Who cares for the caregivers? More help should be given to them, say experts

Ms Kris Foo, seen here with her mother, suffered from caregiver burnout in 2015. PHOTO: COURTESY OF KRIS FOO

Having been the main caregiver to her 87-year-old mother who has dementia for eight years, Ms Kris Foo's constant companion has been emotional, mental and financial stress.

The self-employed branding designer suffered from caregiver burnout in 2015, after facing daily bouts of tantrums that stemmed from her mother's depression and anxiety.

"I woke up one day and I just started crying. But looking back now, there were telltale signs - I was getting increasingly irritable and lost my focus on everything else besides caregiving," said Ms Foo, 53, who is single and has an elder sister. Her mother has been divorced for 40 years.

"My business suffered as a result of this, and I had to start drawing on my mother's savings to cover her medical and household expenses," she added.

Ms Foo also grappled with negative feelings such as the loss of self-identity, suicidal thoughts and the harrowing reality that dementia patients will never "get better", as their condition worsens over time.

In 2018, Ms Foo began sending her mother to daycare - which gave her five extra hours each day to catch up on her work and sleep.

Seeing a counsellor also helped her to better identify and cope with stress, though she now finds herself grappling with the larger issue of self-care.

For instance, uncertainty over her future and retirement plans has weighed on her.

During a visit to a geriatrician in July, she was told that it was time to "care for the caregiver", as the doctor could tell she was heading towards another burnout.

Applications were made to send her mum to a nursing home and they are awaiting the outcome.

Although Ms Foo knew that such a decision would be crucial for her mental well-being, it is one that she made while ridden with guilt.

"There's always that sense of abandonment tied to nursing homes. It has not been easy warming her up to the idea of moving to some place else that isn't her own home, and for her to understand that I can't look after her by myself any more," she said.

While Ms Foo yearns to restart her own life, the guilt is not easy to deal with.

"The shift in reality and embracing a lifestyle of not living with my mother will be a huge adjustment for me, and counselling and social support will be important as I make these transitions in life," she added.

Caregiver guilt is a familiar feeling for many, as the deeply entrenched values of filial piety and duty often come at the expense of self-care, said experts here.

Dr Annabelle Chow, principal clinical psychologist at Annabelle Psychology, noted that as society's view of familial caregivers is centred on duty and obligation, those who need help are worried of being dismissed or shunned.

In addition, many caregivers tend to under-report feelings of stress because of the guilt that they face.

"Caregivers are often used to a constant routine of caring, and when they are not, they feel guilty for being away, and that they are not doing their job well or fulfilling their duty.

"This worsens if they decide to take time off to recuperate, where they may feel 'selfish' for doing so," she added.

Very few caregivers seek help for themselves at her clinic, Dr Chow noted. Rather, they often accompany those they are caring for, and would confide their difficulties with the psychologist in passing during a consultation.

Social entrepreneur and former Nominated Member of Parliament (NMP) Anthea Ong said it is common for many caregivers to de-prioritise their own emotional needs out of guilt.

"Some think that it is their responsibility as a family member, and that asking for support is too difficult.

"But it is not mutually exclusive to be filial and still look after our own well-being, so caregiver education is paramount in making sense of these ideas and feelings," she noted.

Assistance and resources for caregivers could be made available and more visible at all general practitioner and other clinics, along with caregiver support offices at polyclinics, suggested Ms Ong.

Peer support training and caregiving classes could also be held at community centres, she added.

The Ministry of Social and Family Development (MSF) said SG Enable, a disability service and support organisation, has worked with social service agencies and the community to organise peer-to-peer mentor training for caregivers of persons with disabilities.

According to five agencies and support groups which The Straits Times spoke to, caregiving stress has been on the rise during the Covid-19 pandemic, a result of work-from-home arrangements, a lack of caregiving reprieve, and financial stress from reduced incomes and loss of jobs.

Existing help that caregivers can tap includes an annual $200 Caregivers Training Grant administered by the Agency for Integrated Care (AIC) to offset the cost of enrolling for courses.

Such courses could help caregivers build their capabilities and reduce the level of stress that they face, agencies said.

Caregivers of disabled persons may also be eligible for levy concessions if they wish to hire a foreign domestic worker (FDW), and a Home Caregiving Grant, a $200 monthly cash payout to defray the costs of caregiving.

The grant can also be used for hiring a FDW, said the MSF.

A survey by the Association of Women for Action and Research (Aware) last year showed that caregivers of elderly patients who employ FDWs spent an average of almost $1,300 monthly, whereas the monthly expenses without an FDW were around $380, with the difference likely due to greater caregiving needs.

However, Aware noted that FDWs themselves suffer stress and burnout, due to factors such as overwork and inadequate training for eldercare jobs.

Agreeing, Ms Foo noted that some of her FDWs had quit as they felt that they lacked training and were not equipped to provide eldercare.

The $200 Home Caregiving Grant also covers just a fraction of expenses, and does not apply to medical expenses for care recipients, she added.

Respite care services should also be more affordable and accessible, she said. Ms Foo considered night respite care for her mum, who regularly wakes up six to eight times a night, but the cost of $100 to $150 each night is prohibitive in the long term.

One way to improve affordability would be to allow payment for such services through Medisave or Medifund, she said.

A Caregiver Support Grant that provides additional financial aid from the Government would be helpful, said Ms Shailey Hingorani, Aware's head of research and advocacy.

Ms Ong agreed and called for employers to offer more flexible work arrangements and support programmes centred on the well-being of staff who are caregivers.

But more pressing is the need for a societal shift towards valuing the work of caregivers "as no less essential" than that provided by healthcare workers and other front liners.

"More visibility, appreciation and recognition should be given to them for the critical role that they play in society," she added.

  • Caregiver burnout and how to deal with stress

  • Caregiver burnout refers to a point where a caregiver reaches his or her threshold, leading to physical, emotional and mental exhaustion.

    According to Dr Annabelle Chow, principal clinical psychologist at Annabelle Psychology, signs of burnout include the lack of energy even with sufficient rest, having trouble relaxing, insomnia or hypersomnia, and diminished interest in activities that one used to enjoy.

    These signs persist nearly every day for two weeks or more.

    Those experiencing burnout tend to be more irritable and are susceptible to developing a mental health condition.

    To take care of one's mental health, Dr Chow has the following tips:

    1 Accept that everyone has limits to the stress he or she can take, and give yourself the permission to rest, feel and cry.

    2 Ask for help when you need it. This is not just limited to respite care, but can be for small things like getting help to buy groceries or taking time off to go for a walk. Small "wins" are better than holding out for a "big break".

    3 Join a caregiver support group. Having a group of caregiving friends to share stories and tips with could make a lot of difference.

    4 Try mindfulness exercises. Mindfulness is a form of meditation which focuses on being aware of what you are sensing and feeling in the moment, without judging yourself.

    There are plenty of free exercises online, and these practices take only a few minutes each day.

    5 Make some time for yourself. Recall the things you enjoyed doing to relax, and try to engage in these activities. If you still feel burnt out after taking time off, you should seek help from a mental health professional.

Join ST's Telegram channel and get the latest breaking news delivered to you.