Blog #4 The Vigil

It isn’t always a linear process, the end of life. I experienced it 25 years ago when my brother died of cancer. He was a young man, so there were many interventions and actions taken to try and stop the cancer. The chemo, the bone marrow transplant, the operations, the radiation. Until suddenly it was all over and the word “palliative” was thrown out. “Comfort care”. All that was then offered was pain medication and counselling for the family. I remember being surprised. I felt a little abandoned by the system, truth be told. We tried so hard, now we just give up? But it is a numbers game with cancer, and the numbers don’t lie.

But what I remember most were the ups and downs. The moment of “the markers are good” would bring elation, hope, and relief, then a week later “the markers are bad” would bring despair, rage, sorrow.

The roller coaster was hard to take.

Today I find myself again in the nether world of ups and downs. Mum had a fall, there “has been a change”, so there is this holding of breath while we wait and see what the future holds. Will she suddenly get out of bed and start walking and talking? Well, of course not. But have we reached that “comfort care” stage? Or can we continue daily with the spoon feeding, thickened food for weeks, or even months? The answers I get are as varied as the people I talk to.

Its not that I want this to end, its just that the uncertainty is so hard to just hang out in. How long are the three daily visits going to last, and can I keep it up? My cousin has stayed all day for three days while I’m at work. That won’t last past this week, surely? But have I set the bar too high? I cant suddenly STOP coming all the time just because I’m getting tired. There is panic, fear, exhaustion and so much uncertainty.

It also seems so rude to ask. “How long is this going to go on, I’m getting pooped” is not exactly polite. It’s not about me. It’s about respect for the process, accepting what is and learning to adapt to the new reality. But there is a huge emotional toll. I find myself snapping at co-workers, sleeping poorly, crying over songs on the radio.

All normal. All part of the seven stages, I’m sure. Damned annoying, though. I get angry when people want to book meetings. What if I’m busy? Don’t you get that my life is on hold right now? Oh wait, I didn’t tell you about this because it seems silly, self-centred and really none of anyone’s business.

Finally, there is the reminder that we will all pass from this world eventually. This is a natural and messy process, like birth. I need to hold space for it, no matter what is to come. How long will it take for me, when it’s my turn? And what will my children be thinking??? Aye, there’s the rub.

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