Hidden Heroes: Tales from Caregivers (by Social Space)

A four-part series on caregiving, featuring Christine and Nadia, two caregivers who completed CAL’s C2C programme. Reproduced with permission from SMU's Social Space magazine. View the original series here: https://socialspacemag.org/hidden-heroes-tales-from-caregivers-part-1



About the Author


Jaya Myler is a non-profit manager and marketing and communications specialist. She has worked with international NGOs and managed corporate and consumer brands, and has extensive experience with non-profits focused on education, the environment, providing access to clean water and sanitation. Jaya is passionate about the power of collaboration to drive innovation and achieve impact. She has also volunteered extensively with charities in the areas of housing, education and multi-sector partnerships. Jaya, an Australian, has been living and working in Asia for the past eight years, and has called Singapore home for nearly six. Connect with her on LinkedIn.

Part 1


Caregiving is a role with no job description or pay, yet it comes at a great cost to the caregivers themselves. These individuals devote much of their time and energy to see to the needs of loved ones with physical or mental health conditions, and this process can take a toll on their own physical, financial, emotional and psychological well-being. Most caregivers have been thrust into the role due to circumstances beyond their control, are not trained or sufficiently equipped for it, and they usually balance caregiving with other responsibilities such as full-time jobs or studies.

However, the work of these “hidden heroes” often goes entirely unnoticed by wider society, causing them to feel invisible and underappreciated.


Did you know that one in seven Singaporeans are affected by mental health issues in their lifetime? If we assumed that one caregiver looked after every person with a mental illness, there are an estimated half a million caregivers in the country. According to my interview with Caregivers Alliance Limited (CAL), a non-profit that provides support and training to caregivers of persons with mental health issues (PMHIs) and dementia, most caregivers are parents, children or siblings of people with mental health issues or dementia. They are predominantly female and most likely to be a parent. The majority fall within the 41 to 70 age range, followed by those between 21 and 40.


Through Caregivers Alliance, I connected with Nadia and Christine, brave and loving ladies who have been looking after a sibling with a mental illness since a very young age.


Here are their stories.

Christine


“When my older brother isn’t doing well, he has suicidal thoughts. On such days, we lock the balcony doors,” says Christine, a 22-year-old undergraduate. “The locked balcony doors are a tell-tale sign to the rest of the family that someone needs to be home with him. If my parents need to go out and I don’t have classes that day, I’ll stay home. Likewise, if I need to step out, I’ll ask my parents to come home.” Christine, the middle child, also has a younger brother, and the family operates like a tag team when it comes to leaving the house.


Her older brother was first hospitalised for erratic behaviour and diagnosed with bipolar disorder when she was 14, and he 16. Today, his condition is a lot more stable and he only relapsed once in 2019 when in the past he would relapse around four or five times a year.


Although her mother assumes most of the caregiving and Christine is a secondary caregiver, it is still emotionally taxing on her. “Looking after someone who does not have a very usual way of understanding things is no simple task,” she elaborates. “It’s not a matter of reassuring them with words like, ‘Oh, you’ll be fine,’ and then they will be fine. Caregiving takes up a lot of emotional energy.”


On typical days, Christine goes to school or hangs out with friends, but she is always on standby if her family needs her. “My older brother’s mostly home alone and without friends, so my mum sometimes asks me to return earlier to spend time with him. I can understand why. In terms of ‘peers’, he only has my younger brother and me.”


Nadia


“When I was a child I didn’t understand why my sister was always angry at me,” shares 36-year-old Nadia, who is the youngest of her four siblings (two boys and two girls). She helps look after her older sister (third among the siblings) who suffers from borderline personality disorder.


Nadia recalls one difficult moment from their early childhood, years before her sister was officially diagnosed: “My earliest memory is being 4 years old and physically abused by my sister. Because I was so young, I don’t know what the real story was. But I have a clear memory of my father lifting up my T-shirt, seeing the bruises on my back and crying. Back then, I didn’t realise how bad the situation was [with my sister]. All I said to him was, ‘Please don’t tell kaka (older sister), because she said if I told you she would beat me again.'”


However, Nadia considers herself fortunate. For most of her childhood leading into her teenage years, her parents protected her from the brunt of her sister’s condition, and she even grew used to her home environment. “I always felt like I had a relatively normal life, except for having a problematic sister at home,” she describes. “It was normal to have the cops come as a result of screaming matches and stuff thrown.”


It was in fact Nadia’s parents who could have benefitted from more support. As her sister went in and out of the Institute of Mental Health (IMH) for treatment, they were unaware of any other resources for help. Further, her mum and dad believed mental illness was something that was not to be spoken about openly or acknowledged. “There was a lot of denial, a lot of shame,” says Nadia.


She was 21 when her father passed away suddenly, and his death devastated the family, especially her mother. With her grief-stricken mum struggling and her two brothers not being very involved, Nadia stepped into the role of her sister’s main caregiver and took the lead on her treatments. “Before [becoming the main caregiver] I hadn’t realised the massiveness of my sister’s situation, and all it entailed. That was something my parents had been sheltering me from all this while.”


From that point, having to take care of both her mother and sister financially, Nadia had to make some firm but important decisions. When her sister was younger, their mum had been reluctant to let her take medication because she believed the side effects were not good and did not like seeing her drowsy and sleepy all the time. However, once their father passed, Nadia insisted that her sister start going to therapy and taking her medication regularly.


Meanwhile, her sister’s violence continued for years. “I had to be the one to press charges and get a PPO [personal protection order] when she threw a knife at me,” she describes. The PPO turned out to be necessary, as her sister soon relapsed and Nadia had to activate the PPO after another violent incident. However, due to her sister’s long history and situation, instead of prison, she was placed in a permanent care facility, where she remains a resident today.


“My sister is now in a structured environment with programmes to follow. She takes her medication regularly and there are doctors and counsellors who constantly check in on her,” says Nadia, who is glad that her sibling is now thriving in a place where “the right people are taking care of her and giving her the space to express herself”.


But this reprieve was short-lived. Last October, her mother had a stroke, which affected her memory, mobility and speech. As a result, Nadia has once again found herself in the shoes of a main caregiver. “After the situation with my sister had stabilised, I thought, Wow, I’ll finally get to enjoy a normal life now,” she says wistfully. “But then this has happened.”


Part 2


The emotional and psychological toll that caregiving places on caregivers cannot be overstated.


In Christine's case, trying to communicate with her brother is a "draining" process because she's unable to fully relate to his struggles. "Most of the time, I don't know what to say when he gets upset," she describes. "I recognise that he has a mental health condition and that to him, what he's experiencing is a very real thing. However, not knowing exactly where he's coming from, I can't find right words to reassure him."

Christine shares her experiences with other caregivers and members of the public.


Nadia, on the other hand, has struggled with immense guilt for many years: “I used to feel guilty about being 'the normal one' between my sister and I. These feelings intensified whenever my sister asked my mother questions such as, 'Why does she get to be normal and not me?' But I eventually realised that none of this is my fault," she says. After this mindset shift, Nadia no longer carries the guilt of "being normal", and even has advice for caregivers still grappling with this issue. "You shouldn’t have to feel guilty for wanting to socialise with your friends, for having ambitions, for wanting a career, for having a job that allows you to travel and go to parties. In the past, I would sit at nice restaurants and feel guilty, but in hindsight I shouldn't have been. I wasn’t doing anything wrong.”


Nadia tells her story to encourage other caregivers and members of the public.


The caregiver's world is also vastly different from the world as most others view and experience it.


While many people look forward to the holiday season because they can take some time off or go on a relaxing vacation, for Christine and Nadia, the holidays are one of the more challenging times.


“My brother has a fear of going out. In addition to bipolar disorder, he has social anxiety, so for many years, we'd had to cancel overseas family trips at the last minute because he would not want to go,” Christina says. “But if he did come along, he would be very anxious throughout, and it might trigger a relapse when we got back.”


In Nadia's case, holiday get-togethers with the extended family are stressful for her and her parents. The family celebrates both Eid and Christmas, and at these gatherings, some relatives are quick to pass insensitive comments.


“They often give unsolicited 'advice' like, 'You just need to be a bit more disciplined with your sister' or ‘Pray, you’re not praying enough’." Even if well-intentioned, Nadia explains that such remarks do not sit well with her because they imply that her mother did something wrong in the past and is being punished with her sister.


There's also the issue of cost. In instances where the family member being cared for requires a high level of attention, the primary caregiver is usually unable to work. As a result, this role can quickly become an expensive one.


A 2019 study by the Association of Women for Action and Research (AWARE) found that caregivers of their ageing family members, including those with dementia, lose an average of 63 per cent of their income, in addition to CPF.

This is a common situation, according to Caregivers Alliance. Many caregivers in their network are not employed due to the state of their loved ones. Some even require financial assistance to pay for their family member's medical expenses and to keep up with monthly expenditures.


Yet despite the internal struggles caregivers face (emotionally or financially), their bigger obstacle comes externally.

The significant societal stigma surrounding mental illness is what discourages most caregivers from speaking openly about their experiences and seeking the help and support they crave.


Eliminating this stigma is therefore an important aim for Caregivers Alliance. “We hope to encourage a growing acceptance and embracing of PMHIs (persons with mental health issues) as equal and valuable members of society,” says Veena, a counsellor at CAL. “Through education and advocacy, we urge everyone to be more empathetic and understanding towards PMHIs as fellow human beings.”


While Christine and Nadia have observed increased discourse around mental health (for instance, the UK has the Heads Together campaign, and Singapore has Beyond the Label), both ladies concur that more needs to be done in this space to ensure the topic shares an equal footing with other health issues.


However, Christine wonders, is this shift mainly taking place among the younger generation? She points out that while many millennial-fronted YouTube channels and Instagram accounts champion mental health awareness and advocate against the associated stigma, the attitudes of the older generations are less visible. This troubles her, because she believes the key decision-makers in the system are likely those within that latter age demographic.


The National Council of Social Service’s (NCSS) study on Public Attitudes towards Persons with Mental Health Conditions found that the Singaporeans surveyed have many misconceptions about persons with mental health conditions—and that fear, a lack of understanding and stereotypes contribute to deep-seated stigma.


“People with mental health issues are vulnerable and need a lot of encouragement and support rather than discrimination and stigma,” Christine adds. “The change I hope to see is more of a systemic one, reflected in policies." She shares that whenever her older brother goes out in search of work, he feels very discouraged whenever he's asked to declare his condition. "He’s worried about the reactions of these prospective employers. In many cases, doors have closed. On the other hand, if he applies for a job at a millennials-run company, would they be more OK with it? We just aren't privy to these conversations."



Part 3


Caregivers Alliance Limited (CAL), a non-profit that provides support and training to caregivers of persons with mental health issues (PMHIs) and dementia, advocates for companies and schools to have more empathy for caregivers and to be more understanding to their needs.


For instance, if more employers and schools introduced more flexibility in their policies—say, by availing work/study-from-home arrangements and caregiver leave—caregivers can better balance their multiple responsibilities without jeopardising their jobs or studies.


Christine, an undergrad, would greatly appreciate more understanding from university administrators if she needed to take an urgent leave of absence or make changes to her schedule. “There've been instances when my brother's relapse would coincide with my mid-year exams,” she says. “I'd be studying at home in spite of the shouting in the background, and just telling myself to accept that I have exams to prepare for, even if my study environment isn't conducive.”


In the working world, flexibility is ever more crucial for caregivers. Nadia shares that she favours working for MNCs over SMEs because in her experience the former's HR practices are more progressive and the management is more sensitive to employees' different needs. "I’m fortunate to have been employed at larger, more international organisations, where I can confidently say to my boss, 'My sister is having a day' or 'I’m having a day' and I wouldn't be questioned," she explains. "I greatly appreciate the culture where I feel safe to tell colleagues I have a sister with special needs and for that reason, I need to take the morning off or come in later every now and then."


Nadia recounts an episode from the time when she was working for an American corporation. "Once, the regional HR representative saw me crying and came over to ask if I was OK. After I told her about my family situation, she invited me into her office. There, she explained that as an employee, there were certain HR benefits I could tap into, such as paid sessions with a therapist.”


Nonetheless, even with supportive employers and schools, it is crucial for caregivers to carve time out for self-care.

Christine finds solace in close friends and her church community. “I take care of myself by confiding in my friends,” she says. “I've known my best friend since primary school and she’s seen what my family has gone through over the years. Whenever I have a very draining day with my brother, it helps a lot just having a listening ear.”


She is additionally grateful to have friends from church—and her faith—to draw strength from. "My church group always motivates me by reminding me that there is hope. On very dark days, I have scary thoughts about losing my brother," she confesses, "but I ultimately believe God will protect my family and bring us to a place of hope again.”


Nadia, on the other hand, finds solace in meditation's restorative effects. “I started meditating since 2016 and that's helped a lot,” she says. “If I skip my 'me-time' for the day, I'd feel very wound up.”


To relax and feel re-energised, Veena from Caregivers Alliance suggests that caregivers take up hobbies and engage in pleasurable activities. CAL regularly organises activities for their members, such as finger painting and reminiscence therapy. "It's so important for them to make time for self-care, whether it's exercising or practising mindfulness,” says Veena.


Equipping caregivers with the necessary education and training is another way to empower them and build confidence.

To this end, CAL offers a Caregivers-to-Caregivers Training Programme (C2C), which includes a 12-week curriculum for caregivers of Persons with Mental Health Issues (PMHIs), and another at 8 weeks for caregivers of Persons with Dementia. "Through these programmes, caregivers will not only learn more about various mental health conditions," says Veena. "They will also acquire new skills to improve in communication and grow in empathy towards the loved ones they are caring for.”


For the benefit of caregivers who are unable to attend the scheduled classes, CAL offers its Individual Training and Support (ITS) programme, which imparts the requisite knowledge and skills while also providing emotional support to the caregivers themselves.


​Christine has noticed a very marked difference after her parents underwent caregivers training at CAL. “My mum became more calm,” she describes. “Previously whenever my brother had a breakdown, she'd have a breakdown too, plunging the entire household into a state of chaos. But these days she can handle the situation in a collected manner. If my brother acts up, she'll say, 'Alright this is what we’ll do,' even if it means going to the hospital."


Encouraged by her mother's newfound coping skills that has contributed to more stability at home, Christine herself decided to join CAL's training course to learn how to better support her brother and parents. “I was taught very useful skills about how to communicate effectively and empathise with a person with a mental condition," she explains. "Let's say the other party says to me, I’m feeling very sad because of something that happened today. Rather than say, I’m sure it’s nothing, don’t be affected by it, I could instead acknowledge their feelings and say, I know you must be feeling very sad, it must have affected you a lot. But I’m standing here with you. Applying such techniques in empathy and communication has helped me a great deal in my conversations with my brother.”


For the rest of us who want to do our bit to support a caregiver in our midst—whether a family member, colleague, neighbour, friend or acquaintance—but don't know where to start, Christine, Nadia and Veena suggest being a good listening ear.


It all comes down to the little things. Such as acknowledging that you know about the caregiver's additional responsibilities. If your coworker is a caregiver, for instance, Veena says the other colleagues could explore ways to help that team member cover work responsibilities as necessary—the same way they'd cover for someone who's on maternity leave.


“I don’t need someone to sit with me and try to fix my problems,” Nadia clarifies. “What I seek is empathy. I'm not looking for a psychiatrist, only someone to hear me out.”


Christine agrees. “I wish I could open up to more people about my struggles. But sometimes when I do talk to people, they feel like they have to solve my problems, or my older brother’s problems, or have a solution to my family’s challenges," she says. "But that's not what I'm looking for at all. The most helpful thing anyone can do is listen.”


Part 4


As caregivers yourselves, what advice do you have for others like you?


Christine: Caregiving can feel like you're carrying your whole world—and the world of the person you're caring for—upon your shoulders.That's a very huge burden for anyone to bear. But you don't have to be in this alone. Find the resources and support you need. Before I became a member of Caregivers Alliance (CAL), I was really struggling and did not know where to look for help or get advice on how to look after a loved one.


Nadia: There is no shame in asking for help. Caregivers need to understand that they are only human. We all have limits and there is no need to be too hard on yourself. If you feel like your efforts fell short today, tomorrow is another day to try again. I agree with Christine that it's important to find a support network—I cannot stress how much my life improved after I attended CAL's Caregivers-to-Caregivers Training Programme (C2C). Just knowing there are others out there going through similar experiences has made a world of difference.


How are you coping these days?


Christine: I'm trying to minimise disruptions to my personal schedule, though it can be challenging. When my older brother isn't doing so well, we'll talk till 2 a.m. in the morning or until our mother tells us to go off to bed. She and I both attended CAL's training programmes so we regularly remind each other to set personal boundaries and live our own lives. My mother's philosophy is, if I drain myself of energy, I'd have none left to continue helping my brother.


Nadia: There've been pockets of my life in which I felt resentful towards my sister. I'd think, "She gets all the attention, and here I am working hard, doing well in school and in my job, but have nobody to celebrate with as my family is constantly worried about my sister and whether she's going to have a meltdown." But I've learned to exercise self-care and take time for myself.


You are each caregivers of loved ones with mental health conditions. What have you learned about mental health?


Nadia: Taking care of one's mental health is just as important as taking care of their physical body. If you want a healthy body, you don't stay in bed all day—you get active and exercise your muscles to strengthen them. Similarly, you have to take the necessary steps to safeguard your mental health.


Christine: Some people mistakenly believe mental health is a matter of willpower; that if you had enough willpower, you wouldn't have a mental illness. But mental health is not something you achieve by "working hard to be more positive". And neither is mental illness the result of someone being "mentally weak".


A mental health condition is a physical condition like a heart condition or a liver condition. The only difference is that a mental health condition takes place in the mind whereas the other two occur in the body. So the question is: if it's normal to take medication for a heart or liver condition, why not for the mind?


Earlier you talked about the importance of lending caregivers a friendly listening ear. To end this interview, tell us anything. We're all ears.


Nadia: I want to encourage more people to check in on their friends, colleagues, or anyone they think may be going through something. You don't know someone's struggles until you ask them—for instance, you may not realise this, but as I’m talking to you, I’m functioning on five hours of sleep.


Caregivers also carry a lot of unnecessary guilt; at times we even feel bad about wanting to sit down at Starbucks to have a coffee. But I do wonder what it'd be like if I could just tell a stranger what I went through the night before. Like, "Oh man, I'm so shattered because my sister had a meltdown yesterday and I had to get her to IMH. The cops came and I had to watch as they carried my screaming sister away. It was 2 a.m. in the morning, and the commotion probably woke my neighbours. Such situations are upsetting for everyone, but my sister needs help."


Christine: I know of friends who either have mental health conditions, or whose family members do, but not all of them know where to turn to for help. Before I came to know of Caregivers Alliance, I did not know that there are groups of caregivers out there whom we can talk to and who can render assistance. As a society, we can all support caregivers better by first spreading awareness about the tools and resources available to them.

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