The roller-coaster ride of the caregiver

PHOTO: The roller-coaster ride of the caregiver

Being a caregiver challenges you. It tests you beyond your limits and puts your organisational skills to the test. It is often about how well you multi-task. Most of all, it challenges your ability to manage time so that you provide the best care while having time for yourself.

I have written about how caregivers should take care of themselves in terms of health and well-being, as well as coming to terms with the emotions that come with the task at hand.

The "job" of a caregiver can go on for many years. After the emergencies and heart-stopping moments, the management of care becomes a routine, albeit a demanding one, though you are in a constant state of watchfulness.

Some 20 years ago, my son Omar was born with a congenital defect in the brain that caused constant seizures until he had surgery at 2. But those honeymoon years lasted only for 10 years before the seizures returned to stay.

In the two years before surgery, Omar had up to 80 seizures a day, and those were fits that we could see. The EEG tests on his brain showed that activities were normal for only about 15 seconds out of every minute. He was effectively having seizures all the time, and that was life-threatening. Something needed to be done and quickly.

My heart never stopped aching whenever the "grand mals" or major seizures occurred. It was too often.

Certainly Omar's condition affected our lives. My work and everything else revolved around Omar's needs - hospital visits to see doctors and therapists as well as other intervention sessions. I have been very fortunate to be surrounded by such supportive family, friends, colleagues and bosses.

Then came the operation and the rehabilitation. Everything was in a state of "go, go, go!" We had goals and results to try to achieve. Our work was quite cut out for us. We were so focused that we managed to reach many miraculous milestones. Omar could finally somewhat catch up on those "lost years".

I could send Omar to school. It was indeed a joyous moment. But no one talks about picking up the pieces of your life after that. Finally, I had a bit of a breather and while I had plenty to do, I felt a sense of loss.

Omar still needed me, but in a different capacity.

Something had shifted and I had to adjust. It's like when you send your toddler off to playschool and he confidently turns around at the door to wave you off with a cheery goodbye. Your heart clenches at that separation, yet you feel so proud that your child is growing up.

I went back to work full-swing and the doctors were very pleased with Omar's progress. It all seemed so rosy.

Then, the hospital in the United States, where Omar had his surgery, came back with a review of all the similar cases (less than 100 candidates). In more than 80 per cent of the cases, the seizures returned. Though the seizures weren't as bad as pre-surgery, it was a regression in most cases - the proverbial "two steps forward, one step back".

The doctors advised us to maximise Omar's learning rate. It was about damage control and preparing for the worst.

I quit full-time job to freelance. In less than two years, I stopped writing all together. It wasn't until another 10 years that I started writing again.