Help bring Palliative Care to Indonesia's children

Little Lala* was being lovingly attended to by her grandmother “Popo”, when the team from Rachel House - nurse Fibrya and community health worker Risma – recently called to their home to check up on this sweet little girl.

Lala is a lovely 13-year-old girl, who has been living with a serious illness from the day she was born. Since then her mother and her Popo have filled their modest home with love, affection and tenderness for Lala, devoting themselves to her care. Tragedy struck in 2010, however, when Lala’s mother passed away. With Lala’s father not in the picture beyond paying for the roof over Lala’s head, it fell to Popo to nurse and care for Lala. Nine years later, Popo continues to provide this care, love and support to Lala every minute of every day.

Lala was referred to Rachel House in 2018, when as a result of her illness she developed encephalopathy (brain damage). This encephalopathy makes it almost impossible for Lala to move her body by herself, or to make herself understood by anyone apart from Popo who, after a lifetime of caring for her, understands her soft sighs and slight indications.

During the visit, Fibrya and Risma begin by having a conversation with Popo, checking in on Lala’s condition since their last visit, and on any issues that may have been raised via text messages and calls. Popo mentions that Lala has been in pain. Given her inability to communicate, assessing Lala's pain can be a challenge. Nurse Fibrya conducts a gentle but thorough physical examination from head to toe, while constantly checking for even the smallest reaction - such as a slightly hand/finger movement and facial expression – that would indicate pain or discomfort.

While Fibrya examines Lala, Risma continues the conversation with Popo, discussing the more practical support that Lala and Popo may need. These can include a supply of milk and diapers, transportation assistance to specialist appointments (thanks to our generous donors), or simply offering a listening ear for Popo’s problems, and at times, connecting Popo with other service providers. Risma, now known to Lala and trusted by Popo, sometimes steps in as a respite caregiver for Lala, allowing Popo to run errands or even just to enjoy some time on her own.

Popo lamented that she often receives pitiful glances and comments from her neighbours, especially when she takes Lala out. Her reply that “Nothing is difficult and pitiful for me because we live together and I can shower Lala with unconditional love every day” reminds Fibrya and Risma the immense love that this grandmother has for Lala, and her incredible courage.

After a visit which lasts almost two hours, the Rachel House team packed up to leave for another patient visit that day. Lala’s pain has been identified and medications administered. Popo is secured in the knowledge that the Rachel House team can be contacted at any time if the problem persists. . The team says goodbye to Lala, knowing that she is in the fierce and loving care of her strongest protector, her Popo, and that they will see her again very soon.

*All names have been changed to protect the privacy of our patients and their carers.

*Photos by Maggy Horhoruw