Ananda’s Story

A Day in the Life of a Rachel House Nurse – by Jasmine Cross

 

It takes Susi two and a half hours to reach Rachel House’s satellite in North Jakarta. A long, tiring journey by motorbike through the heavily congested streets of Jakarta, but it is essential. Her motorbike provides a lifeline to her patients. It’s the only way she can pass through the extremely narrow streets of the slums of North Jakarta. This is where a large percentage of Jakarta’s poor live, in haphazard, crowded housing. Most of her patients are young children with HIV due to the large number of drug addicts and high level of prostitution within the area. For Susi’s own safety it’s important that she blends into her surroundings, because she puts herself at risk each time she enters the slums.

After arriving safely at her satellite Susi confirms with the Aunt of one of her patients that the pre-arranged visit can still go ahead. Ananda was only six years old when he was diagnosed with HIV. Both his parents died before he reached his first birthday, victims of HIV, which they had unwillingly passed on to their son, leaving him in the care of his mother’s sister. Two months before his seventh birthday Ananda became increasingly unwell, and was shortly diagnosed with HIV. The severity of his condition meant that he was immediately admitted into hospital so that his symptoms could be monitored. The whole experience was incredibly traumatising, separated from his family, in immense pain and discomfort from the medical treatments. Ananda wanted to be back with his family, in the house that consisted of one room where he could be taken care of by his Aunt. In the end after seeing how much distress Ananda was in his wish was granted and he was allowed to return home.

On the phone Susi checks Ananda’s symptoms, assessing the medicine he might need and what might make him more comfortable, before negotiating her way through the maze of intricate alleyways that lead to his Aunt’s house. The slum houses are amassed closely together in order to maximise space. Women and children stare at Susi as she makes her way down the enclosed alleyway leading to Ananda’s house.

Ananda is fortunate that his Aunt can take good care of him. Some families have to be coaxed into taking the appropriate care of their patients. Their impoverished situation means that these families have no time, energy or money to support a dying child when they have healthy children who need to be fed. The needs of these severely ill children drain them emotionally, physically and financially. However the nurses are patient, they listen to these families, help and support them wherever they can, easing their burdens. The nurses make sure these children receive the right medication and care that they need. Supporting and counselling the entire family, ready to receive a call 24 hours from a grieving parent or worried caregiver.

Ananda’s Aunt loves him as if he was her own son, but even she is not immune to how tiring it is being the sole caregiver, especially as she has two children herself. The family must survive on the little her husband makes as a cleaner in a Government office. Arriving at their small house Susi greets his Aunt warmly and is ushered into the house. Ananda lies facing the wall. He doesn’t turn over to greet Susi. He barely smiles. He is a living skeleton, with large, dull eyes. It is a struggle for him to talk now. Too much energy wasted. He just concentrates on breathing. ‘His spirit is low and he won’t talk anymore, I think he’s getting worse’ says his Aunt. Susi listens to her and simply nods. She then gently gives Ananda a physical assessment. It’s not good. Ananda’s condition is getting worse and Susi is concerned. Carefully she explains to his Aunt how to make him more comfortable, and stresses the importance of feeding him a little and often, his body weight is so low, and she’s worried about dehydration. He’s slightly feverish too, so she suggests he needs cold compresses, and shows his Aunt how this is best done.

“Ananda, how are you feeling?” Susi asks him smiling sweetly at the child who lies despondently, staring at the wall. Susi tries again, but the silence deepens. She reaches for his hand and squeezes it. “I’m here for you” She tells him, “even if you don’t talk, I’m still here for you.” There is silence again for a few minutes. “I just want to die.” Ananda whispers. He sounds resolute, as though he has made this decision long ago.

“Why do you want to die?” Susi asks him quietly, still holding onto his hand and stroking it gently.

“Because I will get to see my mum and dad again…because there will be no more pain.” He says, and a spark of hope flashes in his eyes. “I know they will be so happy to see you.” Susi says, “What do you think
Heaven will be like?” Ananda’s eyes light up as he describes how he will live in a beautiful house with his parents, and that they will be happy forever. “Because no one can be sad in heaven…or sick” he adds as an after thought. It is these moments, these precious exchanges with her patients that give Susi her greatest sense of fulfilment. It is in these instances she knows that her job makes a difference; the lives of the children she has touched will have made their last days, weeks or months on earth easier. Her gentle, compassionate nature, and ability to listen to the fears or wishes of her patients who are facing their own mortality for the first time in their lives and who are perhaps too young to comprehend what it means. She is there to help them all; the ones who fight the knowledge that they are dying and the ones who accept it are treated alike, with great compassion and kindness.

After making Ananda as comfortable as she can and administering the medicine to his Aunt, Susi heads back to her satellite. Once there she writes a report on Ananda’s physical condition and will contact his primary doctor and let them know her assessment of the patient, what drugs she has given him and his current symptoms. After this, if she doesn’t have another patient to see Susi will go to a new Primary Health Care facility in North Jakarta. She will speak to the Doctors who work there, promoting Rachel House and explaining the importance of palliative care, so that if a patient is brought in with HIV or cancer they can refer the patient to Rachel House. Slowly but surely Susi is targeting the different areas of North Jakarta, forging links that will bring in new patients for her to look after.

Sometimes she will receive a grieving mother at the satellite, and so Susi will listen to their tears of grief, to their pain and anguish giving them what advice and help she can. Most of these women are also suffering from HIV too. With two young daughters at home Susi can more than sympathise with their immense grief. ‘Sometimes we are down but we must be strong. My job is important because I can make the children happy.’ She says. She emphasises the importance of sharing her experience with the other nurses within Rachel House, Alisda, Rina, and Milda, together they listen to each other and share their experiences and feelings. They know the job they do is so important and affects the lives of so many children and families.

Without all of their efforts these children would be dying in pain and discomfort with no one to listen to their fears and worries, with no way of coping with their own mortality, and within families who are unable to understand the needs of their dying children. The work they do is inspiring because they face many difficulties due to the stigma HIV holds within Indonesia. They must constantly work with sick, malnourished children, in areas of extreme poverty where it is a struggle for most families to eat one meal a day. Their strength and courage, and their unconditional love for these children is the light that keeps them going.