National Caregivers Day falls on 18 February — and this year, Jaga-Me searched for untold stories of caregivers and how their respective caregiving journeys have impacted their lives. The amount of effort that goes into caregiving is often overlooked and underestimated, but stories like Joanne’s remind us that while caregivers focus on providing love and support for the ones under their care, they too have their fair share of hopes, struggles and sacrifices.
When we first heard of Joanne’s caregiving story, we were in awe of how a relationship with a stranger could develop into something so much more. We sat down with Joanne one rainy morning, and listened to how her unexpected encounter with Mdm Soon changed her life forever.
How did you meet Mdm Soon and her daughter in late 2017?
I wanted to look for a place closer to my workplace back then. A property agent who was recommended to me by my late violin teacher brought me to view a few apartments (my violin teacher passed on several months after helping me to secure a new, reliable place to stay). Out of the three apartments I had gone to, I ended up choosing Mdm Soon’s place as she was the only person who allowed me to bring in my piano. That was how my “accidental” caregiving journey started — something which I still had no clue was going to happen when I first moved in to stay at Mdm Soon’s place.
How did the caregiving for Mdm Soon start?
Mdm Soon comes across as a patient and caring person. My caregiving for Mdm Soon (and her late daughter, Rowena) all started when I offered to accompany Mdm Soon for her regular medical check-ups and also following up on her daily medication intake as she would tend to forget to take her medications. This then led to me unintentionally always thinking of ways on how to help Mdm Soon improve on her overall health status through the modification of certain lifestyle habits (e.g. staying active at her age, well-balanced diet, avoiding social isolation). I personally felt she had to keep herself healthy as she also had to provide 24/7 care for her special needs daughter. Without Mdm Soon remaining healthy, the care towards her special needs daughter would have also been affected.
Mdm Soon’s pill organiser, which helps with her daily medication reminders.
How did your relationship with Mdm Soon develop over the years?
Upon reflection, I now feel this is a rather strange encounter as I had not expected to grow close to Mdm Soon over these few years. I came in as a stranger to this little household and ended up being the regular observer of both mother and daughter’s daily interactions and offering help in the care of Mdm Soon’s special needs daughter whenever necessary. My decision to study nursing in recent years had come in very handy in helping Mdm Soon cope with her own struggles and that of her daughter’s occasionally intensive care needs. As a hospice nurse, I have crossed paths with various individuals, be it patients or caregivers, with all kinds of personal struggles. One of the questions usually asked in my area of work is how a caregiver would cope after a close loved one passes on. I realised it would be challenging for Mdm Soon to go through yet another loss in her life after losing her father and husband. Hence my decision was to do what I can to support Mdm Soon in coping with the loss of her daughter, and to find out what else Mdm Soon could do to move on with her life after spending her daily life focusing solely on her daughter.
Mdm Soon and Joanne looking through photos of their time together with Rowena.
We go through life having various labels tagged to our identities. Mdm Soon was a daughter, wife, and mother. She lost all of those three meaningful titles and was then left bereft of a parent, became a widow at a young age and having to care for her daughter by herself, and was in recent years bestowed the unwanted title of a “vilomah” (a parent who had lost a child). I think that’s just too many losses to experience in one’s life.
I have encountered my own fair share of losses, but I feel what Mdm Soon has gone through is far worse than anything anyone could imagine. What more, she has the type of soft, kind-hearted, sincere personality which makes it so easy for anyone in the community to take advantage of her. It is Mdm Soon’s nurturing and understanding nature that made me really want to go all out to help her – for example, when I was unwell, she would go out and buy porridge for me.
Joanne and Mdm Soon on the dining table, where they have meals and conversations together.
What would you say was the turning point in your caregiver journey?
The turning point in my accidental caregiver journey was being able to gain Rowena’s trust only after almost three years of my presence in her life. By then, she was already diagnosed with cancer. Rowena was born a normal child but gradually ended up with various comorbidities and eventually lost her ability to walk. Mdm Soon had once shared with me about how Rowena had previously kept watching her kindergarten dancing videos when she was already wheelchair-bound. I can’t even begin to imagine the grief Rowena had felt while watching her past happy self in her already disabled state. Rowena would’ve had dreams and ambitions just like many of us girls from the Gen-Y group. But so many things were not meant to be for her, thus causing her to feel inferior and wanting to isolate herself from others.
Another turning point in my caregiver journey was when some of Mdm Soon’s friends had jokingly told her I’m her goddaughter, especially after Rowena’s demise. I’ve not been able to see my own parents in real life for the past two years due to the COVID-19 pandemic. It’s indeed a surprising blessing to have someone around who could look out for me while I’m far away from home.
Joanne and Mdm Soon sitting in the living room.
How did you adapt to this new phase of your life as a caregiver?
I am normally tired after work and must balance between part-time studies, volunteer work and making regular contact with my parents back home in Malaysia to ensure they are alright (long-distance caregiving). I think anyone without a background in healthcare or even basic caregiving skills would’ve immediately moved out after witnessing the struggles of both mother and daughter. I’m thankful for my own parents’ support for my decision to pick up nursing skills in recent years. It has been an insane journey having to adapt from being an office executive with a postgraduate in management qualification working regular office hours to being a nurse starting with a diploma and working shift hours. I think adapting to this new phase of my life and being given the privilege to personally journey with two very special individuals (Mdm Soon and her daughter) outside of my work hours is something worth adapting to. Both mother and daughter have taught me many life lessons (of loving, caring and seeing beyond one’s disabilities; of patience, resilience and never giving up on your loved ones despite various challenges posed).
What were some of the hardships you experienced while caregiving? Did you have to make any sacrifices?
It pained me to sometimes hear Mdm Soon’s daughter calling for her mother when she was in pain (after her cancer diagnosis). Mdm Soon, feeling stressed at times, would sometimes be at a loss as to what to do when her daughter was in pain. Again, my work experience as a hospice nurse somehow came in handy in managing certain crises at home (e.g. severe pain episodes, vomiting episodes). There was a time when Rowena was rather weak and ended up falling to the floor just when Mdm Soon was trying to transfer her from the sofa to the wheelchair. I had to remain calm and give constant reassurance to Mdm Soon while guiding Mdm Soon as both of us carried Rowena up from the floor.
In terms of sacrifices, I think I had previously sacrificed some much-needed sleep after Rowena’s demise as Mdm Soon was still recovering from her grief and would normally wake me up late at night as she had dreamt about her daughter and was afraid and needed reassurance that everything was alright.
I sacrificed a bit of my time and more sleep as I tried to secure Mdm Soon a job about one year after Rowena’s demise. Mdm Soon is a relatively healthy person in her late sixties and had not been working for the past twelve years up to the time her daughter had passed on (she was a kindergarten Teaching Assistant). I felt it rather unfair to have so many people not wanting her to return and contribute to society as a regular citizen would. I am glad I managed to encounter a few helpful people from a Buddhist organisation who are willing to help Mdm Soon and she is now gainfully employed as a Programme Helper at a childcare centre. She loves children, is very nurturing by nature and I felt it would’ve been a waste to not have her talent and skills put into use again.
Mdm Soon, sitting on Rowena’s favourite chair in their living room.
What are your hopes and dreams for the future?
I hope Mdm Soon can continue to be the patient, caring, strong, resilient person that she is. She has overcome so much to be where she is today.
I hope society could be more understanding towards parents of special needs children. Through Rowena, I realised special needs children could at times rationalise and feel things way better than most of us. I feel society should not ostracise special needs children as though they’re invisible just because they’re different or unique.
Mdm Soon had shared with me about how some people would keep telling her to just leave Rowena alone to fend for herself or to just leave Rowena in a home for the disabled. It’s not that simple when one is not the mother who had given life to that one child, even though the child is not like the rest of us. There is still so much stigma that surrounds this situation and I think our society, in general, still has a long way to go in terms of being more accepting towards those who are not quite like us.
What are some lessons you have learned as your journey as a caregiver? Is there anything you would do differently?
I have learned that I should be more patient. I have also learned that despite coming from different backgrounds, our struggles and emotions are almost similar and the one good thing that can be done is to support one another through our difficulties. There is nothing that I would’ve done differently. If I could, I wish I could’ve done more to help Rowena come out from her shell as she had been born normal and then gradually lost her abilities to function like a normal person, thus likely making her feel like a “loser” and simply shut herself away from everyone except her own mother.
Rowena’s favourite cartoon character plush toy, Pikachu, on the book shelf along with Joanne’s books.
If you could share a piece of advice with other caregivers what would it be?
You are not alone in your journey. Find a support group to join. If you can’t find one, seek help from whichever organisation/healthcare organisation that’s supporting your family, ask them to refer you to relevant groups that could support caregivers or render the required assistance. You should not be struggling alone!
As a caregiver, having time for yourself and recharging is important. Jaga-Me provides respite care services should you need a replacement or part-time caregiver. Learn more about our caregiving and nursing services today.
