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.