Put down

I've been wanting to go to the shelter for cats with my flatmate, and today I finally had my chance.

There were so many cats, all so beautiful, elegant and innocent looking. My heart melted and went out to them, and I found myself asking why or how people can leave these beautiful creatures just wandering around the streets.

There was one particular cat, a grey one with a signature tuft of white on her (I checked, it's her...) chest. She was particularly friendly and affectionate.

Later at night I told my friend about her and showed him a picture of her, ad he too fell in love with her. He suggested we adopt her, and talked incidentally about cats getting old and the hard choice we may have to face to put a beloved pet who has been in our lives for so long down when it's ill or too old and suffering...

My heart wrenched when I heard those words. My erratic brain made the connection between a pet being put down and a human being being "put down" at that end stage of life. You don't want to prolong the suffering, you don't want the person to suffer unnecessary pain, and in a way you yourself don't want to have unnecessary pain. He described how it's difficult to see a loved one writhing and suffering pain...

I saw mum lie there in the hospital bed, writhing and struggling and fighting for breath... Oh, god, the tears threatened to erupt again... Mum, how you suffered so and I was unable to help.

And the question came back to haunt me, and made the smile I had earlier quickly vanish. Did I "put my mum down"? Did I kill her by pushing her to enter hospice all that time...? Did I kill her?

Did I kill mum...? Did I by increasing the dosage of her morphine, knowing fully well it might hasten her death...? Was it out of compassion and love and concern of her wellbeing and quality of life, or was it selfish and just not wanting me to suffer any more seeing her suffer and in pain...?

Mum, please you forgive me if I put you down before you were ready...
I held your hand and leaned on you, and I imagined it was what you wanted...

But did I put you down?

Perhaps for as long as I live there will be this guilty conscience I will have to live with...

That day

Here is a better account of what happened that day...

Holding mum's hand

The night before it all was perhaps the most restless I have ever seen mum. She could not sleep. She would close her eyes, and moments later open them again. In her pupils was this strange emotion, a mixture of discomfort, agitation, perhaps even fear. The look of those eyes worried me greatly, and hurt me deeply. I sat by her bedside for several hours, held her hand, stroked her hair, leaned in close to let her feel my presence. I tried what I thought would comfort her, but nothing calmed mum down. I asked her many times what was wrong and whether there was something I could do for her. But she did not answer me. She could not answer me. At the end, the body, and I imagine, the mind is so weak every ounce of strength left is focused on surviving, focused on fending off the inevitable onslaught of death. At the end, the body is dying, dying…

Looking back, a lot is a blur, and what happened seemed like a jumble of images and events and emotions that I cannot one hundred percent recall the chronology of. I realise only now that the memo the doctor gave us earlier the day before had described this stage of life at the end of life.  The last forty-eight to twenty-four hours of life is perhaps the most agonising of all. It is when the body is quickly losing its functions. The person can feel it. The person can feel death approaching. But I did not realise it, for according to the doctor only earlier that day, mum still had “two, three days”. >>> DETAILS MEMO

But we never know for sure when death will come and how. It's in the breath. All in the breath. The breath can tell you whether a person is still alive, still breath-ing. The breath is the first to come at birth, and the last to go.

After a long and restless night, I only managed to go to sleep at around three in the morning. Mum struggled and was agitated in bed for hours before falling asleep around midnight that night, after the nurse gave her an extra dosage of morphine and some sedative to calm her mind. She fell asleep, breathed laboriously, but at least she was asleep.

Come morning, I was woken up by the noise of nurses coming in to exchange shifts and check up on mum. It must have been around seven or so, but I was so tired, so drained from having watched mum fall asleep and sitting in my little side room writing about the day’s events, that I closed my eyes and went back to bed. The carer closed the door to my room, and shut out what was happening for a few hours. When the door was shut, I could no longer hear the harsh raspy sound of mum breathing.
How I was hurt when the carer told me later, when I woke up, that mum was awake at around four. She was again agitated and writhing in bed in great discomfort and pain. The carer asked if I should be waken up, but mum said no. That was the last chance to speak to mum, last chance when mum was coherent, but I was sleeping... Even in her most agonising moment, even when she was in great discomfort and pain, she wanted to let her sleeping child sleep…

Two days before it happened, mum began to breathe more and more laboriously. The breathing was at times loud, and at times more a gasp. The breathing was at times a wheezing sound, at times a soft sigh of breath. I would watch as mum breathed, towards the end, almost entirely through the mouth. As she had trouble breathing and her oxygen levels were constantly falling and at times dangerously low, we placed a tube close to her mouth. Every now and then, whenever mum moved, I would adjust the tube so that it is close to the mouth. Every now and then, whenever I noticed mum’s chapped lips were getting dry, I would apply some lip balm and spray a bit of tea (as the nurse recommended) to moisten her parched mouth. Towards the end, the body no longer needs to drink, and the doctor said it is not necessary to give her any water any more.

That morning, when I finally got up at around nine, I went to sit by mum’s bed immediately, as I have been doing every single morning. And like every single morning, I asked her whether she had eaten, and what she would like to eat. She looked at me, I remember, just looked at me, and then closed her eyes. The carer said mum did not eat, and that she did not feel like eating. I sat by her side and held her hand. I had a feeling. I knew. Though she breathed, and her breathing became noticeably louder, mum never opened her eyes again.

My brother and his family came to visit later in the morning, as did a number of mum’s closest friends. They all had planned to visit that day. Perhaps they too had a feeling, or perhaps as they say here, those with whom you are closest knit to have the fortune bidding a final farewell. “It’s been hard on you,” a friend of mum said, “Your sons are both very talented and well raised, you can go in peace now and follow the Bodhisattva…” Many eyes were moist that morning, and dried only by the sight of my nephew cute little moves and his baby cries and babble. The doctor and an entourage of nurses came in close to mid-day. “Let her rest,” the doctor said, “She is resting, let her rest.” Even at that point, outside the room the doctor had said “two, three days”.

I did not want to leave the hospital to rest a little at home as my brother told me to, for I just had this feeling. And even at home, I did not manage to fall asleep, for brother called to let me know that mum’s condition was worsening. When I returned to the hospital at around six, the evening nurse happened to be there and was checking on mum’s vitals. It took a while, for none of the machines could detect her breathing or heartbeat. Even the nurse, with her fingers, had difficulty measuring mum’s pulse. It was then that she advised my brother to stay the night, something she never did before.

We sat around mum and got out dinner. As part of what had become a ritual, I tuned in to my favourite cartoon, Doraemon, and we watched it together over dinner. Mum’s breathing slowed down. “Do you notice?” brother asked, “Notice how it’s close to ten seconds per breath?” I did. I did but did not say it. Earlier in the afternoon, it was still five seconds between each gasp for air. By this time, each breath took almost twice as long.

I knew. I knew. I don’t know how I knew. Perhaps because of the series of strange dreams I have been having—terrifying dreams that would leave me so drained of energy and with such a headache in the morning. Perhaps because of the images of death and that final moments I “saw” whenever I closed my eyes to rest. Perhaps, if you believe in it, I knew because mum’s heart and mine somehow had this intimate connection to prepare me for what was to come later… But I knew.

I leaned in close, so close our cheeks touched, so close I could feel her breath, her ever laborious breath, each of which could at that moment have been the last. “Mama, please do not be afraid. I am here with here, and I am holding your hand. There is nothing to be afraid of. This body is dying, but it does not matter. Let go of this body, let go of this world…” My voice was calm, a calm that flowed from this strange tranquility which seemed to find its source deep within. There was no fear, there were no tears. There was just this calm, this meditative calm I have rarely felt, and I have only ever felt when I knelt next to dad’s hospital bed four years ago, when very similar words flowed from my lips. On the TV screen were scenes from Switzerland, perhaps mum’s favourite country in the world, a country she has visited perhaps ten times before.

“Mama, thank you for everything you have given me… Thank you for all the care and love you have given me… Thank you for this opportunity to be my mother in this lifetime. Do not worry, I will be alright. I will be fine in the future. I am loved and taken care of…” Twenty-eight years of my life, she has been there, even from afar. Twenty-eight years, day or night, she was within reach and never relinquished her role as mother and mentor. She held me, hugged me, comforted me, consoled me when I was sad and crying. She smiled for me, praised me, congratulated me and told me she was proud of me in my moments of joy and achievements. Mum showed me the meaning of compassion, reminded me to be grateful for everything we have and are fortunate to hold dear to our hearts. Mum showed me what it means to be resilient, to forebear under pain and pressure, to smile in the face of adversity, to boldly struggle on even when you know you will one day be defeated. I held her hand tightly, and felt her hand was getting colder and paler. Her breath was slowing down, slowing down, slowing down… I held her hand even tighter, even tighter, even tighter…

I called my brother to come back into mum’s hospice room, for he went to the corridor to make a call. I knew it was time. The time we for so long all feared and dreaded we could not be together, but we were. I sat on one side, and my brother on the other. I held one hand, my brother held the other. He began to sob, lowered his head close to mum’s arm and sobbed. I reached over mum’s body, felt the heavy, slow heaving of her chest, and held his hand. For a few moments, the three of us, what is left of our family, were connected together. In my touch, I wished to convey to my brother, and also to my mother, I will be and am here no matter what. We are family, and not even mum’s departure will change that. We are family, and we will be stronger and closer together than ever before… Whatever disagreements, arguments, unhappiness and painful memories in the past melted away. Death means that someone is leaving, but it strangely also brings people together.

Mum’s breathing slowed even more. Fifteen seconds between each breath, twenty seconds between each breath. From her gaping mouth and with each drawn out breath emanated this smell, this strong, unpleasant smell. I cannot describe the smell, for it is so very particular and very peculiar. In my mind this was what death smelled like. But the smell did not scare me, and I felt this urge to get even closer to mum.

With my lips, I kissed her cheeks. With my lips, I kissed her forehead. “Thank you, mama… Thank you for everything…” I rested my head on her shoulders and hugged her. In those moments when I was resting in her embrace, I felt this gentle calm and gratitude. “Be happy, mum, be happy and free… Let go, let go of this body, let go…” My eyes were closed, and my lips upturned in a gentle smile. The cancer is soon no more… The pain and suffering is no more…

Following those final few breaths were gargling sounds from the back of the throat. The sound of death which I have heard about, read about. It escaped mum’s half open mouth. It was a painful and traumatic sound. The nurse stood by the side, while the carer cried at the end of the bed.

Each of those final few breaths seemed to be the last. I held my breath and waited several times to see if there would be another one. I turned to the clock, and it was four past eight. I held mum’s hand with both of mine. “Let go, let go… Be happy, be happy…” Those words echoed in my head, echoed in my heart, and I hoped mum heard them. I felt myself smiling gently again. It was not a smile because I was happy, but a smile because it was all so beautiful. Soft meditation music played in the background, on the TV screen colourful photographs bearing memories of the exciting life mum has led appeared and faded away. Brother was there, I was there, and my sister-in-law and mum’s source of joy, true joy and smiles over the past few months—my nephew—were on their way. There could be no more beautiful end to a life full of hard work and sacrifice, a life adorned with travels to far away places and fine cuisine, a life of which touched and moved many people’s hearts. “Let go, mama, just let everything go…”

In life, even at the very end, everything is in the breath. In, out, in, out, in, out… The interval between each in and out breath gets longer and longer toward the end. Until at the very end, it is just in. Out. In.

And out.

Emptiness

I was told before even emptiness is a feeling. It is just the feeling of emptiness. A lack of feeling is also a feeling. It just is.

And I feel it strangely now, coming to the first week after mum passed away. Brother just asked me if I miss mum or think of her. To be honest, not much. I see her everyday in the living room, I prepare food for her (but admittedly, I've not been very diligent, but mostly bought take away, instead of cooking her favourite dishes for her as I should do...). I smile at her, smile when I see pictures of her. Even today, sorting throughout old photo albums and looking for pictures to use at the funeral, I could only smile and laugh at the clothes and hair-dos back then, smile and laugh at the days when I was young, when mum and dad were still mum and dad...

Brother says he thinks of mum when he's alone by himself. When he's not busy taking care of the baby or running around dealing with affairs, he thinks of mum... He wonders where mum is now... Whether mum met up with dad... How mum is doing... He thinks of her. He says he thinks of mum's body lying there in the icebox at the funeral home...

But I do not.

And I feel "guilty" for not feeling, for feeling as if her passing was a non-event. Why that is, I do not know, for she was so dear and so close to me. She was (almost) my everything and what I woke up to every morning for the past few months. When she hurt, I felt frustrated and hoped I could do something, anything to take away her pain... When she was moody, I was sad and agitated, and wondered what I did to make sad and wondered what I could do to cheer her up... When he passed away, I wished her happiness and peace, and other than that did not really feel any sense of loss... But lose someone so dear, so intimate, I certainly did. But I have yet to fully feel the effects of it...

It explains why I've not managed to sit down and write anything about that eventful day. It's been almost a week, and yet I feel this block. I so want to get the words and emotions out, but I can't, I don't know where or how to start. Start from the beginning? Start from the days before when she slowly stopped eating and began to sleep more and more with the morphine drips? Start from when she started to slowdown her rate of breathing...? How do I capture those final moments in words? All I can think of is one word: beautiful. But the details seem to be so vague, seem to be fading with each passing day...

There is this emptiness within. Not that I do not love mum or care about her. Because I know I do, and did, more than anyone else I've come across in my life. And I know she loved/loves me and cared/cares about me more than anyone else ever did (and perhaps ever will...?). Still, there is this emptiness within.

But emptiness is a feeling too.

Call to the monk

I just called the monk in the mountains who knew mum and came to see her just last week. He was saddened by the news of mum's passing.

He asked me how I'm feeling, and I told him honestly, I seem alright. I know the emotions, tears and pain will come, but for now I can only look back to four days ago and remember how beautiful, quick and "smooth" (if death is ever so...) it went. "I was strangely calm, just like when it happened with dad..."

I was, I really was. With dad it was so sudden, but I managed to stay composed and wish him well and happiness. With mum, I thought I would be much harder because there's much more attachment and considerably deeper emotions given how much time I've spent with her and how mug we've gone through together. But again, it was (and I am) rather calm and so far I've been subdued (admittedly, there are moments of sudden longing and sadness, but no real outbursts of emotions. Just yet...).

"It's the ultimate test," the monk said. Test of how much I've engrained the teachings of the Buddha into real life, a test to see how deep I realise the meaning of impermanence and temporariness of everything, of everyone... And so far, I've been strong I believe much thanks to those teachings and to the many day of mediation practice and retreats at monasteries.

"I'm more emotional when I think of how so many people have been so supportive and encouraging over these years..." I said, and I felt tears well up and my voice waver. Truly, I am so grateful and indebted to so many people, friends and family, who helped mum, helped me, make this journey easier and just that little bit less overwhelming.

I am so grateful, and at ease to know after all this, mum is at peace...

One day after...

It was this time yesterday , this time yesterday, when mum breathed her final breaths...

She was gasping, her mouth half open. There were a few gargling sounds coming from her throat. The very symbolic sound of the coming of the end. I hugged her, I held her still, I lay on her chested and felt her last breaths. She was still warm, but I could feel her body was cooling down... I held her, but she was inevitably slipping away from me.

And she was gone...

Finally home

Three in the morning. Finally home. In mum's room, where I'll be spending my first night since my return here seventeen days ago. I'll be sleeping on her bed, on the bedsheets and using the blanket she used prior to entering the hospital three weeks ago. It's bizarre to think she went in and never came out again, at least not physically.

It's been a long seventeen days, and long evening. Almost two hours of chanting followed after we accompanied mum to the morgue. It was long, and brother got stung a lot by mosquitoes. But the chanting according to Taiwanese traditions will make it easier for mum to leave this realm and enter the other world.

Not sad. Strangely stoic, and haven't shed a tear yet. Maybe I'm just too tired now to feel. Too tired because last night was so rough for mum, and I slept only at three, and only for a few hours. Now to think of it, the memo the doctor gave us yesterday did say the last twenty four hours is the greatest struggle. Too tired also because since her passing at eight in the evening, there's been so much to take care of. So much paper work involved in checking out of the hospital, and then following traditions by accompanying mum to the resting place of her body until the actual funeral. It's not even sure when that will take place, within two weeks or so, but it all depends on which day is a "good" day for a funeral. And we've got the priest figuring that out.

I called my "little" uncle, mum's youngest brother, the one sibling mum is closest to. He happens to be in Vancouver. He said he will arrange to come back for the funeral, even though he just arrived there yesterday to be with his family. On Skype, I could see he was so saddened, his face in a deep frown. It even looked like he was close to tears. But his voice was calm, and he told me not to be too sad. I felt very apologetic ruining his holiday and reunion with his family. But he needs to know, for he cared and loved his sister so much...

And I called my ex, who happens to be on holiday with his parents, also in Vancouver. I hesitated a lot before contacting him. I don't know why I was most shaken when I was talking to my ex. Even more so than when mum breathed out her last breath before everything ended. I didn't know how to break the news. I didn't want to ruin his holiday with his parents, but he has a right to know, because he cares so much, and has been ever so supportive. He said before he'd (try to) be there with me at the funeral, but it's a lot to ask, because he's so busy at work. I guess I was shaken because of the uncertainties surrounding us.

Finally home. Surrounded by mum's things. I don't even know if I should be sleeping on her bed, for maybe she'll come back tonight. I did say to her before she passed away if there's anything to come back an visit. I also told her if there's something she wants to tell me, she can come back in a dream. "I won't be afraid..."

Because she's my mother. My mother I love so much, my mother whose hand I held and whose body I hugged as she left this world...

Pick up

23.11

Sitting here in a room, sitting right to mum's body. A chanting machine is playing in the background. mum's body which is covered over with a yellow piece of cloth with scriptures. Waiting for the hearse to come pick her body up and take it to the morgue.

I'm just in a daze. Not sad. Just tired. Not shaken, just strangely calm.

It is all so surreal.

Journey's end

20.05
It was beautiful. A beautiful end to a beautiful journey...

"Dear mama,

It's been hard on you. Please walk slowly to a better place... [xxxx]"

Condition

The machine can no longer detect mum's pulse. Even the nurse has difficulty taking her heart rate. Mum's still breathing, and there's a gasping sound every five, six seconds or so as she exhales. She's in a sleeping state. Even the nurse is unsure where people are at this stage in life. The carer joked mum is choosing her path, trying to decide which is the smoothest course.
"Being human is a lot of suffering," I added, "Go, go smoothly..."

"Stay here tonight," the nurse told my brother, "Watch her breathing, for that's the most accurate. At the end there will be a change in the breathing."

Tonight... Maybe this is the night.

We are all here with you, mum...

Nap

Just as I was lying down to take a little nap, my brother called.

"Mum's oxygen level dropped..."  He told me to stay put and to rest more before heading to the hospital. But how could I?

I lay in mum's bed by myself. The room was empty, just me and myself, surrounded by mum's belongings and scent. My head drifted to images of mum passing away... To all the things that we have to do and take care of. I saw myself crying in her bed. I saw her lying there in her coffin. I could not rest... My mind was ablaze with thoughts. My body for some reason sore and uncomfortable in whatever position I was in...

Time to get up and head to the hospital again...

Restlessness

Brother was crying on the phone. "It is such a difficult topic to bring up..." he said amid tears. I told him calmly I understand. How do you tell someone you want to up the dosage of the morphine, knowing very well that it may hasten the coming of passing? It is not that we want to kill her quicker. We just want to make her feel more comfortable and feel at ease, and go in a calm and peaceful way. I know mum would want the same, for she is suffering, in pain, in agony and trapped in a body that is dying ever so slowly. Must the suffering be unnecessarily prolonged, and for how much longer?

I told my brother I'll speak to mum about it. Mum may be dazed and confused, somehow when I ask her something in Taiwanese she seems to hear me and she does respond.

The doctor came by today and said mum may never leave the hospice ward. I knew this somehow already. I had a feeling. And I saw it in my dreams. The doctor gave us an excerpt from a book loosely translated as "Life's compulsory 10 lessons in life and death". In it, the chapter talks about what a person goes through mentally and physically a few weeks, few days and few hours before death. Within a few weeks, a "spiritual death" occurs, when the person becomes so tired and the body because exhausted. The inability to walk and the inability to go the washroom independently, and in many cases incontinence, will often cause the patient to question the meaning of life.

Within a few days of dying, the patient sleeps more and more, and in those brief waking moments the patient feels a lot of physical pain. Morphine is often used to reduce the pain at this stage, and partly because of the effects of the drug, but also partly because the body is getting ever weaker, the patient has more difficulty expressing herself, and is easily confused and forgetful. There may even be hallucinations, and nonsensical talking. This is where mum is now, I believe.

The doctor said she's going to go from six-hourly injections of morphine to a steady drip into her body. This way mum will feel more comfortable, and will be less susceptible to pain and discomfort, which can wake her up and disturb her sleep. Her body is "changing", as the nurses and doctor like to call it and I figured after so many times of hearing it, the word is just an euphemism for dying. As it "changes", the body rests more and more. Waking up every so often from pain or discomfort is a painful struggle for mum, for she has to expend what very little reserves she has left to fight the pain. A continuous flow of morphine will keep her continuously at ease.

The doctor recommended a dosage of 15ml per twenty-four hours. And an hour or so after the new regime went into effect, I could see mum become very agitated and restless, more so than ever before. Something was bothering her, but nobody could figure out what. Perhaps the dosage is not strong enough. Later the nurse revealed to me that specifically in mum's case, there are increase signs of internal bleeding that are related to progression of mum's cancer. This most likely is causing mum even greater discomfort and pain.

Calmly, I sat down next to mum. "Mama, brother and I discussed and we would like to increase your dosage..." I said to her. I held her hand as I said those words. Held her hand so that she feels the real intentions behind what I'm saying to her, so that she can feel and know that what I am proposing is out of our genuine concern for her wellbeing. "it's not that we want to make you go quicker, but we want you to be more comfortable. You've struggled long enough..."

Mum looked at me in the eyes. From the look I could tell she understood. From the look she agreed. Her nod and a very weak "Ok" confirmed it. Her agreement lifted a heavy burden off of my shoulders. I am her son, her own blood, and never did I imagine there would be a moment when faced with having to decide, or at least influence, my own mother's final moments...

I held her hand even tighter. "Let go, mama. Let go of this body, and let things take it's natural course..." These words were so similar to what I said to dad the moments before he left this world. The memory of that scene, four years ago, at this very hospital, merely a few storeys below where mum and I are now, made sadness swell up deep down. "This body is not ours... Relax. Let go of anything in your mind, let go of this body. Let go..."

Whatever happens in the next days or so, I will be by her side. And I will take her by the hand.

Confusion

Mum had such a confused and frustrated look on her face. She kept on calling my name: "Weiwei... Weiwei..." The way she called me broke my heart.

"What's wrong, mama?" what's wrong? Are you afraid? Don't be afraid. I'm here by your side..." I stroked her head, played with her hair. I grabbed her hand and held her hand tightly. "I'm by your side. Let go. There's nothing to hang onto. This body is not ours, what matters is the heart. Think beautiful things, beautiful memories. You've struggled long enough. Soon it'll be over, mama. Let go..."

I smiled at her, but inside I was tearing, and tearing apart. These words... These words... I spoke similar words to dad just four years ago, and now again, I am saying them to my dear mother. She can hear me, I know she can hear me, feel me, feel my touch, feel my love. I know she can. I know she can...

"Weiwei..." she cried out again, agitated and obviously in great discomfort. She didn't say anything else, just my name. Did she have it in her to say more? Did she have words or thoughts she wanted to empty? In the background mum's favourite cd was playing. Nana Mouskouri, perhaps mum's all time favourite singer. I found the cd while I was home briefly today. Perhaps there is a reason why after so many years, I happen to stumble on the long lost cd in the cupboard. Everything happens for a reason...

I held her hand even tighter, and kissed her fingers. "Don't be afraid, just let go..."

Mum's stomach gargled loudly, and on her face was an expression of pain and agony. "Let go, mama, just let it out..."

Decision

Mum's eyes were open wide and behind her eyes I could see feelings of discomfort. It has been six hours since the last morphine injection (into mum's IV port). "What's wrong? Are you in pain? Are you feeling bloated? Is something bothering you?" I kept on asking mum, but there was no response.
Mum lifted up her arm, took a long look at it in the air. I saw her arm was trembling slightly. Then she proceeded to lower her arm and  her hand reached for her lower abdomen. She scratched that area for a while. "Is there something wrong there? Are you feeling discomfort there?" I asked. Weakly, she nodded.

I went to the nurse and asked for another morphine injection. The evening nurse began to explain that with mum's condition her body needs to rest, and the discomfort and pain she may be feeling as soon as the effects of the morphine wears off is disturbing her sleeping pattern. "She is so weak now, on her last reserves. Her body needs good, deep sleep. Every few hours when the morphine wears off, she wakes up and has to fight against the pain. It takes a lot of energy and strength." Earlier today, brother was alarmed by how much mum has been sleeping ever since the regular morphine injection began last night. The doctor then suggested to go back to a "need" basis, whereby morphine would only be administered when mum feels pain.

The evening nurse is a lady in her fifties, with greying hair and a kind motherly face. She explained to me, from her experience, it is more important that the patient gets good rest, and having to wake up to pain, or wake up because of pain, is very difficult on the body. "The morphine will make her sleep better. It may be that she is sleeping so much because her body has reached that stage. But the morphine will ease the pain, and also help the patient to breathe easier as well less the patient's anxiety." Sometimes, if the body has rested enough, the patient may wake up feeling refreshed and can be very clear minded.





"From your experience, do you think mum has reached that end stage?"

"It is very possible. But sometimes you have to let go. And it may not necessarily be a bad thing that she is sleeping a lot. The morphine will keep the pain controlled so that your mother is comfortable. Sometimes we have to think of what the patient would like, and not about what the family wants..."

I understood what she was saying. Though I am wary that the regular morphine injections will make mum more and more drowsy and less and less coherent, the bottom line is I do not wish mum to be in pain or have unnecessary suffering. I told my brother if he has anything he wants to say to her, do it soon, otherwise there may be a point when mum cannot respond any more. Now, she barely answers when you ask her a question. The nurse said it's because she's using every ounce of energy left in her body to deal with the pain and discomfort she is feeling that she does not have the energy to respond.

"But she can hear you. She can still hear what you say, so you can talk to her. And her mind is still very clear and conscious. There are a lot of things we do not know yet, but the brain is still functioning and inside her mind she is dealing with a lot of issues and emotions, even though she is silent and does not respond when you talk to her," the nurse said.

I discussed with the nurse for a good while about whether to go back to regular injections of morphine. My feeling is yes, but it is too big a decision to make on my own. I know mum would like to be as pain free as possible; she told me that before many times. "I still need to discuss with my brother..."  I said.

I called him. He picked up and was very anxious, for he thought something was wrong. He has been very edgy (and moody) these days because of mum's continual decline. It is really affecting him a  lot, I can see that, and he does not seem to know how to deal with his emotions, so he gets frustrated and angry easily. Plus, he has a kid to take care of, and doesn't really sleep well because the baby wakes up during the night.

I explained to him mum's pain and what the nurse recommended, and he agreed to the regular morphine injection. He wanted to come back to the hospital, and asked if I wanted to return home to sleep, for I have not spent a single night at home since my return two weeks ago. "It's alright, I'll stay here," I said. I feel safer and more certain this way. And without passing judgment on my brother, I think mum also feels more comforted having me around, because I am more caring and attentive, and I touch mum a lot to reassure her. "I will call if there is anything..."

Mum is sleeping again. Sleeping and not feeling much discomfort anymore. Just as the way it should be...

Wednesday 27 June 2012

Woke up to the voice of the nurse: "Are you feeling shortness of breath, auntie? Count to ten slowly and breathe normally..."

Mum had her mouth open. She was gasping for air. Her mouth has been open more or less since last night
when they began administering morphine at regular intervals. The night nurse even asked me whether she should give her the dose at midnight, which I agreed to so that mum would sleep right through the night. Mum was not awake to make that decision. I made it for her, hoping it is the best decision for her.

This morning, mum was in a calm state. She looks restful, and dozes off very quickly. When the carer fed her, she did not throw up. She did not urinate for over ten hours. When I asked her whether she's in pain, she shook her head. She can hear us, but she can not seem to muster any energy to speak.

"It's soon..." the carer said to me, "One of these days..." The carer has been with a number of cancer patients, her own father included, and she told me last night mum is the most peaceful patient she's ever had. The nurse said an open jaw means mum's very relaxed, very relaxed. The nurse reassured me that things are going to be alright. Mum's lips are dry and chapped from breathing through her mouth too much.

I sat by mum's side most of the morning. We didn't speak much, we haven really spoken in a few days now. Now, when I ask something, mum responds with a nod or a shake of get head. Sometimes she would scrunch up her face in disagreement or to express that she really doesn't want something.

I looked at the calendar. It's Wednesday 27 June. Could this be the day...?

Brother's touch

Brother sat by my side. We were sitting by mum's bedside, watching her sleep, watching her slip in and out of sleep and that half-conscious state of mind. Mum breathed heavily, and her mouth was half open. Her lips, in the span of only a couple of days, have become so dry that I have to regularly apply lip balm on them to keep them from chapping even more.

Mum opened her eyes slightly. I smiled at her gently, and wanted to reach out to touch her arm. Unexpectedly, brother called out: "Mama..." It was a sad and desperate call. A call out of hurt, out of deep concern and anguish. I turned to look him. His eyes were red, and a little moist. I saw him reach out his hand and touch mum's. I withdrew my hand, to give him a chance to express himself.

 My brother rarely touches mum, even though at times I urge him to. The other day, I joked with him: "How come you can touch your baby, touch your wife, but are embarrassed to touch mum?" But today, at that moment when he reached out his hand to touch mum's hand, it was such a touching sight. It was not even a grasp, but it was a start. Mum and son touching one another. Could there be a more beautiful connection?

The process of dying

How long will it last, the process of dying? Nobody really knows for sure. It could be days, weeks, or even months. I am ashamed to admit it, but why is it that at times I want it to happen sooner...? Why is it that my mind is afflicted by all these terrifying dreams and images when I close my eyes to rest?

Mum had diarrhea today, five times no less, which is very strange as she has not been eating much. In fact, she has been eating less and less every day. I may prepare something for her for lunch, and when I head home for a few hours to nap and return to the hospice in the evening,  the same food is still there. It's happened for several days already, even today.

Though tonight I happily brought a feast to the hospice, partly because mum's youngest brother came to visit (second time this week...), mum threw up almost as soon as she took a sip of chicken soup. She did not eat the wontons I left her for lunch, and she barely ate any of the turnip fried rice or boneless chicken she so enjoyed just last week. Her taste is changing, her metabolism is changing. Her body is changing...

I sat with her for an hour or so before bed. Just sat next to her, held her hand in mine, and closed my eyes. I could hear her laboured breathing and the 'hiss' of the oxygen tube. In the room hung the scent of lavender and camomile, a new fragrance that one of the very kind and gentle nurses introduced me to. Mum did not say much, and if she did, it is almost a whisper (almost, so not even a whisper...): "I am so tired...." she manages to say, and I had to lean in close to hear her words.

I do not tell her why she is so tired, but even if I do not say anything, I think she knows it herself. She is the one with the body that is slowing down, she is the one in the body that is soon to stop functioning. So perhaps mum knows better than anyone else. All I can do is sit by her side, hold her hand like i often do, and meditate quietly: "Namo tassa bhagavato arahato sammaasambuddhassa..."
I repeat these words often, silently in my mind, and wish mum peace and happiness, peace and happiness...
  
I end with the text I read to mum just before bed. It is very pertinent to our circumstances and what we are going through, and I could not have put it better myself:

The Great Teacher saw that all sankharas [conditions of the body and mind] are impermanent, and so he taught us to let go of our attachment to them. When we reach the end of our life, we'll have no choice anyway, we won't be able to take anything with us. So wouldn't it be better to put things down before that? They're just a heavy burden to carry around; why not throw off that load now? Why bother to drag them around? Let go, relax, and let your family look after you.

Those who nurse the sick grow in goodness and virtue. One who is sick and giving others that opportunity shouldn't make things difficult for them. If there's a pain or some problem or other, let them know, and keep the mind in a wholesome state. One who is nursing parents should fill his or her mind with warmth and kindness, not get caught in aversion. This is the one time when you can repay the debt you owe them. From your birth through your childhood, as you've grown up, you've been dependent on your parents. That we are here today is because our mothers and fathers have helped us in so many ways. We owe them an incredible debt of gratitude.

So today, all of you children and relatives gathered here together, see how your parents become your children. Before, you were their children; now they become yours. They become older and older until they become children again. Their memories go, their eyes don't see so well and their ears don't hear, sometimes they garble their words. Don't let it upset you. All of you nursing the sick must know how to let go. Don't hold on to things, just let go and let them have their own way. When a young child is disobedient, sometimes the parents let it have its own way just to keep the peace, to make it happy. Now your parents are like that child. Their memories and perceptions are confused. Sometimes they muddle up your names, or you ask them to give you a cup and they bring a plate. It's normal, don't be upset by it.

Let the patient remember the kindness of those who nurse and patiently endure the painful feelings. Exert yourself mentally, don't let the mind become scattered and agitated, and don't make things difficult for those looking after you. Let those who nurse the sick fill their minds with virtue and kindness. Don't be averse to the unattractive side of the job, to cleaning up mucus and phlegm, or urine and excrement. Try your best. Everyone in the family give a hand.

"Thank you..." mum said weakly when I finished reading for the night. I smiled at her, and gripped her hand. She responded and tightly held onto my for a brief moment.

"Alegria
I see a spark of life shining
Alegria
I hear a young minstrel sing
Alegria
Beautiful roaring scream
Of joy and sorrow,
So extreme
There is a love in me raging
Alegria
A joyous,
Magical feeling..."

Further decline

Mum is snoring, a sign she is asleep. She has been sleeping most of the day, more and more like a baby or child who needs, or perhaps not need but just naturally sleeps more sleep than the average. Just before going to bed, I read to her part of an article in the book that the monk in the mountains brought her when he visited two days ago:

As soon as we're born, we're dead. Our birth and death are just one thing. It's like a tree: when there's a root there must be twigs. When there are twigs there must be a root. You can't have one without the other. It's a little funny to see how at a death people are so grief-stricken and distracted, tearful and sad, and at a birth how happy and delighted. It's delusion, nobody has ever looked at this clearly. I think if you really want to cry, then it would be better to do so when someone's born. For actually birth is death, death is birth, the root is the twig, the twig is the root. If you've got to cry, cry at the root, cry at the birth. Look closely: if there was no birth there would be no death. Can you understand this?

She thanked me for reading to her after I finished. She does not say much these days, perhaps because as she says, she is just feeling very tired all the time. She barely can muster the energy to move her body sideways to shift her weight so that she's not lying on one side all the time. But the piece I read her these last three days is very pertinent to her at this very moment.

Mum knows she is dying (well, if you look at life in the broader sense, we are all dying...) We do not say it, the nurses and doctor do not say it, but we all know. Why else would she be in the hospice ward? Why else would she still be here, even though the normal 'two week' period of stay has already passed? It is because her condition is not stable, and is not stabilising. With each passing day, her energy levels are draining away, her resources are being used up. With each passing day is a day closer to that moment...

The doctor came in yesterday, as she does every day, and asked her how she is doing. More and more, mum is gagging. She does not necessarily vomit, for there is very little that can come out  of an almost empty stomach. But more and more she feels nausea and gagging reflexes, sometimes triggered by the slightest of certain smells or discomfort. And less and less, she is eating. Today, she drank only a bit of Ensure, and a few mouthfuls of udon noodles and soup. That was it for the day. That was it.

When the doctor left, she patted mum's arm, and said: "As long as you are comfortable..." "As long as she is comfortable..." I repeated after the doctor.  Brother looked at me, seemingly puzzled by what those words meant. Isn't it obvious what those words mean?

I sit at mum's side a lot these days. Just sit there and watch her sleep, watch her body heave as she gasps for air from the oxygen tube leading to her nostrils anchored around her ears. The shadows around her eyes are getting darker, her right arm and legs are getting more bloated from not moving (strangely her left arm seems fine... even though fine means just skin and bone...). And she gets thirsty a lot, so every now and then I ask her whether she wants water or tea. In the back of my mind, I remember what she said to me before: in the end, she will get very thirsty and dry. And every now and then, I apply lip balm on her dry lips.

There are signs, more and more signs, and more and more my sleep is being disturbed and taken over by images and dreams. Nothing I can remember, but I do wake up feeling more tired than going to sleep... Sometimes, when I watch mum lie there and sleep, I catch myself thinking, asking myself "How much longer...?" I know that is a disturbing thought. But I know mum is in a lot of discomfort, and I can feel she is hurting to be dependent on others to bring her water or to flip her body...

"Where are you off to today?" the nurse asked as she came in to do the early evening check up.

"We haven't decided yet. We just went to Germany this morning. We'll have to see how mum's energy levels are!" I answered. In the end, when mum struggled to take in those meagre mouthfuls of noodles, we journeyed to mum's favourite country, place she has visited at least ten times: Switzerland...

Yes, mum may be dying, her body may be giving up, but that does not and should not keep us from continuing to live, continuing to smile and joke and "travel"-- even if it is on a TV screen. The body may be slowing down, mum's mind may be showing signs of confusion and disoriented with the time, but that does not prevent us trying to make her comfortable, as comfortable as comfortable. We may not be able to beat death, we may not be able to beat the pain and discomforts mum feels, but the strokes of her arm, her head, and the many moments when I am holding her hand mum can feel too.

And when  I hold her hand and when I feel her weakly tighten her grip, I know she feels cared for and loved. I know she is not afraid...

The Monk's visit

"Your mum looks calm and peaceful," the monk said, "She is well taken care of and loved. You can see that..." We walked slowly out of the hospital. An hour earlier, I picked up the monk and his attendant from the train station and we headed to the hospital. Mum was so surprised to see us, especially to see the monk. I think she feels embarrassed, as they had journeyed far and long to be in the same room as her. The monk said not to think anything of it, "It should be," (應該的) as they say in Mandarin. But I know he does not leave the monastery grounds much, if at all. I know this journey and seeing mum in her current state would bring back memories of his own loss. Even so, he came, and brought mum great joy. I am sure of it.

We sat around for half an hour or so. Sometimes I had to "translated", as mum spoke so quietly the monk could barely understand her. "I have two very filial children..." she said. The monk nodded in agreement.

"This body, there is no more treatment. I am fortunate that [my brother] found this place for me and that they would take me..." mum said, panting. She has been complaining more and more of shortness of breath and a racing heartbeat. I knelt by her side the whole time, stroked her arm softly, and touched her head and hair. It's what I do when I'm by her side.

The monk commented on the pictures on the wall and the slideshow of photographs on the flatscreen. "It's so personal and touching to see..." I smiled, unsure still why I smile so much these days. It's not a smile because I'm happy. It's not a smile because I'm feeling awkward of saddened. It's a smile because I know: "I'm trying to the best I can". There is nothing more I can do. Nothing less I can do. And I am so glad I am here, making the last stage of mum's journey as comfortable and easy as possible.

I knelt by her side. There were moments when we just sat around. Even silence and the presence of loved ones and people who care about you can be healing, soothing. The silence was broken by mum's laboured attempts to speak. "I have read about this in the [Buddhist] books. This is something we all need to go through. Like Goenka said it's," she gestured her hand, showing the back and front side of her hand, meaning to say life and death is but the flip side of the other.

The monk took out a book they published, the earliest book of Ajahn Chah's teachings they translated. "Our real home" is the title, a collection of dhamma talks about how wherever you go, wherever you may be, finding peace and calm in the heart is the real place of refuge and peace. "The first piece is a good read.." the monk said. I flipped to the first section, and skimmed through it. I read it before. It's a talk given to a layperson on the brink of death. "Read it to your mum when you can," the monk told me. "I will..." I said. I had intended to bring some Buddhist books to the hospital to read, but he brought the first one. Every time you read this kind books, there's a different feeling.

"The gift if dhamma," I said, "It's the most precious gift!" I recounted how fate brought us all together already five, six years ago. How one thing led to another and we got to know the monk. For so many years, the monastery in the mountains has been a place of refuge and place where mum and I can find a temporary place of refuge and solitude. It has given mum many moments of joy and reprieve from the pains of treatment and hospital visits. When I think of all those moments mum sat in the moments and chatted the morning (or afternoon) away with the monk and aunties, I could cry happy tears and tears of gratitude.

"Thank you for visiting..." mum said weakly as the monk was about to leave.

"Good luck, and goodbye..." the monk said. In Taiwanese culture, it is a most wonderful blessing to be visited by a monk at the end of one's life. And mum is so fortunate, so very fortunate to know the monk in the mountains, and to have him go through all this trouble and travel all this way to see her. "It is the merit she made throughout her life," the monk said as we left the hospital.

After a long lunch, and a few hours sitting down and catching up, I took the monk and his attendant back to the train station. At the ticket barrier, I gestured to kneel down on the floor and bow out of reverence and respect. The monk wanted to lift me up, but I insisted.

I am so grateful, so very grateful that he agreed to my request and came to see mum. As he prepared to go down the escalator, he turned to wave goodbye. I stood and waved, and tried to contain my tears. Happy tears, and tears of gratitude...

The phone call

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..."