17 years ago

It’s been 17 years since I was woken up and told it’s time, it was happening, my mum was dying.

We knew it was close – I’d fallen asleep the night before hugging mum and was gently woken up in the early hours, almost peeled from her side and led to my sister’s old bedroom to get some rest.

After months of nursing mum from home we were almost zombies. And the wonderful Macmillan nurses came to help overnight, one of us needed to stay up with them to assist, and the others were encouraged to get some sort of rest so we could make the most of the time we had left with her.

But 7.01 on November 21, I was woken with a whisper and once again went to mum’s side. I heard those sounds that sadly have become more familiar with the passing of time, that tell you the end is nigh.

I remember later being angry that I’d been coaxed to bed instead of spending that whole last night with mum, but to be honest I was too tired to fight it and those few hours rest gave me enough strength to deal with everything that came next. And I guess I was still there at the end.

—

What happened next is a blur with moments of vividity.

I swore I could still see her chest moving like she was breathing but I was told she had gone. I stared for the longest time almost sure they were wrong but of course they were right. I knew it was coming and yet still had a hard time believing.

I remember my two younger brothers clinging to mum and hugging her for what felt like hours, maybe it was.

I remember making the worst phone call I’ll ever make to my sister from the bathroom to tell her the news.

I did a lot of things wrong in the next 24 hours, there were death protocols or old Irish Catholic traditions I just didn’t know about that are important to those I love, that no one tells you about until it’s too late. I inadvertently upset a bunch of people. I was angry, ungrateful and resentful. I’m sorry.

In the days that passed I somehow sleepwalked through the mountain of death admin and paperwork with the support of my aunties and grandma that I’ve since sadly become a pro at.

It was 10 days or so before the funeral which my mum had so meticulously stage managed in advance. She spoke about her wishes a lot and at the time I could barely bring myself to listen but I remain firmly thankful she had laid out the blueprint for us to follow it did make things easier to execute. We even managed to smile and laugh at certain moments during the worst of days.

I made a lot more mistakes in the interim too. Tried to somewhat ambitiously throw a 19th birthday party for my sister at a time no one much wanted to celebrate, take my boyfriend to the doctors and later the emergency department for surgery – I’m glad I didn’t fully realise was life threatening at the time. I went through those moments on autopilot, just getting stuff done that needed to be done.

My mum was just 42 when she died leaving the five of us aged 9-23 behind. 42 is no age at all and with every passing year I realise quite how young that really is, or how old I’m getting.

She made 4 last trips to Antigua a place that was filled with family and she adored. It was there we assembled to scatter her ashes, under a tree in my uncle’s house.

Earlier this year I got to spend a good amount of time there by that tree talking to mum letting her know how much she has impacted us all and telling her about the grandchildren she never got to meet.

—

My mum had fought, yes absolutely fought to stay with us for as long as she possibly could. Her body had long given up the fight and was cursing her at every turn. It took me a long time afterwards before the mum I could see in my dreams wasn’t the one that the cancer and treatment had ravaged beyond almost any recognition.

A few days previous, after a rough few nights she realised her body just would not make Christmas and asked for permission to stop fighting. Watching the pain she was in, that I fought with the doctors to relieve calling them back out again almost hourly, I knew she deserved more peace than this.

I remember a doctor I’d called out for the third time one night saying they couldn’t give any more pain relief or it may kill her and being bewildered that this was still a consideration, she was dying for fucks sake just make it stop.

I’d never really thought about euthanasia before that day, I’m now quite fixed on my views – no animal is left to suffer like this I don’t understand why humans are.

Sorry this is a lot more graphic than I had planned to write and yet I am still holding back unable to articulate fully or commit in writing everything that happened, as if by not writing it down it will one day not be real, the passage of time will soften the memory of just how rough it was – the ugly brutal side of dying.

Of course I had nothing to compare it to back then but I knew it was horrific and a part of me realised it surely doesn’t have to be this way for everyone. This couldn’t be the way we let our loved ones leave the world in the 21st Century, there must be a kinder way.

—

I’ve only told one person anywhere near the full details of what happens at the end and I regretted it as soon as I did. One of the few friends from my University life in Brighton that kept in touch when I went home to look after mum and checked in with me during the wee hours when I had become nocturnal doing the night care shift. His mum was diagnosed with cancer a few years later, the prognosis was terminal and he asked for the full unfiltered truth of what was to come.

While caveating with everything is different for everyone, I detailed starkly the brutality of cancer treatment, how the biggest pain was not the terrifying results but the waiting for them, the not knowing if any of it was working or worth it. That even when you get the worst news there is a relief in it as then you know what you’re dealing with, the hope while waiting for that news is excruciating – when the worst news comes you can at least plan. The horrors of those last few days, the force and determination you need to show to access the highest pain meds possible to stop the screaming.

It makes me sad now to look at the notebooks where I helped plan out the weekly finances, I wish she didn’t have to worry about the £20 for this and that when facing the end of days.

I regretted laying all that bare. No one should really have to know those things. And thankfully his mum’s experience was much gentler – although he did later thank me for preparing him for the worst.

—

This was my first experience with death in any real sense up close at least. I’ve since learnt people don’t have to die like that – it doesn’t have to be that brutal. Some people can just peacefully slip away like we’re told about. Some people get the pain relief they deserve without having to fight for it.

End of life care is so hit and miss. No one feels equipped to deal with it.

We had a long goodbye with mum and for the most part I’m extremely grateful we did and had chance to slowly attempt to process what was happening. What we were about to lose. And have the opportunity to build new memories.

I remember chatting to my mum at a pub in Brighton a few years previously where she quizzed me on what I could remember when I was 7 or so. She was terrified her boys would not remember her, they were so young! She thankfully had a few more years with us and them and time to build some memories we won’t let them forget.

My brother Yusuf has started a new family tradition which I love, where we will go out for dinner on Mum’s death day just us 5 siblings and chat and reminisce. The first time we all were organised or felt strong enough to do that was 2 years ago, and Covid has stuffed all chance of us doing it this year. But next year let anything stop me gathering with my siblings and telling stories to keep mum’s memory alive.

The nice part about days like today is that we talk, I get to see pictures of my mum I’ve maybe not seen before that friends and family post. And hear some anecdotes of other people’s memories of my mum. The one that truly made me smile today was from an old family friend we used to holiday with as kids, ‘No one could read a story to children like Aunty Wendy!’ That’s so true, she was ace as reading stories and even wrote a few in her time!