I vaguely remember being at the hospice, it was a warm May evening, and I was visiting after school. I had just completed my AS level art exam and I clutched a picture of my art in the sweaty palm of my hand with the hope that I would show it to my mum.. I never did.
I remember standing awkwardly at the door of her room, silently observing my father and brother sitting beside her bed as she slept. I remember not fully wanting to enter the space, as that meant some sort of acknowledgment of the situation.
I can’t recall what happened next, all I remember is going to leave, and my family taking it in turns to say goodbye. I sat close to my mum and began to speak, I don’t know what I said, but I was aware that my mum was barely conscious, her head hung heavily to the side, a lilac woolly hat covered her bald head and she lay in her marooned coloured pyjamas. I got up to leave, when my mum drifted from her medicated sleep and glanced around the room before muttering ‘Where’s Jack?’ My brother peeked out from behind my father and mumbled something. I began to speak but she didn’t acknowledge me, a minute later her tired hazel eyes turned to mine, there was a blank stare.. A pause, before she huskily whispered ‘Who are you?’
For a moment I froze… time stopped. It began to dawn on me that she didn’t know who I was… She knew who my brother was but not me. Everyone in the room stood there in silence. No one tried to intervene, to explain that I was her daughter. I just stood there, blood ran to my head as my face went red with embarrassment, before pain ran through my body like a bullet to the heart.
My mum remembered my brother but she didn’t know who I was……I was invisible to her for that moment in time.
I don’t know what exactly happened next but I remember running out the room, and running down the dingy corridor and out into the fresh air. Adrenalin pumping through my body as I went into fight or flight mode… I chose flight. I couldn’t bear to witness this anymore, so I left and I didn’t go back.
That was the last time I saw my mum, I refused to go and see her again and she died the next day.
This was a memory that seeped into my body just as it did my mind and became stuck, the sensations that my body held onto haunted me for a decade, and I was constantly trying to bury them within my knapsack. For years after, I battled with the thought that my mum didn’t love me as much as she loved my brother, I was ashamed that she remembered him and not me. It cemented the sibling rivalry that my mum preferred my brother, and I was just invisible to her.
Only now do I understand a pinch more about the process of dying and the physical process of death. I have come to turns with the fact that for various different reasons some people can experience delirium in the last 24-48 hours of their life, and hence possibly why my mum did not know who I was…it wasn’t because she loved my brother more than me.
I look back now and wish I had been given this knowledge back then, been informed and had an understanding of what the dying process might look, smell and sound like..
This information could be so vital to families and I really advocate for charities and support services to offer to inform both the dying and their families of this process. I was kept out of so many conversations by professionals, I was seen as a child that needed to be protected but in fact I need to be spoken to, to be seen, to be heard and have someone on my side informing and empowering me.
No wonder I still struggle with goodbyes now….