Wednesday, June 24, 2009

We're still receiving donations

If you've been planning to donate but haven't got around to it yet, there is still time. We'll probably close accounts at the end of June. So just let me know if you'd like to make a donation to these organisations in mom's name :
• Malaysian Red Crescent Society
• Hospis Malaysia
• Society for the Severely Mentally Handicapped
• MAKNA (Majlis Kanser Nasional)
• Community Support Network

Just address your cheque directly to them, or send it to me and leave it to us to divide the amount equally, whichever you please. If you do want to give something, please let me know to expect it. Many thanks.

Friday, June 19, 2009

A Beautiful Saying

“Perhaps they are not the stars, but rather openings in Heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.” (Author Unknown)

Thank you Yenny, for sending this to me.

Janet's blog

Lots of memories of mom are here in my blog.
Just click on the title of this post.
We even have photos of her attending a Terry Fox Run!
(of course, she was in her wheelchair rolling downhill while we were running after her hahaha!)

Wednesday, June 17, 2009

Personal stories

If you come across any personal stories, tributes or postings about mom, please send me a link. In time, we will post the many comforting condolence messages here on this blog.

We came across this nice one by Marina Mahathir, a feisty lady whom mom admired.
http://rantingsbymm.blogspot.com/2009/06/datuk-datin-paduka-ruby-lee-1927-2009.html

You can find Janet's personal blog by clicking on the title of this post.

Monday, June 15, 2009

Funeral details

MONDAY 15TH & TUESDAY 16TH JUNE, 10am - 10pm.
Come pay your last respects at
Nirvana Memorial Centre
No. 1 Jalan 1/116A,
Off Jalan Sungai Besi
57100 Kuala Lumpur



There will be a special service at the wake on Tuesday 16th June at 8pm.

WEDNESDAY 17TH JUNE.
The church service will be conducted at mom's favourite church, the one where she got married. It's next to Dataran Merdeka, there should be ample parking in the basement car park of Dataran.

Date : Wednesday 17th June
Time : 11am
Church : St Mary's Anglican Cathedral
Jalan Raja (Dataran Merdeka)
50050 Kuala Lumpur

NO WREATHS PLEASE. Donations to the following organisations in mom's name would be greatly appreciated. Choose your favourite or let us divide it equally, it's completely up to you.
• Malaysian Red Crescent Society
• Society for the Severely Mentally Handicapped
• Hospis Malaysia
• MAKNA
• Community Support Network

Thank you all for your constant and everflowing love, support and prayers. We are very blessed to you in our lives. Deep, deep thanks from all of us.

Sunday, June 14, 2009

Mom has gracefully taken the hand of God.



It was a day filled with laughter. We had said everything we needed to say to her, and we had heard her 'speak' to us as well. All was forgiven, all love was freely expressed without restraint. That was yesterday.

So today, we just sat in her room, played music and made jokes.

I think that's why she decided that it is ok to leave us. She waited until we were ready. All of us were at home.

When she took her last few breaths, we were all by her side. As her heart gradually stopped beating, she was surrounded by loving kisses and tender touches. She gracefully departed with angels by her side, taking the hand of God.

What a beautiful, graceful passing. She left us with one final beautiful memory. So typical of her. Every gesture is made with deep love and consideration. That's mom.

Another dawn to be grateful for

AM : Mom is still with us, but getting weaker and colder. Still sleeping as peacefully as a baby.
We're topping up her medicines today - we only brought home a 3-day supply from Pantai, and we've run out.

We're thankful to have another day in which to cherish her and care for her. She seems to be most comfy when we are in the room with her and she can hear our voices.

Saturday, June 13, 2009

Another dawn

Mom's done it again. The dr said that when her extremeties start getting cold, her body will be in the final stages of shut down.

At about 11.30pm last night, her toes and fingertips became icy cold, even under the blankets. So dad gathered us around mom and we said our goodbyes. Compared to the previous night, mom looked so much more comfortable and at peace. Her breathing was much easier, her beautiful face was serene and looking content.

We went to sleep at about 2 - 3 am. Mom's breathing was so faint that I couldn't even hear it, although I was next to her holding her hand. It was so peaceful and easy compared to the previous night's strain.

I fell sound asleep, expecting her to slip away too. When we checked on her at 5 something, her extremeties were warm!
We said let's leave her to go in her own sweet time. We went back to sleep and at daybreak, mom was still the same. Another dawn, another few hours to appreciate this remarkable woman who keeps defying the doctors. As Mike put it "She surprised us again."

She's getting herself ready. We've done everything and will continue to be with her. Now it's for her to get herself ready, in her own time and with God's gentle guidance.

Every additional hour is a bonus opportunity to cherish her, love her and pray with her.

Friday, June 12, 2009

Quiet day

It's been a quiet day. Mom looked so comfy that we were envious!

We managed to get some rest this afternoon, in order to be ready for more music and song tonight.

Mom is fading, but she's still very comfy and peaceful. She has some phlegm which we are treating with the medicine given by Hospis. We also have a suction pump on standby in case it gets really bad, but we will try our best not to use that.

We've been giving mom her medicines and changing her position every few hours. Her blood circulation is still pretty good, so she's warm all over. Strong willed indeed. We gave her a manicure and pedicure just now :)

Her haematologist Dr Puru made a special trip to see mom today, and it was such a good thing. I think the dr needed to see that mom was comfy. All the time that mom was in Pantai, Dr. Puru would anxiously call me and the Pantai doctors to keep track of mom's condition. Now she too can have closure.

Please help us to pass the word around. Mom has touched so many people and we can't keep track of them all.

Mom still going strong

At about 3pm yesterday, Pastor Andrew Cheah, a lovely smiley pastor from St Mary's church came and read to mom. She seemed to enjoy it. Then at about 5pm, the Hospis dr came to see mom and alerted us that she is shutting down and it may be a mattter of hours.

We informed the family and close friends and people started arriving. All the people that mom knows and loves came. Bernard brought his keyboard and sang to her all evening. Mom's eyebrows would go up and her hand would respond when she heard her favourite songs : South Of The Border, Hello Dolly, You Are My Sunshine, Oh What A Friend We Have In Jesus and Amazing Grace.

It was a night filled with Love and Rememberance of good times. Just like mom to bring us all together! I can imagine her playing the charming hostess and greeting everyone!

Later, at about 9 or 10pm, the intervals between each breath grew longer and longer. Sometimes, almost one minute would pass without her breathing. So we all gathered around her bedside and spoke to her, bracing ourselves for her to take her leave and telling her it's ok to go.

Well, if you know mom, you would know how long she takes to say goodbye and take her leave. It always happens at every function. She knows so many people. So when dad says it's time to leave, she will start saying her goodbyes and it will take forever. So why should this be any different now?

The family is clear that we have given her permission to go. Wati has also spoken to her on behalf of Ken. So I don't think it is us that is holding her back. I think it is her will. And you know how strong willed she is :)

Throughout her irregular breathing, her heart was strong. Her pulse was strong. At about midnight, Sonny half-jokingly said we'd better to prepare more oxygen for her. He knows her well too.

Anyway, we got ready to spend the night with mom. Wati, Mike, Phyllis, Mellissa, Maxine and David (my cousin) all camped out - on the various sofas, mattresses, chairs and floors. Our cats must have been wondering why so many people scattered all over! This is mom's way of bringing the family together and raising us to a higher degree of intimacy.

At about 2 -3am, we all dozed off. I was holding mom's hand and was stretched out on 3 chairs beside her so I could hear her breathing. It became more regular! Her pulse and her grip remained strong. I had a feeling she wasn't ready to go yet. So we slept.

At about 6.30am, we started waking up, and yes! Mom was still going strong. Her breathing was more regular, her grip and pulse are not as strong now. She is so peaceful. No problem breathing, no struggle of any kind. Bena and the nurse gave her a sponge bath and settled her down.

Meanwhile, I quickly ordered more oxygen! Sonny's prediction came true.

Dad and I are just amazed at her strength and resilience. Or stubborness. She is so strong willed, she will go when she is good and ready and no one can tell her otherwise. We are happy to support her in this, and we abide by her wish. I remain open to 'hear' what else she wants. As long as she is comfortable and peaceful, we can be at peace too.

Thursday, June 11, 2009

Peaceful Night

Mom had a very peaceful night, and so far today has been nice and quiet too. Her breathing is less noisy, her kidneys are slowing down, everything is slowly shutting down, but she is at peace. She's still responsive to our voices and what we say to her.

I told her I'm busy arranging her church service and wake, so she must tell me what she wants. You know how she likes to be in charge of organising every sngle detail right? So I knew she would want to have her say. I told her to tell it to my heart and I will be able to know what she wants.

And then, of course, she sent me a very clear message. Mike and Dad were very happy to hear it, and I'm now trying to arrange it. Will publish the info once we get approval.

If you'd like to come and say goodbye, this is the best time. She's at home, at peace.

Last night, we sang to her, and she gave her half smile and gripped my niece's hand very tightly. Maybe she wanted us to stop!!! Hahaha... She is still aware and this is the best time to express our love and appreciation to her.

Wednesday, June 10, 2009

Mom is home.

Sorry, not able to access blogspot for past 24 hours, and a lot has happened!

This morning, mom's vitals started slowing down and her oxygen absorption dropped a lot. Her condition is deteriorating. I asked the dr if she could possibly hold on until tomorrow (Thursday) to go home, and he said we'd better bring her home today. The faster, the better.

We immediately called LifeLink to supply home nurses and equipment. Mom needs A LOT of things to sustain her in comfort. Morphine in syringe pump, 10 litres of oxygen! and a long list of IV medications.

Finally, to cut a long and incredibly stressful story short - we brought mom home at about 4pm. It took another hour or two to settle her down and run through all her medicines. Meanwhile, hoards of visitors came but respectfully waited outside while we settled mom in. Thank you for your understanding and patience!

It's amazing how much we all accomplished today. While Wati, Bena, cousin David Cheah and I were at the hospital with mom, Dad, Mike and Sonny went and confirmed a beautiful crematorium and memoorial garden to place mom's urn. Apparently, the place was so beautiful and restful that Dad also bought one for himself, and Mike bought the one next to them. So all settled.

Mom's ok. Tired out from the journey home and resting. Thank God we didn't wait. She would be probably be even weaker tomorrow.

Monday, June 8, 2009

Fever

Mom slept most of the day, thanks to morphine. No need to increase the dose yet :)

She developed a fever though, and it wouldn't go down the whole day. Dr added on a new antibiotic - Fortum.

The highlight of the day was when three gentlemen came to say prayers for mom. I remembered that when she had the stroke 7 years ago, there was this one day when Sonny was with her in hospital and two of dad's friends came to visit. They held hands and said prayers for her. Mom doesn't usually like this kind of thing but she said she felt very touched this time, and it was very nice.

Sonny described it as two angels swooping down from nowhere to lift them up with their prayers.

When I recalled this, I asked Sonny and Dad if they could remember who these men were and could they be contacted. Sonny's hair turned white but still couldn't recall the name. Dad remembered that it was a Lion. So he looked up the members list and when he saw the name, he remembered.

He called the man and they arranged for him to see mom today. The whole family also went along. We were all around mom's bed as the prayers were being said. Mom was in her morphine sleep but I know she was aware. Her breathing, bp and pulse were all responding. When it was over, I whispered in her ear and asked if she liked it. She smiled! She SMILED!!! We all saw her lovely beaming smile! Oh Joy!

Then she went back to sleep.

We are still weighing the options of providing palliative care in hospital or at home.

Staying in the hospital will be easier for us. Less worry. If anything happens, there are nurses and the MO. There is also all the equipment of course.

Going home is scary. Since March, we've spent more time in hospital than at home. We go home for 2 or 3 days and she has to be re-admitted. What if we bring her home and then she has a heart attack or chokes on phlegm or has a seizure or fever - what do we do? Even if Hospis can train us to manage that crisis, what if she succumbs? Will our lack of expertise cause or hasten her demise? It is a scary, scary responsibility. Speaking to the Hospis dr was not very reassuring either. We need more info. We need to find home nurses.

My heart tells me that mom will find it easier to have closure and let go when she is at home. I think she is only just realising that her time is up. She's always been so very positive all along. As though dying was just not an option. Now it is a looming reality. I talk to her and sometimes we cry together, and I have this intuitive feeling that she needs to be at home in order for HER to say goodbye. I want to honour this. All of us want what's best for her, even if it makes us worry more. She's our priceless treasure.

So now we are getting more info, finding resources, and then we'll decide.

Sunday, June 7, 2009

Morphine

This morning we increased the dose to 1.5mg and mom spent the day sleeping peacefully :)

When we turned her (we change her position every 2 - 3 hours to alleviate bed sores), she woke up but wasn't in any pain. This is a great relief!

She wakes up off and on. If we're too noisy or we touch her or call her, she'll wake up and she is aware of her surroundings. She doesn't speak but will respond if we ask her a direct yes / no question.

If we ask her 'how are you?' she shoots us a dirty glare. Hahaha, thank God she's pretty expressive so at least we know whether she's happy or not.

There's a difference : she didn't like the physio, but she was ok with the phlegm suction. It shows clearly on her face so we know what to do. Thank God! Phew...

Tomorrow, I'll meet the Hospis dr to discuss palliative care at home vs in hospital. Meanwhile, we'll keep mom on morphine, IV feed and all the present medicines.

Saturday, June 6, 2009

Pain

Endoscope shows duodenum is completely blocked. Something outside is pressing in on the passage and has completely closed it off. This is why the food cannot pass through at all, and comes out through stomach.

They took tissue sample for biopsy - but there's not much point cos this is a sample from inside. It won't tell us what is outside.

There are two possibilities : inflammation from pacreatitis or cancer infiltration. If inflammation, the antibiotic will clear it up. If it doesn't clear up in a few days, it's probably cancer.

When we brought mom back to her room, she started having stomach pain. Bad pain. It comes in spasm like some kind of cramps. At 1pm, we gave Trammadol painkiller. At 2.30 we asked for another one. Dr gave Pethidine. Mom rested better. Although mildly sedated and sleeping, she still jerks and starts gripping her stomach. She's defnitely not comfortable.

At about 5 or 6 pm, the doctors came and I asked them point blank if they thought is was more likely cancer or inflammation. They said inflammation would not cause so much pain. And the pain is increasing even though mom is just resting.

So now, the best thing for mom is to start pain management. She's still getting all the antibiotics and other medicines but the most important thing is to keep her comfortable. The doctors sadly warned us that her condition is declining. She is much weaker now than when she miraculously came off the ventilator.

They started giving mom morphine. Just a small dose of 0.5mg. So she's resting much better now. I spoke to her and she opened her eyes to look at me for a few minutes, then she went back to sleep. She's aware but just not talking.

I'm meeting with the Hospis people on Monday to work out the best plan for mom. I think she'll want to go home. She's had enough. Her eyes and her expression clearly says so.

May God bless her and grant her with comfort and peace. May the rest of her time with us pass with grace and ease, and may every moment be an experience of peace, love and joy.

Endoscope

Mom was transferred back to her room in the ward yesterday. The CT Scan showed that there is a mass of something causing intestines to narrow. That's why the food gets trapped in stomach and spills out through the tube. I don't know why the earlier x-rays didn't show this!

The next step is to find out what this mass is. It could be cancer or it could be inflammation. The doctors will do an endoscope and biopsy today to find out.

Meanwhile, mom is getting fed intravenously. It's quite amazing : a soya bean oil compound is being dripped directly into her veins! This should give her a bit of strength.

She's weak and on painkillers so she is sleeping most of the time. She looks better than when she was in ICU.

The horrible thing is that everytime she comes out of ICU, she sustains some injury. This time, it is a huge sore on her buttocks. It looks like they scrapped off a 4cm patch of skin! Even the ward nurse was shocked. She took a photo on her handphone and lodged a complaint to the ICU supervisor.

Mom will be sedated during the endoscope, and there's some risk so pray for all to go well.

Friday, June 5, 2009

It's serious

Mom cannot tolerate any food at all. It is too painful. This is a sign of gall bladder disease. In a normal healthy person, they would just remove the gall bladder. In mom's case, she may not be able to take the surgery.

Her kidneys and intestines also need investigating. They will do CT Scan to get clear picture of he condition. Then only can decide what is next course of action : to treat or to just put her on pain management.

Mom is stable but unhappy :(

Dr Ridzwan suspected that mom's seizure happened because her 'anti-seizure' medicine Epilim was not being digested through her leaking stomach. Mom has been taking Epilim ever since she had the stroke in 2002, and she has a history of brain sensitivity. Epilim is also a mood stabliser. So no wonder she was emotional and confused on Tuesday!

He immedately changed it to intravenous Epilim. I called in Mom's neurologist Dr Lee Moon Keen. She came very quickly and was happy with Dr. Ridzwan had done.

Meanwhile, we are still anxiously waiting to know what the Gasteroenterologist Dr Mahendra is going to do about her stomach! It can be very hard trying to get a doctor'a attention when you are in hospital!

He finally came to see mom in ICU at about 1pm. After x-rays and ultrasound which took the whole afternoon, at about 8pm, the diagnosis is that mom has some infection somewhere. Don't know where, which organ. Suspect it is the gall bladder. Her kidneys also look blocked or congested - maybe something there too. They will do a CT Scan today. Meanwhile, start her on a new antibiotic Ciprobay.

Mom's pulse and bp were very high when she had the seizure. It came down slightly and was still slowly coming back down to normal when we left her last night.

She's still in some pain, and is being given painkiller twice a day. They don't want to give her too much as tey need her to tell them where she is feeling pain. Too much painkiller will mask the infection.

Dr Ravi, the lung dr came as well. They did a sputum test yesterday and it showed that the two serious bugs from her vomit episode had been cleared. She now has a new bug, but thank God it can be treated with the same antibiotic that Dr Mahendra prescribed. So it'll be a two in one cure :)

Sigh... it is one thing after another. I suppose, we can be grateful that it is not ALL at the same time!

Mom doesn't look happy at all. She looks at us but isn't talking. She just keeps shaking her head in frustration. When we tell her she's going to be ok, she just looks away and shakes her head. When we are there, she grips our hand very hard. We wanted her to be transferred back to her room in the ward last night so that we can be there with her, but Dr. Rajbans wanted to play it safe and keep her in ICU.

Mom really needs emotional support and love now. The ICU has been turning a blind eye to our presence and did not chase us out. I really hope mom is well enough to move back into her room. Then we can freely be with her.

Thursday, June 4, 2009

Mom had a seizure!

What a day! To begin with, Mom had a confused state of mind, she's talking a lot but not making sense. She is sometimes very alert and aware of her surroundings, and sometimes she is not.

Her PEG stomach tube is still leaking. Dr said to stop the feed again. Waited whole morning for the gastroenterologist Dr. Mahendra Raj to come and see her, but he only turned up at 3.40pm. Fortunately, her tube was still leaking and the dr could finally see it for himself. He examined mom's tummy and saw how much pain she was in. I saw his face change and he started to worry. Good! About time!

When he pressed her tummy, there didn't seem to be much pain. Only when he moved the tube itself, then she yells. The skin around the incision is all red and sore.

Dr thinks it could be either a blockage at the entrance to her intestines, or the tube has slipped out of place. He did an x-ray.

The x-ray showed neither. Tube is still where it belongs and there is no blockage.
Earlier this morning, Mom's haematologist Dr. Puru said that her thyroid problem can also cause paralysis of the intestines. This is being rectified with Euthyrox.

So, Dr Mahendra and Dr Rajbans decided to do pump feeding - this is the controlled 30ml per hour drip into her tube. Give anti-reflux medicine, and observe.

At about 8pm, mom started to have pain in her stomach. It got worse and worse until we insisted the nurse call Dr to ask for painkiller. Mom was very emotionally upset about the pain - she usually never complains but this time, it must have been really bad. She actually said it was 'unbearable' and she wants to give up.

Painkiller finally arrived at 10.05pm. About 40 minutes later, the pain seemed to subside.

Then she had a seizure. Her blood pressure, pulse and even blood sugar went way up. Nurses came, dr came, and they transferred her to ICU. All this took about 40 minutes. Just as we left her room, she started to come out of it. By the time we reached ICU, mom was awake, aware and able to respond to my questions. Thank God!

Then they gave her diazepam to completely abort the seizure and sedate her. She immediately fell into deep sleep. Sigh... what a relief.

Now we wait for tomorrow to see how she is. Hopefully the doctors will have some theories about what happened. Her confused state of mind and emotional instability must have been early signs. Pity the nurses were too busy changing shifts to come check her blood pressure. Pity she went through so much pain.

We still haven't solved the mystery of her leaking tube. Hope tomorrow will bring some answers.

Poor mom. She had one heck of a rough day today. At least now she is getting her much needed sleep.

Monday, June 1, 2009

New problem :(

Now that mom's lungs are recovering well, she has developed a new problem : she's not able to digest her food and the PEG stomach tube has been continuously leaking. This is even after her feed has been reduced to a tiny baby amount.

We've stopped it completely now. Her 5pm feed was the last, and every hour there has been a lot of overflow. Mom's skin around the tube has become red and very sore. Poor thing. I wonder what's causing this. Is her stomach not functioning anymore? Why? What can be done? If this goes on, how will she get any nourishment?

Worry, worry...