8 July 201917 September 2019 aged care Dementia is not a democracy: looking for freedom in an old folks’ home Tom O'Lincoln ‘Who am I?’ Betsy is calling from across the corridor. Sometimes it is ‘Where am I?’ The plaints come together, along with worried queries about how she will pay for lunch. When the nursing staff ask her what she wants, Betsy has an answer: ‘I want to go home’. ‘But this is your home,’ is the reply from nurses and carers. Sadly, no it isn’t. An old folks’ home, aka an aged care facility, is only ‘home’ by default. People living in them are all too often missing their real home life. Sometimes a wishful plea to go home is a wistful form of defiance. You are probably now feeling the icy fingers down your spine that accompanies the thought of dementia. We know there is an increasing likelihood we will experience it as we live longer. Even so, it’s curious how sharp the fear of dementia is, compared with that of death. An experienced nurse tells me of seeing several people at the end of their lives. All of them said ‘it was time’ for death. This calm response contrasts with the dread associated with dementia. That needs explaining. On the face of it, the prospect should be less dreadful, given life at least remains. But what is lost is identity. Why is the thought of losing this more frightening than the thought of losing life itself? * When people try to leave here, it isn’t at random. I was sitting at one end of the dining room as a member of staff called out that a certain resident was ‘trying to get out of the building’. Although it isn’t unreasonable that the staff call out such things, I found it all disturbing, as I do the apparent quiescence of the residents. Like Betsy, many of us often want to go home. This desire isn’t just sentimental, and is more likely to arise during the person’s former working hours. Say, eight am to five pm. At five pm, they see the staff numbers thinning out and the lighting dimming. From a long experience, this is associated with going home. It is tempting to see this as a liberating impulse, but I know about what happens if you follow this impulse. In late 2016, I spent days in a state of delirium at Royal Melbourne Hospital, with all sorts of adventures going on in my head, my identity – like my location – highly doubtful. I thought the nurses were trying to imprison me, so I tried to escape from the hospital building. Had I succeeded, I would probably have blundered into traffic, endangering those around me and myself. Delirium is not a democracy. Neither is dementia. Nor can it be, at least not at its core. People who misread reality should not make decisions. Which is not to say nothing can be done. We can make the surrounding society more democratic. We can make the surrounding territory less hostile. We can provide better funding. For instance: do hospitals really have to be built next to traffic? * Shortly after my arrival at my current residential care unit, it was Remembrance Day. As an internationalist, the pending event made me nervous. Usually, dodging awkward occasions is easy if you have other things to do, but I had none. As I was so new, I felt I couldn’t afford to antagonise people. When everyone stood up, I would be exposed if I didn’t join in, so I decided I would wing it and stand. The event started, a group stood up to the strains of God Save the Queen. Then the dulcet tones of Advance Australia Fair. Here was the existential moment. I waited a moment and nobody stood up! Peer pressure couldn’t work – too many people in wheel chairs. * Dylan Thomas wrote: Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light. I wish no-one a conflicted death, but I also see the power of the poem. Barry, for one, is not happy to go gently. Barry is a fighter. At his worst, he fights for his favourite chair, blocking the aisle and raising his voice. At his best, he stands up to oppose injustice, as he did when I, a newly arrived resident, missed breakfast. Barry protested in a loud voice and saved me from a hungry morning. Breakfast is a battlefield whose places are contested. At the same time, the delivery of food is a system of control and pacification. One injustice can’t be avoided and Barry talks about it where most of us keep a discreet silence. It’s death. And yet hardly anyone seems to mind. Just as well, for an aged care facility is inevitably focussed on death. In an attempt to mitigate this, managers hire empathetic people who know how to spread joy. However, there is no dodging it when you would like to move to a new room – but it’s currently occupied. * Walkers have a status effect. In our minds we can still move freely, but now we suddenly find ourselves burdened with a walking frame, which has to go everywhere with many of us. If you leave your room without one, persistent voices echo: ‘Where is your walker!’ * There are men and women here, many of them single. When for a time I found someone to hook up with, there would be a simple but awkward question: where to go? Looking around here I find myself on an airport-sized field of singles units. Although the prospect of romance at first seems uncomplicated and prejudice against sex among the elderly is fading, there is still a dilemma given the various medical issues we have: the minefield of consent. How do we establish consent if we can’t remember? * The timetable is based on most residents going to bed by eight pm or so. Getting us back to our rooms is part of us being counted. It is control of time and space. However, it’s been many months now since anyone tried to make me go to bed at eight pm. A democracy in aged care would need to work through a series of layers. The society around us would have to be more fair. It would look for better ways to finance the system. But above all it would find a way to involve residents more in decisions about how the facility functions. Perhaps one day ‘homes’ will really be more like homes. There are many resources with analyses of the aged care system, but very few provide an insight into the lived experience written by a resident. Tom hopes to write more such pieces in the future. All names in this piece have been changed to protect the privacy of the people mentioned. Image: inside the grocery store in the village for Alzheimers sufferers at Hogeweyk, the Netherlands. Tom O'Lincoln Tom O’Lincoln is a lifelong socialist and political activist who has written eight books and numerous newspaper and magazine articles over fifty years. His most recent book of political memoirs, The Highway is for Gamblers, was published by Interventions in 2017. Tom is currently living with Parkinson’s disease in an aged care facility in Melbourne. More by Tom O'Lincoln Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places. If you like this piece, or support Overland’s work in general, please subscribe or donate. Related articles & Essays 1 First published in Overland Issue 228 27 October 202025 November 2020 aged care The uncounted death toll of coronavirus in aged care Marama Whyte My grandmothers are only two of the aged care residents who have died during the coronavirus pandemic. They didn’t die of Covid, and don’t appear in the daily tallies released by the state and federal governments. In fact, they are barely mentioned at all. But their deaths were nevertheless the result of a failed public health response and were caused by the pandemic as much as any Covid-attributed death.