The Strange Gift of Alzheimer’s:
Lessons from my dying father
Alzheimer’s Disease is often called “the long goodbye.” For my father, a professor with two doctorate degrees and an intense commitment to the Kingdom of God, it was the most painful possible way to die — a decade-long farewell to his mind, his work, and his deep sense of who he was as a Christian, missionary, father, and husband. And at age 75, he succumbed to the terrible disease.
While my father was dying of Alzheimer’s he underlined seven Bibles — all 8000 pages — every verse neatly underlined with a pen and ruler; every jot and tiddle. This was his final act as dementia slowly carted off the memories of who he was. It occupied his final four years — the lines in each Bible growing slightly more squiggly — as his disease slowly and inexorably turned off the lights.
After he died, his wife mailed me a box weighing over 35 pounds. In it were seven Bibles — each carefully underlined. As I began to read through them, an urge to tell this story began growing in me — before I too forget. .
I loved to watch him do this: his big fingers, wreathed with veins, slowly and methodically drawing the pen across the sacred lines of scripture; his leathery face peering above the text, like a doctor’s, intent upon his surgery. This devotion to a text which he had loved for six decades and meticulously exegeted with an Indian Ink pen (but could now barely understand) puzzled and inspired me.
I once hovered over him with my camera, as if trying to capture something my own eyes might miss. And I was struck again by how childlike he had become: he was the perfect subject, completely unaware of my presence as he carefully placed his ruler over the text and underlined — -again and again and again — like a child so absorbed in their own imaginary land that I and my grown-up world had simply faded away. The only response he once made to me was the puzzled question: “What is that clicking sound?”
Watching my father’s face through the camera lens — leathery, oblivious, focused, child-like yet ancient — recalled to mind the verse from Psalm 119: 83: “I have become like a leather flask in the smoke, but I have not forgotten your statutes.” This has become for me, the enduring image of my father. (There is another image of him baptizing hippies in the Indian Ocean — but I will return to that later).
Tracing Alzheimer’s through Seven Bibles.
I cannot imagine my father’s final years without the strange comfort his Bibles brought him. He is like the psalmist who said: “If my delight had not been in your law, I should have perished in my affliction.” (119. 92). They anchored him. They became his mentors, his lantern, his comfort, his conduit to God.
After he died, I started reading through his Bibles chronologically, and began to notice small changes from Bible to Bible. Choosing just one passage from 1 Thessalonians 5, I noticed the following changes, beginning with his pre-Alzheimer’s study Bible:
Every page of his New Testament looks like this: filled with incredibly neat annotations from Bible commentaries, as well as from his Greek New Testament. He could quite easily spend a few hours meditating on a single verse from a Pauline epistle.
But here is a copy of the same passage during the early onset of Alzheimer’s:
What typifies the change here is his reliance on a simple numerical system to help his fading memory track with what has just been read. Here he has listed Paul’s final 17 instructions to the church in Thessaloniki; he also begins circling key words in each passage as another pneumonic device.
The next noticeable change was his shift to a large-print Bible, in which no further annotations can be seen; just a simple methodical underlining of every line of scripture. Here is 1 Thessalonians 5 again:
This methodical method continues for his next four Bibles. But in his seventh Bible, I noticed he no longer bothered with the ruler. His underlining becomes more haphazard, sometimes “crashing” through the border between margins, and sometimes just continuing long after the text has ended, as can be seen below:
There is something strange about this, as if my Father was aware that St.Paul’s concluding blessing: “The grace of the Lord Jesus Christ be with you,” was somehow being blocked in his current condition. Or perhaps he realized that Paul was speaking in the present continuous tense, as rendered in Young’s Literal Translation: “the grace of our Lord Jesus Christ [is] with you! Amen.” (my emphasis). Perhaps he was trying to capture this present continuous tense with his continuous underlining….a sort of ellipses which brought him comfort: may the grace of the Lord Jesus Christ continue to be with you…line after line after line.
Alzheimer’s and The Weight of Glory
The image of my father’s hands doggedly travelling across miles of text blurred from dementia, reminds me of C.S. Lewis’ famous sermon, “The Weight of Glory,” preached during the darkest days of 1941. In it Lewis reminds us that as image bearers of God we carry a Weight of Glory on our fragile shoulders which should revolutionize the way we treat each other:
There are no ordinary people. You have never talked to a mere mortal. Nations, cultures, arts, civilizations — these are mortal, and their life is to ours as the life of a gnat. But it is immortals whom we joke with, work with, marry, snub and exploit — immortal horrors or everlasting splendors.
But we forget.
And the image of my father as a “leather flask in the smoke” reminds me again: my father carried around on his cracked being a Weight of Glory too heavy to see. But somehow his weakness helped make it a little more visible.
For three years I watched him die, flying out from Kansas to Los Angeles every three months to be with him. And observing his long and painful struggle, I began to see more and more of this strange “Weight” resting on him. It’s a strange thing, this Weight of Glory — resting invisibly on our shoulders. It is said that Alzheimer’s destroys the person, leaving blank eyes staring out at a world they no longer recognize.
But perhaps our concept of personhood is too infected by Descarte’s “thinking man” (I think therefore I am)for us to recognize this Weight. In Christian ontology, God remembers, therefore I am. Our being is not contingent upon our thinking ability (or on our memories) but upon God’s memory of us. And it is His memory of us which gives us this Weight: “Before I formed you in the womb I knew you, And before you were born I consecrated you” — Jeremiah 1.5
Dementia of the Soul: Four Signs
What I began to see during the last painful years of my father’s life was a fundamental truth about Alzheimer’s Disease not found in any medical or self-help book on the subject: that Alzheimer’s can be a vivid physical reminder of a far deeper spiritual disease we all wrestle with: a dementia of the soul; a chronic and pervasive forgetfulness of who we are as Image Bearers of Christ. It is a deep, ontological forgetfulness which dulls our ability to think beyond what we can see, and strangles our attempts to function as eternal beings.
I would like to reflect on four ways in which my father’s struggle with Alzheimer’s reminds me of the Weight of Glory resting on each of us — and how our spiritual dementia tries to snuff this reality out.
I. Forgetting Whose We Are
Dad: “Hey, I’m married! what are you doing in my bed?
Karen: “I’m your wife! I belong here.”
During the later stages of my dad’s Alzheimer’s he once sternly rebuked his wife, Karen, for trying to get into his bed: “Hey, I’m married, you can’t get into my bed,” he reprimanded her. “Who do you think you are?” “I’m your wife, Karen” she would simply reply, “and this is where I belong!” As sad as this bedtime episode may have been for her, it was also a strange comfort as well, knowing that her husband, in his most unguarded moments, was revealing to her his gift of utter fidelity.
I began to see how Karen became the bearer of my dad’s fading ontological memories — -memories about who he was: a husband; a father; a faithful servant of God. She had long since given up trying to correct his wacked-out sense of geography or time or taste. But she stood guard diligently against the panic created by his fading sense of who he was. She knew he was still her faithful husband — a resolve which helped neutralize his outbursts of anger, violence, and panic towards her. She bore the memory of who he was — present continuous tense!
In Forgetting Whose We Are, David Keck argues that Alzheimer’s is a “theological disease” because it reminds us of our spiritual dementia, a dementia in which our identities are rooted in who we are as autonomous beings, rather than in “whose we are” as image-bearers of God. We ask “Who am I?” rather than “Whose am I?” We boast of knowing God, rather than of Him knowing us. In his letter to the Galatians, St. Paul corrects this subjective bias by reminding us that “now that you have come to know God, or rather to be known by him, how can you turn back again to the weak and worthless elementary principles of the world?” (4.9).
Two years before he died I asked Karen the dreaded question: when would it all become too much for her. What would be the breaking point? When would she need to give up on her full-time care for him and place him in a retirement home? (They lived in California, and I had been flying out just every 3 months to give her a weekend off). She paused before answering: “Two things,” she said. “When he becomes violent towards me, and when he can no longer control his bowels.”
A year later, both came true. Yet, with the help of just 6-hours of weekly hired help, she had persisted in taking care of him. On my next visit I asked her why:
“Has he been violent?” She said he had.
“Can he still use the bathroom?” She said he cannot.
“Why then have you not put him in a retirement home?” She smiled at the question, knowing that her breaking point had long since passed. And yet, I couldn’t help noticing how happy and vibrant she looked compared to a year ago. “He is my husband.” This was the only “excuse” she seemed able to muster. She admitted that something supernatural had happened to her. And I saw then the remarkable role she bore as Bearer of his memories. He may have forgotten who he was, but she wouldn’t.
In Dementia: Living in the Memories of God, John Swinton argues compellingly against a common belief that we are the sum of our memories, and that when we remember nothing we are somehow deprived of our person-hood. No, he argues, our value is underwritten by God’s memory of us — -not ours of him! Like Karen, He too is the “keeper” of our memories.
Jesus’ most frightening parable highlights our tragic (or willful) tendency to forget: the parable of the unforgiving servant, who, after being forgiven by his master of an incalculable debt of millions of dollars, immediately went out and seized a fellow debtor by the throat, threatening to throw him in jail if he did not pay back the few hundred dollars he owed him.
We struggle to forgive only because we keep forgetting the enormity of the debt our Lord has paid on our behalf. We struggle with self-image because we keep forgetting who we really are in Christ. And we struggle to love our enemies because we forget that they, too, are created in the image of God — however smudged that image may have become. We keep forgetting, as David Keck puts it, “whose we are.”
This is why neglecting a loved one with Alzheimer’s is so tragic. Thinking that because our beloved no longer knows and recognizes us, time spent with them may be wasted. This is tragic for two reasons: one spiritual and the other emotional.
Even if a beloved can no longer cognitively recognize us, they still retain deep emotional memories of who we are. This has been documented in experiments done with Alzheimer’s patients testing their capacity to experience emotions for something which has long been cognitively forgotten A loved one can still trigger emotional happiness in a beloved who may no longer remember who they are(Guzman-Velez, Feinstein, Tranel, 2014).
II. Forgetting What to Do
“What Can I Do?…There’s Nothing to Do!”
My father became a Christian in a South African boarding school at the age of 12, after his best friend presented to him a list of strict “do’s and don’ts” for followers of Christ. Whereas many would be turned off by such a list, my dad was invigorated by it. Duty, not passion, convinced him of Truth. And a life without sacrifice and rigor had no appeal to him.
And so from him, I learned the way of duty, without which a meaningful life would be impossible. Nothing could be achieved, he believed, without the making of vows. And to this end he lived his life, throwing all he had into planting churches, baptizing hippies in the Indian Ocean (it was the early 70’s, and the Jesus Movement had just caught fire in South Africa),earning two doctorate degrees, and finally, underlining 7 Bibles word- for- word.
When his second dissertation was accepted at Fuller Seminary in California, we wrote on his cake: “Congratulations Dr. Dr. Paul B. Watney!” And after two decades of planting churches and running a small Bible College in the slums of Cape Town, he sold all his possessions to fund his doctorate degrees, immigrated to America, and became a professor of Theology and Missions for the next two decades — -never, however, intending to retire. But at age 65 he began forgetting things: returning papers he had graded, lectures he had given, and the names students he had long known. And very reluctantly, he conceded that he had to do what he always vowed he never would: retire.
The very concept of retirement was always anathema to my dad. He was old school when it came to work. Like St. Paul, he felt his life on earth was a calling, a vocation, a race: one he was expected to run until death stopped him. He never had a hobby. His almost compulsive sense of duty compelled him to always be on the lookout for something to do; someone to help; something to pray about; someone to share the Gospel with; some dishes to wash; some Bible to study.
Relaxing was tough for him. Even when watching TV with the family he would often stand — -as if ready to bolt as soon as duty called. When he heard my mom’s car pull into the driveway from the grocery store, he would drop whatever he was doing and bolt out to help her. Whenever the doorbell rang he would bolt out of his chair, bed (or even the shower if he could hear), and admit whatever guest was there. And whenever a lady entered a room, he would be the first to bolt up from his chair and offer it to her. It was duty. And being off-duty was anathema.
And so it was that Alzheimer’s was the cruelest way for my dad to die: the body still strong and capable — but the mind dying — very slowly — -from age 65 till its merciful end at age 77. It was OK for the first few years: even though retired as a professor, he still got up early, dressed professionally, and put in 8 hours as a volunteer at Christian missions organization — doing whatever was asked of him. But his wife later told me the missions organization had kindly allowed Paul to keep his office even though he was clearly unable to accomplish anything of value for them. She paid a small office rental fee, and they allowed him to keep his office — and, temporarily, his sanity.
But the first crisis came when he got hopelessly lost one day on his short half-mile walk back home. Frantically, Karen got in her car and drove around the neighborhood for over an hour before finding him, utterly confused, about 2 miles away from home. This became a regular occurrence, and soon his office days were over, and he began “working” at home.
But increasingly he would wander around his house as if trying to escape from a maze, plaintively asking no one in particular: “What can I do?…There’s nothing to do!” Urging him to relax was as futile as rebuking a dog for barking when the doorbell rung. Duty was hardwired into him. “Just relax Pa!” I would urge again. “These are your salad days: take it easy; read; do your gardening; don’t you have a hobby?”
But relaxing for Pa just took too much effort. And I remembered that he had never had time for hobbies. He was an old-time Pentecostal, and the return of Christ was always imminent. Hobbies were too frivolous when so much was at stake and so much hung between heaven and hell. When I tried to watch the Bob Newhart Show with him (which had always tickled his funny bone), he could not sit still for more than a few minutes before bouncing off the couch in a panic about all he had to get done. “There’s nothing to do Pa!” I remonstrated. And then realized that was exactly his problem!
And so began a new regimen for this duty-bound man. I watched him as he slowly but doggedly stalked around the house doing his work: putting chairs on beds, clothes on dining-room tables, books in the kitchen sink, and silver-ware in the flower beds. And we, we stealthily followed behind him, unobtrusively undoing the chaos he left behind. And he never seemed to notice that his work had been undone, as he tirelessly re-did the work which we had just unraveled. Fortunately he tired quickly, and we would persuade him to lie down and take a nap. But Dad’s naps were never long. As exhausted as he might look, he would bounce out of bed 5 minutes later, often urgently announcing that he needed to get his work done. And then we would hear his plaintive mantra again: “There’s nothing to do!”
And this mantra was very different from the “I’m bored” mantra of a child, who expects you to find him something fun to do, and could be easily satisfied with some new game or toy. Dad’s yearning “to do” could never be satisfied with mere games or TV shows. It was, I believe, a deep spiritual yearning to continue doing the work of the Kingdom which his disease had deprived of; a yearning to continue to obey Christ’s injunction to work diligently while it was still day; a yearning to hear Christ say to him “Well done, thou good and faithful servant” on his return — a return which was always imminent according to his Pentecostal theology.
III. Forgetting Where Home Is
“I want to Go Home…please God…I Want to Go Home!”
A wonderful tradition I had when flying out to visit my dad in Pasadena, was taking him for a walk, with my brother Garth, to Pronto’s Donuts, a hole-in-the-wall donut shop we had often frequented together in earlier years. He loved these times, but August 7th, 2010 was our last such visit. He had begun to experience what is referred to as “sunset panic” — a sudden desire to “go home” when the light begins to fade. He had just wolfed down his last donut. It was 8 pm.
And suddenly he bolted for the door before my brother and I could stop him, into the heavy traffic on Lake avenue, causing cars to screech to a halt. We dashed out to get him and quickly guided him back to the sidewalk. But he just as suddenly wrenched himself free of us and began stalking determinedly away, in the opposite direction of home. We attempted to coax him in the opposite direction, but he would have none of it. We allowed him to walk freely for a while before we had had enough and finally managed to manhandle him back in the right direction.
When we arrived back home he was exhausted, limping, and whimpering like a child. But on entering his front yard he broke away from us again, indignantly shouting, “That’s not where I’m going!” And away he stalked again, in the opposite direction. When we finally managed to force him back home, he persistently tried to escape again, rattling the locked gate of his back yard persistently and emphatically. When he was finally exhausted, he sat down in a depressed funk, as my brother and I coolly sat reading sections of the LA Times.
It was then that I noticed his chin quivering, and his chest heaving in silent sobs. I went over to him, took his arm, and led him back inside. We sat together on the couch, and he began sharing with me his distress: “Oh God, O God, Please help me! Please God! Please help me. I don’t know what to do. I want to go home! Please God, I want to go home!”
Dad spent much of his last days wandering around his house from room to room, sometimes praying earnestly, sometimes whimpering sorrowfully, sometimes just humming to himself — like a child trying to comfort himself when no one answers his cries in the night, and sometimes speaking in tongues. But one of his most common refrains was his cry for home. His world simply made no sense to him.
Alzheimer’s has often been described as a slow regression back to childhood; a stripping away in reverse chronological order of all the “territorial” skills we spent so long acquiring: locating food and comfort, recognizing, smiling, walking, talking, reasoning, bargaining, manipulating, loving, and building alliances. All these are highly developed territorial skills honed far above those of any other species. And when Alzheimer’s slowly strips these away we once again become like infants, crying out in terror in a strange new world we can no longer control. We have forgotten how to “mark our territory,” and it bewilders and scares us.
One of the saddest yet funniest expressions my father attempting to “mark his territory” was the day we were visiting the home of some relatives, and we suddenly heard a high-pitched scream coming from the living room adjacent to us. We all rushed into the room to find Pa standing over a beautiful white piano with his pants down around his ankles, peeing over the black and white keys.
The poor lady of the house, who had screamed, was standing in the opposite corner, white and rigid in shock. Pa, of course, was quite oblivious to the horrifying scenario he had created. (Perhaps the white keys had reminded him of the porcelain in a bathroom; perhaps some deeper territorial instinct had suddenly kicked in). Yet it remains one of the funniest, saddest, and most poignant memories I have of my father, and a vivid reminder of how increasingly strange this world had become to him.
IV. Forgetting that our Strength lies in Weakness
One of my favorite memories of the late Pope John Paul II was this one: stricken with Parkinson’s Disease — hands trembling so badly he could no longer hold the Host; drooling, voice cracking — -yet still doggedly celebrating the Mass before millions from St. Peter’s Cathedral. “Why allow millions to see such frailty?” some would ask.
“Why not pass this duty on to a more able bishop?” And I think he would have answered that there is no better duty than to celebrate our weakness in the Mass. I believe this most public display of weakness beautifully captures the essence of Christianity as expressed in St. Paul’s Epistle to the Philippians:
Have this mind among yourselves, which is yours in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but emptied himself, by taking the form of a servant, being born in the likeness of men. And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross (ESV. 2.5–8).
No other religion celebrates weakness, pain, and suffering, the way Christianity does — as symbolized in its central image, the Cross. And perhaps no other disease captures this weakness quite as succinctly as does Alzheimer’s.
One of my favorite memories of my dad was listening to him say Grace just a few months before he died: he closes his eyes and furrows his brow, and then, from his mouth, an avalanche of deeply earnest words begin to flow, void of cognition yet filled with meaning:
“Oh God, we, yes, aah Jesus, thank you Lord, we pray, oh God, yes, and in YOUR name, oh God, and we praise you Father, in YOUR name Jesus, we love you, and oh God…in JESUS name AMEN!”
And as he prayed, his grip on my hand grew and grew till all the blood had been squeezed from my fingertips. And then, as he ended the prayer, he slowly released me. And a rare look of peace was on his face.
I wish he could have kept that look on his face. But it only appeared during those brief moments when praying or singing old Pentecostal songs, or when his wife walked into the room. But soon the old call to duty would again trigger panic in him, and up he would bolt again, crying out at all he still had to do; raging, like Dylan Thomas the great Welsh poet, against the dying of the light. This last lesson (strength in weakness)was perhaps the toughest of all for him to learn. His resolute sense of duty which had served him so well all his life now seemed to be a terrible impediment to his peace.
Thomas Merton once wrote that “happiness consists in finding out precisely what the ‘one necessary’ thing may be, in our lives, and in gladly relinquishing all the rest.” I think my dad was often a Martha, frantically (and faithfully) serving God whenever and wherever possible. But he struggled in his last years to simply sit at Christ’s feet, like Mary, and enjoy His presence — the “one necessary thing.” Perhaps the “last necessary thing” for him.
But I could never convince him to become a Mary. His Martha — his frantic sense of duty — would eventually succumb to the ravages of Alzheimer’s in his final year. In my last two visits to him, he would barely recognize me. But he seemed finally to have a reached a level of peace: still constantly moving, he would simply shuffle slowly from room to room like an old crab, singing softly to himself, praying in tongues, or having imaginary conversations.
The outside world no longer seemed to perplex him. He would allow himself to be guided to a chair or bed or the bathroom. He seemed to be in another world already. And finally, he staggered and fell. Two days later he died, peacefully sleeping or mumbling while my brother and Karen kept vigil over him.
My most cherished memories of him are those last three years — years in which I saw him struggle desperately against the dying of the light. Years in which I saw a level of suffering I hope I will never have to experience. And yet it was in these years of suffering and disintegration that my father exerted his most profound influence upon me — more than when he was at his greatest powers as a father, professor, or missionary.
All his greatest virtues — duty, tenacity, and fidelity — were show-cased during these final years. As he weakened, his thrashings towards these virtues increased; as a mountain goat with a broken leg thrashes most desperately to regain his ability to gallop up steep mountain slopes, so my father thrashed most desperately to do his duty as his brain become more and more entangled in the plaque and tangles of his dementia. Until finally he too lay still. But I had begun to see the awful Weight of Glory resting on him.
The Two Images:
Two Images capture my father’s Weight of Glory.
There is this one:
And then this one…
…of my father baptizing hippies in the Indian Ocean during Cape Town’s Hippie revival of the early 1970’s — And I don’t know which one I like more. In the former, I see the Weight resting on him. In the latter, he sees the Weight resting on others. Both are heavy.
First published in The Other Journal: An Intersection of Theology and Culture. The Seattle School of Theology and Psychology, October 22, 2018.
