IN caregiving, clarity of family roles and scheduling of duties are important. Sometimes these roles are quite clearly defined because in a large family, each sibling has their “duty” rostered out. However, sometimes it’s not always easy or straightforward.
My late parents had a slow transition into illness. It started with regular check-ups and medications were prescribed. Those increased as the years progressed. My younger sister was in charge then and she kept us updated.
It was when dad and mum needed to be hospitalised for emergency admissions that we all banded together and worked as a tag team, complete with duty rosters and time slots. We fell into our roles and duties according to our strengths and availability.
Who’s the primary and secondary caregiver? Who’s the contact person? Who’s the one to speak to the doctors? Other functions included those who could be on day or night shift, take care of the parent at home, be in charge of transport and also be the companion for the parent who’s well. For the latter, we found that we needed to have two people to execute it — one to drive and the other to always be with the other parent. It wasn’t always easy to have one person do this because of parking problems. Parking lots were always too far or never enough or available at hospitals. Of course you can always drop off your parents at the entrance, ask them to wait there until you park the car. We used to do that but there were times when our parents had to wait too long. Meantime, they’d get approached by all sorts of people, some waiting to prey on lone elderly folks to sell them things or just general con. Yes, this happens at hospitals too. Because of this, we needed two people just to take one parent to the hospital to visit his/her beloved spouse.
There was a time I was there at the hospital so often, almost every day for months and sporadically for a few years that people thought I worked there. Some people also addressed me as “doctor”, much to my family’s amusement. The staff, however, knew better. When they saw me there, they’d always ask, “Who is it this time? Mum or dad?” They were concerned and sympathetic. My parents were taking turns being admitted.
There was one time when both were hospitalised albeit on different days but on the same week. They had different rooms on different floors because of the nature of their illness. We could laugh about it now, but at that time, all resources and siblings were deployed. We had to take leave from work. It was a tough week all round.
IMPORTANCE OF COMMUNICATION
There are just so many things to do, and to micro manage too. At our end, we had to keep ourselves healthy and bug-free. Anyone with a cough, cold or flu was disqualified from hospital duty. They stayed away and helped from a distance.
In addition to caring for our parents, we all had jobs to keep. We also had our home and family to care for. There were limited days we could take before employers became wary, weary and unsympathetic. The same went with some friends and acquaintances too. They started viewing our absence from their realm as our excuse to stay away.
Being a caregiver isn’t just a thankless job; it’s payless too. Who’d pay you unless your parents or siblings wish to give you a token sum or allowance? We didn’t ask for payment, nor did it ever cross our minds until now, years later after they’d passed away, when some people are raising this question.
If there’s something I’ve learnt as I recall this issue years later, it’s the importance of communicating with your family, clearly and openly. Nobody really likes to talk about money and who should be paid what. Nobody likes to talk about death either.
It’s a good idea to have a family meeting to update everyone on this. All the caregivers in the family should be present. Most importantly, if the loved one in your care is well enough to make decisions for himself/herself, they should be present in the meeting to express their wishes.
My late father, who by then knew he wasn’t well, initiated this task. He’d also given certain things a lot of thought and wanted us to know his wishes. It was difficult for us to sit and listen to him talk about his death and what to do when it happened, but he made us all listen, understand and promise to carry out his wishes. This spurred mum to speak up for herself too.
It was one of the heaviest and most emotional meetings in my life. Promises made and solemn duties given out lay heavy in our hearts. I think each of us quietly prayed for our parents’ healthy and long lives. But we knew no one lived forever. When the time came, we carried out the promises we made to them.
Putri Juneita Johari volunteers for the Special Children Society of Ampang. You can reach her at juneitajohari@yahoo.com