SINGAPORE: It was 6.30am and Geraldine Lim was about to give up. Her father had not come home since he left for his usual walkabout the afternoon before.
There was no dial tone when she called his phone, and she had no way of giving him directions to get home, unlike previous occasions when he’d wandered out on this own.
By 7am, she was ready to go to the police. But just then, 83-year-old William Lim appeared at the gate, back hunched with pain, eyes sunken from roughing out the night. And this is all Geraldine will ever know, for her father can’t remember: He has dementia.
“He told me some kind stranger sent him back, but where he was the whole night, what had happened to him, he has no clue,” Geraldine, 50, said.
The morning after he went missing for a whole night, he reappeared exhausted and back hunched in pain.
Calm and composed by nature, the mother-of-three had always been able to manage the quirks that came with William’s illness: From the time he drank soy sauce instead of water, to when he lost his car.
This time however, she felt, “for the first time, like maybe I can’t cope with this properly”, admitted Geraldine, her voice cracking as she recalled the incident a year ago.
It was then that she knew help was needed.
READ: Guilt, burnout and sacrifice: Dementia patients’ caregivers ask ‘have I done enough?’
WHO IS/WAS WILLIAM?
To Geraldine, William had been a typical “Asian father” who was a school discipline master: No hugs and kisses, except maybe on her birthday. But he also had a funny, life-of-the-party side.
William Lim with his wife May and their grandchildren.
In his later years, the lapses in his memory got more and more noticeable.
First, he bought the wrong groceries and insisted he was right. Then, he forgot about the food stalls near his home of 30 years and couldn’t buy lunch.
And when he could no longer remember the steps during his line-dancing sessions – an activity he enjoyed with his wife – it became clear that this was not just an “old-age kind of forgetfulness”, Geraldine said.
Yet, he insisted he was fine. Eventually, only one thing moved him to get checked – his wife, who had just been diagnosed with stage 4 cancer, told him: “Think of all the people who are going to have to take care of you.”
In 2013, he was diagnosed with dementia.
LIVING WITH DEMENTIA
Seven years later, the William of today is a man who, in a short film made by Geraldine’s eldest daughter Bethany Tan, stares at a beautifully-framed photo of a woman he spent 47 years with – and takes nearly six seconds to identify her as “my… wife”.
William’s wife passed on in 2014, a year after his dementia diagnosis.
After May died in 2014, William was still capable of living on his own. He was listening to his doctor and taking his medication, and he continued to drive himself to meet friends.
Even when he eventually moved in with Geraldine’s family in 2016, he went on his own way without a problem.
Until one day, Geraldine got a call from William: Someone had stolen his car, he said. “To give him the benefit of the doubt, we made a police report and he recalled where he thought he’d parked the car,” Geraldine said.
Two days later, William finally found it – in a different spot.
He had to stop driving then. But, having developed a tendency to wander – one of the behavioural changes that can occur as dementia progresses – he took to exploring the island by public transport.
But then came the getting lost.
The first time it happened, William thought he had taken a bus to North Bridge Road but he was, in fact, on a train and wound up at North Buona Vista. Over the phone, Geraldine instructed him to ask for help, and a stranger eventually put him in a cab back to their home in the east.
Sounds simple? It wasn’t. “He was stubborn,” recalled Bethany, 22. “He didn’t want to trouble anyone and we really had to desperately convince him.”
Bethany. a freelance videographer, made a short film about her grandpa’s dementia. (Photo Bethany Tan)
This situation repeated itself many times. While Geraldine was worried for his safety, she still wanted to accord him his dignity and independence of movement.
So, they’d hook a tracker and his keys on his belt loop every morning, and off William went. The only rule? He had to tell somebody before he left.
But of course, he didn’t.
CLIMBING THE WALLS
To stop him from slipping out without notification, the family padlocked the front gate.
One morning, noting that the padlock was in place, Geraldine assumed William was home – until she noticed his shoes were gone and he was not in his room.
CCTV footage showed that the resourceful 83-year-old had very slowly clambered over the garden wall. When he returned an hour later, he was unfazed by the scare he’d given them.
“I suppose I did climb the wall,” he shrugged. Subsequent wall-scaling attempts followed; kind (and confused) strangers even stopped to help him down.
The family’s CCTV footage showed grandpa slowly climbing over the garden wall on one of his escapades.
Though this had her climbing the walls sometimes, in a manner of speaking, Geraldine had come to terms with her father’s irreversible “second childhood”. “You can either cry or laugh about it, or get angry,” she said.
My choice is more to laugh with him; there’s no point getting mad at him anyway.
As the disease progressed, William, now 84, forgot to take his meals and medication. He would raid the fridge and eat or drink anything – a whole lemon, chicken stock, even soy sauce. He would stick the shaver in his mouth instead of gliding it across his chin. Geraldine was constantly on edge.
While at work as a manager with the Office for Catechesis, “I had to remember to check the time and call him quite frequently,” she said. “You can’t focus on your work sometimes.”
In late 2018, after he didn’t come home for a whole night, Geraldine finally sought help – she got a doctor’s referral for William to attend dementia day care.
WATCH: What happens when grandpa goes wandering (8:!5)
WHAT HELP LOOKS LIKE
On his first day at St Luke’s ElderCare Marine Parade Centre, true to form, William embarked on a little escapade.
Centre manager Jeffrey Ha, 50, said his “heart dropped” the moment his new client ran out the door. “He didn’t just walk, he sprinted!”
William had even rallied fellow newcomers to join him, Geraldine recalled, laughing. “It was actually very funny. He said, ‘no why should we stay here?’ And they all tried to leave the centre together!”
But the experienced Jeffrey coaxed William to go back inside, by simply telling him that Geraldine was on the phone asking for him. Jeffrey had noticed William’s attachment to his daughter when they first met.
It’s this kind of sensitivity in handling the behaviour of those with dementia that allows caregivers like Geraldine peace of mind when leaving them in the hands of the day care staff.
Centre supervisor Jacob Chong, 29, knows from experience with his own grandfather what living with dementia is like.
Across Singapore, there are about 100 centres like this one that offer dementia day care services for seniors like William, with subsidies for Singaporeans. Overseen by the Agency for Integrated Care, the centres also provide relief and training support for caregivers.
Geraldine soon realised how much she needed this kind of respite. “My reaction at first was that finally, it’s someone else’s responsibility as well,” she said.
William started by attending day care once a week; then it became his routine every weekday.
At 8.30am, a cab arranged by the centre would pick him up. By 9am, he’d be settled comfortably at the dining area with a bowl of porridge and a cup of coffee for breakfast.
Sometimes, he’d play basketball on an arcade machine to get his limbs moving. Other times, it would be mahjong or Rummi-O – games that stimulate cognition – with the other seniors. Before the COVID-19 outbreak, the centre also organised mass exercises or Zumba classes.
A mass exercise session at St Luke’s ElderCare Marine Parade Centre, before COVID-19 struck
When Singapore’s ‘circuit breaker’ period kicked in in April, all senior care centres were closed. Since St Luke’s ElderCare reopened on Jun 29, precautionary measures have been in place, such as mask wearing, safe distancing, good hand hygiene, and infection control practices, in line with the Health Ministry’s advisories.
Those activities it has resumed are now conducted differently – like reminiscence therapy.
The staff used to bring out nostalgic items from yesteryear – vinyl records, analog phones, even old soft-drink bottles – to trigger clients’ memories of their past. Such therapy is said to have a calming and confidence-building effect on folks with dementia.
Since the pandemic, the staff have switched to using digital tools such as iPads, and with groups of no more than five persons.
READ: The power of memory: Nursing home recreates old streets to help residents
GETTING TO KNOW YOU
Having a variety of activities, said centre supervisor Jacob Chong, is important “to enhance their quality of life and keep them engaged. It also helps to slow down the onset of dementia”.
That’s why the 29-year-old goes out of his way to research new activities to help his clients. He knows, from personal experience with his own grandfather, what it is like to deal with the disease.
In recent years, centre-based care has become a more popular option compared to nursing homes for caregivers of the elderly, a Lien Foundation report in 2018 found.
St Luke’s ElderCare Marine Parade Centre opened in 2018
But even with such help around, the dementia journey is still filled with ups and downs – and care staff have learnt to deal patiently with their clients’ erratic moods.
Said Geraldine of William: “There are good days when he can answer questions very easily. But there are days where he will give up and say, ‘no you tell me, I don’t know’.”
This means the centre’s 15 care staff have to learn what makes their clients tick – so they know, for instance, when William gets agitated, to assure him that Geraldine was coming for him; or, to put Geraldine on the line to talk to him.
They also know every one of the centre’s 130 clients’ names, what their favourite songs are, how they like their lunch to be prepared, how they like to occupy their time.
In William’s case, it’s hanging out with three companions.
William (far right) and his couch buddies
His newfound friendships are a particular joy for granddaughter Bethany. “Before day care, he seemed a bit lonely. So I’m grateful that he’s able to be happy with his friends, even if he doesn’t remember their names,” she said.
RELAPSE
The difference that the centre has made in their lives was made stark when William had to stay home during its temporary closure.
The family tried to keep him occupied. They created a “grandpa’s playlist” of Elvis Presley hits that they played while he did his exercises.
The centre held Facebook livestream activity sessions, checked in with clients via phone or video calls, and mailed out worksheets – which inspired Bethany to create her own homework for grandpa.
Geraldine Lim and eldest daughter Bethany Tan, along with others in the family, tried to keep grandpa occupied. But William listens only to Geraldine, who is his main caregiver.
But all this couldn’t compare to having a regular daily schedule and centre staff on hand to care for William. Said Geraldine: “You have to deal with office work (at home) and looking to his needs, so sometimes there’s a tension.”
He began showing “signs of deterioration”, like easing himself in the bedroom; and he would nap much of the day away.
The result was that he was wide awake at night, and fell back into his old escape-artist habits – once climbing over the garden wall in his sarong at 4am, and going missing until 2.30pm.
READ: ‘It can be a lot to bear’: Dealing with dementia during the circuit breaker
When the centre reopened after nearly three months, Geraldine was initially worried he might not be able to slip back into his old routine, and about potentially exposing him to the coronavirus.
But her concerns were quickly allayed by the centre’s precautionary measures and how instantly William responded to seeing his friends again. “He’s sleeping better at night now,” she said.
Post-circuit breaker, activities are now conducted in smaller groups with safe distancing, (Photo: St Luke’s ElderCare)
LESSONS FROM DEMENTIA
Now able to focus on her work with her mind at ease, Geraldine said: “It’s comforting because you know he’s somewhere safe, meals are provided, and there’s a regular routine.”
William still tries to go wandering – sometimes the moment he gets off the taxi that brings him home. But, the family is no longer constantly on their toes.
“I think (his dementia) kind of pulled us together, actually,” said Geraldine. “We look out for each other, we look out for grandpa. We just have to adapt as the situation gets worse.”
Said Bethany: “Seeing the way my mum loves grandpa makes me think about all the patience I would need to cultivate, should the day ever come (for my parents).”
Geraldine’s encouragement to those struggling with a loved one’s dementia: You are not alone. From the kind strangers who brought William home, to the day care centre’s staff, to friends and family, she said: “There is always help available – you just need to ask.”
This story by CNA Insider was done in collaboration with Gov.sg. Up to 80 per cent subsidies are available for Singaporeans for home and centre-based services, depending on household income per capita. Details at www.aic.sg/care-services/day-care
WHERE TO GET HELP:
AIC HOTLINE: 1800-650-6060 or dementia day care centre locator
DEMENTIA FRIENDS APP for Android and Apple iOS
HPB HEALTHLINE: 1800-223-1313
ALZHEIMER’S DISEASE ASSOCIATION’S DEMENTIA HELPLINE: 6377-0700
