Why putting a parent into aged care is one of life’s toughest decisions Kate Legge, The Australian, March 08, 2014 Its for the best, yet it feels like a betrayal. Moving a parent into aged care is a fraught business. DAD refuses his walking frame when we pull up outside the rambling two-storey terrace he’s called home for 30 years. Perhaps he doesn’t wish the neighbours to see he’s traded in his walking stick, or maybe he hopes that when he opens his front door he will be transported back to the days he first moved here with his second wife. Blessed with a fresh start after my mother’s death he changed lifelong habits, drinking coffee instead of tea for breakfast with a batik sarong around his waist. The two of them spruced up his century- old Victorian property but since their divorce he has lived here alone, oblivious to the disrepair that mirrors his own. His favourite chair is worn where he’s sat reading by the glow of a lamp that he could switch on blindfolded. He knows where everything is here, including himself. We have come to retrieve a couple of things that he wants for his room in an aged care facility which, however clean, cheerful, well run and convenient to me, will never come within cooee of this address. He climbs the stairs to his book-lined study with me a step behind to catch him in case he falls. His breath quickens from the effort but he doesn’t stumble. He finds the hardcover title he wants. He wrote this book on Australia’s colonial policy a year before I was born. We retrace our steps to fetch his leather-covered Bible from the dining room below. The son of a Presbyterian minister, my father was the foundation professor of history at Melbourne’s Monash University. He worships at the academy of intellectual reason but he chooses the Bible for the narrative comfort it brings. The things you carry are a measure of what matters. Words, thoughts, arguments and stories define him more than bricks and mortar ever will. He pauses for a moment in the kitchen where glass jars of sugar and rice stand sentry on the bench, just as they did when he left here last September to go for his regular early morning swim without any inkling he’d not be coming back. At the Coppin Centre, where elderly patients go for up to 12 weeks of transitional care after an acute episode in hospital, the occupational therapists tell me that some patients jack up rebelliously, obstinately, angrily, demanding the right to resume their old life. They pack their bags and clamour to go home. I once wrote a story about an elderly woman who drowned herself in her daughter’s backyard swimming pool rather than shift to an aged care facility where she didn’t want to be. She left her clothes folded in a neat pile on the patio and plunged into the water while her daughter was blow-drying her hair in readiness for their departure. Most people hope for a good death at home in their sleep. Who wouldn’t prefer to while away the endgame surrounded by favourite belongings flush with memories in a neighbourhood as familiar as the creaking sighs of a corrugated iron roof? Services are expanding fast to support this preference: everything from 24-hour nursing to council-run programs that offer help with shopping, cleaning and odd jobs. Depending on soundness of body and mind, financial means and family support, you can stay put for as long as you are able. But when this is no longer possible, Australia has around 2800 aged care facilities caring for more than 250,000 residents. At 92, dad has flourished on his own beyond the expectations of most older people. I always wanted him to die living rather than to live dying, and that’s what he was doing at the Prahran pool last September when he tripped on a mat as he strode towards the changing rooms; he was hospitalised with a shattered shoulder. This tumble was the domino that triggered a clattering sweep of secondary events, each one diminishing his spirit and his capacity to exert control. He was taken from Alfred Hospital emergency to Cabrini Hospital for surgery; after being pinned together he went to supported residential accommodation; then it was back to hospital with a bleeding ulcer before being released into Caulfield Hospital for rehabilitation; two weeks before Christmas he shifted into transitional care where he suffered eight falls in rapid succession. “Anyone can fall, Catherine,” pleads my younger brother, who is agitated by how the balance of power has tipped. He is determined that our father should be free to go home. My eldest brother believes Dad needs full-time care. I’m stuck in the middle, torn between these polar opposites. We are all distraught at how the natural order of family hegemony has come unstuck. We sit waiting with Dad to attend a “family meeting” where geriatricians and case workers, all women, will block and tackle our father’s hopes at reclaiming the life he enjoyed before misadventure struck. He unpicks their logic as if he’s back at his university leading a seminar, but every qualification he raises is flattened by the facts of a house that does not accommodate his frailty. These professional arbiters shake their heads at the teetering staircase and the upstairs shower. They see danger lurking in the raised lip of a mat and a small step between one room and another. Inanimate household furniture sprouts devils’ horns. The courtyard outside his back door where daisies grow between the bricks, warming him with vivid recollections of afternoons spent gardening, is portrayed as a death-trap. These health therapists spot risk where he finds reassurance. I swing from defending our father’s sovereignty to hearing the sense in the points they plead. Towards the end of his stay in transitional care a place in a well-regarded residential care facility becomes available. Dad and I visit on a 40-degree day. Unfolding his wheelie walker frame from the boot of the car I’m struck by a sense of deja vu, as if I’ve shed decades to become a young mother again struggling with a recalcitrant pram and a wilful toddler. Inside the air-conditioned corridors of the facility I sprint ahead of Dad and wind up inside the high care unit, staring into rows of open mouths and spreadeagled limbs. There is no sign of life in this silent tableau. My older brother tells me afterwards that our late uncle who lived out his days in aged care used to refer to certain elderly residents as “the dribblers”. I prefer “the gargoyles” - a poetic description that a friend’s husband invented for the blank faces he observed in the place where he died of dementia. Our guided tour doesn’t recover from this sight. Dad and I make excuses and retire, drained by the heat and the horror and the heartbreak of a decision we do not wish to make. Days later he falls backwards on the floor. He’s ferried to hospital by ambulance with a suspected spinal fracture. I photograph him in his white gown on his feet inside emergency and send the image to my brother with the caption “Lazarus”. An elderly woman who is alone watches me from a nearby bed. I bring her a coffee and a newspaper from the canteen and she is overcome with gratitude, unlike my father, who is cranky with pain and the indignity of his dependence. Overnight the Scottish-born nurse on duty asked him whether he wanted for anything. “I want to die,” he told her. But he’s done everything to keep himself healthy: fish oil; physical exercise; mental stimulation; working through retirement; muesli for breakfast; margarine instead of butter. “You couldn’t kill your father with an axe,” joked a friend after Dad first went splat. I’m beginning to think she’s right. When he hits the floor for the umpteenth time I tell him: “If you want to commit suicide you’re going to have to throw yourself off something higher than a bed.” He laughs. But this time the damage is serious enough that he forces our hand. We take the place we’ve been offered. It is five minutes away from my house so I can visit him daily. Experts in the field speak highly of the staff and the quality of care. During a second inspection I am heartened by the lounges, the outdoor spaces and the beautiful music, courtesy of a gifted resident who brought her own grand piano and practises pieces by Gershwin and Grieg every day. There is a computer, a library (mostly large print) and the dining room does not stink of mush. We hear of the nightmares in aged care: haunting tales of kerosene baths, gastroenteritis, wet beds, abuse, harassment, even murder. But there are sanctuaries where good people strive on meagre wages to “care” in every sense of that word. Vigilant families are part of the pact. No accreditation scheme beats the concern of sons and daughters popping in often to ensure standards are upheld. No amount of extra services or elegant wallpaper, however, can hide the brutal truth that aged care facilities are a final resting place. Death is a heartbeat away. It hovers. It’s here as we wait for family members to strip Room 126 of their mother’s chattels so we can size up whether our father’s possessions will fit. It is smaller than we realised, but this shortcoming is balanced by the morning sun that lights the corner where I imagine my father might park his armchair. The window looks out on tall ghost gums in a strip of parkland where neighbours walk their dogs in the evening cool. I’m glad for this aspect but the tight dimensions limit what we can bring from home to shoehorn Dad into his new quarters. Like a game of Desert Island Discs, my brothers and I narrow down the contenders to keep him company. We choose the best of the comfortable chairs and a standard lamp. I donate my grandmother’s writing desk for its economies of scale. For the wall we select a large framed Balinese painting that used to fill his favourite nook. We bring a wayang puppet, a photograph of the Borobudur temple in Java, another of him peering from a window inside Istanbul’s oldest mosque, volumes of Oxford companions for the crosswords and glass tumblers for a nightly nip of Scotch. How do you shrink a big life into a thimble? Dad is in hospital when we shift his things. I tell him what is happening and where he is going but the morphine he’s been given for pain plays havoc with his comprehension. Guilt and dread gouge my conscience on the day he is cleared for release. The hospital transports him in a non-emergency vehicle. I am grateful to be spared this job. I’ve cried too many tears and tossed and turned through restless nights agonising over his whereabouts. I wait in the room we have fussed over, overwhelmed by the strangeness of parenting my parent. Yet again I’m reminded of mothering my children. This time it feels like their first day at school. Will my father behave himself? Will he like it? Will he fit in? His relief to be out in the world colours his enthusiasm for the room we have furnished. We walk together along the corridor to visit the library. At the computer he pauses while he searches his archival memory for the password he has not used for seven months. Presto! He nails the combination of letters and numbers and the screen delivers an inbox full of emails from colleagues and friends rolling out an electronic welcome mat. I’m in awe of technology’s power to connect people and amazed all over again by my father’s gold-plated intellectual circuitry. We answer a few urgent invitations and proceed to lunch of corned beef and chocolate cake. Seated across from my father is a man who once lived next door to Dad’s closest friend, a fellow Indonesian scholar now dead. This serendipitous connection is another tenuous guy-rope anchoring him in this foreign world. I am thrilled the day has unfolded smoothly. My father’s resilience is a wondrous quality. There is no doubt he’d prefer to be home, but change is sometimes a good thing. Here’s what I heard him confess to a swimming companion from the Prahran pool who finally tracked him down. “I’ve been going through a trail of adventures of one kind or another,” Dad informed him. “And now I’ve ended up as a new Australian. It may be that the rescue of this place is what I need.” The idea he’s migrated to another country captures the distance he’s come. I’ve experienced a similar sensation as we’ve travelled from hospital to rehabilitation wards, befriending other senior citizens who have been forced to flee home by circumstances outside their control. Resettlement happens in fits and starts and maybe the harsh strangeness of this new order never softens into a familiar second skin. But in an industry that so often gets a bad rap I’ve been impressed by the skill and compassion of carers, many of them true refugees from Sudan who are grateful for a foothold in Australia. Moreover, the system of caring for elderly people seems to work. Dad has been shepherded from hospital to transitional care, affording us valuable time and wise counsel as we’ve sifted through the pros and cons of traumatic decisions. And we have more to make. There is the pressing issue of the empty house he still covets. He likes to visit as if to experience vicariously the breadth of that bigger life he has relinquished reluctantly. He doesn’t shed tears in my presence although I sense the sadness in his bones. Not for the decorative trappings or even the books, since he has bequeathed these to the National Library and the people of East Timor, but because of the realisation there is probably no going back. This turning point brings him closer to the end. Death passes right before us early one evening when we’re sitting in a courtyard at the new place. He doesn’t notice the heavy maroon shroud covering a body being wheeled out the front door. Days later I meet the deceased’s daughter as she’s carting black garbage bags of chattels and piles of knitted coat hangers into the foyer. I beg a small wooden bookcase that she has no need for now. “You didn’t consult me,” Dad huffs, but later softens when he sees how it suits the room where he now sits, somewhere between home and the hereafter. theaustralian.au/news/features/why-putting-a-parent-into-aged-care-is-one-of-lifes-toughest-decisions/story-e6frg8h6-1226843764339
Posted on: Sat, 15 Mar 2014 00:36:49 +0000
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