23 June 2012

Gaspé

When mum visited Canada last year, I Wanted to take her to the Gaspé Peninsula. But we did not have enough time. Her five weeks were too short!

In the dream, I was booking tickets. Vividly, I browsed the railway company's website for the journey to Gaspé, so we could wake up and see the sunrise on the train, like we did on our way to Halifax. On the way back, I planned to book a flight. In the dream, I found a "cheap" deal, flying through some unknown places for around ice hundred dollars per person...

That was the dream... Is it another sign of a place must visit after everything is over...?

Betrayed

I was looking for my ex (in the dream, he was my boyfriend again...). Searching high and low for him in a crowded building. I was smiling because I thought he was playing hide and seek with me.

We were about to go to a party together, so I needed to find him so we can go together. I walked up some stairs and came to a library of sorts. I had a feeling he was in there, so I quietly sneaked in.

I heard his voice, talking softly in French. Soft Sweet talking in French. I followed hid voice and searched through the aisles of books. I saw him, and he saw me. On his face was the expression of being caught red handed. I immediately understood he was calling his ex. He had been lying to me, pretending that things are over with the other guy, when clandestinely they're still in touch. I immediately cried...

I ran out of the library, my heart shattering like never before. He shouted: "I can explain!!"

I jumped off a flight of stairs...

Vegetable

What a dream... Horrible dream...

They did something to mum, opened up her brain or administered some kind of drug.

"Mama? Mama? MAMA?!" I called out. She sat in a wheelchair in an abandoned square and did not respond. She stared at me with crossed eyes. She was lost in her own world. She was a vegetable...

I cried calling mum, again and again...
She did not respond.


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..."


22 June 2012

Dragon Boat Festival

I woke up from a dream, I woke up tired and agitated from a dream I cannot remember. I woke up to the sound of mum gagging an choking, and the sound of a plastic bag rustling.

Mum looks particularly unwell today, and there are dark shadows around her eyes. She has no appetite, and the vomit just came out of nowhere. The last thing she ate/drank was a mouthful of Ensure. And that was over ten hours ago...

"Open the curtains..." she said weakly. It seemed like a strange request, but I did as she asked of me. Outside the sky was dawning, a brand new day is dawning.

When I turned around to look at her and take her by the hand, she had closed her eyes and fallen asleep...

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...


21 June 2012

The magician's hat

(Liberty Times, 22062012)

"In there there cannot just be happiness, for there is of course suffering and pain.

But darling, because there is the hope of tomorrow, and faith in love, in your heart there is a magician's hat. When you put in a hanker-chief wiped with tears, a beautiful bouquet of flowers can emerge."

The Monk's visit

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

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

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

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

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

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

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

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

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

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

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


20 June 2012

Rush

I heard some noise and approached mum. I reached her bedside just in time to see her gag. Quickly I scrambled for a plastic bag, and she vomited white mouthfuls of Ensure, the drink that is supposed to contain all necessary nutrients. I gagged too, just a natural reflex. Having just downed a cup of soy drink did not help the nausea and feeling like I want to vomit...

I was in a rush to head out. The monk is definitely coming and I had to be at the main station in half an hour or so. Mum suddenly requested that she would like to have some steamed barley rice, available only at vegetarian food outlets. I had no time to go look for it and bring it back for mum.

As Brother was on his way to the hospital, I decided to call him and ask if he could buy some. He got angry at my request, as if it were such a burden to buy something for mum. I know it's last minute, I know he's busy on his way to have breakfast and has to take care of a child. But this is a request from mum, and he is on his way to the hospital anyway. Irritated, he passed the phone to his wife. I had to explain mum's request again.

I rushed to the station. We are out of fresh fruits, and i was tempted to call back and ask for fruits. But given the reaction I got, I decided to go get them myself. I know best what mum likes, so I got her some picked peaches, pineapples and kiwis. Breakfast I had on the go, a piece of bread and drink I devoured and downed in the four minutes walk to the metro.

On my way to meet the monk...

Dream

What a disturbing dream... Was with my ex, and we were in such a rush to get to a restaurant. We made it in the brink of time...

We were eating, and I had my ex's favourite bear with me. He gave me the bear to take with me on my last few trips back here, and the bear has accompanied mum and I on several trips together. The bear has such a beautiful and permeant smile on his face...

My ex was talking about something, j forget what, but it was related to mum and one of our travels. Then I saw the bear suddenly sob and cry. The bear was no longer smiling, but crying uncontrollably...

The phone call

I called my 'small' uncle (mum's youngest brother) in the afternoon, but could not reach him. The reason why I called was because I wanted him to know about mum's condition. And in a way, also to urge him to come see mum.

He just called back. He had seen pictures of us and mum on facebook, one with her and I on the balcony taken last week, and another one from today, of me washing her hair in the special bathroom. "Your mum looks well on the pictures..." he said.

I didn't know how to respond. When my uncle asked how mum is, I said she has been sleeping a lot. "Even after a long night of sleep, she sleeps and is very drowsy. She sleeps and sleeps, and eats very little. The doctor said it's a sign..."

"I understand," my uncle  suddenly sounded solemn and sad. How could he not?

"I wanted to call and let you know earlier. I know how close you two are..."

"Yes, 'big' sister has always been so good to me..." he said.

I was almost crying. Perhaps he was too. "And you have been so good to her, to us..." My uncle really has, always willing to step in to lend a hand, whether financially or otherwise. He treated mum on a trip to visit us the children a few years back when mum had very little money. He paid for mum's flight to Canada last year, saying he wanted a part in realising a dream of hers. He paid upfront the costs of the spinal surgery, and was there waiting outside the operating room last December... He has been so good to mum, and visits her almost every single week.

"I will come up either tomorrow or the day after," he said.

"Thank you..."




Watching DVDs

"Why are you wasting money buying..." brother said in a irritated tone. I stared at him and gave him an angry look before he could finish his sentence. He meant to say I was wasting money buying travel DVDs for mum to watch at the hospice...

"How can you be like this...?" I asked him back. Deep down, I wanted to say: "How can you even think of money? Do you know how long mum has?!" I didn't say it, because mum was there. But I was upset how he could even talk about money, about "wasting" money, when I just want to let mum look at places she has been and review sights she has seen before.

I put a DVD I bought the other day in, and got out the dishes I bought at the restaurant. Mum again had a request, one from last night, but I could not fulfil her request before because I could not find a place where they sold what she wanted. But today it occurred to me where I could buy typical Taiwanese dishes, dishes that remind her of the "olden days" and her childhood-- dishes that take the taste buds and memories back to the era of my grandma...

The taste of poached egg with garlic and pickled turnip, the taste of crispy fried pork rib, the pungent taste of oyster in black bean sauce, and the decadent smell of fish roe fried rice. The scent of these dishes filled the room as the large flatscreen tv began playing scenes of Hokkaido in winter time.

"didn't you and mum go there before during winter? Was it like this too?" I asked brother. Mum asked for her glasses, and brother looked up at the screen, captured by scenes of snow covered mountains and valleys.

"Yes, it was like that..."

Again, beautiful memories relieved, stories were shared, and mum smiled as she ate little bites of what she so wanted to eat.

Could any joy be more simple, more beautiful?

Visit

I didn't know how to ask, because in all honesty it's more like a request. And I was afraid it would be declined. But I have been thinking of asking the monk who lives in the mountains to come see mum. And I finally did it just now.

Mum didn't ask for him. But I think she would be very touched if she could see him again. The monk said yes. I kept on thanking him, and was moved to tears...

He will need to see how to arrange to visit, because it's not convenient for him to travel, and he needs an attendant. I am also aware that coming to see mum would be an emotional experience, for his closest disciple passed away only three year ago and also due to cancer, so seeing mum in her current state of health would perhaps evoke painful memories. In fact, when I mentioned mum was sleeping a lot, the monk said that was the same with his disciple in those final days...

It still has to be seen when and whether he can make it. But I know his visit and his presence would bring mum great comfort. And I am moved to tears just thinking about it...

19 June 2012

Bath time

Mum looks forward to bath time like an excited girl. Almost every day she asks if there is a slot open for her. There is only one special bathroom which caters to patients who are unable to bathe themselves. And to take a bath, you need the assistance of at least a nurse and two volunteers, so it's a big effort, and so the availability is limited, and mum can only get to use it one every two, three days or so.

The nurse came in in the morning and told her that she is third in line.  "Do I have to wait long? Last time I waited till the afternoon..." mum said. Moments later, the nurse came back and said she did some rearranging, and mum could go first. A smile lit up on mum's face immediately.

A volunteer auntie came in. "You should go inside and bathe your mum! Go, don't be shy! Just remember your mum used to bathe you when you were little, and now you can help her bathe. It is a very special experience, something to remember."

Personally, I actually am not shy about it. But I am afraid mum would be. Last time (I wasn't at the hospital at that particular moment...) when mum bathed, brother was told to go outside and wait. I went to help get fresh linen to change the bed while mum is in the bath, and when I came back into her room, the same auntie came up to me excitedly: "You have been chosen! Your mum wants you to go in with her!" I looked at mum, and though she said nothing, there was a look of agreement on her face. Brother was in the room too, together with his wife and baby. "You should come too," I urged him, and in the end, our whole family went into the bathroom together.

The tub was already filled with warm water, and at mum's request it was "especially warm". "I want to enjoy it more," she told the nurse before she was wheeled into the bathroom. The nurse, carer and volunteer auntie covered mum's 'parts' up with cloth, and slowly lowered her down into the tub. "Don't worry, the special bits will all be covered up by the bubbles!" the nurse joked.

 Mum seemed to sigh. The expression on her face was one of bliss and enjoyment. She told me before that when she is bathing, even if it lasts only fifteen minutes or so, she feels like she is drifting. Drifting and feeling very light. It is a wonderful feeling, she said. And for those few moments when she is drifting in the water, the sores, the pains, the physical discomforts seem to melt away into the warmth of the tub. Tub with massaging jets and temperature control!

My brother and sister-in-law and I stood by the side and watched, a little unsure what we could do to help. "Come! Come help wash her hair!" the volunteer auntie beckoned. I was excited, but mum looked a bit unsure. She has before complained that I cannot wash my own hair properly, so she must be thinking how I would manage to wash her hair. "Don't worry, your son can do it. He can give your scalp a nice massage!"

Squeezing some shampoo onto the palm of my hand, I began to moisten mum's hair. Slowly at first, as I was unsure whether mum would feel any pain, I massaged her scalp. First it was with one hand, then it was with two. I jokingly imitated what they ask at the hairdressers when they wash your hair: "Is there anywhere you need extra attention with?"  At that moment, mum had her eyes closed, I later learned from a picture that was taken of me washing her hair. At that moment, with her eyes closed, mum looked like she was lost in a blissful, blissful dream...

I massaged her head for a short while, and turned to my brother: "You go!" I urged him, tried to persuade him with gestures of my foamy hands and smile. He smiled nervously, and looked very awkward. I rinsed my hands clean, and walked up closer to him. "Go on, it's a very special experience..." Deep down, I was thinking to myself "What are you afraid of? She is our mother. This might be the first and only time you will get to do this for her..." He still looked very embarrassed, but in the end he went to stand behind mum and did what I just did. I stood by the side and smiled. Inside I was tearing, as I am tearing now. Tearing because it was so beautiful. So very beautiful...

While brother massaged mum's head, I reached into the tub and helped scrub mum's body. My fingers felt every bone of her ribs, felt the contours of her spine through the thin layer of aged skin on mum's back. Mum's legs have become so thin she can no longer stand and carry her own weight. Her hips protrude sharply and her thin arms lay by her side. Mum looked so helpless, so much like a small child who needed the constant protection and care of others. Cancer did this to her, cancer made her so frail, so ill, so thin... Cancer is weakening her body bit by bit, bit by bit...

But I smiled at mum, smiled at the experience of being able to help bathe her, clean her and make her feel comfortable and loved. Cancer can ravage her body, cancer will take her away from me soon, but it cannot ravage or take away this beautiful moment and memory created with mum and my entire family, a moment when we bonded at a whole new different level...

Back in her bed, mum smelled good, and her skin felt smooth and clean to the touch. I leaned in close and grabbed one of her arms and placed it on my cheek. Her body felt warm. "You comfortable and clean now?" Mum nodded slightly, and on her face was still the smile that could hardly contain the sensation of bliss, contentment and being at ease...

"Rest well, mum," I said softly as I rubbed her arm against my face and kissed her hand gently, "Rest well..." Mum closed her eyes, and on her face was that smile still.


Changes

The carer came into the room. "She's changing..."

I initially didn't understand what she meant.

"Her body is changing. Her body is very yellow, she's excreting less bile now, and she sleeps a lot." She said she just asked mum whether she wanted to drink Ensure, and mum nodded yes. Within the time the carer went to pick up the cup and go back to mum, mum fell asleep, and was snoring.

"It may be soon..."

Night nurse

The night nurse came in for an inspection at half past ten. I was just about to retire to my little room and mattress on the floor when she came in. It was the same kind nurse who shared with me her experience of terminally ill patients and what signs to look for at the end...

The carer described  mum's condition today and  how much she ate and expelled. "Half a can of Ensure, half a cup of fruit juice, then nothing after ten in the morning," she said, "And for dinner, six spoonfuls of congee, two mouthfuls of vegetables. That's it." I was here almost all the time, and that really was it. Even the two pieces of wonton I saved her for lunch were uneaten, and I had to finish eating them at dinner...

"And she's not expelled much," the carer added, "Nothing since lunch time" Which was over six hours ago. I looked at the nurse to see her reaction. She stayed quiet, and looked like she was deep in thought. Was she thinking what I was thinking? Was she thinking what she told me the other day about patients not expelling much towards the end...?

Mum lay on her side, and she groaned a little. All this exchange took place in a whisper. I said not a thing, but just sat on the side as the nurse and the carer conversed about mum's condition... I looked at mum, looked at the nurse and carer. Again, there was a moment of realisation...

It may not be long...

More DVDs!

In the pouring rain (a new typhoon is headed this way!) I ran to the department store. I knew what I wanted, but the question is whether they are available.

Following the successful showing of the travel DVDs on Canada, I thought it would be great if mum could watch more DVDs on other countries she been to. The Netherlands, France, Switzerland, Japan... So many places she enjoys visiting, and I am sure she would love to see again.

I went to the store and looked around.I find only a few DVDs with scenery and classical music, but only for switzerland and Hokkaido (Japan). I found two more DVDs on deep sea marine life and the universe, also set to music, and I thought mum might enjoy those too.

During dinner, we watch the DVD on switzerland. Beautiful colours and sceneries of mountains and lakes, castles and little medieval towns. I saw mum's face brighten up, and that made me smile. She is reliving memories and I hope also reminding herself that she has seen and done so much in her life...

Conflict

I went home today in the morning, and even before I opened the door, i heard some shouting. Later I found out what.

The source of the conflict is mum's farewell ceremony (as it is know in Taiwan, in other words the funeral). It'll be held at the funeral parlor, which is a large site run by the city government containing several halls where funeral services can be held. If it is like how dad's funeral was arranged, we will be given a time slot, after which the body will be taken to the crematorium and cremated. Last time it was easy, because it was just adults. But this time, we have a little baby.

First of all, my nephew is getting more capricious and difficult to handle. He really cannot sit still for more than five minutes without whining or crying, so it's really not appropriate for him to be present at the funeral. Second of all, in local beliefs, very young children are supposed to be more 'sensitive' to the supernatural, and tend to also be more susceptible to 'interference' by spirits. It is not so much mum's spirit we are afraid of, but rather the spirits of others who are lingering around the place. And god only knows how many there are, especially at a crematorium!

My sister-in-law resolutely opposes taking my nephew to the funeral, mainly because she is afraid of how it will affect the baby. Brother said that ever since my nephew came back to Taipei to stay with us, he has been suddenly waking up in the middle of the night crying. Is it related to what he sees at the hospital when he visits mum? Who knows. Whatever the reason, my sister-in-law does not want the baby to be there. She can be there, and she will be there, but just not the baby...

But this may contravene some Taiwanese traditions, for the funeral is the final "farewell ceremony", and all the children and grandchildren are supposed to be there. It may even be seen as bad omen if the grandchildren are not there, for it may forespell bad fortunes for future generations to come. Whether this is superstition or myth, the absence of my nephew at the event may trigger some talk amongst family members...

So that was the argument, and while brother and I went to look for a place to place mum's temporary shine in the morning, my sister-in-law came to see mum and told her about her worries about my nephew. She somehow went home and ended up crying, I'm not sure what about or why. All I know is this issue is a strain on my brother and his wife's relationship.

I told brother over dinner to talk things through with her, and to try to find a compromise. "Be kind and gentle, don't force things," I told him. It's bad enough there have been tensions because of brother's bad temper these days, we don't need him to come across as unsympathetic and trying to force something his wife does not feel comfortable doing. Later, brother revealed to me that he himself is not too keen on the idea of taking his baby boy to the funeral parlor. "You remember that day when dad was cremated and when we had to pick his bones?" He was referring to a Taiwanese tradition, whereby the next of kin remaining are expected to pick up a piece of the bone of the deceased and place it into the urn. "Such a cruel tradition! I still have dreams about that till this day..." brother said. It is obvious that some of the traditions here offend him and he is uncomfortable himself, let alone have his very young boy exposed to a lot of things...

In the meantime, I spoke to mum again and explained the situation. Somehow, I seem to be able to get  her attention and understanding, and mum did not feel offended or angry any more. Her initial response was that she did not wish my sister-in-law to be at the funeral, which would have been a terrible indictment and cause considerable strain on their marriage (I would imagine....). But after I explained and tried to give mum all angles to the story, she softened and said she would not mind if the grandchild/my nephew were not there on that day. "He will go visit you in your resting place, that is for sure," I assured mum, "But it's just not convenient for him to be at the funeral. You see how noisy and unruly he can become, even just at the hospital!"

So for now, a crisis seems to have been averted. And I am glad I was able to play a role in lubricating the wheels and playing the peacemaker....

This is the law!

I was surprised to hear that when mum passes we cannot go home and make a temporary altar for her at home to shelter her spirit. brother went to ask the governing committee of our apartment, and they said their regulation is such.

But I have not seen such regulation. Legal studies has taught me not to believe in anything you have not yourself scrutinised.

Most basic of all, a ban on having any altar placed in one's private home violates common sense. Why can you not do something in the privacy of your own home? As a policeman I inquired said, if you want to turn your home into a garbage dump you can! Even the police need a warrant to come and search, so how can a self-appointed "committee" have such far reaching powers? "They're inflating their own powers! Put it crudely, will those people not have people die in their homes?"

And according to the law, there is no such law! I called the city government's funeral services department, and the lady on the phone said if there is such a regulation adopted by the governing committee, it is preposterous. She was even more worked up than I was, and I was pretty upset. She even told me to go back to the committee and tone it down and explain to them that there is no such law prohibiting the establishment of an altar in the privacy of one's own home.

I wanted to verify, and also get even more support when I come to speak to the committee about this issue again, so I headed to the police station and sought advice. Two policemen were extremely kind and helpful. There is such a thing (just as I suspected...) as customs and rituals which must be respected no matter what. The law does not operate in a vacuum, and I have faith in the legal system in this country to be fair and just. The police confirmed my thoughts about the law being applied with due regard to the specific circumstances and context of the local customs. Any regulation, even if promulgated by the national legislature, let alone a puny "governing committee" of some apartment building, which contradicts a long standing custom or tradition that is not too obscene or contrary to modern day standards, can be struck down and declared void by the court.

The policeman said we don't need to go that far as to go to court, for emphasised that the law is on our side. Why can one not return to one's own home even after you have passed away? What pompous powers have the "governing committee" granted themselves that the government does not even dare to do--ie regulate and interfere with one's right to worship the deceased or follow one's religious or customary beliefs? "Don't care too much about they said. You just go ahead with you plans, and if there's anything, just call us!" one policeman said as he proceeded to write down the number of a direct line. As long as any noise we create does not result in a constant nuisance, the building's "governing committee" or neighbours who should complain cannot do anything to stop us from practising a long-standing customary rite to pay respects to one's deceased. "And if they do complain, we'll just come and the most we'll  do is issue a written notice. We won't do anything against your right to worship!"

Reassured, I went back home and spoke to the building manager. I was polite and spoke in Taiwanese to give that sense of familiarity and comradery. Initially he told me what he told my brother last week: that the building committee decided not to allow such private altars be placed in the building. His explanation was that people would complain if too many friends or relatives came to pay respects, as it would disturb the peace. I smiled and turned the comment he made back at him. "Isn't it strange that when someone is still alive it would be ok to invite a bunch of people over, and yet to have people when someone is no longer living would be a problem?" He had nothing to respond to that, and proceeded to call one of the members of this "governing committee".

A lady came down, and I explained what we wanted to do. "We just want to take mum home after she passes. All we want is to erect a little altar to direct her spirit home." That really is all we want. No fanfare, no grand ceremony, we do not even plan to take the body home (as some do do...) and keep it at home until the day of the funeral. We won't be in anyone's way.

Bizarrely, the lady relented and said it would be not a problem-- which was not what I was expecting after what was said to my brother last week. I had rehearsed all I had learned from the call to the city government and from what I learned  at the police station. I was ready to cite constitutional rights to privacy and how certain regulations can be voided if they contradict  long standing customs and rites. But it was not necessary. The battle was won even before it began.

Delighted, I told brother the great news. News that saves us a lot of worry and also a lot of time and money needed to look for an alternative place for mum's altar when she passes away...








18 June 2012

Incontinence

"You know about mum's incontinence?" brother asked. What a way to start a conversation in the morning...

"Yes, I know."

"You know she can't differentiate between urinating and defecating? I don't want to scare you, but I've spoken to a number of people, and it's a sign at the end that the bodily functions are failing..."

I know. I know. I've seen how mum has to wear diapers and has to have her diapers changed every hour or so. The carer said there's often poo and pee at the same time, even though
Mum doesn't eat much. Even the nurse is puzzled where the faeces is coming from... I know. I know. I know...

Mum is declining... Her life signs are fading. I know, and I do not flinch. Not yet.

Discomfort

"What's wrong? Tell me!"

"Stop bothering me!" mum shouted and contorted her face. She was in a lot of pain, but she would not say where or why. I can't help her if she does not say why... And it hurts that she's shouting back at me.

I held her hand, swallowed my hurt. I know she does not mean it. I know she does not want to get angry. But the physical pain can be so overwhelming, can swell the emotions with anger and frustration. That's why mum bursts out. She cannot control it. She cannot help it...

"Would you like some water? Chapstick for your dry lips?" I gave her a sip of warm water, just the way she likes it. She pointed to the perfume humidifier. "Relax a bit..." She meant turn it on, and let the scent of lavender fill the air. Let the relaxing scent fill the room.

My hurt dissipated. It is not her fault.
Mum is in pain, but she cannot help her anger...

Dream: New Zealand

Had such an intense and vivid dream. Was onboard a beautiful aircraft of Air New Zealand (for some reason... I've never been to that country. But now I suddenly have an urge to...) I was flying there, and half way through the flight I spoke to one of the flight attendants to upgrade me to premium economy. They put me in a cabin and the chair was very spacious and I could lie down.

Suddenly the plane banked and stalled. I looked out the window and could see trees and houses. We were landing, an emergency landing. There was no warning at all and we just landed in the middle of a street. The plane remained intact, and nobody died or was injured. Everyone got out unscathed and we wandered around a bit before the captain said it's ok to fly again...

The plane took off, but it suddenly transformed into something else, some kind of spacecraft... Suddenly my ex was next to me, and we were sitting very intimately together. The craft soared into space and just vanished...

I woke up, tried to figure out where I was. And all this time have this longing to go to New Zealand, and to go there with my ex...

Talk with sister-in-law

I hadn't gone home in over two days. And I haven't showered in just as long. Brother came to the hospital with his family for lunch, and we sat around mum's bed and ate lunchboxes while watching a travel programme about Canada. Later, brother volunteered to stay at the hospital and give me an opportunity to go home and rest.

I got home, exhausted, but still had to empty the fridge a bit and go out to buy some chicken drumsticks to boil soup for mum. The fridge had not been opened for a few days, and old vegetables were going rotten and smelly. I put the chicken and mushrooms in the rice cooker to brew, and was just about to lie down when I heard my nephew playing.

It was supposed to be his nap time, but he was busy playing with his mum's makeup box. I entered their room and sat down, and handed my nephew a wooden toy. A puzzle in the shape of a caterpillar's body. Perhaps a bit advanced for his age of nine months old, but still he's a clever kid, and might be able to figure things out soon. But by the way he took the pieces and began to put them in his mouth to grind his itching gums (he's teething...), he still has a long way to go!

I played with him a little, and all the while chatted with my sister-in-law. It's rare that we do that, and I wanted to know how brother is doing.

"He's grumpy a lot these days. Every time mum's not feeling well, he gets very moody..." she said. "it's understandable, and I try not to get in his way. But his mood is very bad these days..."

She said mum's condition has really affected him, but good thing is that she revealed my brother talks to her about everything. That's what I really wanted to know: whether he has an outlet and whether he talks to someone, because growing up he never was one to open up, at least not to us the family. I told him recently that he's lucky to have a wife, and hoped that he would talk with her. And I was relieved that he does, because we all need someone close and someone we can trust to talk to in the face of something as daunting and overwhelming as the process of losing a dear one...

"He really cares about mum, but he just doesn't say it. He may be strong and buff from the outside, but he's often afraid and has a lot of trouble feeling safe and secure..." My sister-in-law told me about brother's fears of mum returning home. Not that he doesn't want her to, but just he would feel so terribly responsible should something happen to her at home. He already feels bad that she's not getting better (he told me that himself... And I told him we've all done our best, and her condition is such she'll not get better...)

"he's really done a lot in the last month or so..." he really has. He managed to get large insurance payouts, help mum redraft and legalise her will, help mum be officially registered as a hospice patient with the option of home care, he's managed to find a suitable location for mum's remains to go to, one that even mum approves of. And he's done it all while being a part time dad and a husband. That's a lot!

The talk with my sister-in-law really helped me to understand better how brother feels and where he's coming from when he's moody and demanding. And it also helps me to be closer to him and see him in a different light. All of this will help us to grow closer together and to help ease things when we come to deal with and come to terms with mum's passing and arrangements that come afterward...

Order

"She wants drunken chicken..." brother said over the phone.

"Drunken chicken?" I asked. I know the dish well. It's chicken soaked in aged wine to give it a cool and refreshing taste. "That's what she would like?"

"Yes, drunken chicken and some stir fried vegetables."

I did not ask further. It is not a time to ask questions. As the doctor said repeatedly, give her what she likes to eat, give her what she thinks of eating. Let her eat as little or as much as she would like.

I had a place in mind where I could get these two dishes. It's restaurant we have frequented since we were children. I ordered the dishes mum wanted, and two more dishes. A spicy dish of Sichuan origin, containing aping onions, pigs blood and intestines (definitely not kosher or for the faint of heart...). Mum, my brother and I love that dish. And I also ordered some steamed "spiral buns"-- a sweet pastry that is light and easily to chew and digest. And I just spend two hours ( or actually, the rice cooker...) brewing a pungent chicken soup filled with five different kinds of mushroom.

It'll be a feast tonight in Room 20!

Diagnosis

"For two days she's well, and the third day [her health] decline[s]..." That was how the doctor described mum's condition. They tried to take some blood samples, but her blood vessels have shrunk to an extent that it's next to impossible. Only after poking in two areas did they manage to draw a few milliliters of blood. I watched and cringed as mum lay there with a face of agony...

The tone of Mum's face is especially dark today. And for the entire morning she writhed in bed in obvious discomfort. It's been four days since she last got out of bed. The last time her knee buckled when the carer and I tried to hold her up. That was cause for quite a scare, and it left mum gasping for air...

Two steps forward, three steps back. Mum is in decline. Every day she says things like: "It may not be long..." or "I'm just waiting..."

My nephew came and we all had lunch together. Mum had a small piece of chicken and a bite of rice and a mouthful of vegetables. That was her lunch. We watched a DVD about Canada, and we reminisced all the places we have been together. For that hour or so, she was lost in the memories of those travelling days gone by, she was focused and amassed by the mischievous grin of my little nephew who likes to wriggle like a worm and who likes to reach out and touch mum's arm...

I stroke her face, I stroke her hair, I touch her cheeks, I press my cheeks against the palms and feel the weak grasp of her hands... There are moments when I think to myself, when I see her gasp for air or close her eyes and grimace: "Is this it...? Is this the moment...? Is this how it ends...?"

But mum's life and fate have not run their course just yet. I keep on telling her "It doesn't matter how long... Don't think about it too much..." But I know deep down it matters, because she is in pain, she is not feeling well, she is suffering-- if not physical discomfort then she is suffering the humiliation of being mentally so wide awake as her body breaks down. The humiliation of being unable to walk, being unable to control her bladder or bowels, of having to wear diapers and being unable to change them herself and needing another to clean up after her...

Hang on there mum... We are here with you.

17 June 2012

Shopping for mum

"What are the shoes for?" the young lady asked.

"They're for... They're for..." I stuttered and struggled to find the words. The words were on the tip of my tongue but they did not dare to escape. Until: "For the deceased."

She did not looked shocked or surprised. Perhaps it's because the store is on a busy street next to two big hospitals. Perhaps she got this kind of request before. "So we have here this kind of shoes made of fabric."
She showed me ones that were for young girls. A bit too flashy and hip for the dress I chose for mum to wear.

Then she showed me another pair, which were more suitable. Black shoes made of fabric with a strap down the middle. They were decent looking. Only shame bit about them was the fact they were made in China...

"There's not much choice, not at this hour..." the lady said. "And it's taboo for the shoes to be worn by someone younger..." I wanted to say that I'm not in a hurry to look for the shoes, and that I was buying them in preparation for mum's passing. I wanted to say it might be very soon. But that conversation only played out in my head. All I did was nod and paid for the shoes.

Together with the pair of white gloves I bought at a fashion accessories store, I headed back to the hospital. The white gloves are another part of tradition, and i managed to some for ladies who want to protect them hands from sunburn while riding motorcycles. The fabric shoes are for mum to wear. They have to be fabric because they will incinerate better. Leather shoes might not completely incinerate, and I was told that you run the risk that part of the body is not completely cremated. That would be just horrible... Horrible...

I have what we need now. With the dress I chose and placed clandestinely in the cupboard in mum's room, we are now prepared for that moment. I took out the shoes again to inspect them and carefully put them back in their packaging and original box. Mum slept and snored a little with her mouth open.

The next time I open the box, mum will no longer be snoring...

Deterioration



Mum heaved from a shortness of breath, and her body trembled terribly. She could hardly speak from the trembling. I watched in horror and in pain as the next couple of hours of drama unfolded...

Late afternoon, around three or so, mum suddenly complained that the room was getting very cold, even though the temperature was set at twenty-five Celsius, and outside it was one of those hot and humid pre-typhoon days when all the clouds have been more or less sucked away. We put on two blankets, but still mum was cold. My plan to take her out for a little walk in a wheelchair, which would have been her second outing since my return five days ago, had to be cancelled. She was in no state to get up.

For a good while, she remained cold and ran a low fever. Brother and I sat by her side, and I stroked her hand and arms continuously to try to warm her up. She was short of breath, and gagging at the same time. She looked so scared, so very scared. I too was scared... "What if today is that day...?"
My mind kept on having this uneasy feeling that something was happening, and for the most part of the afternoon (and even now...) I felt such a terrible headache and dizziness.

The nurse came in frequently to check up on her and monitor her vitals. Even the nurse was lost as to why mum was having a strange episode of trembling cold and shortness of breath, even with the oxygen tube attached to her nostrils. She had no appetite whatsoever, and only drank half a cup of Ensure supplements and half a cup of blended juice. That was it for the day...

I don't know why but I have such a terrible feeling... Terrible feeling. It was not quelled when in the evening mum said at one point, so weakly: "It may not been long..."

For much of the day, since the start of the breathlessness and trembling spells, mum lay there in great discomfort. I can see it on her face, I can see it in her eyes... There is such fear, such fear for the unknown...

And I too am plunged into this dark spiral of despair and helplessness, and struggling hard to find my footing and be strong...