'I’m a carer for a family member with dementia. Here’s what I wish people knew.'

When my aunt came to live with me after her dementia diagnosis, I had a vague idea of how life would change.

I knew there would be forgetfulness and confusion. I knew we would need to keep a watchful eye on my aunt when she tried to use the stove, distract her when she wanted her car keys, and dispense her medication daily. What I didn’t know was that within an already flawed aged care system, people would forget my aunt’s humanity.

My aunt is my late mother's twin and has no children of her own. We suspected something was wrong when my aunt, who prior to retirement worked as a bookkeeper, became confused by the process of paying her rent. 

There had been minor incidents prior to this: unlocked doors; repeated questions; and her sudden fixation on checking maps before any upcoming local event. But the rent incident was what prompted my brother to encourage Aunty to see a doctor.

What is dementia? Post continues after video.

She initially spoke to a GP, and was then referred to a psychiatrist who conducted several tests – connect the dots, draw a clock face, basic recall questions – and advised that based on the results it was likely she had dementia. 

An MRI confirmed atrophy of the brain. He prescribed some medication, which she overdosed on days later, leading to a late night visit to the emergency department where she vomited into a sick bag for four hours in the waiting room.

At the recommendation of the psychiatrist and with my aunt’s consent, my brother obtained Enduring Guardianship and Power of Attorney as a safety net before things progressed, and together they moved 170 kilometres to live with me.

Space is tight, and with not enough bedrooms my brother sleeps in the lounge area. When one of us is at work, the other sits with Aunty, reminding her to eat lunch and distracting her from waves of moodiness that never existed prior to the diagnosis – like tears over damp towels or an almost-empty tube of toothpaste. 

Any comfort we provide is forgotten as soon as it’s given, so we've learnt to change the subject, suggest a walk, or put on Father Brown, her favourite TV show.

In our minds, this was always going to be a temporary solution. My aunt and brother would move in with me, and soon enough we’d find an excellent aged care home in the area, and we’d pop Aunty on the waitlist. In six months or so she would be allocated a room, she would settle in, and we would visit regularly. It's only in retrospect that I can see how naïve we were.

Before searching for a suitable aged care home, we needed an assessment from ACAT (Aged Care Assessment Team). After a month-long wait, an assessor came to my home. We sat at the dining room table while she asked my aunt questions and conducted tests similar to the psychiatrist. 

Aunty failed to remember the words "apple", "table" and "car", and struggled to draw shapes she was asked to copy from the booklet. But before we could get the referral number we needed, the assessor had a series of questions for me. 

She looked up from her notes and asked, "Is she an inconvenience to look after?" I spluttered, ummed and ahh’d, afraid that if I didn’t say the truth, she would be denied the number. Eventually, I answered: "Yes."

The woman continued her questions, and I thought I saw Aunty’s eyes well up. People with dementia might be forgetful and moody, but they are individuals, and like everyone else they can be terribly hurt. 

Sometimes my aunt listens to conversations intently, contributing interesting facts or jokes and displaying the full breadth of her intelligence and humour. Other times she zones out completely. This was one of the rare times I was hoping for the latter.

After we received the magic referral number, ACAT advised that despite Aunty being ready for care she had to agree to placement. It turned out that those bits of paper – the Power of Attorney and Enduring Guardianship – meant very little. Now, when we approach her on the subject of going into a home she says, "The dementia hasn’t affected me yet. I think I’ll wait until it does."

But she’s happy to look around. On one tour, a sharp grey bob and the air of a school mistress asked bluntly, "Is she an absconder?" My brother and I said no, while Aunty made a noise between a scoff and a laugh. That night, she playfully announced: "Good night. I’m going to abscond to my room."

Tully Smyth spoke to Mia Freedman about her mother's battle with dementia on No Filter. Post continues after podcast.

Days later, we visited a respite centre that provided activities from mid-morning till after lunch on weekdays. Aunty was sitting beside me, colouring-in, when the carer leaned forward and asked, "So how far gone is she? Some of them get pretty bad."

Through these encounters, I’ve discovered that the system has forgotten to prioritise something fundamental: That all people, regardless of their age and medical condition, should be treated with kindness and respect.

So far, I’ve failed to stand up for Aunty. But in my head, I’ve said it over and over: Do you know that people with dementia can hear what you're saying? Do you know they have their own unique personalities, and are worthy of respect?

One day, I will find the courage to say it out loud.

Feature Image: Canva.

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