When my mother was dying, I began to paint, but only in shades of black and white. I’d barely picked up a pencil since I was a teenager, but one morning, in the middle of her illness, after another late night dash because she was confused from all the pills, I went to work, sat at my desk, started crying and couldn’t stop. I didn’t return for four months.
I don’t remember why I picked up a paintbrush, but during those months of my own recovery, I discovered I loved to paint. Although I’d always been good at art, writing was what I felt compelled to do. For years, it was a craving, always a story in my head or struggling onto the page. But during four long years of caring for my mother, words left me.
Our relationship was a complicated snare of love, guilt and resentment. She was an older mother, from a conservative generation of working class women who knew their place and kept up appearances of respectability at all costs. I was an only child, with no-one to share the weight of her expectations.
“Children are meant to be seen and not heard,” she would say, and I played the good girl so well that for years I was crippled with shyness. As a teenager, secretly, I reached beyond her boundaries; doing all the things she would have disapproved of had she known. Later, I was more openly different from what she expected: dressing like a punk, smoking, going to university, coming out. And yet, though I had the strength to be different, I still feared her disapproval and censored even the simplest things in my life to avoid it.
By the time her breast cancer returns, this time saturating her bones, we’ve reached an uneasy calm in our relationship. I am no longer the teenager who ran up the stairs crying that I hated her. Dad, the calm, accepting one, died some years earlier and I feel a duty to cultivate a grown-up, civil relationship. I have a partner that I love, a career and my own home. Mam and I have even graduated to saying ‘I love you’, since her confession that she never heard those words from Dad, but it feels so unfamiliar on my tongue that I’m rarely comfortable with it. There is still tension, but we have ways around it. My way is to avoid telling her anything that she might disapprove of, or telling her much of anything at all. Our phone calls – daily since Dad died – last only minutes.
There is no sibling to share the obligations of being the child of a terminally ill parent. At first, she is sick enough to be dying, but not sick enough for proper care. Although her doctor talks starkly of power of attorney and whether she wants to be resuscitated if she dies, Social Services talk of waiting lists and expect her to cope. It’s a time of never really knowing what to do, or who to go to for help. Though her own siblings support her in practical and emotional ways, and I have my own partner to support me, we’re all lost under a heavy sense of responsibility and desperation.
They think, at first, she’s damaged a nerve, causing her pain when walking. She transforms, over the period of a year, from an independent woman, always looking after someone else, to someone who hardly leaves the house. It’s only in hindsight that I realise how dramatic the transformation is. Only in hindsight, reading about secondary forms of breast cancer, that I realise someone should have suggested a scan sooner. Because how could any of us have known that a painful leg was the signal that the cancer had spread to her bones?
In the early part of her illness, sometimes she’s fine. I get used to travelling in hospital transport to endless appointments: checkups, scans, radiotherapy, blood transfusions. She walks with a stick at first, but by the end she’s in a wheelchair. I never become practised at manoeuvring her around, but, with some indignation, I do begin to realise how difficult the world is for wheelchair users. Everyone loves Mam, finding her sweet and amusing. She’s the darling of ambulance drivers and nurses. I find myself resentful of this, because they never see how demanding and disapproving she can be.
Looking after her becomes a long round of guilt. Guilt that I don’t visit enough, guilt that I don’t care enough, guilt about the things I don’t do for her, guilt about the things other people do for her, guilt that others might see me as a bad daughter. Visits and phone calls become a source of trepidation – how will she be? If she’s depressed or subdued I feel guilty. If she’s bright, I’m relieved. If she’s done nothing, seen nobody, I feel guilty. Sometimes, if she has had visitors I feel guilty that I wasn’t there. When she’s in hospital, I take only the occasional night off from visiting. And though she may have had a posse of visitors during the day, she complains of how long the evenings are when nobody visits, so that the guilt I feel for wanting an evening to myself is doubled.
Her bones are so fragile from the cancer that she begins breaking them: a collarbone; then a hip; then her other hip. Our life turns in circles: work, hospital, sleep; work, convalescent centre, sleep; work, struggling to care for her at home, sleep. There is barely time for a meal in between and no time for anything much else. Sometimes, I long to yell at her, to tell her how difficult it is for us, working full time and caring for her in between. She seems to swell with the attention, enjoying all of the visitors and casually distributing tasks. I remember the critical, flawed relationship she has hinted at with her own mother, when she was expected to look after others without any thought for herself. Perhaps finally she feels important in her own right and this is why she acts the way she does. If she would only acknowledge what we do to help her, but there’s no gratitude, only entitlement.
We become regulars at Accident and Emergency, either because of a broken bone or because she’s so confused or urgently unable to cope that it’s the only option open to us. But they don’t want her there. I have the impression they think we’re wasting their time; that she’s crying wolf because she doesn’t want to be at home. They don’t see how she struggles. She’s sent to a hospice and they send her home because she isn’t critical enough. A day later the doctor sends us back to A&E because she can’t walk. A&E tell me they think she wants to go back to the hospice because she prefers being there to being at home. They talk about a nursing home, but finally, she’s deemed ill enough to return to the hospice for good. I’m desperate for information, but feel as though nobody tells me anything significant. And being the good girl I’ve been trained to be, I probably don’t ask enough. What I really want is the impossible: for someone to tell me when she will die.
I have only one sliver of normality. My partner and I drive to the river, to a quiet spot we love. We drink coffee and talk and talk to the gentle sounds of the river and the boats tinkling in the marina. We watch passenger ferries and cargo ships passing through. These talks prepare me for everything from Mam’s death to her funeral. Emotionally and practically, it’s how I learn what to do. I’ve never been good at sharing my emotions. I keep everything deep inside, a legacy of avoiding my mother’s disapproval. But slowly, my partner draws it out. We live it before it happens and that’s how we deal with it.
There is a kind of peace at the end. Before the cancer seeps so deeply into her brain that she can only repeat the same phrases again and again and plead for God to let her die. She talks about her death with acceptance and asks forgiveness for the things she got wrong. And in the last days, I sit in her room in the evenings, my back to the window, and watch golden autumn sunsets shaft across the room, steeping the bed and my mother in a warm ochre light. The worst of the illness, and the worst of her, fades as I’m left in that room, sitting in the half-darkness with the stillness that amber light gives me.
And after she dies, I begin to paint in colour. My first colour painting is of the Northern Lights, a vibrant scene of light in the sky. It sits on the easel, waiting to be finished, as the funeral director visits to plan the funeral and the Vicar comes to discuss the service. I finish it as life returns to normal. I realise now that I started painting because my life was too full for words. Now the words are slowly coming back, but I have the painting as well. My partner says that, after all those years, we have to start learning to live again. The words and the pictures are part of that.
My mother died on 29 September 2010. I wrote this last year as a way of reconciling the experience of looking after her, our difficult relationship and ultimately, her death. I’ve decided to share this on what is the third anniversary of her death.