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…