I called my 'small' uncle (mum's youngest brother) in the afternoon, but could not reach him. The reason why I called was because I wanted him to know about mum's condition. And in a way, also to urge him to come see mum.
He just called back. He had seen pictures of us and mum on facebook, one with her and I on the balcony taken last week, and another one from today, of me washing her hair in the special bathroom. "Your mum looks well on the pictures..." he said.
I didn't know how to respond. When my uncle asked how mum is, I said she has been sleeping a lot. "Even after a long night of sleep, she sleeps and is very drowsy. She sleeps and sleeps, and eats very little. The doctor said it's a sign..."
"I understand," my uncle suddenly sounded solemn and sad. How could he not?
"I wanted to call and let you know earlier. I know how close you two are..."
"Yes, 'big' sister has always been so good to me..." he said.
I was almost crying. Perhaps he was too. "And you have been so good to her, to us..." My uncle really has, always willing to step in to lend a hand, whether financially or otherwise. He treated mum on a trip to visit us the children a few years back when mum had very little money. He paid for mum's flight to Canada last year, saying he wanted a part in realising a dream of hers. He paid upfront the costs of the spinal surgery, and was there waiting outside the operating room last December... He has been so good to mum, and visits her almost every single week.
"I will come up either tomorrow or the day after," he said.
"Thank you..."
Showing posts with label mum's condition. Show all posts
Showing posts with label mum's condition. Show all posts
20 June 2012
16 June 2012
Signs
Mum was especially lethargic tonight. It was worrying. She was slow to respond to questions, and had no appetite. She looked very pale and so very tired. I was getting anxious. Perhaps prematurely so, but I did not know what signs to look for. This is all new for me.
The nurse came in to check up on mum, mainly to check if the IV drips are functioning as planned. That is really what they do here at the hospice ward. Check on the vital signs, make sure that the vitals do not deteriorate, and if need be boost the patient's nutrient intake through shots and drips.
Normally, she would joke a bit and try to make mum laugh. Once she came in at the same time that the carer was hugging mum and helping mum to stand. "Doing the waltz, I see!" That got many smiles. But tonight, she was more subdued, and quietly left the room when she finished checking up on mum.
I followed the nurse out of the room. I told her my concerns, and asked her what "signs" to look for. She did not immediately understand what I meant, for I was being vague and skirting around the word dying. Eventually she understood.
"Mostly it's in the breath. The breathing slows, and so does the pulse. Sometimes the limbs will turn purplish, a sign that the circulation is getting slower and poorer. And there will be less expulsion of urine," she said. I listened attentively, and made mental notes of these signs to look for. Mum has not shown any of these, but her breathing is laboured and she often has to rely on a tube to help her get more oxygen. Her toes have turned a little purple, and yesterday the entire underside of her feet were dark in colour. But that could be more related to poor circulation...
"Some patients experience hallucinations and they see things. If it's something not too frightening, go along with the hallucination and try to imagine seeing the same thing. If it's something frightening, then reassure the patient where they are and that you will not leave them..." She was very calm as she described the signs of death. She must have seen and experienced a lot of it working at the hospice ward. She was probably there when the latest patience 'checked-out'.
She changed the topic, and asked me what mum liked to do before. "Travel," I said, and described how those picture she saw on the wall are from the trips we have taken together and of places we have been to together. I briefly told her how the last couple of years have been, and that ever since she got cancer, I have been determined to enrich her life and fill it with beautiful, beautiful memories. Did I succeed? "It has been tough, going in and out of hospital so often. But as soon as she stopped treatment, I would take her somewhere. Life has been exciting and colourful, and I think she treasures those memories". I told the nurse about our reviews of pictures. Yesterday, the same nurse walked in on us watching a video on the Canadian Rockies, and she saw how excited mum was to review the lakes and towns she has been to.
The nurse asked what mum liked to do with friends, and I answered that she liked to go shop and sit in a cafe and just chat the afternoon away on weekends. "You know, you could organise a little get together. She may not be able to go out now, but you can recreate that atmosphere and those feelings of sitting around table chatting with friends and loved ones. It's like reliving the trips you made together, but this time it's recreating the feelings and smell of a cafe. It will make her feel familiarity and ease inside. It will be god to her..."
We stood in the corridor for a while, chatting. She gave me a lot of tips on the final stage of life, and how to face it. We talked about Buddhism, and I found out she too is into meditation and understands the Thai tradition that I am practicising. The nurse tried hard to think with me what things we could still do and arrange with mum. This was the exactly the kind of support I need. The kind that can help me take away much of the pain and hurt and transform it into creative endeavours that will make mum's remaining time in the world worthwhile and meaningful, memorable and so very valuable.
Plans are being hatched, and all the while mum was resting in the room behind us...
The nurse came in to check up on mum, mainly to check if the IV drips are functioning as planned. That is really what they do here at the hospice ward. Check on the vital signs, make sure that the vitals do not deteriorate, and if need be boost the patient's nutrient intake through shots and drips.
Normally, she would joke a bit and try to make mum laugh. Once she came in at the same time that the carer was hugging mum and helping mum to stand. "Doing the waltz, I see!" That got many smiles. But tonight, she was more subdued, and quietly left the room when she finished checking up on mum.
I followed the nurse out of the room. I told her my concerns, and asked her what "signs" to look for. She did not immediately understand what I meant, for I was being vague and skirting around the word dying. Eventually she understood.
"Mostly it's in the breath. The breathing slows, and so does the pulse. Sometimes the limbs will turn purplish, a sign that the circulation is getting slower and poorer. And there will be less expulsion of urine," she said. I listened attentively, and made mental notes of these signs to look for. Mum has not shown any of these, but her breathing is laboured and she often has to rely on a tube to help her get more oxygen. Her toes have turned a little purple, and yesterday the entire underside of her feet were dark in colour. But that could be more related to poor circulation...
"Some patients experience hallucinations and they see things. If it's something not too frightening, go along with the hallucination and try to imagine seeing the same thing. If it's something frightening, then reassure the patient where they are and that you will not leave them..." She was very calm as she described the signs of death. She must have seen and experienced a lot of it working at the hospice ward. She was probably there when the latest patience 'checked-out'.
She changed the topic, and asked me what mum liked to do before. "Travel," I said, and described how those picture she saw on the wall are from the trips we have taken together and of places we have been to together. I briefly told her how the last couple of years have been, and that ever since she got cancer, I have been determined to enrich her life and fill it with beautiful, beautiful memories. Did I succeed? "It has been tough, going in and out of hospital so often. But as soon as she stopped treatment, I would take her somewhere. Life has been exciting and colourful, and I think she treasures those memories". I told the nurse about our reviews of pictures. Yesterday, the same nurse walked in on us watching a video on the Canadian Rockies, and she saw how excited mum was to review the lakes and towns she has been to.
The nurse asked what mum liked to do with friends, and I answered that she liked to go shop and sit in a cafe and just chat the afternoon away on weekends. "You know, you could organise a little get together. She may not be able to go out now, but you can recreate that atmosphere and those feelings of sitting around table chatting with friends and loved ones. It's like reliving the trips you made together, but this time it's recreating the feelings and smell of a cafe. It will make her feel familiarity and ease inside. It will be god to her..."
We stood in the corridor for a while, chatting. She gave me a lot of tips on the final stage of life, and how to face it. We talked about Buddhism, and I found out she too is into meditation and understands the Thai tradition that I am practicising. The nurse tried hard to think with me what things we could still do and arrange with mum. This was the exactly the kind of support I need. The kind that can help me take away much of the pain and hurt and transform it into creative endeavours that will make mum's remaining time in the world worthwhile and meaningful, memorable and so very valuable.
Plans are being hatched, and all the while mum was resting in the room behind us...
13 June 2012
1AM
130612.0155
I was dreaming of flying and airports before the dreams were interrupted by a gagging sound. I turned my head, and saw mum vomit into a plastic bag. I remember this... I remember this all too well.
I rushed to her side. The carer already held the bag next to mum's mouth and was stroking mum's thin throat. Mum gagged and gagged. I held onto her had, which was hidden under her blanket. I looked at her with eyes that tried to comfort her, reassure her and remind her that I am by her side. A thought of choking, a gruesome image of mum chocking to death flashed across my mind...
Mum has become so thin. Her neck looks like that of a vulture, and is veiny and her bones are exposed under the thin flesh. I stroked mum's thin arm and held onto her hand. "It's ok... I'm here now. I'm here at your side no matter what..." I silently said.
A few more gagging sounds, and the discomfort mum was in seemed to have subsided. "Why is it like this...?" she asked, sounding puzzled and confused. I stroked her arm. I was reminded of what the doctor said hours earlier when he came in and when I asked him to update me on the latest. "The cancer is progressing. The duodenum and bile duct areas seem to have become blocked. That's why she has trouble eating now, and that's why she's throwing up more and more..."
"Go back to bed..." she said, "Go back to bed..." She looked at me with begging eyes. I know it pains her to vomit, not just because of the discomfort it causes her, but also because she feels "guilty" that it upsets me to see her sick and gag.
I stroked her arm a bit more, and patted her forehead and her hair. Her face has changed since I last saw her. She is thinner, more frail, bonier. I loathe to see her naked body, see how much of her body mass has been eaten away by the cancer to leave behind just bones and skin...
But cancer, you can change the way mum looks, you can rob her dignity and cause her to involuntarily vomit ad gag, you can "punish" her with vomiting and being sick... But I will continue to love her, hold her, stroke her arm and with the softness of my voice reassure her...
I was dreaming of flying and airports before the dreams were interrupted by a gagging sound. I turned my head, and saw mum vomit into a plastic bag. I remember this... I remember this all too well.
I rushed to her side. The carer already held the bag next to mum's mouth and was stroking mum's thin throat. Mum gagged and gagged. I held onto her had, which was hidden under her blanket. I looked at her with eyes that tried to comfort her, reassure her and remind her that I am by her side. A thought of choking, a gruesome image of mum chocking to death flashed across my mind...
Mum has become so thin. Her neck looks like that of a vulture, and is veiny and her bones are exposed under the thin flesh. I stroked mum's thin arm and held onto her hand. "It's ok... I'm here now. I'm here at your side no matter what..." I silently said.
A few more gagging sounds, and the discomfort mum was in seemed to have subsided. "Why is it like this...?" she asked, sounding puzzled and confused. I stroked her arm. I was reminded of what the doctor said hours earlier when he came in and when I asked him to update me on the latest. "The cancer is progressing. The duodenum and bile duct areas seem to have become blocked. That's why she has trouble eating now, and that's why she's throwing up more and more..."
"Go back to bed..." she said, "Go back to bed..." She looked at me with begging eyes. I know it pains her to vomit, not just because of the discomfort it causes her, but also because she feels "guilty" that it upsets me to see her sick and gag.
I stroked her arm a bit more, and patted her forehead and her hair. Her face has changed since I last saw her. She is thinner, more frail, bonier. I loathe to see her naked body, see how much of her body mass has been eaten away by the cancer to leave behind just bones and skin...
But cancer, you can change the way mum looks, you can rob her dignity and cause her to involuntarily vomit ad gag, you can "punish" her with vomiting and being sick... But I will continue to love her, hold her, stroke her arm and with the softness of my voice reassure her...
11 June 2012
HND-TSA
110612.1111
On board Eva Air plane which will take me straight to downtown Taipei. To my surprise, it is another Hello Kitty jet. Life is full of unexpected surprises...
A quick turnaround in tokyo, and now on the final leg of my journey home. This is such a difficult journey. My heart is racing and my mind is so agitated. The contrast of my feelings and the cuteness of the plane interior is extreme. I just got a reply from my friend, the one who has gone before down this difficult, difficult road of losing one's mother. She wrote: "... do not question the events, just live them. What has to come, will come."
What is coming? I think I know. I have been told to expect the worst. Brother said mum's condition has further deteriorated. She has difficulty eating, and half a bowl is already a lot for her. "Don't force her to eat, because she'll get very upset. Just listen to what she wants and accord her her wishes. Don't argue with her..." brother told me.
"And don't cry. It'll hurt her if you cry. If you need to cry, go outside. Don't be surprised by what you see..."
What will I see? How has mum changed since i was with her last? How will she has deteriorated that will make my heart break and me break down? I do not know. I do not know what to expect. But it will be a test... Test of my endurance, test of my faith and courage, and test of whether the teachings of impermanence and letting go is truly ingrained in me. Did the period of pre-mourning when I was back in Canada help?
I will find out soon enough.
I must remind myself that it is ok to cry (when mum is not around...). And it is ok also not to cry. I must remind myself that the absence of tears does not equate the absence of feelings or emotions. Instead, it may signify the ultimate level of serenity, reached when you know you've done everything you can with what the time and means you have been given. And I believe I have given mum everything I possibly could...
Whatever happens from now, whatever I see and experience just will be...
Whatever will be will be.
On board Eva Air plane which will take me straight to downtown Taipei. To my surprise, it is another Hello Kitty jet. Life is full of unexpected surprises...
A quick turnaround in tokyo, and now on the final leg of my journey home. This is such a difficult journey. My heart is racing and my mind is so agitated. The contrast of my feelings and the cuteness of the plane interior is extreme. I just got a reply from my friend, the one who has gone before down this difficult, difficult road of losing one's mother. She wrote: "... do not question the events, just live them. What has to come, will come."
What is coming? I think I know. I have been told to expect the worst. Brother said mum's condition has further deteriorated. She has difficulty eating, and half a bowl is already a lot for her. "Don't force her to eat, because she'll get very upset. Just listen to what she wants and accord her her wishes. Don't argue with her..." brother told me.
"And don't cry. It'll hurt her if you cry. If you need to cry, go outside. Don't be surprised by what you see..."
What will I see? How has mum changed since i was with her last? How will she has deteriorated that will make my heart break and me break down? I do not know. I do not know what to expect. But it will be a test... Test of my endurance, test of my faith and courage, and test of whether the teachings of impermanence and letting go is truly ingrained in me. Did the period of pre-mourning when I was back in Canada help?
I will find out soon enough.
I must remind myself that it is ok to cry (when mum is not around...). And it is ok also not to cry. I must remind myself that the absence of tears does not equate the absence of feelings or emotions. Instead, it may signify the ultimate level of serenity, reached when you know you've done everything you can with what the time and means you have been given. And I believe I have given mum everything I possibly could...
Whatever happens from now, whatever I see and experience just will be...
Whatever will be will be.
06 June 2012
Circus night
I saw the promotion yesterday and immediately had the urge to go. again, because of mum, as strange as it may sound. She and I went to Cirque du Soleil (Totem) around this time last year. I promised her to do that in Quebec, the home base of the amazing acrobatic troupe. And I lived up to that promise.
I called mum half way through the show and excitedly told her about where I was. "Oh, it's really cultured..." she said. I know she has fond memories of the show. The first time she saw it was with me in Taipei. The second time was with me, right here, right at the same location in Montreal, a year (or so) ago.
The show was spectacular, the performance elegant and performers beautiful. But my mind was filled with thoughts... Me flying, me waiting at te airport, the fear of not making it home on time, me at the hospital, mum sleeping and opening her eyes only briefly every few hours... So many thoughts and distractions...
After the show I saw several missed calls from brother. I called back.
"We're heading into the hospice ward now..." he said "There's a bed available."
My heart sank and felt so heavy. Earlier when I spoke to mum, she said she had troubled breathing and that her heartbeat was very weak. I told her to hang on. I told her that I'll be home Tuesday afternoon. She told me not to rush...
I hung up the phone. My friend was next to me. "It's not easy... You're so strong going through this. I can't imagine what you are feeling now..."
I cannot either.
I called mum half way through the show and excitedly told her about where I was. "Oh, it's really cultured..." she said. I know she has fond memories of the show. The first time she saw it was with me in Taipei. The second time was with me, right here, right at the same location in Montreal, a year (or so) ago.
The show was spectacular, the performance elegant and performers beautiful. But my mind was filled with thoughts... Me flying, me waiting at te airport, the fear of not making it home on time, me at the hospital, mum sleeping and opening her eyes only briefly every few hours... So many thoughts and distractions...
After the show I saw several missed calls from brother. I called back.
"We're heading into the hospice ward now..." he said "There's a bed available."
My heart sank and felt so heavy. Earlier when I spoke to mum, she said she had troubled breathing and that her heartbeat was very weak. I told her to hang on. I told her that I'll be home Tuesday afternoon. She told me not to rush...
I hung up the phone. My friend was next to me. "It's not easy... You're so strong going through this. I can't imagine what you are feeling now..."
I cannot either.
Breakdown
I was talking on the phone with my ex. "I just hope she is not in too much pain..." he said.
"I hope so too... I hope so too..." I uttered.
"I wish I could give you a big hug..." he said. And the tears just broke loose from my eyes. I had t cut short the conversation and just cry and whimper. I could not bear to speak to anyone. I had no words, and was so very tired, so hurting inside.
The whole evening I have been waiting for brother to call back, as he said he would. I called earlier in the evening to see how mum is doing. They were busy, as for the first time the hospice nurse and a doctor came around to check up on her. They are putting her in the queue for a bed at the hospice ward. They want to take her in for some IV drips. At the hospice ward...
I broke down, because I could not bear the thought of mum entering there. As I told my ex, "It is the first time she's going there. Maybe the only time..."
I cried for a while on my own while my cat nudged me and walked around my feet. It is her way of comforting me, I know it, I feel it.
Brother still has not called back, and I tried to call twice already but there was no response.
It will be a long night...
03 June 2012
Unable to eat
I asked this question before: how long can a person last if she were unable to eat?
Brother said he has been trying to see if the hospital can send someone home to administer iv nutrients, because frankly what mum eats during the day is not enough to sustain her bodily needs.
"She told me again she wants to go to the hospital..." Which is something rare, for she detests hospitals. But perhaps she feels that she cannot go on for long without proper nutrition. "But don't worry, don't rush back here. It's not necessary..."
Moments later, mum came on the phone. She "complained" that calling twice a day is calling too often. I tried to joke that it's just breakfast and dinner. I don't call at lunch, because it's far too late for me given the time difference.
"I have so little 'meat' on my arse it hurts to sit long..." she complained. Those words seemed to slide over me, and I did not have a response. I was not sure what I could say that did not sound fake. And truth be told, I was rushing to catch a flight to go see my ex in a last-minute decision I made just a few hours earlier before I fell asleep.
"Nothin tastes the same anymore... I had some grapes and they tasted spicy," mum said. Spicy, as in the taste of chilly. How can something sweet taste like chilly?
"I did have a cup of fruit juice, which your brother made, and I finished it all. But I felt so bloated after that..."
I did not have a proper response to mum's complaints. What could I say? Really, what could I say? So very very little...
Brother said he has been trying to see if the hospital can send someone home to administer iv nutrients, because frankly what mum eats during the day is not enough to sustain her bodily needs.
"She told me again she wants to go to the hospital..." Which is something rare, for she detests hospitals. But perhaps she feels that she cannot go on for long without proper nutrition. "But don't worry, don't rush back here. It's not necessary..."
Moments later, mum came on the phone. She "complained" that calling twice a day is calling too often. I tried to joke that it's just breakfast and dinner. I don't call at lunch, because it's far too late for me given the time difference.
"I have so little 'meat' on my arse it hurts to sit long..." she complained. Those words seemed to slide over me, and I did not have a response. I was not sure what I could say that did not sound fake. And truth be told, I was rushing to catch a flight to go see my ex in a last-minute decision I made just a few hours earlier before I fell asleep.
"Nothin tastes the same anymore... I had some grapes and they tasted spicy," mum said. Spicy, as in the taste of chilly. How can something sweet taste like chilly?
"I did have a cup of fruit juice, which your brother made, and I finished it all. But I felt so bloated after that..."
I did not have a proper response to mum's complaints. What could I say? Really, what could I say? So very very little...
02 June 2012
Hospital visits
8 visits to the CyberKnife surgeon, over 100 visits to the oncologist, mum's main physician, over 60 visits to the neurosurgeon...
Records do not lie. They reveal the unbelievable extent of mum's visits to the hospital in the course of the last six years. Brother went to the two hospitals where mum received her treatments to collect all the documentation necessary to file insurance claims. And the records prove that over the span of six years, mum has undergone such an ordeal. Her will has been so strong, she has been so brave, but the cancer is stronger. Too strong and now she is much weakened and close to defeat...
In and out, in and out, and in recent months more time has been spent in the hospital than outside of it. Appointments, checkups, indices, scans, blood tests, consultations filled with hope of treatment, and consultations filled with dreadful diagnoses and expectations of the worst to come. It has been such a long, long and difficult journey. One that mum embarked mostly on her own.
And it is perhaps coming to an end now that the hospice agreement has been signed. From now on, it is just a matter of treating the symptoms, soothing pain and reducing suffering.
Records do not lie. They reveal the unbelievable extent of mum's visits to the hospital in the course of the last six years. Brother went to the two hospitals where mum received her treatments to collect all the documentation necessary to file insurance claims. And the records prove that over the span of six years, mum has undergone such an ordeal. Her will has been so strong, she has been so brave, but the cancer is stronger. Too strong and now she is much weakened and close to defeat...
In and out, in and out, and in recent months more time has been spent in the hospital than outside of it. Appointments, checkups, indices, scans, blood tests, consultations filled with hope of treatment, and consultations filled with dreadful diagnoses and expectations of the worst to come. It has been such a long, long and difficult journey. One that mum embarked mostly on her own.
And it is perhaps coming to an end now that the hospice agreement has been signed. From now on, it is just a matter of treating the symptoms, soothing pain and reducing suffering.
19 May 2012
In Perrineville
Spoke to mum just now. A brief conversation. I hesitated whether to tell her where I am, for she never did have a liking for my aunt in the US. but I told mum anyways, just to let her know and not have to hide things.
It was a very brief conversation, and I explained how it is that it costs more to fly direct to Montreal than it does to fly to Montreal and then New York (Newark). It didn't not matter, really. It was just making conversation... Making conversation, as she was doing telling me she just went to market in her wheelchair. Anything to make conversation, to distract from it all...
Mum quickly put me through to brother. "Mum's been losing weight..." she's 41 now, down from 43kg a few days ago. It's strange why she's losing weight. Or is it? It's the cancer. It's eating her from the inside. She's being fed by the (new) carer. Too weak to eat by herself...
I did not flinch. I did not cry.
It's as if those words, the description of mum's condition, the talk about mum's eventual arrangements washed over me completely. A friend of mum's came to see her yesterday. She cried seeing mum. I heard what was said. But I did not flinch. I did not cry.
Am I unfeeling? Am I numb? Am I deaf or just suppressing it all? Perhaps all the feelings of pain, pain, deep deep pain is falling into a hole, a hole that is fast filling and will one day burst out...
What am I doing here, in this small town in the middle of nowhere? What am I doing being surrounded by open countryside, stars and such tranquility?
It's all so surreal.
It was a very brief conversation, and I explained how it is that it costs more to fly direct to Montreal than it does to fly to Montreal and then New York (Newark). It didn't not matter, really. It was just making conversation... Making conversation, as she was doing telling me she just went to market in her wheelchair. Anything to make conversation, to distract from it all...
Mum quickly put me through to brother. "Mum's been losing weight..." she's 41 now, down from 43kg a few days ago. It's strange why she's losing weight. Or is it? It's the cancer. It's eating her from the inside. She's being fed by the (new) carer. Too weak to eat by herself...
I did not flinch. I did not cry.
It's as if those words, the description of mum's condition, the talk about mum's eventual arrangements washed over me completely. A friend of mum's came to see her yesterday. She cried seeing mum. I heard what was said. But I did not flinch. I did not cry.
Am I unfeeling? Am I numb? Am I deaf or just suppressing it all? Perhaps all the feelings of pain, pain, deep deep pain is falling into a hole, a hole that is fast filling and will one day burst out...
What am I doing here, in this small town in the middle of nowhere? What am I doing being surrounded by open countryside, stars and such tranquility?
It's all so surreal.
15 May 2012
In Vancouver
Just checked into the hotel downtown. Small room, a bit pricey, but it has a desk I can work on, and I can check out later in the day and head straight to the exam. It serves its purpose, and that's all I need.
It was a restless flight. I managed to doze off upon take off for half an hour or so. Read a bit, but my mind was very agitated and kept on wondering how things are with mum. It really felt like I was flying back home again, and if need be, I will fly back home. I have the keys and all the essentials, even though I just have a carry on with me. But really, what do you need in life? Less is more, and having nothing you have nothing to lose. I did a bit more studying, if it can be called that. But really, my mind kept on drifting home, drifting to mum, and was very disturbed by imaginations of likely scenarios, and how it would be when mum is no longer around.
First thing I did after I walked into the room (after knocking on the door, something mum has instilled in me, just in case there is "someone" there... And by "someone", it's not necessarily someone you can see...), I called home. Brother told me not to worry, and that they came home late last night. Mum refused to stay at the hospital, and brother signed a waiver for her to be discharged. I asked to speak to mum, and she got on the phone. She sounded very weak, but kept on encouraging me, wishing me "Good luck!" She reminded me to also rest well and eat well.
I asked her how she was feeling, and as soon as I asked I realised perhaps I should not have. If she were feeling terrible, would she say it? She would have to lie, and that would make her feel even worse... And now more than ever, mum needs happy news, positive news, good news, not things that would make her feel even worse. She told me she lost some more weight, down to 44kg now. "Why is it that I can't gain weight?" she asked me. I am afraid to say why, and all I said is that she should eat more, eat more meals spread out over the day.
I chatted with her a bit, and she revealed she was breathless yesterday afternoon. Her blood pressure dropped dramatically, and she felt her heart struggling to beat. It had become very hot and humid, and she was too thrift to turn on the air con...
She's back home. She does not know I know about the complications of her pancreas, and the extreme measure of bile and pancreas fluids in her circulation system. It is good like this, for now. It is good to pretend that I do not know much, and that I will just focus on my exam. Because that is what she would want me to do.
It was a restless flight. I managed to doze off upon take off for half an hour or so. Read a bit, but my mind was very agitated and kept on wondering how things are with mum. It really felt like I was flying back home again, and if need be, I will fly back home. I have the keys and all the essentials, even though I just have a carry on with me. But really, what do you need in life? Less is more, and having nothing you have nothing to lose. I did a bit more studying, if it can be called that. But really, my mind kept on drifting home, drifting to mum, and was very disturbed by imaginations of likely scenarios, and how it would be when mum is no longer around.
First thing I did after I walked into the room (after knocking on the door, something mum has instilled in me, just in case there is "someone" there... And by "someone", it's not necessarily someone you can see...), I called home. Brother told me not to worry, and that they came home late last night. Mum refused to stay at the hospital, and brother signed a waiver for her to be discharged. I asked to speak to mum, and she got on the phone. She sounded very weak, but kept on encouraging me, wishing me "Good luck!" She reminded me to also rest well and eat well.
I asked her how she was feeling, and as soon as I asked I realised perhaps I should not have. If she were feeling terrible, would she say it? She would have to lie, and that would make her feel even worse... And now more than ever, mum needs happy news, positive news, good news, not things that would make her feel even worse. She told me she lost some more weight, down to 44kg now. "Why is it that I can't gain weight?" she asked me. I am afraid to say why, and all I said is that she should eat more, eat more meals spread out over the day.
I chatted with her a bit, and she revealed she was breathless yesterday afternoon. Her blood pressure dropped dramatically, and she felt her heart struggling to beat. It had become very hot and humid, and she was too thrift to turn on the air con...
She's back home. She does not know I know about the complications of her pancreas, and the extreme measure of bile and pancreas fluids in her circulation system. It is good like this, for now. It is good to pretend that I do not know much, and that I will just focus on my exam. Because that is what she would want me to do.
14 May 2012
Be prepared
we talked about "arrangements" for a while. Things that come "after".
Mum is terribly frail. The elevated pancreas index level may be related to the cancer having infiltrated the pancreas and causing a slow process of poisoning.
"How does mum feel?"
"She knows. She knows better than me what is happening."
"How do you feel?"
"Just like this... It's just like this."
"The doctor told me something today," brother said, "And I have to tell you. The next time if her intestines become blocked, she has only a month."
Shock.
Fear.
Realisation.
Terrible, terrible stomach pains.
Terrible, terrible agitation and the vision of the world spinning, collapsing.
"I understand," I said calmly. The calm was uncanny, surreal. The calm that was sheltering the turbulence and storm.
I want to rush there. I want to be there, I want to hold mum. I want to tell her I love her so much. I want to take away her fears, take away her pains, even though my own body, my own mind is filling with fears and agitation. But the exam needs to be written still. I have not yet begun revising. I am so torn and frustrated. What should I be feeling? What should I be prioritising?
I am so scared. so very, very scared.
Mum is terribly frail. The elevated pancreas index level may be related to the cancer having infiltrated the pancreas and causing a slow process of poisoning.
"How does mum feel?"
"She knows. She knows better than me what is happening."
"How do you feel?"
"Just like this... It's just like this."
"The doctor told me something today," brother said, "And I have to tell you. The next time if her intestines become blocked, she has only a month."
Shock.
Fear.
Realisation.
Terrible, terrible stomach pains.
Terrible, terrible agitation and the vision of the world spinning, collapsing.
"I understand," I said calmly. The calm was uncanny, surreal. The calm that was sheltering the turbulence and storm.
I want to rush there. I want to be there, I want to hold mum. I want to tell her I love her so much. I want to take away her fears, take away her pains, even though my own body, my own mind is filling with fears and agitation. But the exam needs to be written still. I have not yet begun revising. I am so torn and frustrated. What should I be feeling? What should I be prioritising?
I am so scared. so very, very scared.
Terrible restlessness
So horribly agitated. Had reserved this morning for revision before I board the flight to Vancouver to take the exam. But as soon as I spoke to brother, my mind wandered off. Who has the concentration to read about procedural fairness and judicial review? Who has the mind to think of court cases and exceeding jurisdiction when my mum is in hospital?
The last conversation with brother was brief. The phone cut out a little, but I heard something about an elevated pancreas index. Not sure what that means, but if it's six times the normal level, it cannot be good. It's probably life threatening. It's all related to the blockage in the duodenum, to the tumour that is there. I know it.
I can picture mum lying there in the ER, so thin, so frail, and again having to undergo another series of tests and scans... how depressed and saddened she must feel after spending so long at the hospital to have to return again...
Will decide moment by moment what to do. Am packing my large suitcase and taking the keys for the house in Taiwan just in case. I am so agitated and not sure what to do...
The last conversation with brother was brief. The phone cut out a little, but I heard something about an elevated pancreas index. Not sure what that means, but if it's six times the normal level, it cannot be good. It's probably life threatening. It's all related to the blockage in the duodenum, to the tumour that is there. I know it.
I can picture mum lying there in the ER, so thin, so frail, and again having to undergo another series of tests and scans... how depressed and saddened she must feel after spending so long at the hospital to have to return again...
Will decide moment by moment what to do. Am packing my large suitcase and taking the keys for the house in Taiwan just in case. I am so agitated and not sure what to do...
ER
Something is seriously wrong.
Called brother twice, once just now, once about two hours ago.
Every time he says he'll tell me later.
Can't study. Can't think of anything else. I'm so afraid...
Called brother twice, once just now, once about two hours ago.
Every time he says he'll tell me later.
Can't study. Can't think of anything else. I'm so afraid...
09 May 2012
Back home...
I called home again, and it was a bit worrying that after two calls there was no reply. So I called my brother on Skype, and the call was rejected. My mind began to imagine all the things that may be happening... Emergency rush to the hospital... Accidental fall? Severe bleeding? High fever?
Then brother called back. Relief... The home phone was unplugged for some reason. Things are alright, though for the past two nights, mum has been running a high fever, 39C the night before, 38C last night. It's worrying, especially in her current state of health, and especially after what the doctor said about rushing to ER should she develop a fever. But luckily, with some icing and wipes with cold towels, mum's temperature subsides and comes down to normal. Mum says perhaps it is due to the winter blanket she is still using, when it is already Summer.
It feels strange to talk to mum at a distance and through a video screen now, especially after I have constantly been around her for the past four months. Stranger to see her lying down in her bed everytime I call. But she said she does feel a bit more energetic, at least better than before. Yesterday, brother posted pictures of him wheeling my mum to the park nearby in her new wheelchair. There was a scene in which mum is sitting side by side next to the baby buggy. Brother captioned it a "four wheeled race". I smiled at that, from afar, and wished I had been there to see mum's face as she smiled looking at my nephew in his race-car (pram). "Remember to go out again today!" I told her. She said it hurts when the wheelchair goes over the uneven pavement, especially where she has an open wound with the bile tube connected, but also where she recently had the bypass surgery. Even so, she must go out and walk about more and get more exposure to the sun and fresh air. It will do her good.
So it has been four days since the carer came to our house. My brother was talking to her today about the possibility of having her around for the long term. She proposed to have a set wage and to forgo the agent. It does seem like a good idea, especially as it would spare us, and in particular mum, the trouble of finding, training and getting used to a whole new carer. Wait a bit more and see how things are so you can have a better assessment, I suggested.
Seems like things are going relatively well, or at least stable so far. It does reassure my mind, but in some little way, suspicious and perhaps too thoughtful as I can be, I do wonder whether they are not telling me things so as not to worry me and distract me from my exam next week.
05 May 2012
Night before last night
05052012.0122
Should I be sad? Should I be mourning? Should I face the facts and allow my mood to sink?
Am I lying to myself by being hopeful? Am I fooling the world by not thinking too much about the doctor's words the day mum checked out of hospital?
"It is in the final stages (末期)..." was the only thing the doctor said. He did not know what to say when brother asked for a time. I personally find it somewhat distasteful. As if one could predict when or how or where death, or anything in life, will happen! And what does it matter really? So people could be nicer and do better if someone does not have much longer left? So you could start living more and doing more with your life if you know time is limited?
The doctor was kind to sit down with us for almost half an hour. He drew a picture diagram of mum's inside, and better than before I now can visualise what they did in terms of the surgery and what is causing the jaundice.
I know much of this already, so perhaps that's the reason why I just sat there and let the words wash over me. I felt like I was not in the room, like I was just a bystander, as brother asked the questions and the doctor answered and drew his diagram...
There is a large lump on the duodenum. It is causing food to be trapped in the stomach. They connected a lining of the small intestines to the stomach wall, so that at least some food can leave somewhat naturally down the intestines and be absorbed. The lump is growing larger. It has compressed against the wall of the bile duct, suppressing the flow of bile which normally enters the duodenum. Jaundice is caused when bile, a poisonous substance if not excreted, collects in the body, and it causes the body to turn yellow and causes the liver to slowly lose its functions. Hence mum's continuing tiredness and still yellowish skin tone.
"I discussed with other doctors, and the duodenum is no longer operable." This was contrary to what I was told before, when I was given that glimmer of hope. Hope mixed with anxiety, for back then I was already told it would be a major operation, and I dreaded mum having to face another long stint at the hospital and having to walk on the long road to recovery again... Now, the lump has grown too large, and an operation to remove the duodenum and reconnect the "tubing" in that region ( which involves cutting out a piece of the pancreas, rewiring the biliary tree and readjusting the stomach and intestines even more) is simply too much work and too risky. It's not worth the risk.
"We've done the best we could so your mother can eat. She may still throw up a bit, as some food will still collect in the stomach and not go down the reroute, but at the very least she can eat and drink like before."
As for the bile duct, they installed a tube that is longer and thicker to direct the flow of bile down to the unblocked part of the intestines. For now, it seems to work well, as mum's jaundice level has come down (but still is very high...), but at least the bile is channeled as intended and leaving the body. There is still an open wound and a tube coming out of it, and mum has to have the tube in her for a month or two. The wound has to be cleansed and addressed of every day. Any sign of her skin yellowing more or any sign of fever, she must immediately check into the hospital, for it may be an infection of the wound.
"She can go home and rest and eat. It's important that she eats well and gain back her strength," the doctor reminded us.
Brother is scared, he told me. He's scared of what may happen, and scares of mum's condition worsening. I reassured him in the best way I could. Though, admittedly, I am of course also scared.
"It doesn't matter what will happen in the future, don't think too much about things. They said three years ago mum doesn't have long. Even if something happens tomorrow, or next week, you're doing your best, and you will not be alone. You've got your wife, your kid, and I'll be back too." (momentarily, I must admit, there was a rise in jealousy and sense of longing, for I have none of the important, valuable sources of comfort and support I just mentioned.)
Whatever happens, I am here. I will be here to support you, to support and comfort mum till the very end, I heard myself saying in my head. "You just spend more time with mum, touch her, talk to her, make her feel comfortable and assured. There's nothing more important. There's nothing else we can do but those things."
Brother was silent, but I know he heard me, because I've said the same thing to him several times. And I strongly believe deep down, he also wants to play a role, but he just does not know how or where to start. And I've been also telling mum to give him (and his wife) a chance, not to judge too soon, not to have any preconceptions based on events and unhappiness in the past, but to let them demonstrate what they can do, to let them have their chance at being filial children.
I believe strongly that this is all part of "Operation Eternal Happiness", an effort from all sides to get together and make beautiful memories together to keep, and to keep for life, and to keep even after death. The ways I've seen my brother and sister-in-law bond an interact with mum over the past two days have been very promising. And my nephew's cute little face and multitude of expressions and sweet little bouts of giggles is a wonderful bonus to add to lightening mum's discomforts and adding to her impression that life has been wonderful, and that life continues to be worth all the hardship and pain...
Should I be sad? Should I be mourning? Should I face the facts and allow my mood to sink?
Am I lying to myself by being hopeful? Am I fooling the world by not thinking too much about the doctor's words the day mum checked out of hospital?
"It is in the final stages (末期)..." was the only thing the doctor said. He did not know what to say when brother asked for a time. I personally find it somewhat distasteful. As if one could predict when or how or where death, or anything in life, will happen! And what does it matter really? So people could be nicer and do better if someone does not have much longer left? So you could start living more and doing more with your life if you know time is limited?
The doctor was kind to sit down with us for almost half an hour. He drew a picture diagram of mum's inside, and better than before I now can visualise what they did in terms of the surgery and what is causing the jaundice.
I know much of this already, so perhaps that's the reason why I just sat there and let the words wash over me. I felt like I was not in the room, like I was just a bystander, as brother asked the questions and the doctor answered and drew his diagram...
There is a large lump on the duodenum. It is causing food to be trapped in the stomach. They connected a lining of the small intestines to the stomach wall, so that at least some food can leave somewhat naturally down the intestines and be absorbed. The lump is growing larger. It has compressed against the wall of the bile duct, suppressing the flow of bile which normally enters the duodenum. Jaundice is caused when bile, a poisonous substance if not excreted, collects in the body, and it causes the body to turn yellow and causes the liver to slowly lose its functions. Hence mum's continuing tiredness and still yellowish skin tone.
"I discussed with other doctors, and the duodenum is no longer operable." This was contrary to what I was told before, when I was given that glimmer of hope. Hope mixed with anxiety, for back then I was already told it would be a major operation, and I dreaded mum having to face another long stint at the hospital and having to walk on the long road to recovery again... Now, the lump has grown too large, and an operation to remove the duodenum and reconnect the "tubing" in that region ( which involves cutting out a piece of the pancreas, rewiring the biliary tree and readjusting the stomach and intestines even more) is simply too much work and too risky. It's not worth the risk.
"We've done the best we could so your mother can eat. She may still throw up a bit, as some food will still collect in the stomach and not go down the reroute, but at the very least she can eat and drink like before."
As for the bile duct, they installed a tube that is longer and thicker to direct the flow of bile down to the unblocked part of the intestines. For now, it seems to work well, as mum's jaundice level has come down (but still is very high...), but at least the bile is channeled as intended and leaving the body. There is still an open wound and a tube coming out of it, and mum has to have the tube in her for a month or two. The wound has to be cleansed and addressed of every day. Any sign of her skin yellowing more or any sign of fever, she must immediately check into the hospital, for it may be an infection of the wound.
"She can go home and rest and eat. It's important that she eats well and gain back her strength," the doctor reminded us.
Brother is scared, he told me. He's scared of what may happen, and scares of mum's condition worsening. I reassured him in the best way I could. Though, admittedly, I am of course also scared.
"It doesn't matter what will happen in the future, don't think too much about things. They said three years ago mum doesn't have long. Even if something happens tomorrow, or next week, you're doing your best, and you will not be alone. You've got your wife, your kid, and I'll be back too." (momentarily, I must admit, there was a rise in jealousy and sense of longing, for I have none of the important, valuable sources of comfort and support I just mentioned.)
Whatever happens, I am here. I will be here to support you, to support and comfort mum till the very end, I heard myself saying in my head. "You just spend more time with mum, touch her, talk to her, make her feel comfortable and assured. There's nothing more important. There's nothing else we can do but those things."
Brother was silent, but I know he heard me, because I've said the same thing to him several times. And I strongly believe deep down, he also wants to play a role, but he just does not know how or where to start. And I've been also telling mum to give him (and his wife) a chance, not to judge too soon, not to have any preconceptions based on events and unhappiness in the past, but to let them demonstrate what they can do, to let them have their chance at being filial children.
I believe strongly that this is all part of "Operation Eternal Happiness", an effort from all sides to get together and make beautiful memories together to keep, and to keep for life, and to keep even after death. The ways I've seen my brother and sister-in-law bond an interact with mum over the past two days have been very promising. And my nephew's cute little face and multitude of expressions and sweet little bouts of giggles is a wonderful bonus to add to lightening mum's discomforts and adding to her impression that life has been wonderful, and that life continues to be worth all the hardship and pain...
04 May 2012
Touching moments
I could not help myself even though I turned away and began to cry. The teardrop flowed down my cheek, even though I pretended it did not happen. I know mum saw it, and that she was hurting too. We were both hurting, both dreading the moment when we must say good-bye... Is there anything more painful than seeing your loved one cry and be utterly powerless to stop your own tears?
"You have been too good to me all these months..." she said, "Having a child like you is worth it all..." She shed tears, and it was so very difficult, so very painful to see mum openly cry. She does not cry when she is feeling pain, she does not cry when she feels so much discomfort. And yet I make her cry... I am making her cry!
I handed mum a tissue and wiped my own tears with my sleeve. "I just hope you are comfortable now you are back home again..." I choked on my words and had difficulty getting my voice out. I stuttered and croaked. "I just hope you can eat and regain your health. The doctor said that's the most important thing now. Eat and recover..." The doctor said so much more, but mum does not need to face so much when she has just overcome an almost six week stay at the hospital. Really, the most important thing is for her to eat, to rest, to eat and eat some more so that she can regain some of her lost weight and look healthy again. In the picture I took of her yesterday, one with me posing next to her as she ate perhaps two, three spoonfuls of noodles, you could tell mum lost a lot of weight... You could tell she's ill. She had the look my uncle had at my brother's wedding. A dazed, fatigued and tortured look. A painful look to look upon...
"I'll eat well and I'll get better. You've done too much for me to let it go to waste..." Mum likes the new mattress cover, and she said several times it's so comfortable and that she feels less of her sores. She kept on asking me how much it cost, and I kept on telling her it was deeply discounted. "The store lady was moved by my story, and she gave me great discounts. And she threw in the heart-shaped pillow for free!" What price can you put on comfort and good rest, I asked mum rhetorically.
"I'm sorry I've been moody and shouted at you, I..."
"It doesn't matter. It's all in the past..." I broke her off. Nothing matters. Nothing except mum being comfortable and at ease in her mind. Nothing else really matters. I have no regrets. The pain I feel is not from regret, but from having gone through so much with mum over the span of over four months. The pain comes from having pulled through, and to see her back home again. What will happen now, what will happen in two weeks, two months from now, nobody knows. The moments of frustration, anger, confusion and being so pushed to the limit... It's all gone, and we made it, somehow we made it. It is a joyful pain, but just as painful, just as heart-wrenching.
"It will be so painful to see you go. You've been here so long. You've done so much, and spent so much money..."
Inside my heart was shattering. I cannot imagine how it will be... Already I am crying, and I feel the tears are just beginning. "It'll be hard to go back, but I must. I promise I'll study hard and do well on the exam. And I'll go to my graduation." Alone, at least without any family present as I had hoped for, but I will go nonetheless.
Brother entered the room. "Mama, are you crying?"
Mum wiped her tears with her fingers. "Weiwei is leaving. It'll be so hard..."
"We're here..." brother said.
"But soon you'll leave too..."
With red and moist eyes, brother uttered the words with difficulty: "Sooner or later we will all leave. You will leave too..." My sister-in-law stood next to him and clung onto my nephew close to her chest. With a free hand, she wiped the corner of her eye.
My nephew giggled, and the mood and all attention turned. He wriggled in his mother's arms like a wriggly worm. He chuckled and seemed to find something so terribly amusing. Perhaps he was laughing at us "crybabies", for the real baby was not crying, but the four of us were. I laid down next to mum while my brother and sister-in-law stood at mum's bedside. I felt in that moment like the luckiest person, and was basking in the warmth of our bonds, our togetherness.
It was such a brief and rare moment, but it was a moment I could not have wished more for. Just the five of us, our whole family together, mum smiling at her grandchild, her children and daughter-in-law at her side. Such a beautiful, touching moment. Shame it did not come earlier, and that there are only two more days for us to relive similar moments together. But we had that moment, and it was so beautiful.
One day, we must all say farewell. But today is not that day, this moment is not that moment.
"You have been too good to me all these months..." she said, "Having a child like you is worth it all..." She shed tears, and it was so very difficult, so very painful to see mum openly cry. She does not cry when she is feeling pain, she does not cry when she feels so much discomfort. And yet I make her cry... I am making her cry!
I handed mum a tissue and wiped my own tears with my sleeve. "I just hope you are comfortable now you are back home again..." I choked on my words and had difficulty getting my voice out. I stuttered and croaked. "I just hope you can eat and regain your health. The doctor said that's the most important thing now. Eat and recover..." The doctor said so much more, but mum does not need to face so much when she has just overcome an almost six week stay at the hospital. Really, the most important thing is for her to eat, to rest, to eat and eat some more so that she can regain some of her lost weight and look healthy again. In the picture I took of her yesterday, one with me posing next to her as she ate perhaps two, three spoonfuls of noodles, you could tell mum lost a lot of weight... You could tell she's ill. She had the look my uncle had at my brother's wedding. A dazed, fatigued and tortured look. A painful look to look upon...
"I'll eat well and I'll get better. You've done too much for me to let it go to waste..." Mum likes the new mattress cover, and she said several times it's so comfortable and that she feels less of her sores. She kept on asking me how much it cost, and I kept on telling her it was deeply discounted. "The store lady was moved by my story, and she gave me great discounts. And she threw in the heart-shaped pillow for free!" What price can you put on comfort and good rest, I asked mum rhetorically.
"I'm sorry I've been moody and shouted at you, I..."
"It doesn't matter. It's all in the past..." I broke her off. Nothing matters. Nothing except mum being comfortable and at ease in her mind. Nothing else really matters. I have no regrets. The pain I feel is not from regret, but from having gone through so much with mum over the span of over four months. The pain comes from having pulled through, and to see her back home again. What will happen now, what will happen in two weeks, two months from now, nobody knows. The moments of frustration, anger, confusion and being so pushed to the limit... It's all gone, and we made it, somehow we made it. It is a joyful pain, but just as painful, just as heart-wrenching.
"It will be so painful to see you go. You've been here so long. You've done so much, and spent so much money..."
Inside my heart was shattering. I cannot imagine how it will be... Already I am crying, and I feel the tears are just beginning. "It'll be hard to go back, but I must. I promise I'll study hard and do well on the exam. And I'll go to my graduation." Alone, at least without any family present as I had hoped for, but I will go nonetheless.
Brother entered the room. "Mama, are you crying?"
Mum wiped her tears with her fingers. "Weiwei is leaving. It'll be so hard..."
"We're here..." brother said.
"But soon you'll leave too..."
With red and moist eyes, brother uttered the words with difficulty: "Sooner or later we will all leave. You will leave too..." My sister-in-law stood next to him and clung onto my nephew close to her chest. With a free hand, she wiped the corner of her eye.
My nephew giggled, and the mood and all attention turned. He wriggled in his mother's arms like a wriggly worm. He chuckled and seemed to find something so terribly amusing. Perhaps he was laughing at us "crybabies", for the real baby was not crying, but the four of us were. I laid down next to mum while my brother and sister-in-law stood at mum's bedside. I felt in that moment like the luckiest person, and was basking in the warmth of our bonds, our togetherness.
It was such a brief and rare moment, but it was a moment I could not have wished more for. Just the five of us, our whole family together, mum smiling at her grandchild, her children and daughter-in-law at her side. Such a beautiful, touching moment. Shame it did not come earlier, and that there are only two more days for us to relive similar moments together. But we had that moment, and it was so beautiful.
One day, we must all say farewell. But today is not that day, this moment is not that moment.
Downhill
"The nurse said she's seen many cases like mum's," brother said. I heard what he said, but there was no expression on my face. "And it'll only be downhill for now..."
I heard what he said, there was no expression on my face. But deep down, somewhere hidden from sight, I am hurting again...
29 April 2012
Seven days
I crouched next to mum's chair and we chatted. The carer joked that it's funny, and sweet, to see a grown boy be so "clingy" and stick around his mother like I do. I think nothing of it. I am the way I am toward my mother. Around her, I behave the way I feel is appropriate and comfortable. Even if it's crouching next to her like a little kid, it doesn't feel awkward of strange. For how many more nights, how many more hours will I be able to be so intimate and close to her? How many more moments can I still reach out and touch her hand, feel the warmth of her body?
No regrets. Life is already too short and often too unpredictable to live with any measure of regret. This sadness I feel inside, which grows ever heavier with each passing day closer to my day of departure, it is not regret. It is a pain from having to leave mum's side at a time when her health condition is still fragile. This time is not like other times before, when I would come back and stay with her until the side-effects of her treatments subside. This time there are no side-effects, just a state of gradual decline of her physical health, and a gradual erosion of her spirits... How painful, how difficult it will be to leave her. And I can't imagine how it will be if I have to leave her and say goodbye if she were still at the hospital. It would be so traumatic, so painful, like never before...
Mum stroked my hair and patted my head. "You have been so good to me... I'm sorry to be moody and to shout at you at times..."
"It doesn't matter. None of it matters..." Tears were wallowing in my eyes. Not because it feels great to know I was wronged and that mum apologised, but because I know a lot of what mum has been feeling, a lot of her anger and moodiness is not because she wants to be like this. A lot of her emotions come from the fact that she's been confined to the same room for so long, and she is not free to come and go like I am. She is not free to walk around, to eat whatever she wants. She is not free from pain, from suffering, from the torments of her physical body and the anguish and frustrations she may feel in her mind...
I wish I could do more, much more than just sit by her side and hold her hand, much more than just massage her sore back and sore arms... But there is only so much I can do, and only so little time I have left to do them.
No regrets. Life is already too short and often too unpredictable to live with any measure of regret. This sadness I feel inside, which grows ever heavier with each passing day closer to my day of departure, it is not regret. It is a pain from having to leave mum's side at a time when her health condition is still fragile. This time is not like other times before, when I would come back and stay with her until the side-effects of her treatments subside. This time there are no side-effects, just a state of gradual decline of her physical health, and a gradual erosion of her spirits... How painful, how difficult it will be to leave her. And I can't imagine how it will be if I have to leave her and say goodbye if she were still at the hospital. It would be so traumatic, so painful, like never before...
Mum stroked my hair and patted my head. "You have been so good to me... I'm sorry to be moody and to shout at you at times..."
"It doesn't matter. None of it matters..." Tears were wallowing in my eyes. Not because it feels great to know I was wronged and that mum apologised, but because I know a lot of what mum has been feeling, a lot of her anger and moodiness is not because she wants to be like this. A lot of her emotions come from the fact that she's been confined to the same room for so long, and she is not free to come and go like I am. She is not free to walk around, to eat whatever she wants. She is not free from pain, from suffering, from the torments of her physical body and the anguish and frustrations she may feel in her mind...
I wish I could do more, much more than just sit by her side and hold her hand, much more than just massage her sore back and sore arms... But there is only so much I can do, and only so little time I have left to do them.
27 April 2012
Musings on a rainy night
Just finished my studying for the night, and the time is a little past one in the morning. Rain is dropping and falling outside, splashing against the window with a melancholic echo. It has not stopped raining for two days...
For the last few days, since mum hired a 24hr carer to stay with her at the hospital, I have been visiting mum significantly less than before. Two hours, perhaps two and a half hours at most, in the evenings, when I would go and have dinner with her. The rest of the day, I'm at home, studying, or trying to study, and trying to fight off wandering thoughts and fatigue.
I went to the hospital with brother in the evening. I was so lost as what to bring mum, and I really want to cook her something healthy. But she keeps on insisting that her carer will buy food from outside, and that the carer will know what to eat. Even so, I feel kind of guilty, as if I am "neglecting my duties"-- duties I have been shouldering for the past four months almost...
The other day, I brought mum some fish soup and little fish spawn, which are rich in protein. From that, a congee was made, and I served it warm to her for dinner. She gagged and vomited some stomach fluids upon smelling the fishy smell. My brother sat there and complained that I am feeding her things that make her vomit. I retorted: "Well, you cook for her then!"
There has been simmering tensions for a couple of days. While I'm busy studying, I still have to wonder what to bring mum to eat, what to cook for her, and worried about her wellbeing, whereas my brother watches tv all day, and visits mum for not more hours than I do. And mum has complained to me in private that when he visits, he sits there and plays his little games on his phone or touch-pad. Maybe that is his way of showing how he cares...
The other day, mum expressed her frustrations to me. It has been two weeks since my brother and his family returned home. I can count the days, perhaps even the hours, they have been to the hospital. To be fair, they were struck down by a bad cold last week. But since then, my sister-in-law and my nephew have been away in another part of the country, whereas brother is here, but hasn't really done much. In fact, the first week they were back, I hardly felt any difference, for I still had to stay at the hospital every single night until three days ago. And to think, before they arrived, I was consciously telling myself to "step back" and let them take over! To think, there are moments when I am so tempted to do something for mum, but just wait and wait to see whether my brother will notice that she needs help...
There is a reason behind my outburst at my brother earlier on. There is one thing he does well, and that is to sit there and talk about what should be done, but he does not seem able to raise a finger. I told him on several occasions since his return that after I am gone, it is up to him (and his wife) to care for mum, and to make sure that she eats well. "I don't know how to cook...", he says, "I don't know what to do and how to take care of her..."
"Well, learn!" I tell him, "How do you think I coped over the last couple of months?" Not to mention over the past three, four years everyt ime I was back here. Of course, mum's condition is much worse than before now, much worse than ever before, but still there are basic things he can do to make mum feel cared for, make her feel appreciated, and make her feel like his presence makes a difference. And I asked him rhetorically, "How can you two not manage to do what I managed to do on my own here in the past few months?"
I know I should not judge other people's standards with my own. But really, how difficult is it to go visit mum at the hospital, to talk to her, perhaps have a happy conversation about happy things? Why is it so hard to see when mum is in pain or discomfort and to massage her feet and arms whenever she scrunches up her face or groans? Again, I cannot judge my brother (or sister-in-law) for what they do (or do not do...), for as someone said to me (and without wanting to toot my own horn....), it is hard to live up to what I do for mum. But I just wish there were more interaction between my brother and mum. I just wish brother would take more initiative at doing something, instead of just sitting there, watching TV or playing games on his phone (admittedly, I did that too sometimes when I was at the hospital for long, long hours...).
No wonder mum is getting frustrated. She told me frankly the other day she needs rest and a peaceful environment to recover after she returns home. What she does not need to deal with is tensions or having to deal with bad attitude. And since what happened in Europe when she visited last year, she has been utterly disappointed and disheartened by my brother and his wife. So she already has preconceptions about what their presence here can bring, and she is not really enthusiastic about them staying here for the next two months or so. In fact, I have repeatedly tried to tell her not to have any predjudices against them, for what has gone by in the past is in the past. I have repeatedly tried to put in a good word for them and told mum they genuinely want to spend some quality time with her and do "something" for her, and I told her the importance of giving them a chance to prove themselves, before it is "too late". But mum seems unpersuaded. And my brother's behaviour (and sister-in-law's absence) since their return does nothing to improve mum's impression of them.
Ten more days, and I will be leaving. It is scary, and very sad, to think about that... Ten more days. How long I have been here already! How slow the days and minutes seemed to pass at times, but it is now already four months since my arrival, and I am soon to leave here. What is there still to do for me? What is there still for me do organise, to plan, to put into place before I leave?
I'm not sure how things will be without me here, but it will just have to be. Have I not done enough? Are my brother and sister-in-law not older than me, both by four years, are they not parents already? They should know best how to take care of someone, and how to be attentive to the needs of someone under their care.
I just hope that when I am gone, they will all manage to find a way to coexist, and that my brother and his wife will both find a meaningful role to play in the crucial stage of mum's recovery at home. I just hope that, as I imagined it, as I dreamed and hoped for, that this big effort to bring everyone together will not be ruined or soured by conflicts, tensions and frustrations.
For what a shame, a terrible, terrible regret it would be if perhaps the last long period of time mum has together with my brother and his family were to be marred by arguments and misunderstandings, or worse, them leaving here in a huff...
For the last few days, since mum hired a 24hr carer to stay with her at the hospital, I have been visiting mum significantly less than before. Two hours, perhaps two and a half hours at most, in the evenings, when I would go and have dinner with her. The rest of the day, I'm at home, studying, or trying to study, and trying to fight off wandering thoughts and fatigue.
I went to the hospital with brother in the evening. I was so lost as what to bring mum, and I really want to cook her something healthy. But she keeps on insisting that her carer will buy food from outside, and that the carer will know what to eat. Even so, I feel kind of guilty, as if I am "neglecting my duties"-- duties I have been shouldering for the past four months almost...
The other day, I brought mum some fish soup and little fish spawn, which are rich in protein. From that, a congee was made, and I served it warm to her for dinner. She gagged and vomited some stomach fluids upon smelling the fishy smell. My brother sat there and complained that I am feeding her things that make her vomit. I retorted: "Well, you cook for her then!"
There has been simmering tensions for a couple of days. While I'm busy studying, I still have to wonder what to bring mum to eat, what to cook for her, and worried about her wellbeing, whereas my brother watches tv all day, and visits mum for not more hours than I do. And mum has complained to me in private that when he visits, he sits there and plays his little games on his phone or touch-pad. Maybe that is his way of showing how he cares...
The other day, mum expressed her frustrations to me. It has been two weeks since my brother and his family returned home. I can count the days, perhaps even the hours, they have been to the hospital. To be fair, they were struck down by a bad cold last week. But since then, my sister-in-law and my nephew have been away in another part of the country, whereas brother is here, but hasn't really done much. In fact, the first week they were back, I hardly felt any difference, for I still had to stay at the hospital every single night until three days ago. And to think, before they arrived, I was consciously telling myself to "step back" and let them take over! To think, there are moments when I am so tempted to do something for mum, but just wait and wait to see whether my brother will notice that she needs help...
There is a reason behind my outburst at my brother earlier on. There is one thing he does well, and that is to sit there and talk about what should be done, but he does not seem able to raise a finger. I told him on several occasions since his return that after I am gone, it is up to him (and his wife) to care for mum, and to make sure that she eats well. "I don't know how to cook...", he says, "I don't know what to do and how to take care of her..."
"Well, learn!" I tell him, "How do you think I coped over the last couple of months?" Not to mention over the past three, four years everyt ime I was back here. Of course, mum's condition is much worse than before now, much worse than ever before, but still there are basic things he can do to make mum feel cared for, make her feel appreciated, and make her feel like his presence makes a difference. And I asked him rhetorically, "How can you two not manage to do what I managed to do on my own here in the past few months?"
I know I should not judge other people's standards with my own. But really, how difficult is it to go visit mum at the hospital, to talk to her, perhaps have a happy conversation about happy things? Why is it so hard to see when mum is in pain or discomfort and to massage her feet and arms whenever she scrunches up her face or groans? Again, I cannot judge my brother (or sister-in-law) for what they do (or do not do...), for as someone said to me (and without wanting to toot my own horn....), it is hard to live up to what I do for mum. But I just wish there were more interaction between my brother and mum. I just wish brother would take more initiative at doing something, instead of just sitting there, watching TV or playing games on his phone (admittedly, I did that too sometimes when I was at the hospital for long, long hours...).
No wonder mum is getting frustrated. She told me frankly the other day she needs rest and a peaceful environment to recover after she returns home. What she does not need to deal with is tensions or having to deal with bad attitude. And since what happened in Europe when she visited last year, she has been utterly disappointed and disheartened by my brother and his wife. So she already has preconceptions about what their presence here can bring, and she is not really enthusiastic about them staying here for the next two months or so. In fact, I have repeatedly tried to tell her not to have any predjudices against them, for what has gone by in the past is in the past. I have repeatedly tried to put in a good word for them and told mum they genuinely want to spend some quality time with her and do "something" for her, and I told her the importance of giving them a chance to prove themselves, before it is "too late". But mum seems unpersuaded. And my brother's behaviour (and sister-in-law's absence) since their return does nothing to improve mum's impression of them.
Ten more days, and I will be leaving. It is scary, and very sad, to think about that... Ten more days. How long I have been here already! How slow the days and minutes seemed to pass at times, but it is now already four months since my arrival, and I am soon to leave here. What is there still to do for me? What is there still for me do organise, to plan, to put into place before I leave?
I'm not sure how things will be without me here, but it will just have to be. Have I not done enough? Are my brother and sister-in-law not older than me, both by four years, are they not parents already? They should know best how to take care of someone, and how to be attentive to the needs of someone under their care.
I just hope that when I am gone, they will all manage to find a way to coexist, and that my brother and his wife will both find a meaningful role to play in the crucial stage of mum's recovery at home. I just hope that, as I imagined it, as I dreamed and hoped for, that this big effort to bring everyone together will not be ruined or soured by conflicts, tensions and frustrations.
For what a shame, a terrible, terrible regret it would be if perhaps the last long period of time mum has together with my brother and his family were to be marred by arguments and misunderstandings, or worse, them leaving here in a huff...
24 April 2012
Lightning
The sky is flashing every few seconds. a storm is brewing in the not too far distance. I'm sitting here again, in room 40, Ward 111, while mum falls asleep and lightly
snores. an oppressively hot day, over 33C in the month of April, is about to end. heavy showers are expecte
d through the night.
i'm supposed to be home night, it was so agreed. so i delivered dinner at seven, and brother would take over at close to ten and stay the night. i was planning to go home nd have good night of sleep, for it's been far too long...
Brother came as promised, all prepared to stay, and i explained to him things he needs to be aware of. he came with the will to stay, but his body was unwilling. he is still coughing and sneezing, and though he put on a mask when i told him to, mum was still concerned. And rightly so, for she is terribly, terribly frail now, and still has very little appetite. brother was very apologetic as he left...
so here i am again, the night carer. thinking i'd be homelater i didn't even bring any of my book to study. but i guessyoucould always improvise and still study by reading cases online. it's better than nothing at all...
snores. an oppressively hot day, over 33C in the month of April, is about to end. heavy showers are expecte
d through the night.
i'm supposed to be home night, it was so agreed. so i delivered dinner at seven, and brother would take over at close to ten and stay the night. i was planning to go home nd have good night of sleep, for it's been far too long...
Brother came as promised, all prepared to stay, and i explained to him things he needs to be aware of. he came with the will to stay, but his body was unwilling. he is still coughing and sneezing, and though he put on a mask when i told him to, mum was still concerned. And rightly so, for she is terribly, terribly frail now, and still has very little appetite. brother was very apologetic as he left...
so here i am again, the night carer. thinking i'd be homelater i didn't even bring any of my book to study. but i guessyoucould always improvise and still study by reading cases online. it's better than nothing at all...
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