Mum's condition

"How is she?" i asked as two aunties left and headed to the elevator down. They came to spend a few hours with mum after choosing clothes for mum with me. Clothes for when mum...
I stayed home to rest for a little while, and also to cook some soup for mum.

"The condition is not good. Just let things be..." one auntie said. She used to be a nurse, and she has been so caring over the past few years, calling every day almost to check up on mum, and visiting her every week. Sometime ago, this auntie said that according to taiwanese beliefs, many critical ill people do not live for long after or before a big festival. The upcoming one, Dragon Boat Festival, is in less than a week.

"Last week she had more energy and was more talkative. Today she looks very unwell..." The aunties tried to give her some traditional noodles to eat, thinking the noodles would bring back nostalgic memories and tastes of the past. Mum are two bites, and threw up four mouthfuls... When I came in, she looked in worse state than she was just four hours earlier when I left her to go home and meet with the two aunties.

"She does not seem able to control her bowel movements. She doesn't seem to know whether she urinated or pooed..." I heard that, and felt such a deep, deep sense of sadness. My own mother, now unable to control her own bowel movements. Her dignity and worth is being further eroded. How she must feel...

"Thank you... Thank you for coming and spending a valuable weekend day off with her..." I said and gently bowed.

"Please don't say that. You and your brother have done a lot, and you should not feel so sad. Just let nature take its course," one auntie said. They praised mum, said how lucky and fortunate she is to have us as children, and to be surrounded by people who are there to help and support her in different ways. "It is because of her kindness, and all the merit she has accumulated..."

Humbly I bowed again and bid the aunties farewell. "Thank you..."

I returned to the room, and mum was almost asleep. The carer is patting her back to make mum comfortable. Mum opened her eyes, her tired eyes which had dark circles around them. She blinked quickly, something I've noticed she does more often these days. "Ask them to go already. It's too late..."
She meant ask the aunties to leave, because they have spent an afternoon with her. But the aunties left around five minutes ago. That did not register with mum.

Perhaps mum is too tired that she is not fully aware of what is happening around her. Brother told me that she has become like that since last week, and today was the first time I noticed this "lag" in her response. The doctor said deficiency in ions and nutrients may cause sensory neurones to slow down the passage of messages to the brain and slow down memory. Whatever it is, it is painful to see.

I smiled at mum, and held her hand to reassure her. "They've already left. Don't worry, you rest now... Take a good rest. I'm right here next to you..."

I am. And I will be till the end.

Signs

Mum was especially lethargic tonight. It was worrying. She was slow to respond to questions, and had no appetite. She looked very pale and so very tired. I was getting anxious. Perhaps prematurely so, but I did not know what signs to look for. This is all new for me.

The nurse came in to check up on mum, mainly to check if the IV drips are functioning as planned. That is really what they do here at the hospice ward. Check on the vital signs, make sure that the vitals do not deteriorate, and if need be boost the patient's nutrient intake through shots and drips.
Normally, she would joke a bit and try to make mum laugh. Once she came in at the same time that the carer was hugging mum and helping mum to stand. "Doing the waltz, I see!" That got many smiles. But tonight, she was more subdued, and quietly left the room when she finished checking up on mum.

I followed the nurse out of the room. I told her my concerns, and asked her what "signs" to look for. She did not immediately understand what I meant, for I was being vague and skirting around the word dying. Eventually she understood.

"Mostly it's in the breath. The breathing slows, and so does the pulse. Sometimes the limbs will turn purplish, a sign that  the circulation is getting slower and poorer. And there will be less expulsion of urine," she said. I listened attentively, and made mental notes of these signs to look for. Mum has not shown any of these, but her breathing is laboured and she often has to rely on a tube to help her get more oxygen. Her toes have turned a little purple, and yesterday the entire underside of her feet were dark in colour. But that could be more related to poor circulation...

"Some patients experience hallucinations and they see things. If it's something not too frightening, go along with the hallucination and try to imagine seeing the same thing. If it's something frightening, then reassure the patient where they are and that you will not leave them..." She was very calm as she described the signs of death. She must have seen and experienced a lot of it working at the hospice ward. She was probably there when the latest patience 'checked-out'.

She changed the topic, and asked me what mum liked to do before. "Travel," I said, and described how those picture she saw on the wall are from the trips we have taken together and of places we have been to together. I briefly told her how the last couple of years have been, and that ever since she got cancer, I have been determined to enrich her life and fill it with beautiful, beautiful memories. Did I succeed? "It has been tough, going in and out of hospital so often. But as soon as she stopped treatment, I would take her somewhere. Life has been exciting and colourful, and I think she treasures those memories". I told the nurse about our reviews of pictures. Yesterday, the same nurse walked in on us watching a video on the Canadian Rockies, and she saw how excited mum was to review the lakes and towns she has been to.

The nurse asked what mum liked to do with friends, and I answered that she liked to go shop and sit in a cafe and just chat the afternoon away on weekends. "You know, you could organise a little get together. She may not be able to go out now, but you can recreate that atmosphere and those feelings of sitting around table chatting with friends and loved ones. It's like reliving the trips you made together, but this time it's recreating the feelings and smell of a cafe. It will make her feel familiarity and ease inside. It will be god to her..."

We stood in the corridor for a while, chatting. She gave me a lot of tips on the final stage of life, and how to face it. We talked about Buddhism, and I found out she too is into meditation and understands the Thai tradition that I am practicising. The nurse tried hard to think with me what things we could still do and arrange with mum. This was the exactly the kind of support I need. The kind that can help me take away much of the pain and hurt and transform it into creative endeavours that will make mum's remaining time in the world worthwhile and meaningful, memorable and  so very valuable.

Plans are being hatched, and all the while mum was resting in the room behind us...

Checking out

I went out to the corridor, and saw a crowd of people gathered around a room toward the end of a corridor. I suspected what was happening. I saw a lady whom I saw earlier during the day weeping and being consoled by a Buddhist nun. All I heard was the lady saying: "He has suffered so much..."

Two men wearing suits walked solemnly down the corridor toward the gathered crowd. They were wheeling a simple bed next to them. Their motion seemed to be in sync, in slow motion and ever so silent.

I came out to the corridor a few moments later. The crowd had left, and they were all gathered by the elevator ready to make the 21 storeys down. I walked quietly to where the crowd gathered. There was but an empty bed, and the room was deserted.

The man had indeed checked out, and the bed was made for the next patient to check in.

Dreams

Another night full of dreams. Dreams of my ex, dreams which are so unsettling and so distracting...

I think of him, perhaps too much. I miss him... does he me? What is he doing half way around the world? I do not know. Did he break things off with his boyfriend as he promised to, as he told a mutual friend he would?  Can I write to him, call him, confide in him and not feel like I am intruding in something and not think perhaps he is with another person?

He writes to me,  he tells me how much he is thinking of me, praying for me and my mum. But the way we left things is so uncertain. He seemed to tell me to hold on, to keep on hanging there and wait for him to resolve things. But there is no assurance that he is being true to his word that he will deal with things and remove obstacles to us getting back together.

What saddens me most is that he has not called once since we said goodbye. He knows, or can at least very well imagine,  how difficult this trip is for me. Other friends have at least called as I was about to leave the country. My ex, someone with whom I've shared so much with, someone I've never had any inhibition  in opening up to over the last few years, did not even do that (to be fair, he did write a few emails...). How much does he really care? How could he say he cares and then not even bother to call since we said goodbye in such a terrible manner?  How could he give me feelings of hope and tell me he loves me and would like to be with me, and yet just turn so cold after I leave the country?

I should not be left lingering like this... Don't I deserve some clarity or at least some closure? I really don't like being left like this. It is so distracting to be left to wonder what is (if anything) between us still,  and to constantly have to hesitate and wonder whether I can turn to him and seek support from him at this critical time of need...

Clothes

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I almost cried. It was harder than I thought, and made even harder due to the fatigue I was feeling from the jetlag.

It was so easy the other day to ask mum about what dresses she likes and what she'd like to wear. But rummaging through her wardrobe hit me hard, even though there were two aunties next to me and helping me choose. I knew best what mum likes and what looks good on her. And I needed to choose four outfits for her. One would be bagged and I would have to take with me to the hospital clandestinely. It will only be opened after she passes...

I took out that dress, I knew which one exactly. She wore it first in the summer of 2003, almost a decade ago to attend brother's graduation in London. A black dress with beautiful green embroidery around the waist, to which she liked to add a colourful cape to make brighten the entire attire. She wore it last last year to attend the wedding of her best friend's daughter.
She looks so young and elegant in that dress. The next time she wears it, she will have stopped breathing...

I stroked the dress, felt the soft fabric and tried to contain my emotions. It is hard, so very hard to know next time I see this very dress mum will have gone... How do you deal with that? How can I go about rummaging through her wardrobe without her knowledge, preparing for her demise? All she knows I came home to shower and rest...

But my mind is restless and so very heavy... As heavy as the unusual onslaught of downpour that has caused several deaths and flooding all over the country...

To the dress we added her wig, shoes, socks, and according to tradition we must also prepare a pair of white gloves. more sets of clothes have to be prepared, clothes which will be 'offered' to her by burning them after she passes. But that is for another ritual, which takes place only on the hundredth day of her passing...
How can we even think of that day when mum is still around?

Carefully I bagged the sets of clothes and placed them under mum's bed. One set, the one for mum to change into when that final day comes, I placed into my backpack and planned to sneak it into mum's room.

One more thing done in preparation for that day...

Being brave

"You are so brave..." my cousin said. We stood in the lobby for almost half an hour just talking about mum. She has not seen mum for about two weeks, and my cousin visited today after work today, and also to have dinner with me. After she came out of the hospice ward, her eyes were red and moist.

"It's so hard not to get emotional. How do you do it?"

I don't know. I don't know how I look at mum everyday, how I touch her skin and stroke her arms and legs without crying. I don't know how I can look into the yellowishness of her eye whites and not quiver. I don't know how I can watch her heave for breathe without feeling pain or such resentment at what cancer has done to her. Instead, my mind seems to be filled with compassion, patience, and love... seemingly boundless love and the feeling that love (and a little foolishness and childishness) can overwhelm everything sad or painful.

My cousin hugged me, and told me about her dream the other day in which she saw a coffin and also ornaments for the deceased. She was shaken awake by the vividness of the images in her dream, and by the sight of herself howling from pain in the dream. It was so powerful that dream that she is still shaken from it all. I heard her describe it, and it sent shivers down my spine...

"What do you feel...?"

I'm not sure. I'm not sure where this calm comes from. I find myself being so calm and collected, being so stoic and perhaps even appearing unfeeling. "I know I will break sometime, but for the time being, I am able to just do things, be with her without being or becoming too sad..." I explained and compared my feelings now with feelings at the time of my dad's passing. I was so calm too, unexpectedly so. "I guess if you do everything and are kind to the person, there is no remorse or too much sadness..."

The body will decline, the body will fail and decay, but I believe the spirit will live on. And in a way, I am fortunate that mum's mind is so clear and she still remembers a lot of things from the past, and it has been beautiful viewing pictures of the places we have been together with her. I know one day she will not physically be there for me to hold or touch, but she will live on in my mind, in my heart... And I know she will be with me, watch over me, care for me wherever I may be... I told my cousin about how the month in Canada has been therapeutic and been like a pre-mourning period.

I told my cousin about going to see altars where we could place mum immediately after she passes. I told her about the frank discussion we had just yesterday about what clothes she would like to wear on the day of her funeral, and what she would like to "bring" with her. Mum replied very calmly and clearly when I gave her suggestions and even showed her pictures of the beautiful dresses she wore once. I seem to have this strange ability to describe it all as-a-matter-of-factly, which makes me so uncomfortable at times. Why is it that other people cry after seeing my mum, why is it that brother struggles to contain his tears, whereas I don't even shed a tear...?

"You have prepared well..." my cousin said.

Have I really? How can one really prepare for death? All I've done is take a bunch of pictures and memorabilia home with me on this trip, because I know it'll be the last trip. I did it too four years ago when I rushed home to be at dad's side. Because you just know. You just know...

Restless night

Had such a restless night full of dreams which woke up me several times. Dreams of my ex, dreams of mum... Everytime I open my eyes, I turn my head and can just about see her lie there on her bed. I wonder what she is thinking, how she is feeling, and whether she is in a lot of pain...

Just before sleep last night, I wrote an email to my ex. He's been writing to me the last three days, short but encouraging emails. The way we said goodbye made it very difficult to know how to contact him. He said he would "deal with things". He even told a mutual friend that things would change "in the next twelve hours" (from the moment he went off to see his boyfriend with the intention of breaking up...). I left the country, and he did not even call to say goodbye, and instead just sent me a short text message to wish me a safe journey.

So I'm left unsure what his status is now, and am very uncomfortable contacting him. Why? Because he could have just been pretending and putting up a show till I leave. As far as I know, he could tell me he wants to deal with things, but instead doesn't because I'd be gone anyways...

My unease in contacting him comes from the fact that he's told me before I am manipulative and even hinted at the fact I use my mother's situation to influence his feelings toward me. I wrote to him because I wanted to let him know the conversation mum and I had about him the other day, when i told her, in an attempt to reassure her, that my ex cares a lot about me, and that is a possibility of a future between us.

And I asked him in my email something I've been meaning to ask him, because I see it and dream about it: to be there when I bid a final farewell to mum...

I don't know why, but I only feel comfortable for him to be there when he is no longer attached to anyone. I would like him to be there, because I imagine I would need someone to hold and to be with me. I would need someone I can be comfortable with and not have any reservations confiding in. And I cannot do that with just any person... I can do that with him, but only really when he is free from obligations to another. Otherwise, I'd feel like I'm hogging someone else's man and feel the need to hold back. And I feel when that day comes, I cannot afford to hold back my emotions and feelings...

Is it selfish of me to want my ex to be there by my side on perhaps the most challenging day of my life in a long time to come? Is it selfish to only want him to be there if he is free from engagements of a previous relationship? Is it selfish to want him all to myself? I just feel I need that, I deserve that, and I need that more than ever now that I am about to lose mum...

Pictures

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I was unsure how mum would react to seeing pictures from the past. I was showing her professional pictures from my graduation, and one thing led to another, I began showing her photos from her trips...

Mum looked at them while chewing on a slice of whole grain bread and sipping her favourite hot almond tea drink. She smiled, and I smiled too seeing her smile. She asked now and then where the places were, and I filled her in.

The nurses came in, and later so did the doctor. I was sitting on mum's bed, and had one arm around her head. With one hand I stroked her hand. She smiled, and seemed to be enjoying the pictures.

"Where are all these places?" the nurse asked.

"Places she's been to! She's been to so many places!" I answered.

Appearing and disappearing on and off the screen were pictures of places far away, pictures from times long past. Ad yet, for those few seconds when we see the pictures, we are transported to a time and place that is beautiful and memorable, happy and associated with so many different sights and sounds that resurface again triggered by the captured moment in time.

I hope mum feels comforted and at ease when she reviews all these places, and reminds herself again and again that her life has been fully lived, and that her life is really beautiful.

Pictures on the wall

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Almost as soon as I returned, I began decorating mum's hospice room. To personalise the place, to make it more like home and less like a hospice. I did similar things before when mum was staying at the normal ward on the lower floors of this very building.
In my mind, if you're going to be spending some time here, why not make it comfortable and familiar?

This time I went a bit further than before. I put up more pictures, first of all because there is more place to place them, as there is a noticeboard with lots of pins you can use. But most importantly, this stay may be the last stay, and I want mum to be surrounded by lovely scenes from places she's been to if that moment does come in this very room...

There are two pictures of her, one sitting next to a window on a train and smiling so beautifully and happily. Another one is of mum placing her hand on a tall tree with tree tumour in a show of solidarity and encouragement. I remember that moment well, for she said to me even a tree with tumour can grow tall and strong. That was a profound realisation and sign that she had come to terms with her illness. There is a picture of Lake Louise, with the reflection of the sky and the mountains on the tranquil lake surface. There is a picture of a fjord in Norway, a picture of the Matterhorn as seen from Zermatt-- a place we've visited three times together! There is a picture of the sunset in Evian, where we were "forced" to spend the night because I misread the date of our flight, and another one. And there is a picture of a sunrise, taken by me at the monastery I've been to for two ten day retreats. Plus, there are pictures of beautiful autumn foliage and tulips, as well as a picture of a golden Buddha, and one of my nephew sleeping and resting his little head on his hand...

From mum's bed, the wall with all these picture can be easily seen. The nurses and doctors who come in regularly sometimes stop to take a good look. Whereas on the first day there were only three or four pictures, by the time I went home again two days later, the will had become full! "It's so touching to see all those pictures!" one nurse remarked.

Another nurse commented on the large bear I had brought with me from home the one my ex gave me once and I in turn gave to mum around a year ago to watch over her while I am not around. In his arms is a giant red heart, one I got from the mattress store when I bought mum that new memory foam mattress days before Mother's Day. My little spacemonkey whom I carry around with me on "important missions" is also in the room, and around his next is a wooden plaque I/he acquired at the little temple on top of Tokyo Tower just days earlier. On the back of plaque I wrote in black ink: Eternal Happiness, which is what I wish mum, and also the name of the spacemonkey's current mission-- which is perhaps the most difficult mission of all...

These are just some of the cute, silly objects that I hoped would bring a smile to mum's face, and warm her heart. Mum sighs and says that the pictures and stuffed animals are a bit excessive. But I know that she is touched, especially when the nurses come and stop in front of the little personalised corner of the room and admire all these things I've put up. When mum has her eyes closed and sleeps, it is comforting to know that whenever she opens her eyes, the animals and pictures are there to greet her. As am I.

Mattress

Mum got upset, and I know I shouldn't make her upset. But I tried and tried to push what I wanted to do, and to get her approval so she would be ok with it, lest I just go ahead and 'defy' her wishes. Eventually she relented and agreed, or at least stopped protesting.

Mum said she has been having trouble sleeping, and that her back is sore, even though the hospice staff changed her mattress to a very comfortable foam one. But it still is not enough.

I verified. "Is the mattress I bought you comfortable? Do you sleep better in it? Do you feel less aches and sores even after a day or two? She just nodded. To me that was the deciding factor. Ae said that it would be a shame to vein that mattress to the hospital to be used, for fear of bacteria and disease. But as I reasoned with her, it even more of a shame if a mattress of that price tag were to lie there unused.

So I rushed home, reassure her many times that it would be no trouble at all. I quickly got the mattress with brother's help and stuffed it inside a suitcase and brought it back to te hospice ward. Within ten minutes of returning, the carer and managed to make the bed. Mum lay down, and she had a content look on her face.

"See, no trouble at all! As long as you're comfortable!"

Mum's eyes were a little red and moist.

It's really the least I could do for her...

Dream

There was so much shouting, back and forth, back and forth. Angry shouting between my ex and I. There was so much anger, and much of the argument centred on getting back together, on whether we have a chance still. He launched a lot of criticisms at me, accusing me of this and that in the past. It was so dramatic, so harsh, so painful to listen to, and I just wanted to walk away... I thought to myself how did we get to this? Didn't we used to be so good, so kind and gentle to one another...? Where did all this anger and harshness come from?

Suddenly the phone rang. It was mum.

She sounded so terribly weak, and she said she was not coming to visit as planned. She went home to Taipei.

I broke down crying and howling...

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.

The carer

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There's been a change of carer since I left, and I met her for the first time yesterday as soon as I walked through the door of Room 20 of Ward 211. She's a middle aged lady originally from (North) Vietnam, and her marriage to a Taiwanese husband brought her here many years ago.

She's probably just ten years or so younger than mum, and has this "motherly" look about her. I found out that she has two children of her own back in Vietnam, a girl who is just about finished high school, and a boy who's working now and doing college at night. So she is a mother, a hard working mother trying to make a living and support her family. I don't like to call her by her name, and instead call her "auntie" I've heard her laugh and talk at times when I call home, and it is interesting to put a face to the voice.

Mum says the carer is very loyal and dedicated. She massages mum whenever mum feels discomfort, she spoonfeeds mum and knows what mum likes and does not like. She really takes care of mum and tries to make her comfortable, which is exactly what mum needs right now. It really is very reassuring, for mum's every need is taken care of. It really is very different from back then, in March and April, when I had to more or less handle everything on my own. Brother has told me once or twice already to let the carer do things, like empty the garbage or wash the dishes, but I'm still not used to that. I really feel strange asking someone else, especially someone older, to do something I could easily do...

To be honest, I feel a bit "left out", because everything is being taken care of by the carer and sometimes I feel like I'm just standing there while she does what I used to do for mum-- ad does it all the better than I ever did or could.

This afternoon, we all sat down around mum and asked the auntie to stay on. We weren't sure if she would be willing, or whether she liked working for/with us. We would like her to stay, so we don't have to go through that whole adjustment process again when the new foreign carer we applied for comes at the end of the month. It really takes time and effort on both sides to get to know habits and to get used to ways of talking and interacting. And frankly, mum needs to be in a stable and secure environment, surrounded by people who she trusts and feels affinity towards. Surrounded by people who know her needs and can accommodate them.

The carer said yes, she would stay on. And there was a sigh of relief. We were all reassured and mum looked at ease.
Though, the carer put her agreement to stay on in such a way that was perhaps too blunt. "There may not be too much time, and I want to stay till the end..." Maybe it's a language issue, words being lost in translation, and I know that is the reality of things, but still, I was afraid of how mum might feel being reminded of that. The carer said she's aware of the situation, and she had proposed it earlier to my sister-in-law, and even declined another job offer because she did not know how long she would be needed.
We just have to try and figure out how to deal with details like retaining her services and see whether we can bypass the agent (human resources agency) so that the carer does not have to have a fee taken away from her salary.

She sits quietly by mum's bed a lot, often massaging mum and every so often asks mum whether she's hungry or thirsty. I may feel a little left out because she's doing a lot of what I used to do, but she's also doing much more. Helping mum get cleaned up, bathing her (with the aid of nurses in this amazing tub that has a " lift" to lower the patient slowly into the water for a deep cleanse...), helping mum use the washroom, emptying the bile that is collecting in the pouch at mum's right side. And the carer cleans and does household chores too, which makes me feel "bad" because she seems to hardly have time to rest.

Her presence is greatly appreciated, and it gives brother and me time take care of other things, and time to cook or buy what mum likes to eat or drink.

On this last stage of the journey, having extra support and someone to take care of mum means so much...

Approaching the end

Mum has said sentences to me over the past day or so, since I arrived back, which I pretend not to hear. I do hear them, and I think I know what she would like to say, but I'm just unsure what to respond.

"There isn't much time..." 時間不多了
"I am leaving soon..."

What do I say to that? I tell her not to think too much, not to be afraid. I reassure her by stroking her arm, holding her hand, playing with her face, or by lying at her feet. "I'll be here all the time... We're all here with you. Don't think or worry too much..."

I think this is how you assure someone. I need to ask the counsellors and volunteers who are walking around the hospice ward. But I believe telling the patient who knows her days are numbered that you will be there throughout the whole process helps.

I see mum blink a lot. I see her sort of move her mouth and tongue in a 'chewing' motion. Sometimes I see her face, her thin, bony face, tense up as if she is holding back tears and stopping herself from crying. There are dark shadows around her eyes, and due to the thinness of her face, the eye sockets seem especially prominent.

I smile at mum a lot, and sometimes nothing but smiles are exchanged. I'm not sure what she is thinking, and when I ask her, she casually says "Nothing much..." I know what I am thinking when I look at her...

How beautiful mum is, how lucky I am that she is my mother! Silently I wish her peace, silently I hope and wish and pray that she is not in too much discomfort... Silently, I hope that all this will not take too long, and that she can "go" quietly, gracefully and in the dignified way that, as one friend put it, is deceiving of a "Grande Dame".

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...

Brother tearing

130612.1020

I saw him turn away for a few moments. I wasn't sure until he wiped the corner of his eyes. And when he turned back and tried to force a smile, I saw his eyes were moist and red.

What made him cry? Has brother been crying silently while I was away? He had just come to the hospital from home, where he slept. He found us on the rooftop garden. I was crouching next to mum, smiling I believe, and asking her what she would like for lunch. I proposed to go home and cook some fish soup and vegetables. Was that what made brother cry? Or perhaps the fact that I am finally back again, that I made it home, and that all that worry and fear of not making it back on time have been allayed made him cry?

It doesn't really matter what the reason was. What matters is that we are together as a family, and we will be together till the very end.

Back home...

It has been a  month, a month since I last saw mum, touched mum, hugged mum. I slowly opened the door to Room 20. Already during the long elevator ride to the twenty-first floor, my heart was pounding, my mind was wondering what I would see, how I would react to what I see. Nothing prepared me for the reality.

Things seemed to just happen, with nothing planned, nothing calculated. I opened the door slowly, and walked in. The first person I saw was the new carer, who sat resting on the sofa. Then I saw mum, who lay  on her bed and had her eyes open. She must have been counting the minutes to my arrival. Brother told me later that she was counting down the days till I arrived. And before I left home, I called to say I'd be there within fifteen minutes. Mum must have been watching the hands of the clock hanging on the wall opposite her bed.

Brother sat next to mum's bed. I approached him and wanted to hug him, but he was sitting down, and it was an awkward position, so instead I patted his back a couple of times instead. "I'm back... It must have been hard on you..."

Mum's eyes opened even wider seeing me. Everything happened so quickly. She lay in bed and barely moved, but she took her arms out from under her blanket. I leaned in close and wanted to hug her, but I was afraid also of crushing her under my weight. I put my arms gently around her, and it was then that I felt just how much she has thinned since I saw her last. I was afraid to hurt her, so I only lightly wrapped my arms around her and leaned  in closer to her cheeks. I pressed my cheeks against hers, and in her ear I whispered: "Mama, I'm back. I'm back. Sorry to keep you waiting for so long..."


We bonded starting with my long trek across half the globe to be back here. Fate was with me. In all my times of flying home, I have never landed at the downtown airport. Partly due to the prohibitive price of connecting in Tokyo to Taipei the same day I arrived (which was yesterday...), I decided to stay overnight and book a more affordable flight the next morning. As I was staying overnight, I decided to fly from Haneda (HND) to Songsan (TSA), which is downtown to downtown, instead of using the international airports which are both some distance away from Tokyo and Taipei. Fate was with me, for the very day I chose to fly into the downtown airport, Taiwan was ravaged by a terrible storm. The international airport I normally fly into (Taoyuan International, TPE) was shut down for several hours. Flights were redirected, baggage handlers could not go out to work because of lightning strikes. Passengers were stranded for several hours, some till midnight until the storm eventually died down. I was at the hospital within an hour of landing...

I carried very little to the hospital, and just had a plastic bag with me, albeit a big bag. I took out of graduation cap and placed it on my head. Mum smiled. She had seen pictures of me on facebook, but this is different. She could see me up close, feel the red and white tassel. She could (and did) personally wish me congratulations. I held her hand, stroked her head and her hair. "Thank you... thank you for everything you did to support me. This is for you, like it says in my thesis..." I hope she still remembers what I wrote on the acknowledgement page of my thesis, because this one is really for her. "The first degree was dedicated to dad. And this one to you," I said, "And if I choose to do a PhD, I wonder who I can dedicate it to. To my cat perhaps?" That made mum smile. When she smiled, she did not look like a patient. When she smiled, she was not afflicted by cancer. When she smiled, I do not notice the thinness of her arms, the dark tone of her skin, or the yellow hue of her eyes from jaundice... When she smiles, she is my beautiful mother as I will always remember her...

The nurses came in, a bunch of them. "You must be the second son!" Brother has been doing some broadcasting and prepared them for my arrival. "Your mum has been anticipating your return!" I was still wearing my graduation cap and leaning close to mum on her  bed. "Why, you two seem very close!" I was a little embarrassed.

That mum looks more ill than before did not escape me. I saw immediately she had trouble breathing, saw that her collar bones have now become clearly visible. I noticed how wrinkled her skin looks, how dry and also bloated her arms and legs were. From occasional grimaces and suppressed moans, I could tell mum was in some degree of discomfort. The details of her condition would be revealed later when I spoke to the doctor. "It's very unlikely she'll live more than three months. Two months, one months maybe. But every patient is different, and we will do what we can to make her comfortable..."

Nothing, not the feel of her bony arms, not what the doctor just told me, not the reality of mum lying in the hospice ward scared me or made me cry. It was not as I expected at all. Strangely, ever since I stepped into the hospice, I could only smile at mum. Smile as I rubbed her arms, smile as I stroked her hair and head, smile as I recounted my month away in Canada. Smile as I reassured her that I would be with her no matter what...





I stayed with mum the entire day and night

At TSA

120612.1436

"Is mum ok?" I asked brother on the phone while I waited for my suitcase to come out. What kind of question was that? What I wanted to know was wether I had time to go home first and put my suitcases down before heading to the hospital. What I meant to ask, but substituted with "Is mum ok?" was: she is still hanging on, right? I'll still get to see her, right?

That's what I meant. Crude, but that's the truth. Brother told me to go home, and warned me traffic might be horrible due to a torrential downpour last night and this morning. Indeed, the sky was so thick with clouds all the way from Japan, and it was only when we were close to the ground that I could see buildings and such. The rain cancelled classes and work.

Strange that on the day I arrive, there would be such a rainfall...
Does it mean anything, if anything?

At TVG

120612.2221

At mum's room, which has a little guest room attached to one side. I'll be sleeping here, most likely everyday till... I'm not sure till when.

I am extremely tired, and struggling am hard to keep my eyes from opening. So far, a lot of smiles and lots of time spent sitting next to mum and holding her hand.

So it feels like I never left and am back to the hospital where I've spent so many weeks with her and sleeping at her side...

Dream

120612.0622

I saw mum. She was lying in the hospital bed. She had such difficulty breathing. She looked at me, her gaze was confused and she seemed lost. I held onto her hand.

"Let's go home, mama... Let's leave the hospital..." I said. I was calm, so surprisingly calm and collected. (would I really be like this when that moment comes...?)

I woke up. It was only six in the morning. It was the third time I woke up in the night, every time due to some dream the details of which I cannot remember. But they all had mum in them. They all took place at the hospital.

Mum is holding on. She wants to see me, she wants me to be there. Perhaps she is holding on long enough for me to arrive., so that I am spared the pain of watching her suffer and watching her deteriorate even further...

I am almost home, mum... Sorry I kept you waiting for so long... I am almost home. Please hang on there...

To TVG

120612.1512

Heading to the hospital. Just dropped off my bags and grabbed a hotdog to fill my stomach. Grabbed a light change of clothes, my graduation cap and degree, and now on the way.

Hospice ward 21, room 21... I am not sure what sight or experience await me as I open that door.

I hope I can keep myself together. For mum, for my family, and for my own sake.

Landed at NRT

110612.1545


Just landed at Narita Airport. Much of the flight I spent asleep. I don't know why I was so very tired. I needed the sleep. Sleep to replenish my body's energy levels. Sleep also to keep the sadness and floating feelings at bay.

Looked out the window as we approached. A thought crossed my mind: next time I see this scenery from the air most likely a lot of things will have changed. What would I be feeling? In what mindset would I be in? When would that be?

Closer and closer I am approaching home... Sooner and sooner, I will be at mum's side.

Tokyo Tower

110612.2046

On top of the Tokyo Tower. I almost cried when I saw it glowing at a distance. My dream to visit it finally came true. My dream to walk around its base was realised...

Why is this visit so symbolic? The tower stands not just as the symbol of a nation and a city, but it features prominently in the movie "Tokyo Tower: Mom and me, and sometimes dad"-- a movie I have yet to watch, but a movie I need to watch to process a lot of the emotions and experiences I have had and am about to undergo in the coming period.

This beautiful tower, which stands so tall and brave shines like beacon in this massive sprawl of glass, concrete and steel teeming with activity and life.

As mum is getting weaker and throwing up more at the hospice ward, being here touches a deep chord of my heart and makes my spine tingle...

HND-TSA

110612.1111

On board Eva Air plane which will take me straight to downtown Taipei. To my surprise, it is another Hello Kitty jet. Life is full of unexpected surprises...

A quick turnaround in tokyo, and now on the final leg of my journey home. This is such a difficult journey. My heart is racing and my mind is so agitated. The contrast of my feelings and the cuteness of the plane interior is extreme. I just got a reply from my friend, the one who has gone before down this difficult, difficult road of losing one's mother. She wrote: "... do not question the events, just live them. What has to come, will come."

What is coming? I think I know. I have been told to expect the worst. Brother said mum's condition has further deteriorated. She has difficulty eating, and half a bowl is already a lot for her. "Don't force her to eat, because she'll get very upset. Just listen to what she wants and accord her her wishes. Don't argue with her..." brother told me.

"And don't cry. It'll hurt her if you cry. If you need to cry, go outside. Don't be surprised by what you see..."

What will I see? How has mum changed since i was with her last? How will she has deteriorated that will make my heart break and me break down? I do not know. I do not know what to expect. But it will be a test... Test of my endurance, test of my faith and courage, and test of whether the teachings of impermanence and letting go is truly ingrained in me. Did the period of pre-mourning when I was back in Canada help?

I will find out soon enough.

I must remind myself that it is ok to cry (when mum is not around...). And it is ok also not to cry. I must remind myself that the absence of tears does not equate the absence of feelings or emotions. Instead, it may signify the ultimate level of serenity, reached when you know you've done everything you can with what the time and means you have been given. And I believe I have given mum everything I possibly could...

Whatever happens from now, whatever I see and experience just will be...
Whatever will be will be.

YVR-NRT

10062012.14.50

On board plane, taxiing to take off with an hour of delay. Am so tired I slept on and off that entire hour.

So tired I cannot feel anything, and the significance of this trip has not dawned on me yet. I keep on feeling I should feel something. I keep on thinking this will be the "last" trip in a series of trips I've been making to visit mum. I keep on trying to imagine how it will be to see her again after one month... But nothing seems to affect me. Nothing seems to affect me the way I feel I should be affected. Or perhaps I am expecting to feel too much?

No tears, no tears yet... But the lack of tears do not mean anything, right?

YUL-YVR

Yul-YVR

100612.1015 YVR time

I slept for the duration of the entire flight. So tired I was, so tired I was not even in a state to feel sad or to cry. In fact, I felt somewhat excited to be boarding the plane. Strange, because this is the beginning of a very long and perhaps the most difficult trip I will ever have to make...

I was alone at the airport. My ex said how terribly apologetic he is he cannot be there to send me off. He said how he wished he were there. But he was not. He was with his boyfriend, at the house of the "in-laws". He gave me a hug last night just before he went. I was cold and distant. I did not hug back. He tried to hug me again. I felt nothing. Nothing. Not even when he whispered in my ears "I will deal with things". I did not even look him in the eyes. I got in the taxi and did not look back.

How did we get from being so comfortable in the same bed earlier in the morning to such an abrupt and unfeeling goodbye? He took a day off to attend my graduation, but a series of mishaps ruined "his holiday" (as he put it...). He went to deal with things, to break it off with his boyfriend. He wanted to talk to me first, to tell me how difficult it is all for him and how he hates to hurt people. He asked for my understanding, saying he must spend at least one night with his boyfriend. He says he can understand how I must be feeling right now as I am leaving. But he cannot understand. He does not understand. Otherwise he would be with me, comfort me and talk to me, instead of spending time with his boyfriend. He calls me "unfair" for wanting to spend more time with him. He calls me "unfair" for not understanding who he must spend at least one night out of three with his boyfriend.

But who am I to judge? Who am I, but a home-wrecker, to say he cannot spend time with his boyfriend? Who am I to get upset? I was not upset. Just disappointed. Of all days, of all moments I need someone to talk to, I need someone to see me off, he cannot be there. Just how much reassurance does that give me when he says again and again he will be there for me and wants to build a life with me? He can tell me so much, but when it is the time when I need someone most, when I am about to go on a trip that is so heavy and terrifying in many ways, he is not there... Is that not very telling of how he feels about me and how (un)important I am to him?

Too much time has been spent on this issue... Too much energy spent on something that could have been dealt with long ago. But my ex did not have the courage to do it. He chose to pretend things are all normal with the other guy, and yet simultaneously harbour such strong feelings for me and dream of being with me. He chose to maintain the charade of a relationship, while on the side he's been intimate with me every weekend since he knew of my return. I can only take my responsibility for seeing him, for sleeping with him. Because I do care about him, because I do care about him a lot and appreciate him for the happiness and fun I've only been able to have with him... I do see a possibility to start anew, to rid ourselves of our tortured pasts and to stop blaming one another for past wrongs and faults. But how can we even do that when he is still in an unresolved relationship?

How can we even become intimate and not hold back when we kiss or touch one another when my ex feels so guilt ridden, so tortured and pained?  How can anything develop if he cannot even let go of his current relationship? How can he make me feel I can trust him and be with him, when he seems to be unable (or unwilling?) to break things off with the other person?
It really is unfortunate, and the timing of my leaving and his intended day of breakup (only he knows what he really intends to do, only he knows whether he really does breakup...) is terrible awkward.

But I am away now, approaching Vancouver, and soon I will cross the Pacific and disappear into the obscurity of the crowdedness and time zone difference of Taiwan.

As I told him, I will be gone soon. So what has changed? How will things be different after I return to Taiwan? How will things be different after these four weekends spent together?

I am leaving. Everything is behind me now, and i am getting further and further away from it all. If my ex still chooses to maintain his relationship, despite his promises to break it off with his boyfriend, so be it. If that is the case, he is the one who has to continue living and sleeping with deep guilt and shame. He is the one who must keep on pretending, keep on living lies and put on masks. And how tiring that must be...

There are really more important matters waiting for me ahead. And I need all the energy and devotion to focus on those matters, and cannot afford any longer to be distracted or burdened by something that has dragged on for far, far too long...