In Loving Memory of Rose - A Recap

I was going through my old log book (to keep track of the progress of my HIV clients) and noticed that one of my earlier clients, Rose, died in May 2006. Yes, it has been 2 years and In Loving Memory of Rose was the first of my clients’ stories that I highlighted in this blog.

For this posting I’d like to share my notes on Rose, from the first day I was introduced to her until the last day of her life. (*I’ve omitted real names and place of stay.)

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15/2 – Was introduced to Rose at the HIV clinic.

5/3 – Went to Rose’s house with a few other Buddies but was told by neighbours that she was hospitalized. Immediately went to GH to visit her.

6/3 – Went to visit Rose again to check on her needs. Was informed she hadn’t been receiving her monthly financial aid from JKM since December. Children’s school fees and bus fares had not been paid. To help out in finding sponsors or get CEF for her children.

8/3 – Rose called to inform that she has been discharged.

15/3 – Called Rose to check on her condition. Was told she has hospital appointment on 20/3 and 28/3.

20/3 – Fetched Rose from GH, brought her to JKM and sent her home.

21/3 – Received call from Rose saying she has to be warded again. Fetched her and sent her to GH.

24/3 – Went to visit Rose at GH. Was informed that doctors had to prescribe her Warfarin.

27/3 – Visited Rose again. She was transferred to 8B.

31/3 – Visited Rose again.

3/4 – Visited Rose again. She seemed depressed after informed by doctors that her cancer had spread. Also met her sister, the one closest to her.

7/4 – Rose was discharged. Fetched her from GH and sent her to her sister’s house.

8/4 – Received call from Rose. She had to be warded again.

10/4 – Went to visit Rose. She was in excruciating pain.

13/4 – Went to visit Rose again. Met another sister of hers.

14/4 – Received call from Rose saying that she was discharged. This time her brother fetched her from the hospital.

17/4 – Received call from Rose. She needed help to bring her to GH the next day for her appointment.

18/4 – Fetched Rose and her sister from her sister’s house and brought them to the hospital.

25/4 – Received call from Rose at midnight asking for help to send her to the hospital the next morning as nobody else was willing. She couldn’t afford a taxi and too weak to go by bus. Told her I had a meeting the next morning and would only be able to send her in the afternoon. Since she had no other choice, she agreed.

26/4 – Went to fetch Rose in the afternoon. She seemed weak and in pain. Had to help her to the wheelchair and from the wheelchair into my car. Dropped by her sister’s house to fetch the sister so there’d be someone accompanying Rose while I park my car at the hospital.

28/4 – Went to visit Rose in the afternoon. She was in too much pain and couldn’t be bothered with her surroundings. Was informed by nurse on duty that they needed to see Rose’s family as they needed to transfer her to palliative care. Called Rose’s sis-in-law to inform her and asked her to get any family members to come to the hospital.

29/4 – Called to check on Rose’s condition. Her sister answered the phone. Was informed that Rose was most of the time sleeping and no longer talks to any of the family members – not even her children.

2/5 – Visited Rose at Palliative Care. She was sleeping. A relative of hers tried to wake her up but there was no response.

6/5 – Went to visit Rose. Again she was sleeping.

8/5 – Received call from Rose’s sister at 7.30 am to inform me that Rose had passed away.

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Noticed that during the early stages nothing was mentioned about her family members? And noticed that I went to visit her quite often? Well, I felt I needed to visit her often because she seldom had visitors. It was only after her condition worsened that I began to see her siblings… even then they didn’t visit her enough. They only gathered at the hospital after she was transferred to Palliative Care. By then Rose was unconscious most of the time.

So folks, don’t wait until your family members/friends are dying before you start showing them that you care. Don’t wait until it’s too late…

*Note: From the notes it may seem as though my life is all about my HIV clients. No, it's not usually like that - only for certain circumstances. In Rose's case, she needed all the support that she didn't seem to get from her family members.

Mother's Day Special

BREAKING NEWS: ALL MOTHERS ARE BANNED FROM THE KITCHEN ON SUNDAY 11TH MAY 2008!

Oh, come on... in appreciation of all the things our mothers have taught us, let's give 'em a break okay?

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My Mother taught me about ANTICIPATION...
"Just wait until your father gets home."

My Mother taught me about RECEIVING....
"You are going to get it when we get home!"

My Mother taught me to MEET A CHALLENGE...
"What were you thinking? Answer me when I talk to you! Don't talk back to me!"

My Mother taught me LOGIC...
"If you fall out off that swing and break your neck, you're not going to the store with me."

My mother taught me more LOGIC...
"Because I said so, that's why."

My Mother taught me MEDICAL SCIENCE...
"If you don't stop crossing your eyes, they are going to freeze that way."

My Mother taught me to THINK AHEAD...
"If you don't pass your spelling test, you'll never get a good job."

My Mother taught me HUMOR...
"When that lawn mower cuts off your toes, don't come running to me."

My Mother taught me how to BECOME AN ADULT...
"If you don't eat your vegetables, you'll never grow up."

My Mother taught me about GENETICS...
"You're just like your father."

My Mother taught me about my ROOTS...
"Do you think you were born in a barn?"

My Mother taught me about WISDOM OF AGE...
"When you get to be my age, you will understand."

My mother taught me TO APPRECIATE A JOB WELL DONE...
"If you're going to kill each other, do it outside. I just finished cleaning."

My mother taught me RELIGION...
"You better pray that will come out of the carpet."

My mother taught me about TIME TRAVEL...
"If you don't straighten up, I'm going to knock you into the middle of next week!"

My mother taught me FORESIGHT...
"Make sure you wear clean underwear, in case you're in an accident."

My mother taught me IRONY...
"Keep crying, and I'll give you something to cry about."

My mother taught me about the science of OSMOSIS...
"Shut your mouth and eat your supper."

My mother taught me about CONTORTIONISM....
"Will you look at that dirt on the back of your neck!"

My mother taught me about STAMINA...
"You'll sit there until all that spinach is gone."

My mother taught me about WEATHER...
"This room of yours looks as if a tornado went through it."

My mother taught me about HYPOCRISY...
"If I told you once, I've told you a million times. Don't exaggerate!"

My mother taught me the CIRCLE OF LIFE...
"I brought you into this world, and I can take you out."

My mother taught me about BEHAVIOR MODIFICATION...
"Stop acting like your father!"

My mother taught me about ENVY...
"There are millions of less fortunate children in this world who don't have wonderful parents like you do."

My mother taught me ESP...
"Put your sweater on; don't you think I know when you are cold?"

And last but not least...

My Mother taught me about JUSTICE...
"One day you'll have kids, and I hope they turn out just like you....Then you'll see what it's like!"
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*from my email archives*

"By and large, mothers and housewives are the only workers who do not have regular time-off. They are the great vacationless class."
- Anne Morrow Lindbergh -

To all mothers - YOU ARE A GEM!

HAPPY MOTHER'S DAY!!

What would you do...

… if you found out that your husband had been infected with HIV? How would you feel, knowing that you too may have been infected? Would you be angry? Sad? Confused? Unsure what to do?

Would you react differently, if your husband got HIV through different ways? Would you be able to accept your husband more if he got infected through drug injections instead of through promiscuous activities?

Actually, the recent talk for the Perak Women for Women (PWW) Society, where the matter of the empowerment of women were brought up, had me thinking. Would things have been different if the women under my charge had been empowered with more knowledge?

Would it have been easier for the women to make decisions for their future?

Ahh… so many questions!!

I do wonder how different people would react to the different situations faced by my clients. So this time, I am hoping my blog readers can give some input on how they think these women should react. Let me just refresh your memory with some of their stories…

In the case of Zainab, she found about her HIV infection before her husband found out about his. She was pregnant with her second child then, and when they found out that Zainab was HIV positive, her husband Zaki had the cheek to ask Zainab if she had any affairs with any Mat Banglas at her work place since he himself did not have HIV. Only later when he did his blood tests and found out that he too was infected did he admit that although most of the time he took pills for his drug addiction, there was once or twice that he resorted to sharing needles for injection. Zainab readily forgave him. After all she thought, since both of them had already been infected, they might as well just live positively as husband and wife for the sake of their children.

Then there was Mrs. K, who found out about her husband’s HIV infection when she was pregnant – but she herself miraculously was not infected. The doctor had her blood tests done twice to be doubly sure she was not infected. Mr. K, despite being a former policeman, somehow got involved in drugs and that was how he got infected. Mrs. K’s family was mad with Mr. K and told Mrs. K to leave her irresponsible husband, but Mrs. K remained loyal to him despite herself being confirmed negative.

In the above cases, the husbands were injecting drug users. They didn’t play around with other women.

Then there’s Lin… yes, Mr. Darling’s ex-wife. Lin had known about her husband playing around with other women for many years, but being someone who believed that she had to sacrifice for the sake of the children; she just tolerated him and prayed that one day he’d change. Well, he did not. And after keeping everything to herself without letting her feelings out to anyone, when she found out her husband was HIV infected and that she too was infected, that was the last straw. She was mad at him for being the reason of her infection. She asked for divorce. By then, although 3 of her 6 children were still schooling, they were grown up enough to understand her situation.

Recently, a blog reader, R, contacted me to relate her story as she needed to talk things out with someone. Now, to regular readers of my blog, don’t get so curious… she never left a comment in my blog and no, she’s not someone you know, ok? She actually contacted me direct to my email address and later on I gave her my number so we could talk. Let me just summarise R's story without going into the nitty gritty details.

In R’s case, when the husband was found to be HIV positive, he admitted to her that he had been “naughty” before their marriage. For a moment there, R did feel a bit relieved although she was still worried about getting infected as well. The fact that he did not cheat on her after marriage somehow did make her feel a bit better. Then after some thinking, she remembered that her husband had been quite a regular blood donor… surely his blood would have been tested for HIV. If indeed his HIV infection occurred before their marriage, surely he would have been detected positive during one of his blood donation and he would have been informed earlier. When cornered, R’s husband finally admitted that he did “have some fun” during his recent overseas assignment. Yes, just recently!

The first blood test done 6 months ago for R was negative. But not long before that the couple had been planning to have another child and when the first blood test was done, it was still during the window period and as such R was not 100% safe yet. R had just done her 2nd test and is now waiting for the results before she can be sure of her status.

For the moment R is still with her husband, although she no longer feels for him the way she did before. Her decision on her future will depend on the outcome of her blood test. Unlike the other women I mentioned in my stories, R is an educated and independent person. By the way, R has 2 kids, aged 3 and 8.

What do you think her decision will be? And what would you do if you were in her shoes?

And to all out there, please... you may think that any action of yours, no matter how bad, is OK because it’s your life and it’s your problem if you get into any trouble. Just remember that your decision now may not only affect your own life, but also the lives of others in the future… your wife, your children, your loved ones...

So, THINK, THINK and THINK before you act.

Introducing Buddies...

Yesterday we were invited by the Perak Women for Women Society (PWW) to give a talk to their members and some of their guests. The talk was an informal one, more to introduce Buddies to them and to form some sort of networking.

What's PWW? It is an independent voluntary organisation [like us Buddies] committed to improving the lives of women in Perak. Their vision is to create a just and equitable society where women are treated with respect and free from all forms of violence and discrimination. The society is affiliated to the All Women's Action Society (AWAM) [while Buddies is affiliated to Malaysian AIDS Council (MAC)].

3 representatives from Buddies attended the talk - our honorary secretary, the assistant secretary and yours truly. As for the audience, other than members of PWW, we had also a few foreign students under AFS (locally known as Antarabudaya Malaysia). We had students from US, Australia, Germany, Japan and Egypt.

Since this event was meant for networking, Dr Sharifah started off the talk by giving a brief introduction of PWW to us Buddies and to the AFS representatives.

Our honorary secretary then introduced Buddies to the audience - explaining about how we started off back then just as a project under the Perak Family Planning Association, and then later we decided to move on our own, as an independent organisation registered under the Registrar of Societies. She also highlighted our various services/activities other than providing support services to PLWHAs - HIV clinic, Children Education Fund, Sponsorship for Children, Outreach, Buddy Bears, Welfare, etc.

After the brief introduction to Buddies by our honorary secretary, I then took over from her. Since the event was organised by PWW, a society for women, I thought it would be good to talk a bit about Women and HIV. To talk in depth about the issue would actually need a whole session by itself, so I just talked a bit about the problems faced by HIV positive women in general. Dr Sharifah had after all, mentioned about the empowerment of women in her earlier introduction speech, which I found to be very related to our HIV positive clients.

As I mentioned, somehow people tend to look down more on HIV positive women as compared to HIV positive men. People tend to get the impression that HIV positive women are the "itchy-itchy" or gedik kind. Whereas in actual fact, at least in the Malaysian context, 90% of the women were infected by their own husbands! Now, how fair is that?!

I highlighted too my own personal experiences in dealing with the HIV positive women - those who were not given the right to make their own decisions, those who didn't get family support, those who didn't have anyone to talk to - all because of the stigma and discrimination they had to face.

The audience also shared some of their own experiences. One talked about a good friend of his who had AIDS... how when this friend died the family didn't want to touch him. Only one sister-in-law was willing to handle the body; but after that, the family insisted she goes for blood tests every 3 months! And oh, they also had the house sprayed!!

Another lady suggested that the awareness should start at the hospitals first! She mentioned about a friend of hers, suspected to be HIV positive (it was false alarm actually), and was isolated in a separate room at the maternity ward. That reminded me of Maria, a client of mine - while warded at the maternity ward, after one of her meals when one of the hospital staff came over to her bed wanted to clear her fork and spoon, the staff didn't dare touch the fork and spoon with her bare hands! How do you think Maria felt then?!

Some of the audience including foreign students.

Anyway, overall it was a good event. Not only did we manage to get to network with other societies, we also managed to share our experiences. We all agreed that more should be done to create awareness amongst the public.

Before the whole thing ended, Dr Sharifah on behalf of PWW handed over a token of appreciation, which I accepted on behalf of Buddies.

The token - this basket was actually made from recycled paper!

While we were having some refreshments prepared by PWW, a few of the PWW members came over to personally ask further about our support services and our experiences.

Hopefully this will be a start to a better networking and cooperation between the different NGOs.

Hospital visits...

I wasn’t on clinic duty this week. But I had arranged for Hamid’s mother to bring him for his appointment on Wednesday through some funds I managed to get for their traveling and I thought it would be best if I could meet up with them personally to enable me to help arrange for some fixed monthly financial assistance for them.

I was also told by SN during my last clinic duty that Kak Som’s appointment would be last Wednesday, and I figured I might as well meet up with her too as I have not had the chance to see or speak to her yet.

So Wednesday, after settling some things at my office, I took about an hour off to go to the hospital.

This is Ipoh, so hey, it didn’t take that long to drive from my office to the hospital. But as usual, getting a parking space at the hospital can be hazardous to your health especially if you have hypertension! (Thank God I don’t…) After a few rounds (and almost at the verge of giving up) I finally managed to get one spot outside the hospital. Had to walk a bit but not a problem for me.

I headed straight to the HIV clinic, wanting to see SN first and to ask her if Hamid and Kak Som came for their appointments. I have never met them before and as such I needed SN to show me which of the many patients were these two.

Before I headed to the doctor’s room to look for SN, I decided to take a peek out front to see if there were any familiar faces around. And whaddaya know, I saw a familiar face. Yah (yes, Yah Ah Ngau) stood up the moment she saw me and headed right towards me. Hmmm… she did look a bit different. When I first knew her she looked like the typical kampong girl. Then when she got infected by the angau bug from Mr Darling, she looked like a kampong girl trying to look like a city girl. Well, when I saw her on Wednesday, she no longer looked odd in her modern dressing. She now looks like a typical city girl. Ah well…

Anyway, no, Mr. Darling was not around, so I didn’t get the chance to see how this supposedly charmer look like. Yah told me that after the appointment she’d be going to KL as the next day (Labour Day) was a holiday. I asked if there was any specific reason for her to go to KL, to which she answered with a sheepish smile, “Tak lah, saja pergi jumpa kawan” and then gave me that “you-know-what-I-mean” look. Uh oh… I wasn’t going to ask for more details; so I excused myself saying I needed to see SN. After all, I needed to go back to my office after that, so I didn’t really have the chance to have a long chat. Darn! I even forgot to ask Yah about her children!!

Off I went to look for SN at room 11 – that’s where I usually find her. But she was not there. I then went to look for her in room 9 – the room where we usually have our counseling sessions; as sometimes SN may be there to explain to the patients about their medication. But SN was not there either – just the pharmacists. Luckily when I asked the pharmacists where SN was, another nurse happened to pass by behind me and told me that SN was in room 12. Apparently there were so many patients that day, they had to use room 12 as well for the HIV cases.

When I got to room 12, SN was explaining to a patient about his medication. She stopped when she saw me as she knew my presence there must be to enquire about any of the HIV patients. I was told that Hamid was outside with his mother and it would not be too difficult for me to find him as he was the only one on a wheelchair. When I asked about Kak Som, SN told me that Kak Som was warded in ward 8A (or at least that was what I heard lah!).

Then I went back out front to look for Hamid and his mother. I saw one guy on a wheelchair and an elderly lady sitting not far. I figured the elderly lady must be his mother but I couldn’t be too sure. So I went to speak to Hamid first and asked for his mother. True enough, it was the elderly lady sitting nearby.

When I introduced myself to Hamid’s mother, calling her makcik, she instantly remembered me as the lady who had called her earlier. She kept referring to herself as Opah no matter how many times I called her makcik. Ah well, Opah it shall be then, even though eventually I found out that she was actually 2 years younger than my own mom (although I have to admit, she does look older).

I asked Opah who else stay with her other than Hamid.

“Dengan Atok lah, tapi Atok dah umur 80 lebih, dah tak larat nak buat apa dah. Ada cucu makcik sorang, tahun ni tingkatan 5.”

So, Opah’s husband is still alive. And she also has a 17 year old grand-daughter staying with her. The grand-daughter is actually Hamid’s daughter. Apparently Hamid was married before and when they got divorced, Opah took care of the daughter.

When I asked Opah about her source of income, she said, “Entahlah, tak tau Opah nak cakap. Kadang-kadang ada, kadang-kadang tak ada.” Atok used to do some kampong work to make a living and now that he is already too weak to work, they no longer have a proper source of income. And with Hamid’s condition, Opah can’t rely on Hamid either to make ends meet. I then asked if Opah had any other children. She seemed reluctant to answer that question, but she did finally say that many of them had passed away.

Opah doesn’t seem to be getting any welfare assistance either although I personally feel both Atok and Opah should qualify for Bantuan Warga Tua as they don’t have any of their children taking care of them. I suppose the welfare department is not aware about of their situation while Opah herself doesn’t know how to get help. My responsibility now is to bring up the matter to the welfare department.

I told Opah I’d try to arrange for some help but at the same time I told her I could not promise her anything as it was not up to me to decide who gets assistance and who doesn’t.

I spent about 15 minutes talking to Opah, after which I headed back to my office. It wasn’t visiting hours yet so I figured I’d come back later to visit Kak Som at the ward.

After my asar prayer, I went back to the hospital. This time, getting a parking space wasn’t too bad. I headed straight to ward 8A, hoping the list of patients would be displayed outside the ward (usually it is) but was disappointed to see the list empty. I went in, looking from bed to bed for Kak Som but couldn’t find her name written at any of the beds. Finally I decided to ask one of the nurses, but since the name I mentioned didn’t sound familiar at all to the nurse, she decided to check her list. Nope, no such name. Even if Kak Som was discharged or transferred to another ward, they would still have her name in their records. Either I wrongly heard SN or SN had mistakenly given me the wrong info.

I tried looking for Kak Som’s name in 8B – still no luck. So no, I still haven’t had the opportunity to see or even speak to Kak Som. I will have to check with SN later.

I guess I am not fated to meet Kak Som yet...