Singapore caregivers share taxing demands of caring for older kin

SINGAPORE - Caregiving is no easy task, especially in a country like Singapore, where the population is ageing, the cost of living is rising, and locals are often on the look out for better work-life balance overall.

According to a study conducted by Milieu Insight and Caregivers Alliance Limited (CAL) last year, 51 per cent of primary caregivers reported feeling stressed ‘often or all the time’ compared to 40 per cent of the general population.

What are the unspoken stressed and trials caregivers face in Singapore?

Speaking with Yahoo Southeast Asia, two caregivers shared the struggles and stresses they've gone through while caring for their elders, and how they managed to overcome these challenges.

The trials of caring for a mother with dementia

For Augustine Ashley, caring for his 67-year-old mother, Regina, who suffers from mild dementia, means "repeating himself many times over".

The entrepreneur first noticed his mother's memory loss and hallucinations in early 2020.

Regina would bombard him with questions like "where am I" and "what time am I going out?" despite having no plans to leave the house.

The frustration was immense as Augustine struggled to connect her condition with dementia.

"It was extremely frustrating, because I didn't understand or associate her conditions with dementia," he said.

Augustine initially attributed his mother's memory loss to the side effects from her breast cancer medications.

However, a pivotal moment came in April when he returned home after work to find his mother missing.

Assuming she had gone for a walk, he took no action, and only dropped her missed calls after she had disappeared for two hours.

At 9.30pm that night, Augustine eventually received a call from the National University Hospital (NUH), informing him that his mother had been admitted in the hospital, and diagnosed with dementia.

Within six months, Regina's mental capacity dwindled, and she faced difficulties reading, writing. She was often delirious and had hallucinations.

"She would be on the sofa in the living room saying things like 'There's a man sitting down next to me' and 'There's a lady standing at the door'," Augustine said.

Augustine found himself in a position of constant vigilance as he had to be on "constant watch", assisting Regina with daily tasks like walking, eating, and using the bathroom.

"With someone with dementia, it's almost as if they need help 24/7. It became too challenging for her to go to the toilet or shower herself, and I had to step in," he said.

Overwhelmed and unable to work, Augustine took the difficult step of admitting her to a nursing home last August after another incident.

It was when his mother got stuck in the home toilet that it finally sank in that his mother "was not the same".

He knew then it was beyond him to be the sole caregiver.

In prioritising the needs of the situation, Augustine also neglected his physical health.

Coping with the challenges of caregiving

Augustine coped with the stresses of caregiving by giving himself time and space away from this mother to regulate his emotions.

"I will ask my brother to take care of her for one afternoon, while I go out and have some time to myself with my friends," he said.

Through the process, he learnt more about dementia and realised it was "not helpful" for him to be angry at his mother for not being able to control herself. He even played along with her hallucinations as recommended by her doctor.

Augustine viewed caregiving as an opportunity for bonding, taking his mother out for walks at the park to stimulate her mind and body, all while trying to emotionally support her during her journey.

"I am trying to reconnect with her on an emotional level and show her support. She is always worried that she'll be alone and abandoned, because the nursing home is not a familiar environment to her,' he said.

Caring for an immobile grandmother

In the case of 29-year-old Chen Yiru, her emotional stress stemmed from being the primary caregiver and decision-maker for her immobile grandmother.

Yiru's grandmother's health deteriorated to the point where even slight movements caused her immense pain, triggered panic attacks, and needed an oxygen machine to help with her breathing.

Yiru's responsibilities escalated to injecting medication to slow her grandmother's heartbeat, and stabilise her condition. Additionally, she had to wet her grandmother's mouth with water every thirty minutes.

"It's not easy to see someone close to you have their health deteriorate, lose her consciousness, and not be able to decide things for herself," she said.

The emotional toll came not just from the physical tasks but also from the difficult decisions.

While the medicine was helpful in putting out her grandmother's pain, it would have her fall asleep for most of the day. On the other hand, she would remain awake but uncomfortable without it.

Her grandmother would refuse to take her medicine at times, and would even manipulate her helper to lie about taking medication. If the helper were to refuse, she would face the wrath of her grandmother.

Moreover, digestive issues due to old age, and nightmares that would wake up her grandmother in the middle of the night shouting, added to the complexity of care, affecting Yiru's own sleep.

Family politics also further compounded the stress, said Yiru, who found navigating power dynamics within the family to "quite a difficult task".

The effects of caregiving

The emotional demands of caregiving took a toll on her social life, leaving her with little time for herself and strained relationships with friends.

If she had to head out, even for a short while, she would rush back home the moment her grandmother reported any pain.

On why she consciously isolated herself from friends, Yiru said she "didn't know how to tell them what was going on" and felt "constricted".

"Even when the hospice provided a counsellor, I didn't think anyone could relate at that point of time," she added.

Yiru said she got through the difficult season by maintaining her sense of honour in caring for her sickly grandmother. Her family and helper were her pillar of support, and helped in her caretaking decisions.

Yiru's grandmother passed away in February this year, at the age of 92.

How caregivers can be better supported

Both Augustine and Yiru stressed the need for more proactive outreach to caregivers.

While hospitals provide caregivers with information through consultations and leaflets, as well as referrals to relevant associations such as Dementia Singapore, the bulk of the work is still left on the caregiver.

In many cases, caregivers are not given the luxury of time to process and manage the situation, and may have limited contacts to ask for help.

With Yiru working in a family-run maid agency, and Augustine running his own business, both caregivers acknowledged they were lucky to have had the job flexibility to care for their ageing family members.

"I think there needs to be outreach to caregivers, instead of caregivers reaching out. Caregivers really have so much on their plate," said Augustine.

"I had hoped that someone else would reach out to me, and give me the support I needed," he added, saying he had "no capacity" to reach out to others for support, as his mother was his first priority.

Yiru also shared similar sentiments, saying that it was important for hospitals to reach out to caregivers and "educate them on the various care options available, and share private care contacts".

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