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Ways to cope for caregivers of cancer patients

Prepare for challenging task by undergoing training and getting support from family, pals

It is said that serious illness affects not just an individual, but the whole family, and this is especially true when the patient approaches the end of his life.

Caregivers face many demands - physical, mental, emotional and spiritual - and although it can be a roller-coaster experience, many people derive great meaning and satisfaction from their caring roles.

Lyn (not her real name) had known about her mother's cancer for over a year.

She had assumed that everything was under control as there were no outward signs of any problems.

She was busy with her final year in university and looked forward to getting a job after graduation.

Then, her mother was suddenly rushed to hospital with bleeding and pain.

The bad news started coming, one after another.

Instead of improving, the cancer had spread and caused blockage of the intestines and kidneys.

Her mother emerged from surgery with a stoma at her abdomen, which serves to drain faeces out of her body. A stoma is an artificial opening from the intestine to the abdominal wall to allow drainage of intestinal contents.

Her mother also had two tubes sticking out from her back to drain urine from her kidneys.

In the weeks following her discharge from hospital, Lyn cared for her mother's wounds, bags and tubes, prepared her meals, as well as bathed and dressed her.

She also took on a part-time job to supplement the family income.

Although the medical expenses were heavily subsidised by the hospital, they had other bills to pay.

It was exhausting juggling so many competing responsibilities, and there were times when Lyn felt pangs of resentment - when she turned down invitations from her friends, or when her mother criticised something she did, or when her father came home late.

But she persevered. Her mother regained enough strength to go out for short periods. Then she had a fall. And another, and another.

The hospice home care nurse suggested that Lyn stop working. Her mother was getting weaker and needed to have someone around.

Her first reaction was anger and frustration. But it soon turned into fear and grief. She did not want to lose her mother, but she did not know if she had the strength to keep going.

The doctors and nurses from the hospital and hospice home care teams told the family that the time left would be short, and encouraged them to get more involved with the care.

After that, Lyn's father and aunt started spending more time at home. Her father even took a period of long leave.

Lyn was able to continue with her part-time work. A few weeks later, she received a call from the hospital that she knew would come one day, but dreaded all the same.

Her father had taken her mother to the emergency department that morning because she had become too weak to stand.

The palliative care nurse explained that her mother's condition had worsened to the point that she probably had only a few days left to live.

Her mother had told the healthcare team very clearly and calmly that she wanted to spend those days at home. It was not easy for the family. She died peacefully a few days later in her own bed, with her loved ones around her.

Caring for a loved one with terminal cancer, like what Lyn had to do, is a challenging experience.

It is normal to have conflicting emotions. People who are going through a similar situation may find the following steps useful.

•Prepare for the task in practical ways, by gathering information and receiving caregiver training.

•Get support from one's family, friends and one's faith community.

•Maintain a healthy mind, body and spirit. After all, no one can draw water from an empty well.

•Dr Noreen Chan is a senior consultant in palliative medicine at the National University Hospital and the department of haematology- oncology at the National University Cancer Institute, Singapore.

There were additional inputs in the article from Ms Elaine Ang, a palliative care nurse from NUH.

A version of this article appeared in the print edition of The Straits Times on January 26, 2016, with the headline 'Ways to cope for caregivers of cancer patients'. Print Edition | Subscribe