Never alone – How this family navigates their mum’s dementia

Up until Mum was about 77, she worked in Dad’s optometry shop in Malaysia. They moved to Australia when she was 80, settling in a flat in Melbourne near their children.

Mum has always been quite sociable, and she was very active with the Chinese seniors’ group in her community. She loves cooking, playing Mahjong and singing along to Chinese music.

We started noticing changes in Mum when she was in her early 80s. She was an excellent cook, but she started mixing up ingredients and forgetting steps in her recipes. Slowly, things got worse and Dad had to watch her to make sure she didn’t leave the stove on and burn the house down.

We also noticed her repeating questions and comments. Mum loved to keep people fed, but after a while, when we’d visit, she’d ask ‘Have you eaten?’ repeatedly.

Gradually, she forgot to shower, then she started to experience incontinence.

The GP referred her to a geriatrician who spoke her language and the diagnosis process was simple and non-evasive. We learnt that she has vascular dementia.

Learn more about dementia, including the symptoms and common causes.

It was hard to accept initially. It was like the mum we knew had died. But sometimes, the person we used to know surfaces momentarily. Unfortunately, these occurrences are rare nowadays.

Dad remained her carer until he couldn’t anymore. He fell over and broke his hip and had to go into a nursing home. Thankfully, Mum decided to move into the nursing home with him.

Dad passed away a couple of years later and Mum remained in the nursing home, where she still is now at 90 years old.

Balancing Mum’s care

I am the eldest of 4 siblings. I have 2 younger brothers and a sister. We have a roster so Mum always has at least one person visit her every day. I visit every Monday, Tuesday and Wednesday. I also manage her finances and the bulk of her medical appointments.

The others buy her supplements, cook her favourite food, organise her clothes, update her music on a USB and do whatever else needs doing. It never feels overwhelming. Things just get done by whoever happens to be there when they need doing. Our family is very supportive and decisions are made jointly.

We considered the option of Mum staying home with one of us but decided that it would be too difficult to manage. We agreed that the best care is for Mum to be in a nursing home.

She is generally happy in the home and the staff are warm and kind. She has 5 good meals and snacks a day, and all her practical requirements, like showering and toileting, are met. There are plenty of activities to do and a lot of other Asian residents, so she always has someone who can speak her language.

Understanding dementia

With Mum’s dementia, there’s a bit of guesswork at times. She’s never been one to complain and we can’t rely on her telling us when something isn’t right. She might flinch while eating because her gums are sore, but then say she’s fine. So, we read her body language and guess what’s bothering her. There is good and prompt communication regarding Mum’s mostly medical issues between her 4 children and my sister-in-law, so issues are followed up and resolved quickly.

I try my best to agree with her, even when she has things confused. She’ll say: ‘Where’s Dad’ and I’ll say: ‘He’s sleeping’. Then the next minute, she’s forgotten. I don’t think it serves any purpose to upset her.

There have been times she has been aggressive and refused to sit with one of the residents. Mum would be horrified if she knew about her uncharacteristic behaviour, but I’m told the dementia can play out this way. Recently, she appears to have calmed down. We take it as it comes.

Planning for my future

Mum’s experience has made me realise that I need to minimise my risk of developing dementia. I am conscious but not fearful. I know of things I can do to lower my risk, and I am doing them now – exercising regularly, eating a healthy diet, keeping socially active. I am learning Mandarin, piano, philosophy and dancing, and am planning to learn the drums when my piano skills are up to a good standard.

I also embrace technology and ensure that I try to fix any technical issues on my phone and computer before enlisting help from my sons or nephew.

Seeing dementia take hold of someone you love is difficult. I can’t have a proper conversation with Mum anymore. But we all make the most of the time we have with her. My brother, sister and I have lunch and then play Mahjong with Mum every Wednesday. She doesn’t play correctly anymore, but we let her play her way and have a good laugh together. It’s about just spending time with her, no matter her mood. She can still remember the words to all the songs she loves so we sing along with her, when we know the words.

Fortunately, I’m philosophical about Mum’s condition. A few of my friends lost their mums in their 50s. We feel so lucky to still have our mum in her 90s.

Learn how to support your brain health and reduce your risk of dementia.