzheimer’s, anything that goes wrong with the body can throw them into delirium,” he said.

  When I talked to the social worker, she suggested that I go ahead with commitment. “He’s going to have to go sooner or later,” she said, “and, while I hate to say it, sooner is usually better—not only for him, so he can get adjusted while he still has some of his faculties. But moreover, I’m thinking about you. I see what you’ve been going through, and I’ve seen hundreds of situations with caregivers, with all of the stress. And I hate to tell you, many of them end up passing away before the ones they’re giving care to. You need to think about looking out for yourself, too.”

  We were in a tiny, closed meeting room, just off the corridor, near the nurses’ station for the floor. It was smaller than some of the prison cells I’d seen, and I felt closed in.

  “I need to make a call and talk with my uncle. He is the legal guardian and conservator, and he’ll have to come in to sign the papers,” I told the young woman. But I
really needed to just get out of the room. I asked her if she could wait there a moment while I stepped out to make the call.

  Walking down to the end of the hallway, where there was a bit of light coming in from a window, I noted that all the halls were painted in shades I knew very well, various gradations of what I call “institutional pastels”—bland greens and blues, or beige. I realized that the same sanitized colors, scientifically processed to reduce madness on submarines, would be what Pop would be seeing in a nursing facility. The landscape man would never again see the lush greens of the land that had been passed down from his father’s farm, where he’d built his home.

  By the time I reached the window, I had made my decision. I pulled the cell phone from my pocket, called Uncle Julian, and told him he needn’t come. I was taking Pop home.

  * * *

  Several months later, Mama was hospitalized with what appeared to be a stroke. After a week of hospitalization and a desperate search for a bed in a nursing home, I called the prosecutor who had called for the max in my case—life, for the armed robbery I had committed—but was also instrumental in my making parole. We had become friends, in a sense, after my release. He made a call to one of the best nursing facilities in the city, where his mother had been, and I was able to get Mama into a place called Roman Eagle. It was an irony that, by befriending a one-time antagonist, I found that he would bring his influence to bear and come to our rescue.

  Still, taking Mama out of the hospital and committing her to the nursing home filled me with sorrow and guilt. For a while I felt compelled to visit her every day and found that doing things for her like helping her to eat, or doing her nails, brought out a certain tenderness in me. But I soon realized that I couldn’t continue to go see her every day.

  Though she had begun to do much better than had been the case when she was at home, I was still wracked with guilt every day that I did not visit. I tried to make up for missed days by paying a private sitter to keep her company, but this began exhausting the available funds, because Pop’s round-the-clock care had continued. Though heartened by improvement, visits to see her left me even more depressed. The pain of seeing her struggle to walk again—with the belief that walking would enable her to return to her home—was heartrending every time I was there.