strength of a caregiver mother
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When the diagnosis came...
When the diagnosis came...
I was at a loss.
I didn’t expect it to happen.
I did not know what to do.
Whatever the doctor asked of us, we just did it at that moment. After a while I researched more and tried to understand Timothy’s condition more. His illness fell in the lower end of the risk levels, so the treatment was not so vigorous in the beginning. But after that things started setting in. We had to face reality, communicate with the doctor more, do even more research. The doctor we had was very patient, kind and experienced which helped. We had 1001 questions in our mind. ‘What was the prognosis, what was the success rate?’ We questioned ‘Is the procedure necessary? Maybe we should cut down the dosage or stop.’
As Timothy’s mother, I was his primary caregiver during the 1.5 years he stayed at the hospital. I was basically his private nurse, his ‘Grabfood’ driver. I send food to him, send the containers back home to wash, send another set of food to him, talk to nurses and the doctor. I also had his treatment protocol with me, so I was quite diligent in taking his white blood cell counts every day. I also slept over every night. Timothy’s nature has always been cheerful, optimistic and caring. He’s very amicable which is why he has a lot of friends. I think that is his strength which helped him through treatment.
We had to settle and inform the school, make arrangements as to who takes over my role at work and break the news to my family. I stopped going to the office and my husband took over our business together. I completely stopped mending the office work, but it was so hectic, and it was a lot of running around. For Timothy, he had to stop going to school completely to focus on treatment and the hospital was
celebrating timothy's birthday before chemo phase 2
strict on not discharging him at all. Even when he had to go to the National Dental Centre to remove his braces, they sent him there in an ambulance.
Every morning, the doctors would come in and make their rounds at 7am. I wake up half an hour before that to get ready and wash up. Then I talk to the doctors about the procedures on that day before heading home. At home, I take a shower while lunch is being prepared. Timothy did not prefer the hospital food and wanted home cooked meals. I bring the food back to the hospital in time for his lunch at noon. I stay till about 4pm then I would come home again to pick up dinner to send back to the hospital at about 7pm. By then my husband would have finished work and sometimes him and our daughter would join us for dinner at the hospital. My husband then sends the dishes back home.
I spent about 20 hours of my day in the hospital,
that I got so used to the procedures.
Sometimes I remind nurses about his white blood cell count. If it was too low, they cannot administer the chemotherapy because the immune system would be too weak. So sometimes when the nurses change shifts, they come in to give him the chemotherapy and I will remind them about his low white blood cell count and ask if we really need to go through with it.
on a family trip in usa
2019
It was taxing, physically and mentally. Sometimes I felt like breaking down, but I couldn’t show it in front of Timothy. The toughest part about the whole thing was seeing him suffer. I wished I could suffer for him, but I couldn’t. When he hugged me while being in so much pain, I was heartbroken. I couldn’t help and could only pray for him. Many times, I cried by myself, but I just carried on.
As I’m away from home most of the time, one thing I felt in my heart also was neglecting my daughter, who is two years older than Timothy. She was preparing for the ‘A’ Level Examination and was always alone during the year and a half of Timothy’s hospital stay. During that time, she felt that he was more important to us than her, but she was still understanding enough of the situation.
Photo: Nakanishi Shoi, 2020
Timothy often didn’t want to eat his medicine; he would hide it or throw it away in the trash bag. I would show my frustration and remind him to eat the medicine to get better. Yet later I found out he threw it away. It was so agonizing. After the nurses found out, they would come in and check on him every 15 minutes to make sure he really ate it as he was still young.
I didn’t have a social life;
I couldn’t care to meet up with my friends.
I could only go to church on Sundays.
My brothers and sisters would take over and accompany Timothy in the hospital room. Sometimes his cousins would stay with him too. My faith really helped me get through this and I had a lot of support. My family is the main pillar in my life who helped me. It was tough but when you feel everyone supporting you, the journey feels easier and lighter. We prayed every day for the strength to go on. My helper was also a big support to me and my family. The hospital staff and our doctor as well. He was very understanding. When I saw that Timothy was suffering too much, I asked the doctor to stop the procedure for just a while. He understood and allowed it but sometimes he would explain to us that it’s a proven protocol and we must stick to it. To have a reassuring doctor was very useful as well, and the fact that he was very experienced helped us a lot.
I was so happy the day we got the report stating that Timothy was cured. That’s all I remember. The way I think our human mind works – I don’t try to remember that period of time. I wish it didn’t happen. It was so tough and would have been even tougher without the support of my family and my faith. Unlike Timothy, I just bury it, move on with life and be thankful for whatever we have now. We go back to the hospital every six months for an assessment. I still get so nervous each time I see the report.
One thing I cherished the most was that my relationship with Timothy grew even deeper and we became very close. We spent more of our time every day together as it was just me and him. We’re a close-knitted family and now we have become more structured in terms of our schedule. On the weekends, we would sit and have lunch together, or play Chinese chess together. Before this whole journey, we took it for granted. Now we make an effort to make sure everyone is around. Our old lifestyle slowly returned, and life went back to normal. Everyone is back at work and school.
Photo: Nakanishi Shoi, 2020
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My son taught me to be optimistic and cheerful. Sometimes we wonder how he could joke around despite his suffering. The nurses liked to treat him and talk to him because he was still able to bring joy to the people around him. I wish my past self was more patient. I’m a very impatient person even nowadays. I should have stopped for a moment and not rush things. To those that are going through a difficult situation, be patient. Enjoy and cherish the moment because sometimes life goes by too fast and we miss out on a lot of things.
