So much and so little has transpired since I last wrote a year ago. My wife is becoming as changeful and changeless as the sea, and yet I watch her go about her life each day happier, more tolerant, less argumentative, and full of gratitude.
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 by everyone else. 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 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 Kay indeed 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, Alzheimer patients seek a miracle on the order of Lazarus leaving his tomb. Even 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. “Adam, 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. But 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: “Kay, 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. 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, Kay 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 Kay 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 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. 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 cruel—to keep reminding an Alzheimer victim.
“Forgetful of their Homeward Way”
One can fault Odysseus for forcibly dragging his men away from the bliss of the lotus eaters; they were distraught and tearful and yearned to stay where they had been forever. 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, sensing that they no longer yearn for those things they can no longer have. And I see in Kay 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 Kay’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 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, even ironically, 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 Kay—brilliant, tenacious, argumentative, compassionate, honest, forthright—a new adjective: adorable.
Of Drunkenness and Dementia
I am no expert on either dementia or drunkenness, but watching Kay 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. And 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 an old friend, who has a typical European bathroom that includes a bidet. Despite several reminders, Kay 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.
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 and a fluent speaker of half a dozen languages, 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 drag 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 son 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 Kay. 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.
If There is No Hope, Still There is Love
This essay begins with the humbling reality that the progression of this illness is inexorable and resistance futile. 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 quotations that he wrote in a far different context regarding the Romans, then on the verge of destruction: “Nothing remained but honor and the cold courage of despair.”
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The featured image is “The Storm” (1880) by Pierre Auguste Cot (1837-1883), courtesy of Wikimedia Commons.