Return to the hospice

Brother has not gone back to the hospice ward since mum checked out almost three weeks ago. I did return, last week, with my ex, and showed him around a bit. I teared somewhat walking down the same corridors and feeling the memories come back. A nurse I met, the one who was mum's main nurse during her stay, said most do not return ever again, because it is too painful. But return brother and I did, because we wanted to thank the staff for their dedication and wonderful care in mum's final days and moments.

We ordered a  flower arrangement to be delivered at 10 in the morning, and sure enough when we got there, we saw the beautiful pot of orchids sitting on the counter at the nurses' station. The head nurse were surprised (and happy) to see us again, and moments later the nurse who was there and who helped mum in those final moments walked in.

They asked us how we are feeling, and how the "arrangements" have been. Tiring, but everything was well organised, dignified and beautiful, just as mum would have wanted it. We thanked them for their hard work and commitment, and I could see brother was not only a little speechless, but also moved close to tears again reminiscing those days.

The corridor looked the same as before. The same long corridor, with more or less the same decor on the walls. And in the air was soft classical music playing. We did not venture to the entrance of mum's room (Room 20), like I did a few days earlier, but we did walk into the common room, and I put some more donations into a box. Donations that would go to the hospice ward, and help keep it going.

 To our surprise, one of the nurses told us that this department is probably the most "loss making" and underfunded, for there are many more nurses to each patient and a lot of the equipment that are used are much better than the wards on the lower floors. I wanted to already, and I will do it soon, but I intend to write to the director of the hospital commending the staff at the hospice for their exemplary work and efforts, and hopefully motivate the hospital to dedicate more funding and resources to the crucial the end-of-life health care system.

We also met the doctor who was responsible for monitoring mum's day-to-day condition at the hospice. Gratefully, I bowed and thanked him again and again for making mum's final journey a peaceful and relatively easy one. He and the nurse told us that we have been wonderful with our mothers, and that they learned a lot from us and our dedication to mum as well.

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.

Sleepless at TVG

Sleepless till at least two thirty in the morning. My body was just somehow uncomfortable, whatever position I was lying in. My thoughts drifted to and fro, and for a moment I thought a lot of my ex, so I grabbed the phone and texted him.

We had a nice exchange of messages, joking and playing with words like we used to do, something we've not done for a long time, something I do miss.

Even so, still I could not sleep, and lay twisting and turning till I don't know when. My body felt agitated, uncomfortable, my mind was restless. Something was frustrating me, something was bothering my body, and I was sore and aching in my back.

Perhaps this is what mum feels like...?

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...

Bath

As soon as the nurse and volunteer wheeled mum to the bathroom, I quickly took off the old bedsheets and started to change the sheets and make her bed. The volunteer came back in and seemed amazed I was doing this. "You should come volunteer here! You do this so well!"

Moments later, in the bathroom, I began to wash mum's face and shampoo her hair. Again the same volunteer complimented me: "Where did you get a son like this? What did you teach him to be like this? It's so touching to see how attentive he is. It's even better than having a daughter!" The nurse agreed and said things to that effect too.

Mum smiled gently and didn't say anything. I didn't say anything either, and just kept soaping mum's face and giving her a scrub. But deep down inside I felt that comment was somewhat unfair.  And there have been occasions when mum would say: "Before he was born, I wanted a girl and bought everything pink thinking it would be a girl!" To which often these aunties would say: "He's better than a girl! He's like having two girls!"

I've heard it all before, compliments like these, but it always stings when people imply that only girls can be attentive and caring. I am a boy, and (without tooting my own horn) I am by nature caring and attentive. These are natures not reserved for a girl, for these are simply human natures that any person, boy or girl, can possess, just as a person can be mean and ill-minded (I can be too!) When people make comments like those above, they seem to imply girls are the more caring gender, whereas all boys are callous and uncaring and unfeeling. But I am sure there are plenty of other boys who would do what I do, perhaps even more, to make their parents happy and comfortable. Though special, I am certain there are other boys who would help bathe their own mother when they have become ill and infirm.




I kept on washing mum's body, rubbing off the accumulation of dead skin, and massage her head to make her feel at ease and comfortable. "It's just as it should be..."

Nothing more, nothing less.

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...?

Visit of old friends

There are a couple of college friends mum is close to and has kept in touch throughput these years. Four of them shared a dormitory, and another guy made the group complete. Every single year, they would organise a reunion, and I have accompanied mum to a couple of these events.

Of the four girls (mum being one of them), one passed away a few years ago. Breast cancer. Another became estranged from the group because as soon as she hit middle age, she seemed to have a mid-life crisis and became very flamboyant, and started dating other men. So that leaves mum and another close friend (who happens to be from the same hometown as mum, and who was with mum when she visited me in Canada back in 2008) and this guy.

The two came to visit mum at the hospital (with the uncle's wife, that made three people). They saw me in the corridor, as I was temporarily out of the room to get something. The auntie who is closest to mum (the one who came to Canada back in 2008), saw me and gave me  a big hug. "It's so good to see you again! It must be very hard on you..."

We quietly went into mum's room together, and there was already a big gathering, for the baby entourage had arrived (my brother and his whole family), and my cousin was also there too. Mum's friends sat themselves at mum's bedside. Mum looked at them weakly, and tried to smile. But she could not.

"You just rest, and let me do the talking!" said the auntie. She has always this very funny way of talking and expressing herself, and she often makes mum laugh whenever they get together. For the last couple of years, since dad passed away, this auntie would take the train from the southern part of the country just to come see mum and have a meal with her, and then return home again in the evening. That is true friendship, true and lasting. Mum told me that when they were in college, this auntie used to loan mum her dresses so mum could go on dates. Mum could not afford fancy things or afford to eat at fancy places, but this auntie was and has always been very kind and generous.

They sat around and did a lot of talking. The auntie got out pictures and showed mum her latest trip to Barcelona and thereabouts. There was a lot of laughing and talking, but I could see on mum's face that she was very tired. She did not say much, and when she did, it was more in response to questions about her condition.

Was it me, or did mum look sad? All these years, she always loved seeing these old friends and could chat with them for hours and hours, from lunch to afternoon tea to dinner. But now, mum could not really share in the excitement and fun of reunion. Her body is too weak, her mind too clouded by fatigue and traces of morphine... I held mum's hand and tried a couple of times to hint that perhaps mum is tired.

Mum's old friends stayed half an hour or so, and then got up to leave. "You take good care, and rest well..." They left with smiling faces, but I could sense deep down they were sad. So many years of friendship between them, and now perhaps they are visiting mum for the last time.

Once out of the room, the auntie hugged brother and me. "If there is anything, please let us know. We are all here." The auntie told brother something about arrangements afterwards, but I did not quiet catch what.

I bowed slightly as they entered the elevator and thanked them for coming all this way to visit mum. Though mum did not say much, I know she is very happy deep down, and very touched. 

Pain and morphine

"Doctor, the pain in the stomach...?"

"I just felt her abdomen, and it's bloated from the retention of liquids. We haven't done any scans yet, but most likely the cancer has progressed in the intestines, causing the swelling and occasional pain," he explained, "We can give her some morphine. Small doses to start with. It'll make her feel better." I thanked him, and he bowed his head gently before walking away.

I walked back into the room, and mum was languishing in bed. Today, more than ever, she has been very restless and asked to have her body shifted several times due to sores. Mum has become so weak that she cannot even shift her own legs, let alone turn her body so that she's not lying on just one side. These are signs, I fear... (but then again, I am not a trained medical expert...)

As the carer took half a day off, it was just my brother and me taking care of her. For much of the afternoon, mum lay there in bed with a lot of discomfort. At one point the nurse did come with a syringe containing the painkillers (3mg of morphine) which she injected into mum's IV. Mum felt a bit better, and within an hour or so fell asleep.

Mum spent most of the day in a state of waking moments of daze or sleep with her mouth open. At one point, she opened her eyes and saw me sitting by her side. She whispered (maybe not intentionally, but what sound she manages to muster these days is no more than a whisper): "I know it's been hard on you seeing me like this..." Mum's voice is almost inaudible now, and every-time I really have to strain close to her ears to hear her. I reassured her I would have it no other way. "I know, I'm very lucky. Even the monk said so..."

"Isn't this the best you could wish for? So many people who care about you, so many people coming to see you. You're with your children and grandchild. What more would you like? Would you like the president to come see you?" I joked. (It really was a joke, for the current president is an incompetent fool who's policies are jeopardising the survival of my homeland. He is not welcome here. I'd lynch him and shout abuse at him if I had the chance...)

"Would you like to go home?" I asked her. I told her about the dream I had the other day, the dream in which I was by her side at that final moment and when i said "Let's go home..." Mum weakly shook her head. I asked again whether she would like to be at the hospice or be at home "when that moment comes". 

"Here... I don't want to scare any of you..." mum said weakly.

"You won't scare us!" I said. By "scare" she means that she doesn't want to appear in her spirit form and frighten us after she passes, for according to local beliefs the spirit of the deceased will remain in the place of death for some time, often "haunting" the place until  the spirit can find a final resting place. "It is your home, you can go back to if you want to, if you feel most comfortable..." Mum dozed off before she said anything else. I held her hand for a little longer before I let go.

While talking to a nurse, I learned that fluids collecting in the stomach ( the medical term is ascites) may be caused by the thinning of blood vessels which cause whatever fluids in the circulatory system to escape into the body (whereas normally the fluids are contained in the blood). Another possible cause may be due to liver disease, and failure of the liver to process and reabsorb the waste fluids of the body. Both possibilities may explain mum's bloated stomach, for since last week the nurses have been unable to draw any blood from her veins, for they have become too dehydrated. It is also likely that mum is suffering from liver disease, as the bile fluids are unable to completely come out of the body, and the build of bile is not only causing jaundice, but also affecting the normal functioning of the liver...

Does it matter what the real reason is behind mum's latest complication? The reason we are at the hospice is not to treat, but to alleviate pain and suffering. And the first administering of morphine is a step in that direction. A worrying step, because I have seen before what morphine can do to her mind.

For most of the afternoon, I was pensive, a little shaken and saddened.  Mum ate next to nothing today. The bloatedness of her stomach and perhaps the morphine made her have even less of an appetite. The few moments when mum woke up, she is lost and confused, more than ever before.
At one point, just a little after six in the evening, and after sleeping for two hours or so, she woke up and murmured: "Why are you here? Go to sleep! It's still so early..." She thought she had slept all the way through till the morning. An hour later, she woke up, opened my eyes and saw me sitting by her side. She said: "It's so late already! Go to bed. Don't sit there..." Is it the morphine, or is it her malnourished body and brain that is causing her to have difficulty comprehending time and what is happening?

I do not know. But this is the way mum is now, and her condition seems to be deteriorating rapidly.
I sense a new stage of illness and difficulty has come.

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?

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...

Bath at noon time

I read in the paper the other day that bathing at noon time (between 11 in the morning and 1 in the afternoon) on the day of the Dragon Boat Festival is supposed to be healing for the body. Today happens to be the summer solstice, a period of time when the "yang" (positive/male) energy is at it's most potent in any given year.

Traditionally, people would collect rain water and use it to bathe or cook. But according to the International Taoist Association (yes, there is such a thing...) you can also use tap water to cleanse the body, as long as the water is collected between the named hours.

So I asked the nurse if mum could have a bath today. Initially, she said she'll try to fit things in, as the ward is short of people given that it's a public holiday. But a few moments later she came back and said to be ready at 1pm.

"Could we do it at 12.55?" I asked, and explained the tradition I just found out in the paper. The nurse hadn't heard of it before, but she was amused and agreed to come a few minutes earlier.

We went back into the special bathroom, and mum was quiet, but quietly pleased. It's definitely the best bit of her days at the hospice ward. The carer and nurse helped undress her, and I handed them two little towels to cover up the "vital" bits. And then followed another half an hour of touching and relaxing experience.

Brother stood at one end and tested the water temperature and rubbed mum's feet, while I massaged mum's head with shampoo as the carer and nurse washed the rest of her body. Mum closed her eyes, and had another look of utter enjoyment and bliss on her face.

"I've never seen two boys want to help their mother bathe. It's so touching..." the nurse said. I smiled, and got out my iPhone and asked her to take pictures of us. Later in the evening, I inadvertently saw on the nurse's mobile workstation that the day nurse had left a report on mum's condition for the night nurse. On the report was the following sentence:

"Special event: First son and second son bathed with patient, took pictures to remember the happy experience."

After a long bath, head scrub and "deep facial cleansing", mum was wheeled back to her room. We massaged her with lotion, blow-dried her hair, and I applied moisturiser on her face. Again, the nurse commented that she's never seen two children who are as attentive as we are. That made my brother and me smile.

Mum's skin felt clean and smooth again, and her eye lids were heavy. After a long bath, who would not want a nice nap?

"Sleep, mama, sleep..." I said and stroke her arm gently while I patted her head, "Sleep well..."

Celebrations

There was a beautiful, joyous mood in the air. The nurses, volunteers and doctors gathered and clapped their hands as they sang "Happy Birthday" to all those who had gathered at the lounge. There were two elderly people in their beds, and a couple of other patients in wheelchairs, and a dozen relatives and friends there. The Happy Birthday song is often sung to the elderly and infirm. We believe everyday can be your birthday, every day can be a special and happy day, and not just your real birth-day.

There was plenty of fresh fruits-- sweet and sour mangoes, kiwis, grapes and apples, as well as bundles of steamed rice dumplings wrapped with lotus leaves. A volunteer played harmonica tunes of Taiwanese folksongs and even "On top of the world" by the Carpenters. Later when I read the lyrics again, I realised how meaningful they were:

Everything I want the world to be
Is now coming true especially for me
And the reason is clear
It's because you are here
You're the nearest thing to heaven that I've seen

I'm on the top of the world looking down on creation
And the only explanation I can find
Is the love that I've found ever since
you've been around
Your love's put me at the top of the world 

The celebrations were part of the Dragon Boat Festival, which is tomorrow (the fifth day of the fifth month in the Lunar Calendar). I sat in the lounge with all these relatives and patients, nurses and doctors, and I clapped along when patients grabbed the microphone and sang their joy out. Mum was too tired, too sleepy to come out. Since she became very ill, she has been avoiding crowds. A few times during the morning when the nurse and volunteers excitedly came to invite to the party, she seemed very tempted. But in the end, she did not want to. It was disappointing, for she has not left her room for over a week, and not left her bed for almost as long. I went to the lounge  and only stayed for a little while before I headed back to the room to join her.

Even in her room, we could hear the live piano recitals and karaoke. I took mum's hand, and mouthed some of the songs, one of which is a Taiwanese song called "Holding my hand".

"Hold my hand, drenching in the rain,
Hold my hand, following your footsteps,
Hold your hand, walking our path,
Hold your hand, unafraid of difficulties..."

Just as mum was about to fall asleep again, there was a knock at the door. A man in a long white robe
came in with another doctor we had not seen before. It was the director the ward. In both their hands they had plates of fruits and rice dumplings, and even a decorative pouch filled with scented herbs as a gift. "Happy every day," the director said to mum. She smiled and smiled so much and was so touched by the personal visit and the food and gift they brought.

"I am so lucky to be here..." she said.

So the Dragon Boat Festival is upon us. But aside from the celebrations, there is a sinister side that to the festival that has not escaped my mind...

Affairs

Barely forty-eight hours after my return, I have had to go through two important experiences.

The insurance man came by mum's hospice room to discuss details of a large payout. She had insured herself against cancer a couple of years back, and the good thing is that every single hospital visit, overnight stay at the hospital (including the hospice) and every single treatment and operation is covered and even compensated by the insurance company. That was a relief to know, as the hospital bills, despite coverage by the national health insurance, have been mounting especially as mum opted for better treatment to deal with the tumour in her spine.

Then the insurance man came up to me and started explaining to me how in the event of mum's death a life insurance premium would be paid out. I was still tired from the jetlag because it was early afternoon, so  I was in a daze and wasn't really paying attention. Besides, I felt very uncomfortable as mum was right there in the room. He got out a piece of paper and asked mum to sign it in front of him. Mum grabbed a pen, and I could see her hand was shaking. What used to take seconds took literally minutes. Mum's signature was wobbly and a little off, and she struggled hard to hold the pen steady. But the insurance guy said that it should be fine, or otherwise they will call back and verify on the phone if necessary.

The very next day, I had to sneak away and 'lie' to mum where I was going. I said I was just going home to shower, as I had not been home for two days, but in fact I went to meet up with my brother and my uncle (mum's second brother), and we were going to the funeral planner to arrange affairs. We did not want to let mum know, fearing that it might offend her or make her think we are 'plotting' her passing. But we know these things have to be arranged and dealt with so we are not suddenly caught off guard, like we were last time with dad's passing.

We made our way to the funeral home to discuss details of where mum would have her farewell ceremony (funeral), where the cremation would be, and we even looked at urns (but didn't decide on one). Most important of all, we were looking for a place to honour mum straight after her passing and before her funeral, for according to Taiwanese tradition we must have a special altar dedicated to the deceased, where the spirit of the deceased can reside immediately after passing.

We looked at a few places, and either they were too crowded or too expensive. Ideally, we wanted to have it at home, like it was the case with dad, but the building manager of the apartment we live in told my brother the other day that it is not possible to do so, because the building managing committee decided to forbid anyone taking the deceased back home. It is very surprising , for why does it even matter what we do in the privacy of our own home? Further, how can a building committee suddenly do away from eons of tradition that has passed down from generation to generation as a way to honour and respect the deceased? None of us are happy about this, for it causes a lot of hassle, and may in the end end up costing us a lot of money if we have to hire a special room to "house" mum's spirit till the day of the funeral. The rent per day costs as much as a hotel room!

Shortly after lunch, we returned to the hospital together with a Toaist priest, one mum has entrusted her spiritual "affairs" to be arranged by (it is the same priest as the one who arranged my dad's funeral, one I had serious disagreements with and sometimes skeptical doubts about his ability to communicate with the dead...). The priest wanted to come see mum himself to see how her condition is, and also to ask her some questions.

The priest leaned over mum's bed, while brother sat by mum's side. I climbed onto the end of mum's bed and sat by her feet. We spent sometime discussing how she wanted her funeral to be, and what clothes she wanted. It was a difficult discussion, more because we were not sure how mum would respond to all this. But she looked very much at ease, and was very peaceful and seemed alright to be talking about this all. I showed her pictures of the dresses I thought she would like, pictures  I  had taken of her in those dresses when she wore them last.

Though tired and her voice was very feeble, we talked for quiet some time. I kept holding onto mum's hand, silently reassuring her things will be alright, and to tell her in a way, with  a 'human touch', that I hope the conversation was not too difficult or awkward.

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...

Graduation day

I called mum. It was one in the morning, one in the afternoon for her. I saw her, she saw me. She looked so thin, and her hair looked somehow as if it had thinned. She looked so ill, so scary, so weak. Her lips moved up and down like fish, as if she were gasping for air. Whatever she looks like, she is my mother, my ex reminded me.

She mumbled something. I could not hear her. She moved her thin arm slowly, and her thin, thin fingers seemed to rub her eyes. She probably had idea I could see her, see her every move.

"I've never once made it to your graduation..." she said again. "Not once..."

"It's just a ceremony..." I said, though my heart wrenched terribly inside.

How I wish mum could be with her, how I wish my family could be with me. I am so fortunate to be surrounded by friends who love me and care about me, who have journeyed from various far away places just to see me and just to be with me on this special day... But I miss my family. I wish I could walk down that podium tomorrow and walk into mum's arms, and whisper to her: "This is for you, dear mother... This is for you..."

Mum turned away and curled up in a foetal position. "I am tired..." she said. Her eyes were wide open, she looked so small, so fragile, so much like a little child. Like a little child I so want to protect and keep away from harm...

"Take care," I said, "Sleep well..."

I waited till brother hung up the phone. But even with the darkened screen of the computer, the image of mum lying there, curled up, thin to the bone and with wide open eyes bulging out o her sockets, stayed with me and haunted me. The tears waited till brother hung up the phone, and then they fell.

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.