What happens after treatment stops? Palliative Care in Indonesia

On July 24, I accompanied Rachel House on a home visit to one of its patients – a 7-year-old boy who has leukemia and relapsed just before he was supposed to start the new school year.

After visiting Rachel House’s office to meet the staff and nurses, we were off to the young patient’s grandmother’s home where he and his mother stay.  They stay here so that he can be closer to treatment and support.  The mother and grandmother welcomed us with warm, sincere smiles. The patient had been improving until recently.

When we arrived, the nurse discussed the patient’s symptoms with the mom, brought him a new backpack since he was hoping to return to school, and consulted the mother on his oral chemotherapy. Because some families do not know how to access Indonesia’s free health care, the staff of Rachel house assists and guides them in the process from registration to accessing it.  Families supported in this community are laborers, have no jobs, supported by their families, or ojek drivers (motorbike taxis).  Palliative care is not well-known in the country, and people do not know what to do when their loved ones are sent home from the hospital to die. The families often don’t have emotional support, counseling, or even explanations on what will happen to the patient before he or she passes away. Rachel House was created to fill that need and support these families until the end.

As I observed Rachel House staff with the family they were not like outsiders stepping in to advise on the family’s lives, Rachel House was a part of the family – connecting on a personal level instead of via a chart. One of the nurses explained that this is why she joined Rachel House. She said that working in a hospital, one would feel a bit separated since the charts dictated everything. Here she can support the family on an emotional level and connect more.

After the visit, we parted with the family and the grandmother had tears. She said she was so happy to have the support of the nurses coming to their home. Her grandson was weak and could rest at home. Rachel House hopes to be able to provide this kind of support for other diseases in addition to cancer and HIV. Additionally, they hope to recruit new nurses while expanding awareness and understanding of palliative care in Indonesia.  This is one of those organizations that remind me of why I began to work in the non-profit and foundation field. It is meeting needs that are not being met, and supporting those that have fallen through the cracks to improve the care and basic rights of humanity.

Learn more about and support the work of Rachel House here: http://www.globalgiving.org/projects/rachel-house-pediatric-hospice-in-indonesia-cancer-hiv/

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A hand-up, not hand-outs for youth and families in Thailand

I was able to visit 2 organizations meeting needs of those in the Bangkok community that are disadvantaged or are affected in some way by HIV – both organizations give a hand up not a hand out. The first organization, Siam-Care, provides economic and educational opportunities while the second organization I met with, Step Ahead, provides business training, personal development, and micro-loans for existing entrepreneurs.

At Siam-Care I met 2 young women, one is studying finance and the other an international law student. One of the young women had been brought in at 12 years old for support by her “adopted” mother because she lost family from HIV/AIDS. She now financially supports her siblings. The other young woman was an orphan and studies law because she is interested in law and justice. We discussed that if they were not at Siam-Care they would be at higher risk for trafficking and or abusive work situations. Many youth migrate uninformed to large cities like Bangkok to support their families or themselves if they don’t have families. With the support of Siam-Care they can stay in school, receive education and support, and aim for professional careers like accounting, medicine, and law. The last youth I met was a young man that a relative brought in because his mom died when he was 5 of HIV and his father passed away when he was 2. He is now in school, part time working at KFC, and studying to be a computer programmer. He also is interested in giving back and volunteering – he even asked about volunteering for GlobalGiving!

The issue is that it is free to “sit in a classroom” but families have to pay for everything else including books, uniforms, and even specific haircuts. If the students don’t have this, they can’t attend.

Step Ahead is located near a slum community of Bangkok, Khlong Toei. After meeting staff and seeing the gorgeous purses that women are able to make with Step Ahead in order to earn income, I accompanied the founder, John, and a staff member to meet those receiving mentoring, training, and microloans. Additionally, Step Ahead hosts basketball and event days for local youth.

Working through local districts, Step Ahead first hosted meetings to reach out to the community. In the slums, people either live in tall government projects that have about 250 rooms and about 1500 people per building or they live in shacks between buildings through winding alleys. These homes are made from bits and pieces of scrap metals and wood all stacked on top and in between each other. Walking through Khlong Toei, John explained that the situation is much better than it was before. A few years ago I would have seen sewage-filled alleys. The first Step Ahead micro-entrepreneur we came across was at her stand selling confectionary items.  She said she uses the loans to buy “stuff to sell”. Another woman has a restaurant serving food through a window facing the alley. Finally, we came to a family business close to a pond turned into a sewage and trash dump.  Outside of their home were bathtubs filled with water and chickens’ feet. This family processes chicken feet to be sold at the market.  The family told us that the helpers (who come to de-bone the feet) and the buyers have not been coming as regularly – and they did not know why. One member of the family was a single dad of 3 kids.

We continued to walk through the community meeting local citizens and observing their daily lives.  Because of the support of Step Ahead the local citizens can continue to run their businesses and not have to go to loan sharks that charge high interest rates while emotionally and physically bullying their loaners if money is not repaid back on time. Despite difficult situations, economic instability, and families affected by HIV/AIDS everyone was hopeful, inspiring, and committed to making theirs’ and others’ situations better.

Find out more at: Step Ahead and Support 100 Thai Prisoners And Families With HIV