Summary

The author recounts the emotionally charged experience of being at their father's bedside during his final days in a hospital stroke ward, leading up to his death.

Abstract

The author describes the twelve-day vigil at the hospital where their father lay in a coma after a stroke, detailing the range of emotions and the difficult decision to not prolong his life artificially. The narrative captures the physical and emotional decay observed as the father's body shut down, the struggles with the legal constraints on euthanasia in the UK, and the poignant moment when the author gives their father permission to let go, which is followed by his passing. The author reflects on the complex nature of their father's life and death, and the painful choices that had to be made.

Opinions

The author believes that their father's potential future with a severely damaged brain would not have been a life worth living.
The author seems to have a conflicted view on the illegality of euthanasia in the UK, indicating a sense of injustice and frustration at having to make life-ending decisions instead of allowing their father a peaceful and dignified death.
The author harbors a sense of guilt and responsibility for the decision not to use artificial feeding, likening it to a death sentence, but also acknowledges that it was the only humane option given the circumstances.
The author holds a deep respect for the medical staff who provided care and maintained dignity for their father in his final days.
The author expresses a belief in the importance of being present at the moment of death, finding comfort in the possibility that their father could hear their final words of permission to pass on.

I said “Dad, it’s OK, you can go now,” and then he died

Twelve days to say goodbye

In my small box of treasured possessions, I have a booklet that I made nearly ten years ago, after my Dad passed away.

It’s only A4 paper, folded to make a small pamphlet. Nothing much. I used each page to paint and draw a snapshot from the time we spent at a hospital Stroke ward.

Twelve days of unrelenting grief, pain, anguish, anger, boredom, impatience, hurt, frustration, shock, shock, shock.

The hospital

No emotion was left off the table. The whole range came to visit the private room where my Dad lay immobile. Immobile except when his eyelids twitched a little, or maybe he grunted, giving those who wanted to hang onto hope until the last possible moment, that he would wake up and it would be fine.

He wouldn’t. It wasn’t. I didn’t.

I knew if he did pull through, yanking on the lifeline cast to him in the depths of his blasted brain, he would not thank us for it, even if he could communicate — and we were given no real hope of that. We saw his brain scans. His skull was more than half empty — a big black whole where his brain should have been.

To me (and thankfully to his wife, my sister and my step-siblings), that future with a half-empty skull would have been an barely an existence, not a life to wish on anyone.

He was only 60 years old. He had squeezed an inordinate amount of living into his short life. Five marriages. An honour from the Queen. An unstinting dedication to the environment through his pioneering work. Being part of the establishment and shaking things up from the inside. Making his voice heard.

He was a complicated man. He died in a complicated way, or so it felt to me.

I wished he had died straight away.

Instead we were like moths to a flame for 12 days. For me it was get up, get the train to London, get the tube, get another train to the hospital town, go to his room, sit, read, talk to my family and Dad (they said that in a coma, hearing was the last sense to go), get coffee, go for a walk in the hospital grounds, go back to his room, get more coffee… repeat for hours, do the reverse train journey, go to bed, get up.

We paused our lives to stand guard as he left us.

Euthanasia is illegal here

I wished he had died straight away because we wouldn’t have had to choose.

Euthanasia is not legal in the UK. Instead we had to discuss whether to ‘feed’ him via a tube or not. If he was ‘fed’ that tube could not be removed. That would have been his existence, and ours, until he died from complications which could have taken years. We had to make that choice at a time when we were all reeling from the shock.

We chose not to take that path. We sentenced him to death. But then there was no option of life, not the one he, or any of us, would have wanted for him.

It was brutal.

Decay

We watched him fade. We moistened his lips with soggy sponge squares on a a stick. We watched the colour of his hands and feet change to a mottled purple as his organs shut down. His skin changed to a urine yellow. His body slowly shut down.

We watched through an almost closed door as nurses cleaned him and, bless them, talked to him as they worked.

We watched as an auto syringe pump was attached to him, pumping measured doses of morphine into his body to ‘make things easier’ for him. It had a lock on the casing. I fantasised about breaking it open and giving him the entire dose, just to end it all for him, for us, for me.

The final day

That final day, I had a feeling that he was nearing his end. I had watched him decay for 12 days. I had read so many articles on my four hour a day ghastly commutes that I knew the signs to look out for. it was how I retained a sense of control.

Unusually, my step-mum and I had decided to go back to the hospital to visit him that evening. Unusually I had decided to stay with her overnight. The stars aligned. Unusually.

We sat in his room. The window was partly open, the summer breeze and the smell of jasmine wafted in. A peacock butterfly, his favourite, fluttered in and fluttered out.

Time passed.

The death rattle is just that. The clogged chest full of sputum and who knows what making breathing harder and harder. The body is a machine that isn’t meant to stop. The heart wants to keep beating. The lungs still rise and fall.

The spirit does not want to leave.

His breathing was slow, shallow, uncertain. We thought he had stopped at one point, and then he breathed again. There was no rhythm, just the last, painful gasps for air.

I had my fingers on his wrist, feeling for his pulse (the Red Cross and Girl Guides had taught me well). It was still there, barely.

He needed to go. No more. No more. No more.

My step-mum nodded. We knew it was time.

I leaned forward and whispered in his ear.

“Dad, it’s OK, you can go now.”

And then he died.

They say the hearing is the last sense to go.

I have to believe that it’s true.