Adi’s Story

Patient name  Adi
Age  18 years old
Admission date  31 August 2008

Patient history

Adi was taken ill in August 2007 with loss of appetite, dry throat and tuberculosis. Laboratory tests of the blood revealed abnormalities with eventual diagnosis of acute myeloid leukemia.

In February 2008, Adi began chemotherapy treatment at Dharmais National Cancer Centre (“RSKD”). Unfortunately, the treatment was not successful in keeping the cancer at bay.

At Rachel House

On Sunday, 31st August, a social worker and a nurse from Rachel House visited Adi’s home to conduct an initial assessment. We found Adi in a semi-comatose state, lying in the middle of the living room of a small and humble home, cared for solely by Yumi, Adi’s 20-year old sister.

We discovered that Adi had been blind since 10th August, a day before the surgery he had undergone to drain the fluid from the brain area at RSPAD. Post surgery, he spent 3 weeks in the hospital before being sent home on 29th August with little hope of living beyond 1 week. At home, Adi was being fed through a feeding tube (‘NGT”), which by the time we arrived, had been blocked by food items which Yumi did not know how to flush out. During the first visit, we found other complications such as the high temperature (from possible infections), swollen legs and the need for adult-sized pampers.

The journey with Adi in the following few weeks taught us many valuable lessons, all of which have led us to closely review and re-evaluate the premises of our services.

Caregiver limitation
Although we tried to equip Yumi with as much caregiver’s knowledge as possible, the fact that she was the sole caregiver made it difficult for her to execute the tasks in a way that would provide Adi with the level of care he needed in order not to suffer. For example, Yumi was not able to move Adi as often as he would have needed to be moved in order to avoid bedsores developing (by the time he died, Adi had open bedsores and wounds on his back and around the spine area, which led to other more serious complications such as infections, fever etc.);

Limited facility at home
As fluid was building up in Adi’s chest in his final days, we brought an electrically powered suction tube to the house to drain the fluid. Unfortunately, due to the low voltage available in the house, we were not able to perform the procedure.

Total absence of help from neighbours
A factor that we never expected to witness was the absolute absence of assistance from the neighbours. In fact, Yumi and her family were shunned by them because of Adi’s illness. Was this due to fear borne out of a lack of understanding of the

Last but not least, accessibility
Adi’s home is 2 hours and 45 minutes away from central Jakarta. It is a huge distance to cover given our limited resources (manpower etc). We repeatedly found ourselves struggling with having to arrange for Adi to be taken to the nearest hospital in Bogor (on potholed roads) for the change of NGT and catheter, for suction of fluid from his chest and other complications that we could not manage, either due to the distance or due to operational license limitations.

Adi’s last days & the family’s journey

Adi’s last days highlighted to us the serious need for an inpatient unit to cater for children like him who live too far away for our home care team to access, and those who live in too destitute a situation to allow for proper care to be administered in order that the process of death can be eased and made less horrifying for the patients, and for those around them.