Flying home

I was already awake, but too tired to get up and start the day. My phone rang. It was my brother.

I had waited for him to call till two in the morning. The fatigue brought me to sleep. Half past eight he rang and talked about the day and visit of the hospice carer and family doctor. "It's time..." they said. Time to enter hospice care. She is now on the waitlist for a room.

Brother kept on saying it's not yet that serious, and told me to stay put. But really what does it mean to enter the hospice ward?

I know, some people go in and ate discharged home a week or two later. But some never make it out.

Brother talked more about arrangements. At this stage, a close friend of mum's suggested looking at a place where we can place her altar foe the period from her passing to her funeral. Brother mentioned more about insurance payouts and inheritance. I listened, but not much of it registered. I know it is important, but it's just money, right? Money... Money.

I proceeded to book a ticket, flying out Sunday (four days from now). I hesitated to buy a ticket, hesitated and shopped around for a convenient flight that would allow me to fly with an upgrade on the long journey back to Taiwan (and back here, eventually). I know, how can I even think of luxury (and collecting air miles) at this point? But I think I really need it, I really need it to prepare myself mentally for the journey.

It will be a long trip, lasting a day and a half, and I should get there on Tuesday afternoon local time. Brother told me to wait a few more days till I buy a ticket, but I cannot wait. I want to know when I'm going back, I want to have the security of a ticket...

Things may change, circumstances may deteriorate, but at least now there is a date and a time...

Breakdown

I was talking on the phone with my ex. "I just hope she is not in too much pain..." he said.

"I hope so too... I hope so too..." I uttered.

"I wish I could give you  a big hug..." he said. And the tears just broke loose from my eyes. I had t cut short the conversation and just cry and whimper. I could not bear to speak to anyone. I had no words, and was so very tired, so hurting inside.

The whole evening I have been waiting for brother to call back, as he said he would. I called earlier in the evening to see how mum is doing. They were busy, as for the first time the hospice nurse and a doctor came around to check up on her. They are putting her in the queue for a bed at the hospice ward. They want to take her in for some IV drips. At the hospice ward...

I broke down, because I could not bear the thought of mum entering there. As I told my ex, "It is the first time she's going there. Maybe the only time..."

I cried for a while on my own while my cat nudged me and walked around my feet. It is her way of comforting me, I know it, I feel it.

Brother still has not called back, and I tried to call twice already but there was no response.

It will be a long night...

Hospice agreement

I hesitated in signing the hospice care form. Not because there are certain clauses I do not fully understand (legal language in any language, even if it's supposedly my mother tongue, is hard to decipher...), but mainly because it feels so important, so (literally) life changing. (And I guess being a lawyer-in-training, I am always very careful when I come to sign documents)

I had to sign it, as the closest kin, which I found strange because mum is the one whose life is being decided. The family doctor who is in charge administering 'entry' into the palliative/hospice care programme came by and just dropped off the consent form. I was temporarily away, visiting mum's neurosurgeon, so I missed (who I believe is a) her. It was me who arranged for mum to see the family doctor, for I wanted her to fully understand the entire procedure and what hospice care entails, but somehow I have to first sign the consent form, and then they will send someone to come see mum and talk to us about the the hospice care programme.

I stared at the piece of paper, and gave it to mum to read carefully. She already has an idea, as I have been talking to her about it on and off, and in addition I gave her a number of brochures which I picked up from floor 21 to read. "This is what I am wishing for," she said. A sentence I have been hoping to hear from her loudly and clearly.

But still I felt uneasy in signing the form, and I read the piece of paper again and again. I knew what it all meant on paper, but I still had questions; questions which would only be answered if the family doctor did not come back to see and talk to us again. What reassured me was a clause which said if need be, the patient and/or relatives can opt out of the programme at any time.

I sent a text message to my brother, who was half way through his work day in Austria. Such an important decision cannot be taken lightly, and mum is not only my mother, but also that of my brother. I have been talking to him about it on the phone over the past few days, so he is aware of what mum and I have agreed to do. But still, I needed his explicit approval.

"OK" was the response that came back from my brother within a minute or so of me sending the request for his consent. It was a disappointing reply, somewhat emotionless in light of the decision that is about to be taken, but it was precise enough for the purpose I guess. An hour later, my brother texted again and asked me if mum and I were alright, especially in light of making such an important decision.

The agreement is still lying on the table, dated but still unsigned, almost ten hours after I received it and read it again and again. I don't know why I am hesitating still, for I have mum's agreement, brother's consent, and I can always choose to back out if that is mum's (or our) wish.

Just the fact that I can decide mum's course of (or, to be more precise,  termination of) treatment is daunting, and the responsibility is terribly heavy...

(animation entitled "Mama's smile" about a boy wondering why his mother is going on a long, long journey...)

What is hospice care?

Though there is a social stigma surrounding death and dying in Taiwan, and people tend to shun talking about it, the relevant law on palliative care has already existed since 2000. Earlier versions of it in the early 1990s were specifically aimed at terminally ill cancer patients, and the law permits patients (and relatives) to choose to stop all attempts to medical treatment and pass away in a way that is comfortable for the patient, and comforting for the relatives.



 
According to a "Quality of Death Index" compiled by The Economist, Taiwan ranks 14th in the world (and 1st in Asia) as the "best" place to die in a dignified and pain-free manner. And the country's National Health Insurance (recently featured as a model for the US' Medicare reform) shoulder's the vast majority of the costs of palliative care.

A series of promotional videos produced by the Hospice Foundation of Taiwan explains to patients the possibility of leaving peacefully and painlessly.

The one above, captioned briefly:

"Terminal cancer in the final stage,
Afraid of pain, not afraid of death.
The feeling of pain is more demanding of your life than being ill.
Hospice/palliative care,
Medical intervention to alleviate symptoms
Professional stopping of pain...

A world of no pain and suffering, of peace and quiet.
To safeguard the dignity of life,
the quality of the end."

Hospice care

(translation mine)

"Hoping our patient and relatives
Can have additional warmth and care at the most difficult moment,
So the person who is ill can have less pain and suffering,
So the family can have more reassurance."