Ida

When I was small, I grew up in a house in which there was a broom cupboard that opened up to the rooms of the house in which my paternal grandfather and grandmother lived. We called it the Narnia cupboard, for when you walked through it, you entered a different world. There were different smells, different words, a wholly different aesthetic and feel.

I still remember vividly the morning I climbed through that cupboard upon waking, to ask my grandfather Bernard and grandmother Ida where my family had gone. I discovered them all already there, my brothers and parents and Bernard, in the corridor by the study with dark wooden skirting boards, solemnly congregated around the body of Ida, which was lying on the floor. I was four years old.

I never appreciated that it was unusual that my parents had decided to invite my father’s parents, Bernard and Ida, to live with us. It was only as I grew older that I began to piece together that the quirks of Ida’s behaviour were, in fact, a feature of a decade-long decline into the grasp of dementia.

My parents had enfolded her into our lives, with all the strain and difficulty and discomfort that involved, and I respect them for it.

Pa

Like my father’s parents, most Australians will not go into residential care. Some, however, will. This was the story of my mother’s parents, Ma and Pa.

Throughout my twenties, I spent most Saturday mornings visiting them. The onset of 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 formidable array), a code breaker and Cambridge-trained Greek scholar who would be able to recite poems like Kubla Khan in full, began to forget – first the events of the day, then the narrative of his life, and finally our names.

“I would prefer to remember him as he used to be.” – Family friend

What does relationship look like when all the familiar handholds no longer assist us? So much of our shared life is in the exchange of stories or ideas or doing a common task. I found it disorientating at first 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. Was Pa less Pa now that he could not remember or narrate his own story?

This is an important question. Are we only ourselves for as long as our memory and cognition remain intact? I still remember the sting I felt when an old friend of Pa’s declined an invitation to visit him. “I would prefer to remember him as he used to be,” he said. I think most of us have heard or maybe even said something like that ourselves. But are any of us who we used to be? Is personhood static?

I understand the grief which underpins this impulse to avoid what feels to be the fading beyond recognition of a person we love. But perhaps this is an opportunity to recognise new, deeper, parts of who they are, and to commune with them there in non-cognitive ways.

I appreciate that this is not an easy thing to do. Some forms of dementia are more distressing than others. But I wonder if together we can work at exercising the muscle of being with, and creating space for, others who do not possess cognitive lucidity.

It’s not only about our minds. The way dementia works its way through a person means that the body deteriorates along with the mind. After Ma died, suddenly and after a stroke, I would usually visit Pa at lunchtime. In the early years he would be able to coordinate spoon to mouth but, over time, this became more difficult for him. In the last few years of his life, he would need us to help him. Like one feeds an infant, I would feed my wonderful, magnificent, revered grandfather. Honestly, it was hard work. It was anything but pretty. Practically, he would seem disinterested in his food. Emotionally, it was a lot to process. I felt shy at first, hyper conscious of this role reversal, and not wanting to infringe on his dignity. This is when I first began to grapple with the question that many of us have been confronted with: Do dependency and loss of autonomy diminish our dignity?

Am I less a human if I am no longer able to express myself in the same ways I once did?

Dignity

The question of what human dignity consists in is one which the moral philosophers have pored over. Is it contingent on the ability to exercise certain capabilities? If so, which ones? Is it a variable measure of flourishing that we can have more or less of? Or is it a fixed and inherent quality that each of us hold by virtue of bearing human DNA? Is it both? This is not the place to go into discussions of Rawlsian range properties and ‘supervenience‘, but I do think it gives us pause to consider: Am I less a human if I am no longer able to express myself in the same ways I once did?

If I no longer actualise capabilities like cognition, rationality, autonomy… has my humanity been diminished? These are important questions for each of us to think through carefully.

The final report of the Royal Commission into Aged Care Quality and Safety tells a story of pervasive substandard care and abuse. It is deeply sad that these findings will not be surprising to many families around Australia. However, just as it is a moment of reckoning for the providers and regulators of that sector, so too is it an opportunity for self-evaluation for all of us.

Is this report a litmus test of what is going on in the soul of our nation? What does it tell us about our consensus on what it is to be fully human?

On the one hand, we are rightly outraged and distressed at the mistreatment of our elders, which does not befit their dignity as human persons. On the other hand, we have come to say things like “she isn’t herself anymore,” which I think veers dangerously close to the suggestion that our personhood, and the dignity which attends it, is contingent upon our possession of certain capabilities.

Limitation creates dependency, which in turn invites us into deeper relationship with others.

Is there an alternative vision of personhood? What if together we could imagine a more expansive, robust conception of self? One in which who we are is not only the stories we tell of ourselves, but, as Professor John Swinton suggests, when our memories fray, who we are is held secure in the memories of our loved ones, of our family and friends – even, perhaps, of God.

Limitation

More broadly, what if limitation and constraint were not things to be feared and despised and railed against, but eased into and embraced for the possibilities they open up, both in our selves and in our relationships?

Limitation creates dependency, which in turn invites us into deeper relationship with others. 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 would not be available to us. Whether it is a grandchild feeding a Cambridge scholar or an adult needing help with their shirt buttons or a spouse tending the bed sores of her beloved, I have an inkling that it is in those depths, where grief and beauty abound in equal measure, that we all become a little more human than we were before.

Please do not mistake what I am saying here for a glorification of loss. Loss is loss. It is to be grieved.

Feeding my grandfather his mushy peas became one of the most intimate disclosures of self and expressions of love I’ve ever known. I consider it to have been one of the greatest honours of my life.

I do not mean to romanticise the pain of degenerative disease or chronic conditions. I am deeply sympathetic to those seeking relief from the unrelenting pain that their bodies give them. I have a small glimpse into the ways that pain can shrink your horizons and your hope: I have lived for fifteen years with a disability which has stripped me of abilities I once loved, and replaced them with the constant thrum of discomfort and frustration and pain. So, please do not mistake what I am saying here for a glorification of loss. Loss is loss. It is to be grieved.

But I do wonder whether all griefs are to be avoided. What if, rather than diminishing our humanity, the loss of capacities which once defined us can deepen and expand our vision of what it is to be human? What if the brightest and fullest version of humanity isn’t found in the shiny self-sufficiency of autonomous independence, but rather, in the messy needs and limitations which make us dependent on other people? In the wondrous vulnerability of one person allowing another to care for them. 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 new and deeper relational possibilities open up to us. If only we are willing to lean in.

The complex challenges and burgeoning need of the aged care sector are daunting. The same vulnerabilities which can create precious intimacy can result in harm and neglect. Nevertheless, we each of us are now faced with an opportunity to step into new, perhaps bracing, relational territory that may stretch our comfort. But not all discomfort is a bad thing.

Born and raised in Sydney, Stephanie has researched and written on Christian lobbying and public engagement. She also has been involved in political and legal advocacy for the interests of various kinds of vulnerable persons.