Caregivers’ needs matter too

A CANCER diagnosis affects not only the patient but also their loved ones. It is never easy having to deal with cancer. There are so many choices and issues to grapple with – medical, financial, emotional, as well as logistical problems that can seem overwhelming.

While the focus is rightfully on the patient, caregivers need support too, says National Cancer Society of Malaysia’s senior nurse, Margaret Kumar.

“Family members often become the caregivers for their loved ones. As a caregiver, you actually become a ‘co-manager’ of a patient’s care. This is a tough job and the physical, financial and emotional stress is very real. To get through it, families must work together as a team and share caregiving duties.

“They must also learn about their loved one’s condition, prognosis and treatment as well as the side effects that come with it,” says Margaret who has worked in oncology wards for 17 years. At NCSM, she not only lends support to patients and their families who call in but also trains nurses to take such calls.

The main role of caregivers, she points out, is to lend support to a patient through their cancer journey. Cancer treatments are almost always brutal and the side effects debilitating.

“Providing emotional support is crucial. So is positive reinforcement. Treatment has side effects which can affect a patient’s self-esteem ... such as losing their hair or weight. Caregivers must advocate for the needs of the patient too and help them with decision making if they ask for it. Also, cancer patients often need help communicating with family and friends when they are feeling unwell,” says Margaret.

Family members often carry out their caregiving roles on top of their jobs and other responsibilities. They need to be pragmatic and take care of their own well-being before they can be effective caregivers.

“Take breaks and do things that you enjoy, like spending time with friends or people who are important to you. It is important to be kind and patient to yourself. You need to deal with all the emotions of being a caregiver too. Talking to a friend or writing a journal can help,” says Margaret.

Although there are no formal or structured support groups for caregivers in Malaysia, NCSM does offer ad hoc support for families or caregivers. There are also programmes for them to participate in. NCSM also has a helpline which is open to cancer patients, survivors and families.

For cancer information or support, call the NCSM hotline at 1 800 08 1000 from Mon-Fri from 8.30 am to 4.30pm. –