05/06/2026
Reverend Mogomotsi Diutlwileng is a man who holds other people's grief for a living. As a minister, he sits with the dying, comforts the bereaved, and stands at gravesides more often than most. He knows, intimately, the weight of loss. And yet nothing, not his calling, not his faith, not the long African tradition of caring for elders that was woven into him from childhood, prepared him for what happened to his mother.
"The whole thing was triggered by the death of my father," he says quietly. "Her husband. Who was murdered."
He lets that settle. The murder of a father, a husband, a patriarch: in many African households, it is not simply a death. It is a rupture. It tears up something open in the fabric of a family that never fully closes. And for his mother, that rupture set something else in motion.
"She carried this with her," Rev Diutlwileng continues. "And there were other deaths that came after that. All of this coincided with old age, so you had grief and loneliness, kissing with old age. And as we were preparing for the funeral of her nephew, on that day, her brain just deteriorated very quickly. It was a confusing thing because my mother was a very strong human being, and it found us unprepared. We just had to roll with the punches, not knowing what we were doing."
What made the confusion deeper was that this was not, in hindsight; the first-time dementia had come close to his family. "I was a toddler in the early 80s," he recounts, "when my paternal grandmother began to show signs of confusion: talking about people in the past and just taking off and wandering." But then, there was no name for what she had. In many rural communities, there still is not. The absence of a name does not mean the absence of judgement and shame.
"In rural places where people don't have access to medical knowledge or an explanation," Rev Diutlwileng reflects, "they search for a label. And if the behaviour is not good, then it must be bad. So, suspicion becomes something demonic, something in the realm of witchcraft. And people get dehumanised and rejected."
This is one of the painful realities that can accompany dementia: a person who is already lost to themselves may also lose the understanding and protection of those around them. The community that should be a refuge can become another source of fear, judgement, and isolation. For families, the burden is doubled: they are managing the illness while also navigating the stigma that surrounds it.
Rev Diutlwileng did not have the luxury of stepping back from his responsibilities. While caring for his mother, he continued his full-time ministry, shepherding his congregation even as he quietly worked to find his footing at home. Rather than hiding what he was facing, he made an unusual choice.
"I had five staff members in our parish office," he says, "and I let them in on what I was dealing with. Because sometimes my wife and I were both busy, and I had to leave my mother alone when I went to give Holy Communion or visit a parishioner in hospital. I could not stop doing the pastoral work simply because my mother was sick."
His church community, he discovered, could absorb more than he expected or thought. He remembers one Sunday that a moment that, in a different environment, might have been mortifying, with something close to tenderness.
"I was in the middle of a sermon. And she stood up and came to me and began to talk." He pauses. "One of the mothers took her gently and went and sat with her when she became unsettled."
One of the mothers. In many ways, that simple moment captured what community care can look like. The quiet, unremarkable act of an older woman in a congregation standing up, moving across the room, and sitting with someone who is lost, that is ubuntu made visible. It is the village responding. It is exactly the kind of ordinary grace that, if it can be named and cultivated and extended to more families, could transform how communities carry this disease.
"In the Christian culture we have fellowship groups and it’s in our nature to care, and this is why education, and awareness must extend to faith communities. They can be a source of solace and support."
Caregiving, even when shared by a family, often comes down to deeply personal moments that one person must navigate alone. Rev Diutlwileng speaks openly about what some of those moments looked like for him as a son caring for his mother. He shares what came next with courage that is itself a kind of sermon.
"It is very embarrassing," he says carefully, "as a male Black person, to move into a room when your mother is naked."
In many cultures, there are deep, old codes around the bodies of parents: the sacred boundary between a mother and her son, a father and his daughter, about what is seen and what is not seen. These are not trivial customs. They are part of how families hold each other’s dignity.
What Rev Diutlwileng did, crossing that threshold out of love and refusing to let his mother face those moments alone, cannot easily be put into words. “But then, what do you do when you are in my situation?” he says. “You just break all the rules that you were brought up with. All beliefs. And you just get in there and help your mother.”
He did not say this triumphantly. He said it the way you describe surviving something, not celebrating it, just acknowledging it happened, that you came through.
"You deal with the confusion, the discomfort, the exhaustion. And then you have to deal with the questions of faith: Why, God? Why this? Why me? Why is this happening to my mother? So, there is emotional turmoil and spiritual turmoil. You've got cultural barriers and the physical exhaustion because you are always on your guard. One minute she's here, next minute you cannot find her. Then she wets the floor, and this is your mother. Your parent….". His voice trails off. There is no tidy sentence that follows that. There does not need to be.
It was Professor Rayne Stroebel, speaking during the same Dignity SA webinar, who offered a frame that named something Rev Diutlwileng had been circling all along.
"The more I see how people are affected in older age by unresolved trauma," Prof Stroebel offered, "the more I think that dementia may be a disease of the disconnected soul. From what Mfundisi shared about how much grief his mother had carried, there was so much happening around her that something in her ‘short-circuited.’ A switch tripped. But not at the main switch, as it were. Because no matter what happens, we retain consciousness, that sense of I Am, our connection to God or source."
A disease of the disconnected soul.
For Rev. Diutlwileng, Prof. Stroebel’s reflection resonated deeply with his experience and was more impactful than a medical explanation. His mother had grown up under apartheid, raised children in the shadow of that brutality, survived the murder of her husband and a nephew and too many other losses to count. To call what happened to her brain a kind of spiritual disconnection, a short-circuit in the self, is not to mystify it. It is to honour the whole person. It is to say: look at what she carried. Look at all of it.
"Is it any wonder," he asks quietly, "that this strong woman disconnected at some point?"
He invited his family members to attend the dementia webinar, knowing that healing in families so often begins with naming, witnessing, and bringing things into the light. Someone must go first.
And in the end, he has a gift to share. "Dementia is a disease that reminds us of our vulnerability and frailty as humans," he reflects. "It's the one disease that you cannot throw money at. Even doctors admit they barely understand it. It levels the playing field and gets you to be humble. It reminds you about what matters most. The qualities of love and patience. These are the only gifts you can give. Just a full presence. That’s the essence of being human. Just a full presence. That's the essence of being human."
From a man who has walked families through grief for most of his life, those words carry a different kind of weight.
- Reverend Diutlwileng was a panelist in our recent Dignity Dialogue on Dementia & Caregiving. To listen to the podcast of this webinar called ' When Memory Fades but the Soul Remains' please visit follow the link in comments below.
Changing the law on the right to Die.
