The untold reality of being a caregiver with Joan - Podcast Shownotes
From the age of 12, Joan had to play a part in being a caregiver to her loved one. With little to no knowledge of what mental health is, her family struggled to navigate caring for a loved one struggling with mental illness.
Mental illness affects not only the life of the person with the condition but also the people around them, especially those they’re closest to. However, caregivers may be thrust into their role without much knowledge on ways to cope or how it may impact their lives and well-being, as caregiving is a topic that isn’t usually discussed. Caregivers often have to keep what they go through private, and a typical focus on the person with the mental health condition means that few people realize how resilient caregivers need to be.
Read more: Caregivers need care too: Recognising and managing caregiver stress and burnout
Over time, caregiver burnout can manifest but remain untreated and trivialized – especially in an Asian context, where mental ill-health is deemed shameful.
Podcast excerpts
The following interview has been edited for brevity and clarity.
Alyssa: What are some of the challenges that your family has faced as caregivers?
Joan: I think the challenges have evolved over time. In the beginning, it was educating ourselves as caregivers, understanding what was going on, and questioning our preconceived ideas of what mental health is or is not. It took time to distinguish between when a person’s behaviour is driven by an illness, rather than the person who we used to know. As a family with a very traditional upbringing experiencing this in the early 2000s, it wasn't something we knew how to talk about: we didn't have the language to and we didn't have the mindset that it's okay to do so; there was a lot of shame and guilt.
The next phase is coming to terms with and knowing how to handle it externally, not just internally. We had to learn this over time. Now, we're all very open, and we realised that it helps the community because many people around us, in some shape or form, have gone through this. The biggest challenge now is to find the right support or treatment that is sustainable.
Alyssa: How did the role of being a caregiver affect your mental health?
Joan: At first, we didn't think about it at all. The idea of being a caregiver wasn't even there. When you're in survival mode, everyone just drops everything and all hands on deck. But as human beings, we're very adaptable, and that's where different coping skills come in. Personally, when I did find out that something was happening to someone we love, very naturally, even as a very young teenager, I made sure I was independent so I wouldn’t add on to the stress. All of a sudden, I needed to grow up and chart that life for myself. I think that was my biggest coping mechanism.
Alyssa: What did you learn from caregiver education?
Joan: The first and most important part was focused on understanding mental health and ill health from a medical and bio-psychosocial perspective, because then you can understand the behaviour of the person you're taking care of, how to read it, and not take it personally. The second part was learning to handle the situation and person. The biggest hurdle caregivers face is convincing their loved one that there is something not right, and that it's okay to go seek help. I learned about negotiation, conversation, communication, and doing these in a nuanced way.
Another important part is taking care of the caregiver. Caregiver burnout is very real. As much as the patients themselves are getting support from counsellors, psychologists, psychiatrists, and peer groups, caregivers should have those resources open to them. Some family members and I have attended this workshop and it's been tremendously helpful. For anyone going through their own journey, don't take the long path – there is a lot of structured learning available.
Alyssa: How do you deal with people who don't understand mental health or are unable to extend the empathy and understanding necessary for your loved one?
Joan: I will share candidly that the natural reaction is to be angry and frustrated, but it just comes from a lack of education and a huge gap in mental health literacy. We shouldn't blame them or react with negativity. I see it as an opportunity to share knowledge, because that's how multiplier effects happen. Whenever someone makes slightly ignorant comments, I usually take an ujjayi breath, smile, remember my role in this society, and say, 'Hey, I understand where you're coming from.' Empathise with them first, then share why. And sometimes you can agree to disagree – not everyone's gonna see it the same way, and that’s fine.
Alyssa: What's the best way that a caregiver can best help their loved one in terms of supporting their mental health and being there for them?
Joan: As caregivers, we are there to support them, but not walk the journey for them. The most important thing is to set boundaries, otherwise, you'll constantly find yourself being set up for disappointment and failure, which is not great for your mental health. Try not to project your benchmarks onto them, because they will have new benchmarks that you don't even know yet. To be fully supportive of that, educate yourself on what the symptoms are, what the consequences are, how it affects behavioural thought, and also emotional change, and really be with them on their journey, not the journey that you think they should be on.
Calm Conversations is a podcast series launched and facilitated by Calm Collective Asia. A means of sharing personal experiences, lessons, and advice, we speak to people from all walks of life about topics that are universally relevant yet often still taboo in the hope of normalising conversations about mental health.
Available on Spotify, Google, and Apple, you can tune in whenever and wherever. We hope that by listening in, you feel less alone, learn something new, and find the courage to continue these conversations with the people around you. Stay calm!