“I feel like killing him. I really cannot take it already.”
These were the words Micki Sim’s mother uttered to her when she was at her wits’ end after several months of struggling to care for their 90-year-old family friend who suffers from dementia.
42-year-old Sim, who is a senior social worker at Montfort Care – which runs a network of social service programmes and services – was stunned by her mother’s confession.
“I’m a social worker myself, and having my own family struggling with the care for [a] person with dementia…wa…it’s really… I feel very sad.”
From neighbour to part of the family
Lim, the family friend, isn’t related to Sim or her mother by blood but the make-shift family of three is a close-knitted one.
Lim used to be their neighbour, and as Sim grew up in a single-parent family in a rental flat, the older man became a guardian of sorts. Sim even called him her “uncle”.
Since Sim was 14 years old, Lim would chip in to pay for her education and help out around the household. Ultimately, it came to a point where the trio simply decided to “come together as a family”, as they moved to another flat.
“It couldn’t be that he has dementia”
Dementia isn’t always a sudden illness that raps on your door one day.
Its onset can sometimes be more insidious, and it had started to creep up on Lim in 2018. The elderly man was still healthy, working, and able to live independently despite his age.
Sim and her mother only realised that something was amiss when Lim would repeatedly ask the same questions.
For example, when Sim had left the house, Lim would ask her mother if she had returned home, only to forget her answer and ask the exact same question a while later.
A visit to the doctor confirmed that Lim was indeed starting to suffer from dementia, but Sim and her mother initially remained disbelieving despite the doctor’s diagnosis.
“We just say, cannot be, must be the doctor say wrongly,” Sim recalled about their doubtful reactions.
“We watch a lot of shows [with characters with dementia], which emphasises so much on memory loss, but he can still remember so many things, so to us it couldn’t be that he has dementia.”
Other symptoms of dementia
What Sim and her mother were unaware of in the beginning were the varied and lesser-known dimensions to dementia.
Aside from memory loss, people with dementia experience a loss of orientation, such as forgetting where they are, or misremembering places which used to be familiar to them.
A distinct change in personality can also occur. This was particularly drastic for Lim who gradually grew increasingly withdrawn, despite being a jovial and talkative man.
These were the quieter signs that Lim was slowly slipping under the grasp of dementia.
The elderly man also started to become incontinent, and would lose control of his bowels before making it to the toilet.
However, he refused to wear a diaper, and the toilet and kitchen would always be soiled. Additionally, Lim would protest about taking a shower, or eating three meals a day, forcing Sim’s mother to continuously coax him to go about his day-to-day activities.
The stress of having to care for and manage Lim took a toll on Sim’s mother, and the latter would cry to Sim about her struggles.
That was the turning point for Sim, and she made the decision to quit her volunteering work to be more involved in Lim’s care.
Meanwhile, Sim’s mother also quit her job as a cook at a childcare centre in order to be able to care for Lim full-time.
Making hard decisions
Despite the pair dedicating more time to care for Lim, the work of the caregivers does not get easier.
Convincing Lim to wear adult diapers to manage his incontinence while maintaining Lim’s dignity was an issue Sim struggled with greatly.
“Initially we still continue to let [my] uncle dirty the kitchen and the toilets, as it is still manageable. It carried on for quite a while to the point when my mother really said ‘Cannot, I cannot already.’ It’s between my mother’s welfare and psychological well being, versus my uncle’s dignity.”
Sim got choked up when recounting the experience, as she empathised with what Lim had to go through emotionally.
“Just imagine for the past six, seven decades, you go [to the] toilet on your own, and you could dress yourself, help yourself [in] the toilet, things like that, to the point when you need to wear diapers, you need to lie down on the bed, and then people undress you. It’s very vulnerable [for the person with dementia].”
Sim’s mother was similarly reluctant to put Lim in diapers despite the mess created at home, and Sim had a “long battle” negotiating with and convincing the two seniors to understand the safety and hygiene risks that come with having urine and faeces on the floor.
The diapers, Sim explained, were merely a different form of support for both the caregiver and the person living with dementia.
180-degree change in personality
Caring for people with dementia doesn’t only entail the physical toil like helping to shower and dress the patient. Often, the changes experienced and demonstrated by the person diagnosed with dementia can take an emotional toll on caregivers and those around them as well.
For Sim, seeing Lim’s condition gradually deteriorate and a 180-degree change in his personality was one of the toughest parts of her journey as a caregiver.
Lim used to be extremely rational and wise, and he was able to dish out advice to Sim and her mother.
After suffering from dementia, Lim will occasionally take false ideas as facts and experience an alternate version of reality.
One instance was when Lim was warded in the hospital, and believed with much insistence that one of the nurses was in a relationship with a patient in the same ward, despite there being no evidence to indicate so.
Lim however, refused to let go of this false reality his mind had created, and eventually Sim and her mother learnt to stop correcting him, as the resulting arguments would cause him to become even more withdrawn.
Having a support system is key
Having a strong social support system – which comprises her relatives, friends and colleagues – has greatly helped Sim cope with the physical, psychological and emotional effects of being a caregiver.
She cited how thankful she was to her supervisors and colleagues at work, who would always approve her last-minute leave and cover her duties during emergencies involving Lim, such as having to rush him to the hospital.
Sim herself has been a pillar of support for her mother.
Her mere presence has helped her mother maintain her calm and composure when dealing with Lim’s occasional bouts of stubbornness.
Simply giving her mother the space and opportunity to be open about her struggles has helped immensely as well.
“I think without my aunties, uncles, cousins, and myself, or [our] neighbours even, it will be more challenging for her if she doesn't talk it out,” Sim said.
Caring for Lim together has also brought the mother and daughter pair closer. Their conversations helped her mother understand Sim’s values towards caregiving, while Sim recognised her mother’s resilience when caring for Lim.
A change in perspective
One might be surprised to find out that Sim wanted nothing to do with dementia cases at the start of her eldercare career in 2018 as a social worker.
“[I told my boss at the start], you can ask me to do anything, but not take on cases with person[s] with dementia,” Sim chuckled.
Her main concern was the huge amount of responsibility when it came to caring for persons living with dementia, especially in the event that they went missing.
Things changed when a case involving an elderly couple landed in her lap.
The elderly couple, both of whom suffered from dementia, were initially wary of social workers, and it took some time for Sim to befriend them and gain their trust.
During this period, Sim would accompany the couple daily to the polyclinic for two weeks to treat an injury the elderly woman had sustained on her foot.
After spending several months visiting the couple and caring for them, Sim was subsequently transferred to another department.
It was a year later when she met the couple again. Fully expecting them to have forgotten about her, especially considering they had dementia, Sim was shocked when they greeted her enthusiastically.
“I thought, aiya, persons with dementia surely forget about me. But there was one time when I went back [for an outing], then from very far away from the carpark, they shouted my name ‘Ah Qi!!’. At that moment I cried!”
Meeting this couple changed Sim’s outlook and perspective on persons living with dementia, inspiring her to continue to work on similar cases.
Important to seek help
Having been at Montfort Care for nearly 10 years, Sim cites the learning points and experiences from work as being invaluable during her caregiver journey.
She adds that if she wasn’t a social worker, she might not have valued the dignity and psychological needs of Lim as much as she does now.
Sim also understands that caring for someone with dementia does not have to be, and should ideally not be, a solo job.
“As a social worker myself I’m also reaching out for help from my informal support and formal support [system].”
One of the mottos Sim wholeheartedly believes in is that “it takes a village to raise a child, and also to care for an elderly person with dementia”.
Sim strongly advises caregivers to seek help if necessary from social services such as Montfort Care, in order to prepare for and cope with the responsibility of caring for someone with dementia and to understand the condition better.
More about Montfort Care
Montfort Care has just launched Heart to Love, a campaign to highlight a caregiver’s journey and encourage conversations around the experience of caring for those living with dementia.
From the hidden long-term costs of caregiving, to the joys of reconnecting with a loved one, the stories seek to rally support for dementia caregivers.
Caregivers who need more support, information or advice may reach out to Montfort Care, which runs a network of eldercare services and programmes under GoodLife!, as well as Family Service Centres (FSC):
- GoodLife! centres
- Marine Parade Family Service Centre
- @27 Family Service Centre
- Kreta Ayer Family Services
You can find more information about Montfort Care here.
Other resources and forms of support for persons living with dementia and their caregivers are available via Dementia Singapore and Agency of Integrated Care (AIC).
This sponsored article by Montfort Care made the author understand the struggles caregivers go through.
Top photo courtesy of Micki Sim
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