World Alzheimer’s Day is on 21 September. It comes once a year. Dementia Action Week runs from 21-27 September, one week out of 52.
But caring for someone with dementia can mean being on duty for every hour of every day. It is an act of love, and it can be exhausting.
Margaret Wood has been caring for her mother, Gertrud, for the past 14 years at her Ascot Vale home.
“I describe it as a rollercoaster,” Margaret said. “Sometimes it’s funny, sometimes it’s sad, sometimes it drives you crazy. The emotions are constantly up and down.
“Mum is totally incontinent now, has no speech and requires 24-hour care, but our relationship is as good as it can be when a person has dementia and can’t speak to you.”
Gertrud (pictured above, singing) was born in Germany and arrived in Australia as a post-War migrant with her Yugoslav husband in 1949. After stints in the refugee facilities at Bonegilla and Maribyrnong, the young couple settled in Munro Street, Ascot Vale.
“My mother has always been a strong woman,” Margaret said. “They arrived with nothing and worked very, very hard.
“When I was younger I went and lived overseas, then returned with an English husband. For five years he and I lived with parents and we all got on wonderfully well.”
Margaret’s father was killed in a tractor accident in 1986. Margaret feels that Gertrud was never the same woman after being present for that trauma.
The awareness that her mother had dementia was gradual, triggered when Gertrud began to have some mobility issues. After diagnosis, Margaret took a progressively larger role in caring for her mother.
At the same time, Margaret maintained full-time employment as a Chef Manager for Spotless Catering – although that has been put on hold by the lockdown.
For many years she has been supported by Moonee Valley City Council workers who visited Gertrud to help her out of bed. Other workers would sit with Gertrud in the day and organise her lunch.
“To be honest, at times it has been very stressful. I do all of Mum’s showering.
“It can be a hard slog and sometimes you think ‘I just want to walk away’ – but deep down I know I never would. Those emotions are exhausting though. If you go away somewhere, you feel like you have been bad.”
Currently, there are more than 447,000 Australians living with dementia, and this number is expected to increase to almost 1.1 million by 2058.
“Dementia will impact most of us throughout our lives in one way or another,” Dementia Australia CEO, Maree McCabe said.
“It is time to bring that conversation to the forefront, and acknowledge the impact dementia has on those living with the disease, their families and carers and across the community.”
Margaret lives with the pressure of being her mother’s primary carer, but she is also her strongest advocate.
“People with dementia and with no communication skills seem to get pushed to the side. Some people think they don’t know anything anymore.
“But I’ve learned if you hold their hand, look into their eyes and ask them a question and wait, you will usually get an answer. They need people with them, and they need people speaking to them.”