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.
“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.
By my reckoning, this hijacking of her mind began in 2012 and now, like Odysseus, our decade-long passage seems to be finally nearing its inexorable end. But unlike Odysseus, 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 the Wuhan virus 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, but 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 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 an old Slovene friend 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.”
September is 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, 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 mentioned in an earlier essay, 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 two 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 finger pointing in the right direction, she helpfully and gently explained to me: “It’s just right over there.” She also started to wear as a necklace a gaudy rosary I had bought her 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 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 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.
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 these essays. 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 to the outer fringes of sanity and the inner recesses of her disappearing mind is the most 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. (The other two essays I penned in this journal are under the pseudonym Adam Philips: “Falling in Like: An Alzheimer Odyssey” and “Among the Lotus Eaters: An Alzheimer Odyssey Continued.”)
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 a familiar voice that trembled 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 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 4 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 inscrutable and irresponsible, but now she adores him. Now, when desperate to calm her down, I call my brother at any time of the day or night, and it always has a calming effect on 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 Frances (her cousin) 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 three 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 have stopped doing so. Instead, when she asks who I am, I simply say I am the one who is taking care of her. This is almost always met with relief and warmth, and usually 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 her in this way. 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, perhaps 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 doesn’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. But 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 truth is that I have always been far better as a parent than a spouse and so tending to Sharon now is unexpectedly bearable 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 doubt there will be a fourth essay written about our Alzheimer’s journey. 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 woman 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.
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