navigating emotions and ventilators

I have wanted to write about this for so long now. But I kept putting it off. Why? Fear. And literally, emotional blackmail.

But then I finally found the courage.

So hear goes.

My father is now someone who needs lifetime ventilator support.

He is fully conscious – he can read a newspaper, solve crossword puzzles and has strong opinions on what he’d like for lunch.

He can have a basic conversation (two or three sentences at a time at very low volume – you have to stand right next to his mouth to hear him) but definitely no debates.

He can walk under heavily supervised conditions (uses a walker, can do only about 30 metres and no more, needs a person tailing him with a wheelchair in case he suddenly collapses or needs to sit).

He has lost almost all motor function and spends a lot of his time on his bed. He wears adult diapers. He needs to be bathed, fed and changed. You have to keep shifting his position on the bed to prevent him from getting bedsores.

He needs to be lifted up into a seated position. He needs to be lifted up into a standing position. If he’s standing, he can’t hold himself upright for more than a minute or two.

He can be placed on a wheelchair and taken out into the balcony along with his portable ventilator. He can’t hold himself in an upright seated position for too long. He tires out after about half an hour.

He is on dialysis. Once every six hours, thrice a day.

He is on 23 different kinds of medication.

Our home is set up like an ICU.

If you unplug his ventilator, he will fade away.

He will die. Of natural causes, make no mistake.

My father has had a career he loved and a wife who loved him. He has children who turned out to be smart, financially independent, worldly-wise and brave.

He is seventy years old. He wants to live. I don’t understand it.

Watching him breathe on his ventilator is expensive business.

2-3 lakh rupees a month, running costs. We spent five months in hospital before that, and that was 5 lakh rupees a month.

We don’t have the money. We have borrowed. We have fund raised. We have used our inheritances. We have used our savings. We will run out. 

Ventilators are enabling. This could go on for another year. Or another fourteen.

I am tired.

In the past decade while my dad lived on dialysis and my mother died of cancer, I feel like I have spent my youth caught in perpetual financial distress, emotional exhaustion and physical stagnation. Meanwhile, my peers traveled the world, moved countries, studied abroad, built their professional networks, met their mates, got married.

I paid bills, chased insurance guys, lived in and out of hospitals, administered dialysis, watched over chemotherapy sessions, scheduled appointments with doctors, tracked our medical supplies, set up more than one home ICU, tried cleaning up after my dead mother and never went on a holiday.

I can’t hear myself think.

I can’t hear myself think; my dad lies awake on his bed, thinking every day about wanting to live. I can’t hear myself think but I think he is selfish.

There. I admitted it.

I see him on his ventilator, his lungs a failure; his kidneys a failure; his seventy year old heart functioning at 50% and I wonder why we’re humoring him. I see him on his ventilator insisting that he wants to live and my conscience writhes because I want him dead. And yet I do every single thing in my power to help him with his desire to live. Because choosing bereavement is just too simple. Because we treat the admission of suffering of the care givers as unconscionable.

And because he fears death.

How is it even possible to love and loathe the same person so much?

I think the emotional blackmail of a ventilator is high order mindfuckery.