The Demands of Being an End-of-Life Caregiver: A Case Story

By Puspita Hossain

In Bangladesh, institutional palliative care, or end-of-life care is still not as commonly available for patients. And for those who live in urban slums, receiving institutional end-of-life care seems close to impossible. Home-based care here is more popular; when someone gets sick, he or she is cared for by his or her close ones and end-of-life care is no different. This is also true for urban slum dwellers as the terminally ill patients are cared for by their close family members. But do we ever stop to think of what it entails? When taking care of a dying patient, how does the caregiver feel? From a recent study conducted at BRAC JPGSPH examining palliative care services in Bangladesh, here is the case story of Nahar (pseudonym) who use to takecare of her mother-in-law, who recently passed away.

Nahar is only 18-years old, but has already been married for one and a half years and recently gave birth to a baby boy. She used to live in Bhola before moving to Dhaka andstudied up to class seven.

Halima (60, pseudonym), Nahar’s monther-in-law had a stroke four years ago and could no longer move her hands or legs, or eat anything but soft food. At first, she could go to restroom by herself, but later she deteriorated and could not go by herself and had to be helped there. Nahar did everything and even cleaned Halima whenever required. While Halima was alive, she had bed sores which required regular dressing. Fortunately, Nahar was taught by the palliative care assistants from “Momotamoy Korail” (a palliative care service centre run by Bangabandhu Sheikh Mujib Medical University with the help of Worldwide Hospice Palliative Care Alliance inside Korail slum) how to properly clean and dress the wound.

While conversing with her, we asked her what she felt about taking care of Halima who was completely bed-bound. Initially she did not say much, but at one point she did admit that when she was pregnant she felt irritated to take care of her sick mother-in-law. She was at the beck and call of Halima, even when she was pregnant, and that bothered her.

“Sometimes I felt annoyed when she used to call me during my household chores.”

She had to do all the household chores as well as taking care of Halima. In the midst of this, she neglected her own health as she did not get any ante-natal check-ups, but only had one ultrasonogram done. On probing, she replied she could not go for check-up because there was no one at her home who could take her there.

“I did things all by myself, took care of my mother-in-law and did the household chores. My husband did not help me much. I did everything even when I was not feeling well. I did not go to any doctor, just had an ultrasono… I had no one to take me. My husband does not know about these things.”

She used to sleep on the floor with her husband while her mother-in-law slept on the bed with her father-in-law. She consoled herself saying that if it was her mother, she would have done the same. She did not share these things with anyone in fear of rumors or hurting her relatives. On asking whether she spent time with her husband she said that her husband did not take her anywhere when her mother-in-law was alive. Sometimes when she felt too bad she cried, but still didn’t tell anyone. In her own words –

“I used to cry sometimes and wonder why my parents married me off here.”

The day Halima died, the family members had an intuition that may be she will pass away soon, and called all of her daughters and siblings. Her daughter and brother came to see her. Nahar said that when Halima slowly started to close her eyes, the family members knew that it was time.

After Halima died, Nahar’s life changed somewhat. She doesn’t need to clean her now, can give more time to her child. She also can spend more time with her husband. She feels that she has done what she could for Halima, and no one can say otherwise.

Nahar’s story shows the emotional burden and inner conflict that has its toll on a person’s psych when they are taking care of dying patients. Community-based approach to palliative care can be a way forward in dealing with issues. In a country like Bangladesh where palliative care services are not available for all socioeconomic groups, a community-based approach can prove to be an effective solution. Traditionally in Bangladesh, caring for dying relatives is done by other close family members like in the case of Halima and her daughter-in-law Nahar. Sensitizing those around the patient and counseling them as well can help to ease the trauma caused by losing a family member as well as the demands that come from caring for them. Therefore, by training family members on the proper care of their dying relatives and providing bereavement support after the patient passes away by using palliative care assistants like those from Momotamoy Korail centre, these individuals and their family members can be allowed to deal with what is happening with dignity. Community engagement is crucial for greater understanding of the importance of palliative care among the general public.

This blog was written by Puspita Hossain, Research Associate at BRAC JPGSPH.