When her mother fell seriously ill in 2010, Ms Janet Koh Hui Kheng says she was initially "in denial" that her mum would need full-time care.
"I was 54 then. I didn't want to give up work," says Ms Koh, now 61.
Having worked as a secretary for more than 30 years, she was worried not only about her loss of income, but also that she would not be able to find another job at her age.
Eventually, she quit her job that same year to care full-time for her mother, Madam Ng Sook Cheng, because Madam Ng had done the same for her own mother, who had dementia.
"I was eight years old and I saw her combing my grandmother's hair and cooking for her. My mum always told me that we must love the elderly. Now it's her turn, I will not send her to a home. I will adapt, I will embrace her," says Ms Koh.
She adds that her mother, who has been living with her since 2000, previously mentioned that she was uncomfortable with the thought of being cared for by a domestic helper.
Plan and prepare as a safeguard
Experts say that planning for caregiving should ideally take place even before the need arises.
"Many people leave thinking about caregiving until something happens, such as a fall by an elderly family member. In such scenarios, there is less time to prepare and learn to be a caregiver," says Mr Kelvin Lim, chief of senior support and carer services (development division) at Agency for Integrated Care.
He likens this kind of preparation to buying insurance as a safeguard against future events.
"Similarly, it is helpful to have conversations early on with aged family members regarding their care preferences. Ask questions such as what they envision themselves doing in their senior years," he says.
"This is a way to plan for their practical as well as psycho-social support - for example, they might wish to be close to their grandchildren or not to live in a nursing home."
Ms Jasmine Wong, a senior social worker at Hua Mei Mobile Clinic, Hua Mei Centre for Successful Ageing at Tsao Foundation, says: "To know a person's care needs, it is necessary to seek the advice of his professional healthcare providers such as the doctor and nurse, or get a referral to a social worker or community care partner."
Financial and estate planning should also be considered, she says.
Those seeking information on navigating the caregiving landscape can access the Singapore Silver Pages (www.silverpages.sg) or call Singapore Silver Line on 1800-650-6060.
Ms Koh's three siblings are married and most of them have children, while she is single - another factor that prompted her decision, she says.
Her mother had told her siblings: "I want Janet to take care of me."
Later on, Madam Ng told Ms Koh she knew she would care for her well because of Ms Koh's patient and meticulous nature.
Madam Ng, a housewife and widow, had suffered a mini-stroke, whose symptoms are similar to a stroke. Her mobility was affected and she now uses a walking frame or a wheelchair. She also has benign paroxysmal positional vertigo, making her prone to dizziness, fainting and falls.
In 2014, Madam Ng, 83, was diagnosed with dementia.
Ms Koh's journey as her mother's full-time caregiver has been stressful and taxing. For instance, taking care of her mother is physically tiring when she has to transfer her from her bed and support her when she uses her walking frame.
The earliest challenges typically involve coming to terms with a loss of independence for both the caregiver and the care recipient.
Ms Jasmine Wong, a senior social worker at Hua Mei Mobile Clinic, Hua Mei Centre for Successful Ageing at Tsao Foundation, says: "It is a time of adjustment for both sides. Some care recipients may experience a loss in terms of activities of daily living, such as the inability to feed, bathe or dress themselves, which leads to a loss of independence and some level of dignity, especially at the initial stage when their personal hygiene is being taken care of by others."
Ms Jayne Chiara Leong, a senior social worker and counsellor at Singapore Cancer Society, says: "The tasks of a caregiver include providing physical, emotional, spiritual, financial or logistical support.... It is normal for first-time caregivers to feel overwhelmed, burdened, helpless or inadequate."
There is a wide range of resources available for caregiving by organisations such as government agencies, charities and volunteer welfare bodies. These include home help services, financial support schemes, meal deliveries and caregiver-training programmes for foreign domestic helpers.
Ms Koh has been attending courses and talks to learn about caregiving and dementia, and has chalked up more than 30 such workshops in the past four years.
Next week, she will attend a workshop at a hospital that deals with modifying the texture of food. Her mother can eat normally now, but if her condition declines, she may be able to eat only soft food, she says.
"In school, I was not as hardworking as I am now. I try and anticipate her needs," says Ms Koh, who also considers her mother's emotional needs.
Learning more about dementia has helped her "validate" her mother despite the challenges of the condition, which sees Madam Ng repeating remarks constantly as her short-term memory is poor.
Last year, when she had hallucinations linked to her dementia, which convinced her that her cupboard was covered with ants, Ms Koh did not dismiss her claims or hurt her feelings, but simply turned on the light to show her mother there were no ants.
Some of her siblings have provided monetary support and she receives social assistance funding through programmes such as the Government's ComCare scheme. After Ms Koh left her job, she and Madam Ng have had to scale back on their household expenses to living on less than $1,000 a month.
Although she rarely has time to herself, she has no regrets: "Caregiving can be very rewarding. I'm learning new skills and starting a relationship with her - she seems like a new person - all over again."
Ms Leong says self-care strategies such as taking time to relax and exercise are important as caregivers sometimes focus on their loved ones to the extent of neglecting their own health and well-being.
In this respect, Ms Koh joins an exercise group twice a week and relaxes by surfing the Internet when Madam Ng is asleep. Many of her friends are also caregivers, who, like her, have little time to socialise.
Advocates say society can do its part to ease the burden on caregivers.
Ms Eleanor Yap, founder and director of Ageless, an organisation that advocates for seniors, says: "I strongly believe in community support. With an ageing population and with people living longer, many of us will be in caregiving roles and society needs to step up and empathise."
Ms Yap, who is also the editor of Ageless Online, a free Web portal for seniors, says family members can share in caregiving as it can be tiring for one person to shoulder the task. Neighbours and friends can spend, for example, an hour with the care recipient to give the caregiver respite. And employers can adopt flexible work arrangements for employees who are caregivers.
She adds that serial caregivers who care for different loved ones over an extended period may face issues such as not being able to prepare adequately for their own retirement or finding it tough to return to the workforce.
In the case of Madam Liaw Lay Kian, 55, being a full-time caregiver for two of her loved ones led to her finding a career in late middle age: nursing at a hospice.
She was a housewife who became a caregiver for her father-in-law for 16 years. Then her husband was diagnosed with colorectal cancer in 2008. She cared for him too, until he died in 2009, within 10 months of his diagnosis, at age 55.
Her father-in-law, who was bedridden from a stroke he suffered in the 1990s, died at age 91 in March 2012.
Later that year, at age 50, Madam Liaw decided to train to become a nurse, first at the Institute for Technical Education, then at Ngee Ann Polytechnic. She recently completed her training and is working as an assistant nurse at Dover Park Hospice.
She explains her desire to work in a hospice: "Having been a caregiver before, I can help patients feel valued and loved."
Madam Liaw was motivated by love when she first started caregiving. In 1996, her mother-in-law, who had been caring for her father-in-law, died from a heart condition.
"I knew that someone had to step up and take over. We don't have to have everyone (in the family) change their lives," she recalls, adding that her decision to become the caregiver for her father-in-law, together with her late husband, was made "out of (her) heart".
Her husband, who was a teacher with three siblings, helped her care for her father-in-law until his own illness.
Caregiving for her father-in-law was a "great adjustment". He slept in their bedroom so that she could tend to him at night.
She had a phobia of saliva and faeces. When the first of her two daughters, now in their 20s, was born, changing diapers was challenging for her. Similarly, she had to overcome the fear of the smell of faeces when tending to her father-in-law's hygiene needs.
"Nobody asks to be in such a situation. I wanted to let my father- in-law see that it was not a burden to care for him," she says. Her own father died of a heart attack in 1989 and her mother, 76, is in good health.
Being a caregiver for many years, she often missed her daughters' school performances and missed out on taking them to the playground and doing arts and crafts.
Her late husband and her daughters sometimes went on outings without her as she had to stay home with her father-in-law.
In recent years, however, her daughters told her that they appreciated her even though she could not spend as much time with them as she would have liked.
"I gave up a lot as a mother, but as a caregiver, I was teaching my daughters different kinds of values that cannot be taught in school," she says.
A version of this article appeared in the print edition of The Sunday Times on April 09, 2017, with the headline 'Caregivers need care too'. Print Edition | Subscribe
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