Wednesday, 25 September 2013

Caregiver Crunch

Singapore's caregiver crunch
Services that ease their load must be enhanced as population ages: Experts
By Radha Basu, The Sunday Times, 22 Sep 2013

Singapore's rapidly ageing population has sparked a race to meet the surge in demand for care services for the elderly and infirm.

Tied closely to this but less visible are the needs of a growing army of caregivers whose lives are disrupted when a family member needs round-the-clock care as a result of old age or illness.

There are children looking after parents, husbands caring for wives, and parents spending their 60s, 70s and later years looking after bed-bound children.

While services catering to such families have risen sharply in recent years, a recent survey by the Duke-NUS Medical School found that fewer than 5 per cent of caregivers interviewed used individual support services such as home nursing, home medical and respite care programmes.

Yet the waiting time for a place at a day-care centre, for instance, can be nearly two months.

"The day-care waiting lists show that people may not be using these services because their capacity is still very limited," said Associate Professor Angelique Chan, who led the study.

There were around 380,000 people aged 65 and above last year, and the number is expected to hit 900,000 by 2030.

An estimated 210,000 people aged 18 to 69 provide regular care to family and friends, and this number too is expected to rise.

The Ministry of Health (MOH) told The Sunday Times that the number of places available at integrated day-care centres for the elderly will double from 230 to 470 over the next six months and by 2020, there will be more than 5,500 places.

These centres offer social support, dementia care, physiotherapy and basic nursing care all under one roof. This will partly offset the rising need for day-care services.

In addition, there are 60 eldercare day centres which can take in 2,800 older folk. These range from centres that offer opportunities for socialisation for relatively fit people to those that cater to people who need more care, such as dementia or stroke patients.

Existing day-care centres have a nationwide occupancy rate of 84 per cent, but the waiting time for a place in some locations can stretch to 50 days.

The Agency for Integrated Care (AIC), set up by the Government in 2009 to coordinate eldercare services, helps connect older folk to support services based on referrals from health-care professionals.

Centre-based services such as day-care centres are most in demand, based on referrals received by AIC between September 2012 and last month, says the Health Ministry. This is followed by home care and finally residential care services, said an MOH spokesman. The ministry declined to give figures on the exact number of referrals for each of the services.

AIC chief executive Jason Cheah said some caregivers may not have sufficient information to help them decide what kind of care is required for their loved ones.

They may also think that they can cope by themselves because of a lack of awareness on caregiving. This may lead to them experiencing "caregiver burnout".

"So there is a need to better equip caregivers with the knowledge, skills and support to care for their loved ones and themselves," he said.

Those working with caregivers, meanwhile, say services need to be beefed up. Insufficient eldercare options within the community are a key challenge, said director Manmohan Singh from the AWWA Centre for Caregivers.

There are more than 99,000 childcare places in Singapore right now, compared to around 3,000 for day-care services for the elderly at present.

"Given the emerging shape of the national population pyramid, eldercare centres should be as accessible as childcare centres," said Mr Singh. "But they're not."

 He added that employer support for family caregivers, while important, is also currently "weak, grudgingly granted or quite absent".

 "We must do better as a community to support our most vulnerable caregivers," he said.









Behind the silver surge
Senior Correspondent Radha Basu uncovers stories of grit and grace, love and loss, strength and sacrifice, as families care for frail old folk at home
The Sunday Times, 22 Sep 2013

 Joyce Lim, 57, works from 9am to 5pm scheduling appointments for 63 doctors who see thousands of patients daily at one of Singapore's busiest hospitals.

 A slip-up on the job could mean wasted time and frayed tempers, for doctors and patients alike.

At the end of her working day, she heads to her mother's Bukit Merah flat. There, she spends three hours every evening sponging, cleaning and caring for her 83-year- old mother and 66-year-old brother, who suffer from multiple illnesses.

It is past 9pm before Ms Lim, who has a grown-up daughter, begins the hour-long commute from Bukit Merah to her three-room flat in Clementi, where her own household chores need to be done.

It is often past midnight by the time she gets to bed, only to wake up five hours later and start the routine all over again.

"It's what is expected of me," she says with a sigh, at her mother's flat.

Her smile is tired. Her eyes, ringed in black, betray sleeplessness. And she weighs only 38kg. "They depend on me for everything."

There are an estimated 210,000 caregivers here and with the silver surge in Singapore, their numbers can only grow.


Around half the nearly 1,200 caregivers surveyed have jobs. Yet, they spend 38 hours every week on caregiving chores, which is like holding a second job. Only half employ a maid.

And although support services - such as home medical care or adult day care - are on the rise, take-up rates are low. Only 3 per cent of those surveyed use day rehabilitation services, for instance, while 4.5 per cent use home medical services.

Principal investigator Angelique Chan from the Duke-NUS school says the results show that long-term care services available are not in sync with what people need.

"The operating hours may not be suitable, costs may be high and people just don't see the value for money," she says. "This needs to change."

The survey also covered care recipients and another 800 pairs of potential caregivers and care recipients - people who are well today but could need help soon.

In the wake of the study results, made public in May, The Sunday Times interviewed dozens of caregivers, care recipients, eldercare experts and professionals to piece together a phenomenon that is inexorable, complex and challenging.

Living longer, not well

People are living longer than ever before but, for many, living longer does not mean living in the best of health. Families, meanwhile, are shrinking.

And to top it all, Singapore is one of the fastest-ageing societies in the world, with the proportion of people aged 65 set to surge from around 380,000 now to 900,000 by 2030.

There are no publicly available projections of caregiver numbers yet. But the latest National Health Survey - made public in November 2011 - collected caregiver data for the first time.

The Ministry of Health survey, which polled around 4,350 people, showed that 8.1 per cent of respondents aged between 18 and 69 - or potentially 210,000 people - were already providing regular care to sick or frail family members. Close to 40 per cent had been caregivers for more than a decade.

Data from both the Duke-NUS and Health Ministry surveys found that most caregivers are married, employed individuals in their 40s and 50s. Women outnumber men as caregivers and recipients. The Duke-NUS survey found that adult children make up nearly two-thirds of all caregivers.

But cold numbers tell only half the story. As The Sunday Times interviewed close to 20 families caring for ailing loved ones at home, the sheer physical and emotional exhaustion of caregivers was plain to see.

Elderly caregivers - particularly spouses - were especially vulnerable to stress. As Singapore ages, their ranks can only grow.

Retired cleaner Ang Hock Guan, 84, for instance, is sole caregiver to his wife, Madam Tan Kim Yer, 94, and her daughter from a previous marriage, Ms Soh Mong Chee, 64.

Both mother and daughter are nearly blind. Mr Ang cleans their two-room rental flat and does the laundry for all three of them. The couple's daughter, Ms Ang Yoke Siew, who is in her 50s, comes by to help bathe her mother once a week.

NTUC Eldercare has arranged for them to get free lunches on weekdays and provides dried food supplies to help them cook dinner.

But there is no one to meet the daily care needs.

"I do what I can and try not to think of the future," Mr Ang said in Hokkien.

Not just a silver issue

Caregiving is not just a "silver issue", says Dr Jason Cheah, chief executive of the Agency for Integrated Care (AIC), which was set up by the Government in 2009 to coordinate the care needs of thousands of frail old folk.

"It can concern everyone at some stage of their lives," he said. Anyone might end up a caregiver to parents, grandparents or an ailing spouse.

"It is important for Singaporeans to learn about eldercare and caregiving early to be better prepared for the journey, should the need arise."

So far, experts say, most people deal with caregiving in a crisis mode. Many adult children or spouses find themselves forced to give up their jobs to look after family members, putting their own financial future in serious jeopardy.

Take Mr Tan Chong Leng, 56, and Madam Azizah Mohamed Noor, 42, for example.

Mr Tan, a former painter, stopped working late last year when his mother, Madam Ong Siew Hoong, 85, fractured her hip and lost the use of her legs after a fall.

The wizened old woman with a warm smile is fully dependent on her son for her day-to-day needs, including bathing and changing of diapers.

Sitting in their one-room rental flat in Lengkok Bahru, Mr Tan says: "She can't even walk, so it's impossible for me to leave her alone at home and work."

Madam Azizah, who lives nearby, quit her part-time job as a cleaner in a bank to look after her widowed mother, Madam Fatimah Hadir, 69, ever since the older woman collapsed suddenly one morning in May this year. She has kidney disease, diabetes and knee problems on top of a pre-existing speech impairment.

A divorced mother of four, Madam Azizah used to leave her youngest child, three-year-old Siti Nurjannah, in her mother's care while she went to work. So caregiver has turned care recipient overnight. She needs to be fed, bathed and changed and needs a wheelchair to get around.

When her mother's condition stabilised, Madam Azizah recently returned to work for two hours a day. "I just pray that nothing happens to them when I work," she says, of leaving her invalid mother and young child at home alone.

Although the poor are hardest hit, caregiving woes strike better-off families too.

Single mother Hayati Suaidi, 42, spent the entire day in hospital recently with her mother, Madam Haisah Satni, 76, who has leukaemia, before returning to her five-room Bedok flat and her father. Retired driver Suaidi Said, 80, has a slipped disc and severe mobility problems.

Madam Hayati, a diploma holder, quit her full-time job after one-too-many hospital emergencies. A former employee of Outward Bound Singapore, she recently started her own small business running outdoor activities for schools and other interested groups.

"My own company is uncharted territory for me, but at least it allows me more flexibility," she says. When she takes short business trips to Malaysia, her 15-year-old son helps tend to his grandparents.

Madam Hayati, the only child from her father's second marriage, has not yet sought any state support as she believes there are "many more who need it more". But her future is fraught with worry.

Ask about care arrangements as her parents get older and she breaks down in tears. "I just leave it to God," she says simply.

Help on the ground, meanwhile, is on the rise. According to AIC, there are more than 20 programmes that either directly or indirectly help caregivers and most were initiated in recent years.

The trouble is, many do not know the help exists.

Touch Caregivers Support, which runs a helpline, received more than 3,000 calls last year, a 70 per cent rise since 2010, when the line was set up.

Its director Kavin Seow points out that one of the most common queries is about "elder-sitting", where someone will stay with an elderly person at home while the caregiver tends to other chores or simply needs a break.

The cost for such a service, at more than $20 per hour, is high even though there are some subsidies for poor families.

"In order to manage costs, caregivers may engage this service sparingly, denying the most appropriate care necessary for the older person," says Mr Seow.

Where services do reach caregivers, they are accepted with gratitude.

The Aged Care Transition (Action) Programme is one of the more popular schemes under which AIC care coordinators help connect families of patients recently discharged from hospital to various community support services.

Ms Joyce Lim, who is a hospital administration clerk, has been a beneficiary of the programme since her mother, Madam Soon Kim Pian, 83, who has gout, rheumatoid arthritis and osteoarthritis among other conditions, was discharged from hospital more than a year ago.

Since 2011, Madam Soon has been getting subsidised meals delivered to her doorstep.

AIC case manager Dawn Low drops in fortnightly. "It's good to have someone to talk to - it eases my stress," says Ms Lim, the youngest of five children.

But still, her day-to-day burdens remain unrelieved.

She tried putting her mother in a nursing home but, at the last minute, the feisty old woman refused to go to what she described as a place with "rows of beds and nothing else".

Day-care centres for the elderly are not an option either as Madam Soon needs to lie down frequently, a service most such centres do not provide.

One of Ms Lim's sisters used to help, but reduced her commitment once she had to start tending to four grandchildren. The other sister, she says, is uncontactable.

Both her brothers are ill. The elder one works odd jobs and has knee problems. The second, who lives with Madam Soon, has been treated for mental illness since he was 19.

Ms Lim says she tries her best to be a filial child but her mother can be hard to please and does not care for the subsidised meals delivered to the house.

So she often ends up buying food she cuts into bite-size pieces for her mother.

"She raised five children as a single mother working as a washerwoman," says Ms Lim. "She just can't understand why I find it hard to care for just two of them."



This is the first of a two-part series on caregiving in Singapore. To share in the journeys of love, loyalty and sacrifice, log on to www.razortv.com.sg. The second part will appear next Sunday.


They come from all walks of life – parents, spouses, children, even strangers – but the trials they face are similar. Long hours often on top of a full-time job, emotional and physical strain, and all too often, financial stress as well. Yet they toil on, day after gruelling day, driven by love and family bonds.




HUSBAND & CAREGIVER
The day he lost his soulmate to dementia
By Radha Basu, The Sunday Times, 22 Sep 2013

 Madam Ng Mui Chuan, 61, has wandered into the kitchen in the middle of the night to turn on the gas for no reason.

She has strewn rice and oats all over the kitchen, played with her faeces and spent hours on the floor in a foetal position weeping. For no reason at all.

As her dementia advanced, so did her fits of anger and paranoia, says her husband and sole caregiver, Mr Lim Fah Kiong, 68.

When out in public, she would point at strangers and make "scolding noises". Fearful of taking her out or leaving her alone indoors, Mr Lim eventually became a prisoner in his own home.

For the past four years, he has helped his wife eat, dress, shower and go to the toilet. He also cooked, cleaned and did all the other household chores.

He could afford a maid, but chose not to have one. "I was afraid Mui Chuan might hit her. I just can't live with that fear," he says.

When her condition deteriorated late last year, his wife would keep waking him up at night. "I could sleep only one or two hours at a stretch, week after week."

Robbed of sleep for days, there were times he felt he was losing his sanity. He would often break down in tears, he says, but never in front of her.

He knew she had to be in hospital the day she assaulted him with a clothes hanger and tried to smash a fish tank.

He is on the lookout for a subsidised nursing home, but with long waiting lists for dementia patients, the former SingPost executive is bracing himself for round two of his caregiving ordeal.

The couple are childless.

It was not always this way. Mr Lim and Madam Ng retired when they were in their 50s in 2005, eager to spend their golden years with love and laughter - without the stresses of work.

They had married late in life, after meeting at a training course. They planned "makan trips" around the island and to Malaysia.

"We hoped to grow old together as friends and soulmates," said Mr Lim. "Just like when we were young."

But that was not meant to be.

Sitting alone in the study of his spacious and neat five-room flat, decorated with photographs and Valentine's Day cards from his wife, Mr Lim lets on that her problems began innocuously enough.

She would be forgetful and get angry for no reason. She began washing her hands obsessively, every time she saw a tap.

Once a genial, gentle woman, she grew suspicious of even her closest friends. "They hammer me when you're not around," she would tell him.

He took her to a psychiatrist in 2010 after she tried to jump from their eighth-floor flat. She was diagnosed with obsessive compulsive disorder.

He installed window grilles. He soon had no time to tend to his beloved plants and the ornamental fish he kept in a giant double- decker fish tank in his living room.

"My bougainvillea are dead and most of my big fish," he said sadly, as a lone golden dragon fish swam in one of the tanks.

It was only after she was referred to the National Neuroscience Institute in 2011 that she was also diagnosed with Alzheimer's disease - by then already in its moderate stage.

"With so much hype on dementia being an old person's disease, few realise that you can get it even before you hit 50," said Mr Lim.

Despite medicines, the disease continued its inexorable march. By early this year, Madam Ng could not recognise most of her friends and family. He is bracing himself for the time when she forgets him too.

She failed to recognise everyday objects too. When the phone rang, she would put the television remote control to her ear. She left wet slippers on the bed. And once, trying to dress herself, she wore a panty like a shirt.

She went to a day-care centre for dementia patients for one year till early this year, but her frequent "crying, praying and chanting" frightened the other patients.

"I was told I must withdraw her till she gets better," he said. "But she never did."

These days, Mr Lim follows a familiar routine. Every morning, he takes a bus from his Bishan home to the Institute of Mental Health, where his wife is warded, only to return late in the evening.

September has always been a special month for the couple. His birthday is on Sept 7 and their wedding anniversary, five days later. They have been married 25 years now.

His wife did not remember either occasion. He spent both days sitting next to her in hospital.

"There is nothing left to celebrate any more," he said.





CHILDREN & CAREGIVERS
Family pitches in for mum
By Radha Basu, The Sunday Times, 22 Sep 2013

 A week after Mother's Day in 1999, Madam Mary Koh suffered a stroke that robbed her of the ability to talk, walk or take care of herself. She was then 48.

Her daughter was then studying at a university in Perth while her son was at a polytechnic.

In the early years, her husband Robert Tan cared for her with the help of a maid as the children completed their studies and started working.

Mr Tan used to own the Red House Bakery in Katong which closed when the lease expired in the early 2000s. His wife, confident and English-educated, helped make some of the bakery's treats.

"To us, she was a friend and the best role model ever," says her daughter Jaime Tan, 35.

Today she and her brother Daniel, 32, have eased themselves into much bigger roles as caregivers in a home filled with love, laughter and hope.

After years of therapy, Madam Koh, now 62, has learnt to read and write again. She is paralysed on her right side and speaks in only monosyllables. But she communicates with her ever-changing expressions.

Her daughter, a former marketing professional who spent four years in China and Britain, is taking a break from a full-time job to look after her mother.

Ms Tan commutes from the East Coast condominium that she shares with her boyfriend to her parents' five-room Bishan flat every morning to play nurse, teacher and companion. She helps bathe, dress and chat with her mother, and supervises her as she uses educational apps on an iPad.

In the evenings, her brother Daniel takes over. He monitors his mother's medication and watches TV with her. Sometimes, he clips her nails and helps her do exercises before bed.

Ms Tan says he and her father are her ever-present "caregiver support group".

"It's so reassuring to know that I have at least two family members to depend on with mum's care. It's impossible to do it alone," she says.

Her father, 63, has several health conditions, including heart disease and diabetes. With his children taking on more of the caregiving, he is beginning to enjoy his retirement, spending time with friends.

When The Sunday Times visited their home, Madam Koh was finishing her breakfast, a smoked turkey sandwich. She laboriously picked it up with her left hand and with slow, jerking movements, took small bites.

"There are so many little things we take for granted," Ms Tan says, as she watches her mother quietly. "I've been forced to learn empathy."

Her caregiving philosophy, she says, centres on not regarding her mother as a child. "We still treat her as the strong, independent woman she once was."

Madam Koh has a daily roster of activities planned by her daughter. She goes to a day-care centre once a week, and has speech therapy and physiotherapy around five times a month. And she loves shopping and going out for meals.

Her bright pink iPad is a Mother's Day gift from Daniel. Brows furrowed, she jabs the screen repeatedly to fill in each blank of a word-making program to spell simple words like "table", "ice" and "crayons".

Each time an automated voice announces "well done", she giggles, eyes lighting up with the joy of achievement.

When her daughter gently asks her whether the word "necklace" should end with an "e" - she scowls indignantly.

"That's her saying, 'Of course it should, you silly girl'," laughs Jaime. "She may not be able to speak well, but her personality still burns as brightly as before."









DAUGHTER & CAREGIVER
Cancer struck three times
By Radha Basu, The Sunday Times, 22 Sep 2013

 She was just nine at the time, but Maehysha Yim, now 34, remembers her cancer-stricken mother bent over in a hospital carpark "puking her guts out", cradled gently in her father's arms.

She remembers how her mother, Madam Chan Ching Han, gasped for air towards the end, dying at age 46. And she remembers the years her father threw himself into his role as a single parent, ferrying her from school, cooking and cleaning.

So when retired businessman Yim Wing Yam fell prey to prostate cancer in 2008, his only daughter took an extended break from her job as an events management executive to care for the man who was both mum and dad to her. She has an older brother who is married.

Through radiation, surgery, chemotherapy and endless hospital visits, she was her father's main support. She also brought forward her marriage to former colleague Maspol Husain to give her father something to look forward to. His cancer was in remission, and he was there on their happy day.

Between caregiving and preparations for her wedding, Ms Yim began losing weight. She attributed it at first to a wisdom tooth extraction, and then to caregiver stress.

In late 2009, barely two months after her wedding, she was diagnosed with stage 2 breast cancer. "It was bizarre - beyond belief, really," she recalled. "You just don't think this can happen to you at age 30."

Her father turned caregiver again as she went through surgery and chemotherapy herself.

In August last year, shortly after her cancer went into remission, he got news that his was back, this time in an incurable form.

"It was quite the emotional roller coaster," Ms Yim said in her four-room Woodlands flat, surrounded by pictures of her parents. "We could each bear the news of our own illness. But it's hard seeing your loved one suffer."

Mr Yim died in April this year, aged 77, and Ms Yim's cancer is in remission. She is rebuilding her life with her 35-year-old husband.

The emotional burdens of caregiving can be harder to bear than the physical ones, she said. "Towards the end, I could see my father was afraid of death. But he was a part of the strong, silent generation - he refused to share his fears."

When she was told last August that he had only six months to live, she decided not to tell him. "I broke down and cried, but had to hide it from him. I did not want him to feel worse."

Still, racked as he was by fever, pain and vomiting - unable to eat anything but ice cream - he might have known his end was near. He lost 26kg. He kept the doors and windows of their flat closed. He shunned friends and relatives. The television became his lifeline.

One of her most trying tasks was keeping well-meaning relatives and friends from smothering him with pity. "They all loved him and would come and say, you must eat, you will get well," she said. "But I think he knew those were false hopes."

Terminally ill patients, she said, should be left to do what makes them happy, as long as it does not compromise their safety. "He wanted to eat ice cream five times a day and I let him," she said.

Ms Yim feels lucky that not only did she have her husband and some close friends with her every step of the way, but she also received counselling from HCA Hospice Care, Singapore's largest home hospice provider. They would visit her father once or twice a week.

"They focused not just on him, but also on me, always asking me how I was feeling, and giving me some time off when they paid a home visit. My father could be quite rude because he felt he did not need any help, but they never complained," she said.

Her husband was her strongest support, she said, though she sometimes gave him a hard time about his long working hours. He took it in his stride, with humour.

"Caregiving is hard work, and it's normal for caregivers to be stressed out and unreasonable," said Mr Maspol. "They need love, patience and support."





MOTHER & CAREGIVER
75, and still looking after son
By Radha Basu, The Sunday Times, 22 Sep 2013

 Madam Tan Pek Eng is 75, has high blood pressure and high cholesterol and has a metal plate inserted in her knee.

But failing health has not stopped her from caring for her paraplegic, bedridden son, Mr Chun Ee Chew, 53.

The family has a maid, but Madam Tan insists on taking charge.

Every morning, she starts her day by cleaning his soiled diapers. It's a messy business and, given her age, can take up to two hours.

After washing up, she serves him breakfast. Next, she helps him exercise his legs and massages him for half an hour. When he gets bed sores, she helps change the dressing and apply medicine. "If we turn him once every three hours or so, bed sores may not occur," she said. "But I am growing old and not as efficient as I used to be."

It is what she has been doing for 25 years, ever since the second of her seven children had a motorcycle accident in 1988. And she's not about to give up.



 The family maid, Ms Ngatpiati, 43, who has been helping look after Mr Chun for nearly two years, showers him and cleans his urine bag.

"But she has many other duties, so I take over as much as I can," said Madam Tan in Mandarin.

It is tiring as her son, who is paralysed on his right side, is heavy. "I have no choice."

The strong-willed woman's love for her son is obvious as she describes his motorcycle accident. "He was a good, helpful boy, taking a friend who had hurt his leg to see a doctor," she said. "He got hit by a taxi and it changed his life."

One of her younger sons, a taxi driver, his wife and teenage daughter share the flat.

"It's good to have them live with us," said Madam Tan. "I don't think I could deal with medical emergencies alone at my age."

Like his mother, Mr Chun also has high cholesterol and diabetes. Mother and son spend $350 a month on medicines.

"I feel touched that she has taken care of me for so long," Mr Chun says. "But I've had a tough life too, not being able to do so many things I want to do."

When he was better, he used to travel to Waterloo Street to sell packets of tissue paper. "But the income was very little."

He would like to move to a nursing home to spare his ageing mother the daily stresses of caring for him.

"But we must pay a lot of money. Difficult," he says.

He did not leave the flat for 11 years after his accident. The family was able to afford a wheelchair and the services of a maid only in 1999, after receiving an insurance payout for the accident.

Mr Chun tries not to think of those days, but of more pleasant times.

"Once my mother bought me two durians," he says, his face breaking into a smile for the first time. "I was so happy."





VOLUNTEER & CAREGIVER
Friend ensures help is just a call away
By Radha Basu, The Sunday Times, 22 Sep 2013

 When she found her eldest brother bleeding after a fall early one morning in May, 77-year-old Koh Um Tee immediately called her friend Wu Yu Chin.

 Ms Wu remembers that phone call: "She was crying in Hokkien on the phone, saying, 'Come quick, my brother is dying, come quick!'"

The housewife, 44, is a volunteer who has known Ms Koh and her two older brothers for eight years. The siblings, all unmarried, share a three-room flat in Circuit Road.

Ms Wu was at an appointment when the call came, so she promptly dispatched her husband, Mr Michael Chua, 46, to find out what was wrong. He knew the Koh siblings well too.

He arrived at the flat to find Mr Koh Hock Seng, 83, lying in blood and urine - conscious but very, very weak. He called for an ambulance immediately.

Mr Koh had suffered a massive stroke. After more than three months in hospital, he was moved to a nursing home last month. It remains uncertain if he will ever return home.

Before his stroke, the retired deliveryman had been the most able and fit of the siblings.

He was the main caregiver to his younger brother, Hock Teck, 80, who has kidney failure and lung problems. Until last year, the cheerful older man would accompany his brother for dialysis three times a week.

Then his sister fractured a leg and needed care herself. Ms Wu arranged for a transport operator to ferry Hock Teck for dialysis, freeing Mr Koh to care for his sister. She has since recovered, but cannot walk well.

Ms Wu first got to know the family through the Buddhist Tzu Chi Foundation, where she was a volunteer, in 2005. At the time, the siblings did not have a fan or a phone in their home; they were living on their savings and survived mainly on canned food.

In the early years, she visited them almost every day.

She bought them a mobile phone and began hooking them up with various government help schemes.

"If you know where to look, there is a lot of help available for the poor," said the Taiwan-born Ms Wu, who has four children aged between three and 13. One of her sons is YouTube sensation Chua Jin Sen, known popularly as Dr Jia Jia.

The Koh siblings now receive medical and financial assistance, free transport for dialysis and subsidised meals at home.

Their home, which still holds relics such as a kerosene stove and black light switches, has been renovated and now features grab bars and non-slip tiles - paid for by the state after Ms Wu sought the help of the Housing Board and the Community Development Council.

She is now part of a team of volunteers who take turns to visit the Kohs at home and in hospital.

When The Sunday Times dropped by one recent afternoon, Ms Koh was chatting cheerfully with Ms Wu.

"Your daughter is very pretty," she said in Hokkien. "When will she come again?"

Ask the elderly woman about Ms Wu and her wizened face breaks into a wide smile. "They don't need to come, but they come anyway," she said. "And for that, I am grateful."





MAID & CAREGIVER
From stranger to family"s rock
By Radha Basu, The Sunday Times, 22 Sep 2013

 "She"s my arms, my legs, my eyes," says accounts executive Alice Chua gratefully, of her Indonesian maid Rokayati. "I feel so lucky to have her."

Born in Bandung and a mother of two, the helper worked in Taiwan before coming to Singapore two years ago and speaks fluent Mandarin. She looks after Ms Chua"s ageing parents and two mentally challenged adult siblings at the family"s Ang Mo Kio flat.

According to a study by Duke-NUS Medical School, around half of all families looking after frail old folk at home use the services of a foreign maid.

A mother of two, Ms Chua lives with her own family in Woodlands, so the day-to-day care of her parents and siblings is left entirely to the woman the family refers to affectionately as Yati.

Ms Chua"s mother, retired canteen helper Yeoh Choon Kee, 70, has low IQ and a host of illnesses including schizophrenia and kidney failure. She needs dialysis thrice a week.

Her husband, retired airport worker Chua Hwa Boon, 83, has failing eyesight.

Three of the couple"s six children are mentally ill. One is a long-stay patient at the Institute of Mental Health, while the other two - a son and daughter - are under Ms Yati"s care.

The siblings cannot tell the time, do not know how to handle money and used to spend much of their time at home. But with Ms Yati doing the bulk of the household chores, both have started work as coffee shop helpers.

Madam Yeoh is completely dependent on Ms Yati, who showers, dresses and feeds Madam Yeoh and helps her go to the toilet. She also accompanies her to dialysis.

In two short years, the cheerful and gregarious farmer"s daughter has morphed from stranger to the family"s rock.

"She is the only strong and stable person there who knows what to do in emergencies," says Ms Chua.

And there have been many. Once, late last year, when Madam Yeoh began having fits, Ms Yati accompanied her to the hospital in an ambulance and stayed by her "Ah Ma" when she had to be warded.

Before Ms Yati arrived, Ms Chua would visit her parents and siblings every day to make sure they were okay.

It was "very, very tiring", she says, as she had to also juggle looking after her own two children with a full-time job.

Two earlier maids did not work out. One was spooked by Madam Yeoh"s schizophrenic hallucinations. The other would bully the old folk.

"We thought we would try a new helper just one last time - and it was like winning 4-D," says Ms Chua.

Ms Yati, on her part, finds her employers to be considerate. She has her own room, even though the family lives in a three-room flat, and they ensure she gets enough rest. And she eats what they do.

While she confesses that the first few months were tough, Ms Yati says she has grown close to her beloved "Ah Ma" and the Chuas.

"If she is sick, I cry," she says. "They are all so helpless. Now I love the family."





Caring for those who provide care
By Radha Basu, The Sunday Times, 22 Sep 2013

 Mr Goh Swee Ann, 78, has several health problems. A stroke patient, he also has diabetes and is incontinent.

He needs round-the-clock care and a wheelchair to get around. His wife, Madam Tan Lung Hiang, 72, also has serious heart problems. She is frequently out of breath and is in no position to look after him.

Their only child, Jason, 30, who lives with them, needs to work.

A few years ago, the family would have had no choice but to put Mr Goh in a nursing home.

But these days, there are better eldercare options. Thanks to the Singapore Programme for Integrated Care for the Elderly, the retired gardener can get nursing care in a day-care centre and return home to his family at night.

After subsidies, it costs $350 a month, cheaper than having a maid. "With my dad well taken care of for the whole day, I can go to work in peace," said his son, a polytechnic graduate.

As Singapore ages, the Agency for Integrated Care (AIC), an organisation set up by the Government to coordinate eldercare services, has been making a concerted effort to crank out new support services.

There are more than 20 such services that directly or indirectly benefit caregivers. Most were started after the agency was set up in 2009.

Some, like the Aged Care Action Programme, help frail old folk make a smooth transition from hospital to community care. More than 30,000 families have benefited since the programme was initiated in 2008.

Others, like the caregiver training grant, seek to equip caregivers with skills to take better care of ailing loved ones at home. Yet others provide respite care, information and referral services and financial assistance.

New programmes are being regularly launched - and there have been two in recent months. The Caring Assistance from Neighbours (CAN) programme enables frail elderly people to be looked after by their neighbours in return for a fee of $80 a month for each person they care for.

Bukit Batok housewife Rahimah Nirin, 36, for instance, keeps an eye out for Madam P. Lakshmi Govinasami, 85, who has heart disease, asthma, diabetes, high cholesterol and high blood pressure. Madam Lakshmi, who must take 10 pills every day, lives with a hearing-impaired son who is an odd-job worker.

Madam Rahimah, who lives in the opposite block, drops by every morning to ensure that she has taken her medicine, check on her health and to make sure that she turns up for medical appointments.

Despite their age difference, the pair have been friends for 10 years. "She is like a grandmother to my daughter," said Madam Rahimah, mother to a nine year old. "I have been visiting her regularly for years. Now I just come every day."

There are 41 carers looking after 237 older folk as part of the CAN programme.

Despite an increasing number of programmes, studies suggest that take-up rates of community care services are low.

Associate Professor Angelique Chan from the Duke-NUS Graduate Medical School, who led a large research study on informal caregivers here, found that take-up rates were less than 5 per cent each for services such as day-care centres, home medical, home nursing and caregiver support services.

The study found that participants said they did not need services. But there could be other reasons, said AIC chief executive Jason Cheah. For instance, many caregivers may not have sufficient information to decide what kind of care is required for their loved ones. "This is where AIC and its partners are working together to better reach out to and educate our caregivers," he said.

There are others who may believe they can cope, said Dr Cheah. "Caregiver burnout can be a real phenomenon, however, and we need to help caregivers recognise when they need to take a break."

Professor Chan and eldercare expert Mary Ann Tsao believe that the small number of people using eldercare support services could be the result of a mismatch between demand and supply, and the low overall capacity.

"If you're working, you might need a day-care centre that's open from 7am to 7pm," said Prof Chan. "Having one that operates from nine to five will be of no use at all."

Similarly, a transport service to ferry wheelchair-bound folk to a day-care centre may be of little use if it operates "kerb to kerb" rather than door to door, said Dr Tsao, who chairs the Tsao Foundation, which provides direct services and does research training and advocacy work on ageing well.

Short-term respite options, like when maids go on home or compassionate leave, is also in demand, said Centre for Caregivers director Manmohan Singh.

"This is an area which private nursing homes are not sufficiently incentivised to address," he said. "They favour longer-staying patients."

Support for caregiving employees must also be "emphasised and embraced by society", especially by employers, said Mr Singh.

Caregiver leave - while quietly adopted by the public sector and a growing number of social and health-care agencies - must be embraced by private companies too, he said.

Many family caregivers say that taking leave for caregiving is frowned upon by employers and even human resource professionals. "Some caregiver employees have told us that they were pressured into resigning," said Mr Singh. "This must change."

His centre, which has reached about 33,000 past, present and future caregivers through outreach and education programmes, is trying to do more.

A programme where former caregivers provide emotional support to current ones, for example, is being ramped up. Caregivers are likely to open up more to those who have walked the long, hard road before. "We believe this service has great potential," he said.




As Singapore ages and family sizes shrink, spouses and children will take on a bigger role in caregiving. In the second and final part of a special report on caregivers, The Sunday Times catches up with two caregivers who are already fulfilling those roles.



ELDERLY CAREGIVER
Caregiver to wife till her death, and now son
By Radha Basu, The Sunday Times, 29 Sep 2013

 For eight long years, retiree Lim Ping Kiong, 77, tended gently to the daily needs of his bedridden wife, Madam Gan Siew Geong.

The mother of four lost the ability to talk, laugh and walk after two brain tumour operations in 2005.

Her husband of nearly 50 years sponged and dressed her and changed her diapers daily. At meal times, he fed her through a tube.

Madam Gan died in her sleep late last month, aged 74.

"She was in hospital first and then at a community hospital for half a year," said Mr Lim. "Finally, the doctors said there was not much they could do. You can just take her home."



In recent months, as his wife's condition deteriorated, the retired taxi driver learnt to clear her phlegm with the help of a nasal tube and tend to her bed sores.

When The Sunday Times visited shortly before her death, Mr Lim was in the midst of cleaning and feeding her. "I change her every three hours to keep her clean and comfortable," he said, as he gently wiped her face with a moist towel.

When Madam Gan was alive, he slept fitfully, waking when she coughed. "I worry about her choking on the pipe," he said.

Local studies show about one in 10 caregivers in Singapore - about 21,000 people - is aged 74 or older.

A Home Nursing Foundation nurse visited monthly since early this year, after a referral by Tan Tock Seng Hospital, where Madam Gan was warded briefly.

Mr Lim has high blood pressure, and the caregiving routine was tough but he was unwilling to put his wife in a nursing home.

"No, cannot," he said tersely, when asked the question weeks before she died. "If she wants to go, I want her to go at home. Nicely."

In the end, Madam Gan was hospitalised for a few days before she died. "I am relieved she is at peace now," he said.

But his caregiving days are not over yet.

Fate dealt the family a cruel hand. A motorcycle accident in the early 1990s left Mr Lim's second son, who lives with him, partially paralysed. He works in the social service sector and uses a wheelchair. For the past eight years, Mr Lim, who does the housework, has helped his son, in his 40s, bathe, dress and empty his bowels with the help of suppositories nightly.

"When she was well, she used to be my son's main caregiver," he said of his wife. "She would cry at his condition but never complain."

These days, he wakes up at 5.30am to get his son ready for work. "It takes time as I am not as strong or as quick as I used to be."

When his son is working, Mr Lim catches up on housework and sleep. In the evenings, he cooks or buys a big meal for his son. "He only eats once a day as he tries not to go to the toilet when he is at work."

On getting a maid, he said: "You all ask me to get a maid. How can? Who's going to support me?"

His two daughters have low- paid jobs at a fast-food restaurant. His eldest son, who works overseas and has his own family, regularly sends him money. Mr Lim said: "He already helps us a lot. I cannot ask for more."

His blood pressure is high, and Mr Lim worries he might collapse from sheer exhaustion one day. "But, what to do? I don't have a choice," he said. "My younger son needs help. So I must carry on."





LIFE AFTER CAREGIVING
She lost mum and job within a month
By Radha Basu, The Sunday Times, 29 Sep 2013

 Just four months ago, Ms Joyce Soon, 54, put in 18-hour days, juggling a full-time job with caregiving duties.

Then, in a bolt from the blue, the corporate services executive in a multinational logistics firm was retrenched in June.

A month later, her mother Alice Wong - whom she lived with - lost her decade-long battle with dementia. She died in her sleep on July 2, aged 94.

Since then, Ms Soon has sent out dozens of job applications, visited job fairs and been for interviews. But she has had no luck so far.

"It's been a big, big double blow, with both anchors of my life being knocked off at the same time," says the youngest of five children. From having no time for herself for years, she suddenly has all the time in the world. "I really need to find a job."

The O-level diploma holder represents a small but growing number of mostly single, female caregivers who find it increasingly difficult to return to the job market after their loved one dies.

A recent study on informal caregiving here by the Duke-NUS Graduate Medical School found that one in four caregivers here - or potentially at least 50,000 people - have never been married.

Many have to give up jobs to look after loved ones, jeopardising their financial future. Some like Ms Soon get retrenched. And getting back to the job market is hard.

Ms Soon, who worked in the same firm for 15 years, says the company told her she was retrenched because of restructuring.

But she acknowledges that she would leave on the dot at 5.30pm, eager to be back at home taking care of her mum. "I did not want her staying with the maid all day."

In hindsight, she does not know if that caused her to lose her job. She put in a "good day's work", she says. "But I also know that many employers don't like to see employees leaving on time."

Ms Soon returned from Australia to live with her mother when her father died in 1989. "I did not want her to be lonely."

Her three surviving siblings - including a sister who lives in Melbourne - are all in their late 60s. They help financially and drop in when they can, but are getting on in years themselves.

As she watched her mother's heartbreaking journey into physical and cognitive decline, Ms Soon tried her best to keep her "safe, happy and comfortable".

At 7am every day, she would take Madam Wong, who used a wheelchair in her twilight years, for her daily walk in the East Coast Park or to markets and hawker centres in their Bedok neighbourhood.

Evenings were for mother- daughter bonding. Ms Soon would cook for Madam Wong, feed her and watch her favourite crime TV series CSI with her. Sometimes, she would play her favourite Frank Sinatra and Nat King Cole numbers on YouTube. On weekends, she would gather friends and family for a game of mahjong.

"Mum loved variety in her life. Staring at four walls of the house can make anyone depressed."

These days, Ms Soon is trying to ward off loneliness herself as she spends hours scouring the Internet and newspapers for jobs.

The big hurdles, she feels, are her last drawn pay - at $5,800 per month - and three decades' experience. Her previous job involved multitasking: she was in charge of purchasing, liaised with airlines and telcos, and oversaw office renovations and moves, among others. Many of these can be outsourced.

"Besides, who would hire a 50-something when they can get a 20-something at half the salary."

She stresses that she has told prospective employers that she is willing to take a pay cut. But they feel that she would leave the moment someone offered her higher pay.

"I just don't know how to convince them that's not true," she says. "It's very, very frustrating."









Give eldercare the same urgency as childcare
By Radha Basu, The Sunday Times, 29 Sep 2013

Madam Zauyah Omar, 57, was forced to quit her job at a chicken slaughterhouse to look after her husband Mohamed Hussin Ahmad, who has terminal lung cancer.

Initially, she tried going to work by locking him in alone at home. But he fell from his bed and fractured his hip. Unable to walk, he now needs constant care.

She then tried looking for a day-care centre for him, but was told that the one near her one-room flat in Marsiling closed before she finished work.

It would also not accept him because he could not walk, she said.

"So I have no choice but to quit my job," she added.

The couple, who are childless, are surviving on state aid.

Madam Zauyah clearly needs an eldercare support service, but was unable to access it. Her loss of livelihood will impact her financial future.

Singapore's first in-depth study on caregiving commissioned by the Ministry of Social and Family Development shows that fewer than 5per cent of caregivers made use of home and community-based eldercare services. Only 1.9per cent used adult day-care centres, another 3per cent used day rehabilitation centres, while another 4.5per cent used home nursing services.

According to the study, the majority of respondents said they did not use the services because they had no need for them. This explanation may not reflect the full picture.

While researching an in-depth special report on the plight of Singapore's 210,000 caregivers looking after the sick, disabled, or frail old folk at home, many interviewees told me that low overall capacity, costs and a mismatch between what is on offer and what people want could also explain why so few people are using eldercare services.

Let's talk about capacity first. There are about 3,000 places available at about 60 eldercare centres islandwide. This seems frightfully low, given that Singapore is among the fastest ageing societies in the world. There are already close to 250,000 people here aged 70 and above, up 55 per cent from a decade ago.

By comparison, there are about 280,000 children aged seven and below, a number which has stayed stable over the past decade, given that Singaporeans are having fewer babies.

Yet, there are 104,300 childcare and infant-care places available in more than 1,070 centres in Singapore currently, up 60 per cent from 65,500 just five years ago.

New centres and funds are being announced regularly. The latest, a $40 million infusion of state funds, was made public just last week. The number of childcare places and enrolment - not just islandwide but even in individual housing estates - is being closely tracked online.

Given Singapore's rapidly greying population, there is an urgent need to set up more eldercare services and to publicly track demand and supply.

The Health Ministry could not release enrolment numbers, waiting times and vacancies for home care and nursing home services. Day-care centres, it said, are running at 84 per cent capacity islandwide, though in some locations, the wait for a place can stretch to 50 days. Another 240 day-care places will be made available over the next six months. By 2020, there will be 5,500 more.

Unlike most centres now, these "integrated" centres will provide rehabilitation, socialisation, nursing and dementia care services under one roof.

But 2020 seems very far away. Indeed, caregivers interviewed claim that the wait for some services - such as those for dementia care - can stretch to nine months or more. In the absence of adequate support services, they are finding different ways to cope.

Some caregivers I met look after loved ones during the day and work at night. Others have quit their jobs. One has hired a moonlighting maid - which is illegal. Stress levels are high.

But merely ramping up capacity will not do. Demand must match supply - and centre timings at odds with caregivers' work schedules is not the only problem.

Caregivers say that eligibility criteria are too rigid and that most centres are unable to deal with older folk with multiple illnesses.

Ms M.G. Ang, 40, for instance, wrote in to say that a dementia centre turned away her 79-year-old father because he suffered not just from dementia but also from cancer. Ms Kathy Loh, 50, was told that she could send her mother to a day-care centre only if she was accompanied by a maid.

Costs, too, are a key issue. While subsidies have increased and income ceilings have been relaxed, with the full fees of some services stretching to $76 a day, some families may still find it tough to cough up co-payment amounts.

From past interviews, I sense that there seems to be the thinking that Singapore does not need to invest heavily in community or home-based eldercare infrastructure because of the easy availability of maids.

But we need a Plan B. While about half of families taking care of elderly or disabled folk at home are currently making use of maids, the arrangement may not be suitable for all. Attrition rates of maids are high. Three caregivers I spoke to claimed that their helper had abused their loved ones in their absence. In a fourth case, a maid complained to the police after a mentally ill person she was caring for tried to kiss her.

Finally, in ramping up eldercare services, the Government cannot go it alone. Community involvement is also needed. During a trip to study eldercare options in the United States, I was struck by the number of citizen-led and funded initiatives that were thriving there.

In one project, in Princeton, younger volunteers spent time visiting frail old folk being cared for at home. During emergencies, older folk call these teams of volunteer carers, who are happy to help, as they know that once they grow old, they can benefit from the service themselves.

"In this town, we like to solve our problems ourselves," the project's founder told me. He believed, he said, in the Power of One - that individuals too can pitch in to solve national challenges.

As Singapore braces itself for the silver surge, that's a message we should all heed for sure.


 






Malays less likely to hire caregivers
Study finds that more Chinese and Indians hire maids; Malays rely on a larger and stronger family network
By Janice Tai And Nur Asyiqin Mohamad Salleh, The Sunday Times, 17 Nov 2013

Malay families in Singapore are less likely to employ maids or turn to community services to care for their loved ones, compared to the Chinese and Indians.

This was one of the findings from a study funded by the National Council of Social Service to explore the caregiving efforts of the different ethnic groups.

It aims to find out if the various ethnic groups are getting the caregiving help they need and if cultural factors influence their approaches and decisions regarding caregiving.

Initiated by the Asian Women's Welfare Association Centre for Caregivers, the study, which was conducted over the past two years, polled 500 caregivers - 279 Chinese, 124 Malays, 85 Indians and 12 others - who look after relatives aged 60 and above.

Led by Assistant Professor Hong Song-Iee from the National University of Singapore's department of social work, the study found that only 10.5 per cent of Malays hire maids, compared to 31.5 per cent of Chinese and 23.5 per cent of Indians.

The use of community services such as day-care centres and nursing homes was low for all ethnic groups. The Chinese use them the most (0.43 per cent) and Malays the least (0.15 per cent).

Ms Anita Ho, assistant director of the centre and co-investigator of the study, said one reason Malays tend not to need such support services is that they can rely on a larger and stronger family network.

For example, the data shows that Malay and Indian elderly are more likely to be cared for by two caregivers within the family compared to the Chinese who tend to rely on one caregiver. A higher percentage of Malay and Indian caregivers also live together with the relatives they are caring for compared to their Chinese counterparts.

The Malay and Indian respondents had higher scores on filial piety and prioritising family ties than the Chinese. Another reason Malays do not hire a maid or use caregiving services as much as the others is the prohibitive cost of such services, said Ms Ho.

The survey found that cost consideration was the top reason cited by Malays for not hiring a maid.

When asked to identify gaps in existing services, Malay and Indian respondents picked lack of financial assistance and related information as the top bugbear. The Chinese cited a need for more awareness of the services available as their top concern.

Ms Ho said the findings will be useful for policymakers or social workers to explore how to reach out to people who need caregiving services but do not use them for various reasons.

Singapore, however, is not short of outstanding caregivers. In fact, 20 of them, who sacrificed their jobs and personal lives to assume the role at home, received awards yesterday from Senior Minister of State for Health Amy Khor at the 2013 Model Caregiver Awards.

One of them was 18-year-old Jennifer Chua, who had put her junior college studies on hold to help her mother, Madam Mala Palmanappam, nurse her late father through his battle with cancer.

Dr Khor said caregiving could bring families closer together, and that the Government had taken "concrete steps to enhance caregiver support".

For instance the Seniors' Mobility and Enabling Fund was expanded in July, widening the scope of subsidies to help ease financial burdens.

The elderly now receive funding for consumables such as catheters and diapers, as well as for a wider range of assistive devices, such as motorised wheelchairs. More than 2,000 households have received about $2 million in subsidies under the enhanced scheme.

The Government is also exploring ways to provide short-term respite for caregivers.

The Agency for Integrated Care rolled out a Nursing Home Respite Care pilot programme in May this year, with 15 nursing homes offering subsidised beds to help caregivers care for seniors for seven to 30 days a year.

So far, this has benefited some 70 clients.





A model caregiving family
By Janice Tai, The Sunday Times, 17 Nov 2013

Taking care of one relative is already a demanding task for most people, but Madam Nuraini Mohd Noor has to look after three special needs children who have been bedridden from birth.

Madam Nuraini, who has three children suffering from epilepsy and intellectual disability, is undaunted. The physical therapist is always seeking ways to improve their quality of life.

For years, the three children - a daughter and two sons aged seven, 18 and 19 respectively - could not eat solid food, speak or even sit and stand. So Madam Nuraini customised massages for them and, gradually, the children were able to move around and attend school.

She also came up with ways to communicate with them by using mirrors and sign language.

Yet she says she is not a "supermum". "It is only with my family's help that I manage to get by and stay strong," she acknowledges.

Her husband, parents and another daughter, Naqiyah, who has no disability, help her to care for the three special needs children.

Naqiyah, 16, who recently took her N-level exams, would help with housework as well as feed her siblings before doing her revision at night.

Her father, Mr Yusof Bin Noordin, makes breakfast for the children before leaving for work at 6am. He is a driver and the family of eight relies on his and his wife's combined monthly pay of $2,000 to get by.

Madam Nuraini's parents help with the cooking and fetch the children from their special needs schools and day-care centre.

"We did away with our last domestic helper two years ago as it was too costly and it's not easy to find someone with the patience to care for three special needs children," said Madam Nuraini, who is also a freelance beautician.

In recognition of their efforts, the family picked up the 2013 Model Caregiving Family Award given out by the Asian Women's Welfare Association Centre for Caregivers at a ceremony yesterday.

Madam Nuraini said the strong family support and the smiles on her children's faces help her persevere. "With others chipping in, it is not so stressful and lonely as I can turn to them for emotional support whenever I feel drained."



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