THEY WILL ASK thee as to what they should spend on others. Say: "Whatever of your wealth you spend shall [first] be for your parents, and for the near of kin, and the orphans, and the needy, and the wayfarer; and whatever good you do, verily, God has full knowledge thereof." - Al-Baqarah (2:215)

Thursday, 10 April 2014

Getting mother and daughter to go for treatment

When I brought Adila, the 13 year old HIV+ girl to the hospital last Monday, the person accompanying her was her 18 year old sister instead of her mother, although the mother was home when I went to fetch them.

When I got to the hospital, I was told by the nurses that the mother, Hamimah, simply refused to get treatment for herself, insisting that she was doing fine as it is. According to the staff nurse, no matter what they told her, Hamimah always came up with an answer. After that Hamimah wouldn’t even bring Adila to the hospital, I suppose to avoid getting more “lectures” from the nurses about getting treatment.

Luckily Adila’s older sisters (married and staying elsewhere) took over the responsibility of making sure Adila doesn’t miss her hospital appointments.

When I sent Adila and her sister home that day, Hamimah still didn’t seem too receptive. So I avoided going in to see her. I didn’t want to seem too pushy. I figured I needed to give her time and space, otherwise she’d avoid me altogether.

Then on Tuesday, I received a text message from Hamimah, telling me that Adila had another hospital appointment that day, this time with a different specialist. Hmmm… who did they think I was? A taxi driver providing them free service? If they had problems getting transport to bring the girl to the hospital, they could have at least informed me the day before instead of telling me on the day itself, just like calling a taxi. This time I told Hamimah I already had some other appointments and wasn’t able to help.

I then used a different approach, I asked whether Hamimah could bring her daughter to the hospital for future appointments if I could arrange for assistance with the taxi fares. It was only then that she admitted to me she couldn’t afford to pay for taxi fares and that she’d appreciate any help she could get.

To arrange for financial assistance, I needed more details. Great opportunity for me to visit them at home and personally speak to Hamimah face to face.

And so this morning, after giving a talk on HIV to a group of foreign workers at a factory here in Ipoh, I headed over to Hamimah’s house. Hamimah this time was a bit more receptive, knowing that I was there to help them, not to pester her to get treatment.

After getting all the details I needed about her 2 schooling children (Adila and her 11 year old sister), I had a heart to heart talk with Hamimah. She then opened up to me about her problems, including health problems, which, to her, had nothing to do with HIV. I managed to coax her to get treatment for her HIV, telling her that unless and until she gets treatment for HIV, it will be difficult for her to get better from her other health problems, mostly skin-related issues.

Hamimah then promised me that she’d accompany Adila to the hospital during her next appointment, see the doctor and try to get an appointment for herself as well.

I hope she will stick to her word and won’t change her mind.

Monday, 7 April 2014

Shopping for the children… and the new case of a 13 year old girl

I had initially wanted to take Dahlia & her children shopping for their needs during the recent 1 week school break, but Dahlia’s 2 year old son was down with pneumonia and had to be warded at the hospital. I had no choice but to postpone the shopping.

Once school reopened, it wasn’t practical for me to take them during weekdays, because although all 3 schooling children go to school in the morning, they’d usually be back home only around 3 pm, especially the ones in secondary school. With their home being about 1 hour drive from my place, I didn’t want to rush everything and end up coming home quite late.

So I finally decided to take them shopping last Saturday morning. When I arrived at their house circa 10 am, Dahlia was still hanging some clothes on the balcony. Apparently their place was affected by the water rationing, and they had no supply of water for the previous 2 days. Water was back on Saturday morning, and so she took the opportunity to wash all her children’s clothes immediately.

Her second son, 13, had some activities at school and so he couldn’t join us shopping. However, according to Dahlia, his size is just about the same as his 15 year old sister, including shoe size, and so there was no problem buying his schooling needs without him tagging along.

So off we went… Dahlia and her 8 month old daughter at the front seat while the other 4 children aged 15, 7, 4 and 2 at the back seat. Since it’s no longer “back-to-school” promotion season, it wasn’t practical taking them to a supermarket. So based on Dahlia’s recommendations (she knows better where to shop at that town), we went to a bazaar in town. More choices of sizes etc. But I definitely wasn’t able to simply swipe my debit card for payment, and so I needed lots of cash with me.

The first round of shopping involved buying school uniforms, shoes, and uniforms for co-curricular activities (Kadet Remaja for the 15 year old girl and Kadet Polis for the 13 year old boy). Total came up to slightly over RM800. And I had about RM800+ cash in hand.

Seeing that the younger 2 boys were becoming restless and thirsty, after putting all the stuff into the car, I brought them to a nearby stall for brunch (they hadn’t had breakfast even). Then, before proceeding with more shopping, I had to go to an ATM first to withdraw more cash. We went on to buy track bottoms and school bags before finally heading to a supermarket to buy milk and diapers for the younger 2 kids.

Total damages: RM1.2K. But all the 3 schooling children are under our sponsorship programme, and I’ve also got some donations to buy milk and diapers for the youngest 2, and so all those expenses are already covered for.

Meanwhile, the blood test results for all the children will be known later this month. Dahlia’s blood test, came back with a CD4 of 110, and so she needs to get started with ARV medication immediately. She does intend to look for a job, but I told her to hang on a little while longer after she starts her ARV, in case there are any side effects. Once she’s okay with the ARV, then there shouldn’t be any problem for her to find a job.

Today I was thinking of just staying at home to finish up my slides for this Thursday’s talk on HIV to a group of factory workers. But after coming back from my morning walk, a call came in from an unfamiliar number. A lady, who got my number from the staff nurse at the HIV clinic, sought my help to bring her 13 year HIV+ sister to the hospital for her appointment. Usually she’d bring her sister to the hospital herself, but today she couldn’t. The girl’s mother, who is +ve herself, simply refused to go to the hospital. If it was up to her, the girl would miss her hospital appointments and meds as well. That’s why the older sister (who is married and stays elsewhere) took over the responsibility. But while she could bring her younger sister for follow up appointments, there was nothing much she could do to coax her mother to do the same.

The nurses had already spoken to the mother, telling her that she’d need to come for appointments herself, but no matter what they told her, she insisted she doesn’t need to because she feels simply fine.

I think she’s still in denial…

Wednesday, 19 March 2014

The new case

As I was looking through my list of clients to assess their needs yesterday, a text message came in on my mobile phone, seeking help.

According to the sender of the message, Dahlia, she had been diagnosed hiv+ in addition to being a breast cancer survivor. Also in the message, she mentioned she had 8 children, 6 of them staying with her.

I immediately called back, trying to get further details, but she didn’t answer my call. I figured she may either be at her workplace, or at a public place where there was no privacy to talk. So I texted her, asking if I could visit her at home, and when would be the best time to visit. I was right, she was at a Klinik Kesihatan, and didn’t answer the call because she didn’t want the conversation to be heard by the people around her.

So this morning I went to visit Dahlia at her home. She and her children stay at a double-storey house, not usually affordable by the lower income group. But don’t get me wrong. The house belongs to her late father, and since her mother went into coma (after a stroke) a few years ago, nobody had been staying there. Her siblings stay elsewhere, and according to Dahlia, she doesn’t really have a good relationship with her siblings.

Dahlia herself had been staying in KL before this, and decided to move back to her parents’ home when she could no longer afford life in KL. Not really knowing what to do, she didn’t even get any referrals from Sg Buloh Hospital for her (and her baby’s) appointment to be transferred to Perak as well. Which was why she was at the Klinik Kesihatan, asking if she could continue her appointments nearer to home. She was told to go back to Sg Buloh Hospital to get a referral letter. But she can’t afford to go back to Sg Buloh, so I arranged for a fellow volunteer who’s a doctor at the general hospital in the town she’s staying in now, to meet her and arrange for a referral letter. After all, Dahlia had not started with HAART yet, so I hope it won’t be much of a problem.

Initially I thought Dahlia got my number from the Buddies brochure, but when I asked her, she said she got my number from someone else. You see, her friends, knowing that Dahlia is a breast cancer survivor, gave her a number of a Datin in another organisation. The Datin did immediately used her contacts in the Welfare Dept, asking them to assess this case. That was immediately done and the welfare department will be giving Dahlia a monthly assistance of RM450 per month, in addition to the immediate relief given to her during the visit.

When the Datin found out that Dahlia was also HIV+, she gave Dahlia my number and told her to contact me. So while I was chatting with Dahlia today, a call came in, and whaddaya know, it was the Datin, who thought she’d call me to inform me that she had given my number to an HIV+ lady needing help. The Datin was surprised when I told her I was at Dahlia’s house at that very moment.

Anyway, back to Dahlia’s story. She has 8 children from 2 marriages. The eldest is 15 years old, and the youngest only 7 months old. 3 children from the first marriage, which ended in a divorce, and 1 of the 3 children is being taken care of by Dahlia’s ex-husband. After the divorce, Dahlia married another guy, but the marriage took place in Thailand, and from what I could understand, it was never registered in Malaysia. Last year, the 2nd husband left Dahlia just like that, together with one of their children, before the youngest one was even born.

So now, without any fixed income, Dahlia needs to take care of 6 children. While she doesn’t have to pay rental for the house, she still needs money for water, electricity, and most importantly, food. To go out and work, Dahlia can only do so during long school holidays when her older children are at home. Otherwise, there’d be nobody at home to take care of the 3 younger children.

The 7 month old baby (and in fact the 2 year old boy too) needs milk and diapers. Dahlia cannot breastfeed, and that means even more money needed. Her 3 schooling children, are surviving with one pair of school uniform each. Workbooks and whatever else that need to be paid to the respective schools, have not been paid. They go to school by bus, but not a single sen has been paid since January this year. The children are beginning to get the unpleasant look from the bus driver.

I didn’t bring much cash with me when I went to visit today, but knowing that the welfare department had given immediate relief when they visited just a few days before, I wasn’t too worried about immediate need for food. However, I did leave her RM200 cash, and told her to pay the money to the bus driver the very next morning, and to promise him that she’d pay the outstanding balance after the coming school holidays. Hopefully, that way, the bus driver will not refuse to fetch the kids after the school holidays.

After coming back from the visit, I immediately updated my FB status, informing my FB friends about the plight of this family. I now already have some donations coming in to be used for the family’s immediate needs. I was also able to get education sponsors for the 3 schooling children. I am planning to bring them shopping next week. Hopefully that will bring the children some cheer.

Friday, 14 March 2014

Where have I been?

Hmmm… more than a month since my last blog posting. Have I stopped doing voluntary work?

Well, no. I am still actively involved with Buddies of Ipoh. But the things that I do are getting more and more routine. Less of those complicated cases I used to get back then. Main thing is probably because my fellow volunteers who attend clinic duties are assigning less clients under me, because I already have a long list of clients.

As for my old clients, either they are doing considerably okay now (okay enough to be independent) or in the case of some of them, they have gone missing from my radar.

And so my routine continues… clinic duty in Ipoh once a fortnight. Clinic duty in Taiping once every 2 months. Home visits when necessary. Monthly board meetings. Making sure the children under our education sponsorship programme get their monthly bus fares/pocket money disbursed on time. Talks/exhibitions when requested.

Once in a while there may something non-routine. Like last Tuesday I was in Penang, invited by USM’s Women’s Development Research Centre (KANITA) as one of the panellists for their International Women’s Day programme, with the theme, “Inspiring Change”.

The other 2 panellists were teachers from Sekolah Kebangsaan Lemoi, Cameron Highlands. It was interesting listening to the challenges they had to face being the first (and so far the only) 2 female teachers at the school, away from all the facilities that we have been taking for granted.

It was an eye-opener for me, and being the “adventurous” type, I would love to one day visit the school.

Hopefully my sharing on what I do as a volunteer with Buddies was also an eye-opener to the audience.

Monday, 10 February 2014

When a child is deprived of treatment…

I was on clinic duty again today. Nowadays I no longer worry about parking at the hospital as I no longer drive my car there. All I have to do is drive to the velodrome, park my car there and get a ride in the shuttle van provided by the hospital for free.

When I got to the hospital, I was told by the nurse that there’d be 2 new cases to be referred to Buddies today.

The first case referred was that of a young guy in his twenties, very skinny and with a CD4 of only 4. He looked like he had given up hope. But he was accompanied by his sister, who seemed very supportive of him and from what I was told, his father and a few other siblings also knew of his condition and they were all supportive as well. Hopefully with the kind of support that he is getting, he will adhere to all his treatments and get better soon.

After I handed over the guy’s file back to the nurses, the staff nurse came to the counselling room to ask me to stay on a wee bit longer if possible although the other new case she had wanted to refer to me wasn’t there yet. The new case was that of a 13 year old girl and the staff nurse thought the family needs the support of Buddies. I was told that the girl’s HIV status had not been disclosed to the family yet.

I waited and waited, nobody was referred. By 12.30 pm I went over to the doctor’s room to see the staff nurse to find out if I should wait any longer. The staff nurse had just got off the phone with the mother of the 13 year old girl. The mother, who had given all sorts of excuses before this (this was the 3rd time the nurse set up an appointment for the girl, she defaulted all 3 times), said she wasn’t feeling well and thus, decided not to bring her daughter for the appointment. When the nurse told her that they needed to inform them of the girl’s ailment, the mother said she already knew what the girl has. By the sound of it, the mother must have known all along that she (the mother) too had been infected by her late husband but simply never bothered to get treatment.

From what the staff nurse told me, the girl’s father had been a patient at the ID clinic before but he too always defaulted his appointments. He died a few years ago. The mother however, never went to the ID clinic to get tested.

Our main concern is, the 13 year old hiv+ girl has a younger sibling aged 5 who has not been tested.

We’re not really sure why the mother didn’t bother to bring her child for treatment. If she wasn’t bothered about her own wellbeing, she should at least give her daughter a chance to get proper treatment. But she could have problems of her own. Being a single mother to 7 children is definitely not easy. Maybe she has financial problems and couldn’t afford the transport to bring her child to the hospital?

My worry is that she may think those with HIV don’t have much hope, and thus, there’s no point getting treatment at the hospital.

For the moment there’s not much I can do. Buddies don’t have the authority to simply go to the homes of PLHIVs without their permission. But I do believe health inspectors have the right to visit them at home if they don’t come for their hospital appointments. From my conversation with the doctor and the staff nurse today, I understand that would be their next course of action.

I told the nurse to just give me a call anytime whenever she needs me to help out with this case.