Delaying Death, Prolonging Pain

I stop short of defining what is Cortico Basal Ganglionic Degeneration in my last entry.

I'm not going to bombard with some chim medical terms here.

It simply means the loss of nerve cells in the brain, the shrinkage of of some areas in the brain. The areas that shrunk is called cerebal cortex and basal ganglia. Therefore, we have this disease called Cortico Basal Ganglionic Degeneration.

What this disease does to one is a slow and painful process, over a period of 6 to 8 years, where our body's command centre (the brain) refuses to function certain departments. It calls up the Movement Department 1st, eating into its grip, its balance, its control of one's limbs, jerking uncontrollably at times (just like Parkinson's) and ultimately, the whole body is motionless.

Then the Speech Department is next, making it unable to swallow, unable to talk, unable to eat or drink.

And the sad part is - the mind is still active, recognising faces, remembering the past, understanding the present. Its like someone being kidnapped, being tied up and gagged, trying hard to free oneself, yet unable to make a single movement, a single sound.

This is rare disease. No one knows the cause. No one knows the prognosis. None of the pharmaceutical companies has any drugs to offer, not even one under clinical trial.

What do you think will happen to the organs since the body is practically dead? The liver? The lungs? The kidneys? Of course, they will listen to the Command Centre too!

Death will likely be caused by pneumonia.

Since there is no drugs for CBGD, why am I spending hundreds of dollars every month on medication for my mother? I have medication for Parkinson's, the closest medicine to CBGD. I have one medication for anti-spasm. One for gastric ulcer since she is on gastrostomy (feeding) tube. One for brain supplement. Brain supplement? I can't believe I just said that. Another one, again for Parkinson's and thanks to the patent protection, I'm paying $3 a tablet.

Does all these medication help her? In one way or another? The answer is NO.

As the name of the disease says it all - DEGENERATION. It will get worse and worse and worse, until death.

Then, I wonder....

Am I spending money buying time for my mum?

Or am I spending money prolonging her pain?

Or am I spending money delaying her death?

There is no cure, no answer, only one destination - DEATH. And then she will be release of the suffering.

As for me? I have no cure, no answer, only one objective - TO MAKE HER SHOW ONE SMILE ON HER FACE EVERYDAY.

Cortico Basal Ganglic Degeneration

This is a big word. This is a long word. None of it I understood when I 1st heard it. I had to ask the doctor to spell it and write it down for me.

Cortico Basal Ganglionic Degeneration. In short, CBGD.

But the word "degeneration" doesn't look good, doesn't sound good either.

This was 5 years ago.....2002, when I was "told" of my mum's diagnosis.

No X-ray film to explain what is it.

No MRI or EEG results to share, although they were taken many times.

No causes of CBGD discussed, as there is no evidence of its causes in this current universe.

No discussion of treatment, as there is no drugs or therapies invented in this current universe.

And there I was....."Har? Si Mi Lai Eh?"

The next thing I was instructed to do was to make appointments for the following:

• Movement Disorder Specialist
• Physical Therapist
• Occupational Therapist
• Speech Therapist

I drove from the hospital carpark, picked up my mum, drove her home, thinking of how am I going to juggle my job with these appointments, each lasting at least 3 hours? (Worst case scenario of 1 hour of waiting, 45 mins of treatment, driving times to and fro, loading and unloading my mum.)

And I was thinking, she will get well......

5 years on....She is bedridden. She lost her speech. She has a gastrostomy tube.

She is defenceless.

After my trip back from Hokkaido, I drop by her place the next day to make sure everything is going alright, that she is passing motion, that her temperature is under control, that diaper and milk powder supplies are still sufficient. And most importantly, to give her a lavender scented pillow and a charcoal filled pillow I bought for her from Hokkaido.

The next thing I knew.....my mum's caregiver told me that last week, grandma had asked both of them over to her place to celebrate her "temple's anniversary"..........which lasted 6 hours!!!

Wah.....fumes rising from my hair liao.....

6 hours?

With the crowd?

With the incense?

With the noise?

With all the sympathetic words passed on her by fellow "celebrators"?

My mum had never stepped foot into my grandma's "temple" when she was still well. Not that she is against Buddhism or what, my mum actually has an Avalokeshvara statue, AKA Guan Yin, at home. In short, my mum was never affectionately close to my grandma.

So, now that she is defenceless, she couldn't say NO in attending the anniversary celebration. She couldn't stop anyone in wheeling her to the "temple". She couldn't tell those people she doesn't need sympathy.

Well, probably she wanted to go....I dun know. But my guts tell me - NO.

Probably my grandma wanted her well, to pray for her recovery. But my guts tell me - NOT EXACTLY.

Am I being skeptical? Probably.

When someone at home is sick, it is not only the sick person who suffers. It is also the people around her, the people who loves her, the people who denied that she is sick that suffered together with her. Everyone of us has our own thoughts and our own way of handling the situation. Somehow, these thoughts always go parallel.

She is now defenceless.....and everyone wants to be her knight.

Technology Rocks

Whenever I travel, I seldom take pictures. I dun even bring a camera for that matter. In fact, I dun even own one.

This is my 1st time I ever took soooooo many pictures while vacationing. Thanks to this blog, I borrowed a camera from my sister-in-law, I took more than 600 photos, 30 mins of video, add in music and burn them in DVD.

I would have never imagine myself doing this!!

I was, still am, an IT idiot.

Now, look at my amateur works....tested in Hokkaido....







With all the pre-programmed options in the camera, what can go wrong? We dun have anymore excuse that we dun know how to load films!!!

And this is my virgin video!! Took me about an hour to figure out which video format and how to upload to Youtube.




By the way, the toilet bowl comes with a music option, spray pressure option and a heated seat!!

A heated seat??!!!

Why didn't I get that when I was in UK? And US? And I think the washing option is just perfect for Malaysia!! Everytime when I'm in JB or KL, the public toilet always has this water hose and the floor is always wet!! I just loved the toilets in Japan - Clean, Dry, Smells Good and can listen to music!!

I mean.....let's look at it this way. The Japanese put in so much effort in the tiniest thing they do. Besides toilet, just take the food they prepare. So much details and presentation.






Kudos to them.


We get these in Singapore too. But somehow, we are blinded by the rush everyday. And until we are out on a vacation, our eyes start to open and "see".

Honeymoon Hangover

Back from my honeymoon - Hokkaido, Japan. A good 7 to 8 days holiday. One thing good about holidaying in Japan is the inaccessibility in gettting in touch with me if I dun have a 3G phone. Complete peace!

This is my 3rd time joining a tour. There are 21 people in our group consist of:

• Retired couples (or at least above 50 years old)
• Daughters and mothers
• Senior citizens with their siblings or cousins or relatives (oldest one is 75 years old and everyone called her AH MAH).
• Besides us, there is another pair of honeymooners.

It was a very good tour, everyone was hardly late (in fact, most of the time, they were early!) People are really nice and polite, offering to take pictures for everyone and anyone. The tour guide and tour leader were fantastic too.

The thing that caught me was the dominant presence of females!! Why dun I see a son bringing a father for a tour? Is it that males has lower mortality rate? Or is it that male has an ego thing that makes them uncomfortable to be living with another male in such close proximity within that small span of time? I wonder......

What is holiday without laughter? There were so much jokes and fun.

And suddenly, a thought came to me......Will I ever bring my mother out for a tour if she is still well today? This thought had been bugging me for almost the entire trip....and somehow my "Ang" asked me..."Will you bring your mother out for a trip if she is healthy and well today?"

Wah Lau Eh.......

Really so telepathic meh?

"Bring" in this context means "Paying and accompanying for the trip"

I looked at my fellow tour members.....They laughed when the tour guide makes some silly jokes which doesn't seems to amuse me. They shopped at practically every souvenir shop buying silly jewellery which doesn't seems to appeal to me.

If my mum hasn't been sick, she will be like my fellow tour members, laughing at some silly jokes, buying some silly jewellery.

If my mum hasn't been sick, I will bring her out for a tour.

If my mum hasn't been sick, I will probably shout at her.

If my mum hasn't been sick, I will probably not take care of her needs.

If my mum hasn't been sick, I will probably get frustrated everytime she peeks into my life.

If my mum hasn't been sick, I will not be a different daughter....

Mushroom

After eating days of comfort food of porridge and mee sua, my tongue is really really yearning for something else.

I rummaged through the fridge and the kitchen cupboards to find myself with not much options beside instant noodles.

Sianz...

I didn't give up....then in a tucked away corner of the fridge, I saw this recycled container from those take away hawker food. Well, inside was my grandma's handmade fried and minced mushroom stalks.

I totally forgot that I had this.

My grandma brought this over during her 1st visit to my new home. She knows I is LiiiKeee her mushroom stalks. This is her own concoction. We usually throw away the stalks of the black chinese mushroom, or either, we cooked them together with our dishes. My grandma will pluck them and keep aside. Until she gathers enough, soak them and then grind until look like "Hay Bee Hiam". And she will fry them till crispy! When I was a child, I would scoop the mushroom stalks into my rice, stir them up and finish the whole bow!

So I thought since the Italians can have pasta with just olive oil and cheese, I can definitely whip up a dish with fried and minced mushroom stalks!!

So, here....my lunch.





Although it may not look "wow", but it definitely tastes great. YUMMY!!!!

I is a mushroom addict!!

My home

After a full day of sleeping and resting at home yesterday, I felt much energetic now.

Had been lounging on my sofa watching Martha Stewart Show on how to decorate for Halloween.

Harro? Halloween?

That's like in October rite? Goes to show that this Martha Stewart show must have been at least 6 months old!! And yes, I dun have cable, I'm watching Mediacorp Channel 5!!

Back to what I was thinking when watching the show. I remembered when I was first living in the States, I was goo-goo and ga-ga about Martha. I regularly bought her magazine - Martha Stewart Living, bought her series of kitchen wares from Kmart. She even has her own series of paint in her name.

While reminicsing these memories, I couldn't stop but start to count how many homes I have lived in. And here's what I can remember as far as my brain can bring me.

(1) Toa Payoh

Well, I shouldn't count this as a home cos' I've no idea of it at all. All I knew was I was born there. No! No! Not born there! I mean I'm born in KK hospital (who doesn't in the 70s?). I was "made" there, spent my infant years there....no memories whatsoever. Knew that it was a 3 room flat. That's all.

(2) 5 room HDB point block flat

This move happened when I was 3. I loved this place. To my small body of 3 years old, the house seems huge!! I can cycle from one end to the other with my tricycle!

This is the house where I remembered my father most. He's a DIY man. He had a room all to himself for all the carpentry works, electrical tools, etc. We call it his "workshop". He had neighbours from the 2nd floor to the 24th floor as his "clients", fixing TV, radio, fan, bicycle for them. We used to walk down the stairs from the 24th floor to the 2nd floor, picking up electrical items that people would throw away during Chinese New Year. My father would fix them up and use it or sell it away. So, we have like 4 TVs at home at one go!! My father made all the built-in cabients at home, if not, it will be some upholstered pieces from our finds. I also picked my 1st "Play Mobil" set among our finds. It was FUN!!!

The neighbourhood was great too. We knew everyone. The newspaper vendor where my mother will get her usual dose of "Xin Ming", "Wan Pao", "Feng Cai" and "Xing Sheng Huo Pao". The provision shop where we get the usual ABC stout for my father and we get to chose whatever tit-bits we want. The Chinese Medical Hall which my father made all the pigeon holes to store the herbs. The fish shop where they sell fish and where we used to buy "Qiu Ying" to feed the fishes at home. Not to mention the photo-develop shop. My father spend lots of time there. He's an avid photographer. When we were young, my elder sister, younger brother and myself were his models! And guess where's the shot? The void deck!!

(3) Granny's Place

This is not an unfamiliar place. We spent our weekdays here before going home on the weekends. I call this my home too cos' I spend most of my schooling years here and there's so much people in this house. My mother has 7 siblings, all squeezed into this 4 room flat, and some with their spouse!! And us!! The Grandchildren!! You can imagine mattress laid all over the floor when preparing to sleep, morning was a rush hour for the working aunties and uncles. Everyone will be sitting all over the 2 big 3 seater-sofa, on the floor, stools, wherever you can find when "Bing Fen Ba San" was on TV. I loved to snuggle to my grandma. She has this smell that I like. But I was the tyrant in this big household. I got swords and guns to play with. I was my grandfather's and eldest uncle's favourite.

This was also the home after disaster struck. My mother, brother and myself lived in one of the rooms. To make us feel better, my mum bought brand new furnitures from IKEA. This was our little home in a home. Although we still had the 5 room flat, we didn't live in there for years. Life is different now. And we have to behave in this house now. I was 11.

(4) 5 room HDB point block flat

We were back! After a 3 years hiatus at my Granny's, we shifted back. This time with my aunt's whole family (her husband and son in tow). We kind of tore apart the whole house to accomodate the new arrangement. New furnitures, new curtains, new appliances and a brand new maid too! It was refreshing at first.....but I miss the old, especially those handmade furnitures my father made. I miss the smell. Afterall, those were what were left from him.

Life was different. We didn't get close to the neighbours. We shun away from the usual provision shops, the fish shop....eh?...the newspaper vendor is gone!! Besides school, I spent most of the time at home alone or with my maid. I had a lot of quarrels with my mum in this home. I grew apart from her. I grew from a girl to a lady. I fell in love with my 1st love here. I took my "O"s here. I spent less and less time at home. I had to leave home early for a 1 hour bus ride to Poly, came home around midnight after activities. I hardly see my mum or brother. That's the home where I grew further apart from my brother.

(5) Kembangan

I dun know what to write about this "home". I hardly spend time here. I was always busy with Poly activities. To make things worse, it was a 3 storey corner terrace house. I hardly saw anyone!! My mum's room was at the top floor, mine was second floor, maid is always hiding in the backyard. It was a house.

(6) Bendemeer

Strictly speaking, this was not our home. It was my aunt's. Now, its our turn to live with them!! An executive flat where I shared a room with my brother. Not much memories except that I graduated from Poly, started working.... All I could say was is it's a convenient place. 20 mins to Orchard by bus!!

(7) Bedok

Wah...this one came suddenly...out of the blue. Also dun know why my mum chooses this place. Si Ber far lor!! And have to take shuttle bus to the MRT station leh!!! Going to work was hell. But its huge. Two 3 room flat combined as one. I had the room with the attached bathroom.

Since I've already started work, I bought all my room furnitures with my own money. I painted the walls in stripes. I decorated the toilet. I was happy to have my own room. I was finally happy to stay away from my aunt, not that I dislike her, but just finally to call this place - home.

I didn't spend much time here cos' I left for UK in less than a year or so.

(8) Dante Road

My 1st home away from home. Cried like hell in that small cubicle. Missed my then boyfriend. Miss my mum. Aiyah, miss everyone and everything lah.

Everything looks gloomy in that room. It was on the 2nd floor and there were 6 rooms, 2 bathrooms, 1 kitchen with dining table and food lockers for each room, 2 cooker hobs, 2 sinks. Coincidentally, I had the biggest room in that flat. The room comes equipped with a basin, a cupboard, a bed, a writing desk and a bedside table. That's all. But somehow, I requested for a transfer. After a month or so, I shifted to another flat in another block, still in Dante Road. This time on the 4th floor. Although the room was much smaller. I like it. Its feels homey. I looked out to the window, I see chimneys, I see Big Ben. I became happy. This is the home I learned to cook, to look after myself, to buy grocery, to finally appreciate...... what is home.

(9) Brunlees House

Wah....this house didn't come easy man!! It was my last year in Uni. We were asked to give up our place in the Halls of Residence since we were the seniors liao. The Halls were given priority to freshies and we were left with finding our own private accommodation. I took 2 weeks of rumaging the "Loot", viewing tonnes of flats, depleting my money on staying in B&B everyday, eating out ....until we ran into an advertisement on this Brunlees House near our campus. This was my first house hunting experience....and not a good one.

Believe me or not, its a open house and it was renting out on a first-come-first-serve basis. When we were there, it was already filled with a lot of people!! With all the people rubbing our shoulders, we managed to squeeze into the house and..... bingo, we like it! We asked about the rent - 195 pounds a week. Without another second lost, me and my fren decided to take it. But guess what, when we approached the landlord, he said someone among the crowd had indicated that they wanted it too!! So how? He said whoever place the rental deposit first gets it. The other interested party already left to get money!!

Okay, we didn't have so much cash with us. We are students remember? And we were persistent to ge it. So my fren decide to rush down the ATM to draw the money while I stay with the landlord to "ward off" any potential tenants. Within minutes, my fren came back with the deposit!! And that's how we landed us a home. The moment we sign on the paper, the other interested party came back with the deposit!!

My fren later told me that he saw them (the other interested party) walking towards the ATM, at that time, he didn't know who they were. My fren practically walked pass them and while he was drawing the money at the ATM, they were standing in line behind him, queuing for the ATM!!! We were so close!!!

We had the whole flat. 3 bedrooms, 1 kitchen, 1 bathroom, 1 living room. I shared with 2 of my classmates. This place really feel like a home and because we had a living room (other frens were only renting rooms), a lot of our frens came and practically made it a "Common Gathering Place". They would gather here before catching a movie or before running down Ruby Tuesday to catch the football game. It was a home full noise and laughter.

This was also the home where I called home regularly. I got closer to my mum while staying here. I would walk to the nearest payphone to call her every week and she will be waiting for my call. We talked about everything. It was 1997, 1998. It was also the year of Asian Financial Crisis. Money was tight. Exchange rate of 1 English Pound to 2.2 Singapore Dollars became 2.9 Singapore Dollars. It was when I connected with my mum.

(10) Bendemeer No. 2

My mum decided to move...AGAIN! This happens only after months I returned from UK. It was a mess! I took care of the renovation of the new house. Basically, everything was torn down, mum gave me a big budget. She was proud when she saw the house ready. I was back living near town again. Yipee!!

It was a comfortable and cosy house, view was not blocked, overlooking the kallang river, wind is gusto..... I like it. I feel like we're living as a family again. My brother had almost completed his NS and spending more time at home, my mum was happier and I had a good job.

6 months later, I left for the States for 3 years.

Upon my return, I buried myself with work, clocking my Krisflyer miles, returning to this home only to sleep. This is also the home where my mum started to break things, started to yell......her sickness creeps in unknowingly, unnoticed.


(11) Guadalcanal Place

"Ulu and Big" is the word. 2 storey house with 4 bedrooms, 3 bathrooms, a backyard, a garage, a shed. Its beside a golf course, at times hearing the train passes by at a distant. This was my home for 3 years.

This was the home I learned to cook (better this time), to drive, to pronouce the word vase as "vaese" and not "varse". I transformed from a lady to woman.

This was the home I embrace with love, didn't know that I would be disappointed by love itself. Realised that love is not all, not everything. Love changes. I was tortured by it, beaten by it......and relentlessly, I returned to Bendemeer No. 2


(12) Bukit Panjang

This was a house-sitting excuse to move out. To live alone. To be alone.

Again, I embrace the big change. To the extent that I got myself a brand new sports car! Thinking that changes is good and that the old and bad can be forgotten just like that. A brand new start!!!

2004 turn out to be a brand new start indeed! I got to know my "Ang" during this period. The house helped and contributed our courtship in many ways. He would place a bouquet of flowers at my doorstep, surprising me. He would pop by with take-away dinner knowing that I would survive on instant noodles again. He gave his confession of love in party held at the place. He saw me in an apron for the 1st time. He saw me doing laundry for the 1st time.

While living there, no matter how hot the weather was, all I felt was the breeze kissing my face, birds were chirping in my ears, and everyone I see was smiling. Before I knew, I was living with a man in this house - my hubby-to-be.

Like everything else, every nice thing has to end. The house of love ended when my fren returned from the States. Those 12 months were the most memorable.


(13) CCKC

We re-located to CCKC. This time with rent. It was a brand new place with new appliances and furnitures. My fren, who is the owner, hardly stayed there before he had to leave for States!! It was a comfortable house. If I could complain, it would be the lack of sunlight. My handbags and shoes were coated with a layer of mould!!!

This house gave reality to couplehood. We do finances, we do housework, we entertain, we argue, we quarrel. Everything comes in a package! Things became more mundane.


(14) This home!!

Finally, we used our CPF!!! ROARRRRR!!!!



Its been slightly more than 3 months since we moved into this home, which will inevitably put us in debt for the next 25 years. We took less than 1 week for renovation, only got the basic stuff. Nothing fanciful. Home trend is like fashion trend, it'll pass.

With the last count, after staying in 12 different places, I am sick of decorating liao. As we live in the house, the home will grow. We'll need that additional ugly looking standing fan at the dining table when it gets warm. We'll put up that beautiful little picture of toes on the wall when we became parents. We'll whip up that bland eating porridge when your loved one is sick....

Martha was showing how to make meat balls with something cheesy. She spread the whole cheesy thing on the table and poured the meatball sauce on top of the cheesy thing. That's when the audience came forward to taste, using a fork spooning directly from the table!! Without bowls! That looks so much fun!!

And that's when I thought, when was the last time I had dinner with my mum and bro?

Wouldn't it be nice to have a home where a family eats together?

Simple, isn't it?

I'm cooking for my "Ang" tonight.

Virgin Post

Virgin post.....a bit scared leh.....

I've been thinking of creating a blog for some time.....but gave myself all kinds of reason not to...

(1) No time
(2) English no good
(3) What to write?
(4) No guts

Damn!! No guts, No Glory!!

Bottoms Up!!

And this is how I begin my virgin post....with medication making my vision blurry, my mind fuzzy, my hands shaky......and with explosion of chicken pox all over my body!!!

At my age, I should be popping out babies to contribute to the 6.5 million targetted population but instead, wasting my eggs every month.....and popping out chicken pox!!

I will be under house arrest for a week. Probably 2.

Did a quick Wiki and found out that chicken pox is AKA varicella herpes in medical terms.

Har? Herpes?

I've only heard about genital herpes!! Alas!! Chicken pox is one of 8 types of herpes family. All infectious!

Anyway, I have all sorts of reaction from frens when they realised I got infected with chicken pox.

"What? So old already then have chicken pox? U late bloomer lah"

"Good, have it now rather than if u were pregnant. Got to abort, u know?"

"Har? So what about our spa appointment?"

"Eh....you didn't get a vaccine meh?"

I, for one, is an advocate of natural remedies....which is why I didn't get a VACCINE!!

Anyway, I thought its not a bad idea to get chicken pox afterall,

(1) its not life threatening

(2) I get a free vaccine after being infected

(3) a week of peace from work (hopefully)

(4) spending time at home after spending $$$ in buying in, renovating it and furnishing it!

(5) hard-to-find home-cooked-and-delivered comfort food from Mother-in-law

(6).....heehee....SAYANG from my "Ang"....

Now, my body is coated with calamine lotion (looks like a Xiao Hua Mao) and the medication is REALLY kicking in.......I'm gonna.....gonna ........KOON....Zzzzzz