As one of Australia’s most popular tech and gaming personalities, Stephanie Bendixsen is used to letting her imagination run wild. But when a loved one was diagnosed with Alzheimer’s disease, she had to learn to embrace a whole new reality — her mother’s.
No onewanted to believe it was Alzheimer’s.
My mother Wendy’s diagnosis was a difficult process that was drawn out over many years. Deep down, I think I knew what it was early on, but there often isn’t a direct route to diagnosis, and of course my father wanted to rule out every possibility that it might be something else. There was a bit of denial involved, as you can imagine.
In the beginning, we’d pass her behaviour off as ‘moody’ or careless. She got so angry all the time, and we’d end up fighting with her. It wasn’t like her.
Little things in her day-to-day routine started to change. She got funny about leaving the house, refused to drive beyond the shops or the train station, and would forget where she’d parked the car, so we’d have to help her find it.
She had always been fastidiously tidy. Having worked as a nurse, she was particular about cleanliness — and yet the house started to fall into disarray. She would start things and never finish them. She wouldn’t put things away. Stacks of paper and random objects started to pile up everywhere.
These were just small, annoying things that you don’t immediately associate with Alzheimer’s, but now, of course, we know that was the start of it all.
Mum undertook cognitive tests, but she would get so nervous and flustered in the doctor’s office that they could never be entirely sure if she was struggling to answer because she couldn’t, or because she was just overwhelmed by the pressure of the situation. That said, she often couldn’t recall the date or even the year.
She went to psychologists and treatment centres for anxiety and depression, and she was placed on a wide range of medications — antidepressants and the like. In those early years, while she was still so lucid, it seemed impossible for all of us to face the reality of what was happening to her.
It seemed impossible for all of us to face the reality of what was happening to her.
But I would have conversations with Mum about huge, memorable life events — things like the news that my sister was having a baby — and then I would have to have that conversation with her several more times. You can’t put that down to anxiety.
The more we tried to help her, the more she resisted. She became angry, mercurial, aggressive. It was really tough, watching someone you love change so completely.
Of course it was heartbreaking when she was finally diagnosed, but in many ways, it was a relief to finally have our suspicions confirmed.
Mum never really faced it openly. She didn’t talk about it. She knew she was unwell, and she felt as though she was a terrible burden to us all, but by then I think she had already advanced to a point where she was slipping beyond any broader understanding of her situation.
She was often very emotional without fully understanding why she felt the way she did. It was extremely hard for all of us — she knew something was wrong, but day by day, she was losing grasp of her ability to process those thoughts.
Dad took her diagnosis the hardest. He shared his life with her, of course, so he faced it every day. He tried so hard not to get frustrated with her, but she was so combative and all he was trying to do was help her.
Here was his life partner, the woman he loved, had committed to, and had envisioned growing old and retiring with. Suddenly, all of that had been taken away from him as he became her carer, and she fought him so often. That was the disease, of course, and there were still moments of happiness and lucidity.
It’s not easy to communicate with someone living with dementia. For me, the turning point was understanding that engaging with her meant accepting a new reality. There was a temptation, initially, to correct her when she made statements that were untrue or didn’t make sense, or conjured up memories of things that never happened.
I had this tiny hope that if I corrected her, there would be some glimmer of understanding, and she’d say, ‘Oh yes, I remember now!’ But even if she did say that, she would usually be lying to save herself the embarrassment. More likely, though, she’d get angry and argue the point.
As soon as I gave myself over to the reality of the world in her mind, the better everything was for us both. What did it matter if we never actually went to Mexico together, or planted that row of trees beside her window? What did it matter if she disputed us ever living in New Zealand? Whatever her reality was in that moment, that’s where we needed to be.
Whatever her reality was in that moment, that’s where we needed to be.
Arguing with her was pointless because she’d forget the conversation in a few hours anyway, and our time together was too precious to spend arguing.
We all helped as much as possible. We had a carer come a few times a week to help as well. But Mum eventually reached a point where she required full-time care, and that was possibly the hardest decision we’ve ever had to make.
When she moved into her nursing home, it was tough to visit her. The staff were lovely and cared for her very well, but she had no long-term memory to tie herself to this new home, and so she floated around an unfamiliar world without really knowing where she was or why she was there.
After a time, I would see recognition on her face start to disappear when I came to visit — so I would say, ‘Hi Mum, I’m your daughter’, and she’d light up and hug me and tell everyone that we were family.
I took her for walks a lot while she was still mobile. Her nursing home was by the beach, around the corner from Dad, and enjoying the fresh air and scenery was the best way to spend time together. It lifted both of our spirits.
Eventually, though, taking her out of the nursing home made her scared and anxious. I tried to reassure her and tell her I was there to look after her, but things were happening in her mind I could never know or understand.
Things were happening in her mind I could never know or understand.
While this was going on, I raised $20,000 for Dementia Australia by running the City to Surf in 2017. I understood then why people put so much effort into fundraising for diseases they have a personal connection to — when it feels like nothing can be done to help your loved one’s personal situation, it’s a way to feel less helpless. It felt amazing to do something so positive in the midst of something so difficult.
In 2018, Mum passed away, and I felt a little unsure of what to do with my grief. A mutual friend whose mother also lived with the disease worked as a Dementia Australia ambassador, and put me directly in touch with the organisation. For me, it was a relief to think I could be a part of something meaningful to people going through an experience that I knew all too well.
My first visit to Dementia Australia was beyond surprising. I’m not sure what I was expecting, but I’ve been incredibly impressed with how they have embraced technology in such clever and forward-thinking ways.
They’ve created a VR experience designed to stimulate an environment from the perspective of a person living with dementia. It shows how depth perception changes; how objects morph into other shapes; and colours, light and shade blend into each other. The purpose of this is to help educate aged-care workers on what it’s like for someone living with this reality, and why they might be exhibiting certain behaviours.
A bathmat, for example, can be perceived as a great hole in the ground, so a person with dementia might decide to skirt around the edge of it.
The VR experience then guides you through the ways in which a domestic environment can be improved to assist that person in their day-to-day life. Things like using contrasting colours so a toilet seat can be easily identified (a white toilet on a white floor can be tricky for someone living with dementia to see); placing pictures on doors to indicate which room is which; and removing certain objects that might cause confusion.
These ideas can then be applied to the design of aged care homes, and of course our own home environments, so that our loved ones can be cared for at home for as long as possible.
They have also developed some beautiful digital art projections for display in aged care homes that are both calming and visually stimulating, and react to real-world movement and action.
Perhaps the most accessible piece of tech Dementia Australia has created is the app, ‘A Better Visit’. It’s basically a series of games — bright colours, things that react to touch, and fun, responsive and engaging activities that are easy to demonstrate and participate in.
One game requires you to cast a fishing line and reel in a fish when it bites. Another simply requires moving your finger over the screen to reveal the colour in an image. Some make use of your device’s gyroscope to move a ball through a basic maze into a hole. The idea is that you can participate in these activities together.
I honestly wish I’d had something like this app when I was visiting with Mum. As her symptoms progressed, she lost the ability to participate in basic conversation — she had no memory to draw from, so it made things difficult — but she could react to things in the moment. She existed in the moment. A visually stimulating activity like this, happening in real time, would have been perfect for her.
She existed in the moment.
Before Mum was diagnosed, I thought I knew about dementia. But when I was actually faced with it in my family, I discovered it is far more complicated than most people realise.
Most people think of dementia as something that only affects elderly people, and they don’t pay much attention to it because of that. But it doesn’t discriminate. It can strike young. It can rob people of their retirement years. It is the number one cause of death for women in Australia. But no one wants to think about it, so we shy away from educating ourselves.
If you’re going through this with a loved one, don’t be afraid to ask for help when you need it. A good support network is everything during experiences like these. Try your very best to be patient, and don’t take negative behaviour personally. We can never know what is happening inside the mind of someone who is going through this change.
Dementia affects everyone differently. Some people can live with it for many years, but for others, it can cause a very swift deterioration — so you should spend as much quality time with that person as you can, while you can, and make every visit count.
If you or someone you know is living with dementia and you need support, call the National Dementia Helpline on 1800 100 500, 9am to 5pm, Monday to Friday (excluding public holidays).
‘A Better Visit’ is now free to download for iPad and Android tablets. Further information about the app can be found at dementia.org.au/abettervisit.