New Straits Times

Adapting to the ‘new normal’

- I, Caregiver Putri Juneita Johari VOLUNTEERS FOR THE SPECIAL CHILDREN SOCIETY OF AMPANG. YOU CAN REACH HER AT JUNEITAJOH­ARI @YAHOO.COM

MY son, Omar, was supposed to have an appointmen­t with his doctor at a government hospital in March when the Movement Control Order (MCO) just started. However, because he was considered as someone who’s more vulnerable to becoming severely ill with the Covid-19 virus, his appointmen­t was postponed and reschedule­d for two weeks later.

Unfortunat­ely, the MCO was extended for another fortnight. So my son’s appointmen­t had to be re-considered. This particular appointmen­t was important for him not just to get his prescripti­on but it was his annual review where the doctor needed to assess him for a fresh prescripti­on.

Do they maintain the same regime and dosage, increase or decrease his medication, consider an alternativ­e medicine or stop altogether?

Omar’s doctors are very careful about the medication­s prescribed to him because long-term use of unchecked dosages can cause all sorts of damage to his liver and kidneys, among other things.

Even though the perfect combinatio­n has finally been achieved (it took nearly five years to fine-tune the right dosages of the different medication­s), nothing remains constant.

Omar could have gained or lost weight as he got older. He already has some white hair!

His behaviour may be different now compared to when he was younger, not just due to age but also hormones. There may be other changes that only a trained specialist would know and detect.

When I take Omar to the hospital for such appointmen­ts, we usually spend at least two hours there, sometimes longer if they need to do blood tests or X-rays.

The minutes add up — from the time we arrive, take a number and wait for his turn to get his vitals, see the doctor, get his prescripti­on, receive new appointmen­t date and get the medicine.

It’s a good thing I usually get someone to drive us on such trips out so that I don’t have to struggle to look for parking and then make my way to the clinic. That in itself poses a great challenge.

After several calls to the clinic, Omar’s doctor said that we should, for now, keep that appointmen­t but leave Omar at home.

He should not be exposed to possible infection at the hospital because he doesn’t understand social distancing nor will he wear a mask.

We can’t keep his hands clean all the time because he’d touch anything and everything and then put his hand into his mouth.

For the purpose of getting his medicine that was about to finish, I had to see the doctor and discuss with her what needed to be done. Omar must not be without medication­s or his condition would go haywire.

Appointmen­t In Absentia

So this appointmen­t was to be one in absentia. In preparatio­n for this, I videotaped snippets of Omar on an ordinary day. Any concerns I had about his condition were highlighte­d in the videos too.

These videos proved to be useful to the doctor who watched them several times, zooming and enlarging where necessary while asking questions.

Since I had anticipate­d that the doctor might want to “see” Omar for herself to form her own opinions instead of hearsay from his mother, I’d asked my other son to be on standby at home with Omar for a video call.

It was a good thing that I’d made this arrangemen­t because it really helped the doctor in her assessment.

With the video clips and the video call, the doctor was satisfied with what was presented to her

Omar was prescribed his medication­s to last him for the next three months. If all goes well and the MCO were to be lifted, the doctor said to bring him in for a proper review.

Our lives as we know it before the MCO is now so different. The new normal is no longer what it used to be. When you have a loved one who’s physically and mentally challenged, sometimes there’d be more than one caregiver present. This makes it a small group of three people per patient.

There are thousands of patients in a hospital each day. Add to that their caregivers and the hospital staff — that’s a lot of people in one place. The way we’re discoverin­g about the nature of the virus causing the current pandemic worries me.

It’s not just about taking my son to the hospital for check-ups. It’s also about how he’s supposed to resume his daily life after this ordeal is over. For those who are vulnerable to this virus, personal good hygiene as well as in his living space alone isn’t enough.

In a room full of people filled with children and adults (challenged or otherwise), the possibilit­ies of getting infected are very real. It’s the same anywhere for that matter, whether it’s the hospital or school.

It feels like every interactio­n we have could lead us to being infected. We’ve become paranoid about this invisible miasma. Hopefully there’ll be solutions to address all these concerns in due time.

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