Reflecting on what it means to follow Jesus when living with dementia, through the lens of the Gospel of John
(c) Jennifer Morrill-Fabrizi
Dementia is an overall term for conditions that occur when the brain no longer functions properly. Alzheimer’s disease, which is the most common cause of dementia, results in problems with memory, thinking and behavior. The average life expectancy after diagnosis is eight years. An estimated 44 million people globally live with some type of dementia . Concern about 1 developing dementia is very common. In a study by the Insurance company MetLife, published in 2011, they found that 31% of adults surveyed ranked dementia as the illness they feared the most from a list that included cancer, heart disease, stroke and diabetes . The Alzheimer Society 2 in the UK from 2016 had an even more dismal outlook: 62% of respondents said they feared dementia more than any other disease and believed that receiving a diagnosis of dementia meant their ‘life was over’ .3
In my experience as a lay chaplain supporting people with dementia and their families and in the many conversations about dementia that arise when people find out what I do for a living, I have encountered several concerns about the implications of a diagnosis of dementia for someone’s faith. Concerning matters of faith, I have encountered anxiety as to whether or not a person with dementia is culpable for the sins they commit; whether someone’s salvation is at stake if they ‘blew it’ by presumably falling away after all the hard work they did to live a holy life? Most people can be easily reassured that one is not culpable for sins committed when one has dementia (or whether negative behaviors constitute sin at all, given the lack of reason).
However, the reduction of concerns about the spiritual life to whether or not our sins ‘still count’ seems to support the prevailing view that a person’s life is effectively over once they are diagnosed with dementia; that their spiritual journey at least is on hold until death comes. But is there more to the spiritual life of the person with dementia than just maintaining a holding pattern of avoiding sin? Is there more to supporting the faith journey for these disciples than providing comfort, connection, and a sense of identity through the familiarity of cherished hymns, prayers, and rituals? This is not to minimize the incredible value and sense of spiritual well-being that these practices elicit for the person with dementia — but I am asking us to go deeper. Can I still have a living faith with dementia? Can I glorify God with my life when I no longer have the memory, cognitive capacity, or ability to communicate that I once had? Does the Holy Spirit still dwell in me? How can we speak of following Jesus when we are lost in the storm of dementia?
I come to this topic from the vantage point of working as a lay chaplain to people with dementia and their loved ones. This work has granted me much first-hand insight into the spiritual lives of people with dementia. I have gleaned much from them. I also write this as a person who suffered a brain injury following a motor vehicle collision. As I will explain later, this experience provided invaluable insight on many levels and it informs my work to this day. However, I realize that my perspective, both as a chaplain and as a brain injury survivor, is necessarily anecdotal and subjective. Can we find hopeful Scriptural assurance that we can indeed continue to follow Jesus as dementia progresses?
I believe wholeheartedly that the answer is ‘yes’. The Gospel of John, and specifically the story of Peter provides a rich picture of discipleship that is rooted in love and faith, a picture of following Jesus that does not rest in neither intellectual assent nor achievement nor our behavior, but in a trust marked by radical surrender that goes beyond comprehension, and thus does not depend on neurocognitive ability. The themes of following, love, trust, and surrender are woven throughout John’s Gospel and come together in the epilogue, which is where our examination begins:
[Jesus] said to [Peter] the third time: “Simon, Son of John, do you love me?” Peter was distressed that he had said to him a third time, ‘Do you love me?’ and he said to him, “Lord, you know everything, you know that I love you.” [Jesus] said to him, “Feed my sheep. Amen, amen, I say to you, when you were younger, you used to dress yourself and go where you wanted, but when you grow old, you will stretch out your hands, and someone else will dress you and lead you where you do not want to go.” He said this signifying by what kind of death he would glorify God. And when he had said this, he said to him, “Follow me.” Peter turned and saw the disciple following whom Jesus loved, the one who had also reclined upon his chest during the supper and had said, “Master, who is the one who will betray you?” When Peter saw him, he said to Jesus, “Lord, what about him?” Jesus said to him, “What if I want him to remain until I come? What concern is it of yours? You follow me.” (John 21:17-21)
Peter, holder of the keys of the kingdom is often imagined as the gatekeeper of Heaven. The Gospels paint him as the zealous, hard-working, loyal, and dedicated man chosen by Christ to shepherd His Church. Peter also repeatedly manages– in doing what he thinks is the right thing according to his own earthly reasoning– to miss the point: Peter vows to protect Jesus from those who would kill Him but he is rebuked and called Satan (Matthew 16:22-23). But the passage from the epilogue, aside from being a beautiful three-fold forgiveness and restoration of Peter’s three-fold denial of Christ, is followed by what feels like an out of place, jarring, prophecy of Peter’s earthly end. Peter the great, loyal leader will be led where he does not wish to go, and it will be precisely in this incapacity to act of his own will that Peter will glorify God! Even with all of his will and resolve to follow the Lord; even with having been the one person chosen to tend Jesus’ sheep and to be the first pastor of Jesus’ Church, it is by his passive death that Peter will glorify God. Peter, so determined and strong-willed, will be called to ultimately glorify God through complete submission and suffering.
Let us consider dementia. The person with dementia can easily be treated passively – as a series of medical, cognitive or behavioral issues to be solved from the outside. The person with dementia is often reliant on a substitute decision maker or power of attorney for important choices that need to be made. As mental capacity declines, one becomes increasingly dependent on a caregiver for dressing, feeding, hygiene, transportation, socialization, and more. As the condition progresses and more and more capabilities are stripped away it is in many ways a descent into darkness.
Our culture highly values cognition and the individual. Our concept of selfhood is tied to cognition, rationality, and memory. This grows out of the Enlightenment concept of mind-body dualism: when the mind fails, the person ceases to be — the body reduced to an empty shell.4 Both scripture and ascetic tradition — consider St. John of the Cross’ dark night of the soul — attest to God meeting us precisely when all else is stripped away, when we are at our weakest it is then that God can move with strength and be glorified (2 Cor 12:9). Dare we have hope that when dementia leads us down into cognitive darkness, leading us, passive, where we do not want to go, that God is doing powerful things in our souls?
I have already offered a caveat on the limitations of anecdote, however, part of the fear of dementia rests in being unable to comprehend the lived, first-hand experience of dementia from the outside. I humbly offer, with all its anecdotal limitations, my personal experience of encountering God in the cognitive darkness for the reader’s consideration.
During my temporary cognitive impairment, when my faculty of reason was severely inhibited, I experienced what I can only describe as an incredible grace: a profound awareness of the depths of God’s love for me and His nearness to me; His overwhelming presence –something qualitatively different from anything I had hitherto experienced when I was of ‘sound mind’. I could not comprehend much at that time, let alone how God could be present in my state of unknowing. It is akin to the way non-believers cannot comprehend an encounter with the risen Lord until they have had one. I can only testify to the effect this concussion had on my faith, in my forced experience of surrender: experiencing this profound love of God in the midst of my helplessness and confusion. I couldn’t “comprehend” this love in a complicated, discursive way. It was just an awareness, the certainty of which, my thinking usually obscures. I am not advocating and active pursuit of mindlessness or ignorance by the neurologically healthy, but I cannot deny the power of God’s presence and love in my incapacity.
A very devout and thoughtful man, caring for his wife with dementia, poignantly told me that his fear is that the Holy Spirit had left his wife for she was now of futile mind, and the Scriptures contrast futility of the mind to the mind of one living in the Spirit (see Eph 4:17, 23). He was sincerely and greatly troubled by this. I was troubled too and have spent several months praying and pondering over this. Peter’s story again offers valuable insight. After calling Peter ‘Satan’, Jesus explains why Peter is a stumbling block in desiring to protect Jesus from the sufferings of the cross: “You do not have in mind the concerns of God, but merely human concerns.” (Matthew 16: 23b). I wonder if the futility of the Gentiles’ minds is not about intelligence — the Gentiles of Pauls’ world included the highly educated, lovers of wisdom and sons of Aristotle, the Greeks. I wonder if rather it is the futility of living in a world view that is not centered on the reality of God and our relationship to Him. In John’s Gospel we also see the juxtaposition between earthly and heavenly concerns in the bread of life discourse. For example Jesus tells the crowds that were fed that they are looking for him “not because you saw miraculous signs but because you ate the loaves and had your fill” (John 6:26). Similarly the Samaritan woman at the well – John 4:11– asks to know the source of living water for purely practical reasons, not yet comprehending that Jesus is speaking of something greater than bodily thirst.
Perhaps then, this is the futility of the mind: that we consider only our earthly concerns. Most of us are terrified of that unknown valley of dementia and we recoil at the thought of being led where we do not wish to go. Dementia is a particular affront to our culture which values above all utility, productivity, independence, agency, and cognition. For many of us, most especially me, these are the idols we need to lay down. my idols. Sometimes we achieve this by discipline and penances, other times God invites us to let Him use the circumstances in our life to effect a more passive entry into this route — if we will let Him.
In practice, most of the people I work with who have dementia have lost aspects of their cognitive functioning but they often remain highly concerned about relationships, about belonging, wanting to know they are loved and that they love. The words of the Our Father, the 23rd Psalm, and favorite hymns still come with ease, often amazing and delighting the unexpecting onlooker. Plaintive cries out to God and the groaning of the spirit come to populate the content of one’s verbal expression. Certainly, one often gains the sense that the God’s Spirit is powerfully present in the shrouded (from us), mysterious inner world of these people living with advancing dementia. Might God use this painful stripping away and loss of so much in a way that allows us to be oriented towards what matters most: to remain in His love (cf. John 15:9)?
Among Jesus’ earliest recorded words in John’s account, are invitations to his disciples to follow him, to come and see what he is about (John 1:39,43). “Follow me”, spoken to Peter twice in a four-verse-span, are also the last words of Jesus that John records (John21:19 and 22). Thus, I propose that John’s Gospel serves as an exegesis on what it means to follow Jesus.
Following can be done in two ways: one way involves more of a mental exercise – to consider the teachings of another and to model one’s actions and decisions upon them. I think this is the way that we most often consider following Jesus – indeed Jesus instructs his disciples to go out and teach all people to obey everything he hand commanded (Matthew 28:20). However, the other way to follow is to travel along the same path as another. Consider the lowly sheep Jesus repeatedly compares us to. In John’s Gospel, Jesus explains that “My sheep listen to my voice; I know them, and they follow me. I give them eternal life, and they shall never perish; no one can snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father’s hand” (John 10:27-29). Likewise in the twenty-third psalm, the Lord leads and guides me. Therefore, “Even though I walk through the valley of the shadow of death, I will not fear, for you are with me” (Ps 23:4). The sheep doesn’t necessarily comprehend where the shepherd is going to lead him, indeed, it may be through dark and hostile territory, yet the sheep follows and does not fear because he trusts wholly in the shepherd’s protection.
Let us consider how Peter is called to follow Jesus in both senses of the word. In John’s epilogue Jesus asks Peter three times, “do you love me?” and each time commands Peter, in slightly different variations, to care for his sheep. For Peter to follow this command we are considering the first sense of the word. However, Jesus explicitly tells Peter to “follow me” immediately after he explains how Peter will suffer and die. Thus, Peter will follow Jesus’s path to the Cross, and Peter will do so, not of his own will but passively as one who is dressed by another and is led where he does not want to go. I believe that this is an invitation to Peter to follow in Jesus’ footsteps as a sheep himself, with trusting abandon in the Lord.
We think we know what following Jesus will mean – or rather, we think we know generally where following him will lead us. I think this, in part, is why dementia is so devastating to us: it’s nothing we would have asked for, we can’t imagine why God would let us go down this road, and we realize, at least in the early stages of our decline, just how unknown this road will be, and can foresee that we will be in the dark. Like Peter, we may be tempted to ask why is this happening to me, why not to that one over there (cf. John 21:21)? Jesus’ response: “Follow me”.
It can be maddening! We might feel that if God was really for us, he would never allow us to experience this. We cry out plaintively: Why does evil happen? Why does God permit me or the person I love to have dementia? It’s human to want to rally against God in anger at the diagnosis. But this sickness, suffering, dementia is there whether or not we choose to follow Jesus. This reflection is not an answer to the problem of evil in this lifetime. Rather, I simply point to the example of Jesus himself, and to Peter’s death too. Jesus acknowledges the reality of this broken world and tells his disciples that “in this world you will have trouble, but take heart for I have overcome the world” (John 16:33).
When Jesus told his many followers that to obtain eternal life they would need to truly eat of his flesh and drink of his blood, there were many that turned away and no longer followed him as they could not accept this hard teaching (John 6:60, 66). They no longer followed because it was a hard teaching by human standards. Indeed, how could anyone remain? Again we look to Peter:
“You do not want to leave too, do you?” Jesus asked the Twelve. Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life. We have come to believe and the know that you are the Holy One of God.” (John 6:67-68)
We choose to cling to Jesus, and to assent to following him down this difficult path because his way is true, because he has the words of everlasting life. To whom else would we go? We are naturally tempted to protest the possibility that God allows us to endure things like dementia, but He does. And somehow, beyond our comprehension, truly good things can come out of our experiences with dementia.
Perhaps you have dementia, you find yourself being led increasingly by others, walking a path you never would have chosen. That you are grieving so many losses and are feeling confused and forgetful can be scary, humiliating, frustrating. But I also know from my work in chaplaincy and from plenty of published research in spiritual care and dementia, that your ability and desire to love and be loved has not diminished although it may look different. I work in a long term care facility where many residents have dementia. If love is to will the good of another, there is love there in abundance. To name some simple, small acts as examples, I have residents who offer to share with me their meals and desserts. I see residents comforting others who are upset – sometimes wordlessly. Offers to share and to help one another abound. So many of concerns that my residents express are for the welfare of their loved ones. There are gestures of caring, gentle words and acts of love, squeezes of a hand and sparkles in the eye that convey so much. You may fear that your love for others will decrease as your ability to sometimes recognize faces diminishes, but my experience has been that if anything, the importance of love in your life will –sometimes painfully in its rawness and urgency—will only increase.
Ultimately, faithfulness and is not about the ability to make a theological case for God. Rather, it is a question of love: “[Jesus said] ‘A new command I give you: Love one another. As I have loved you, so you must love one another. By this all men will know that you are my disciples, if you love one another’ “(John 13:34-35). In his commentary on Paul’s letter to the Galatians, Cornelius a Lapide attributes to St. Jerome a story concerning John, the author of the Gospel:
“When [John] was living at Ephesus in his extreme old age, and was with difficulty carried into the Church in the arms of his disciples, nor could find breath for many words, he would say nothing time after time but, “Little children, love one another.” At length, his hearers being tired of hearing nothing else, asked him, “Master, why do you always repeat the same exhortation?” He replied in a sentence worthy of him: “Because it is the Lord”s command; and if this be done all is done.” 5
May you trust that God is with you, in your love. May you know that he is beyond your intellect and your senses, that God is drawing something deep out of your spirit. Let your spirit groan in its longing to abide forever with Him. You are made for eternity with God face to face and we know that what this will be like is beyond our comprehension. In that case, why do we worry that our ability to comprehend will separate us from the love of God?
Caregiver, as you take on the role of having to direct, guide, and dress your loved one, at times wearily, I pray that you may see in your loved one Peter being led. May you trust that God wills to use even this suffering to His glory; that the natural desire to see God is not destroyed in your loved one, even if he can no longer communicate this. Our natural desire to see God is only satisfied by grace. Trust in God’s grace, He is on the move, He is in the silence after the storm,
He is beyond the tribulations and trials but also with us all the way through.
Endnotes
1 Alzheimer’s Association, 2021, “Alzheimer’s and Dementia in Canada”, at Alzheimer’s Assocition, at www.alz.org.
2 W. Tang et al., 2018, “Concern about developing Alzheimer’s disease of dementia and intention to be screened: An analysis of national survey data” Archives of Gerontology and Geriatrics 71 (43-49).
3 Alzheimer’s Society, 2021, ”Over half of people fear dementia diagnosis, 62 per cent think it means ‘life is over’”, at Alzheimer’s Society, at www.alzheimers.org.uk.
4 T. Fuchs, 2020. “Embodiment and personal identity in dementia”. Medicine, Health Care and Philosophy, 23 (665-676)
5 Cornelius a Lapide, 1908. “Galatians 6” The Great Biblical Commentary of Cornelius a Lapide, at Study Light, at studylight.org.