You were initially very negative about being stuck in your situation, having to take care of your elderly ill parents and facing mounting financial pressures while in your 20s. But 12 years on, you are now very positive and also an advocate for persons with dementia and their carers. Tell us how did the change happen?
To really be candid and brutally honest, coming to terms with the “dealing with it” phase took about 4 years, shedding the “why me” mindset, things really started getting better, it would be living with the situation and bettering each day as we go along. I could have wallowed in despair and often thought of giving up and ending it all; taking the easy way out, but trust me, there is no silver bullet to this, it’s an internal mindset that had to change and my behaviour and attitude towards caring for my parents, I am glad that I don’t regret the choices I have made in life to get to where I am today. To embrace what is to come and to walk this journey while doing the best I can for as long as I can for the ones I love so dearly. In order to see the rainbow, we have to first put up with the freaking thunderstorm.
You have a lot on your plate, and yet you co-founded Enable Asia. Why? What needs does your organization address?
Enable Asia was born out of a need, to share with others like myself, whom are struggling with balancing caring needs for their love ones with living a life without having to look back and feel the guilt, it is a place for caregivers to feel psychologically safe and be able to share their experiences to enable others to smoothen their learning curves with regards to caring for their love ones. We needed a place for others just to hear us out and listen, for we have been forgotten ever so often in this care journey. We would address caregivers concerns on anxiety, stress, burn-out and share practical coping strategies. Alongside care recipients who are living with dementia, we would like to co-create solutions that integrates art, technology, design, music, theatre, movements and the five sensory experiences.
Dementia is complex. Caring for persons with dementia is very challenging and you have cared for your dad for over a decade. What keeps you going everyday?
There are good days and the bad days, like a flickering lightbulb, we only hope for more good days than bad ones. Answer is simple, mum and dad did not give up on me when I was a baby; lack of a better word, filial piety. I role model my dad as he was a formerly caring for my grandmother who was bedridden for years, so caring is somewhat in our blood, our family ethos, our family’s mantra, I want to walk this journey with him till the very end, I only have one chance to do it, I cannot click rewind and repeat. I think of it as my way to say thank you to him and mummy for giving me life. Morbid but true, we will all be orphans one day and we are always on the care journey someway or other i.e. we were future caregivers, who became caregivers and in time, we will be former caregivers and eventually, we will become the person being cared for by others. There is no way around this.
Caregiver fatigue and depression are real for many here. How do you take care of your own mental wellbeing?
You have got to take the guilt out of your caring experience, self-care is a must, don’t feel guilty when you are out enjoying spa time or at the gym or to watch a movie or just spending some time each day doing the things you love, my coping strategy is to make myself still relevant and useful at the workplace, a win at work is a win at home, because I take my success outside of home, bring it back to celebrate it with my folks. I know what is like to feel useless and be worse than garbage, but there is only one way to go when you hit the bottom, and that is to go back up, but it is a crazy crazy journey of ups and downs – I kid you not! Wellbeing is a huge word, it means differently to different people, so I think of as, what can make you smile and make you burst out laughing…as the saying goes, laughter is somewhat the best medicine. A word of caution, don’t sweep your anxiety under the carpet, it will manifest into a monster you won’t like to see in the mirror.
Tell us something most people don’t know about the role of caregiving?
The art of conversation is key to caring for someone, be it tell, ask or suggest, this useful technique is what I have learnt over the years. With you owning your talk and the conversations you have with your love ones, magic happens. Challenging your love ones is not wrong or bad. Dad went from not wanting to walk, to a walking frame, to a four-legged walking stick, to a single-led walking stick to now, his favourite accessory, his stylo-milo umbrella. It is easy to go from the umbrella to the wheelchair, so how often do you see it go the other way round. I did it, with challenging him and giving him back his dignity and role as my father. He still has it in him to be my father, so ladies and gentlemen, please listen to your love ones on what they like and what they don’t like, address it, push it and help your dearest ones evolve with enablement and empowerment. Like Abraham Lincoln once say, I don’t know that man, I should get to know him better. I am learning about my dad all over again, day after day, your patience will pay off. Please learn about the one you are caring for.
Most families struggle to accept their mum or dad’s diagnosis of dementia. Share your perspective on living with dementia?
It allows us to do the same things differently everyday. Same same but different. Like the movie “50 First Dates”, everyday is a brand new day, the sun will rise and set, regardless, the tide will rise and recede, how we accept and not be in denial is key, one you go past the denial phase, it will get better. We struggle to accept is because we don’t know and do not have enough information. I am not saying, everything will be nice and rosy there on out, there are shit shit shit days mind you, what I am saying is, how you can make each new day, better than yesterday, how you become the best version of yourself each day, to handle the tsunami and storms that will hit you. You can only be a better version of yourself and you are in control of that. Beyond that, always remember that when you make decisions, involve your love ones, they have identity, character, personality and a voice too. Dementia is long tail, your love ones will not disappear immediately tomorrow, they still have it in them, in their mind to understand, so please involve them.
What would you say to those who feel burnt out from being the caregiver at home?
Go to your happy space, be it a place, be it an indulgence, be it just thoughts. Recognize the red flags, your own red flags, they are unique to you, just like your thumbprint, and be willing and ready to talk and share about it, when you are willing to talk, there will be others who are willing to listen. It ok to feel not ok and at times, even talk into the mirror, at least you are talking to yourself, it only becomes worrying if your reflection in the mirror talks back at you. You cannot do this alone, so please also be open to share this with the community you live in. My neighbours know dad has dementia, and once they knew about it, you will get that support, when you are ready to let others in, you will realise, your load becomes a little easier to carry.
What does thriving mean to you?
I thrive when I am engaged, enabled and allowed to live my passion, big or small, be the best version of myself (I cannot really be someone else anyway) to do the very best I can for as long as I can with the things that matter for the ones whom I love so dearly.