‘A constant state of high alert’ – Sharon on caring for her mum with dementia

People often talk about losing their loved one to dementia because the person no longer recognises you as their spouse, child or friend. In that respect, I’m grateful that Mum always knew who I was – other than once when she thought I was the actor Magda Szubanski. Maybe she was making a connection between my name and Magda’s character Sharon Strzelecki and wanted tickets to my cabaret!

I’m also grateful that she was always able to remember my landline telephone number so that she could easily call me whenever she was frightened and disorientated. This often occurred around 2 or 3 am when she didn’t know where she was or thought she was stuck at a rock concert or inside the Myer Christmas windows.

At the time, I thought she was dreaming because these sorts of calls would only happen at night. Throughout the day, she’d be fine. I didn’t really recognise it as dementia at first. I suppose I always thought forgetting things was dementia.

Ultimately, I put a landline phone by my bed to make taking the overnight calls a little easier. Once, Mum called me 18 times and each time I tried to answer as brightly as I could. I never mentioned that she’d already called. I’m not sure I’d have the patience for even 8 calls from anybody else let alone 18, but it’s amazing the depths of resilience and strength you can muster when someone you love really needs you.

Discovering dementia

Mum deteriorated slowly at first and was quite interested and active in trying to work out why she would sometimes ‘see things’ only on some nights. Because she was otherwise her normal self, it was hard to recognise that she had early signs of dementia. We probably wasted a lot of time with Dr Google.

Eventually, Mum’s condition worsened and my sister, who lived close by to Mum, took her to hospital. From there, the whole process kicked in of waiting for an assessment and diagnosis, learning that she couldn’t return home, and then eventually waiting for a nursing home. We had 6 months from her diagnosis to her passing at age 96. In that time, COVID restrictions came in and out of force, so some weeks, seeing Mum was impossible – I lived an hour away.

Mum’s dementia was a mixture of vascular dementia and dementia with Lewy bodies. Lewy bodies can mean acting out aggressively. Although Mum never did behave in that way, I would say she did somewhat transform from a very quiet, observant, gentle lady to one more inclined to express her feelings and opinions. She did, however, often experience the hallucinations associated with Lewy bodies, such as seeing people painting and renovating her lounge room.

Learn more about dementia, including its early signs.

Having the diagnosis of Lewy bodies also had the potential to impact her being accepted into a nursing home. The one we were waitlisted for – and the one she ended up moving into – had to first determine whether they wanted the risk of any physicality from Mum. This was just another stressor along the road of caring for her.

Balancing care when your loved one has dementia

While my 2 sisters provided a lot of practical care, I took on more of Mum’s emotional and logistical care. I was in constant contact with Mum over the phone. Though when she was in hospital, getting calls put through to her was a challenge, especially when she didn’t understand to answer the phone. At one point, I learnt that 5 am was the best time to call – when things were a bit quieter and the night nurses could tell me how her night had been.

I also visited Mum on weekends when COVID restrictions didn’t make it impossible, and I was her power of attorney. When it did eventually become clear that dementia was the reality, I found myself trying to work out nursing home financials and understand how aged care works.

I was in a constant state of high alert. Was the phone going to ring? What was going to happen next? Working in the financial sector, I was used to being in a high-pressure environment. But this was far more personal because it was my mother. I had also never been around dementia before.

Finding support as a carer

I had the amazing experience of counsel from Dementia Australia. I called them for practical advice about Mum, which they gave. But they also offered emotional support in what ended up being a very lengthy and unexpected counselling session. It was the only time I allowed myself to cry and I’m extremely grateful to them. I’m also lucky to have a wonderful husband who loved Mum like his own, and supportive close friends who helped me through.

For other carers in a similar situation, I think it’s important to get practical and emotional support from somewhere or somebody. Talk to your friends or family or your partner – whoever you are close to.

How Mum sounded when she would ring me, thinking she was lost, was so distressing. I needed my support network.

Thinking ahead – lowering dementia risk

It’s hard not to worry about dementia being a part of my future. Before Mum’s diagnosis, I had no idea there were things you could do to lower your risk of dementia. But since retiring from my mentally stimulating but physically sedentary career, I’ve tried to keep my brain as active as I can and have increased my physical activity a great deal. My husband and I try to keep a healthy diet and keep very socially active with friends too. I know these are all important actions to lower my risk.

Although I wouldn’t wish dementia on anybody, in some ways being with Mum through her experience of it was an incredible honour.

Learn how to care for your brain and when to see a doctor if you are worried about brain health changes. Get brain health information.