Nothing beats the familiarity of home – your sanctuary.
The well-worn pathways from the kitchen – the heart of home, where your family gathered while dinner was being prepared and coffee brewed – to the living areas where you listen to music, read magazines or do the crossword while curled under that blanket you picked up on that trip to Byron Bay.
Your bedroom – full of familiar scents and your favourite slippers. Your comfortable at-home clothes in the drawer to the left of the queen-sized bed where you always sleep on your side. Your bathroom with toilet paper a familiar reach away on the left-hand side and the mat you’ve stood on for decades warming your feet.
This is home. These are the things we take for granted.
Your family. Separated by breakdowns and now a blended, extended network of friends that are family and others you never see. The people you trust most with your secrets and your stories. The children and grandchildren who know you only as a parent or grandparent – the guardian of the family.
Your name. Given to you at birth years ago but adapted over time. Perhaps changed and unfamiliar to the one on your licence or birth certificate but it’s your preferred name and the one everyone who knows you calls you. It’s the one you respond to.
This is who you are. This and so many other elements are the absolute essence of you.
Why do I share this with you? Because the greatest honour we can give to those in our care is knowing the person. Knowing their story. Knowing all about them.
Yet not having access to the information on the very things we take for granted remains a core reason behind changed behaviours among people with dementia living in aged care.
Undoubtedly on entry into every residential aged care setting, there is a process to collect information about the person who will be living there. Perhaps a form with key questions about where that person grew up, what they did for a living and their preferred name.
All good-to-know details but we are much more than this. The form is then likely filed. Perhaps some of that information is entered into a care plan. But not always.
Imagine yourself now going from your home where everything is familiar into a space with people you don’t know and probably wouldn’t choose to live with.
Into a place where the bed is strange, the toilet paper is on the right-hand side and the tiles are cold. A living space larger than your whole home filled with strange high back chairs that tip backwards and have people sleeping in them, and long dining tables with unfamiliar chairs and dusty flowers.
They don’t know you are always called by another name
You can smell food but can’t see where it is coming from. You are thirsty and hungry but your cup of tea and stash of biscuits aren’t anywhere in sight – you used to be able to access these as desired. Then someone rushes past you and asks if you are okay, calling you by a name that is yours, but also isn’t.
Are you scared? A little anxious? Were you startled by the amount of people in your personal space? Does that anxiety make your cortisol levels rise? Can you feel your heart pound, but not tell anyone why?
The words won’t come out right so you make the only noise you can – you cry out loudly for help. ‘Take me home.’ ‘I want my mother.’ ‘Let me out.’ You head to the doorway where strangers are bustling in and out and try to leave.
One of the strangers pats you and leads you away but you don’t want to go with her. She’s not your family or your friend. That’s not your name. This is not your home. You grab her arm to ward her off. She grabs back.
We – as a sector – can do better
Another stranger comes into your space. And other people are looking at you. ‘You live here,’ they tell you. But you’re not stupid. You know you don’t, and they don’t know you.
They don’t know you.
They don’t know you are always called by another name. They don’t know you spend every afternoon in the garden with a cup of tea. It’s a routine you’ve enjoyed without fail for decades. Rain or shine.
They don’t know your room is missing your favourite blanket. They don’t recognise you are grieving the loss of the life you had in the space you call home. In the space you feel safe.
But we – as a sector – can do better. We can ensure we use the information we receive when people enter care in a better way. It is not a piece of paper to be filed. It is the story of the people whose care we are entrusted to provide. It is the opportunity to be partners in care; to be relational in the care we provide.
As we move into 2024 let’s make a commitment to know the people in care better. To take their stories and turn them into true plans for how we provide better care. To know that sometimes a cup of tea shared between new friends might be the way to get to know the person beyond ‘the resident’.
Marie Alford is head of dementia professional services at The Dementia Centre, HammondCare
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