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Lessons I learnt from my caregiving journey by Daniel, Graduate, Caregivers-to-Caregivers Programme

A father recounts the confusion of dealing with his daughter’s behavioural changes, and the valuable lessons he learnt along the way

Our caregiving journey to our daughter Grace (not her real name) began when she started experiencing issues with her sleep cycle. She slept during the day, stayed awake at night, and constantly felt tired.

At that point in time, I didn’t know any better. I put it down to laziness and defiance common among teenagers her age. My wife Adelyn and I, at a loss of what to do, exhausted all means from pleading to scolding just to convince her to leave her bed. It was extremely confusing and infuriating for us to see her behaving like this.

This made Grace feel like no one understood her and she started retreating from the family. Adelyn and I likewise could not understand why she was not active like other teenagers. No matter how hard we tried, Grace just got angrier, and the situation spiralled into chaos. What we thought were supportive and encouraging comments were in fact not helpful at all.

School became extremely challenging for Grace. She struggled to open up to her peers and went from being a fun-loving and sociable teenager to one who shunned interaction. As parents, the change in our daughter’s personality was devastating to watch. She also began to suffer from depressive episodes, anxiety, and panic attacks.

Sensing that she was exhibiting signs of depression, we brought her to a doctor. Over the span of two years, we sought the advice from more than 10 doctors before we managed to get an accurate diagnosis. Finally, we found that she is suffering from a condition called chronic fatigue syndrome characterised by profound, debilitating fatigue that does not subside after a good night’s sleep. The similarity in both conditions had caused the misdiagnosis.

Identifying the illness made our caregiving journey slightly easier. Yet it was only the beginning. I would like to share a few valuable lessons I’ve learnt from being a caregiver.

Involving Grace in decision making

One of the greatest mistakes we made as parents was not involving Grace in decision making. Initially, many decisions were made without consulting her. It took a while for us to realise that this was probably not the best way forward.

We now understand the importance of getting her participation in making decisions. As a teenager, she has the intellectual capacity to think and decide for herself, and thus should have the opportunity to speak about issues and decisions that affect her.

Back when Grace was preparing to take her O-Level examinations, she started to grapple with anxiety and the fear of not performing well. Ultimately, we respected her decision to withdraw from school as we conceded that it was the best choice.

There is now a tripartite process where the three of us have a say on decisions. This includes trying out any new medication, treatment or anything that involves her and our family.

Lessons from CAL’s C2C Programme

Adelyn and I shared differing perspectives when it came to treating Grace’s condition. While my wife prefers to follow the doctor’s advice faithfully, I am more open to exploring alternatives, and attending CAL’S C2C programme was one of them.

One of the most valuable lessons I learnt was the importance of empathy. It reminded me that instead of having my own idea of what progress is, I should be looking at it from Grace’s perspective.

I used to think that my children had to enrol in a mainstream school. Grace dropping out meant that she did not have an O-Level certificate. However, this does not change the way she learns about the world.

Grace is an avid reader at home and has recently taken a particular interest in quantum mechanics (an interest she picked up from me). She is an extremely knowledgeable, astute, and observant individual who can engage in intellectual discussions with adults.

My new mantra: Less is More

As parents, we tend to be anxious about our children. But I have realised that sometimes, the less you ask, the more successful you might be in getting your children’s attention.

I used to nag at my children during mealtimes. When they refused or gave excuses, I made comments like “the food will end up rotting if you don’t come out and eat now!”. Now that I have relaxed my ways, I respond by saying “Fine, let the bacteria grow!”.

Excessive worrying and insisting on strict rules constantly can backfire. Sometimes, things actually go your way if you learn to let go.

Importance of self-care

Caregiving is like running a relay race. We consciously remember to take turns caring for our children so that the other party can have some personal time.

Many caregivers feel guilty for thinking about themselves, believing that they aren’t already doing enough for their loved ones. However, self-care helps to put the situation in a better perspective and reduces the likelihood of burnout.

Although easier said than done, self-care is an absolute must. My wife, for instance, will take a few minutes during the day to spend time on things she enjoys, like gardening.

Final thoughts

Caregiving has traditionally been seen as the women’s role and it is not often that men talk about caregiving. The decision to leave my job and in turn become financially dependent on my wife may not sit well with many. However, if more of us come forward and talk about our caregiving journey, the better we can shine the spotlight on male caregivers in our community.

As caregivers, we travel a unique and winding road that sometimes others may find difficult to understand unless they have taken the same route themselves. To that, I wish to tell you that you are not alone.


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