I should have suspected something about nursing homes when a veteran nurse retired in disgust, declaring that she could no longer see a birthday cake being recycled, one slice at a time, to celebrate a resident’s birthday. Outrageous as I found it, I could hardly ask one of the thousands of patients who passed through the hospital doors. But if I did, I think they’d all trade a dry and curled up slice of cake once a year for certain daily dignities like a tasty meal, a water jug within reach, and a timely change of their incontinence pads.
The Australian royal commission into aged care quality and safety is now underway, uncovering gut-wrenching accounts everywhere it looks. The stories of neglect, abuse, deprivation and disdain are pouring in. As I hear them, my mind summons its own roll call of witnesses, grown tired by now of repeating their stories to every hospital and every doctor on the coalface of modern medicine.
I think of all the elderly people I’ve sent from hospital to residential care. I can feel them clutch my arm and hear their desperate pleas that make me out to be some final arbiter of their fate when I am just another cog in the wheel. If they can’t manage at home, if their family is unavailable or unwilling, and all the home help in the world can’t help, what choice is there?
But most often, I think of the daughter branded “difficult” by the hospital and a “pain” by her father’s nursing home. Her father had suffered a stroke and while his cognition was spared, not so his dominant arm and speech. A brittle diabetic, his insulin required fine titration according to the amount he ate. This meant two practical things – his meals needed to be balanced and timely, and someone needed to watch that the meal entered his mouth and not his bib.
Obvious as this might sound, his daughter spent her entire life shuttling back and forth to the nursing home to make these two things happen. When the hospital complained about her “fixation”, I met her with some irritation but was thoroughly humbled to realise that she really was her father’s only advocate in a system that was neglectful of him and dismissive of her. What an extraordinary burden to carry with no recognition.
As a young doctor, I perpetually wondered why people who admitted to needing care protested so much at receiving that care. Now, I cringe at my naivety.
Years of listening to my patients have shown me that yes, they’ll be safe from the stove left on and won’t have to huff and puff to get the groceries but there will be unforeseen problems and different indignities. Those who happily ruled their own cluttered roost find themselves dehumanised in residential care, their stomachs full but their hearts empty. Perhaps this is why the poet laureate Donald Hall called old age “a ceremony of losses”.
But there must be “good” nursing homes, we hear. I’ve been inside a few of those too, most recently supporting a friend, who is cognitively intact, physically weak, and 20 years younger than the average resident. The carpet is clean, the paintings look nice and an artificial fragrance overpowers the usual bodily smells. But here too, the residents are treated like replaceable clients, not real people. The staff sound polite, but act removed. People might get the designated care and yet be completely anonymous. This total disempowerment is a poignant reminder of why nursing homes have long been lamented as “God’s waiting room”.
The royal commission will yield many insights into the systemic problems confronting the aged care sector. We will find ourselves discussing price structures, staff ratios and chemical restraints, things subject to oversight and regulation. But there is one thing that no one can regulate and that is how we as a society actually regard our elders.
If the stories of my elderly patients are anything to go by (as they ought to be), we are failing them badly. Our parents and grandparents feel like an encumbrance in the transition from being youthful and helpful to getting old and needing help. Our noisy and busy lives, fuelled by the need for self-actualisation, don’t have room for the elderly, especially when they’ve grown a little hard of hearing, slowed in pace, or require the kind of patience they might have once given us.
Up to 40% of nursing home residents never have visitors; the rest make do with rare and rushed visits. Children and youth have all but disappeared from sight. It’s telling when an elderly patient begs to spend a weekend in hospital rather than return to the confinement of a nursing home and when another forgets her pains at the sight of children that remind her of her own grandchildren. From what I see, it’s not getting old that people fear, it’s getting old and lonely and disconnected. And it’s not the idea of nursing homes they find upsetting so much as the connotation of being removed from society and losing their identity. I no longer tell patients a nursing home will be “good” for them, I simply tell them they need it.
How should we care for our elders? As a parent to dependant children, a professional who confronts the scourge of loneliness in my patients, and a daughter and daughter-in-law to four aging parents, my juggle is all too common in an ageing society. Some days I get it right, other days, I fall short, but there’s always something to learn from watching others.
No doubt, governments and institutions must address the major structural deficits in aged care to bring ease and dignity to all residents. But it shouldn’t take a royal commission to examine our own conscience and decide on what meaning we want to attach to our elders.
The royal commission might mean that nursing home residents receive a fresh slice of cake on their birthday. But they will still need someone to share it with.
• Ranjana Srivastava is is an oncologist and Guardian Australia columnist