‘I’ve found Mama,’ my son had said. Neither of my children had ever called her Gran, Nan, Nana. Walking towards me with what looked like a piece of fluff betwixt his finger and his thumb, he was smiling about his find. I looked up at him, quizzically, wondering what he was suggesting. We hadn’t seen mum now for a year and a half, and we had just moved house. There were unlikely to be any signs of her in the new place: she had never been there. ‘She’s in the chair,’ he’d said, ‘Look.’ He opened out the palm of his hands to show me what he’d been holding on to tightly between his fingers. There were some short almost imperceptible strands of blondey white hair. ‘It’s her, isn’t it?’ he asked. It really could be, I thought, but more likely some sort of fibrous material escaped from the cushions. ‘Where were they?’ I asked, not wanting to disappoint him. It was as if he were delivering a present. ‘In the green chair, her chair, the one she always sat on’ – which she did – ‘in the corner of the room, when she came on Wednesdays’ – which she also did – ‘and…’. He was almost breathless, some confirmation perhaps that she was still alive, which in many ways of course (in our minds, in our memories, in our own behaviours), she was. ‘Come with me,’ he’d said, and we entered the lounge walking over to the very chair. He pointed to a spot where the velvet material bunched up under the wood frame, and pointed to a few more strands of hair. We both agreed it must be her, and we both wanted this to be the case.
‘I used to think that whenever we went to Dada’s house, Mama was playing hide and seek from us and that she’d be back one day to surprise us all,’ he went on. ‘I miss her, Mum.’ We had a long conversation about what he missed in her, which mainly boiled down to her huge squishy cuddles, the way she thought about them both, showered them with pressies and how she laughed; that deep, powerful belly laugh that echoed in a room. He’d decided early on that he’d take her place with cuddles, and has maintained this, perhaps cuddling himself at the same time whenever he thinks of her.
Mum had died of a glioblastoma multiforme on 2 May 2019, having been diagnosed in January of that year following a frightening seizure on Boxing Day where she’d sensed a sort of electric current running through her body. And that morning, all speech had vanished; she’d been petrified. She cried out bewildering and fearful sounds, like a trapped animal in her own bodily cavern. My father had called an ambulance, thinking this was a stroke, from which she’d recover. What followed were stays in hospital, biopsies to the brain, investigations of glial cells, a half-finished round of chemo, palliative radiotherapy until further seizures pushed through the steroids, keeping the tumour at bay, to leave her bedbound in the downstairs room that had once, many years before, been converted for her own unwell mother.
In ‘A Funny Feeling’ (Feb, 2021), David Runciman writes beautifully of Philip Larkin’s ongoing and at times paralysing death anxiety. In the final sentences he turns to his own father’s recent death of a fatal heart condition, following the survival of covid. He writes of his death:
I was deeply struck by a feeling that the step from the half-life my father had been leading to no life at all was less significant than the earlier step from his full life to his bedbound one.
This sentence captures so beautifully my own experience of my mother’s death, which has left a sense of a gentle ending fitting for a lively loving soul. It was all her energy – caring, ferocious, unbounded at times – evaporated, becoming part of the timeless expanse of existence. She had not feared death, and generously encouraged us all to go on living. The last thing she said to me clearly in among uncharacteristically unformed words, some kind of injunction towards continued care, to life, to becoming, was, ‘Go to your babies.’ Babies, we might imagine, are the perfect prototype or paradigm of an object of responsibility: though my children were at the time 7 and 10, my mother was seemingly taking her responsibility as a mother and a grandmother seriously to the very end. And despite her desire to go on initially, once she had lost her capacity for language use, becoming locked inside a mind in disintegration and physically bedbound, she allowed herself a parting, decided, it seemed, to stop eating and to welcome death in.
Writing for me has kept her alive, has given me place and space and words to revisit and reshape and revise my grief. In language – which she desperately tried to hold on to, as a teacher of English and lover of poetry and dramatic script – I have been able to chart its movement, the intensity and fears of anticipatory grief, the compulsion to hold on to her for as long as was humanly possible, the feeding, the hot chocolates, the blankets, as if all those small acts of care would maintain life. I have seen the tears of grief drop from my eyes as I’ve typed, the physical sickness of a full stomach but empty with a heavy sense of absence, the way grief interrupts a day or a moment and takes us to a beforetime or a wished-for time that never came.
And I see grief in the expressions of my children, who sometimes slow down enough to notice the mark Mum has left on them. As we strolled by the river my daughter, now 12, told me for the first time that sometimes she reflects on the moment – that Christmas day before the tumour erupted – she told her Mama that she looked a bit plump. It was a jokey comment, one which Mama tended to bat away since she was well aware that she carried extra pounds. Now, though, my daughter worries that she’d said something that precipitated the crisis, that a bad thing came from her cheek, that this was the last thing Mama would have remembered of her before her brain became a more wobbly, shaky mass. That children attack themselves with the what ifs and the whys, as adults do, the magical belief that a thought or a phrase can damage or cause death. For some time we talked about her relationship with Mum, and how it had shifted over time, how close they had been – a certain affinity between them, actresses both at times – and how she’d wrapped Mama in fleece blankets intermittently throughout the journey of her brain cancer. That any slight ambivalence of feeling towards another human being, whether it be partner, parent, or grandparent is part of the very fabric of the relational field; we are none of us saints. At eight I had similarly told my grandfather – dying of prostrate cancer, though I was barely cognisant of it – to eat all of his peas, implying that only naughty people leave their vegetables. I never saw him again, and I was left with a sense that my rudeness had done bad things to him.
As I think of the children, almost eighteen months on, trying to process their own feeling, it is hard not to bring to mind all the people living with life-limiting conditions and their families, with whom I have worked; to reflect upon the pain, suffering, the fear – collective and individual. Death can wreak havoc on family systems, which once felt intact and certain of who they were. Roles may change, the person historically charged with the greater burden of responsibility may have to hand this over to another member of the family, which invariably comes with the tensions of adjustments – a learning to be open to see someone in a different light and to take back the projections which invariably have held someone in place. A dying parent may exacerbate for children – in this case, adult siblings – earlier and historic rivalries, a desire to offer up or take away as much attention as possible before it is too late; some will seek the proximity afforded to them via the caring role, driving a parent back and forth from appointments, and others will find a different possibility – fundraising, events – or even disappear altogether, the final separation anxiety too great.
Being visited by a terminal illness can, however, also, compel people to seize the day and to begin living in a way that is unfamiliar to them and also liberating. People who have kept their feelings to themselves embark tentatively on finding ways to greater self-expression, to begin to articulate their concerns and to avoid turning inwards; to share their love and gratitude and also care. Often, while simultaneously perhaps angry and saddened by the sense of injustice of having become so riddled with illness, many people also suggest that without this experience of greater dependency there would never have been the chance to realise and to experience the kindnesses of other people.
In palliative psychotherapy, we leave our work each day with an inordinate sense of privilege. Each session – as any psychotherapy meeting will be – is framed by a beginning and an ending. In the end-of-life context, though, time takes on a greater sense of meaning and profundity. Each word, each contact, each look, these could all be very final when working with someone who is dying; and often we might be trusted as the keeper of a story – some barely, if at all, told. A therapeutic relationship such as this has an impact on both parties: sometimes in the process of reconstructing the story of a life before the end there is an internal reshaping for the client and an ongoing sense of having been touched in the most human and humane of ways for the therapist.
In grief, too, as I have been and my children also, there is a reshaping – what can be described in its most simplest form as an experience of living with a tension always of joy and pain; acutely aware of how we effect one another, of how sometimes the lens through which we see one another can be marginally or dramatically distorted. In grief, somehow, many bereaved people reverse and go backwards, noticing intricate details of who and how someone was – sometimes we will find a disconnect between our assumptions and what we now see – and we take this learning into the present and see a future in which perhaps we are more conscious than ever before of what belongs to us and what belongs to another. We see the patchwork of colour in each unique individual, imperfect and messy and alive; and with effort and possibly professional support we try further to integrate all the anomalies in ourselves so that our capacity for understanding and empathising becomes further honed. We reclaim– if we are lucky - the parts of us that got mixed up and located in the dead and so we keep them very much close and full of aliveness in our minds and in our bodies.
And perhaps we find their hairs on the living room chair, and we sense the tears yet also the utter appreciation that someone touched the very being of us – as we hopefully touched theirs.
As Marie de Hennezel notes so beautifully and tenderly in her incredible book, Intimate Death, about her work as a psychologist in a Parisian hospice:
‘[N]o human being can be reduced to what we see, or think we see. Any person is infinitely larger, and deeper, than our narrow judgements can discern… He or she can never be considered to have uttered the final word on anything, is always developing, always has the power of self-fulfillment, and a capacity for self-transformation through all the crises and trials of life.’ (p. 19)
Working with and living alongside someone who is dying pushes us perhaps to get closer to the depth of a person, to enjoy of course the moments of light – doing the crossword together as my parents did before that became impossibly hard; giggling at a quiz show; spraying a favourite perfume as the hospice at home team continued to do for Mum only days before she died – but generally to move away from surface preoccupations and into the heart of each day.
Esther Ramsay-Jones, February 2021