Falling in Like: An Alzheimer Odyssey

I sometimes yearn nostalgically for that old fire in her eyes. More twists and turns await my wife and me on this strange voyage to the very ends of sanity and the edges of madness. I know—but hope she does not know—that, as in many adventures, there lurk many more monsters to slay and unspeakable horrors to endure…

Reading the Tea Leaves
Decades of conditioning are hard to change: My muscles tensed, and I gave a short sigh of exasperation. Those words always have had that effect on me; I had heard them so many times before. Hundreds, probably thousands, of times before: “Adam, can I see you for a moment, please?” They once filled me with dread. Dread, and irritation, and sometimes fury. They were too often the prelude to a fierce fight; the first salvo in a seemingly never-ending battle that could rival, in both brutality and desperation, the siege of Stalingrad.

I looked up from my laptop and could see how upset and frustrated she was; tears welled in her eyes. My mood changed instantly. “Sure, of course. What’s wrong, sweetie?” I asked. Without another word she turned abruptly and walked to the kitchen, me following behind. On the kitchen island was a scattering of various tea bags. With a flourish of her arm, she looked at me despairingly and said: “What am I to do with all of these?” Confused, I responded that she could do whatever she wanted with them. This upset her and she almost screamed: “You told me the tea drawer was a mess and I needed to organize it! How can I organize it when I don’t know what you want done with these teas?” Tears were now streaming down her face.

The “tea drawer” is the drawer right below the drawer holding our eating utensils; it was wide open and glancing over I noticed that all of the boxes of tea were now arranged very neatly, but the loose tea bags of varying flavors remained scattered on the kitchen island. Calmly, I explained that I had never told her the tea drawer was a mess and, in any event, it was certainly fine with me if it was messy. But this just made matters worse: “You told me it was a mess! And you told me I had to straighten it out!” Dumbfounded, I foolishly responded that I would never ask her to do such a thing and repeated that she could do whatever she wanted with the loose tea bags. Now, even more stressed and confused, Kay started to shake: “Adam, I’m just trying to do what you want!” Finally coming to my senses, I realized there was nothing to be gained by continuing to insist that I had not complained about the drawer. Thousands of years of Sicilian natural selection kicked in and without skipping a beat I marveled at how well-organized the teas were inside the drawer. I was effusive, nodding my head emphatically and telling her that the drawer was really so nicely organized now. I reassured her that I would tend to the ones scattered on the island, and then I thanked her over and over again for doing such a great job.

A few years ago, such comments would have further exacerbated the tension. Kay would have seen them as patronizing and condescending and as a feeble attempt (all true) to just avoid prolonging the fight. But this time was profoundly different. She sighed in relief, she smiled at me, she wrapped her arms around me, she nuzzled her head into my chest. What a painful joy, what a heartbreaking delight, I thought to myself. She can barely fold napkins anymore and had long ago lost the ability to fold clothes, but she was determined to arrange that tea drawer that she thought I wanted to be straightened out! As I stroked her hair, I repeated again and again that she did a great job and that I was so grateful for all she tries to do.

Accepting a New Reality
That is the truth. Her efforts are not just laudable; they are heroic. Kay has Alzheimer’s (with a Lewy Body component), and she knows it. By my calculation, it has been at least six years since the first symptoms became obvious, although the diagnosis was not until a few months ago. Kay is highly educated and having an IQ of 165 helped mask the symptoms for a long time. Her knowing she has Alzheimer’s is perhaps the cruelest part of the illness. It reminds me of the novella Flowers for Algernon and how perhaps it is better to have a very low IQ rather than have an IQ that is just a little below average—when you still have enough self-awareness to realize you are not smart. That is where Kay is right now: Still aware enough to know she is disappearing. Is there anything more frightening than to watch oneself fade away?

As with almost everything, when I first raised my concern about her memory loss back in 2012, Kay responded angrily and argued forcefully that I was the one with a poor memory. How could I argue against that? It is true. I am always forgetting things; Kay was the one with the ironclad mind. I was the one who could never organize anything and who was so bad at handling money that it fell completely to Kay to decide how to save and invest our money. I never knew what we had or even where she invested. For well over thirty years she did a spectacular job. When I finally had to take over finances three years ago, I was amazed at how much she had saved and how wisely she had invested.

But while her brain was slowly eroding, her personality was as strong as ever: She refused to accept that she had any problem until two years ago. Until then, I was just “overreacting” and trying to “undermine” her, trying to attribute to her my own failings. This was completely understandable and even the doctors were skeptical at first. Her scores on various tests were well above the average; what they did not fully appreciate was that Kay was anything but average intellectually. She had always been so organized, so meticulous, so mentally sharp and, well, so anal retentive, that I knew something was amiss.

Remembering Yesteryears; Forgetting Yesterday
One day a couple of years ago I looked up and saw that her blouse was both inside out and on backwards. The blouse itself was a bright checkered pink and did not at all match her purple striped pants. This was not the fashion sense of the woman I had known for almost four decades. It oddly reminded me of when we first met. We had both entered government service in the autumn of 1980 and were both in the same orientation class. As was too usual, one day I stumbled into class a few hours late with a horrific headache, recovering from a hangover from the night before. I slouched into a chair, wearing cutoff jeans and moccasins, unshaven and bleary-eyed. But not so bleary-eyed that I didn’t notice the perfectly-coiffured and professionally-dressed young woman near me, sitting up straight, hands folded primly in front of her, her shoulders rigidly pushed back, and her delightfully-protruding chin sternly focused on the lecturer. I was captivated; she was disgusted. For the next thirty-five years, she fought a valiant battle to improve my appearance, and she more or less succeeded enough that my career never derailed.

Beauty and Wonder All Around Her
It would be nonsense to pretend that what is happening is not frightening and horrific, but every tragedy has its beauty. And Kay’s sense of beauty, always exceptional, has sharpened and deepened over the last few years. Last year we took a trip to Prague, and as we wandered through the marketplace, our son grabbed my arm and pointed vigorously toward his mother. As I turned to look, I saw her on her knees before a flower stall. There were tears in her eyes and she was smiling. She looked up at me, and the look on her face reminded me of the look of ecstasy on that famously provocative statue by Bernini of St. Theresa. All she could utter was “Look, Adam, look how beautiful these flowers are!” and her tears kept flowing, tears of wonder and joy at the beauty of living things. It is striking how much more sensitive she has become to so many things. Sunsets and music have a new poignancy—even urgency—for her. I love how we can just be walking along and she will suddenly stop in awe of a tree or even just a leaf of no particular distinction that lies in our path. Only with children, still fresh to life and lost in wonder, have I ever witnessed such appreciation for our everyday world. She seems to have gained an almost mystic insight into this world, and I am often reminded of Blake’s lines: “To see a World in a Grain of Sand and Heaven in a Wildflower.”

Rules Were Made to be Followed?
If there was one thing—other than my bare feet and unshaven face—that irked Kay, it was my immature dismissal of rules. Our first argument took place only a few days after we started dating. We were walking near Arlington Cemetery when we came upon the Netherland Carillon, a wondrous structure with a high fence surrounding it. The fence gate was locked, so without hesitating, I started to climb over the fence, blithely ignoring the “No Trespass” signs. Kay immediately started to yell at me, which was completely baffling to me at the time. I tried reasoning with her: They don’t want people trespassing because they don’t want them to vandalize the place or to get injured. Neither of those things are going to happen, so it is okay to scale the fence, I concluded patiently. Well, that just infuriated her more.

This same theme arose over and over again. At the Bull Run battlefield, I placed the children on a cannon to take a picture, again ignoring the signs and again prompting an outcry from Kay. How, I asked, could we possibly damage a cannon that had withstood Stonewall Jackson and his troops? She was not amused. And when she let loose on strangers, it was formidable indeed. Once while touring the Sistine Chapel some woman started taking flash photography. Kay scolded her, explaining how it could damage the paintings and disturb the other visitors. The woman, pretending not to understand English, responded in French. Without skipping a beat, Kay lambasted her in fluent, outraged French! The woman sulked off much to the amazement of our children and the glee of the other visitors. So, it was truly stunning about a year ago when I went shopping with Kay at our local grocery store. She always pushed the cart to steady her gait, but that particular day I noticed that she was not beside me in the aisle. Just as I turned around to find her, she glided by, aloft with both feet on the cart, rolling recklessly down the aisle with a look a sheer childlike joy on her face. I was both stunned and delighted—and a little worried for her safety.

Sometimes I wonder if this dreadful disease has not unlocked some delightful aspects of a personality that was never allowed to blossom, that was stifled either by her own innate sense of propriety or her upbringing. Often, I would complain to her that she should just relax and enjoy life. That it is of no use to wage war against every injustice and it is foolhardy to never be satisfied with how things are. To which she would always reply that being dissatisfied is the engine of progress, and that if people like me ran the world we would still be living in caves and scavenging for food. And, of course, she was right.

Holidays, too, have changed. In many ways, they are more subdued and less vibrant, as Kay increasingly succumbs to a listlessness that even the joy of Christmas and wonder of Easter cannot enliven. But they have also become far less stressful. Far less in need of perfection. In retrospect, I am almost ashamed to realize that the last few Christmases have been the best, at least in terms of fewer arguments and tears. No more arguments now about who broke or lost or poorly wrapped some ornament last year; no child in tears for being scolded for being too boisterous or too loud. Christmases now lack many of the old traditions that I still yearn for—especially lighting the Advent wreath each night, then saying a prayer and singing carols. But so often the singing would be marred by Kay’s insistence that only religious carols could be sung, no matter how the children pleaded. And no talking once the candles were lit. And so many other rules. But still, I miss her soft, gentle voice singing and how her eyes glistened in the candlelight.

More Surprises and More Sorrows
I looked up stunned. Truly stunned. I’m pretty sure my mouth hung open in absolute surprise. I had just made a typically obnoxious, marginally witty, remark at the dinner table… and Kay had burst out laughing. She laughed and laughed, and then kissed my cheek. I wouldn’t say she never appreciated my sense of humor over the last four decades, but the appreciation was so muted and rare as not to be worth mentioning. But now she laughs all the time when I joke around. Almost two years later and I am still surprised each time. Perhaps it is part of her being able to relax and open up more in general. Always an inveterate introvert, Kay has for the last few years become a great conversationalist, especially with strangers. It is delightful to watch as she engages with almost everyone and anyone she meets along the street or in a store or riding a plane or train. And children, whom she has always loved, have now become as mystically wondrous as those flowers in the Prague marketplace. Each one must be marveled at and publicly lauded with effusive compliments.

It is, therefore, one of the cruel ironies of this disease that just as she has come to really enjoy speaking with people, she no longer can speak well. She was always so articulate and always had such an amazing command of English—and half a dozen other languages. To watch her struggle each day for the right word and so often fail is to die a little each day with her. It is heartbreaking that a woman who took such pride in her words cannot now always find them. And worse, when she strives too hard, the wrong word comes out. Often this is too painful to bear and you find yourself struggling to telepathically convey the right word to her, never daring to actually say it aloud and hurt her feelings. But even this sorrow is sometimes tinged with irrepressible laughter. Once, for example, she was explaining how tightly packed the airplane was with passengers and she blurted out “we were all cheek to bowel.” Laughter erupted around the table and I was happy to see that Kay, too, who was always so sensitive to being laughed at, laughed along cheerfully.

Many days resemble World War I trench warfare. Every inch is fought for fiercely, and the trench lines move forward only very slowly. As I mentioned, it took Kay several years to admit she even had a memory problem, then it took her another year before I was invited to join her in her meetings with doctors. That was a big deal for such a private person! Then another year before she relented and let me keep tabs of her medications and ensure her pants and shirts are not on backwards. And only recently has she allowed me to do some laundry—I took over cooking and house-cleaning several years earlier. One of the last bastions of resistance remains her dresser drawers. They are sheer chaos, with socks, underwear, and assorted other clothing scattered in each drawer, but each time I offer to organize it for her, she insists that I would ruin her “arrangement.” Instead of arguing now, I just take an hour every few weeks and re-fold everything and place items back in their proper drawer. It’s time consuming, but I sense she needs to feel she is at least in control of something and that she can handle a few things independently. In the old days, Kay would be disappointed with me for resorting to subterfuge and not being absolutely honest with her, but it is better not to tell her how messed up her drawers really are. She never could understand the value of a good lie or the sin of telling some truths. Now she just smiles, happy that her drawers have magically been arranged neatly.

I sometimes yearn nostalgically for that old fire in her eyes, as she would bestride an argument, elbows akimbo, and hold on to her opinion more tenaciously than any terrier ever clung to a bone. Now the arguments still erupt quickly, but they subside almost as speedily, the rudiments of a well-orchestrated assault floating away like fog as she struggles haplessly to keep them in regimental formation in her mind. The look of defeat that crosses her face each time she falters at articulating her view is painful to observe.

Into That Good Night…
For me, Kay was always easy to love and to admire and to respect. She was, however, at least until recently, hard to like. Probably she would say the same of me. Some people are just incompatible. But one thing I always really liked about her was that she was extremely affectionate, a world-class snuggler. Even in the midst of our worst arguments and even if we weren’t even talking to each other, our bodies showed a greater wisdom and we would end up close together as we slept. That too has changed in a subtle, but fundamental, way. For her to sleep now, she must be touching me. The night hallucinations and the night confusion—sundowning the doctors call it—scare her. Invariably now she takes my hand that is draped over her body and holds it tightly in her own hand as she sleeps, as if we are about to embark on an uncertain journey into the darkness and we need to hold hands in order not to get lost.

She cries often. The tears are real; the pain is real; the fear is palpable. But it is a daily, sometimes hourly, occurrence and the heart—at least mine—sometimes hardens or, at least, numbs. I strive to act compassionately, but sometimes I falter and just walk away.

A disturbing thought crosses my mind: Is this how concentration camp guards came to feel? How our own soldiers felt at My Lai? And this journey is far from over. Even darker times lie ahead. There will be more night terrors and much despair. More twists and turns await my wife and me on this strange voyage to the very ends of sanity and the edges of madness. I know—but hope she does not know—that, as in many adventures, there lurk many more monsters to slay and unspeakable horrors to endure.

Unlike in the Odyssey, this journey will not have a happy ending, although like Ulysses, after all this confusion and pain, Kay will at last find final rest. Last night, as Kay lay sleeping beside me, I used an online tool to calculate the probable time we have left together. For a moment I could not breathe realizing that the time—if the experts are right—is far too short. Riptides of remorse and compassion battered me and I lay there motionless, frozen in fear. I took a deep breath, said a silent prayer, steadied my nerves, and gently wrapped her in my arms. Still asleep, she reflexively reached out and grabbed my hand. As I drifted to sleep, my face pressed against the nape of her neck, I remembered Tennyson’s great poem:

Tho’ much is taken, much abides; and tho’

We are not now that strength which in old days

Moved earth and heaven, that which we are, we are;

…Made weak by time and fate, but strong in will

To strive, to seek, to find, and not to yield.

Written by Adam Philips for The Imaginative Conservative ~ August 29, 2018

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