I knew she was dying and I tried to make the most of it. But ever since she died that same feeling is still there; that same regret, that same wish that I just need one more day, one more chance to tell her I love her, one more chance to kiss her, to thank her, to say good bye to her. I don’t think it is ever enough; there is never enough time.

Falling in Like (August 2018)

Reading the Tea Leaves

“Joe, can I see you for a moment, please?” Decades of conditioning are hard to change: my muscles tensed and I gave a short sigh of exasperation. Those words had always had that effect on me; I had heard them so many times before. Hundreds, probably thousands, of times before. Those words 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 in my self-centeredness I believed 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 welling in her eyes. My mood changed instantly. “Sure, of course. What’s wrong, sweetheart?” Without another word she turned abruptly and walked to the kitchen, me following behind. On the kitchen island were 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 more 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, Sharon started to shake: “Joe, I’m just trying to do what you want!” Belatedly 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 wonderfully 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. Sharon would have seen them, accurately, as patronizing and condescending, and as a feeble attempt 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. 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 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 were not just laudable; they were heroic. Sharon has Alzheimer’s (with a Lewy Body component) and she knows it. By my calculation it has been at least 7 years since the first symptoms became obvious, although the diagnosis was not until a few months ago. Sharon 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 and be oblivious to mockery and shame rather than have an IQ that is just a little below average—when you still have enough self-awareness to realize you are not different and intellectually inferior. That is where Sharon is right now: still aware enough to know she is disappearing. Is there anything more frightening then to watch oneself fade away?

As with almost everything, when I first raised my concern about her memory loss back in 2011, Sharon 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; Sharon 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 Sharon to decide how to save and invest our money. I never knew what we had or even where she invested. For well over 30 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 the doctors did not fully appreciate was that Sharon 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 the Foreign 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, unshaven and bleary-eyed, wearing cutoff jeans and moccasins. 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 35 years she fought a valiant battle to improve my appearance and behavior 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 Sharon’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 Thomas 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, Joe, look how beautiful these flowers are!” and her tears kept flowing, tears of wonder and joy at the beauty of this world. It is striking how 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 among 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 verse: “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 Sharon, 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 in mid-March 1981 when we came upon the Netherlands 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. Sharon 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 is going to happen, so it is OK to scale the fence, I explained 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 Sharon. 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. Everyone around her was irritated, but remained silent. Not Sharon. Sharon 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, Sharon lambasted her in fluent, outraged French! The woman sulked off much to the amazement of our children and the glee of the other visitors. For Sharon to follow the rules and be respectful of others was hardwired in her soul. So, it was truly stunning about a year ago when I went shopping with Sharon 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 of 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 dangerously 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 Sharon 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 fury now about who broke or lost or poorly wrapped some ornament; 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 Sharon’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 Sharon 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 her 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. Always an inveterate introvert, Sharon 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 Sharon, 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 Sharon 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 on 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 Sharon would be disappointed, indeed furious, with me for resorting to subterfuge and not being absolutely honest with her, but it would be objectively wrong to tell her how messy 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 verbal 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 now breaks my heart. I yearn to be humbled and outmaneuvered and for her to vanquish me when we disagree on an issue, but that is no longer possible.

Into That Good Night

For me, Sharon 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. That was us. A deep, abiding devotion and love, accompanied by an equally deep disappointment in each other’s character and personality. 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 late-day 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 indifferent.

A disturbing thought crosses my mind: is this how concentration camp guards came to feel? How our own soldiers felt at My Lai? The whimpering and crying become as tiresome as the chattering of crickets and cicadas. 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 I on this strange voyage to the very ends of sanity and the edges of madness. I know (but I hope she does not know) that like many adventures there lurk many more monsters to slay and unspeakable horrors to endure.

But unlike in the Odyssey, this journey will not have a happy ending, although like Ulysses, after all this confusion and pain, Sharon will at last find final rest. Last night, as Sharon 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.

The Sun at Midnight (May 2019)

Each day a little further into the mist she seeps,
Each night more tightly she clings to the real.

The fog enfolds, ensnares, envelops:
Like a besieged city she remains steadfast and forlorn.

The fog no longer comes on little cat feet
Nor will it ever move on.

Relentless and indifferent
With wolf eyes it claws at her memories,
Now all shredded and bleeding.

She reaches out a hand from somewhere beneath the shroud,
She searches for love, for life, for me, for God.
Her hand is firm and soft and certain,
But her thoughts reel in clouds of confusion and despair.
Implacable, the fog spreads along the byways and alleyways of her mind,
Encircling her dreams and dashing hope on jagged stone.

Among Lotus Eaters (October 2019)

It has been over a year since I last wrote about this journey. And by my rough calculations it has been well over eight years since this journey began, although no one else seemed to know we had embarked upon this mad adventure at that time. The sea for many years seemed placid and calm, and we complacently drifted along, heedless to the subtly changing seascape.

It was during the summer of 2011 that I first detected that my wife’s mental faculties were changing. She was so brilliant, so well-organized, so relentlessly inquisitive and insightful, that minor lapses were nearly undetectable. MRI after useless MRI showed no serious change in brain imagery so the doctors did not pursue further inquiry. Even much later, in 2015, when I finally prevailed upon her to take a neuropsychological test, the results “proved” that she was suffering no serious impairment in either memory loss or rational thinking. The next year the test was repeated and while there was some erosion, the loss was minimal and she still excelled the average person who has no cognitive impairments. Her intellect, quite simply (and impressively), masked her disease and for several years the pathetically over-rated neurologists at Georgetown and elsewhere dismissed our concern that she was suffering an intractable loss of brain function. Not until April 2018 did a neurologist finally conclude, through the use of a highly-sophisticated Pet Scan, that Sharon indeed probably has Alzheimer’s with a Lewy Body component.

I say we are on a journey because the false bravado of “battle” and “combat” and “fight” so often recklessly used regarding other illnesses, most especially cancer, seems particularly false and silly when ascribed to Alzheimer’s. There is no fighting; there is no battling back; there are no rearguard actions and no sallying forth heroically. If cancer patients pray for a miracle on the scale of curing the blind or making the lame walk, an Alzheimer’s patient seeks a miracle on the order of Lazarus leaving his tomb. Even the indomitable Don Quixote would not venture to tilt at this particular monster; there is no worldly chance of remission or cure. Only a relentless hissing that whispers in your sleep: “Resistance is futile.”

Laughter Amid the Ruins 

There she was again, hovering on the upper steps of the stairway, calling forlornly to me. “Joe, can you help me?” That sweet entreaty usually means she has lost either her glasses or the TV remote or some article of clothing that she needs urgently to put on regardless of any true need to do so. I muffle my sigh of exasperation, but I fear that if it is her glasses yet again that have been misplaced, I may just scream. She has already misplaced them four times today and a fifth hide and seek escapade is just too much for me to tolerate. And sure enough it is her glasses that are indeed again lost and so I run up the stairs not even looking at her, fearful that if I do look at her she will see the fury in my eyes. I know it is not her fault, I know she is ashamed and angry with herself for even bothering me, and if I were a better person, I would not be irritated. But I am not such a person and I am angry.

I enter the bedroom and survey the furniture. Ninety-five percent of the time the glasses are in plain sight and I can quickly retrieve them for her and get back to whatever else I am doing. But not this time. The glasses aren’t in plain sight. Fifteen minutes later I have searched in every drawer and under the bed and on bookshelves and in random boxes and the glasses are still nowhere to be found. I take a deep breath and prepare to let her know that her glasses are for once really, truly, definitively lost. I look at her and I begin to open my mouth to tell her that I can’t find her glasses, then I immediately shut my mouth. I shut it quickly and I close my eyes tightly so I don’t say what I need to say too harshly, too nastily. I open my eyes again and look at her with a surprising affection, and effortlessly my mouth broadens into a smile and then a roar of laughter. I take her hands in mine: “Sharon, we can’t find your glasses anywhere in the room …. because you are wearing them.” She joins the laughter and hugs me tightly, a hug somewhere between shame and relief, gratitude and an essential appreciation for the absurd.

Stage Fright and the Siren Call of False Hope

So much and so little has transpired since I last wrote a year ago. One reads so much about the three stages or five stages or even seven stages of Alzheimer’s disease that one begins to think there are actually distinct and separate stages, as if you are descending from floor to floor in a house or skipping from isle to isle on an endless sea. I spend too many useless hours trying to gauge the progress (regress) of the disease: definitely the second stage in a three-stage classification; probably the fifth stage in a seven-stage classification, maybe a three or four in the five-stage one. But it is not like that at all. The ancient Greeks have ruined us by making us think in terms of classifications and categories and stages, when the reality is that all life and all existence is a continuum so subtle, imperceptible, and immeasurable that where one stage begins and another ends, is forever uncertain.

Like the life of a child developing from infancy to being a toddler to becoming an adolescent, the stages of this disease are arbitrary and imprecise and unique to each individual. Not only is change extraordinarily gradual but it is also nonlinear: some days you wake up and fool yourself into believing that the remorseless progression of the disease is not really progressing at all and that she is actually improving because she seems more articulate, more rational, more with it. But those days of seeming improvement are like the sirens beckoning you to a lethal madness. It is not real, it is not even possible, but the yearning is so strong and the reality so harsh, that you force yourself to believe that it is possible, that just maybe–but then reality smacks you full force in the face and you dismiss all illusions of improvement from your mind. Last month, for example, was her birthday. Incredibly, Sharon knew the exact day of the month; I was so thrilled. But then she proudly proclaimed that we should do something special this year because she would finally turn 50! I saw no reason to tell her she was off by a dozen years. These strange, unexpected lapses of memory are accompanied by equally strange and unexpected false memories. Quite often Sharon vividly remembers places we have never been, but not the places we have.

She is becoming as changeful and changeless as the sea. She no longer wears pants or shorts with buttons or zippers. No more pretense of setting a knife at her dinner plate. Either our 14-year-old son Thomas or I cut all her food into bite-size pieces. No more reading of the newspaper; no more trying to change channels with the remote. But still she hangs on to normalcy and routine: haphazardly feeding the dogs, sometimes succeeding in using the coffee maker, taking her own vitamin pills now and then. I think of the scrapbooks we compiled for our children: their first steps, their first words, their first days of school. As every parent knows, watching a child grow one cannot see changes day to day. It is only in looking back, reflecting on how the child was a year or more ago that we are startled and delighted with the changes slowly wrought by time. Just so, in a nightmarish dark reflection, I do not see the changes wrought day to day by this remorseless disease, but can only realize the horrors it is wreaking by looking back to what once was: four years ago, she cooked meals, three years ago, she still drove a car, two years ago, she dressed herself, only a year ago her sentences were almost fluid and her gait steady. Very importantly, one must continually remind oneself not to remind: it might be useful to tell a child to turn off lights, flush toilets, and not eat with their fingers, but it is useless–and needlessly cruel–to keep reminding an Alzheimer’s victim. Just let them be.

“Forgetful of their Homeward Way”

One should not too harshly fault Odysseus for forcibly dragging his men away from the bliss of the lotus eaters; his men were distraught and tearful and yearned to stay where they seemed to have always been. But Odysseus knows it is a false bliss that has stolen from his men their memories and rendered them “forgetful of their homeward way.” For what are we, Odysseus seems to ask, without our memories, especially our memories of home and hearth? Yet, I sympathize with those men clinging to their blissful state of oblivion, for they no longer yearn for those things which they can no longer have. And I see in Sharon a certain bliss that frankly comes from not remembering too well so many painful things. The outside world no longer infringes on her happiness: who is president? how is the economy? what is happening geopolitically? no longer buffet and beset her joy in living. For all of Sharon’s wonderful qualities, she had always been frustrated with her life, with her professional ambitions, with her place in the family, and even with the small day-to-day troubles that could have been handled gracefully with a smile or a laugh. It is so strange now to see her so stoic and so often at peace. It is a wondrously joyous and terribly sorrowful thing that these last few years have been among the best of our marriage. More laughter, more affection, and ironically, even better and clearer communication.

It is true she contends with night terrors and will unexpectedly burst with tears when recalling a particularly painful episode of her life, but for the most part she lives each day now without complaint, without criticism of others, and with almost no worries about the future or her life. She has gained an almost childlike trust in her future and in her family. I begin to better understand for the first time in my life what is meant that we must be as little children to enter the Kingdom of Heaven. And not just this child-like trust in the future and those around her, but also a child’s profound appreciation for little things and a child-like wonder for life, and an almost mystical gratitude for every small kindness and every small aspect of daily living. Several times each week now I take her to nearby Meadowlark Park. As we move along the winding paths she will exclaim over and over again about the beauty of a particular flower or leaf or how the sun glimmers on the lake or how its rays pierce the treetops. The childjoy she experiences is infectious and I find myself appreciating these incidentals in a much deeper way. As we wend along, she smiles up from her wheelchair, her child eyes dancing with delight, and I suddenly realize I need to add to that long litany of terms that describe Sharon–brilliant, tenacious, argumentative, irritating, compassionate, honest, forthright–a new adjective: adorable.

Of Drunkenness and Dementia

I am no expert on either dementia or intoxication, but watching Sharon go about her life each day happier, more tolerant, less argumentative, and full of gratitude, I wonder more and more what is our real self. We hear from an early age about “happy drunks” and “mean drunks,” and we read in the newspapers far too frequently that some man who has always acted decently and respectably gets drunk and throws a brick through a window or starts a fist fight or sexually molests a woman. Yet, there are those who no matter how drunk never do any of these things and one wonders if drunkenness is ever a legitimate defense for any crime. Perhaps being drunk merely allows us to be more of who we really are and just so perhaps dementia, rather than always diminishing who a person is (at least in the early and middle stages), actually allows a person to escape the pain and fears that have molded and damaged them for decades and enables them to pursue a life more in keeping with their true self.

I am Outis—Nobody

Eight long years. But unlike Odysseus, I cannot, dare not, will not pray that this journey of pain and wonder should end in its tenth year. At the same time, I fear becoming a monster of indifference and fury. It is so hard to always be attentive and kind, and it is even harder to always stay calm. We took a vacation to Europe this summer and we stayed with Brigita, a close Slovene friend, who has a typical European bathroom that includes a bidet. Despite several reminders, Sharon again accidentally uses the bidet instead of the toilet. She is mortified when I inform her. She pleads that she is sorry, so sorry, but it is the third time and I glare at her, and pointing my finger accusingly toward the porcelain fixture, I admonish her harshly. Perhaps, perhaps someday, I will forgive myself, forgive my haughty indignation and callous righteousness, but it will not be in this lifetime. I cry each time I reread this sentence and remember my unforgiveable reaction. Damn me. Damn my supercilious, judgmental, false superiority.

The trembling has increased and difficulty swallowing has begun. It is terrifying, and yet she presses on heedless of the impending storm that is becoming our life. Once so incredibly articulate, now straining each day to be understood. Too often the sentences tumble away in a mumbling mass of murmuring. And I strain against the days to slow them down, fearful of what inexorably is coming. Yet in darker moments, I want to pull that timeline faster to get it over with. Fearful, I have started to explore assisted living options. I have embarked on this side journey of exploration with trepidation and no sense of adventure. I know she must remain home to be happy and, being happy, she will remain herself longer and will live longer as well.

There are unexpected pleasures along this voyage. A year ago, I could never have imagined the pure joy I experience taking her trembling hands in mine and gently cutting her fingernails. I vaguely recall doing the same for my children when they were young and the feelings are similar, but the joy this time is restrained by the knowledge that while the children were on their way to greater independence, she is on her way to ever greater dependence. And watching our young Thomas tenderly tending to his mother’s food or patiently administering her daily medications, or our grandson taking her firmly by the hand to guide her to her seat, I nearly burst. I am doubtful I have ever witnessed anything that has ever made me weep and smile so much as these two boys doting on Sharon. Another unexpected pleasure has been serving as interpreter. Her language ability is worsening, but her desire to communicate and engage in conversation, especially with visitors, seems to have intensified. Her listeners are almost always patient, but the sentence fragments are hard to comprehend. But I know all her favorite stories from her past and can help her along as she repeats one to her listeners. And it is remarkable how little need there is for words after living with someone for almost 40 years: if she looks a certain way or makes a certain gesture or uses a certain bizarre term, more often than not I can figure out what she is trying to say or what she is asking for.

More frustrating, at least for me, is helping Sharon use Facetime or Skype to talk with people. I find it remarkable how effortlessly some people know how to talk to someone with dementia and how clueless others can be. Sharon’s cousin Frances and our Slovene friend Brigita excel at communicating with her because they intuitively understand that it cannot be a real conversation anymore. You don’t ask a person deep in dementia questions and expect a true back-and-forth dialogue. You can’t just ask inanely “How are you?” or “How is your day?” and then lamely remain silent waiting for a response! Instead, you must just keep talking, soothing her with your words, conjuring up old memories that bring a smile to her face and a sweet nodding of her head.

If There is No Hope, Still There is Love

It is a humbling reality to accept that the progression of this illness is inexorable. There is no denying it: resistance against the onslaught of this disease truly is futile. And yet we do brazenly laugh and do gratefully cherish each moment, each day, of fading memory and fading life. There is some deep wisdom in persisting in loving and caring, and in the ancient dirge: eat, drink and be merry, for tomorrow, oblivion. More than any other time in our four decades together, we now consciously draw from life’s marrow as much joy and love and time as we can. I am reminded of one of my favorite Chesterton quotes that he wrote in a far different context regarding the Romans, then on the verge of destruction by Hannibal: “Nothing remained but honor and the cold courage of despair.”

Trees and Other Things (December 2020)

Battered and barren, slammed against cast iron sky,
Ignored and forgotten,
Their dazzling leaves now a distant sorrow.
Still beautiful.
In a December fast fading.

She walks, head bowed and listing,
Uprooted,
Upright nevermore.
But still beautiful.
This December dying fast.

Crippling thoughts
Fracturing time,
Slammed against winter facts,
I whimper.
I fall.
The year ending and no new beginning.

An Unbroken Heart is a Lifeless Thing (February 2021)

“I really need to find a good Pad Thai recipe,” I mumbled to myself. Remarkably, Sharon overheard what I mumbled and far more surprisingly, she understood it clearly. “Oh gosh, that is the one thing I just don’t know,” she dolefully responded. I stifled a laugh and looked at her with wonder. Although she was once an incredible cook, she hasn’t cooked a meal since 2016. Her last effort, making a Syrian rice/pasta dish, was disastrous. But she has no memory at all of that last frustrating attempt, and I warmed with affection at the sweet earnestness of her desire to help and her even sweeter regret that Pad Thai was the one thing she didn’t know how to cook. Instead of a laugh, I reminded her of what a wonderful cook she is and softly kissed her forehead.

Our decade-long passage since the hijacking of Sharon’s mind somewhere around 2011, seems to be finally nearing its inexorable end as did Odysseus’s voyage so long ago. But unlike Odysseus’s adventure, our misadventure was never homeward bound. In truth, home became ever more distant as we ventured forth along the darkening byways of this journey.

In the Spring of 2020, just as COVID was digging its claws into our comfortably predictable living, Sharon’s illness seemed to also sink its teeth deeper into her unraveling mind. She had seemed to “plateau” throughout 2019, but then her ability to speak markedly declined. In the early mornings or when she is tired in the late afternoons and evenings her language is a soft, whispering gibberish. We strain to comprehend her language, but usually fail. Frustrating for all of us, but far more frustrating for her. Her frustration grows with each attempt, and the frustration just makes her speech less comprehensible.

And her short-term memory became all but nonexistent. She sits with our teenage son Thomas at the kitchen table for an hour and then turns to me minutes after he has left to ask me why she hadn’t seen Thomas all day. The same thing happened when our daughter came to visit for several months this summer: “No,” Sharon insisted, “I haven’t seen her for years” though they had conversed just a few minutes earlier.

Try to Remember the Kind of September…

The illness seemed to enter an even more disturbing phase around September. I had gotten used to asking her open-ended questions that would give her a greater sense of autonomy and independence: What do you want for breakfast? Where would you like to walk today? What would you like to watch on TV? But ominously the same answer started to comeback: “I don’t know.” Soon, even offering just two options became cruelly confusing. “Sharon, would you like a muffin or a yogurt for breakfast?” And the same, sad refrain: “I don’t know.”

In September we also bought our first new car since 2008. Back then, she had made the purchase all on her own, with absolutely no input from me. She researched what type of car we needed and she went to the dealership and haggled and bought what she wanted. This past September she did accompany me to the dealership, but she was uncertain where she was. When I chose a car, she seemed indifferent. When we drove the car home, she didn’t seem at first to notice the difference. When she saw it in our driveway she was perplexed. Indeed, each day for several weeks thereafter she would see the car and ask who owned it.

Yet her self-awareness sometimes still comes to the surface and it can cut like a knife. One day in early September she looked at me with tears in her eyes and spoke one of her last clear, introspective sentences: “I once had an amazing brain.” I held her tightly as her body shook and she wept uncontrollably, but I was at a loss for what to say to soothe her. I told Brigita about this incident a few days later and she did know what I should have said: “She may no longer have that magnificent brain, Joe, but she still has a far better heart than anyone else I know.”

That September was a time of half-spoken terror and wondrous joy. Sometimes in the night she would hear phantom people downstairs and ask me to get rid of them. Sometimes she would think people were in our bedroom and that would really upset her. Then one day, “I’m scared,” she whispered in bed. “Of what, my darling?” She answers with silence. I suspect the answer and ask: “Do you know where you are?” And the hoarse answer comes like a cry from hell: “No.” It scares me as much as it scares her. How can she not know where she is? “You are in your bedroom, sweetheart.” And then I wonder, a more frightening notion enters my mind so I dare to ask: “Do you know who I am?” She doesn’t answer, but she shakes her head no. There is fear and confusion in her eyes. I hold her hand and tell her I am her husband, Joe. She shakes her head “no” again more forcefully. I put my arms around her and tell her to try to relax. Five minutes later, she sits bolt upright in bed again. She again doesn’t know where she is and I remind her again. I then remind her again that I am her husband. This time she smiles. She moves closer and sighs deeply. I wrap her in my arms and all is well. A few minutes later she says again that she is scared and doesn’t know where she is.

I try to imagine what it must be like to not recognize what is most familiar. I think back to my teenage years and experimenting with LSD. I wonder if it is a similar sensation for Sharon now of unspeakable terror and preternatural joy. A feeling of being unstuck in time and place. Along with terrifying moments are others of sheer delight. As already mentioned, as Sharon’s cognitive abilities weaken, her sense of wonder sharpens. Every leaf, every petal, every grain of sand, is something to celebrate. She finds beauty everywhere and all creation sparkles with mystery and God’s love. For her, when secure, the world is a Blakean multiverse of joyous tumult. She cannot always express herself well, but one look at her face makes clear the joy she is experiencing. Many months ago she forgot forever the word “cloud,” but her apt substitute, calling clouds “pillows,” is now part of our family’s lexicon. And apart from learning a more descriptive term for clouds from her, I have also learned to be more grateful myself. Whenever I help Sharon bathe or use the toilet or get dressed or cut her nails or feed her breakfast, her unalterable response is “thank you.” If I offer her anything she wants, the response is always, “Yes, please.” While Sharon has always been a very polite and conscientious person, she has said thank you and please to me more these last few years than the last 40 years all together. And I find she has infected me with a spiritual madness: appreciating the blueness of the sky and coolness of a breeze, and catching myself saying thank you way too often. It has become a strange, wholesome addiction. And I wonder: do any of us ever say it enough? She never took life for granted, but now there is this sweet gratefulness that melts my heart every day.

She melts my heart in other ways as well. During one night, she got lost and confused at least four times going to the bathroom and I would get up out of bed each time and direct her to the right door. Later the next day, I told her I needed to go to the bathroom, but that I would be right back. She looked at me with concern and quickly stood up. Her arm stretched out and her finger pointing in the right direction, she helpfully and gently explained to me: “It’s just right over there.” My heart missed a beat and I stopped breathing lost in my love for her. She also started to wear as a necklace a gaudy rosary I had bought her in Argentina and insisted it was fashionable much to the embarrassment of my fashion-conscious teenage son. When I am outside gathering up the fallen leaves, she will start picking up small twigs and leaves and one by one place them in the waste container. Other than size, she increasingly reminds me of a two or three-year old girl. She started to take her chewable vitamins several times a day when no one was watching. Our then 8-year-old grandson David found the perfect solution for that problem: He filled the empty vitamin bottle with fruit snacks that she can now take all day long safely. The best self-medication plan ever.

Yet I still clung to hope that her longer-term memories would remain intact for many years to come, but as summer ended that feeble hope also began to vanish. September witnessed her relinquishment of her IPhone after mistaking the TV remote for her phone one time too often and, more to my liking, her avid watching of CNN subsided. As her birthday approached on September 10, I asked her what kind of cake she would like me to bake. She stared at me confused and worried and asked what kind of cake I thought she might like. I reminded her gently that she usually wanted me to make her a cheesecake and she smiled broadly and said that would be perfect. Then she asked what month it was and what day was she born. She had no clue as to her own age or birthdate. In September she even praised my baked pork chops. This was quite unprecedented and while I wish it indicated improved culinary skills on my part, I know it was just another warning sign of worse to come.

Autumnal Sorrows

By October 2020 it was with some relief and profound sorrow that I realized that there is no longer any great need for pseudonyms in writing about Sharon. Sharon’s remaining semblance of privacy is now deeply hidden in the narrowing passages of her being and she rarely now can access it. This third essay about our journey together is more difficult to write. We have left the halcyon shores of the Sirens and Lotus Eaters and are now waist deep in the River Lethe. When exactly I do not know, but that river’s rising tide will soon engulf her throat and then snuff out any light of consciousness from those bright, beautiful eyes.

November came and the taste of dead leaves and the cheerless meals of Thanksgiving were especially bittersweet. For the first time ever she looked at me during the daytime and did not know who I was. She looked around her with the sun still shining and did not know her own home. I knew for years that this moment was coming, but even so it took me by surprise and shook me to my core. I had rationalized the earlier episodes during the night as caused by exhaustion and sleep deprivation. I trembled to see those eyes that I loved look back at me first with confusion, then with fear. When she first turned to me as we drove into our driveway and declared this was not her home, a sharp breath caught in my throat. I was terrified. I looked into old, familiar eyes that did not know me. I heard my own familiar voice tremble with animal terror: “It’s me, Sharon. Your husband. I’m Joe.” Still no recognition. Just a plea for her to be left alone so she could go home. “But this is your house. This is our home. Together.” That terrified her more and she seemed on the verge of screaming for help. There are many silly Hollywood movies about Alzheimer’s, but perhaps the silliest and most insipid is “The Notebook.” Yet in that film there is one brief scene, when the wife stares at her husband and screams in sheer terror, that comes close to the reality many Alzheimer victims often feel.

Somehow, I managed to coax her to enter the house, but she was still terribly apprehensive. Then, as if arbitrarily inserted into a poorly written script, our dog Max waddled into the kitchen—canis ex machina—and I said desperately, “And here is your dog, Max.” And with that her face lit up and she hugged her dog and she was reassured that just maybe she was where she was supposed to be. So now, after suffering with dogs for over four decades, I finally have a legitimate reason to despise them: Sharon can still remember Max, who she has known for only three years, but her husband of almost 40 years is fading from her memories! I console myself with a harsh truth that is both sensible and fair: A woman can love all dogs, but no sane woman loves all men. And perhaps even more bizarrely, she has come to love some men she used to disdain, like my eldest brother Vito. For decades she (quite wisely) found him irksome and irresponsible, but now she adores him. Now, when desperate to calm her down, I call my brother (or Brigita or her cousin Frances) at any time of the day or night and it always has a calming effect on her. They have formed a formidable trinity of comfort for her.

Perhaps the hardest thing to get used to, however, is not that she forgets now who I am, but that she usually still knows exactly who I am and is desperate to cling to me. It is not at all like amnesia where the forgetting is more consistent and complete. Often now as she first clings to me, then runs from me, Springsteen’s haunting refrain, “One minute you’re here; next minute you’re gone,” echoes through my head. This constant forgetting then remembering is unnerving and frustrating and also, at times, quite humorous. One evening in early November I tried to help Sharon undress only to be straight-armed and told not to touch her. I backed off as she climbed into bed fully clothed and stared at me warily, as if to say who is this strange man intruding into my bedroom. I looked at her lost for what to say as she became more and more frightened and then imperiously asked me to leave the room. As I started to move toward the door, I said, “OK, I’m leaving now. Just remember that tomorrow you are going to speak with your cousin Frances on Skype.” She immediately perked up as if I had again mentioned Max and she forgot her fears and said, “Oh, Frances! That’s great. I always love talking to her.” I looked at her and shook my head theatrically: “So, Sharon, you can remember someone you haven’t seen in decades, but you can’t recall who your husband is?” Suddenly, she looked at me completely differently and started to laugh wildly and then asked me to help her undress.

Even funnier, another time when she had again forgotten who I was while we were taking a walk, I responded with the rote answer: “I’m your husband.” She stopped in her tracks, looked at me skeptically, and responded suspiciously: “How did that happen?” I nearly burst laughing. She may have dementia, but she is still wise enough to be incredulous that she ever did something as ridiculous as marry me! By late December I realized that my reminding her that I am her husband precipitates a bad reaction as often as a good one, so I stopped doing so. Instead, when she asks who I am, I simply say: I am the one who loves you and is taking care of you. This is almost always met with relief and warmth, and invariably a heartfelt thank you.

Speaking about the Unspeakable

There are certain things most of us just aren’t comfortable talking about, let alone doing. This will probably sound silly, but when I first learned I was to be a father, I was insufferably self-confident about my ability to raise children. I harbored only one serious fear, which turned out not to be very serious at all: changing diapers. The smell and mess were always something that I found extraordinarily offensive whenever I got too close to the changing area of various nieces and nephews. My olfactory glands were just too sensitive, I explained to myself, but I was determined not to shirk my responsibility. I hated, genuinely loathed, fathers who tried to avoid sharing parental duties, but I was also fearful that I would fail miserably in this role as diaper changer. I was startled, therefore, to discover that doing so for my own offspring was effortless. Yet this fear resurfaced a hundredfold as my wife lost control of her bowels and found it impossible to clean herself. I did not even want to think about handling such a situation. And yet, isn’t such an act of charity just another act of love? As with changing the diapers of my children, I find myself strangely at peace and joyful in helping. In a sense and at the risk of offending the myopically religious among us, I have come to think this service sacramentalized when done in love and with devotion.

But there are other unspeakables beyond mere bodily functions, especially that second greatest of unspeakables: death. In our sanitized world of shallow living and hollow lives, where we all strive to burnish our vanity, we hide our thoughts but not our selves from the inevitability of dying. Death lurks nearby for all of us and for those suffering Alzheimer’s, death is ever present, just out of reach, but never out of mind. It may be many years from now that death finally comes, but this illness is a stark, daily reminder that it is on its relentless way.

Yet there is another unspeakable even more appalling than death–and that is betrayal: to forsake that which is already forsaken by nature and society. We grow angry, we grow tired, we grow too busy with other matters to retain devotion to that which is now almost gone. We wallow in our victimhood like so many others in our decaying culture, and we lament the supposed unfairness of what has been thrust upon us. Instead of consoling the one who is suffering, we seek solace for our own misfortune. Like the men who fled from Golgotha, we run from what is hopeless when we realize we are truly helpless to help any longer. Yet, somehow, that defiant clutch of women remained, steadfast and devoted, at the foot of the cross, defying the inevitable. I pray I have the cold courage to join them as my wife sinks deeper into oblivion.

“The Watery Labyrinth”

Tending to Sharon is a joy. Exhausting and sometimes overwhelming, but ever a joy. Yet, I can see that on this voyage joy is ephemeral. What crushes me most is not the confusion and the agitation or even the fear. The worst is simply this: when she is just sitting, half-etherized at the table, staring vacantly into the distance. “Lethe, the river of oblivion rolls his watery labyrinth,” so wrote Milton centuries ago. And that great river relentlessly rolls on until it merges with Acheron. As her episodes of listlessness grow, I miss the old irritations: how she would do a whole load of laundry consisting of a single sock, how she would sneak candy into the grocery cart, how she would rehash over and over again the same tiresome stories from our past. These irritants are now precious jeweled memories that I will always cherish and that I sorely miss.

Last month, in one of her last fully lucid moments, she turned to me and said, “Joe, I know.” Puzzled, I ask for some clarity: “You know what, my darling?” She didn’t hesitate: “I know there is not much time left.” Her eyesight is terrible. This is a small grace. She cannot see the tears streaming down my face.

Friends and family ask if I’m considering putting her in a nursing home and my first impulse is to scream. Shut up. Just shut the hell up! But I don’t. I know they mean well. And far worse, I know that they possess that most unforgivable of all qualities: they are right. Someday. No matter what I prefer. No matter what she thinks she prefers. I will have to let her go. But for now, I know what is best: for her to stay at home; to be around people she at least sometimes recognizes and loves. The harsh, shameful truth is that I have always been far better as a parent than a spouse and so tending to Sharon now is unexpectedly joyful no matter how burdensome from time to time. But I have always had four tripwires, as our military likes to put it: when she truly forgets who we are, when she becomes consistently incontinent, when her speech is uniformly unintelligible, and when she becomes increasingly immobile. Those will be hard, difficult stages to handle for me and endure for her.

Crossing the River Lethe

I have run out of words as much as she has. They say that eventually her vocabulary will dwindle to six words. I pray those words will include “love” and “happy” and “family”. I pray she will know always somewhere deep in the recesses of her heart how much she is loved and how grateful everyone is to have known her. And how much she is already missed. She has become that ideal described in the Sermon on the Mount. She neither regrets the past nor is she anxious about the future. She lives now in an eternal present. She is like a lily of the field, neither spinning nor toiling, but glowing with an incandescent beauty. In many ways this journey, even if it lasts many years more, is nearing completion as her mind wanders off where I cannot follow. Soon she will be ensnared in the doldrums, as ancient sailors termed it: a listless, windless, hollow calmness. Already this past Christmas, the listlessness seemed to overwhelm. As the children tore open their gifts mirthfully and we laughed and sang through the day, Sharon mostly just sat among us but not with us, lost in her own mind.

It has, after all, always been a harsh irony that you don’t know if a heart is working right until it is broken. You don’t know how much you love someone–or not love them, I suppose–until you must care for them all day, every day, with hardly a moment to breathe. It is no sin to realize that you are incapable of such a task, but it is a great and frightening thing to feel powerless to serve better, to be upset that one cannot do better no matter how hard one tries. As she frantically escaped the house on a frigid January night a few weeks ago, barefooted and pajamaed, in desperate search of safety and self, I was again reminded of what a difficult, irritating, resilient, tenacious women she will always be. Today, I look at her sitting quietly beside me as I type this and again tears well in my foolish eyes.

A Day of Private Infamy (August 2021)

August 1, 2021. A date of little import in world affairs. A day of savage sorrow, forlorn failure—and exhilarating liberation—for me. Few days in my life have I ever looked forward to so eagerly. None had I ever dreaded more. My eagerness was and remains unseemly and obscene. My dread, overwhelming and persistent.

No more lies, no more “compassionate deceptions” as the experts label it: I will always be here. I will always keep you safe. Don’t worry. Nothing will make me leave you. Together always. Lies. All lies.

None of my imagined redlines and triggers even came. No immobility, no excessive incontinence. Just the daily grind of tending to Sharon and the daily fear for family. Her sleeplessness, her incoherence, her fits of rage, her daily bouts of tears, and her myriad fears just wore me down. My plan to have Brigita come and help tend to Sharon in order to keep her home and happy until the very end derailed years ago. This summer I finally placed ads online and I contacted half a dozen agencies, but no suitable caregiver could be found. Alone I could go on no longer.

The day comes and Thomas hugs her tightly and cries softly, uncontrollably. He more than anyone else has suffered through this slow-motion disassembling of a person, this remorseless disappearing of she who is his mother. We get in the car and Sharon is happy to go for a ride, but before long my sister and daughter are both telling me to pull over and stop the car. I’m shaking uncontrollably, I’m whimpering like a wounded animal, I’m wailing like a frightened baby. Sharon remains oblivious to it. I don’t pull the car over. If I’m not driving, I won’t be able to do this.

We arrive at the house. Simple and soothing. More compassionate deception as someone ushers Sharon aside. Sharon is so elated. She is hugging and kissing everyone. She is happy to be among people she “knows” and loves. I’m eager to leave. Probably too eager, but I don’t want Sharon to see us leave. An image of a grinning German guard directing traffic at the showers won’t fade. But it is not a fair image at all. Good people, genuinely kind people, work here. But I can’t shake the imagery. My mind reels. I think of Mice and Men. George, weeping, with the pistol nozzle placed snuggly to the back of Lennie’s head. This also is not a fair analogy. Not at all. But months later, it still haunts me.

I visit virtually every day. Each day is good, but each day I worry that it will be bad. I feel I am playing Russian roulette and that once I am truly relaxed, that chamber with the bullet will finally come around and Sharon will be upset, angry, terrified that I deserted her and left her among strangers. The first visit, and every visit since, we go for a long walk. She stops every few meters to hug and kiss and nuzzle. She is not sure who I am, but she is sure she is loved. I cannot listen to her gibberish 24 hours a day and not grow weary and even exasperated. But for an hour or two a day it is bearable, even enjoyable. And I know I have it so much easier than many who visit others here. With Sharon there is no anger, no sense of betrayal that I have deserted her. No weeping to get home again. This damnable disease affects different people differently and for many others each visit must be sheer hell. I am fortunate.

I remind myself constantly that this is all for the best, as if that phrase ever was a solace to anyone! I remind myself that I could not go on, exhausted and overwrought. I remind myself of the damage it was causing my son. There is a subtle, but profound, difference–one that I did not realize until almost too late–between watching a parent slowly die of some disease like cancer and watching a parent slowly disappear and change into someone different. Both are horribly painful, but the latter is infinitely more destructive of a child.

You read so many horror stories about people. About how relationships dissolve, how they mutate into something lethal and malignant. For years I was terrified I might become a monster. A monster of resentment, a monster of indifference. That I might grow tired of the burden and someday plot to hurt her, even get rid of her like in some pulp novel. You read so many stories of this sort, about how a person just can’t take it anymore.

But that never happens. Just the opposite. I yearn for more. More and more of her as she becomes less and less. I miss her. I miss clothing her, undressing her, feeding her, toileting her, walking with her, sleeping with her, listening to her incoherent babbling and her eerie, fairylike singing: a singsong voice, echoing dementedly the music of the universe. I miss her laugh and I miss her tears and I miss the smell of her mouth and her hugs and kisses and her confusion and her forgetfulness. I miss her joy in seeing a leaf and her awe while looking at a single cloud hanging in a sharp blue sky. I miss cutting her fingernails and cutting her toenails. I miss her waking me all through the night and I miss her insisting on us getting up at 4 or 5 many mornings. I miss shampooing her hair and shaving her and brushing her teeth and brushing her hair. I miss her clawing at my arm as I try to shop and I miss her frantically telling me to hush so they won’t find us and I miss her screaming, banging at the door to get out, and I miss her telling me she loves me and I miss her fervently telling perfect strangers that she loves them. The ending lines of a Robert Frost poem rumble every day through my mind: “I had not learned to let go with the hands, As still I have not learned to with the heart, And have no wish to with the heart–nor need, That I can see.”

I’m angry with everyone. Their well-meaning words infuriate me: It’s all for the best. It’s what Sharon would want. You need to think of Thomas first. You need to take care of yourself. Each comment makes me seethe. I fear I will pummel them with my fists if they don’t stop this drivel. I am wracked with guilt and I doubt that I am strong enough to visit her every day. I have already decided that for my own welfare I must stop visiting altogether. I just cannot bear it! I find myself walking in the middle of a street near our home. I’m raving incoherently and I’m unable to see. It’s broad daylight but my eyes are faltering and everywhere I turn is darkness. I’m full of guilt and regret and sorrow and impotence. I fumble for my cell phone and frantically call Brigita. I’m wailing again like a wounded animal. I cannot breathe; I can only scream. I hear my screaming somewhere in the distance, but I don’t understand the words I’m uttering. She tries to soothe the anguish. She says that this is my last chance to really enjoy my time with Sharon. No longer exhausted, no longer stressed tending to Sharon’s every need, Brigita says I can finally appreciate Sharon again and laugh with her again and never be frustrated with her again. “This is a chance few others ever get in life, Joe,” she explains. “This is a chance for you to fall in love with Sharon like you did 40 years ago. Let yourself fall in love with her! Fall in love with her, Joe.” And I do.

But even as I fall, I know much worse is coming. This will all change and I will grow tired, I will grow weary. And at some point she will stop wrapping me in her arms when she realizes it is me. She will stop being able to raise her arms altogether. She will someday stop smiling when she sees me. Someday she will not be able to smile at all. Some unknown day she will not notice my presence or anyone else’s. I fear her fading; I fear more my love for her fading. And even more I fear it will not fade.

It has been three weeks now and all is well. If not well, then better for all. She cries less. She laughs more. I can’t remember the last day I didn’t cry and laugh. I cry every day. I cry because she is so confused. I cry because she is so scared. I cry because she has rarely been happier. I cry because I pity her and I cry because I envy her. I cry that such a brilliant mind is now muffled and I cry because she is not who she is and I cry that she is more herself than ever before. The ebb and flow of my emotions are predictably unpredictable. I cannot get my bearings or steady my mind. I slip from one rush of sentiment to another just as brimming with feelings of conflicting origin. But I realize how much I have fallen in love again with her and that falling steadies me and keeps me almost sane.

Yes, yes, it is better now. Much better. For her, for the family, for me. But even now, even now, were it not for my darling son and my own debilitating physical exhaustion, I would bring her home though she does not even know it is her home anymore. Even though it would be the most heartless, selfish act of my life, I would still bring her home. For me. Just for me.

Napping with Dementia (July 2022)

Yesterday,

At the home,

Not her home,

I found her sleeping

Lying soft upon the mattress

Curled up fetally on her left side,

As almost always for 40 years past.

I had forgotten, utterly

the soft heaving of her breast,

I had forgotten, totally

that stone-calm face

hiding a hundred hurts and a thousand worries.

I lay down,

Wrapping my right arm about her,

Nuzzling my face into the back of her neck,

Pressing aging legs against withering ones,

As almost always before the great betrayal,

As almost always for the last 40 years.

Her breathing deepens,

Her heartbeat slows,

Her body, unforgetting, moves closer to mine.

At peace, she murmurs gently.

The unsteady heartbeat is mine,

The labored breathing is mine,

The wetness on the nape of her neck,

The wetness blurring my vision and burning my eyes

Is mine.

Journey’s End (October 2022)

On September 18, 2022 Sharon left my earthly care for the sweeter embrace of heaven. It has now been a full month since her dying, but I have not yet come to grips with her being gone, even though I am grateful that her horrific suffering is at an end. I have been chronicling our Alzheimer’s journey, both in prose and poetry, for over four years now. This eighth writing is the hardest, knowing she is truly now gone.

I was in Slovenia when I received a call from the hospice nurse at 2 AM on September 18. I dressed quickly and hurried to the airport, and was able to get on a flight home by 7 AM. But three hours before I landed, Sharon passed away. It is far too soon to even consider a time when I might stop cursing myself for not being with her in her last hours. My daughter rightly reminds me of how selfish I was to fly off to Slovenia and leave Sharon to die alone. It was inexcusable that I did so, though at the time I had lied to myself that Sharon still had years to live. In retrospect, it was a pathetic lie. Sharon was clearly nearing her end.

I sit here at my computer and my hands are trembling; I find it hard to breathe. I’ve known for over a decade this day would come, but I can’t yet imagine a world without Sharon. Her death has overwhelmed my heart and broken my spirit. I am wrapped in an unbreakable web of regrets. I can think of nothing good I did for her for 40 years without effort and nothing bad she ever did without even greater exertion. And I tire of all the praise; all the comforting words. When so many people tell you what a wonderful husband you are, you grudgingly accept that they can’t all be lying. But you never quite shake the suspicion that they all are fools. Does ten years of caregiving really wash away decades of failings?

I take from my wallet a scrap of paper on which Sharon had scribbled a poem. It’s dated Thursday, November 12, 2015, a time when her dementia was becoming too apparent to ignore. A few short lines I read over and over again: “Overwhelmed by the beauty and promise. I am full. Thank you, Lord.”

The burial was October 15 at Holy Cross Abbey in Berryville, Virginia, a monastery of the Cistercian Order. Sharon’s ashes are buried on a gently sloping hilltop, along the tree line, near a pasture, looking onto the distant mountains. October was her favorite month, autumn her favorite season, mountain and forest her favorite venue, and sacred places for quiet prayer her favorite sanctuary. Next September I will return to plant a dogwood tree, her favorite.

I have always disliked eulogies. I sometimes suspect they are the ultimate cancel culture. The real person drowns and disappears in an insipid sugary mix. Sharon deserves better than fluff and foam.

The Eulogy

Shortly after I began dating Sharon, I got a terrible sore throat. And as we all know, the only effective cure for a sore throat is to chew on raw garlic. So I was chewing on a clove of garlic one day when Sharon suddenly grabbed and kissed me. She did it so quickly that I didn’t have time to warn her that I was chewing garlic. I wanted to warn her because I had grudgingly accepted the sad truth that no matter how much women profess that they love you, they inevitably gag and turn away if you try to kiss them with garlic breath. But the thing about Sharon was that she didn’t gag at all. She didn’t even pull away. She just kept kissing me. This very prim, very prissy, very proper, young woman of 23 didn’t seem to care at all how gross my breath was. And I could feel myself literally, physically, falling for her.

Then a few weeks later, we were finally realizing that we would soon need to leave each other, Sharon for Ethiopia, me for Egypt. We were both so sad that I suggested we take a long walk to cheer ourselves up. So just as the sun was setting one evening, we walked across Key Bridge, and to make the walk even nicer, I took out my old edition of some Edna St. Vincent Millay poems and started reading to her as we walked along. One poem particularly was called Interim. She seemed to be enjoying it, but then I got to the verse, “I had you and I have you now no more.” I glanced at her and tears were silently streaming down her face. As we continued our walk, she clung more tightly to my arm and my heart melted even more.

And then there is the subject of children. One of our first dates was babysitting for the infant son of our Foreign Service friends, Mary and Dick Norland. A very cheap and weird date, but I think it was Sharon’s favorite date ever. And then just before we left for foreign lands, two of my nephews, Adam and Justin, came to visit, and Sharon just adored them—and believe me my nephews are the furthest thing from adorable. It was incomprehensible that she adored them and I became completely enthralled with her. Garlic, poetry, children. What else was there to do but spend my life with her?

My wife was brilliant. She was beautiful. She was extraordinarily kind and generous. Whether it was the destitute children of Manila, or the trafficked women of Cambodia, or the Roma/gypsies in Slovenia, Sharon always sided with those in need and took care of them. Sharon was the most loving person I ever knew, but it’s not just her kindness–or brilliance–that defines her. In our whole life together, we only got angry with each one or two, or at most three million times. So it’s not too surprising that we sometimes found each other irksome. Yet many of those traits that I found most irritating, ironically, I now miss the most.

Sharon was without pretense. One of the first things that attracted me to her was her bizarre inability to flirt. At all. She simply always was who she was. I had never met such a woman. There are women, as the old cliché goes, who light up any room they enter. That wasn’t our Sharon. If she were in a good mood, she could set a room on fire with her glow. But if she was in a bad mood, you knew it. I have visited caves that felt less gloomy than a room where she was unhappy. For a long time, I saw this as a character flaw, but over the decades I came to see it as wonderful because you never had to wonder what Sharon was thinking or feeling. You always knew where you stood with her. In this world of so much contrived affection and fabricated happiness, Sharon was something refreshingly rare and genuine.

One Christmas–we still laugh about it–one of the gifts I gave her was a DVD of what I thought was one of her favorite movies. She unwrapped it, looked at me incredulously, and said “I hate this movie!” On Christmas morning. Who does that? So infuriating. And so reassuring. Because when she said she loved you or that she was proud of you or that she would never leave you, you knew it wasn’t just words.

She could also be critical of people. Sometimes she could be very tough, but never as tough as she was on herself. She rarely felt she was good enough, even though she far exceeded everyone else in almost every category of life. She tried damn hard to be perfect—and she nearly was. The most interesting thing about this trait was that while she could criticize and complain about most anything, she never could be cruel. She never could neglect anyone—even those who didn’t like her. Unlike most of us, she never experienced schadenfreude. And if she did criticize you, it didn’t mean she didn’t like you. In fact, there was something of a direct correlation between how much she criticized someone and how much she loved them. So not surprisingly, those she loved the most, her family especially, came under greater criticism. But her love, her devotion, her sacrifice for family, was endless and ungrudging.

And at the same time, she was ferocious in defending those she loved. Even me. I remember once, after giving a speech in the Philippines, a Texas politician in the audience came up to me angrily because she felt my speech had been unpatriotic. I just started to laugh, but Sharon flew into a rage and I literally had to restrain her. Her outburst caused me some trouble later since I was being nominated for an ambassadorial position, but it was well worth it. Such violent expressions of devotion are rare among diplomats. I was never more proud; I never felt more loved.

Sharon also had a strong sense of right and wrong. Another of our favorite family stories is about when we visited the Sistine Chapel, and a woman in the crowd started taking flash photography. Everyone around the woman was upset, but only Sharon spoke up and told her to stop. The woman, pretending not to understand English, responded in French. Without skipping a beat, Sharon started to scold the woman in fluent, violent French. It was wonderful to behold. I used to tell her that it is of no use to wage war against every injustice, and it is foolish to never be satisfied with how things are. We should just accept life as it is and enjoy it. To which she would 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.

If there remains one thing about Sharon I never could quite understand—and it is a terrible flaw all three of her children and her grandson share—it is her irrational affection for dogs. Dogs were an emotional sanctuary for her. They always calmed her and made her feel better. Perhaps because they are such ridiculous creatures, she rarely yelled at them and never criticized them.

Then the last time I visited Sharon was the Tuesday before she passed away. I stopped by for an hour to help her eat some brownies I had baked. She could barely walk at that point, but as ever, she was determined to get up. I took her in my arms and gently lifted her from the wheelchair. She stumbled forward into me and hugged me. Then, she patted my back. Weak though she was, her patting of my back was strong and firm. As if she were trying to console me. She had never done that before, not even once in our 42 years together. And it was only later, as I was driving away in my car, I realized that she hadn’t been patting me at all. It wasn’t patting; it was petting. And I laughed to realize that after more than 40 years of trying, I had finally gained canine status! I had always teased her that if reincarnation were a real thing, I would want to come back as her dog in my next lifetime. I’m glad I don’t have to do that now.

We love people for who they are; we love people despite who they are. We may like some things about them and dislike other things, but we love them in the entirety. This last year was a horrible time for Sharon after I placed her in a nursing home. But those years before she went into the nursing home, despite being fraught with fear and sorrow, were the very best years of our life. We enjoyed every day together: we never fought, we barely quarreled, we savored each walk and every car ride, we said thank you to each other more in those years than in the previous three decades, we said please even more often and we held hands and kissed every day, all day. I could finally make her laugh and I finally made her happy.

But those years weren’t enough. You hear over and over again how people wish they had just seen the person they love one more time, or done this or that for her before she died. But I had that for nearly a decade. I knew she was dying and I tried to make the most of it. But ever since she died that same feeling is still there; that same regret, that same wish that I just need one more day, one more chance to tell her I love her, one more chance to kiss her, to thank her, to say good bye to her. I don’t think it is ever enough; there is never enough time.

And I don’t want ever to stop missing her; I don’t want ever to be so happy that I would ever forget missing her. Not missing her would leave me empty. I know I must move on, but I don’t ever have to let go. And every day now, many times each day, I’m left alone with those words of that Edna St. Vincent Millay poem: “I had you and I have you now no more.”

Sometimes (August 2023)

sometimes,

i am unsure how to survive surviving.

i miss the chance to be better,

better, kinder, truer, more patient, more loving

more selfless.

And i am so happy these days,

so miserably, wonderfully happy.

i have so much happiness

and a surfeit of blessings:

stalwart friends and steadfast family;

new life and new beginnings.

but sometimes

i yearn to leave,

to go fast, to go far,

far away.

to hide my face,

to hide my shame,

to hide myself from this world.

happiness is my mark of Cain,

wrought from deceit, devotion, and much regret.

a mark that both keeps me breathing and weighs me down.

my happiness is a blemish on my sorrow,

a gaping hole in my soul and a salve for my undeserving heart.

a grace so unwarranted,

a blessing so generous,

i bow in shame and hapless gratitude.

One Year Later (September 2023)

Don’t call, don’t write, don’t even think of me.

I want to be alone.

Your soft prayers suffocate,

Your kind thoughts flay my soul.

I need to be alone.

I know my failings, my cruelties, my impatience.

My rationalizations and equivocations.

I know, I know, and I don’t want to escape my knowing.

Alone I need to be.

To atone, remembering her curled up reading a pulp romance,

To atone, remembering her laboring over a crossword puzzle,

To atone, listening to her unearthly screams and cherishing her laugh,

Alone watching her pray and making tea and weeping unceasingly.

I need to be alone.

So stop.

Please stop.

Praise burdens me.

Each compliment shames me.

Leave me alone.

I don’t want her gone, though she has been gone for years now.

Perhaps she was never really here.

Never really mine.

I miss her sadness.

I miss her fury.

I miss her unreasonableness and her endless complaining.

I miss her warmth and her sudden coldness,

her despair, her depression, her faith, her hope, her love.

I want to be alone.

Just leave me to atone.

Alone.

Leaves and Other Things

As I walk to your gravesite,

nearing the mountain ridge,

there where field and forest meet,

the leaves softly fall all about me,

showering me with gentle memories of you.

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The featured image is courtesy of Pixabay.