Consultation

The doctor agreed to increase the morphine dosage and to give mum a sleeping aid. If need be, additional injections can be administered. It will reduce her anxiety and feelings of pain and discomfort. Mum has been extremely agitated and looking very pained and anguished for the past twelve hours. It was a very rough night with little sleep.

"I'm right by your side, mama," I told her earlier, "I'll hold your hand..." Mum looked at me and nodded. She said nothing, but she nodded. She looked, at least for a moment, calmer.

"From our observation, two, three days," the doctor said. Perhaps today the IV will be removed. The doctor also advised not to feed her anything, for from what he can see, mum seems to be eating for our sake and less because she wants to eat. "Frankly, her insides may have become more blocked. And it is causing her discomfort to eat and drink too much."

Brother and I walked out of the consultation room (beautifully called "Room where the hearts meet 會心室). We seem have decided mum's life. The doctor said the most they can do is make her sleep more, because by sleeping mum is escaping from whatever pain may be there, whether physical or mental. The body will take it's natural course.

Soon, soon, mum will no longer be gasping laboriously for air...

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...

Pain and morphine

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

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

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

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

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

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

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

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

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

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

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

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

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