End of Life Ireland

Brendan Clarke

Up to mid 2022 before being diagnosed with MND, Brendan was living a full life, one he fully embraced.  Earlier that year he was in the Canaries and Barcelona. Wherever he was, he’d walk anything from 10 to 15 miles a day.

In Ireland, Brendan would regularly be up and down the country seeing family and friends, always busy. But life changed quickly as MND set in as Brendan said, he was “stuck in a wheelchair” and knew he was fast deteriorating.

Brendan asked to meet with the Dail’s Joint Committee on Assited Dying in May 2023 whilst he still had his voice and could be physically assisted to come in to the Dail. This was not granted before the summer recess. Instead  a written or video submission invited. 

This is Brendan Clarke’s submission to the Joint Committee on Assisted Dying

Brendan Clarke’s nieces Sarah and Tara supported his decision

Brendan Clarke in conversation with Janie Lazar, Chair of End of Life Ireland, May 2023

I met Brendan Clarke in May 2023. Brendan had hoped to meet the Joint Committee on #AssistedDying but it was not meant to be. His urgent request, despite his increasingly debilitating condition, was scheduled for October instead. 

Before his death on the 3rd August, Brendan used what voice remained to support the campaign to see legislation for Assisted Dying in Ireland.

Brendan Clarke is living with MND. Or as he says, ‘existing’ with MND.  He lives on his own, just about managing to get through the day with the help of carers and friends who he calls his ‘angels’ and they are.

Every day, friends on whom he has become increasingly dependent call in to give him a hand with the most rudimentary of tasks. 

When we first met, I was taken with the sparkle in his eyes as he willingly shared stories with me.  About family. Love. Travel. Life was for living and Brendan lived it to the full. 

Now 72, he spoke openly with me of how accepting his family was when he came out as a young gay man in a very catholic Ireland, which was only decriminalised in 1993. 

He speaks fondly of the lifelong friendships he made in his working life. When we talk now, it is clear how ‘big’ and ‘full’ his life was. Full of fun. Of travel. Making the most of all life had to offer. If there were one place he would have loved to revisit, it would have been Torromolinos. 

The parties. The fun.  Different times. Especially once Brendan retired from a long career in Arnotts when he travelled even more.

Brendan is a man who inspires great loyalty, evident from the full support he’s received from his Arnotts ‘angels’ once he let them know he’d decided to speak up for Assisted Dying.

True to his character then, being someone of great integrity able to see the reality, the facts of any situation. Honest with what lies ahead. 

Talking with his family, the question arises, is it only then, when we see someone we love suffering, we can begin to understand why this legislation is so needed? 

Our conversations go on to cover so many things like his 70th birthday which was during covid when he was in his old first floor apartment which he loved.  To celebrate his three nieces arranged for him to be serenaded by an opera singer from the car park.

Loving opera as he does, no surprise that ‘Carmen’ is the ring tone on his mobile; his lifeline to the outside world.  

At first, Brendan says of course it was hard to accept the diagnosis of MND. He knew this was a journey that was only going one way. Now as MND has taken control of his life, he is under no illusion as to how his life is likely to end.

“This is an awful fucking disease,” he said. And he is right. There is no cure.  The IMNDA do incredible work but the reality of life for those living with this cruel condition is horrendous and tough for his family as they see him deteriorate so quickly. 

For Brendan’s family,  it is heartbreaking. I see how much his nieces want to hold on to him to but know they have to be strong enough to ‘let him go’ and they are torn. When you stand back and look at the process of dying, it is natural to want to hold on. It is what we all want to do against the odds.  

At our first meeting, just as the Oireachtas Joint Committee on Assisted Dying began their Public Meetings in June, Brendan told me he would want to have the option of an assisted death if it were legislated for here, something he had felt apprehensive about discussing with his family even though he wanted to. 

He knows legislation won’t come in time for him, but wanted to do something to make a difference and let politicians know why choice matters.

He asked us to make a video of his testimony as his condition is deteriorating fast, his voice becoming weaker by the day and in all likelihood, he feels he won’t still be here to meet the committee in person.

He knows legislation won’t come in time for him, but hopes the Oireachtas won’t delay.  

His hope and that of his nieces Sarah and Tara, is that the recorded conversations they invited us to do will help other families to understand why legislation for Assisted Dying matters. 

Brendan’s story could be your story. We’re with Brendan.  Are you?

Before his death Brendan was invited to talk to Pat Kenny

You can hear Brendan’s interview on the Pat Kenny show here