Over the last year, a huge proportion of the residents in the aged care facilities around our country did not receive a single visitor. Not one.
Mike Baird, the former Premier of NSW and current CEO of the charitable aged care provider HammondCare, drew attention to this grim situation – citing a figure of around 40% – on ABC’s Q&A just before to the release of the final report of the Royal Commission into Aged Care Quality and Safety. The precise numbers are unclear, but whatever the statistic, if that is true for a single person, it is a tragedy.
It is vital that we attempt to understand the story behind that statistic.
One possibility is to attribute it to the pandemic; indeed, that is the framing given to it by the second recommendation of the final report. The hurried and harried state of modern life is no doubt also partly to blame. But I have been wondering whether these visiting rates require a more fundamental diagnosis, particularly given there is some anecdotal evidence that visiting rates seem to have dropped even after restrictions have eased. When paired with the picture of pervasive substandard care and abuse painted by the Royal Commission, you get an uncomfortable sense of where we are at as a nation. Just as it is a moment of reckoning for the providers and regulators of the aged care sector, so too is it an opportunity for self-evaluation for all of us: What does it tell us about our vision of what it is to be fully human?
The conversation that always comes to mind for me is one in which an old friend of my grandfather’s declined an invitation to visit him, because, he said, “I would prefer to remember him as he used to be”. It stung.
The onset of my Pa’s dementia was gradual at first, but soon, after a fall, the cognitive decline was steep and fast. A man who had once been able to recall everything he had ever read, a code breaker and Cambridge-trained Greek scholar, began to forget – first the events of the day, then the narrative of his life, and finally our names.
What do we do when the things that once fuelled our relationships run dry? So much of our shared life is in the exchange of stories or ideas. I found it disorientating when Pa was no longer able to track with a conversation about abstract ideas or, eventually, process any questions about himself. That had been the fodder of my childhood: the telling and re-telling of stories from his past.
I understand the grief which underpins the impulse to avoid the confronting effects of old age and dementia. It feels like the person we love has faded beyond recognition. But perhaps this is an opportunity to recognise deeper parts of who they are, and, in turn, of who we are, too.
What if together we could imagine a more expansive, robust vision of personhood? One in which our dignity as humans does not depend on whether we are able to exercise certain capabilities. One in which who we are is not merely determined by self-expression, but relationship; in which identity is not only the stories we remember and tell about ourselves, but is held in the memories of our loved ones, of our family and friends – even, perhaps, of God. We are remembered, even though we may forget. That’s an identity that remains secure even when our memories fray and our capacities are diminished.
What if, rather than diminishing our humanity, the loss of capacities can deepen and expand our vision of what it is to be human? When we come to the end of our self, and reach out in need of help, we begin to know depths of intimacy that otherwise we would never know.
I do not mean to romanticise the pain of degenerative disease or chronic conditions. Loss is loss. It is to be grieved. I am deeply sympathetic to those seeking relief from the unrelenting pain that their bodies give them. But I have come to wonder, both through witnessing the deterioration of those I love, along with my own experience of a body at war with itself, whether diminishing capacity diminishes our dignity.
To the contrary, it seems to me that the most remarkable version of humanity isn’t found in shiny self-sufficiency, but in the messy state of need that makes us dependent on other people. In the wordless and sacred exchange between two people when one entrusts themselves to the other. In the profound attentiveness that is required when speech can no longer disclose our needs and desires. It is in those places that deeper relational possibilities open up to us. Whether it is a grandchild feeding a former scholar or a spouse tending the bedsores of her beloved, I have an inkling that it is in those depths, where grief and beauty abound, that we all become a little more human than we were before.
Stephanie Kate Judd is a solicitor who has been involved in legal advocacy for the interests of various kinds of vulnerable persons. She is an Associate of the Centre for Public Christianity.
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