A man, his wife and dementia in between

A series of losses: of mind, of memory, of identity, perhaps eventually of life - that is the familiar trajectory of dementia. But Steven Lau does not want to go gentle into that good night, and his family and the community walk with him in his quest to find a new voice.

They have been happily married for 37 years. In the last five years, however, a “third party” has intruded. The uninvited hanger-on is at best an inconvenience and at worst, a monster.

Yet he sticks closer than a lover to Steven Lau, who had no choice but to take him along to a wedding banquet for his youngest daughter, Jessica, at an upscale hotel on Sentosa.

On that hot November day, Steven, 63, rose to his feet to give a speech to the 250 guests present. He reached into his shirt pocket for a piece of paper, which he unfolded. His second daughter, Valerie, 33, stood next to him.


Father of the bride, Steven Lau, charms the wedding guests with his carefully prepared speech.


Moments later, the typed words on the page escape him. His daughter Valerie steps in to help.

For two hours the day before, she had helped him craft the speech. Sometimes, he nitpicked her word choice, but could not suggest alternatives. Certain words have become irretrievable from a mind that sometimes feels like chicken floss.

Sentences have a habit now of coiling inside his mind and refusing to come out. Or his mind may wander, his words following as it meanders.

“I just want to let you all know that I am Jessica’s dad - just a friendly reminder,” said Steven, to laughter and loud cheering from the audience last November. Some of them were aware that he has dementia.

Perhaps it was also a reminder to himself, anchoring him to the occasion and his place in it.

Then he began reading out his short, prepared speech, brushing Valerie’s hand away lightly, a little annoyed, when she pointed to where he had stopped.

This is simple, he thought. I can read my own speech.

“People can change over time and marriage is not like courtship. Marriage requires a lot of lasting commitment and love from both parties,” Steven addressed his youngest child.

Sitting on the stage beside her husband, Jessica, 28, listened, a lump forming in her throat.

She understood the truth and the weight of what he had just said because she had seen for herself the toll that dementia had exacted on her parents’ marriage and her mother’s struggle in wrestling the monster.

His memory is not the only thing that is being stolen from him. Where he once insisted on punctuality from his daughters, keeping time is now beyond him.

That morning, he woke up half an hour late, which meant the traditional ceremony of veiling the bride had to be delayed.

That hiccup aside, he was the consummate host that day - mingling with the guests with ease and flair.

Valerie recalled her own wedding in France two years ago in 2018 when she walked down the stairs of the chateau. Her father was at the bottom waiting for her, and the expression on his face was one she would never forget.

Jessica, too, resolved to be married as soon as she could, so that her father would be at her wedding as they remembered him.

It was a memory she wanted for herself, even if the tide was going out on his.

 

A former top stockbroker, Steven was forced to face the reality that something was terribly wrong when he began missing critical moments to buy or sell stocks for his clients.

Steven’s father died when the boy was six years old. His mother raised him on her $600 salary as a clinic assistant and part-time midwife. She is 88 now and has also been battling dementia for the last two years.

An only child, Steven learnt how to fight to avoid being bullied. He was also good at school, graduating among the top students in his accountancy class at university.

He had a short stint as an auditor, which he did not enjoy, and in the late 1980s joined Sembawang Maritime as its chief accountant. In time, he moved on to business development in mergers and acquisitions.

An old photo of Steven (2nd from right, with leg outstretched) when he was in the army. He appears to appreciate his time in the army, often peppering his talks with his army experience.
An old photo of Steven (second from right, with leg outstretched) when he was in the army. He remembers fondly his time there, often peppering his conversations with memories of those days. PHOTO: COURTESY OF STEVEN LAU 

Eventually, he became a stockbroker, staying in that line for two decades, at first with securities firm Lum Chang Securities and then DBS Vickers.

“For stockbroking, you don’t really need the know-how. You just need to ‘know who’,” Steven quipped.

He worked hard, had a network of friends who were bankers and trusted him with their trades, and he worked almost round the clock daily. He would work till 11pm and then wake up at 4am or 5am the next morning to track the US market.

At the peak of his career from 2005 to 2010, he could earn up to $200,000 a month.

A family photo on the wall at Steven’s home. The family decided to take photographs together when Steven was diagnosed.
A family photo on the wall at Steven’s home. The family decided to take more photographs together after Steven was diagnosed with dementia.

His wife, Wong Lai Quen, also did well in her career, having worked for a multinational IT company as a partner for 37 years before she received a golden handshake at the retirement age of 60 in 2018. She travelled frequently for work and lived in countries such as China and Indonesia, spending years at a time apart from the children.

One of the first few instances she noticed something amiss with Steven was when he visited her in China in 2013. She asked him to go to the post office to pay some bills but he forgot to do so.

His daughters recalled other warning signs - dad ringing them wanting to know his own postal code, or asking the same questions at dinner over and over.

But the most worrying was when Lai Quen noticed he was failing to follow through with certain “buy” or “sell” stock market transactions for clients. When the lapses were discovered, Steven had to reimburse the losses out of his own pocket.

Lai Quen knew the danger of making such mistakes in a high-pressure, time-sensitive industry and urged Steven to retire.

Steven was reluctant. He was a top performer who had won awards. Work gave him a deep sense of identity and fulfilment, and his relationship with clients went back so far that they were inclined to forgive his slip-ups.

But when he saw how much money he had been coughing up - his blunder in one transaction cost him $50,000 - he knew he had to call it a day.

He retired from the trading firm in 2012. Then, the couple had not yet suspected that it might be dementia. 

Said Steven: “I didn’t feel good about leaving. But I couldn’t be in denial and have to find out what is wrong with me.”

 

Steven was just 58 years old when he was diagnosed with dementia. His full head of black hair makes it much harder for people to be empathetic to his erratic or unusual behaviour.

Lai Quen was based in China from 2009 till 2013 and Steven flew to join her there after he retired.

When the couple moved back to Singapore in 2014, they immediately arranged to see a neurologist after noticing more memory lapses and behavioural changes. 

The specialist at Mount Elizabeth Medical Centre administered the Mini Mental State Examination, a standard cognitive test.

There were questions that tested his memory, mathematics and motor coordination skills.

For instance, he was asked to count backwards from 100 at intervals of seven, as well as fold a piece of paper into half and put it on the floor beside him.

When the diagnosis of mild dementia came, Steven was so taken aback that he could only nod.

Though not surprised, Lai Quen began asking questions: Why did this happen to her husband when he was only 58?

Did the fact that both his mother and maternal grandmother also suffered from dementia have anything to do with it?

In Singapore, one in 10 people aged above 60 lives with dementia, and half of those above 85 have the condition. It is estimated that by 2030, there will be more than 100,000 people with dementia, up from 82,000 in 2018.

Dementia is a term that describes a number of different conditions affecting the brain, all of which can rob patients of their memory and daily functions, such as thought processing, concentration and judgment.

It is a degenerative and incurable disease, and people live with it about eight to 10 years on average, though some last for 20 years.

There is little treatment for dementia, but Steven receives a patch that is put on his back daily. It contains medication that aims to restore the balance of neurotransmitters in his brain, to improve his memory, awareness, and his ability to perform daily functions.

Steven seems to accept his condition, but there are signs that he may not be fully comfortable with being identified with it.

His daughters, for example, do not tell others that he has dementia in his presence, especially as an explanation for odd or antisocial behaviour, as he can be sensitive about it.

His conversations about his condition will quickly turn to refer to friends who are in a more advanced stage of the disease.

Struggling to find information after Steven was diagnosed, Lai Quen began reading widely.

To keep Steven mentally and physically active, they attend the Alzheimer’s Disease Association (ADA) Memories Cafe programme every Saturday, where participants with dementia interact with others through activities. Some weeks they sing, others they could be playing mahjong or musical instruments.


Lai Quen and Steven sharing a joke during a drumming session at *Scape in Orchard Road on World's Alzheimer's Day on Sept 21, 2019.

Steven also has twice yearly check-ups at the National Neuroscience Institute (NNI). As of February this year, his stage of dementia was still classified as mild, according to his doctor at the institute. Specifically, he has vascular dementia, a type of dementia caused by reduced blood flow to the brain, and Alzheimer’s disease, another type of dementia, which is a progressive disease of the brain that slowly causes impairment in memory and cognitive function. 

What had been hard for Lai Quen was finding herself being alienated instead of supported when she told other people about Steven’s condition.

“When I tell them that my husband has dementia, they will say ‘Aiyah, my mother or grandmother also have’,” she said.

An estimated 4,000 people in Singapore have young-onset dementia, which is when the condition affects someone aged 65 and below. Many are still working and have young families when the disease sets in, the NNI found in 2016.

Having dementia - at any age - may affect thinking, behaviour and the ability to perform everyday tasks, with the gradual deterioration of cognitive functioning such as thought processing, concentration, memory and judgment.

For Lai Quen, it was that sense of estrangement that propelled her to be open with others about her husband’s condition through advocacy.

“It is only by sharing about it more with others that people can help me.”

An old photo of Steven (2nd from right, with leg outstretched) when he was in the army. He appears to appreciate his time in the army, often peppering his talks with his army experience.
Steven and Lai Quen share a laugh at Mao Kong in Taipei, Taiwan, when they travelled there with other members of ADA’s Voices for Hope program for a study trip on dementia in Nov-Dec, 2019.

How an otherwise ordinary couple met and fell in love - yet it was their extraordinary love for each other that sustained them through the difficult years later on.  

She was that quiet first-year student, having a late lunch in the cafeteria of the Dunearn Road hostel for undergraduates at the National University of Singapore. A chemistry major, Lai Quen’s laboratory lessons often ended late and 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 to each other about anything. 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 short temper.


Steven and Lai Quen at their hostel during their university years.


The couple in their courtship days.

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

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

Over the years, the location of the supposed abandonment has become farther and farther.

Kuantan became Thailand. Thailand is now Vietnam.

At first, Lai Quen rushed to reassure him 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 bantered.

But the jokes gradually became darker.

Why Vietnam?

Because there are many landmines 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 feeling 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 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.

Madam Lynda Teo, 62, whose husband also has dementia, told her that she, too, was often scolded and accused of having an affair. When Madam Teo raised the issue with the doctor, he said her husband was afraid that 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 the spouse’s faithfulness.

For the spouse, even knowing why such suspicions arise may not alleviate the emotional trauma on the marriage.

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

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

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

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

“At first, I was very hurt and confused. How can I do this to my sister? But later, I realised that his feelings of insecurities are surfacing,” said Lai Quen.

Her sister graciously understood the situation and packed up 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 also a multifaceted attack on a person’s identity.

Many people 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 looks for Lai Quen when the duo left each other’s side while on a tour of the Rou He night market in Taipei, Taiwan.
Steven looking for Lai Quen when the duo left each other’s side while on a tour of the Rou He night market in Taipei on Nov 30, 2019.

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

Knowing all this, Lai Quen 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. Having taken another job in her retirement, she makes sure to leave the office by 7pm so that they can have dinner together.

 

That old familiar hobby of travelling the world takes on a different sheen with the added companion of a debilitating disease, though travel continues to open up new horizons and perspectives.

Travelling and driving are two of Steven’s favourite leisure activities. The first time he lost his way around was on a road trip with Lai Quen in New Zealand in 2018. It was a driving trip organised by the Automobile Association of Singapore and the group had stopped at a church in South Island.

Steven busied himself with taking pictures of the surroundings, while Lai Quen reminded him to stay put and popped into the church for a quick prayer.

When she came out, there was no sign of him. Someone said he had seen Steven at a nearby Starbucks cafe. She dashed over and found him.

Upon seeing her, he said with a furrowed brow: “Next time, I don’t want to go on holiday any more.”

Dementia has left him a shell of his former self. When the children were growing up, Steven would plan holidays for the family and drive them around overseas, whether it was New Zealand, the United States or Canada.

But now, taking him abroad is stressful.

Steven used to enjoy planning overseas travel and is seen here with his family on one of their many trips. He no longer is able to enjoy travelling as he once did.
Steven used to enjoy planning overseas travel and is seen here with his family on one of their many trips. He is no longer able to enjoy travelling as he once did.

On arriving in France in 2018 for Valerie’s wedding, Steven wanted to help with their suitcases as they made their way to a restaurant for lunch.

Lai Quen was reluctant, fearing he would misplace a bag, but gave him one to take care of anyway.

Sure enough, her fears were realised when they got to the restaurant and found the bag missing. He had forgotten about it and left it behind on the pavement when they were waiting to cross the road. 

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

Despite the impairment to his judgment now, Steven refuses to give up driving as he has done so for the last four decades. Lai Quen also believes that 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.

In November last year, Steven and Lai Quen, together with five other people with dementia and their caregivers, took a week-long study trip to Taiwan. 

Organised by the ADA and the Lien Foundation, the trip showed them how the Taiwanese juggle between supporting their loved ones with dementia and yet respecting their voice and agency by empowering them to do dementia advocacy work.

Some of the dementia self-advocates there formed an advisory group last year to advise the government or other sectors on dementia-related services and policies.  

For instance, Ms Tang Liyu, secretary-general of the Taiwan Alzheimer’s Disease Association, said some people with dementia did not dare to borrow library books because they were afraid of incurring fines if they were to forget to return them by the due date. 

So the libraries in Taiwan made it their policy to make calls to remind those with dementia to return their books when they are due or waive any overdue charges. 

There, Steven and Lai Quen also learnt that three-quarters of the dementia sufferers in Taiwan only have a mild stage of the disease. Four in every 10 people who have 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.”


Finding a new voice: Dementia self-advocacy - an oxymoron? 

It seemed like a joke - get people who have dementia to be advocates 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, who started the Voices for Hope programme at ADA in 2019, 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 that is empowering, both for themselves and for others to model after,” said Ms Wong.  

Advocacy is about owning one’s life, or helping someone else reclaim his. The Voices for Hope programme aims to train people with dementia, and their caregivers, to speak up and share their dementia journey with others.

Sharing personal 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, Lai Quen quashes her reflex to help him.

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

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 how both were articulate and amiable, she 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 also 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. 

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 has stripped away all his identities 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 has tried to regain the control he has lost by speaking up about his new affliction, instead of cowering to its unpredictability.

Steven and his wife are to give a talk to university students. But first, he needs to remember enough to get them there.

On a weekday last year, the couple made their way to the front of a room filled with students. Getting from their home in Bedok to King Edward VII hall at the National University of Singapore (NUS) had its travails.

If the scourge of dementia had not struck, it would have been unlikely for them to return to their alma mater some 40 years later to give a talk.

The public talk last November was their second, the first being an interview on radio earlier in the year. That went well, even though Steven could not remember who he was speaking to halfway through.

This time, Steven stood up, clasping a piece of paper that had all the talking points listed for him.

The students, who had been planning to put on a play centred on dementia, were keen to learn more about the disease.

Steven began: “I am an honours student who did accountancy, so being smart doesn’t mean you cannot kena (get afflicted).”

Later, as his introduction meandered, Lai Quen gently guided him back to the topic at hand by pointing to his sheet of paper.

Perhaps embarrassed that he needed her help, Steven responded in the only way he knew how.

“Oh, my wife wants me to tell you that I used to work as an accountant and then I transferred to mergers and acquisitions.”

He added: “Well, my wife wants me to tell you that having dementia doesn’t mean the end of the world but what it takes is the children, the loved ones, to accept it.”

What was meant jokingly bore the bitter irony that he was no longer his own spokesman.


Steven clutching his notes before his speech to the NUS students on Nov 13, 2019.

Lai Quen, too, had lost her composure moments earlier.

“My name is Lai Quen, and this is my husband Steven, who has dementia,” she said, dabbing the corners of her eyes with tissue as the tears came.

Later, she said it was because she never imagined she would have to introduce her husband that way.

Still, she was determined to share with the students the full, unvarnished “truth” of what it means to live with dementia.

She talked about how Steven demanded that her sister move out.

“That was very hard for me. I felt very sad because I was caught between my husband and my sister, but she was very understanding and bore no grudges,” said Lai Quen.

She was also frank about the violence that can come with dementia. While on a holiday to France in 2018 before attending Valerie’s wedding, Steven punched her brother-in-law during a heated conversation. The damage was minimal but the witnesses were horrified.  

Lai Quen knew she could be honest because Steven would quickly forget what she had just said.

It was not easy to have to share such personal details, said Lai Quen.


Steven cracking jokes and laughing along with the NUS students during the talk on Nov 13, 2019.

At another sharing session, a caregiver talked about how her husband had been unable to find the toilet in their hotel room, and presented her with his underwear neatly folded up the next morning, but full of faeces.

“It is important to give real examples so that people know that dementia goes beyond forgetfulness, but at times, our loved ones may be aware and sensitive to it,” said Lai Quen.

There have been times in the night when Steven rolled over to her in bed and said he wanted to die.

He never elaborated. Words could not express his sense of alienation and sadness.

People with dementia watch a play on dementia. Do they recall enough to recognise facets of themselves being shown on stage?

Steven and Lai Quen sat in the darkened theatre of the University Cultural Centre at NUS, alongside 12 other clients and caregivers from the ADA, one evening in January. They had been invited by King Edward VII hall to watch a play, Don’t Forget To Remember Me, written by local playwright Haresh Sharma.

The 45-minute play traced the internal transformation of caregiver Janice, whose mother has dementia, as she moved from confusion, frustration and denial towards acceptance of her mother’s condition.

Play director Jed Yap, 23, was more than a little anxious that night, knowing that the play would be seen by people who are living with dementia.

“Portraying dementia is risky and I don’t want to make a mockery out of it,” he said, hours before the play was staged.

 

Steven, Lai Quen and other members of the dementia advocacy group at the NUS play on Jan 18, 2020.

One scene showed Janice breaking down in front of the daycare centre manager and articulating her wish for her mother to die so that she could move on with her life.

Emotion rose up in Lai Quen. She, too, remembered how she had initially wanted Steven to die as she could not cope with the pain and stress.

When agitated, he would rain down vulgarities and bang the table or door.

It is difficult to love someone when one is always being scolded or perpetually on call, she said quietly. 

She recalled one New Year’s Eve when Steven told her that she was free to go and watch fireworks with the children, while he stayed at home.

Yet when she was out at the Marina Bay area, she received one text message after another from him, all of them accusatory. The messages said she could go where she liked, that they could go separate ways and divide the property accordingly.

By the time she got home, he was banging doors.

From that day, she became cognisant of another form of loss - her freedom.

“At least he can still shout and bang the table and express himself. One day, maybe he won’t even be able to do that; one day, perhaps, I will no longer hear his voice,” said Lai Quen after the play, as tears welled up, trying to squeeze out every ounce of gratitude within herself so as to change her perspective about the situation.

Steven seemed to be aware of what was happening on stage. When Janice’s mother started repeating her sentences in the play, he blurted out immediately: “Dementia, dementia!”

The play had moved him to acknowledge a secret compartment of sadness within him.

“I know what the play is talking about because I experience it. But I can’t transfer this sadness to others.”

What’s it like to live in my shoes? Steven shares his experiences of having dementia with experts who treat the condition.

The clock was ticking. In one and a half hours, Steven and Lai Quen were due to give a presentation to a group of 10 doctors and nurses at Khoo Teck Puat Hospital. The couple had volunteered to share their experiences of navigating the healthcare system from the perspective of a patient with dementia.

But back at home, Steven refused to get ready to go.

“If you don’t come, it’s okay,” Lai Quen told him, before proceeding to the bedroom to get changed.

In the past, she would get anxious and stressed whenever Steven was uncooperative before an occasion.

But she has learnt that it is pointless to force the issue and risk him getting even more agitated. Instead, she pretends to accede to his wishes.

It usually works. Five minutes later, he forgot he had not wanted to go, changed his clothes and went with his wife.

“I have learnt not to be discouraged by difficult behaviour and find new strategies to manage it,” Lai Quen shared with the healthcare professionals.

Lai Quen made a suggestion that people with dementia be given a tag to wear when they go to the hospital for appointments, so that staff can look out for them.

Dementia is an invisible disability, she said, so they may be overlooked and become disorientated in the confusing web of healthcare services.

But having a label is too stigmatising, Steven interjected.

Listening intently, Associate Professor Philip Yap, director of the Geriatric Centre, said hospitals could consider flagging the system when a patient with dementia arrives, so staff know to pay special attention.

Lai Quen also suggested that doctors spend a few minutes talking to the caregivers separately during medical consultations. This is because patients may not accurately represent things to the doctors during such consultations, yet it is not nice for the caregivers to talk over the patients or correct them and risk embarrassing their loved ones.


Against the dying of the light: People cope with the losses and new normal of living with dementia differently. For Steven, he chooses to joke his way out of the dark tunnel.

Patting his more than ample stomach, Steven announced that he was on a “seafood” diet, one where he was only allowed to “see food”.

It turned out that he had been gaining weight as he would go to the market and have char siew rice every day for lunch, having forgotten that he had had his favourite meal just the day before.

Author and dementia advocate Kate Swaffer, who herself has young-onset dementia, said: “It is clear that Steven uses humour to survive some of the challenges of dementia.”

Ms Swaffer, a board member of Alzheimer’s Disease International, is the consultant for ADA’s Voices for Hope programme.  

Despite having trouble with his recall, Steven’s ability to banter or engage in witty repartee still remains.  

Ask him serious questions of whether he worries about not being able to recognise his wife one day or ending up in a nursing home and he answers jokingly yet meaningfully: “By then, I would not know what is happening, so why worry?”

Ms Swaffer said Steven is using humour less to hide his pain than as an indication that he is becoming more comfortable with himself.

“I have used humour as a coping strategy too. In the past, he talked less seriously about his dementia and made lots more jokes but now, he is much more comfortable talking about the reality of dementia, as well as being positive about this whole thing,” she said.

While Steven uses humour as a lifebuoy, Lai Quen copes by throwing herself into work.

She came out of retirement to join information and communications technology company NCS in 2018, maintaining the IT systems of government agencies.

“When I get busy, it is good. Working is the biggest way in which I de-stress. It keeps my brain occupied and keeps me sane,” said Lai Quen.

Self-care is important if one is to be able to care for a person with dementia, she said.

Their domestic helper prepares healthy salads for lunch so Steven does not venture out to get his char siew rice fix. 

When he does go out, he is such a familiar face in the Bedok South area, where he has lived for 23 years, that people in the neighbourhood know what he needs.

The uncle at the coffee shop makes him teh tarik with less sugar as he knows his customer has diabetes. Others, such as the hairdresser, butcher and fruit stall owner, help keep an eye out for him as they know about his condition. 

Without any top-down directives, the area has become a dementia-friendly community; a more caring and inclusive society for people with dementia and their caregivers.

Said Lai Quen: “They look out for him and tell me where they last saw him.”

How does a class reunion, typically full of reminiscence, pan out when one of its members has dementia?

A few of the old boys from Steven’s university accountancy class gathered for a New Year’s lunch at Orchard Rendezous hotel on Jan 4. As soon as Steven entered the private room reserved for them at TungLok restaurant, former classmate Freddy Chua, 64, teased him: “Who am I? What is my name?”

It was not because they had not seen each other for a long time.

“I feel we need to talk about his dementia head on and to do it openly. There is nothing to feel shameful or guilty about,” said Freddy, the managing director of a fund management firm. 

Outwardly, Steven appeared as jovial, loud and witty as he had always been.

Lai Quen tried to explain that he is a different person these days, especially when he gets agitated or feels insecure.

 

(From left) Lai Quen, Steven and former classmates Chua Thiam Chok, Chue Chee Cheong and Freddy Chua at a restaurant at Orchard Rendezvous Hotel on Jan 4, 2020. Lai Quen makes a special effort to discuss Steven’s dementia, and dementia in general, with his long-time friends.

Another classmate Chue Chee Cheong, 63, interrupted the conversation to pour them more wine.

“Eh, Chua, last time we used to hang out and drink quite a bit, remember?” Steven said to his best friend, Chua Thiam Chok, seated next to him.

Meanwhile, Chee Cheong, a former stockbroker, smiled and sat down. He noticed that Steven’s memory was getting hazy as Steven had never been a drinker. The most he would have was just one or two beers with his best friend, who also slept in the same bunk as Steven when they were both officers in the armoured regiment.

Once every two weeks for years, this gang of brothers would meet for mahjong sessions at one of their houses. The men stopped meeting as frequently when they got married and started having children, but Thiam Chok continues to meet Steven for coffee at a market in Bedok.

When Steven and Lai Quen went on air to give a radio interview on living with dementia last year, Thiam Chok tuned in and was so touched by it that he donated money to the ADA. He also bought a table at ADA’s charity fund-raising dinner and invited their university friends along.

Thiam Chok, a director of HoBee Print, noticed that Steven has become more reserved and can no longer hold longer conversations. They usually talk about former classmates and the state of the market. Despite being Steven’s best friend, they do not talk much about dementia as he is scared it may hurt Steven’s pride.

Friends may not realise that it is the silence surrounding the topic that alienates dementia sufferers from their loved ones or friends.

Dr Edward Shaw, a physician who co-wrote the book Keeping Love Alive As Memories Fade, said he often hears his patients say that they learn who their true friends are after being diagnosed with dementia.

Either because they do not know what to say or how to cope with difficult behaviour, some family members and friends have distanced themselves from Steven.

He still remembers them, but the irony is that they seem not to remember him.

He lamented: “When you are down and out, no one recognises you.”

The two ‘D’ words that may come hand in hand - dementia and divorce.

Growing up, Steven’s eldest daughter Desiree, 36, always turned to dad for advice when making big decisions. He helped her to pick her university and when she started dating the man who would later become her husband, she felt confident about bringing him home because she knew her father would like him.

So when Steven started throwing irrational temper tantrums a few years before he was diagnosed with dementia, Desiree and her sisters thought he was too used to getting his way.

They saw their mother giving in to him as weakness.

Sometimes, Steven would even accuse Lai Quen of loving the grandchildren more than him, and she would rush to reassure him.

So it came as a shock when Desiree heard her mother mention the “D” word one day - not dementia, but divorce. It was then that she began to understand the pain and stress her mother was going through, as she often had to be the buffer or middleman between her daughters and her husband.

 

A text exchange between Lai Quen and Steven.

While not all caregivers may admit to it, doctors say the emotional toll of caring for a spouse with dementia may be so great that caregivers may think longingly of divorce.

It was also then that the daughters realised it was not weakness that made mum give in to dad, who was sick through no fault of his own.

“Dementia is like having cancer and when a patient has cancer, we don’t hate or blame the person but the disease. So now, we have a name to call it and it is so much easier to blame that instead of blaming him,” said Desiree, who works as a speech therapist.

Each time she is upset by his bad behaviour, she reminds herself that he is no longer fully in control.

Ms Swaffer, the consultant for ADA, said: “Dementia becomes like another person in the relationship and the person without dementia has got to learn how to not blame the person with dementia when certain things happen.”

Desiree is also aware that dementia’s invisibility makes it hard for others to have the same level of understanding and compassion.

“It is so much easier for people to give way to or be kinder to someone on a wheelchair than to a seemingly able-bodied man doing strange things. We can’t plaster the word ‘dementia’ on his face and so when he acts up, it can get tricky if strangers are involved,” she said.

When Steven was first diagnosed with dementia, Desiree used to deliberately provoke him to recall things, trying to jolt his memory.

After he watched a movie, she would ask him what it was about.

He would fudge it by giving a general or vague answer, such as “oh, it was quite funny”.

These days, she has stopped asking him such questions, as making him admit he cannot remember simply makes him feel more helpless about his condition.

Not knowing how much longer she will have her father around, she makes it a point to come home for dinner on Fridays and to meet for a family meal on weekends.

With teary eyes, she said: “I want to ensure that we come back as many times as we can. That is how I cope with it.”

Marriage is just the beginning of learning what it means to love someone, Lai Quen said to her daughter on her wedding day. As her daughter begins the first act, she and Steven have just started on their second act, showing the way ahead with wisdom, grace and hope.

Lai Quen, dressed in an intricate grey lace gown, rose to her feet and asked for the microphone after Steven gave his short address to the young couple. She, too, had some advice for her newly wedded daughter and son-in-law.

“There is something that I have lived through and would like Jessica and Brandon to remember... that life changes, things change, but the faith for one another must always continue to remain everlasting and forever,” said Lai Quen, her voice cracking.

“Your spouse or partner may change for whatever reason because of health. I really want you to remember that you have to be with your partner till the very end.”

She did not refer to dementia, but everyone in the family knew she was alluding to it.

They also knew that she would not walk away from her marriage or family, much as the thought of divorce had crossed her mind.

 

Lai Quen trying to remove grains of rice that were sprinkled onto Steven’s hair during their daughter’s traditional wedding ceremony on Nov 9, 2019.

Hearing her mother speak, Jessica resolved to be as brave and faithful.

Two days after the wedding, Steven asked his son-in-law when he and Jessica would be getting married.

One week later, Steven would point to an advertisement in the papers and tell Lai Quen to buy an item for Jessica’s wedding.

Lai Quen hoped her daughter understood what she was trying to say - the wedding was over, but life has just begun.

Theirs was the first act, while she and Steven had just started on their second act.

The road ahead for the older couple seemed uncertain, even arduous. Can Steven be both incurably ill and happy? How can Lai Quen find joy living with a husband who perpetually acts up?

But the die was cast nearly five years ago when the symptoms started surfacing. She intertwined her fingers with Steven’s as both of them, along with their guests, raised their glasses to toast the wedding couple.

Steven shouted “Yam Seng!” raucously and gleefully into the cool air, as if he had no cares in the world.