Living with dementia

'Love has no boundaries'

How an ordinary couple met and fell in love - and how dementia tested their relationship

Steven and Lai Quen on a study trip to Taiwan last November, along with five others with dementia and their caregivers. The trip was organised by the Alzheimer's Disease Association and the Lien Foundation. Steven leading a toast at dinner during the
Mr Steven Lau, who was studying accountancy, and Ms Wong Lai Quen, who was majoring in chemistry, met at a hostel cafeteria in the late 1970s when they were undergraduates. PHOTOS: COURTESY OF THE LAU FAMILY
Steven and Lai Quen on a study trip to Taiwan last November, along with five others with dementia and their caregivers. The trip was organised by the Alzheimer’s Disease Association and the Lien Foundation.
Steven and Lai Quen on a study trip to Taiwan last November, along with five others with dementia and their caregivers. The trip was organised by the Alzheimer’s Disease Association and the Lien Foundation. ST PHOTO: NG SOR LUAN
Steven and Lai Quen on a study trip to Taiwan last November, along with five others with dementia and their caregivers. The trip was organised by the Alzheimer's Disease Association and the Lien Foundation. Steven leading a toast at dinner during the
Steven leading a toast at dinner during the study trip to Taipei last November. Now 63, he was diagnosed with dementia at age 58. ST PHOTO: NG SOR LUAN
Steven and Lai Quen on a study trip to Taiwan last November, along with five others with dementia and their caregivers. The trip was organised by the Alzheimer's Disease Association and the Lien Foundation. Steven leading a toast at dinner during the
Text messages between Lai Quen and Steven. ST PHOTO: NG SOR LUAN
Steven and Lai Quen on a study trip to Taiwan last November, along with five others with dementia and their caregivers. The trip was organised by the Alzheimer's Disease Association and the Lien Foundation. Steven leading a toast at dinner during the
Lai Quen waiting for Steven to catch up during their trip to Taipei last year. The trip showed them how the Taiwanese juggle between supporting their loved ones with dementia and respecting their voice by empowering them to do dementia advocacy work. ST PHOTO: NG SOR LUAN

She was that quiet first-year student having a late lunch in the cafeteria of the Dunearn Road Hostel for undergraduates at the University of Singapore.

Lai Quen was a chemistry major, and her lab lessons often ended late, so she would eat at about 3pm when the canteen was largely empty.

Steven, a gregarious and cheeky Year 3 accountancy undergraduate, took the chance to walk up and sit next to her. Their friendship started with small talk.

He found himself looking forward to finding her in that corner of the cafeteria. Sometimes, he would skip class to catch her there.

Weeks went by and they found that they could talk about anything with each other. Love blossomed.

Lai Quen liked him for his pragmatism and frugality, as well as his loving and loyal nature, while he appreciated her patience and willingness to accept him despite his temper.

Over the years, some traits persisted while others have evolved.

For instance, Steven's temper has become worse with the onslaught of dementia as he feels irritated and angry with himself for lapses. Lai Quen tries to respond with forbearance and tolerance.

He used to shower her with hugs and kisses, but these days, she is the one initiating gestures of affection to make him feel more secure.

"He feels lost and needs love and assurance," said Lai Quen. "Love is about patience and about security. It has no boundaries."

You can leave me in the forests of Kuantan when the day comes that I no longer recognise you, Steven used to tell his wife, half jokingly, after he was diagnosed at age 58.

 
 
 
 

Kuantan, on the east coast of West Malaysia, is where the Lau family goes every year to visit a friend.

Over the years, the location of the supposed abandonment became farther and farther. Kuantan became Thailand. Thailand is now Vietnam.

At first, Lai Quen rushed to reassure Steven that she would not leave him to fend for himself.

Later, she began to tease him.

"You won't die in the forests there because you are army trained. You can use the stars and rivers to navigate your way out," she would banter.

But the jokes gradually became darker. Why Vietnam? Because there are many land mines there and I will not come back, he said.

Steven's fear of abandonment is not uncommon. Dementia strips a person of his identity, leaving him to feel vulnerable and insecure.

Research shows that about 70 per cent of people with Alzheimer's disease have delusional thoughts at some point.

Of the common paranoid delusions that may follow a diagnosis, the one most stressful on a marriage is the false belief that one's spouse may be having an affair.

Lai Quen, 62, hardly talks on her mobile phone these days because Steven follows her around, pestering to know who has called her. She tries to communicate by text instead.

She found she was not the only caregiver to suffer this.

Ms Lynda Teo, 62, whose husband also lives with dementia, told her she, too, was often unfairly scolded and accused of having an affair. When Ms Teo, a corporate secretary, asked the doctor about this behaviour, he said her husband was afraid she would leave him.

The delusions seem so real to the person experiencing them that no amount of reasoning or explanation can convince the person of their spouse's faithfulness. For the spouse, even knowing why such suspicions arise may not ameliorate the emotional trauma on the marriage.

Often, the accusations are attempts to wrest sole attention from their wives.

For Steven, 63, the rival for his wife's attention became her younger sister.

Her sister, who is single, had lived with them for 15 years when Steven issued an ultimatum to Lai Quen in 2015: "Either she goes or I do."

He claimed she had prevented his mother from coming to visit him.

"At first, I was very hurt and confused. How could I do this to my sister? But later, I realised it was his insecurities that were surfacing," said Lai Quen.

Her sister graciously understood the situation and packed her bags to leave. Lai Quen and her daughters bade a teary farewell to their beloved sister and aunt.

It is eye-opening for Lai Quen to realise that dementia is not just about memory loss but a multi-faceted attack on a person's identity.

Many persons with dementia also display shadowing behaviour, wanting to stay physically close to their care partner as it makes them feel safe in an increasingly incomprehensible world.

Steven even prefers not to go anywhere with his daughters if Lai Quen does not come along.

Knowing all this, she began doing things that would make her husband feel more secure.

For example, she makes it a point to reply to his text messages immediately. Despite having taken another job in her retirement with information and communications technology company NCS two years ago, she makes sure to leave the office by 7pm so they can have dinner together.

Trying to strike a balance between empowering a person with dementia - by offering him choice and giving him agency - and shouldering the possible consequences is no mean feat.

Despite the impairment to his judgment, Steven refuses to give up driving. Lai Quen also believes letting him drive helps maintain his cognitive and motor skills.

So, she is now his eyes and ears on the road.

Some may view it as a reckless indulgence, but Lai Quen sees it as an acceptable compromise.

Last November, Steven and Lai Quen, together with five others with dementia and their caregivers, took a week-long study trip to Taiwan.

Organised by the Alzheimer's Disease Association (ADA) and the Lien Foundation, the trip showed them how the Taiwanese juggle between supporting their loved ones with dementia and respecting their voice by empowering them to do dementia advocacy work.

Some of the dementia self-advocates there formed a dementia advisory group last year to advise the Taiwanese government and others on dementia-related services and policies.

During the study trip, Steven and Lai Quen also learnt that three-quarters of dementia sufferers in Taiwan have only a mild stage of the disease. Four in every 10 people with young-onset dementia also continue to hold a full-time job.

Said Lai Quen: "There are still so many things they can do, but people often only see the things that they cannot do."

DEMENTIA SELF-ADVOCACY: AN OXYMORON?

It seemed like a joke - get people who have dementia to advocate for themselves. Really, them? People with scrambled minds, who cannot remember what they ate for lunch, or do up their buttons? How could they possibly speak for themselves?

Indeed, dementia is often synonymous with loss. The loss of one's memory, speech and identity. The loss of relationships as one knew them.

Ms Ruth Wong, 59, who started the Voices for Hope programme at ADA early last year, said being an advocate rewrites the narrative of loss that inevitably comes with a diagnosis of dementia.

"They gain a new identity and purpose in sharing their stories with others for a larger good and which is empowering, both for themselves and for others to model after," said Ms Wong.

Advocacy is about owning one's life and voice, or helping someone else reclaim theirs. The Voices for Hope programme is meant to train persons with dementia and their caregivers on how to speak up and share their dementia journey with others.

Sharing their stories is the beginning of the journey of a self-advocate. Thereafter, some, often with caregivers as joint advocates, may reach the next stage of advocacy: Articulating their needs to guide dementia policies and services.

Ms Wong shares with caregivers the importance of advocating with and not for their loved ones.

Even if someone with dementia is unable to do certain things, the caregiver will offer the person the option to try.

If Steven is giving a talk and digresses, or fails to address a question, for instance, Lai Quen does not interrupt or cut him off.

She believes that "advocating with" her spouse extends to the minute details of mundane life.

Steven is slowly losing his motor skills, and if he drops food on the table during mealtimes, she quashes her reflex to help him.

His sense of confidence, she reasons, can disappear more quickly than cleaning food off the tabletop.

Through the couple's involvement in ADA's activities, Ms Wong noticed Lai Quen's respect for Steven, how she constantly strove to affirm him - inviting his partnership in making decisions and treating him as an equal - and her insights into dementia.

Seeing that both were articulate and amicable, Ms Wong approached them to join Voices for Hope, where they would learn to be advocates.

Lai Quen said "yes" because she wanted Steven to remain as active as possible.

Advocacy is a word his mother's generation would never have heard, said Steven.

His mum too, has dementia. So did his nanny, the person who looked after him when he was young. He was the closest to her before she died at the age of 99.

Having become fatherless at a young age, Steven gained a strong sense of independence and justice.

His mother's second marriage upset him so much that the teenager moved in with his grandmother and vowed to put himself through university, rather than take money from his stepfather.

During racial riots in Singapore in the 1960s, he witnessed his cousin being slapped so hard by Malaysian soldiers that he lost his tooth.

It made such an impression on him that when he was called up for national service, he appealed to be deployed as an officer, instead of the desk job his kidney condition qualified him for. It was approved.

Four decades later, he carries that same desire for justice for the marginalised and vulnerable.

"I am not ashamed to have dementia, and I need to speak up because somebody has to champion it," said Steven.

Dementia stripped away all of his identity and achievements. Like death, it is a great equaliser.

"Dementia has no boundaries, you may get it whether you are a graduate or have primary school education. Whether you are rich or poor, smart or stupid, anyone can get it," said Steven.

Through this, he tried to assert the control he has lost, by speaking up about his new affliction instead of cowering to its unpredictability.

A version of this article appeared in the print edition of The Sunday Times on May 24, 2020, with the headline ''Love has no boundaries''. Subscribe