A Light of Hope from the Community

 

In 2013, we began our efforts in bringing people together to care for those who are ill in their community. Today, Community Network in Palliative Care (CNPC) has spread across North Jakarta, where women, youth, community healthcare professionals, and Rachel House nurses work hand in hand to ensure that every child can enjoy their lives to the fullest. Watch Rachel House’s HOPE video above, a beautifully created by our friends at Anatman Pictures, to see these everyday heroes in action!

Sharif’s Last “Trip” to the Beach

Sharif was 2 years old when he was first diagnosed with Retinoblastoma. The cancer was first discovered on his right eye, and later spread to the left.

By the time Sharif was admitted to Rachel House for palliative care, he was 5 years old and had sadly lost his sight completely. Sharif’s oncologist referred him to Rachel House to help manage his symptoms at home, and to provide support for his mother so that they could both have quality time together for the remaining days of Sharif’s life.

Sharif was a very cheerful boy, who loved to talk to everyone around him, including Rachel House’s nurses. On one of the visits Rachel House’s nurses made to his home, Sharif begged to be taken to the beach. He said he wanted to feel the water on his hands.

Rachel House’s nurses quickly secured permission from Sharif’s oncologist for him to go on the excursion. With the help of a few volunteers, arrangements were made for this important trip to Ancol (a beach area in North Jakarta). Sharif was very excited, as were the nurses and the volunteers.

Sadly, shortly before the trip, Sharif’s condition deteriorated. The pain on his right eye became very severe, and he was readmitted to the hospital for a dose of palliative chemotherapy to relieve the pain. At the hospital, Sharif continued to plead relentlessly to be allowed to go to the beach, but of course this was no longer possible.

So Rachel House’s nurses and the volunteers engineered a solution to make Sharif’s wish come true. One of the nurses, Rina, brought a few goldfish from her own pond to the hospital in a Tupperware box. Ibu Lily, a volunteer at Rachel House, had fish-shaped pictures sewn on to a long sea-blue fabric (representing the ocean with fish) and hung them by his bed in the hospital.

Sharif was ecstatic! Every morning, as soon as he woke up, he would dip his little hand into the fish bowl to feel the fish in his hand and imagine himself on the beach. The fish and the “big blue sea” by his bed brought so much joy and smiles to Sharif, and to the nurses and the volunteers.

A few short days after, Sharif developed a very high fever that kept him firmly in bed with little energy to say hello to his fish.

One day, with his little voice Sharif whispered to his mom, “Ma, I am tired. I want to let go.”

His mother, who never left his bedside, replied, “Arif, please don’t worry about mama. Let go if you are tired. Mama will be alright.”

Sharif passed away peacefully in his mother’s arm the next day.

A Celebration of Life – A Story of Rama and Maulana

Rama’s situation was first revealed to us by Maulana, one of the participants at the CNPC training, and a member of the youth volunteer group (Karang Taruna).

Rama is a 12-year-old boy who was completely immobilized from neck down. The exact cause of his condition was never found and a diagnosis was never made. According to his parents, Rama had tripped and fell when he was 2 years old while learning to walk. Since that fateful fall, his development was seriously hindered. Rama’s father brought him to the hospital once, but was so disappointed with the service they received that he completely lost faith in modern medicine and never returned.

Rama’s mother is his main caregiver while his father works as a construction worker. Rama has a 10-year-old brother.

Unable to move, Rama spends his entire day in bed. When we first visited, he could hardly move his head; and when Rachel House’s nurse lifted him up for assessment, the contracture of his muscles made all movement difficult and a challenge for him. Rama’s speech is impaired, but thankfully his sight and hearing seem to be functioning well.

Rama was often troubled by constipation, fever, and a severe cough accompanied by a lot of phlegm largely caused by his immobility. It was a vicious cycle that the family was trapped in: The mother felt humiliated when she used to take Rama out. So in the end she stopped taking him out, leaving and locking Rama alone in the house often when she had to go out. This meant less and less opportunity for Rama to move, to exercise his limbs, complicating the contracture and compromising any chance of improvement.

In spite of all these, Rama has the most infectious smile that brightens up like the sunshine on a rainy day. Since our first visit, more and more smiles are being flashed, and we can see significant improvements, not only in the movement of his head, but the muscle contracture on his limbs has also eased to allow for more movement.

Equipped with the knowledge from the CNPC training, Maulana has become more sensitised to the condition of many children living with life-limiting and life-threatening illnesses in his community. Maulana now visits Rama almost everyday, even if it is just stopping by to say hello on his way home from work.

 

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Maulana (left) leading the morning assembly before Karang Taruna members begin the day’s work

 

Thanks to Maulana’s discovery, the local puskesmas (primary health clinic) has now been informed of Rama’s condition and the medical professionals from the puskesmas are now making a monthly visit to help monitor Rama’s condition. A weekly physiotherapy has also been organized to help ease the contracture of his limbs.

In August, accompanied by Maulana and with the help of many friends, Rama and his family spent their evening at the pasar malam nearby. It was Rama’s very first trip out of his house! He was beaming with smiles throughout the evening as he went round and round the pasar malam (amusement park) in the wheelchair, escorted by Maulana and his father. Rama even got to ride on the Ferris wheel – the three men looked very happy; and so were the friends who made the evening possible. A joyous celebration of life.

 

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Maulana (right) taking Rama and his father to ride the Ferris wheel

 

Palliative Care for All – A Milestone in Indonesia

April 2014 – Giving birth to the idea

In June 2014, we posted a story on GlobalGiving about the “Groundbreaking Roundtable Discussion” initiated by Rachel House to explore alternative pathways to introduce palliative care in the nursing curriculum in Indonesia. This is part of Rachel House’s hope of training a new generation of nurses equipped with palliative care and homecare skills, to ensure the availability and accessibility of palliative care in Indonesia. We are pleased to announce that on 1st October 2015, Rachel House launched its very first Clinic-in-a-Box training at University Padjadjaran (UNPAD) in Bandung. This is an important milestone in the development of palliative care in Indonesia. The 6-week course will equip nurses in home-based palliative care skills and financial literacy, to help empower the nurses to deliver palliative care to patients living with life-limiting conditions, including those at home. The pioneering batch of 22 participants comprises mainly lecturers from nursing faculties across West Java. With their hearts opened and passion awakened for palliative care, these lecturers will go on to touch the lives of many young nurses in Indonesia to encourage each to be the advocate for their patients.

 

Clinic-in-a-Box launched on 1 October 2015

 

Building skills & passion at Clinic-in-a-Box

 

Encouraging teamwork towards patient-centric care

Nurse – A Force for Change

On 21st of April every year, Indonesia celebrates Kartini Day, commemorating the birth in 1879 of Raden Ajeng Kartini – a pioneer in women’s rights and a champion for the emancipation of women, opening the first school for women in Indonesia.

This year, ConocoPhillips hosted a lunch to celebrate the courageous spirit of Kartini, and invited several outstanding women to share their accomplishments both at work and at home, in the hope of inspiring other women to aim high to break the glass ceilings.

Rachel House’s nurse, Rina, was invited as one of the speakers. A mother of three, Rina first dipped her toes into the world of palliative care in 2008, when a colleague introduced her to Rachel House. Her initial response at the time was, “What in the world is palliative care?” In the ensuing years, Rina’s insatiable thirst to learn – driven by her commitment and her heart’s calling to champion the children she served – quickly propelled her to become the clinical head of the pioneering children’s home-based palliative care team in Indonesia.

 

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The story of Rina’s exciting journey as a nurse-cum-mother-cum-wife captured the hearts of the audience, most of whom were women. “At first I intended to stay for only a few months,” Rina said, “but I fell in love with the children and here I am, still here after all these years.” Her role as the Nurse Coordinator requires tremendous dedication not only in ensuring that her patients and their families receive the best care possible, she is also in charge of supervising and training the younger nurses, inspiring them to go the extra distance to serve their patients; challenging each of them to open their hearts and be the voice for their patients who are amongst the most forgotten and neglected in the community.

A significant part of Rina’s work is in disseminating palliative care knowledge to medical professionals across the health system in Indonesia, working hard to ensure the availability and accessibility of palliative care for all children in Indonesia.

When asked how she balanced the demands of her family and her work, Rina highlighted the importance of support from others. “Both at home and at work, collaboration is key. At home, I work with my husband to care for our children and build our home. In the field, I work with the community, hospitals, primary care centers, and other not-for-profit to provide the optimal care for our patients and their families.”

Her roles are wide-ranging and her duties are demanding, Rina admitted. “But I would not change it for the world.”

 

The Voice of Youth in Advocating for Pediatric Palliative Care

Students of Sekolah Pelita Harapan (Pelita Harapan School or “SPH”) in Karawaci, Jakarta recently participated in 30 Hour Famine, an event where the students fasted for 30 hours to get a glimpse of what it was like to be without a basic necessity. The 30 Hour Famine is a World Vision program that seeks to unite youths around the world to raise awareness about the plight of children who live in circumstances less fortunate than themselves in the hope of eradicating poverty.

For the students at SPH, this year’s focus was children living with HIV/AIDS and Rachel House was invited to speak about the need for palliative care for children in Indonesia in general, and for children living with HIV/AIDS in particular.

 

 

Rachel House shared the current initiatives that are being implemented to deliver care to children living with HIV/AIDS and other life-limiting conditions, and presented the challenges that lay ahead in a country where palliative care is not yet an integral part of Indonesia’s healthcare plan. The students demonstrated a keen interest, asking a host of questions about Rachel House’s advocacy plans at the local and national level to ensure the right of children to live with dignity and without pain can be achieved.

At the end of the presentation, Rachel House facilitated a group activity to encourage the students to think about ways to raise awareness for palliative care in their community and how they can lend their hands to help alleviate the suffering of children living with life-limiting conditions. Divided into groups of three, the students were asked several questions based on a scenario about a young boy living with HIV.

“If you were his neighbor, what could you do as an individual, to provide support to this boy and his family?”

“As a community, how could you provide support to this boy and his family?”

“As a policy maker, what could you do to ensure palliative care is provided for this boy and his family?”

 

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The responses received from the students were astounding. They came up with inspiring ways in which individuals, communities and leaders can collaborate to ensure palliative care needs for children and their families are met. Listening to their ideas confirmed our belief in the power of the voice of youth to advocate for palliative care in Indonesia.

Rachel House is inspired by the young people with a vision to create a better place for children who are marginalized; we admire their passion, enthusiasm and their willingness to contribute towards a better world. We are grateful to the students of SPH for their fundraising efforts and support for the children and families of Rachel House.

 

Karsini – Pillar of Her Community

What do we imagine we’ll be doing in our fifties or sixties? When our knees may ache when we walk and our back struggle to straighten when getting up. Will we still be buzzing around the city with the same verve we do now in our youth? Or will we have slowed our pace, perhaps choose less work with more days off and turn in earlier in the evening?

Will we have the strength to opt for the path of Ibu* Karsini, a community volunteer in a dusty neighbourhood of North Jakarta, who continues to help those who are ill in her community with tireless zeal?

On most days, Ibu Karsini’s morning would start with the usual commotion that happens in an average household. Awake at dawn, she cleans the house and prepares breakfast for her husband, her six children and their respective spouse, and her grandchildren. Once her family and home are taken care of, she departs from her modest house and goes off to tend to her other families –the ones that may not be related to her by blood, but whom she treats with the same compassion nonetheless.

One of those families is Tika, four years old and HIV positive. Her father has died long before she was born, and her mother passed away just after giving birth. For Tika, her aunt and uncle are her loving parents, and their five children her dearest brothers and sisters.

Like many children living with HIV whose immunity are compromised, Tika is ailed with malnutrition, lung tuberculosis, diarrhea, breathlessness, and a series of other persistent symptoms. Rachel House nurses visit weekly to manage her symptoms and to provide support for her family, to ensure that Tika is able to live with as much joy and dignity that she deserves even with her life-limiting conditions.

However, we cannot work alone. Ibu Kar (as the family calls her) stops by frequently to check on Tika. Ibu Kar has become Rachel House’s eyes and ears on the ground, keeping us updated on Tika’s health in between the nurses’ visits. Her over two decades of experience as a community volunteer has equipped her with the skills and a wealth of information that makes her a solid and reliable support for the family. When Tika develops a new symptom, Ibu Kar calls our nurses for advice. When Tika runs out of milk, she goes and finds someone who could help either donate money or milk supply. When Tika needs immediate medical attention, Ibu Kar swiftly arranges transportation to the hospital, accompanies the family and and help them navigate through the administrative maze; and does not leave until she is certain that Tika gets a bed in the overcrowded hospital. Even if that means waiting with Tika and the family until the wee hours of the morning.

Ibu Kar is not paid for her hard work, nor does she want to be. When asked why she continues to do what she does, she merely says, “It makes me happy.” There may be bags under her eyes from the lack of sleep, but the kindness in her countenance does not falter.

*”Ibu” is Indonesian for Mrs.

Ardi’s Story

One and a half years ago, a boy started to lose his ability to move.

One and a half years ago, the boy was diagnosed with HIV.

One and a half years ago, Rachel House was introduced to the boy.

His name is Ardi. He is seven years old. The HIV virus had compromised his immune system and caused neurologic complications. By the time Ardi was admitted to Rachel House, he had lost his ability to see, to hear, to speak, to eat and to walk. His limbs were contorted in awkward angles while he spent his days lying immobile in bed.

The “bed”, which is really a mattress, shared with his parents, his brother and his two sisters every night in a three-by-four rented room. Whenever our nurses visited, they would often find Ardi surrounded by his sisters, who continued to look after him in the most caring manner; they played and joked with him, and caringly wiped the saliva that had dribbled down his chin due to the facial paralysis.

Ardi’s parents continued to harbor high hopes for him. They believe he will one day regain mobility and return to school. He had been their pride and joy; one of the top students in his class, trophies and awards lined the walls of the small room.

He was referred to Rachel House to help manage the symptoms that had compromised his quality of life. Rachel House’s nurses supported Ardi’s parents with the essential skills and knowledge to ensure proper administering of medications, effective ways of managing Ardi’s feeding (nasogastric) tube, methods of easing his breathing (complicated by lung Tuberculosis), and physiotherapy exercises to help Ardi regain his strength and movement. All the big and small things that would help make Ardi’s days just a little bit easier.

But of course, the nurses’ work extends beyond just the patient. With other children to raise, Ardi’s mother needed emotional support, care and compassion; with the additional expense of Ardi’s treatment, his father had to work twice as hard to support the family. Our nurses became their friends, their trusted confidants, with whom they shared their grief and broken dreams.

A doctor once told Ardi’s parents that his paralysis was irreversible.

“But I have faith,” the father said. And that faith gave them courage. Physiotherapy was an arduous journey; with progress so slow it at times tested the father’s conviction. But little by little, Ardi’s conditions improved.

Today, Ardi is able to sit up on his own, and even stand up with support. He has regained most of his hearing and some of his sight; he is now able to watch television with his sisters, laugh at cartoon or some random celebrity gossip show. Ardi is a proof that with compassionate care and appropriate treatment, we can greatly improve the condition of children living with HIV. Being HIV-positive does not mean that these children will have to suffer from AIDS. And it definitely does not mean that they do not deserve to live life to the fullest surrounded by the people who love them.

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Make This Moment Count

In a 1-room house measuring 3 x 8 meters shared by 5 adults and 3 children, lay a little boy on a thin blanket on the floor. The room had no windows other than an open door that let in the hot dusty air, and sometimes a wandering rooster from the streets. For Sani, the skinny little boy lying on the floor right at the doorway, this is his whole universe – where he lies all day, every day.
 
 

At the age of just one, Sani lost his mother to HIV. When he was two, he was diagnosed with HIV with an obstructed bowel complication that resulted in a need for a colostomy.

When he was first admitted under Rachel House’s care, his father was still around and his grandfather was still alive. Both are no longer around, leaving him with his grandmother as his sole caregiver. She was the one who would nurse him through his endless fits of cough, his fever and breathlessness; the one who would change his colostomy bag ten times a day, and administer his medications – or at least tries to, as she constantly struggles to remember which medication to give and at what time.

Alone, caring for Sani and his 2 older siblings, his grandmother grows despondent. She tires easily, emotionally and physically. Sani begins to miss his doctor’s appointments at the hospital. A trip that would involve taking 4 changes of buses and a motorbike-taxi ride; a trip that not only takes 3 to 4 hours, but also one that would require funds that the Grandma no longer has. No appointments means no medications. No medications mean a compromised immune system that threatens Sani’s survival.

Rachel House’s nurse, Neng, who visits every week has watched the deterioration of the family condition with alarm. Sani has grown quiet since his father left. He has stopped eating, rejecting and throwing up food even with a feeding tube. Being close to his grandmother, Sani must also be sensing her worries.

Whenever he sees Neng enter the room, he will reach out with his feeble hand, motioning her and grunting for her to hold him. The grunt only stops when he feels her hand stroking his arm gently, while she speaks to him and his grandmother. Sani craves for a hug and a human touch – all of which is no longer available as his grandmother grows tired and preoccupied with financial worries. Neng sees the dark circles under the grandmother’s eyes and senses the burden she is carrying. So she listens to her stories and tells her what a remarkable job she’s doing.

“Come on, let’s care for Sani together,” Neng rallies behind her. “Let’s go to the hospital next week. I’ll meet you there so you won’t have to be alone,” Neng promised.

Determined to deliver the love and human touch that Sani craves for, however many remaining days he has left, Neng rallies the support of volunteers to take turns to visit – bringing him the love that he longs for.

For Sani, and many children like him, this may be all he will ever have; and so we make this moment count.

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Community Network in Palliative Care (“CNPC”) Training

Community-based volunteers play an essential role in reaching out to Jakarta’s marginalised population who are sick at home without access to basic healthcare. 

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In the month of March, coinciding with the International Women’s Day, Rachel House provided basic community-based palliative care training to 52 volunteers from the Kalibaru neighbourhood in North Jakarta. The majority of the volunteers are women who are selected based on their long-term commitment to helping others and their eagerness to learn. The training seeks to empower them with skills to provide care to the most vulnerable in their community, allowing them to act as the effective bridge between those requiring care at home and the Primary Health Centre (Puskesmas).
 

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The first day of the training brought the volunteers and the medical professionals from the Puskesmas together in a classroom in order to introduce the idea of collaboration to bring better accessibility to health assistance for those who are sick at home. 

 

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The ensuing two days of training included a structured, in-class discussion about the critical role of volunteers in helping bring health assistance to those at home. The prevalence of people living at home with chronic disease, HIV and cancer is on the rise in Indonesia and management of their needs in the community can be very complex and often inadequate. The volunteers learned how to identify those who need help; to assess and care for not only the physical needs, but also learn to identify and address the emotional, psychosocial and spiritual needs that are often just as great as the physical needs. They learned the importance of communication skills when working with people living with life limiting conditions, and the importance of collaboration in order to bring a holistic care to those in need. 
 

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The CNPC’s interactive method of teaching engaged the volunteers in activities such as patient case discussions, role-play and group work. The use of role-play emphasized the importance of communication during volunteer interaction with the patient and family in the community setting. Discussing health concerns, especially conditions which are life limiting, can be difficult and confronting. It was therefore essential that volunteers learned how to develop a trusting rapport with the patients and family and interact with great care, awareness and respect, while at the same time acknowledging their own emotions and values about end of life.

 

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After the in-class program, the volunteers were provided with the opportunity to take what they had learned and applied it in practice in the patient’s home. Rachel House Senior Nurses facilitated home visits where volunteers used what they have learned to holistically assess the needs of the patients and help them access the assistance they need in order to live comfortably at home. This in-field experience allowed the volunteers to see how they can be an effective bridge for these patients to access not only medical assistance from the Puskesmas but also other social and economic assistance when necessary. 

 

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After the completion of the training, volunteers felt more confident and expressed their enthusiasm and commitment in wanting to become community advocates for those who are ill at home. With the training provided by Rachel House they felt more prepared to reach out to their community to ensure suffering by those with life-limiting conditions can be alleviated as much as possible.

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Rachel House thanks the CNPC volunteers who have dedicated their time to provide care and support to their community. Engagement of volunteers is critical in Indonesia where the health system is still struggling due to the shortage of medical professionals. Trained volunteers can be the health extension workers that supplement the health care system and hopefully provide better accessibility and availability to health care for all in Indonesia.