Learning > Inspiration

Self-study, research to understand mum's dementia

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Jose Hong on 14 May 2018

The Straits Times

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When Ms Jasmine Chua's mother, Madam Tan Mui Im, returned from a holiday at the end of 2005, she suffered a mild stroke.

 

Soon after, Ms Chua, 46, noticed drastic changes in her mother.

 

Madam Tan had mood swings. She became paranoid, thinking that people wanted to steal her money. She would say the same things over and over, and she would hide food in the toilet.

 

When the family was told Madam Tan had been diagnosed with dementia, Ms Chua, who has five married siblings, said the overwhelming feeling she had was not sadness or anger, but confusion.

 

"I called many places to ask questions but hardly anyone had answers for me," said Ms Chua, who quit her job as a clinic assistant last August when her father died.

 

She said that though she had worked in a clinic, the general practitioners there did not know much about dementia and referred her to Google or the library, which did not have the material she needed.

 

Also, she could only get an appointment with a specialist more than one week after calling.

 

"But who can I call at midnight when problems are happening?" she said.

 

Dementia patients can exhibit a behaviour called "sundowning", where they become agitated in the evening. As a result, Madam Tan, now 83, would often be up at midnight.

 

"I would want to sleep and my mother would throw pillows at me to wake me up and talk to me," Ms Chua said. "I would be sleeping for six to eight hours - per week."

 

The role reversal of becoming her mother's carer frustrated her immensely, and Ms Chua would often get angry at Madam Tan.

 

"I cried until I had no more tears left," said Ms Chua, who is single and lives with her parents.

 

Still, she persevered and did her own research on dementia.

 

"Over the years, I ordered 20 to 30 books which cost around $30 to $60 each. And I have attended between 70 and 100 conferences and talks," she said.

 

She reads voraciously and even takes online courses on dementia to continuously improve her knowledge about the mental condition so that she can be a better caregiver.

 

In the day, she finds ways to keep her mother occupied and entertained so that Madam Tan will not nap for too long and become restless at night.

 

For example, she would mix beans of different colours - red, green and black - together. She would then get her mother to pick out the green ones for cooking green bean soup.

 

When asked how long this would keep Madam Tan busy, Ms Chua said: "It really depends. Sometimes 10 minutes." And then she needs to find another activity.

 

"Every day I must earn my mother's trust again," said Ms Chua.

 

Throughout the interview, she laughed a lot, preferring to see the funny side of her mother's actions, such as storing food in the closet, or still thinking she is in the 1960s when food cost less than $1.

 

Having a good laugh helps keep her sane, she shared.

 

Yet, she said the emotional turning point for her came when she realised she could not change her mother's dementia and that she had to change her own outlook.

 

"I started volunteering and joined caregiver support groups," she said. Among other things, Ms Chua is now an adviser for a website called ProjectCare, which celebrates caregivers and provides a network for them to support one another.

 

Through ProjectCare, she helps to manage a WhatsApp group of caregivers who can contact and seek help from each other at any time. This was the kind of support she needed when her mother was first diagnosed with dementia.

 

Nowadays, happiness helps prevent her mother's mental health from deteriorating further.

 

Did Ms Chua do anything special on Mother's Day yesterday?

 

"I know that it was Mother's Day but... we did nothing different because every day is Mother's Day to me."

 

Source: The Straits Times © Singapore Press Holdings Limited. Reproduced with permission.

 

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