A hectic day at the clinic

Usually during any of our clinic duties, we’d get at the most 3 or 4 cases each time, with maybe only one or two problematic ones… sometimes none at all. So when I went for my clinic duty today, I had expected the same thing.

I had brought along with me a few of the “Positive Living” booklets. SN called me on Monday to ask if I had any of the Malay and Tamil version of the booklets as she had run out of those. I didn’t have any Tamil ones, but there were a few more of the Malay version at our centre, and so I brought those for SN.

The moment I got into the doctor’s room, SN immediately told me about the case of one guy whom we sent to a shelter home in Penang less than 2 months ago. The guy apparently ran away from the home and is now back in Ipoh, homeless. He felt the home was too strict with regulations. Likewise there was another guy whom I had sent to a shelter home in Selangor, who also decided to leave the place and is now back in Ipoh. I remember buying t-shirts and trackbottom for the guy as otherwise I would have to bring him in hospital clothes because he didn’t have any other clothes. This guy left the home because he wasn’t in good terms with another occupant of the home.

Aiyoh!! As the doctor said, they don’t want to stay in shelter homes, they want to stay in hotels where they don’t have to pay! Susah… susah… tolong susah, tak tolong pun susah…

Anyway, after about a 15 minute chat with SN (about the above cases, about Shila’s death, about another PLHIV who seemed interested to join Buddies etc), she told me there was a new case they wanted to refer to me. So off I went to the counselling room, getting ready to meet up with the new cases to be referred.

The first case referred was a guy in his 50’s, married to a young wife, and they have a 5 year old daughter. He works as a carpenter, not earning much, while his wife doesn’t work. While I did manage to get some info from him, when I started getting into more details, he couldn’t understand me. Luckily the pharmacist in the same room, upon hearing our conversation, helped me out to speak to the guy in Chinese. Knowing that his child may need help with schooling necessities when she goes to kindergarten next year, I told the guy I’d assign him one of our Chinese volunteers so it will easier for him to communicate with us.

Next up, one lady was brought in by the nurse. Her husband had just been diagnosed +ve this year, and recent tests confirmed that the lady, Shanti, too was positive. Today was her first appointment with the doctor. Shanti’s husband just started work recently as a lorry driver. They have a 6 year old daughter who is already in kindergarten and will start schooling next year. Another case needing assistance from our Children Education Fund (CEF). A buddy will need to be assigned.

Next case brought in was a prison case. The PLHIV came handcuffed to a policeman, with another policeman escorting as well. Not much for me to say except to explain to him particularly on the do’s and don’ts.

Then, the nurse came in and said to me, “Ni ada satu lagi pregnant case.” The lady brought in looked somewhat matured, so initially I thought it was a married case. Another lady came in with her – whom I thought to be the mother or older sister. Only when I looked at her file did I realise that it was another of those unwed pregnancy cases. The lady, 30, hails from another state and is only in Perak to be placed at the shelter home for problematic young women, temporarily. The home is full to the brim and so for unwed pregnancy cases, they’d only allow shelter until 2 weeks after delivery. Frankly, I didn’t expect a 30 year old to be placed there. Usually they take only problematic teenagers.

I didn’t assign any buddies for this case. She’s due to deliver in October and when I asked what her plans were when she has to leave the shelter, she looked at me with that amused look and said, “Balik rumahlah, ke mana lagi?” Duh! Silly me huh? She probably never heard of those cases where the unwed mothers had no “home” to go back to.

Next up, another lady, Aiza, who is in her late 20’s. She had just been diagnosed this year when her husband was hospitalised. Her husband died this year. Aiza stays in a kampong I’ve never heard of, and when I asked if she has a job, she told me she’s a rubber tapper. Wow… she must be the most rugged rubber tapper I’ve ever met! :-) Aiza has no children, so I don’t have to worry about children education, but she sounded interested in the activities that we organise, so I told her I’d be calling her from time to time.

Just when I thought there were no more cases for the day, the nurse said there was another new case. Well, not really a new case…. but a new case at the Ipoh ID clinic. You see, the guy had been in UK for the past 2 years and just came back recently. He had already started his ARV medication when he was in the UK. When the nurse asked the guy and his brother who came along with him if they could speak  Malay, they both said, “Aiyo, ta boleh la…” “Sikit-sikit?” “Sikit-sikit boleh la…”

So yes, they came in and I had to speak to them in the most broken Malay I could attempt. Then I remembered, hey, this guy just came back from the UK, so I tried speaking to him in English. Gosh, his English was even worse than his Malay. How on earth did he survive in the UK?? I did manage to get them to understand that I’d be assigning one of our Chinese volunteers as his buddy. The guy said, “Chinese man hokeh. I donno how to speak Malayu.” (And in my head I was thinking…. Engrish oso you cannot speak lor…)

That was it – the 6 new cases I met today. A record for me. 4 of them assigned buddies. I did get to see 2 of my old clients… Maria and Lin, but since I was busy with the new cases, I didn’t get to chat much with them, although I did manage to inform them about Shila’s death. They both knew and had met Shila before.

When I got home, Maria called me up asking if I was still at the hospital. When I told her I was already at home, she asked if I could help her out next week.

“Kak, doktor refer saya ke clinic psychiatric pulak minggu depan. Saya tak berani la pergi sorang-sorang.”

Oh dear, psychiatric? Has she been having depression? I know she was very depressed initially when she was first diagnosed +ve 5 years ago, but I thought she had gotten over it. Wonder what’s going on now…

I promised to accompany her on her appointment day. Good chance for me to have a long chat with her and to find out what’s going on in her life…

Helping the living…

When Shila died about 10 days ago, my main concern then was to ensure her daughter, Laila, would continue to get our support, especially pertaining to her education. So, while I had not planned any visits last week, I did visit Laila on Saturday, not only to discuss about Laila’s needs, but also to hand over the donations I managed to collect from friends.

This week, it’s back to my normal routine of home and clinic visits. It’s the living ones that I have to help, not much I can do for the dead except to doa for them.

When I told Faridah’s sis-in-law last week that the shelter home in KL had agreed to take in Faridah under their care, she agreed to meet up with me during Faridah’s appointment at the hospital on Monday. So yesterday morning, I went over to the hospital, not for clinic duty, but specifically to meet up with Faridah and her SIL. And unlike usual, yesterday I was rather lucky when a car got out of a parking lot right beside the specialist clinic building as I was passing there, and yes, I got myself the nearest parking possible! Such luck – it doesn’t happen often!

It was about 9.30 am then, and Faridah’s SIL told me last week that they should be there around 10 am. But when I went up to the doctor’s room, the nurses told me that Faridah and her SIL had just left. And their appointment wasn’t supposed to be yesterday either… it was supposed to be this morning! The SIL wrongly looked at the date.

Since they had just left, chances were they were still at the hospital. I immediately called the SIL to ask where they were and true enough, they were still at the hospital. The SIL promised to come back up to the clinic to meet me.

Actually they (or more of the SIL, since Faridah herself simply follows whatever people tell her to do) had gone to the clinic this time to ask for a referral letter so that Faridah’s case could be transferred to KL. The intention was that once they got the letter they could immediately send Faridah over to KL. The problem was, they had not informed the clinic of their intention earlier, and so the clinic couldn’t issue the letter there and then. Even the doctor wasn’t in yet.

The nurses promised to call once the letter is done. And although I did tell the SIL to inform me once they decide when exactly they are sending Faridah, so I could alert the person in charge at the shelter home, the SIL thought she’d inform me on the day itself. Aiyo, susahlah like that… what if the people at the shelter home has other programmes on the day? This time when I asked, she said very likely they will send Faridah this week, as soon as they could get the referral letter. So I immediately called up the person in charge at the shelter home to inform her that Faridah would be coming some time this week, without specifying the exact day.

Today I continued with my house visits and delivery groceries. As usual, I’d get more donations during Ramadhan, and so I could buy more groceries and help out more families. I had bought the groceries last week and left them at our centre so this morning I didn’t have to go buy anything, I just went straight to the centre and loaded all the stuff into my car.

First destination was Fuzi’s house. Before I left the centre, I called her first to make sure she was in. She’s not really the type who often goes out anywhere, but I didn’t want to end up going to her house when she’s in Ipoh for her hospital appointment. Apparently she was in Ipoh yesterday for her appointment and so she’s home today. Perfect timing.

When I got to her house, her 3 boys were playing outside while her 2 girls were at school. The 2 boys’ school bus would usually come and fetch them around 11 am, while the youngest, Iwan, is only 5 years old. I got Hafiz and Ijam, 2 older boys to help carry the groceries from my car. Didn’t give anything to Iwan although he offered to help… all the stuff were too heavy for him to carry.

When I told Fuzi about Shila’s death, she was shocked. “Kan masa hari keluarga hari tu, dia elok saja kak? Dia meninggal kerna HIV ya kak?” she asked in her still strong Indonesian accent. I told her Shila’s death had nothing to do with HIV. She had heart problems. The next question Fuzi asked was whether Shila’s body was bathed by people from the hospital although Shila died at home. She thought since Shila had HIV, nobody else would dare bathe the body. Her jaw almost dropped when I told her I handled everything.

“Habis tu, kakak pakai segala tutup mulut, apron semua itu?” she asked again.

I told her there was nothing for me to be afraid of as HIV doesn’t get transmitted so easily, to which she responded, “Itulah yang saya hairan kak. Doktor bagitau saya tak mengapa kongsi makanan, pinggan gelas apa bagai, tapi waktu si Ijam masuk hospital seminggu kena denggi hari tu, sakit hati saya kak… semuanya diasingkan untuk Ijam. Makanan pun diberi makanan bungkus bukan dalam tray seperti orang lain. Sampai ada orang tanya saya kenapa begitu.”

Well yes, she’s got a point there. The stigma still exists amongst the hospital staff themselves and naturally other people would think the hospital people should know better than people like me…

Anyway, after leaving Fuzi’s house, I called up Aini. The last time I visited her was at the hospital when she was hospitalised right before our Family Day. And yes, she was home. Her hospital appointment will only be some time middle of this month. I prefer to visit her when her children are at school so we could freely talk about her HIV. None of her children or any other family members know about her HIV.

There was a child with Aini in the house when I got there – the boy Aini babysits. The only source of income for Aini other than the monthly welfare aid of RM300. But the boy knows nothing and Aini herself freely talked about her HIV, the problem with her early ARV etc. I guess it’s not easy having to keep everything to herself, when she got the chance to freely talk about it, she did!

Aini too, when told about Shila’s death, was quite surprised. But she knew that Shila had heart problems.

“Saya harap kalau saya mati nanti biarlah kat hospital. Mandi kapan semua kat hospital, tak kecoh sangat kat rumah.”

Both Fuzi and Aini had seen how kecoh it can be when people from the health dept comes to visit at home. And both of them hope when their time comes, they will die at the hospital, not at home; so that all the necessary arrangements can be done at the hospital without any hoo-hahs at home.

But hey, Shila died at home. No hoo-hah for her as nobody from the health department came. I think it would have been a different story if they did.

Visiting the orphan

Exactly a week after Shila passed away, today I decided to pay her family a visit. Her daughter Laila is under our education sponsorship programme, and since it wasn’t the right time to discuss the matter during Shila’s funeral last week, I figured today would be the right time to pay them a visit. Besides, Shila’s main buddy was overseas last week and was not able to attend her funeral, and so when I asked if she’d like to join me for the visit, she immediately agreed.

Before I left the house last week, I told Shila’s mother and sis-in-law to make sure Shila’s handphone is kept on to make it easier for me to contact them. I had promised Shila’s mother that we’d still continue to help out with Laila’s schooling needs. So yesterday when I sent a text message to Shila’s number, saying I’d be coming to visit today, her SIL replied using her own number. I guess Shila’s number ran out of credit to reply my message.

We got to the house at about 11 am as promised. Initially we only saw Shila’s sisters-in-law and the small children. After a while Laila came out with her grandma. The girl looked okay, I think for the moment she is coping quite well without her mother. According to the grandma, the girl’s paternal family did come and visit last week during the funeral, although they were a bit late as they came all the way from another state. Apparently Laila’s paternal grandma did offer to take care of Laila but that would mean a total change of environment for Laila as not only would she have to move to another state, she’d have to change school and she’d be staying with people she’s not quite used to. That girl would probably miss her mother even more!

At least if she continues to stay with her maternal grandma, the only thing she’d have to adjust to is to live without her mother by her side. So the maternal grandma just told the other grandma that they could come take the girl during school holidays. They would have to come and fetch her though…

Anyway, all the while, the monthly pocket money for Laila under the sponsorship programme goes direct into Laila’s own bank account. So we don’t have to worry about changing the standing instructions to the bank. Today we just wanted to make it clear to Laila’s grandma that anything to do with the girl’s schooling needs is covered by the funds, but they’d have to tell us if there are any expenses needed out of the ordinary because we wouldn’t know unless we’re told.

I asked how Laila goes to school. I know previously Shila herself used to send her daughter to school on a motorbike. However according to the grandma, ever since Shila became unwell of late, she sought the help of a relative to send Laila to school. The relative isn’t so well-to-do either, so she gives RM30 per month to the relative to send the girl to school and fetch her after school. Looks like beginning this month I will have to add another RM30 to the bank’s monthly standing instructions to cover for transport.

When Shila was alive, she used to get a financial aid of RM250 per month from Baitulmal. The amount went into her bank account every month. Hopefully Baitulmal will now consider giving the aid for Laila instead, under the grandma’s name. The grandma has yet to go to the Baitulmal office, according to her she plans to go this coming week. Hopefully her plea will be considered. But that, even if approved, may take some time to be processed. They need money, especially with Raya coming soon.

Before we left, I passed an envelope containing some cash to the grandma. The money had been donated by my friends who banked in the amount into my account, meant to cover for Laila’s needs. I think the grandma didn’t expect to get the cash – she seemed quite surprised. Earlier on I only mentioned about wanting to discuss Laila’s schooling needs, nothing else. The amount should be enough to cover their Raya expenses. My colleague then mentioned to Laila about our Family Day and that she’s welcomed to join us for our future Family Day events. Laila had always looked forward to our Family Day when she gets to enjoy herself. At this point, I could see tears dwelling in the grandma’s eyes.

“Memang dia seronok sangat yang pergi hari tu,” said the grandma. That was probably the last time Shila and Laila had their photo taken together. I passed them the photo when I brought the two for makan-makan in Ipoh about a month ago. I bet Laila will treasure that photo forever…

 

Facing the deaths of my clients

Having been a volunteer with Buddies for more than 7 years now, and being the one assigned with the most clients, having to face the deaths of my clients is something I have to go through, like it or not. And before you misunderstand me and start thinking that those diagnosed HIV+ don’t have much time to live, please bear in mind that many of these clients had been diagnosed many years ago… or for some, by the time they were tested, their condition were already bad. And there were a few too, who succumbed to other diseases, not HIV-related.

So far 11 of the clients whom I knew and had personally met, had passed on, while another one, Makcik Minah, to whom I was assigned to but never got the chance to meet as she never answered my calls, died a lonely death, at the age of 74.

Out of the 11 whom I had met, I attended the funerals of 5 of them. The other 6, either I wasn’t around on the day of their funeral, or I was only told about them later.

The first of my client’s death I had to face was that of Rose. Although she had been a client of Buddies since way back in 1999, I was only assigned as her buddy in 2006. Before that Buddies didn’t have a single Malay volunteer, and so when I got in, and the other volunteers managed to track Rose (after going missing for some time), I was immediately assigned as her buddy. By then she had been diagnosed with CA of the cervix, and her cancer had spread. I only got to know her for about 2 1/2 months, but grew rather close to her as I was always helping her with her hospital appointments etc. She was poor and weak, I simply didn’t have the heart to let her go to the hospital on her own by taking a bus. Besides, I think if she had no choice but to take a bus, she’d probably skip her appointments altogether. Rose died at the Palliative Care Unit at the hospital, and the very same morning, her sister called me up to inform me of her death, as Rose had specifically told her sister to inform me should anything happened to her. I did go to the house to help out the family, but Rose’s body was bathed and prepared at the hospital and so there wasn’t really much to do at home.

The next client was Azman, Yah’s husband. At that time, Yah, still a very strong determined lady, had problems with her in-laws. Azman, other than HIV, had mental problems as well, and about one week before his death, I had to help bring Azman home from the hospital as none of his siblings were willing – giving all sorts of excuses. I did go to visit when Yah called to inform me of Azman’s death. Since he died at home, the family called the hospital people to help manage his body. The Health Dept people who came, not only made their presence obvious, they also dug a hole outside the house, obvious to everyone, poured Clorox into the hole and then buried Azman’s clothes inside it. Needless to say, the neighbours became suspicious, and within the day, the whole neighbourhood knew Azman had HIV.

Then there was Lily, whom I didn’t get to know too long either. She too, like Yah, had problems with her in-laws. As a matter of fact, when her late husband was diagnosed HIV+, her in-laws simply took him to stay with them in another state and nobody bothered to tell her about his HIV. She only found out about it when she got her husband’s death cert, and when she & her children went for blood tests, she and her youngest child, were tested +ve. But Lily died from dengue, not HIV. I did attend Lily’s funeral, in fact I followed the family from the hospital’s mortuary to her father’s kampong where she was buried.

Another client, Rashid, died on the 3rd day of Raya. It being Raya week, I made sure I took a break from voluntary work so I could spend time with my own family members. It wasn’t easy though. What with Hana (Rashid’s wife) texting me to say she needed me as she didn’t know what to do, I did feel somewhat restless with the situation. But I had promised to go elsewhere with a few of my family members on that particular day, and my policy had always been, family comes first. However, I did entertain Hana’s calls, and taught her through the phone on how to go about doing things at the hospital before bringing Rashid’s body home for the funeral. And by the end of the day, I did call her again to make sure everything was settled.

2 days after Rashid died, came Rina’s turn. Yes, both within the first week of Raya. But by the time I got the call from Rina’s brother informing me that Rina had passed on, my siblings had gone back to their respective homes, and so I did make it a point to visit, not only to pay my last respects, but also to give moral support to her family, especially her mother whom I had met a few times. At first I went to her mother’s house, but nobody seemed to be there. Then I called the brother, who told me that they were making all the necessary arrangements at the hospital, and then from the hospital straight to the grave. So I just went to the mortuary, and met her mother there.

Next on the list was Rose’s brother. Yes, he too was HIV+ although how they got infected had nothing to do with each other. Rose, through her husband, while her brother, through IDU. Rose’s death didn’t stop her family members, particularly her sisters from keeping in touch with me (even now they still send me text messages from time to time), and I was the one they consulted to help arrange for a hospital appointment for their brother. I did help out, but the brother only went once, and defaulted after that. When his condition worsened, the sisters called me again to ask what they should do. So I just told them to bring him to the hospital. Not much could be done by then, but at least they could help reduce the pain. He died within the same week after the sisters called me. But I didn’t attend his funeral as I already had prior engagements.

Then there was AJ. I was never in touch with AJ (although I did meet him once), but had been liaising with his wife (who had been spared from the virus, alhamdulillah) who had sought moral and emotional support from me. AJ himself seemed to have given up on his life the moment he was diagnosed +ve, and so he didn’t fight it. When AJ died, I was in KL and so I didn’t visit. I did however, followed up with his wife and children when I came back to Ipoh to assess the family’s needs.

Another client, Hamidah, whom I met at the hospital during my clinic duty, died that very same night. With all the problems that she had, I was still trying to figure out how I could help her when a nurse from the district hospital where she was hospitalised called me to inform me of her death. I had actually told them I may visit her, and so they quickly called me up the next morning to save me the trouble from visiting.

Another client I had met once was Roslan. He wasn’t keen on the idea of us visiting him at home as he didn’t want his neighbours to get suspicious. So yes, we met him outside, and to help arrange for financial assistance for his family, we promised to meet up again so he could pass us all the necessary supporting documents. But our calls after that were never answered and text messages were never replied, leading us to think that he didn’t want us to get involved. Later, I managed to get hold of his wife, and found out that he had died. And so much for not wanting us to visit to avoid suspicions by the neighbours, when he died, the Health Dept people went to visit and supervised the pengurusan jenazah at home, and gave clear instructions asking the family to use Clorox etc. The whole neighbourhood found out he had HIV.

Jeff was another client whom I had met, and in fact visited at his mother’s house. But he had long decided that he didn’t want to go for follow-up visits to the hospital and since he didn’t go for his appointments, neither did his wife, Faridah, who was also confirmed +ve. I lost touch with them after that visit… until recently when Faridah was brought to the hospital by her sister-in-law who just found out about the couple’s HIV status.  Jeff had passed on about 10 days earlier at home, and like in Roslan’s case, with the obvious presence of the Health Dept people (and whatever else that they did when they were there), those who were present found out.

The last (so far) of my clients’ death I had to face was that of Shila, who died just recently… the first case that I was fully involved in the pengurusan jenazah. I made sure I didn’t do anything to cause any suspicion amongst those present. It wasn’t necessary at all. There was nothing to worry about, I know for a fact HIV doesn’t spread that easily and while I did take precautions, nothing I did was really out of the ordinary to cause any suspicions.

I know Shila’s death won’t be the last I have to face (unless of course, my turn comes before anybody else’s) and since death is something I have learnt to accept, I believe I am capable of facing them calmly. It doesn’t matter if some people think that I have no feelings…

Arranging for a shelter home…

When I texted SN on Saturday to inform her of Shila’s passing, despite it being her off day, SN immediately called me back as she too, like the rest of us, was shocked with the news.

And since she was already on the line with me, SN took the opportunity to ask about Faridah (see my earlier posting here). I told SN I had not called the shelter home to ask if they’d accept Faridah, because when I spoke to Faridah’s sister-in-law last week, I was made to understand that both sides of the family agreed that even if Faridah were to leave her MIL’s home, it should be after her iddah is over.

When I told SN that they wanted to wait until Faridah’s iddah is over, and that would be in another 4 months time, SN got worried. Due to Faridah’s condition (she had defaulted her appointments before this and her CD4 had gone down) the doctor wants her to start her antiretroviral (ARV) soonest. However, if she continues to stay with her MIL, we can be very sure she will not be compliant in taking her ARV.

You can teach Faridah that she’s supposed to take her medication, say at 10 am for example, but Faridah isn’t even able to tell the time. Seriously! And since her MIL is also unwell, we can’t depend on her MIL to be reminding her either. And nobody else stays there with them. In other words, for as long as Faridah continues to stay with her MIL, there is no point letting her start her ARV. Her side of the family, as mentioned in my earlier posting, is not willing to take her to stay with them, which was why they wanted her to go to a shelter home.

I had earlier agreed to help them find a place for Faridah after her iddah is over – at that time I had not discussed with SN or the doctor about her condition. But after listening to SN, I must agree that the sooner Faridah gets proper care, the better.

So this morning I called up the person in charge at a shelter home for HIV+ Muslim women, and she had no problem accepting Faridah anytime. I then called up Faridah’s SIL, the one I met last week. After explaining things to her, she too agreed that maybe we shouldn’t wait until the iddah is over. I also asked if they could arrange to send Faridah to KL themselves, and by the sound of it, I think it shouldn’t be a problem. Since she will be bringing Faridah for another appointment in Ipoh GH next week, we agreed to meet up and discuss matters further then. I’d need them to decide on a date so I can inform the person in charge at the shelter home.

So far the women I had arranged to send to shelter homes had been young 20-something year old women. This is the first time I’m arranging to send an HIV+ woman who’s almost half a century old to a shelter home. Well, at least part 1 of the problem is settled…