Return to the hospice

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

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

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

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

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

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

Condition

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

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

Tonight... Maybe this is the night.

We are all here with you, mum...

Restlessness

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

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

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

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

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

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

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

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

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

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

Decision

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

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

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





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

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

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

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

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

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

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

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

Wednesday 27 June 2012

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

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

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

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

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

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

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..."

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...

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...