Living with dementia

The toll it takes on family and friendships

The thought of divorce crossed Lai Quen's mind as she coped with the stress of living with a man much changed by dementia

Steven's eldest daughter, Desiree, having dinner with her parents on Feb 7 while her daughters played in the background at Steven's home. Desiree tries to have dinner with her parents as often as she can. (From left) Ms Wong Lai Quen and her husband
(From left) Ms Wong Lai Quen and her husband Steven Lau with his long-time friends from his university accountancy class Chua Thiam Chok, 63, director of a used car and printing company; Chue Chee Cheong, 63, a former stockbroker; and Freddy Chua, 64, managing director of a fund management firm, at Orchard Rendezvous Hotel on Jan 4.ST PHOTO: NG SOR LUAN
Steven and Lai Quen with their daughter Jessica, 28, and her groom Brandon, 29, at the young couple's wedding in Sentosa on Nov 9 last year. The older couple have three daughters.
Steven’s eldest daughter, Desiree, having dinner with her parents on Feb 7 while her daughters played in the background at Steven’s home. Desiree tries to have dinner with her parents as often as she can. ST PHOTO: NG SOR LUAN
Steven's eldest daughter, Desiree, having dinner with her parents on Feb 7 while her daughters played in the background at Steven's home. Desiree tries to have dinner with her parents as often as she can. (From left) Ms Wong Lai Quen and her husband
Steven and Lai Quen with their daughter Jessica, 28, and her groom Brandon, 29, at the young couple’s wedding in Sentosa on Nov 9 last year. The older couple have three daughters. ST PHOTO: NG SOR LUAN

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

A few old boys from Steven Lau's university accountancy class gathered for a New Year's lunch at Orchard Rendezvous Hotel on Jan 4.

As soon as Steven, 63, entered the private room at the TungLok restaurant, his 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 felt 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 always has been.

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

Chua Thiam Chok, Steven's best friend, noticed that Steven had become more reserved and could no longer hold long conversations.

The old boys usually talk about former classmates and the state of the market.

They do not talk much about dementia as Thiam Chok, 63, director of a used car and printing firm, is afraid it may hurt Steven's pride.

Friends may not realise it is the silence surrounding the topic that alienates dementia sufferers from their community.

 
 

Dr Edward Shaw, a physician who co-wrote the book Keeping Love Alive As Memories Fade, wrote about how he often heard 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 they seem not to remember him. He lamented: "When you are down and out, no one recognises you."

TWO 'D' WORDS: DEMENTIA, DIVORCE

Growing up, Steven's eldest daughter Desiree, 36, always turned to dad for advice when making big decisions.

He helped her pick her university, and when she started dating the man who would become her husband, she felt confident about bringing him home because she knew her dad would like him.

 
 

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

They saw their mother giving in to him as weakness. Sometimes, Steven would accuse Lai Quen, 62, 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 middleman or peacemaker between her daughters and husband.

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 their 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, a speech therapist.

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

Author and dementia advocate Kate Swaffer said: "Dementia becomes like another person in the relationship and the person without dementia has to learn not to 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 in 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: "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.

Not knowing how much longer she will have with her father, she makes it a point to return 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."

LEARNING WHAT IT MEANS TO LOVE

Marriage is just the beginning of learning what it means to love someone, Lai Quen said to her daughter Jessica on her wedding day.

She and Steven had 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's 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 once crossed her mind.

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

Two days after the wedding, Steven asked Brandon 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 the 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 surfaced.

Lai Quen 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.

• For the full feature on Steven Lau's advocacy journey even as he battles dementia, go to str.sg/fight-dementia

A version of this article appeared in the print edition of The Sunday Times on May 24, 2020, with the headline 'The toll it takes on family and friendships'. Subscribe