I am reading a book that explores dementia. The book is entitled Dementia: Living in the Memories of God. It is really a book that falls under the heading of practical theology and pastoral care. I am a systematic theologian (which by the way is also practical) so what does this book have to do with me?
This is a very personal issue for me because my father has dementia. And as it turns out, this is also a very theological issue because the book has at its core ideas about what it means to be a human person and how we, as Christians, may have allowed science and the medical community as a whole dictate the answer to this question more than is warranted.
With nearly every page I am struck in some way by how the community, including the Christian community, speaks about people with various forms of dementia. And it has long been recognized that how we speak about someone or something influences how we think about that person or thing. For example, if we refer to a person as a patient, we understand and react to that person in ways that we would not if we had not classified the person in exactly that way.
And so it is with dementia. We approach the person with dementia with a certain set of presuppositions about what a person with dementia is like, what she can or cannot do, what she will or will not remember. While assigning a label can be helpful in certain ways, it can also shape our understanding of a person and more importantly, cause us to respond to a person in ways that we would not ordinarily respond, thus influencing that person’s understanding of herself.
One common response, as it turns out, is to ignore or forget the person. The author, John Swinton, correlates this to unfriending someone on Facebook. It turns out that the person with dementia, particularly if they are placed in an institution, is rarely visited, except by a few close family members. The reason? “He/she won’t remember anyway.” It does not seem to occur to people that this person might be horribly lonely, in the same way that we would be if we were forgetful and forgotten. If this same person had cancer or some other form of chronic illness, would she be as easily ignored, questions Swinton?
More disturbing to me in all of this is the reaction I have observed in the church, a reaction verified by Swinton. The church, it turns out, seems also to easily forget or unfriend those who have difficulty remembering. These folks are never brought to church – a place of familiarity for them – although the church (the pastor/elder) will occasionally come to them. They are rarely if ever prayed for in a congregational prayer where nearly every other disease, including chronic diseases, is regularly brought before the throne of grace.
I remember my mother asking our very large church whether there might be a Stephen’s Minister who could spend time with my dad now and again, even though he still lives with her, just for some company. She was told no one was available for that sort of thing, although a kindly gentleman from the congregation was eventually located who was willing to spend time with my dad every other week – truly a Godsend.
I have long observed that our churches, like our culture, are obsessed with youth and that this obsession leads to a neglect of those who have served the church well their entire lives. It is hip these days to worry about the marginalized, but how often do our elderly fit into this paradigm? Are they not marginalized in our culture? What will the church do about this group?
With regard to those elderly with various forms of dementia, Swinton asks a haunting question: “Given the ease with which people with dementia can be unfriended, what is it that we actually love in those we claim to love?”