When it is time to say goodbye

And because he was a strident atheist, from an Irish Catholic family, spiritual guidance was not something he sought. So, nor did we.

When my Jewish grandparents died, their rabbi, was on hand to deal with questions and concerns. Here we didn’t have a rabbi or a priest.

But we had Justin, and he was a giant, not what I had expected a Marie Curie nurse, sent to look after a dying man or comfort a family, to look like. He was 6ft tall with broad shoulders, but his soothing voice and warm presence was as soft and comforting as a rabbi carrying out the pastoral care we all desperately needed.

Tears trickled down my face as I clutched my dad’s hand. His skin folded beneath my far fleshier palm.

I held his hand for weeks, watching the slow deterioration of the strong man I knew, as cancer took a bit more of him each day.

Justin was our guide, a reminder of the practical. He told us: “When it happens, call the doctor. You don’t need to call the funeral home until you’re ready. When you’re ready, they will come.
“Let him know he does not need to hang on,” he added. “It helps.”

At this point a small coach load of family had gathered round my dad’s bedside, convinced this was going to be the night he went.

My dad could no longer speak. His breathing became laboured and erratic, and a panicked anxiety took over all of us.

We watched and waited, but it wasn’t the dramatic ending we had predicted. He wasn’t ready to go yet —my dad was always stubborn.

“People tend to wait for a quiet time, having loads of people around isn’t always best, he might like a bit of privacy,” said Justin, at 4am, as a relative counted my dad’s faint pulse out loud.

“He might be hanging on because he is worried that you’re not going to be ok, tell him you’re going to be ok, tell him he doesn’t have to worry and he can go.”

I thought about those words and I wanted to say them. I wanted to do anything that might help him leave in peace.

So, I tried to get those words out, many times in the final weeks. I wanted to say it was going to be “ok.”

I fought against my own throat as it tensed and a slow ache took over and I held back tears so hard that I gave myself a headache.

I tried to imagine saying it. “It’s going to be okay, Dad.” But I could not say it out loud.

I watched others follow Justin’s advice. “We will be fine, we will look after each other. Don’t worry.”

It has been three months since the visitors left my mum, sister and me, alone with my dad for the first time in weeks.

The door wasn’t going, the phone wasn’t ringing. We were still and I sat holding his hand, while my mum was in the corner playing solitaire on her iPad. It was the quiet, peace and privacy, Justin had told us about.

It must have been instinct that made me look up to see my dad take one last deep breath, I watched his chest rise and deflate with a sigh, and then he was still.

Profound grief, like losing a parent in your twenties is something we get very little rehearsal for.

And before you get to the grief, you have to be practical. You have to call the doctor, get a death certificate, call the funeral home.

You have to get into a queue at your local council and fill in a form to register the death. You have to find the paper work, cancel Sky Sports and renew the car tax.

The real grief has barely started by the time the funeral is over. And while there would be a set of rituals to observe if the grief was happening on the other side of my culture, this time I do nothing but wait.

But grief comes when you’re back at work and those who gathered round in those first days and weeks have got on with their lives.

It comes on a Sunday when dad is not there in the kitchen making a roast dinner. Or when you’re driving home from work and you haven’t thought about him for the day. Then it hits you, guilt.

I’ve thought about Justin every day since then and unique gift he gave me and my family in those final days.

As the government announces a four-year plan to overhaul end- of- life-care amid concerns that patients are being let down in their final hours. I am grateful that our experience as a family was quite the opposite and that Justin was there to help us.

I've thought about how as someone from a mix faith background, where spiritual leaders are used to guide communities through grief, a palliative care nurse took their place.

And as I navigate my own grief despite never feeling prepared for it, I tell myself what Justin told me.

He guided us through death as it took hold of my family and he made sure we didn’t face it alone.

He taught me to trust my intuition, and reminded me of the importance of giving someone space.

Space to deal with the practicalities of life (and death), space to grieve, and — when it is the right time — space to go.