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Caring for caregivers

The holiday bells were ringing and the school year had officially come to an end. Spirits were high and laughter ringing through the house as three generations gathered to mark the end of the year together.

It was December 2019, six months after Zulhilmi’s parents had sold their house and moved into Zulhilmi’s house to spend more time with their four grandchildren.

“My wife and I have full-time jobs and we were both excited and thankful that my parents were moving in to help to take care of my young children,” said the 36-year-old business owner.

“What we didn’t expect were the major turn of events to come.”

It began with a rushed trip to the Accident & Emergency Centre when Zulhilmi’s father took ill. Checks were performed and the results came in. It was cancer.

“I was told that my father had stage 1 colon cancer,” recalled Zulhilmi, upon receiving the diagnosis from the surgeon. Tumours were found during a colonoscopy and Zulhilmi’s father was quickly scheduled for surgery to remove the cancerous tumours.

The year-end became solemn as members of the family slowly came to terms with the diagnosis.

Fast forward three months later, joyous laughter was once again heard in Zulhilmi’s household as they prepared to celebrate the birthday of his son. It was a welcoming and timely change after a stressful time.

The family adjusted to new routines to ensure a smooth post-op recovery for Zulhilmi’s father. At this juncture, just as the family started to cope better, things took another downward turn.

“I will never forget that day. On my son’s birthday, we received the second cancer diagnosis.”

Zulhilmi’s mother who was having pain in her stomach was admitted to the hospital. On the same night, she was diagnosed with stage 4 colon cancer. 

“Two diagnoses within a span of just four months? I simply could not take the news and broke down,” said Zulhilmi.

Like Zulhilmi, many caregivers for cancer patients take on the caregiving role with little or no preparation, as a cancer diagnosis is usually unexpected. Coupled with a caregiver’s usual roles and responsibilities, attending to the unique care needs of patients with cancer can be very challenging.

For example, a caregiver has to understand the physical and emotional impact that cancer can have on a patient, the side-effects they might experience and how to attend to the needs of the patient. They often also have to help to manage treatment-related finances.

Months after the second diagnosis in Zulhilmi’s family, COVID-19 landed on the shores of Singapore and the circuit breaker took place. Nationwide measures were put in place to curb the spread of infection and like many others, Zulhilmi’s renovation business came to a halt.

Zulhilmi said, “As the only child, the sole caregiving responsibility for both my parents fell on me. I was worried for their health conditions and at the same time, my business was affected by the pandemic.”

Zulhilmi is one of the many cancer caregivers who have had to face additional challenges in these unprecedented times. They include keeping  loved ones affected by cancer engaged without exposing them to unnecessary risks, as well as minimising the risk of infection when they travel to undergo treatment as they are immunocompromised.

Furthermore, as the world’s economy is severely affected by the pandemic, it has also affected the local economy, leading to worries about financial stability, which has amplified the stress and anxiety faced by many caregivers and patients.

At the National Cancer Centre Singapore (NCCS), a team of medical social workers and clinical psychologists provides support to cancer patients and their caregivers through counselling and support programmes. The team from the Psychosocial Oncology Department, can also direct caregivers to assistance schemes. In addition, they have resources and tips to help caregivers cope better with stress, feelings of anxiety, anger, guilt, loneliness.

“The resources I received at NCCS are helpful and I am also thankful for my spouse and the strong support system in the family. For example, my sister-in-law who is a nurse, manages the stoma bag care for my father, this is such a help for us.”

"It has not been all negative. Despite everything, we found strength in praying together as a family, and saw the additional time together during the circuit breaker as a blessing in disguise,” shared Zulhilmi. 

Caregivers whose loved ones are undergoing treatment at NCCS can call 6436 8088 to schedule an appointment to find out more about counselling and support sessions available for patients and caregivers. Video consultations are also available.

Alternatively, caregivers can also reach out by calling the National Cancer Hotline which operates 24-hours day. The Hotline is manned by trained counsellors and volunteers who are able to advise and direct caregivers to relevant support resources.