Testing testing.....
1 week into my mothers hospitalisation, & things seem to be working out pretty OK.....
The doctors have proposed my mother be put on a trial run of a new drug, currently going through testing before being approved by the FDA. It's supposed to be a superior anti psychotic drug that assures effectives, yet producing little or no side effects, or so the pharmaceutical company tells us. The programme is being supervised by University Hospital and is headed by some Professor who will facilitate the programme.
The hospital gave me a 17 page long Informed Consent Form for my mother so sign, detailing all the medications & observations that will be done during the t6 week long trail. I read it long and hard, and discussed it with my brother and some other concerned people, and the way I see it, some of the pros and cons:
Pros:
- Full cost of hospitalzation for the next 6 weeks fully covered by the Pharmaceutical company.
- Free extensive full body medical check up for my mother, including ECG, full blood test, urine test, psychiatric evaluation, movement test & medical care as long as she is on the programme.
- New cutting edge that (supposedly) will be superior to what is on the market, with successful test already completed in the US, Europe, and only now, Asia.
- Mother will be watched like a hawk, every observation written down, and we will have full access to these information.
- Reduce my financial burden & give me adequate time to fine a good nursing home for my mother.
- For a change, doctors will be interested to see her progress, instead of us chasing after doctor for a remedy.
Cons:
- God knows what sort of effect this will have on her. After all, its not FDA approved.
- What about any long term effects if the drug proves harmful? The Pharmaceutical company is only covering immediate medical treatments.
- It IS an experiment, and if un-effective, we will just have to go back to square one and start over again - waste of our time, and not fair to my mother.
- Dosage is random i.e. there are 4 possible drug strengths that will be used. More on this below.
Now, you tell me, how do the odds look?
Ready, the great thing about it all is just 3 points. My mother will be receiving full & diligent medical & psychological care & observation. She will get a full body check up, which is darn expensive if we did it ourselves on the outside. And lastly, the drug us FREE, and supposed to be the latest on the market. So far, most people I have ask think that we should go ahead.
But maybe its just the uneasy feeling of threading on unfamiliar ground, but I still have that nagging feeling of uneasiness. Just imagining the worst case scenarios, what will happen if the drug turns out to be harmful? Permanently? No doubt, the company will nurse her back to a stable condition before returning her to us, but what if she can't go back to normal? But realistically, she has been neglecting medication for almost a year now, and I suppose things can only go up with her taking medication. Better some sort of medication than no medication at all.
But the idea of enrolling my mother seems to be a little cold & heartless. As per the programme, the test subject will be randomly assigned 1 of 4 possible dosages. Tablets with 120mg of the compound, 80mg, 40 mg or none at all, called a placebo dose. So basically, during the 6 weeks of observation, they would have no idea what they are giving my mother. It could be a proper dose, or it could be a placebo, in which case, she would show no improvement and be taken out of the programme. The placebo dose is supposed to be sort of a control I guess, kind of like what you need during a experiment in the science lab. After the 6 weeks, if effective, we would be enrolled in a 22 months programme, where she will continue to receive the new drug, at a regulated dosage this time. Hopefully by the end of the 2 years, the drug will have already been released into the market.
In all fairness, I do not think the doctors, or the nurses or the government are being crazy unscrupulous in allowing a test medicine to be given patients. In fact, it is perfectly common prior to a drug being released into the market. I took the whole weekend to finally come to a decision my heart felt comfortable with. We will go through with the programme, with the hope that it would indeed be effective for my mother. After spending half my life battling this problem, its high time we tried something different. Other drugs seems to work, but only for a while.....It is with this hope for the future that we commit this decision....
Was lost... now found.
What a weekend it was.....
Friday, my brother and I both received calls from my mother again.. she was in KL again... after weeks and weeks of calling us from melacca and fearing the worst for her, she was finally back in familiar territory again. We knew she was somewhere in KL, but she couldn't spell exactly where she was.. she still was not in the right state of mind...
My heart was disturbed throughout the day, and through the night.... couldn't sleep much. How is anyone supposed to get a good night sleep knowing your mother was one somewhere nearby on the street? I sat up the entire night, just looking at old photos and videos from my journeys last year in the UK. Those were really happy times for me...... with little care for all this sort of problems.... guess I was just trying to think of anything else except of my mother... trying in desperation to inject some cheer into my gloomy heart. It worked for the most part.. and I stayed up till 6.00am just working on a slide show I was trying to compile of my times there... When I finally felt too tired.. I switched off the lights and went to sleep.
An hour later... I woke up. Awaken by the sound of my phone ringing.. Who could be ringing at such an early hour on Saturday morning? Of course. What was I thinking? It was my mother. "Where are you?" I keep asking her. "I'm at a signboard, next to a seven eleven" she said. That could have been anywhere. I didn't quite know whether to start looking or just to sit tight. But somehow, whether it was God at work, or just by sheer dumb luck, someone gave help in a time of need. I received a call from a stranger. A lady. She said she was with my mother, and that I should come get her. I think she was a passer by and my mother sort of just flagged her down. She told me she would leave my mother and one of the train station in KL, on Jalan Hang Tuah. I said Ok, and left immediately.
I wasn't even quite sure how to find that station... but just went with my instincts. I guess I was guided somehow, and amazingly 20 minutes later I arrived at the station, after asking some directions from people. And there she was, just standing there by the entrance, waiting like I told her to, She looked skinny, she was wearing some unfamiliar cloths again, and she was still walking around carrying her things in plastic bags. I had called my brother along the way, and since he was on his way to work, I told him I would handle this on my own. How I was going to do it was lost to me, but I knew this time round... I had no support. She gave me a hug, and though I was only to happy to receive it... her entire body smelt..... a result of not bathing for months. Her nails were long and dirty, her feet were black.. and it looked like her slippers were cutting her skin.
She was not aggressive and she did not resist. I held her by her shoulder, the first touch I have had with my mother for at months now, and just told her to get into the car with me. I brought her to my car and sat her at the back sit. She asked why did she have to sit at the back, but I told her don't worry about it. But the truth was, I had switch the child safety lock on for the back seats, so that she could not make a runaway if she resisted what I was about to do next.
She spoke a lot while I was driving, but I kept mostly silent. I did not tell her I was planning on bringing her straight to the hospital to be admitted. God knows how she was going to take it this time. So I said nothing and just drove right straight into the Emergency department of University Hospital in PJ. Surprisingly, she had not tried to run away yet. I told her to wait in the car while I went to do the registration. I told the medical attendants to watch over her to make sure she does not run away.. and they instantly recognized her as a psychiatric case.. I glad this time I did not have to go through any trauma or a struggle. I watched from afar as the attendants tried to coax her into getting onto wheelchair. When she refused.. the 2 attendants went away.. and 6 came instead.. with a stretcher bed.. The opened the doors and finally managed to get her on the bed. They used cloths to tie her four limbs all tightly to the bed.... and was brought into the hospital. After parking my car, I joined her and sat there for 45 minutes as the doctor on call made his way to see us. She tried to struggle, and she started crying again, asking why I was admitting her into hospital again. But I felt no sorrow. In fact, for the first time in months, I finally felt that I did the right thing. The doctor came, and I again retold our story to this doctor, something I have done so many times, so much so that I even remember all the names of the medication that she used to take. The medical attendees and even myself held her down as the nurse injected her with tranquillisers & medication to sedate her. She was trying to fight.. but I guess the combination of the valium running in her veins and the sheer exhaustion of sleeping on the streets got the better of her. Within 10 minutes of the injections.... she was snoring loudly right there in the ward.
Not a very sightly thing to see.... But despite the lack of rest, and the tiredness of reliving the whole episode of admitting my mother into hospital again, I was at peace. Better here than on the streets I told myself. There was nothing much I could do but to let my mother sleep and for me to go home to prepare her things. I carried her plastics bags emptied them and put all her laundry to wash. Everything was either stinky or dirty. There was about forty ringgit in stuck in an empty egg tray she carried. A cigarette bud... a bolt (yes, as in bolt & nut), a shutter cock, a Mcdonalds cup lid, and a bun. There was a big blanket, a jacket & some dresses that looked more like it was for 12 year old girls that for a 52 year old woman.
She will be in the hospital for at least the next week or so, then it will be time to discharge her once she has stabilized again. We will have to think of what to do with her next.. .the only solution for now seems to be putting her into a nursing home for the mentally ill again.. even though it would cost us a fortune every month. Something I am not looking forward to. But there is no shying away from what we have to do... and even if it cost us an arm and a leg every month, we are still obliged to care for our mother in whatever ways we can. It is what any son would and should do for their mother. For giving birth to you, giving you milk from her body, nurturing you, protecting you, singing you songs to sleep and teaching you to tie your shoe laces, no child can ever walk away from taking care of their mother without ending up hating themselves.... and i have hated myself for walking away so many times that it has to come to a stop somewhere.
At least for now, I can go to sleep at night.. knowing she is safe in the hospital, under proper care.... and mostly that she is safe instead of being out on the streets. I know at least from now on... as long as it is within my power to give her care, I will not shed another tear in worry of her like I have done these past few months. Welcome back ma.....
Fearing the Worst
"Hann, I have no more money already." she said to me. "Hann.... are you OK?....... I........ tell your father....... make sure jynn goes to church......I.....I........." she mumbles on and off.
From the phone number, I know she's not even in my home town anymore.... somewhere in Melaka now.
What do you do when you hear that from 500 miles away? What is a son suppose to do when he hears his mother is absolutely penniless and wondering the streets. I am starting to see that this feeling of guilt and helplessness is going to haunt me for the rest of my life.
Sometimes I even amaze myself how I can just go on with my life as if everything in the world is just fine for me. I would get a disturbing call from my mother. i would know she isnt well. I would move away and try to talk to her the few seconds that she is on the line... then the line gets cut off... and I sit down at my chair again and resume whatever I was doing. I feel disturbed and worried throughout the day.. but beyond worrying and fretting, I do nothing.
On a deeper level, I wonder if I should be acting in a different way. Isnt this the sort of thing that makes you do something drastic? What would a normal son's reaction be in a situation like this? I wonder why I am not marching into my bosses office and demand an emergency leave and immediately drive 300miles to go make sure my mother is OK. The more I wonder, the more I realise I do not have the answer, or perhaps I already do know the answer but am not ready to acknowledge it; that I am taking the easy way out convincing myself that whatever I do will be futile and no use.
When I realised that she stopped sticking in the same place anymore, I got worried. My mother is on the verge of becoming a missing person. Every single time she calls, I will ask her where she is.. But she never feels it is important to answer me. Gone are the days when she would at least stick in one place. She is now truly a wanderer... refusing to settle down in one place.
Amazingly, when I am alone in bed at night, I still think of her. My heart aches at the thought of her. I think back on that night she came to stay in my place, how she was so tired of exhaustion she just slept right there on the floor, how I just sat there beside her, thinking what a useless son I have become, touching her rough and worn out skin. I wished with all my heart that all these things did not need to happen... I still do.
I have not lost my mother totally yet.. But the feeling in my heart is that I am at the verge of it. How long will she continue like this? How long before she disappears completely? The misery of that day looms at the back of my mind every time I speak to her. When she calls, just like she did today, I try my best to really listen to her voice. There really is no sense in the things she is trying to tell me, but never the less, I listen intently... because I do not want to forget her voice. I am terrified that one day, when my mother long gone, I will forget her voice. Trust me when I say, there will never be another voice, smell, feel or touch more special to you than that of your mother. I know there will never be any person ever that will call my name the way my mother does, or hold my hand the way she does.
I dread the day I wake up in the morning having to face the fact that I have no one to call "ma" anymore, never see her, hear her voice, hold her hand or hug her. Every time she calls, deep in my heart, I pray that it is not the last.
Goat Farms to Vege Farms
At the end of last year,, my father was all the craze for opening a goat farm. He was sick and tired of his job and wanted to go into goat farming himself. When we visited him down in Kluang, the first thing he did was to bring us to a nearby goat farm to try to get us all excited and supportive of his idea. Of course, knowing only too well my father's 'hangat-hangat tahi ayam' style, we knew it was just a matter of time before the excitement sizzles out of him, and stops having these unrealistic ideas.
For a long while there, it seemed almost as if it wasn't going to fizzle out, and that he would really go through with it.... But it did eventually. He quit his job in johor and came back to KL, to start another school canteen business with his wife. Not that it isn't profitable, only that he never seems to get a cent out of these businesses (usually goes all to the controlling wife).
My father has an extremely complex love-hate relationship with his wife. He hates her quite a fair bit, and she seems to love herself quite a fair bit too. She controls all the money and only gives him what ca be described as just scraping the bottom every month. She doesn't talk to him for days and treats hi more like a worker rather than a husband. Sometimes, I really wonder just what this woman has done to my father that he is willing to put up and take all this crap from her. I guess in his own little way, my father constantly tries to search for ways to be independent and free from her control, and I suspect ideas like having a goat farm of his own, totally un-reliant on her was one of his 'plans of escape'.
Latest in his long list of business ideas is to have a vegetable farm somewhere on the way to Pahang. He's been talking to some local Pak Haji or something like that and is seriously exploring the idea of setting up his own vegetable farm, starting out by leasing, developing empty land and planting local vegetables to sell. he pitched the idea to my brother and I though we remained stone faced throughout the conversation. I was tempted to just highlight the numerous business and career ideas that he has brewed over the past few years, none of which has ever been successful or even seen the light of day. But I held my tongue and let him have his say. The real problem was about money, and where he would find the capital to raise the amount he needs to get started off. Never mind that we thought he was a complete new comer to this business, hasn't planted so much as a bean sprout in this last ten years. He bought a small flat in KL many years back, and has been promising my grandmother for over a decade now that the house will go to my brother and I. Main cause of worry being that now that he is a muslim, whatever property he might have will automatically go to his muslim family / the government without question. In wanting to honour what he said, he intends to transfer the title of the house to our joint name. At the same time, he wanted to take up a loan using the house as collateral.
So effectively, he wanted to transfer the house to our names and for us to take up a loan using the house in our names for him to use the money as capital for his business.
Well, to be fair, the house is his anyway.. and its really up to him if he thinks he wants to use his property in that manner. The problem was that he is asking us to take up the loan in our name. So legally speaking, WE owe the bank money, WE are obligated to do the repayments, and WE will be blacklisted and our credit standing affected should HE fail in his business. Worst part of it all, the loan will take another 20 years to be fully serviced. Does he intend to do this business for the next 20 years at the age of 52? Is he confident that he will generate enough revenue to repay the loans?
Now, it all sounded a bit too riskly and, dare I say, silly thing to agree to. So 2 days later when we met up again, I said to him point blank that we were uncomfortable doing it. Not that we were not willing to help.. but hey.. I can't even get a credit card to my name yet, what more getting a 50K loan. Plus, what if in future I wanted to get a loan of my own to buy a house of my own? The banks will see that I have already taken up a previous one, and thus adding to my inability to take on additional debts?
So I guess he conceded the point.... I told him it was OK if he took up the loan in his own name.... but personally, I still felt that it was a big risk to take knowing his character. I said that whatever it is, please think it through THOROUGHLY on all aspects before making such a commitment. I just hope he knows what he is doing.......
