Us Against Alzheimer's

by Marita Golden

  And she became one, working at the Pentagon for forty years until her retirement. She’d come to Washington and taken the Civil Service test, the successful passing of which in the 1950s and ’60s was a nearly hallowed entry into the middle class for generations of African-American strivers like May and Jimmy. If you had a “good government job,” it was felt back then you were set for life.

  Why do I feel so close, so connected just by the recitation of her past? I sit with an eighty-year-old woman who is unsure of who I am, trying to discover who she is. In those moments, I feel the deepest tenderness for May and for myself. And after years of being her neighbor, this is the most intimate conversation May and I have ever had.

  And then she asks, pointing a spindly finger at me and looking at the photo, “You Jimmy’s sister, right?”

  “No, May. I’m Marita. You and Jimmy lived near me.”

  “Oh, that’s right.”

  May whimpers, “I miss Jimmy. It’s so hard. I sit here waiting for him to come back. Why did he leave me?”

  “I don’t know May. I don’t know. He just had to go. He was sick and he had to go.”

  Clutching her fingers, willing my hand to give her answers my mouth cannot speak, I wonder at the bond I feel like the beating of my heart. I feel flush with a soothing and complete connection to a woman who I have come to know in the years of her decline. A woman who for some “is not all there.” I think of how I am drawn to these visits, which often leave May replenished. Unlike her children, in her presence I do not long for the woman she used to be. No ghosts hover over our time together.

  As her neighbor, I knew her from afar. Dementia has brought me into her life up close. I have chosen to look this closely. We sit talking against the odds, against the usual definitions of what conversation means. In this sacred space and in these sacred moments, we are outside the usual borders. Maybe at this point as we sit here together, there are no borders at all and it is possible to realize that there never were. I am drawn to visit May because she teeters on the tightrope between life and death. She is painfully thin, and I fear that soon she will join Jimmy, that she will die as it is possible to do, of a broken heart.

  Taking a deep breath, May asks, “You Jimmy’s sister, right?”

  “I was your neighbor, May. Your neighbor.”

  “Oh, okay.”

  Who am I? Who are you? I can almost hear the questions roiling in May’s brain. The “I” being herself. The “you” being me. The “you” could also be May when she looks in the mirror. How unmoored she must feel, sitting on a sofa in a small room that is now her home, aware of the most important things that she has lost, grasping with the strength that remains what unfolds right before her eyes.

  Her trembling fingers graze the folds of the roses, tightly coiled, not yet in full bloom.

  When I visit May, I expect nothing, I ask nothing. I am the giver. She is too. I am prepared for and accepting of whatever happens between us. Whatever does not happen between us. There is nothing between us, and so that makes room for everything.

  Her memories remain, and those memories give her life. She is her memories, old ones and new ones. I sit in the intractable presence of what I cannot change or alter. “She’s my baby now,” I’ve heard her children say. But babies don’t have memories of fully lived lives. And in touch to touch, May and I exchange the essence of the lives we both have lived so far.

  HEADING OUT TO PLUTO

  An Excerpt from On Pluto: Inside the Mind of Alzheimer’s

  GREG O’BRIEN

  My wife finally broke the silence.

  “Do you know where you are going?” she asked.

  I wasn’t sure on a number of fronts. So, I just kept driving.

  The exit for Plymouth came up quickly, an anesthetizing ride north on Route 3 past miles of scrub oaks and pines. I had to call several times to the office of neurologist Dr. Donald Marks to get the directions straight. I was a bit on edge, awaiting results of a SPECT scan brain image test.

  On the third floor of a boxy red brick building, Dr. Marks’s office had all the ambiance and accoutrements of a hospital waiting room. Opening the door, I felt as though I were slipping into Lewis Carroll’s Alice in Wonderland where “nothing would be what it is, because everything would be what it isn’t.”

  I was dizzy with delusions of what could lie ahead. The office was filled with decent individuals, mostly in their eighties, all with cognitive impairments, picking their way through the perplexities of age and a maze of cruel games the mind can play. At fifty-nine, I was the only “young” man in the room (yikes!), and saw myself outside the box of dementia, yet felt trapped within it. I glanced at my wife.

  Like most couples, we’ve had our ups and down in marriage, more ups, hopefully, than downs. I felt bad for her. Today was a trip down.

  I was told earlier that Dr. Marks, an expert in the study of the mind, gets right to the point. “He’s precisely what you need; a skilled neurologist who will speak directly, no bullshit,” Dr. Barry Conant, my personal physician and a close friend, had advised me earlier, sounding a bit like my dad, who delighted in telling others that he customarily had to drill a piece of granite between my ears just to get my attention.

  Dr. Marks lived up to the billing. Knowledgeable, cerebral, and caring in a clinical way, he put me through the paces of more clinical tests: word recall, various supplementary checks on short-term and long-term memory, category naming, visuospatial skills, and other evaluations. I flunked them all. Bottom line: the clinical tests reinforced Dr. Gerald Elovitz’s initial forthright assessments and diagnosis and the SPECT scan identified a brain in progressive decline. His formal diagnosis: “EOAD,” as he wrote in his report. I glanced at it quickly, misreading the first letter perhaps from some related dyslexia, and thought for a moment that he had written, “TOAD.”

  “No,” he said, “early-onset Alzheimer’s disease.” The words cut into me like a drill press.

  “I can deal with this,” I said defensively. “This is not a surprise. I can fight it.”

  My reporter instincts kicked in. I showed little emotion, just digested the diagnosis on a self-imposed deadline. Facts, get the facts straight. I first thought about my mom, about my grandfather; I knew the deal. I wanted more facts. This was no time for emotion. The vital questions of who, what, when, where, why, and how flashed through my head, which felt little sensation at the moment. I was afraid now to look at my wife, so I stared at Dr. Marks, trying to remain in a state of control that I had just realized was beyond me. After all, I’m a baby boomer and we’re all in control. At least, we suppose.

  Finally, I gave in to the emotion.

  I felt Mary Catherine staring at me. I think she must have known all along.

  “What do we tell the kids?” I asked her. My voice splintered. When you’re married to someone for close to four decades—when you’ve been through all the “for better and for worse” throes of marriage, when you have a partner who knows you almost as well as you know yourself, when you’ve been in love, fallen out of love, fallen back into love, and drifted—then at a time like this, little needs to be said. We both knew what the future held. No one had to skywrite. We were all about the kids.

  Mary Catherine grabbed my hand, we nodded, and then listened to the doctor. The moment is embedded in my mind in a freeze frame. Dr. Marks, a man of great compassion and incredible intellect, offered support, but got right to the point.

  “You need to take the diagnosis seriously,” he counseled me in front of my wife, having been prepped in advance on my aversion to reality. “You have a battle ahead of you. I’m speaking to you as if you were terminal. Are you getting this?”

  I was. There was hardly a tone of political correctness in his voice; I needed the reality check. You must know your enemy—study with military precision—to fight your enemy.

  Alzheimer’s is a death sentence. The words resonated throughout my mind. I stared at Dr. Marks with the same vacant expression of
looking out across Cape Cod from the Sagamore Bridge. I felt the tears running down the sides of my face. My eyes didn’t blink.

  “A most unusual situation of a bright man who had the opportunity to witness dementia in a parent . . . with self-awareness of early symptoms within himself,” Marks wrote in his initial report, dictated on voice recognition software as if the report were being written in slow motion before me. Marks also observed that a previous brain MRI revealed some “frontal Flair/T2 changes, consistent with a previous head injury.”

  “This may have ‘unmasked’ Alzheimer’s pathology,” he added, “but his genetic loading is striking. . . . The brain SPECT scan is most compelling in clinical context for Alzheimer’s.”

  Marks encouraged me to remain as physically fit as possible “as he is to keep his cerebral blood flow out. I suspect he is exhibiting the phenomenon of ‘cognitive reserve’ in which case he may tolerate on a functional basis impairments further into the baseline underlying pathophysiology of the disease longer than one who does not have the same cognitive reserve.”

  “The diagnosis has been made, in my opinion,” he concluded in his report. “I am not sure how much longer he has in terms of being able to reliably and meaningfully provide the quality of work he has put out in the past. The general point is there needs to be balance between a healthy desire to overcome obstacles and yet acknowledge fundamental reality.”

  A final word of advice, Marks urged me to meet as quickly as possible with an estate attorney to protect family assets, given the statutory five-year “look back” during which a nursing home can attach personal properties and bank accounts. He also recommended that I designate a healthcare proxy and future caregivers, and assign power of attorney.

  In the space of a bleak afternoon, my identity in the real world—my mind, along with the cherished red cedar shingle home that I had built for the family about thirty years ago, the one with the high-pitched, red cedar wood roof on about two acres of farmland off a winding country road that was now a part of a National Register of Historic Places—was on hold.

  There wasn’t much more to hear or to say. We left the office and drove home in silence most of the way. The stillness spoke volumes. I couldn’t wait to get back over the bridge, my Linus security blanket. Lots to digest quietly in a forty-five-minute ride home. The sense of urgency was choking—to-do lists of cleaning up relationships, end-time planning that we all like to put off, and the strategies of surviving financially, physically, and emotionally. Many before me and many today, I thought, have been captive in such a contorting state of affairs with a range of disabilities, health issues, and timelines. I wasn’t alone. Yet, I felt so isolated.

  I felt sad for my Mary Catherine. This wasn’t fair to her. And I couldn’t fix it.

  Dammit, I couldn’t fix it!

  The tool box was empty. I couldn’t repair my brain. Ever. Not even with duct tape. All my adult life, I had relied on duct tape to fix leaks from the upstairs bathroom in the kitchen ceiling, “repair” broken appliances, hang posters, fix a tail light, repair a garden hose, act as a big Band-Aid, steady a cabinet door, fix a hole in the wall, hold a car door shut or a car window in place, fix a toilet seat cover, hold a choke in place on an outboard engine for the boat, as a Wiffle ball, a tool belt, and once, as a last resort, as an Ace bandage for a pulled groin to get through the 5K Brew Run one hot August day in Brewster.

  “How are you doing?” I finally asked, as if from Mars.

  My wife, as author John Gray might put it, is from Venus. I love Mary Catherine, but often she doesn’t want to be confused with the facts; she seeks a safe harbor, as any good sailor does. I fly by the seat of my pants. I find reality far below the surface, bottom-fishing for answers. My wife, to the contrary, is more comfortable at sea level. You say “tomato,” I say “to-mahto.” A fixture in our marriage, but we ain’t calling the whole thing off! “Well, we have a lot to consider,” she said; an understatement that could fill the Grand Canyon.

  I knew. Like me, she felt alone.

  Then we came upon the Sagamore Bridge, “the seventh bridge of Dublin,” as it’s called in Éire, given the number of emerald transplants on the Cape. That’s when the faith kicked in—a bridge to a new reality, a new hope for me. I was going home, sanguine about the fact that I had some answers in hand. But for Mary Catherine, it was new isolation this side of the Mississippi. Mary Catherine was born in Phoenix. As we coasted to the crest of the Sagamore, I thought of John Belushi in the classic movie Animal House.

  “What? Over? Did you say ‘over’?” the unrelenting Bluto Blukarsky declared at the Delta House, urging his brothers to fight on. “Nothing is over until we decide it is! Was it over when the Germans bombed Pearl Harbor? Hell no!”

  Germans?

  Hey, I was on a roll. So I charged over the Sagamore Bridge with a satchel of denial.

  Life goes on, doesn’t it?

  HELL NO!

  An Excerpt from On Pluto: Inside the Mind of Alzheimer’s

  GREG O’BRIEN

  The journey through Alzheimer’s is a marathon, if one chooses to run it. It is exhausting, fully fatiguing, just staying in the moment and fighting to remember like an elephant, the largest land animal on Earth.

  Elephants are my favorite. They have documented long-term memory, coveted today by boomers. On a shelf in my office is a small ceramic elephant holding a fishing pole. I purchased it years ago from a gallery in Santa Fe, a cerebral place of awe-inspiring natural light. The ceramic serves to remind me daily of the need for retention and focus. The artwork has a place of prominence: it is the elephant in the room.

  The word “dementia” is onomatopoeia for many, a word that conjures up a sound—in this case, a howl in the night or biblical imageries of a demonic maniac, a portrait no one wants to own.

  Dementia is derived from the Latin root word for madness, “out of one’s mind,” an irreversible cognitive dysfunction, a walking nightmare in which you can’t escape the bogeyman no matter how fast you run. Alzheimer’s is a marathon against time, and so I keep running to outpace this disease that ultimately will overtake me. Symbolic of the race, I run three to four miles a day, some of them at a pace of five- to six-minute miles on a treadmill, not bad for a man in his seventh decade. The rage within drives me to outrun the disease, but the sprinting will not halt the advance of ongoing memory loss, poor judgment, loss of self and problem solving, confusion with time, place, and words, withdrawal, abrupt changes in mood, and yes, the flat-out, earsplitting rage.

  Words are the core of my life, and they are now lost on me at times. I often transpose words in what some medical professionals call an “attentional dyslexia.” Public restrooms can be a problem. I look for the word “men,” but at times, delete other letters around it, entering on occasion the “wo-men’s” room, like a deer caught in headlights. The astonished look upon my face belies the innocence of my brain.

  I think of my brain today, once a prized possession, as an iPhone: still a sophisticated device, but one that freezes up, shuts down without notice, drops calls, pocket dials with random or inappropriate conversation, and has a small battery that takes forever to charge. The inner anger is intense and manifests with Tourette’s-like expletives and curses, involuntarily at times and in primordial fury over what is happening to me. I try to hide it from family and friends; often I can’t. I’ve spoken to priests and ministers about the guilt of taking the Lord’s name in vain; they tell me that God is resilient, everlastingly forgiving; that the Lord has wide shoulders. While we have free will, in God, there are no secrets.

  Always persevere, the late legendary Brooklyn Dodgers pitcher Ralph Branca, a mentor and father figure, instructed me as a youth. Branca, who tossed the fabled home run pitch to New York Giant Bobby Thomson at the Polo Grounds on October 3, 1951, once told me, “God doesn’t give you more than you can handle.”

  I never forgot that. Yet in a moment of doubt, I wonder. The fight against this disease consumes me,
as with others, seven days a week, twenty-four hours a day mostly, often intentionally outside the wheelhouse of observers, but more and more in an embarrassment of lapses when one side of the brain, the frontal lobe that directs executive functions, continually wants to shut down, while the occipital lobe, the rear-most portion of the brain that controls creative intellect, declares: Hell no! The battle is numbing, like witnessing a head-on crash in slow motion when one can’t remember how to find the brakes.

  Today, I have little short-term memory, a progression of blanks; close to sixty percent of what I take in now is gone in seconds. It is dispiriting to lose a thought in a second, 72,000 seconds a day in a twenty-hour period of consciousness; to stand exposed, and yet stand one’s ground, to begin to grasp in fundamental, naked terms, who one really is—the good, the bad, and the ugly. The ugly is haunting to me; the many things one would like to take back over the years, but cannot—feelings of failure and transgression.

  I rely on copious notes and my iPhone with endless email reminders. I am startled when my inbox tells me I have forty new emails, then I realize that thirty-five of them are from me. The reminders help, though often I have no sense of time or place, and there are moments when I don’t recognize people I’ve known most of my life—close friends, business acquaintances, and even my wife on two occasions. Sometimes, my mind plays games and paints other faces on people. Rather than panic, I just keep asking questions until I get some answers, or at least avoid yet another awkward episode. I work hard at deflecting the loss of judgment and filter. I find myself becoming more childlike, curiously enjoying the moments of innocence and potty talk. It’s a reversal of fortune. In college, I was a history major, an honor student, good at rote memory. Fuggedaboutit now, Mr. Potato Head!