'My mum's still alive, but the mum I knew is gone.'

I had my last conversation with my mum and didn't know it. I can’t even remember it. I remember one of the last conversations — proper conversations before she was slipping in and out — she asked me what I was thinking about doing after my PhD. What she was actually asking was what I am going to do with my life after she dies.

"I’m thinking a lot about moving overseas," I say. 

"I thought you might do that."

I don't know why she thought that — I've never had any desire to live abroad. Perhaps she realised that there's nothing here for me. Perhaps she thought that the emptiness that comes from having no family would be felt less if I was abroad. Maybe that's just what I think.

Mum's had cancer for a couple of years. She had a fall a couple of months ago; she had to go into hospital. I changed her sheets, so they were fresh when she'd come home. I didn't know she wasn't coming home. I washed away her smell. When she dies and I want to lie in her bed and in her sheets and smell all that is left of her I won't be able to because I washed it away. I just thought she would want fresh sheets.

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Mum's still alive. Well, her body is. But Mum is gone. Mostly. She has moments where I can see her. The attitude she only ever shows with me — the attitude that I love but that others would mistake as rude — that attitude still comes through at times. She can't really speak, but I can see flickers of it in her facial expressions and in her mannerisms. I know her well. I can sense her mood before she looks at me. Her moods aren't always pleasant. I love them anyway.

When my brother was alive, his manic pacing, and his inability to do anything quietly, his episodes through the night — I hated these things. When my brother died, I pined for the pacing, the silence was deafening, and my nights were empty. I couldn't sleep because the house was so quiet.

I also couldn't sleep because I didn't feel safe anymore. I'd never been conscious that just having Jared was integral to my fearlessness; it was only in his death — when I became timid, cautious, and frightened of harm — that I realised that I had lost more than my brother. It is a strange irony that we learn most about life through death.

Watch: Mother's Day can be a difficult time for some. Post continues after video.

Mum will die soon. It's taken so long yet now, suddenly it seems, it is happening so quickly. Last week she could walk, now she cannot hold a cup. Lifting her to the bathroom used to be a chore for me; now I just miss when she was well enough to be lifted anywhere. I wish I was able to hold her in my arms. She liked that I was strong — I made her feel safe. I liked that. When my mum was eventually forced into vulnerability, I was able to make her feel secure, the way my brother had done for me.

Mum gets very confused and this makes her scared. She likes it when I am there. It doesn't make her any less confused, but she knows that I will keep her safe. That means so much to me.

I'm sitting next to Mum now. It's midnight on Sunday. I have been working by her bedside. She's slept most of the day. I like being here. I like to feed her. She doesn't really eat anymore, but she eats when I feed her. I like that. At times, she rouses from her sleep startled. She's dreaming about my brother.

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Every morning she wakes up and has to remember that her son is dead. Heartbreaking is such an inadequate description.

I am going to leave soon, I hate leaving. The nurses will wish me goodnight and tell me to drive safely. When I walk out the door, I will burst into tears with a deep sense of fear that she might die while I am gone. This happens every day. I have a box of tissues in my car ready for me.

It is winter and the nights are cold. There will be frost on my windscreen and when I drive away and I turn through the roundabouts my car will make a strange noise. It makes it every night; I think it must be the cold.

I will drive through the roundabouts full of anxiety. I worry that she might wake up scared, looking for my brother and I won't be there to make her feel safe. I hate that she might wake up scared and that I am not there. I am so scared that she will die scared.

We're both scared.  

I will drive home and I will cry and I will wail. By the time I get to my door the neck of my sweater will be soaked from tears and I will be gasping. Once I get in the door, I will slide down against the wall and hope.

I don't know what I hope for.

I want, desperately, for my mum's suffering to end. I don't want her to wake up having to go through the grief of losing Jared anymore. I don't want her to have to live endless days unable to muster the strength to hold a cup. I know there's no going back; that she can't get better. I know what's coming.

But what I don't know is how I am going to live with the missing.

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Every time I do not know the answer to a basic question, I am going to miss Mum’s voice, exasperated, "What is it, exactly, that you have learnt in all of this time at university?" I tell her that I can't be expected to know answers to cultural questions — things about history or geography — I was raised in the Western suburbs! She looks at me unforgivingly. That look is reminding me that so was she: that she had to leave school at 15; she never had a university education. Mum never had the privileges I did but she still knows far more than I ever will. The look on her face is telling me to take responsibility for my own ignorance and to read a book (or an atlas). I know she is right. 

I don't know how it's going to feel to not see that look again.

The carers in Mum's nursing home look at me with sad eyes. They let me stay here. I don't know if I am meant to leave by a certain time, I intentionally never asked if there was visiting hours. No one else has visitors stay all night. But as long as I am here before the doors lock they don't care when, or if, I leave. They are kind. They ask me if I am her granddaughter; they think I am studying for high school exams. Maybe that's why they look at me so sadly, they think I am still a child.

I still am a child, her child — at least for tonight.

Postscript:

My mum died a month after I wrote this, which was now many years ago. And yet each time I come back to this piece I relive the tears and the pain. And in that pain I am reminded of the quote, 'Grief is the price we pay for love'. 

Kathryn Daley is a Senior Lecturer in Youth Work and Youth Studies at RMIT University, and is the co-theme leader of the Housing Insecurity and Homelessness research theme in the Social Equity Research Centre.

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