The Chronicle of Mak's Illness - Part I

PROLOGUE

My mind has been going round and round, at times in circle.

And I am still not seeing light at the end of the tunnel.

Obviously, I know I would not get anything out of this mind-less activities - the pun was intentional. To see light at the end of the tunnel, one has to travel in straight line, and not in circle.

I have the been reflecting of events in the past 2 1/2 months, and they left me wondering, puzzled and bewildered. We aren't sure (yet) of what inflicted mak. A week after her death, we are still in the dark. We know a bit more now, bits and pieces, but the final jigsaw may not be forthcoming.

It may not come at all - for that we need to do post-mortem on her, which was not part of the plan.

For closure, I would like to know. For our own health, and that of my siblings, I need to know.

As I have mentioned, even after Mak's illness took turn for the worst, I was still of the opinion that Mak would get well. After all it was (only) infection. It was not (even) terminal. It was not the most difficult things modern medicine had knowm. Nothing that antibiotic could not handle. She was on Tienam at Ampang Puteri, supposedly a potent, if expensive, antibiotic.

But it did not work.

There was an underlying condition that would not allow Mak to get better. Was it cancer? Was it some form of blood disorder? Mak was adamant at Ampang Puteri that she did not have cancer. There was no indication from her siblings, or mother (nenek to us), that they were, or are, afflicted with any form of cancer.

We would like to think that we are a cancer-free family.

But now that the reasons of Mak's illness are not known, I am left puzzled. 

And bewildered.

Hussein Onn (1 July 2012)

On 1st July 2012, a mere 2 1/2 months before she passed away, she was happy and healthy at my house. We had a small thanks-giving feast as her two grandsons were embarking fresh initiatives in their lives. She was seen chatting with her sister, and children. I did not see whether she was really eating, but there was ample of food for her eventhough she was not a fan of lamb, nor nasi mandey to be honest (it is too dry for her taste, she told me).

Other than looking tired - she even slept mid morning that day, but I thought she looked healthy. And very normal that day (week).

Mak napping mid morning after the the lamb went
on the panggang. I did not think this was abnormal
though.

It was about 3 pm, when Maksu and family arrived and by then Mak was her normal self. Or so I thought.

Mak was all smiling watching the antics of her grandchildren, as seen
with Aishah and Tajuddin. She was seen as a bit more serious
throughout the day, but I attributed it to her being tired.

From there on, my memory starts failing me. How long were she in my house? Where did she go after staying at my house? As far as I know, she did not return to my home, until the day of her own funeral.

Mak with her sister and KSham. She was attentive, listening
to her sister. But she is still ok then. There was no complaint
about her health failing, not abruptly anyway.

Hospital Tengku Ampuan Rahimah Kelang (Thursday 19 July - Saturday 21 July)

When she collapsed in Shah Alam, and subsequently admitted to Ampuan Rahimah hospital, while I was not there during the initial period at HDU etc, she was her jovial self at the general ward the next day. I spent a whole day there with her - I remember that very well since I had to ponteng solat Jumaat to do that, only to find the I could even see the mosque, and hear the khutbah from mak's ward. I spent another half day the next day - after visiting Cikgu Wari at SDMC, before she was discharged that Saturday afternoon 21st July.

We watched with sympathy her Indian next door bed-neighbour, who was pregnant, but she was afflicted with a severe case of epilepsy.

She was cheerful and looks healthy on the first days of Ramadhan. I had a breaking fast session at my sister's in Shah Alam the next day together with Mak (Sunday 22 July).

Actually, I was at Sukarno Hatta when I was informed of her admission. I was preparing for the worst actually, but upon arrival, she had stabilized. I was so glad that she was all smiling when I saw her, and I believe she was all smiling when she left the hospital.

She had collapsed due to hypo. So I thought there was nothing serious. A common condition for those with diabetes. Nothing hot milo cannot help!

But one thing we were told at Ampuan Rahimah, which we did not follow up is the cancer marker test HTAR was doing for Mak. They were looking from this perspective when informed of Mak's daily battle with fever. In other words, we were told quite some time ago that there could be some underlying problems with Mak that would cause her infection - and fever - to persist. The test itself was supposed to be completed in Sept, and Mak was supposed to have an appointment at HTAR for follow up review.

(Mak at this stage was in good health. I even managed to visit HCM City with my family, and Mak even sms-ed me asking whether I had made it there. I replied, informing her that I am in Vietnam. So at this stage, there was no worry about her health.)

Hospital Ampang Puteri, Ampang (1 Aug 2012)

After she was discharged from Ampuan Rahimah, I am not sure when she went to my sister's home in Ampang. Another sister (in Australia) was pestering mak about her knee, so KSham asked if I cold help her bring Mak to an orthopaedic at Ampang Puteri. That was the 1st of August. "Mak cik," the surgeon exclaimed, "For a 73-year old, your knees and legs are in very good condition."

That was his verdict after doing a series of tests on Mak.

"But since she has diabetes, she should be brought to an eye specialist to have her eyes examined," the doc told us.

From him, we learned about the severity of diabetes. The nerves on the legs, the internal organs, and the eyes may all be affected if one has diabetes. I did not know that, I learned many things about diabetes from an orthopeadic surgeon.

Funnily.

He gave some vitamins, and something to increase mak's appetite. So while we were waiting for the pharmacy, we looked around for her wheelchair. She can walk on her own, but not for long and only for short distance, so it seems natural for us to start looking for one for her. We bought some mihun goreng at the lobby (they were already selling kuih raya on the early days of Ramadhan), and left for home.

With her being given a clean bill of health, knee-wise that is.

I spent 15 more minutes with her at my sister's house, before excusing myself to go back to office, and within 10 minutes of sitting down (at the office), a text message from my sister informing to come quickly as "Please come. Mak jatuh."

As I was driving on the MRR2 heading to Ampang, I had thought that my sister might be lying to me. I thought Mak had gone, and that she was trying to be kind to me by not informing, or giving half-truth statement. I was getting teary - while I was driving, but to be honest, if she had gone by then, it would have been easier to accept it as I had given her one of our best services for her, minutes earlier. I was preparing - psyching myself - for the worst.

When I arrived, I saw her lying flat on her back, but she was conscious. I was relieved. By then, KSham had called for an ambulance and her neighbour doctor, who quickly concluded that she did not collapse due to stroke. But she was in pain due to her fall. A couple of times she even throw up, while being carried to the ambulance.

But help was on its way. Soon she was on the way to Ampang Puteri.

Hospitalization at Ampang Puteri (1-13 Aug 2012)

Again, hypo was the reason of the collapse. She had not eaten much that morning and by then time she had her mihun goreng, it was too late. She had wanted to go to her room, while my sister had gone to her room (leaving her alone at the living room). That was the mistake - Mak could not, and should not, be left alone at all.

That was the start of day that Mak was never left alone again, until the day she passed away.

So with her room not yet ready (she spent about 2 hours at the day bed, and she was getting restless), we pestered Ampang Puteri - at Mak's behest - to give us something that's available (i.e. upgrade her), so Mak was accorded a VIP suite that day upon admission. I guess it was her children enjoying the facilities better as we were all there. We were feasting in the dining room during the breaking of fast. The foods were nothing to shout about - nasik bungkus mainly, but hey, we were in a suite we thought was priced at RM1,000.00 a night (later on we found out that it is actually about RM600 a night).

Mak is a bit more cheerful after her admission that day, even watches
the news with us. She was not critical at all while at Ampang Puteri,
but there was no doubt that she was ill.

We had thought of continuing at the VIP room, but we decided against it later. We thought we should spend the money on medications and tests. There is nothing a normal single-bed room could not care for her.

A suite fit for VIP, but it is nasik bungkus for breaking of fast
that evening. No complaint I guess, it is a new experience of berbuka puasa
with Mak at the hospital, an experience that we will undergo again
and again the next few weeks with Mak. This is taken on Aug 1, 2012.

So all in all, she spent 12 nights at Ampang Puteri. It was a very long 12 nights and 13 days for many of us, obviously more so for Mak, and we took turn to care for her. She continued to have her daily fever, and daily recovery; she continued to have vertigo. "Mak pening," she would tell us. "Mak pejam mata, dan jangan gerak," we responded, holding her still at the position whem the vertigo happened. But she did not show anything that would give us an indication that this was it; that she would be leaving us very soon.

I thought initially that she would be hospitalized for a couple of days; soon days turned into weeks, and I was getting edgy that she was not showing any sign of recovery. The doctor had changed her antibiotic multiple of times, and each required a couple of days to see the effect of the new medication, but Mak continues to have fever on a daily basis.

We weren't heading anywhere with Mak's illness, except that I now know a bit more about antibiotic - Tienam and ciprobay. I have no idea why they had to name an antibiotic after the country Vietnam! ;)

I would normally be at Mak's side early in the morning  - about 7 am to be precise, and I would normally do the day shift. Typically Mak would still be asleep when I arrived. I did not think twice about being there - normally I don't have to do much anyway, but was hoping my presence would give her some strength. Someone from the family had argued that the reason we put her at Ampang Puteri (a paid private hospital) was that we can rely on the nurse to do their job and take care of her, but even at this stage, we knew Mak wanted her children to care for her.

24 hours a day.

It never crossed my mind that she was demanding too much out of her children. I thought that that was the least we could do. She has 12 children, so if we were to take turn, it would not be a chore at all, but will be a great change of pace and life for many of us, and a way to show our gratitude. Sharing the tasks of caring for mak would make it easier for everybody.

It is not everyday (or everyone) we were presented with such opportunity. I didn't think of it that way then; I was only doing it for her, because she is my Mak. But in hindsight, Allah had given us - her children - our last chance to care for someone who had cared so much for us throughout her life.

Unconditionally.

And she would know it if you were not there. Even at night. So don't you just slip out - you better let her know if you need to go down to get coffee or newspaper. Oh, anyway newspaper is hand-delivered everyday, so you don't need much other than to just keep her company. Just sit there and read the newspaper. Keep her company, and helped her when needed, or when asked.

Or chat with her; it was not too much to ask, was it?

Mak finishing the satay Akmal bought her. Perut, ayam for her -
at least 4 cucuks I can see in her tray. I think she finished her fruits,
and the homemade bergedel too. Her two daughters can be seen preparing
more meals in the background. This is taken on Aug 5, 2012.

At this stage, Mak was still ok with her food. She was eating the bubur nasik KSham cooked for her. Eagerly. She thought it was good. And it was good. On the other hand, we complained that there was no menu to order at Ampang Puteri, so we can't instead shared her (hotel) food ourselves. But there was ample of good good nearby and elsewhere. And De Palma Ampang also on a daily basis offered Bubur Lambuk, so one day I took a couple of packets home. They are so so. One day, Mak asked for satay, and I told Akmal to buy them in Kajang for his nenek. That evening I thought it was one of the best buka puasa we had with Mak for a long long time. To me, it was the highlight of Ramadhan (2012) to be honest. Ample of foods - satay, Kenny Rogers and home cooked delicacies.

And of course, there was Mak.

K Sham and family, my family and I, Aishah and Tajuddin, and Farah and family were all there for buka puasa on Aug 5. While we did not have the VIP room anymore, we used whatever extra room beside her bed (i.e. corridors) to have our breaking fast meal. I am sure Mak was happy at that point in time - her children and grandchildren having meals at her hospital room, next to her bed.

Just beside her bed, her three cucu are waiting for
the time to breakfast. Satay and Kenny Rogers
for them that evening. Aug 5, 2012.

That was not the only buka puasa with Mak. My family and I had had another buka puasa with Sarah cooking Laksa johor which she ate too. That was another good private session with Mak. I am sure individually KSham, Ani, or Aishah would make buka puasa a more joyful events for Mak.

On a daily basis.

They spent more time with Mak than I did, to be honest. For that I am thankful and grateful to them.

All in all, in hindsight, I thought it was a rewarding Ramadhan in term of caring for Mak, and having buka puasa with her. If she was living in Taiping, we would not experience this, or may experience this only in the later part of the month when we returned home for Raya.

For that, I am a satisfied son.

But Ampang Puteri kept on changing her antibiotic as they seems to have no effect on her, kept on doing MRI, CT Scan and many other tests that at times they seems redundant, as they yielded no new information about her health.

I was getting agitated, and beginning to think that APSH was getting a bit incompetent in getting to the roots of Mak's illness. 

"We need to get a second opinion - very soon," I told KSham. "We are not getting anywhere with Ampang Puteri."

There were many things I did not like at Ampang Puteri. They wanted to do X-Ray on Mak, so the nurse went in to wheel Mak out to the X-Ray lab. But Mak was complaining that she was tired and didn't want to go. 

So I told the nurse to "please bring the X-Ray machine to Mak's room!"

"Tak boleh. X-Ray department suruh bawa Makcik kesana," the nurse tried to justify their action.

"Kalau Ampuan Rahimah pun boleh bawak XRay machine pergi ke pesakit wad biasa, takkan Ampang Puteri tak boleh? Mak kata dia tak larat," I was beginning to question them. I was adamant that Ampang Puteri could do better to lessen the pain and agony of their patients.

"Hanya doctor yang boleh authorise X-Ray machine di bilik pesakit," kata nurse lagi.

"Then call the doctor for me; I will talk to her." I was beginning to get irritated. At Ampuan Rahimah, I saw it with my own two eyes how the X-Ray technicians wheeled the machines doing X Ray at the normal ward itself. "Anyone pregnant?" they asked other patients and guests in the vicinity, before doing the X-ray on the patient in her own bed.

You are talking about first class service in a third class ward.

If I were the Health Minister, I would tear the Ampuan Rahimah Hospital building down. The building is an eye-sore, but it is a wonderful hospital, manned by wonderful and hospitable staff. I have no complaints the 3 days Mak was there. The doctors were attentive; nurses served patients with a smile.

But here at Ampang Puteri, Mak was not getting the services I thought she deserved.

In the end, Mak's X-ray was done in Mak's room. So it can be done; so it was not a problem. But you had to fight for it. If that was not sheer laziness on their part, then I don't know what that is. If they are hiding under some SOP, I would like to tell them to get rid of that SOP. The staff manning the facilities should let go of their ego in wanting patient to visit them and do their job in the comfort of the room.

It is about the patient, and not about them.

But that was not my only complaints. "Give us a couple of days for us to test the new antibiotics," Dr Shakinah would always tell us. It was always experimenting with drugs, or it seems that way. They need more time to do this and that.

And Mak was not getting any better.

The doctor herself was puzzled at Mak's non-responsiveness to the treatment.

That was certainly not a good sign.

(to be continued)