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Kylie Knott

Dominica Yang started noticing changes in her mother’s behaviour in 2012.
“Mum had a sharp mind, but one day while preparing dad’s medication, she insisted on emptying the tablets from each packet and became obsessed with counting them. She kept losing count, which made her angry and frustrated,” says Yang, a Hongkonger, of her usually kind and gentle mother.
As the days and months went on, Alzheimer’s disease – a type of dementia that affects memory, thinking and behaviour – tightened its grip.
Yang, who before her mother’s diagnosis had no prior knowledge of the disease, was heartbroken.
“It came very suddenly and very dramatically, like a big cliff drop,” she says.

Yang became the primary carer for her mother, who died in 2016 aged 86 after a four-year battle with the disease.
This month Yang released My Mum Called Alzheimer’s, a book of conversations Yang had with her mother leading up to her death.
Available in English and Chinese, it is a short but moving memoir about love and loyalty that will have you reaching for the tissues.
What makes it different from other books on the subject is the diary format in which it is written. Some pages are even left blank.
“I wanted some pages left all white to make you focus on what she was experiencing,” Yang says.
Readers will also notice shapes on pages where a new chapter starts. They represent the “connectiveness” of her mother, who was represented by a circle. Thick, black circles represent the days her mother had clarity. Gray circles reflect days when the connection was weak.
One is a scribble, to match the chapter of the same name. “Scribbling very small letters is a classic symptom of Alzheimer’s,” Yang says.

What the book does best, however, is show the emotional roller-coaster that carers experience.
It documents good days: chats over tea and cake, shopping for clothes, and singalongs to the Elvis Presley hit Can’t Help Falling in Love.
Singing, Yang says, had a calming effect on her mother. “Sometimes I’d play the maracas for her – she loved that.”
Bad days reveal her mother’s difficulties swallowing, violent outbursts and memory lapses, during which she struggled to recall her own name. “For a time, my mum spoke in codes, using numbers and colours.”
Yang documents emergency hospital visits when her mother experienced breathlessness due to low blood oxygen levels.
In the moving final chapter, on day 1,733, Yang writes: “She’s gone. She’s finally at peace. No more tubes, no more suffering. She’s free. Mum, I know you’re smiling, I miss you.”

At a cafe in Hong Kong’s Central area, Yang talks about how the idea for the book came about.
“The psychiatrist, Dr M in the book, asked me to record any issues or incidents that I noticed with my mum so that she could make an assessment,” Yang says.
After her mother’s death, Yang stored the notes in a drawer as she was busy caring for her father until he died, aged 96. She also cared for her father-in-law, who died two years ago.
When Yang rediscovered her notes a couple of years ago, she shared them with her three sons, who had been living abroad during the four years Yang cared for her mother.
“When my sons came home to visit during that time [2012-16], I wanted it to be a happy time. I wanted them to enjoy the moments they had with my mother, so I kind of stage-managed it somewhat by not sharing all the details.”
Her sons encouraged her to do something with the notes, so Yang turned them into a book. She omitted sensitive details out of respect for her mother, who was “a very private person”.

While acknowledging that there have been breakthroughs in dementia medicine, diagnosis and treatment in the past decade, Yang urges carers to seek professional help as soon as symptoms surface. Early intervention can make a big difference, she says.
And remember that loved ones are still there deep inside, even when the illness has taken over, she advises.
“Don’t get angry or upset if the person does not recognise you,” she says.
More importantly, don’t give up. “If they feel that you’re there and can hear your voice, then it’s worth it.”
Familiar routines and regular stimulation are important for those dealing with dementia and depression, Yang adds. Strong bonds also help.
“If you are very close to the loved one who is suffering from Alzheimer’s or dementia, if you know their character, then you can help draw them out, because they tend to warm to familiar things,” she says.
“The more hobbies they have the better, because you can play with them so they don’t withdraw even further into that inner world … You don’t want them to feel alone because they can still see familiar faces, hear familiar voices.
“They might be confused, but in my case I never gave up. I always made sure I touched her, talked to her, whispered in her ear.”
Having good medical help and a carer support group is vital, she says.
“A lot of people are afraid to reach out, but it’s important to get help – and good help.”

Yang herself co-founded Hong Kong’s Brain Health Initiative in 2015, a dementia support group that provides a network for carers.
She hopes the book – from which royalties from sale proceeds at Hong Kong bookstores will benefit the Charles K Kao Foundation for Alzheimer’s Disease – not only raises awareness about dementia, but shines a light on the role of carers.
“Neither the carer nor the ‘lost’ one should be left to face this alone. Reach out for help,” she says.
“Never give up on trying to make contact. A message may get through, and that connection is priceless. Every moment is precious. Treasure it.”
Like what you read? Follow SCMP Lifestyle on Facebook, X and Instagram. You can also sign up for our eNewsletter here.


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Wellness

How a daughter’s love for her mother with dementia is captured in emotional memoir

Dominica Yang, aged one, with her mother. Yang’s new book - My Mum Called Alzheimer’s - features conversations she had with her mother leading up to her death, and is available in English and Chinese. Photo: Dominica Yang

Yang co-founded Hong Kong’s Brain Health Initiative in 2015, a dementia support group that provides a network for carers. Photo: Jonathan Wong

Yang (right) with her parents in Hong Kong. Photo: Dominica Yang

Yang, aged about four, with her mother. Photo: Dominica Yang

The cover of Yang’s book. Photo: Dominica Yang

Yang says no one should be left to face dementia alone. Photo: Jonathan Wong

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“Joy is right here, and it will always find you,” says Dr MaryCatherine McDonald. Photo: MaryCatherine McDonald

McDonald’s new book offers tools to help find a way to experience joy again. Photo: Amazon

Childhood memories are a powerful way for us to reconnect with joy, McDonald says. Photo: Shutterstock

A post on McDonald’s Instagram account. Photo: Instagram/mc.phd

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The writer’s late mother strokes the family cat Mr Puss. Among adults already diagnosed with Alzheimer’s disease, pet ownership was found to have a positive effect on daily living function, mood and mental health. Photo: Anthea Rowan 

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Lifestyle

Health & Wellness

Health

Family & Relationships

Dominica Yang’s new book recounts the rapid development of Alzheimer’s disease in her mother and gives important advice for primary carers


Dominica Yang’s new book recounts the rapid development of Alzheimer’s disease in her mother and gives important advice for primary carers.


How a daughter’s love for her mother with dementia is captured in emotional memoir

.css-1c6uqr6{color:inherit;font-weight:inherit;font-size:inherit;font-family:inherit;line-height:inherit;overflow-wrap:break-word;}Dominica Yang’s new book recounts the rapid development of Alzheimer’s disease in her mother and gives important advice for primary carers

Dominica Yang’s new book recounts the rapid development of Alzheimer’s disease in her mother and gives important advice for primary carers