We encouraged my aunt with Alzheimer’s to move into aged care. But what good is a safe life if it’s not the life you wish to live? | Denise Mills
Lately I’ve been having dreams where I’m desperately trying to save my aunt, my late mother’s twin with no children of her own, from the clutches of Alzheimer’s disease. These dreams are not heroic. They involve me, an accountant, hunched over my computer trying to reconcile the life she’s living in an aged care facility to the life she should be living as a vibrant 68-year-old.
But the maths isn’t working: where do I put the debits and credits?
Since her diagnosis in 2022, in many ways my aunt is the same person she’s always been. Each day we dance in the elevator, then stroll to the nearby park to look at the cedars, oaks and elms. In the speckled sunlight, she tells me about local landmarks like Yuranigh’s grave, the fact that dolphins kill sharks, or teases with feigned seriousness that my brother is her favourite. “You’re such a meanie, Aunty,” I say. “Yeah,” she replies. “I steal all your boyfriends.”
Dementia now causes greatest burden of illness, injury and premature death in older Australians
Read more
But there’s now another side of my aunt: one that obsesses over dirty laundry; can no longer send a text message; or understand the rules of Connect Four. She suspects the clocks are being changed. In the late afternoon, when she’s most confused, she asks heartbreaking questions: “Do you know where my mum and dad are?”
My dreams are born of guilt: my brother and I encouraged her to move into an aged care home and, in doing so, we have prioritised physical safety above all else. From the outside this seems like a logical choice.
But what good is a safe life if it’s not the life one wishes to live?
Sign up for Guardian Australia’s free morning and afternoon email newsletters for your daily news roundup
Naively, I assumed that the dementia ward of an aged care home would be a specialised place where staff would share a common goal of slowing disease progression while helping residents live their most meaningful lives.
But that’s not the goal of a dementia ward. Staff are mostly casual and are employed to fill out paperwork, provide meals, assist with showers and do laundry. Slowing disease progression and life enhancement are generally not a primary consideration.
This model is outdated when you consider the science.
According to numerous studies and confirmed by my aunt’s geriatrician, the only way to slow dementia is through socialisation and exercise. Some of the most commonly prescribed drugs for Alzheimer’s may reduce symptoms but do not slow disease progression. Anti-psychotics and sleeping tablets can make confused people more docile and easy to manage but can also be harmful for people with dementia.
So why have staff members asked the nurse to tell the doctor, who visits once a week, to put my aunt on sleeping tablets? Why are the three group physio sessions my aunt can attend each week all scheduled at the same time as the 10.30am morning activity, which is often a movie or a scenic bus trip to a public toilet?
The answer, I believe, is not due to malice. It’s because budgets are tight, and in-depth knowledge of dementia beyond basic care requirements aren’t necessary when resident safety is the priority.
Sign up to Afternoon Update
Free daily newsletter
Our Australian afternoon update breaks down the key stories of the day, telling you what’s happening and why it matters
Enter your email address
Sign up
Privacy Notice: Newsletters may contain info about charities, online ads, and content funded by outside parties. For more information see our Privacy Policy. We use Google reCaptcha to protect our website and the Google Privacy Policy and Terms of Service apply.
I should point out that my aunt’s aged care home is by no means a bad one; there are many kind staff members who go out of their way to chat with residents and display kindness, and it came recommended by her doctor as “one of the two good facilities in our area”.
This is just what dementia care looks like in Australia for people who aren’t rich.
And while I am grateful, I am hoping for improvement.
In larger cities, there are a few facilities better suited for people who have dementia. They have a maximum of 10 residents in each ward to reduce resident overwhelm, a high level of dementia-specific training, and a 1:4 ratio of regular staff to ensure relationships can be built. Daily activities are based on the residents’ interests and physio programs are scheduled at times that suit. But at often prohibitive costs, who can afford the privilege?
So in my dreams, I continue to do equations I cannot balance. What should I attempt to change within a system that doesn’t want to change, and in many ways can’t afford to? How can I help my aunt when I have so little control over her routines and what the facility prioritises?
In a user-pays system, perhaps all I can do is tend to the small moments: enjoying our daily walks, listening to her stories and dancing in elevators. Because one day, not too far in the future, we won’t have even that.
Denise Mills is a writer and senior accountant based in regional New South Wales