Thursday, 28 Mar 2024

The crippling guilt of cheating death… then losing your sibling

The crippling guilt of cheating death… then losing your sibling: Two days after Eugene Costello had a massive heart attack, his adored brother did too. Their very different fates led to shattering turmoil and a family almost torn apart

You could say my brother, Dermot, and I led lives that were, at points, peculiarly parallel. Dermot — or Derm, as he was universally known — may have been three years younger but the pair of us, with blond, curly hair and blue eyes, were regularly taken to be twins, so similar were we. Even Mum often failed to distinguish between us.

Derm had shot past me in stature by our teens but we remained close, along with our older brother Aidan, united, loving, unshakeable.

So far, so unremarkable, you might think. Then let me tell you of the extrordinary twist fate had in store for us.

In August 2018, we enjoyed a family holiday. My daughter, Evie, now 14, my parents and I went up into the French mountains near Andorra to a tiny hamlet called Corneilla-de-Conflent, with lovely Derm, his wife Liz and his kids, Niamh, now 20, and Conor, 18.

The night I returned to London, August 13, I had a major heart attack, resulting in an emergency triple bypass operation and other complications during surgery, including a stroke. This left me unable to breathe by myself, in a coma and on a ventilator for two weeks. I spent a further ten days unable to walk and suffering terrifying hallucinations — I’d been shot in New York, I was being held prisoner in Dublin, I was mugged in Rajasthan.

Eugene (left) and Derm (right) at Eugene’s wedding in Kintyre, Scotland. ‘Losing Derm has led me to reflect deeply on what makes a life — and what leads so abruptly to death. Indeed, Derm’s death exposed fault lines in our family, as well as uniting us in a grief simultaneously terrible and wonderful,’ says Eugene

Derm may have been three years younger but the pair of us, with blond, curly hair and blue eyes, were regularly taken to be twins, so similar were we. Even Mum (pictured) often failed to distinguish between us

It was because of a phenomenon known as post-operative delirium that can occur after invasive surgery as one’s mind tries to make sense of being opened up and having one’s innermost organs operated upon, as well as being on all the sedatives and tranquillisers.

Finally, I was deemed well enough for my poor dad to come in very early one morning to tell me the horrendous news.

Two days after my own heart attack, precisely the same thing had happened to Derm. Only he was left in a deep coma, or persistent vegetative state (PVS). Then, after seven months, in March this year, my beautiful, kind, wise, generous and tolerant Derm died, ten days after his 49th birthday.

His passing came only after I, and other family members, went into a so-called ‘best interests’ meeting with doctors, and eventually agreed with their view that my little brother should stop being fed and hydrated, so that his life could end.

How, I still ask myself, did it come to such a ghastly point? I was distraught and felt worthless. How could I have survived but Derm, who brought so much good and love into people’s lives, had not.

I became dissolute and reckless, I cleared off to Cuba, I threw myself into a futureless, purposeless relationship with a Cuban woman. I drank far too much, I was regularly reduced to crying, unable to cope with or process the wracking survivor’s guilt that I felt.

Even as children, there was something special about Derm. Physically powerful, yes, but he had a supremely gentle nature. Pictured: Eugene and Derm with Shebba at the Cliffs of Moher in 1977

The sharp pain has slowly receded to a dull ache but tears are never far and my eyes well up frequently for no apparent reason.

Life, which had once been full of wonderful colours, had become monochromatic — and weary, stale, flat and unprofitable to boot.

Losing Derm has led me to reflect deeply on what makes a life — and what leads so abruptly to death. Indeed, Derm’s death exposed fault lines in our family, as well as uniting us in a grief simultaneously terrible and wonderful. Terrible because we had to lose Derm, wonderful because it made us thankful for having the privilege of knowing him.

One question, above all, still haunts me: did I, the one who survived, make the right decision over my brother’s death? Did we do the right thing by hastening his death?

Read on and ask yourself: what would you do? Because I strongly believe that every family needs to think how they would react if faced with such a tragedy.

Losing Derm has led me to reflect deeply on what makes a life — and what leads so abruptly to death. Indeed, Derm’s death exposed fault lines in our family, as well as uniting us in a grief simultaneously terrible and wonderful, say Eugene, pictured with his ex-partner Penny at Derm’s funeral

Even as children, there was something special about Derm. Physically powerful, yes, but he had a supremely gentle nature. Earlier this year, I asked Mum who was her favourite son. She said, in characteristic deadpan Mum-style: ‘I don’t know but I have to say it wouldn’t be you.’

In truth, I think Aidan and I both know, if push came to shove, it would have been Derm — or ‘pet chicken’, as she called him.

As children, we lived in a four-bedroom semi in Drayton Green, West London. My parents were very traditional. Mum worked full-time as a nurse while Dad was a teacher. Derm was born in 1970, when I was three and Aidan, five.

Young Derm spent hours helping Mum bake, apron and all, and specialised in millionaire’s shortbread. For one school trip, aged seven, Derm announced he was making a batch to bring with him.

Young Derm spent hours helping Mum bake, apron and all, and specialised in millionaire’s shortbread. For one school trip, aged seven, Derm announced he was making a batch to bring with him

‘Don’t you think the other boys would tease you?’ asked Mum.

Derm looked genuinely puzzled and said, earnestly: ‘Oh no, Mum, they love it. They’d expect it.’ It simply didn’t occur anyone would laugh at him — and they didn’t.

Then, once, when Derm was about 12, Dad found him in the shed throwing all the insecticides and fly-killers into a bin liner. With a combination of wounded defensiveness and righteous anger, he explained: ‘Well, it’s just not fair, Dad, they don’t have a chance.’

As Derm grew up, he remained kindly, even volunteering in school holidays to act as a companion taking people with disabilities to the Catholic pilgrimage site of Lourdes.

For all his soul, though, Derm wasn’t hugely academic, and after mediocre A-level results he began an electronics and engineering course at Salford University. Pining for home, he abandoned it after eight weeks. He returned to London and began working with an accountancy firm in Aldwych.

It was the making of him: It turned out he was brilliant at accountancy, which was soon spotted by a colleague who recruited him to become a co-partner in a new practice.

Derm was a fantastic boss. Many employees became friends, and they usually kept a box of tissues in the meeting room as clients poured their hearts out to him, leaving full of tears and gratitude. He had that effect upon people.

The other reason? It was also at the firm in Aldwych that he met Liz, the love of his life.

We stayed close as middle age beckoned. And my last memory of Derm is of that summer in France. On the final day we went for a walk. I strolled beside Dad, while up ahead Derm was sauntering along with Liz.

Liz had her arm round Derm, with her hand in his back pocket, he with his arm around her waist. Dad said to me: ‘Will you look at that? It’s like they’re as in love now as they were when they met at 19.’

Then I had my heart attack, going straight to the hospital from Stansted Airport. The next day, August 14, Derm sent me a text, though I wouldn’t see it until four weeks later because of my coma.

‘Hi Euge, I have just been speaking to Dad and hear you are about to have a bypass. Thank God you got back to the UK first. Good luck, am sure all will be fine, text me when you can xx.’

I never managed to. Because on August 16, while I was in a coma at London’s Bart’s hospital, Derm complained of feeling unwell. He went to take a bath and his family suddenly heard a heavy thud.

They raced upstairs and his son Conor managed to get him breathing again by performing CPR under instructions from the first responder, relayed to him by Niamh, his daughter. The ambulance arrived a few minutes later and took him to Harefield Hospital where they got his heart going fully again.

However, he had suffered a period of hypoxia — where the brain is starved of oxygen — for 35 minutes or so. Anything more than about three minutes leads to irreversible brain damage.

The next time I saw him, in mid-September when I managed to escape Bart’s, he was lying there, connected to a bunch of tubes. A screen above his head displayed vital data about his life. But Derm was not there — not really.

It became clear that we faced a terrible decision.

His condition was so bleak, we learned we were keeping Derm technically alive, despite the fact he had no discernible upper brain activity, which meant he was totally inert, unaware and incapable of even the slightest movement.

If the medical team continued treatment, he could potentially live — if you could call it that — indefinitely, residing in a nursing home in a twilight world.

For a man who lived such a vibrant life, this was too much to bear.

After a three-month stint in Harefield, in November 2018 Derm was moved to the regional hyperacute rehabilitation unit at Northwick Park Hospital in Harrow, North-West London. The director of the unit, Professor Lynne Turner-Stokes, chaired the ‘best interests’ meetings our family found so traumatic.

They were, she said, to get an idea of the kind of person Derm was, what he would have wanted, then to act accordingly. Liz was consistently firm in her opinion, saying: ‘Derm would not have wanted this.’ I agreed. Reluctantly, so did Aidan. My mum, Eileen, 87, felt the same.

Dad, however, was bitterly, implacably opposed to having Derm’s life cut short, something that was heartbreaking to witness.

Dad texted me this week, knowing I was writing this, and said: ‘You will remember my distress at those meetings as my lovely son’s death was discussed. I found those meetings harrowing and disturbing.’

But after four months of discussions, doctors were resolute that it was hopeless. And now Dad was tragically accepting of what was to come.

It was decided the next step would be to wean Derm off his tracheostomy in the hope he would develop an infection doctors would not treat.If that failed, they would cease feeding him. A grim proposition. It was a terrible situation, yet Derm’s wife Liz and I both agreed that Derm wouldn’t have wanted to ‘live’ completely unaware of his own existence.

Death, however, was not instantaneous for him. His was one of the earliest cases to be managed under new laws introduced in July 2018, just a fortnight before his cardiac arrest.

Many tests must now be applied to ensure patients match the legal requirements for treatment to be withheld. We faced weeks of limbo before the decision was taken.

Mum and Dad were so happy with the delay, visiting him every day. Mum would say, ‘Now, stop being so lazy, Derm, get out of bed and come home – you need to help me with my tax return’ — despite knowing this would never happen.

My brother Aidan, too, was incredible, visiting Derm every day on his way home from work, no matter how tired or stressed he was. He, too, remains grief-stricken.

Doctors finally got the go-ahead to withdraw food and fluids on March 15 this year — Derm’s birthday. Ten days later, he slipped away.

After all the build-up, Derm passed away with none of us at his bedside, with all the family just moments away, en route to the hospital. It was a strange anticlimax to what had been such a highly charged situation.

Since Derm’s death, I have found myself going through many stages of grief — denial, bargaining and more. (In one blackly funny instance, I sent a text to Derm’s phone, saying how unbearable I was finding his loss and begging: ‘Please talk to me.’ What I didn’t know was that Conor had taken over his phone and, upon reading my message, told his mother, who collapsed giggling, saying: ‘I dare you to reply!’ Thankfully for my mental state, he didn’t.)

I’ve also drunk far too much. Underpinning the turmoil has been terrible survivor’s guilt. I admit my behaviour has often been far from perfect. What sort of divine being would spare me but take my darling, perfect brother?

I once texted our brother Aidan saying: ‘I wish they had taken me and not Derm.’ He replied: ‘Stop being so bloody sentimental and dramatic; I have an early start and I am turning my phone off now.’

My relationship with Mum and Dad has improved. I spent my childhood — and a large part of my adulthood — thinking Mum disliked me, preferring my brothers. And the manner of Derm’s death, and our disagreement over it, placed my relationship with Dad under considerable strain.

Today, though, I see Mum and Dad every week, and often take them out for dinner.

A couple of times, Mum has said to me, ‘Did Derm die?’ I say he did and she says, ‘Well, of course I know that! Sure, weren’t we at his funeral?’ It’s a sign of ageing that she becomes forgetful but the old spirit and wicked humour is as sharp as ever.

There can be few parents who faced the horror mine did, of having two sons simultaneously in comas, not knowing if they would live. And in the aftermath, Mum and I have become far closer. In one phone conversation she told me she loved me. If it wasn’t the first time she has ever said that, it’s a damn close-run thing.

For all our family grief we have never shared such love. For that I can only credit one person: Derm.

So what advice would my wise brother give me — and us all — in light of all that happened?

One thing’s for sure: he would urge people to talk with their family about what they want to do if they end up in as terrible a situation as we did. He would tell people to talk about death before it’s too late. One day it could be your family.

 

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