Help bring Palliative Care to Indonesia's children

by Yayasan Rumah Rachel ('Rachel House')
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Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
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

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Triya* was enjoying a big bowl of bakso (meatball soup) when nurse Ria from Rachel House recently visited her home in South Jakarta. Simply seeing Triya eating a full bowl of bakso like any other eight-year-old girl brought a smile to Ria’s face and to that of Triya’s grandmother. This is because it demonstrates that Triya’s appetite is returning and her condition is stabilizing after several worrying months for all who care for this precious little girl.

Triya has been living with a serious illness since she was born – an illness that has had a tragic impact on her entire family. In 2018 alone, she lost her father, her mother and her little brother to the same deadly disease. Luckily for Triya, however, she has an angelic grandmother who showers her with love and cares for her as best as she can.

When there is hope, there is a way

At first her grandmother feared that the illness, combined with the sadness of the tragic loss would be too much to bear for this little girl. “I thought Triya would never survive, she was so skinny, looking very pale and there seemed no hope,” her grandmother said.

To be the sole caregiver of a beloved granddaughter with a serious illness is not easy. “Most of the time I don’t have the money to pay for the transportation cost to get Triya to her specialist appointments. I place our hopes every month on my youngest son to support the expenses. But when we are out of money, I walk. No matter how far the distance is, I will keep walking and carry Triya on my back to get to the doctor. And I always find a way to pay for the expenses for her medication. Before her parents died, they asked me to take care of her. I have made a promise to them that I hold as a sacred responsibility. I will hold my promise until the end of my life,” Triya’s grandmother said.

Since Triya was admitted to Rachel House’s service five months ago, nurse Ria has been working tirelessly to stabilize Triya’s condition and to support her grandmother. “The first thing we needed to do was to address Triya’s malnutrition and her problems with swallowing, so she can start eating properly and to take her medicines,” said Ria. “We made sure that Triya’s grandmother always had access to the medicines and that Triya was taking these on a regular basis, which is essential for keeping her disease at bay. The focus on her care, and the partnership with Triya’s grandmother is now starting to make a real difference to Triya’s health and hopefully her prognosis.” said Ria.

The joy of Friendship

Once she gets over her initial shyness, Triya is bubbly little girl. She loves to play hide and seek and adores her Disney’s princess coloring.

Triya enjoys going to school and loves being with her friends.  However, due to a skin rash that has intensified due to her illness, she has been reluctant to go to school lately. She said her friends had become too frightened to play with her.

Nurse Ria supported Triya’s grandmother to address these problems by consulting with a skin specialist, and worked with the family to improve the hygiene conditions in their tiny home. On our most recent visit, Triya’s skin condition has shown significant improvement, and she is hopeful and so excited to be able to go back to school again soon.

Children like Triya, orphaned and left under the care often only by a grandmother, tells the devastating tale of many of Rachel House’s patients. Equipped with the clinical skills to support the child and family, and love in their hearts to care for the plight of these children, our nurses count their blessings for the faithful support and generosity of spirit of our supporters and donors. We thank you for walking this journey with us – so that every child can live with the joy and dignity that they deserve.

* pseudonym

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In a tiny one-room home in central Jakarta, a young girl celebrates a very special 5th birthday. On this happy day, little Diana* is surrounded by several generations of her family and some of the nurses from Rachel House; cuddling her new friend with joy and glee - a giant pink Hello Kitty that is almost as big as she is. It is a wonderfully happy celebration for Diana, and for all who have worked hard to get Diana to this day.

Diana has been living with a serious illness since she was born. Plagued with chronic diarrhea, severe malnutrition and grave symptoms that threatened her life. Every single day with a smile on her face is a day for celebration.

For many years her parents have struggled to care for her in the midst of their own personal challenges. With her parents rarely present at home, doctor’s instructions on the best care for Diana were often ignored causing her health to continue to deteriorate.

When Diana was referred to Rachel House six months ago, her challenging family circumstances were highlighted by her primary doctor as the main factor for treatment failure. Dadan, Rachel House’s nurse assigned to care for her, was determined to not only stabilise Diana’s condition, but also to help her parents provide better care for their daughter into the future.

At first, this was not an easy task. However, with Dadan’s patient guidance and encouragement, Diana’s mother has learned to prioritize Diana’s health in their lives. She now ensures the availability of healthy and nutritious meals for Diana, the discipline administering of Diana’s medicines, and prioritise the regular visits to the doctor.

Now that her health is improving, Diana’s appetite has also returned with awesome vengeance. She has developed into a ‘milkaholic’, drinking almost one litre of milk a day! In this, the family is grateful for the loving support of Rachel House’s faithful donors. Diana’s mother also makes certain that she eats her (big bowl) rice, meatballs and a banana daily. Diana is now learning to say one or two words, as well as beginning to crawl. She is wonderfully engaging when somebody talks to her, mumbling the few words in her repertoire and trying her very best to communicate.

Knowing that Diana is a huge fan of Hello Kitty, on this special day of her 5th birthday, Dadan and a few of Rachel House’s team came bearing a beautiful Hello Kitty cake (baked lovingly by our faithful and generous friend, Tiar), and a giant Hello Kitty doll that brought lots of smiles and happiness to this precious little girl.

As a child living with a serious illness, and in a family where putting food on the table is a real challenge, Diana will continue to need constant care and attention. But with the Rachel House team, and our incredibly generous donors, walking by her side to support her and her family, she now has the support she needs.

*not her real name

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Reaching the home of five-year-old Caca (not her real name) is a challenge. To enter this kampung (high-density, low-income urban settlement) in East Jakarta, you need to crouch down to pass under a wall. Having successfully navigated this first obstacle, you must then thread your way carefully along narrow, muddy paths beside canals that are fetid in the dry season and overflowing in the monsoons, before finally reaching Caca’s home. 

The gleaming skyscrapers of Jakarta are visible on the skyline; only a short distance, but a world away. Many of the families in this kampung are trash pickers (people who collect trash to find valuable goods for sale or simply even food to eat), whose informal waste processing helps keep Jakarta’s streets and skyscrapers clean at the expense of their own. 

Caca, who was born with HIV and who lost both of parents to the disease, lives with her ‘Nenek’ (grandmother) —and her grandfather. Caca’s grandfather is a trash picker, and her grandma works all day peeling shallots, earning just 500,00 (USD $3.5) for peeling 30 kilos. The family’s earnings are meagre, and the work is hard and unrelenting. But despite their financial difficulties, they make sure that Caca gets the treatment she needs and take care of her as best as they can. The community in this kampung also cares for Caca, looking after her and sometimes even providing her with food when her grandparents are not able. 

At least once every week, nurse Ria from Rachel House visits Caca for a check-up, Because of Caca’s HIV – and certainly not helped by the environment that she lives in – Caca’s immune system is weakened, meaning that Caca has pulmonary tuberculosis and is more likely to pick up other illnesses. Whenever she visits, nurse Ria often brings infant milk formula and other things Caca might need. Sometimes Ria will also accompany Caca and her grandmother when they need to go to a clinic or hospital for a specialist appointment or to pick up prescription medicines. 

As well as checking Caca’s symptom and her progress, Ria also spends a lot of time making sure that Caca’s grandmother can properly care for her. Health literacy is almost non-existent in this part of Jakarta, and nurse Ria patiently teaches Caca’s grandmother how to administer and safely store Caca’s medication, and to make sure that it never runs out. With each visit, Caca’s grandmother seems to be getting better and better at this.

Besides helping to monitor and improve Caca’s physical health, Nurse Ria is there to improve Caca’s life emotionally and socially. She is also there for Caca’s grandmother to share her worries, confusions, sadness, and fear, things that she may have no one outside the family to speak to about.

Thanks to the support of GlobalGiving donors, nurse Ria and the Rachel House team have been able to provide Caca with the care she has desperately needed. Caca’s illness has now stabilised and her health has been (slowly) improving. Caca used to throw a lot of tantrums when nurse Ria first met her – most likely because of being sick all of the time – but now behaves more respectfully towards strangers and her grandmother.  Additionally,  Caca even has a real mattress to sleep on for the first time in her life, thanks to the generosity of the furniture company JYSK.

Best of all, Caca has even been able to return to school and to play with her friends like a normal girl. Nurse Ria’s support and aid to Caca, and her encouragement to Caca’s grandmother, helps Caca to live a life a little girl her age should have.

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Vini* is an 11-year-old girl living with HIV.  She weighs just 12kg, less than half of the average of 28kg for a girl her age. Vini has been plagued with severe malnutrition due to her illness, which compromises her immune system. While both her parents have died, Vini receives a wonderful dose of love and devotion from her grandparents with whom she now lives. She is particularly attached to her grandfather, “Pak Salim*”, who cherishes her and the time they spend together.

On the day I first visited Vini, with nurse Dadan from Rachel House, we found her totally engrossed in watching cartoons on TV. It was wonderful to watch nurse Dadan playing and engaging with Vini while he prepared her for the routine medical assessment. Pak Salim, who had just returned home for lunch from his construction job, sat down with us and began to share Vini’s story.

Pak Salim told of Vini’s childhood, how when she was about one and a half years old, her mother had died. Due to this misfortune and her father’s neglect, Vini has been cared for by her grandparents since she was a baby. Pak Salim remembered that in fact Vini had been found with health issues even while she was still in her mother’s womb and was born with lung conditions.

Earlier this year, Vini’s health was declining dangerously for no apparent reason, so Pak Salim decided to bring her to the hospital. It was here that Vini was first diagnosed with HIV.  Left undiagnosed and untreated for all these years, the disease had been wreaking havoc on Vini’s little body with the compromised immune system. She was also dangerously underweight most of her life.

Pak Salam continued by sharing about how Vini’s situation had begun to improve since the diagnosis when Vini was referred to Rachel House’s homecare service. He shared how much of a support the Rachel House nursing team has begun for Vini and the family.

Nurse Dadan has also noticed significant improvement in Vini over the past months as her illness has stablised, commenting that “although Vini’s weight hasn’t changed, she appears to be looking more fit and able to enjoy playing like children should.”

It is clear that Pak Salim loves his granddaughter and is very proud of her. During our visit, he kept asking Vini to show off several of the many drawings that she has done. He also mentioned with pride that, although Vini often feels tired, she has a fiery spirit that will not stop her from getting back up so that she can go out and play with her friends.

Nurse Dadan and Pak Salim then begun to share a story about Vini’s recent birthday. When Vini was in the hospital not long before her birthday, her biggest wish was to have a big birthday celebration at home with her family and friends. So when she was discharged from the hospital, the Rachel House team helped her grandparents throw a birthday party. It ended up being a very big one because most of Vini’s neighbours and friends were also invited!

Despite having very little and living in a house that Pak Salim had built himself on someone else’s land, their hospitality and generosity is heart-warming. The constant food that was offered to us by Vini’s grandmother; Pak Salim’s face that radiated such gentleness, and his willingness and dedication to care for his grandchild; and Vini’s playfulness despite her sickness, can only make one feel welcome in their humble, yet awe-inspiring, household.

Pak Salim and his wife will continue to devote themselves to love and care for Vini. It's thanks to the support from donors like you that Dadan and the team at Rachel House are able to walk alongside them on these bumpy roads. 

* All names have been changed

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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$101,221 raised of $120,000 goal
 
689 donations
$18,779 to go
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