WHAT NIGHTMARES MAY COME

Early last year, a police officer called me on my mobile phone before introducing himself as part of the Covid deaths investigation team. He asked me how I was feeling. My shock at receiving this call, mid-afternoon, mid-week and mid my third attempt to reinstall Teams before a meeting, led to a direct answer: ‘I’m actually getting counselling. Therapy. For the trauma.’

I had first accessed therapy two years earlier, when six months deep in an ocean of health and social care incompetence as the system barraged my mother. At that point, my mum was living in her own home, albeit with a squatter: a Covid-induced delirium which trailed her like a malevolent malingerer. It had formed a dangerous alliance with her Parkinson’s-related dementia, adding depth to a haze within which her speech became an abstraction. As verbal dead ends were sat in, I waved into the rear view of her consciousness, a familiar face that she had guided for fifty years, reciprocating the communicative signposts which she had laid out for me. As I increasingly passed directions and prompts her way, a fear began to grow: where would this journey end?

The only positive was that mum was in her own home. That sentence feels bare without the word ‘safe’. Her support package of one carer twice a day, had been assessed as needing to be quadrupled. Knowing the social care ‘crisis’ to be more of an apocalypse, I understood that I would have more success catching a unicorn and also, that if I failed to discover the magical bait in time, mum would have to move to a nursing home. As her advocate, I absorbed the stress of a tenant awaiting eviction: each day undisturbed by officials was a reprieve.

I was also in my own home: twenty-plus years of chronic illness prescribed a fluctuating social life, with the threat of Covid imposing another shield with which to armour my immune system. Former social obstacles proved impassable, and as human connection became a flourishing marketplace, Mum and I stayed grounded via an old-fashioned wire: the telephone which had long been our aid, became our salvation.

I had become fused to my phone: lobbying a succession of social workers, community nurses, GPs, homecare companies, patient advisory groups, the local MP, MSP and councillor as I fought for her right to remain supported in her own home. The response was always another cover version of an old song composed of bureaucratic naysaying. After speaking louder on her behalf, I was given a twenty-eight-day armistice to either source a homecare package, or find nursing home accommodation. By day twenty-six, a ticking clock, ever louder in my ears, forced me to discuss with mum the necessity of respite care until I could secure a homecare package.

Desperate to soften the blow, I reassured her that it was a care home, not a prison. Her environment may change, but her relationships would not. Yet, as a respite resident, mum wasn’t entitled to a landline. We were twelve months in to the Covid pandemic at this point, and restrictions included mum isolating in a room for fourteen days upon admission. It was insupportable that she would not have access to my voice, my words, to reassure and comfort. So, I pushed, and on day twenty-six, the manager pulled the offer of a room. As the option of a care home fell apart, so did I.

The following day, with my mum’s bags packed, and nowhere to go, I received a call from social work to say that we had, remarkably, been offered a home care package. I celebrated by breathing out. As mum’s friends remarked on how lucky she was to have a daughter like me, my mind reviewed my therapist’s perspective: ‘Your mum is safe, for now. But at what cost to you?’

In order to move forward, I had to look back to what had brought me here. Love, yes. Compassion, of course. But the concern from my own daughter and friends, who understood how debilitating my own illness was, reverberated daily in my ears. As did my inner voice, reminding my conscious self of the promise that I had made, after years of therapy, that I would stop trying to rescue my mum.

There is a recurring theme to our family story of addiction and abuse, submission and acceptance. My dad, a decade dead, appeared reincarnated in my brother, although he did not need alcohol to rage. He exploded at the flick of a switch whenever the PTSD he carried within manifested. He had been diagnosed by a medic who recognised the horrors of war that he had participated in as a teenager. However, his childhood trauma remained a family secret between us four. As a witness to the physical abuse my father perpetrated against him, I understood his escape in to the army, but questioned his disregard at leaving me alone, on the battlefield we called home. I was fully trained in protecting my mum, in pleading with her to leave, or at least to seek refuge in one of the women’s hostels that I had become aware of by the age of thirteen. She always refused to stir. Even when I stood between her and my father as my father roared that if I did not get her to move, and to move now, he would kill her, she stayed. And so, by proxy, did I.

Eventually, I was swept away by love. For a man who presented as the complete opposite of my dad. In time, his tendencies to coerce and control revealed themselves as simply a more solicitous form of abuse. A cycle was revealed through therapy, offering insight when my brother perpetuated an abuse against me, and my mum submitted to him. Her failure to place herself in the middle of familial conflict and act as referee, as I had done as a child, finally enabled me to draw a boundary.

This perimeter of self- protection, chronic illness on either side and a pandemic all around, stacked so much against mum and I, yet our bond remained untethered. Out of the many people who saw mum in person, it had been I, on the other side of a phone, who had noticed her cognitive decline. It was I who she continued to confide in: that she had forgotten, frozen, fallen.

One night, she fell hard, and so did all of my boundaries. Unable to extricate love from instinct, confused as to how I should protect myself while keeping her safe, I let my therapist tally up the psychological cost, as I consented to the idea that yes, I was undoing a lot of good work on myself.

By the following Spring, after mum suffered another fall, a subsequent disastrous nine weeks in hospital, hospital-acquired Covid, and a further cognitive and physical decline, going home was no longer an option.

I returned to weekly therapy sessions, seeking a virtual room in cyberspace to offload my painfully real, earthly despair. Institutional attitudes and barriers had grown up and around my mum and I like vines. If I cut back one, another grew in its place. I began to recall a film I’d watched many years previously: When Dreams May Come (1998). The title is derived from Shakespeare's ‘Hamlet’ (Act 3, Scene 1): ‘To sleep: perchance to dream: ay, there's the rub; For in that sleep of death what dreams May come When we have shuffled off this mortal coil must give us pause...’ Hamlet’s soliloquy, meditating on the afterlife, is reflected in the films’ narrative which centres the devastation of paediatrician Chris Nielsen (Robin Williams) and his artist wife, Annie Collins (Annabella Sciorra) after their two children die in a road traffic accident. Four years later, Chris is also killed in a car crash. He is unaware that he is dead and watches on in confusion as Annie grieves. Annie completes suicide yet goes to hell, realising a horror as perceived by Hamlet who attends to the Christian belief that suicide is a crime against God deserving of eternal punishment. Hamlet’s faith thus pushes him to dispel suicidal ideation and battle his earthly foes. Within When Dreams May Come, an individual’s afterlife is portrayed as the realisation of personal pain, a cruel fate which incites Chris’s resolve to rescue Annie. Upon reaching hell, he is informed by his celestial guide that he has minutes to say a final goodbye before he too will be trapped. Chris chooses to stay with Annie, in a horrific version of their old house. This act of love and self-sacrifice is revealed as a test and they ascend to heaven.

My mum’s idea of hell was being a resident of a nursing home. It was her own house of horrors, made all the more dreadful by their lockdown policy. As I psyched myself up to join her there via an iPad, I envisaged myself as Robin Williams’ character: tiptoeing passed the ghouls and ghosts, the spiders and webs, as I willed myself forward. Far enough, deep enough, dark enough until I was able to connect with mum. I am here. You are not alone.

The absoluteness of isolation is familiar to me: having been mostly housebound for twenty years and shielding from Covid since the pandemic was sanctioned. But I had my mind, I told my therapist, my mind’s eye. My Wordsworth’s inward eye, which ‘is the bliss of solitude.’ Yet how did I know where mum’s mind and imagination were? I held on to Sartre’s three orders of the body: ‘the ways in which my body exceeds the first two orders (objective and subjective) and enters the third social order, are the ways in which my body ‘escapes me on all sides and returns to me as gazed upon by others.’ I know this to be true from my own experience. On the rare days when my body enables an outing, facilitated by either my wheelchair or mobility scooter, I am thrilled. But when someone walks by, and I catch their prejudicial gaze: pity, sadness, embarrassment or a combination of all, my own experience is shaken and the shine rubbed off the day. I’ve watched on as strangers mime placing a gun to their head and pulling the trigger while stating that if they were me - Bang! Bang! They’d rather be dead. I wonder at what point I internalised these aggressions, to the degree that I began to make the same ableist assumptions about my mum.

The smoke and mirrors that dementia plays on the onlooker are real: there was no doubt in my mind that all that my mum was as a person was still there. I recognised her from her mannerisms, facial expressions and other non-verbal cues. Her words were as rare and precious as gemstones. When they were offered, I accepted with gratitude, polishing them until they caught the light and twinkled their meaning. But when I asked ‘How are you?’ and she replied ‘fine’, I couldn’t trust that word. She had been ‘fine’ throughout her abusive marriage.

We were also trapped in a greater lie: as political leaders pontificated from their lecterns one last time to ‘throw your mask away, don’t even bother isolating if you test positive’, those hidden within hospital or care homes remained in lockdown. I can’t say it jarred, as that doesn’t begin to convey the dismay of being reminded that the world doesn’t give a shit about disabled people. As music stars screamed down a microphone and sixty thousand fans roared back, and footballers struck a ball in to the back of a net before a stadium at full capacity sung in chorus to celebrate, my mum was incarcerated in a room 24/7. We were indeed in hell, with a side door to a parallel universe.

I became irritated when people described either the weather or being stuck in traffic as ‘a nightmare.’ I had learned what a waking nightmare was. Mum wasn’t eating or drinking and had become very, very quiet. I coaxed her back from her inner world with open questions and readings. Gathering passages from her favourite books, poetry and magazines became my other occupation. After thirty or forty minutes of my reading aloud, mum would speak: proof that losing her communication skills was a consequence of being isolated. I would have liked to have raised this with the staff, but was aware they didn’t have the time to answer a further phone call, let alone discuss my concerns.

I became relieved when the staff dodged out of the room and I could focus on mum. As her mind buffered behind a screen of confusion, I monitored her face intently, awaiting movement around her mouth as she began to form words, before assisting her to birth them. I watched her eyes light up as I recited the names of those she knew before they dulled again when I explained why they were unable to visit.

Her only visitors were other residents who had briefly absconded from their own cells. Janet would regularly wander in to mum’s room while we were on the iPad. She heard my questions for mum and claimed them as her own. Rita called out repeatedly for John, until she was drowned out by the strains of Frank Sinatra or Cher.

‘You like Cher, don’t you?’ The exasperated tone of a carer’s voice echoed through the paper-thin walls. ‘Here’s Frank, let’s dance.’

But mum didn’t like Frank or Cher, and their reflections of having done it all “My Way” or wish to “Turn Back Time” snuffed out any precious words that she had to offer. I didn’t add this to my grievances: not wishing to deny Rita or Janet whatever was therapeutic to them. Yet on the day mum died, I nursed an anxiety that her last minutes would be assaulted by Frank or Cher. My thoughts returned to When Dreams May Come, envious of Robin Williams and Annabella Scirroa who had the benefit of a classically-scored Michael Kamen soundtrack to accompany them into the abyss.

Seven days before my mum’s death, I arrived on FaceTime to see her dressed in someone else’s clothes and with medication oozing from her mouth. I politely challenged the carer who checked the label sewn in to mum’s clothes. They were in fact not hers, she confirmed with an apology. Only I saw the twitch of discomfort across mum’s shoulders as she tried to shake off the invasion of a stranger’s hand which had reached down her neck to check her name tag. The medication was of an ochre colour which stains the skin like betadine. It pained me that she had the fingertips of a life-long chain smoker when she’d never taken a drag. This latest visual assault proved too much and I burst in to tears.

By this point, I was Face Timing several times a day, with my daughter joining the second call to give mum a much-needed change of conversation. When the first one ended, I asked the staff to ensure that my mum would be dressed in her own clothes by the second.
I left the call with an instinct to give my mum a tablet which would end her suffering. This feeling, the ineffable images, led me to tell my own daughter that if this ever happens to me, I want to be euthanised. This makes me a hypocrite: forcing a deep schism in my core belief about the meaning and value of my own life. I don’t doubt the value for an instant. But I have a realistic fear of the future and I know that, at this point in mum’s journey, she was choosing to leave. Not because of her Parkinson’s, her arthritis, her pelvic fracture or dementia, but because she was isolated in a room, without her dentures, wearing someone else’s clothes and listening to Rita calling for John before her pleas for release were overruled by Frank Sinatra.

Mum stopped eating and began to sleep more and more. I told the staff that I’d stay on FaceTime regardless - there was something soothing in watching her sleep, in wishing her sweeter dreams than the bitter reality. I wondered what dreams may come for her. Perhaps she would be transported back to her nursing days; to a busy nightshift on the spinal injuries unit which she ran so brilliantly. How often I have wished that my mum had been cared for by my mum: a calm, respectful presence who knew that to be unwell or in an unfamiliar environment is a daunting experience and that all anyone really needs at that time is the empathy of another human being.

I did what I could until the end, which, despite the agony of the waiting, was all too soon and still so shocking. The subsequent nightmares are damming. Nothing helps. The little girl who was responsible for her mum’s safety cannot accept that she has failed so spectacularly that, this time, her mum has left.

One year later, I share a different recollection with the police officer: information which may be useful to an investigation or inquiry. He tells me that my testimony will be passed to the Covid Deaths Investigation Team and I will receive a letter from victim support. I’m astonished to learn that someone, somewhere, recognises what has happened as a crime. He compliments me for engaging in therapy before sharing that it is refreshing to hear from someone who is taking care of themselves. I don’t tell him that this is what I’m used to: I have a contested illness, I am the child of an alcoholic in denial and a family in shame, a former wife who was abandoned when she became disabled and a Scottish Protestant who was schooled that silent pain is the worthiest.

When the police officer completed his notes, I laid down my phone, hoping again that my mum had reunited with her beloved sister in the afterlife and managed to avoid my dad. I imagined myself stepping out of the space that had always existed between my parents, and made a fresh promise to guard myself.

Works Cited

Cher. “If I Could Turn Back Time.” Heart of Stone. Geffen, 1989. Track number
Kamen, Michael. “What Dreams May Come (Original Motion Picture Soundtrack)”. Decca, 1998.
Sartre, Jean-Paul. Being and Nothingness. London and New York: Routledge, 2003 [1943]. Pp. 375.
Shakespeare, William. Hamlet. Edited by George Richard Hibbard, Oxford UP, 2008.
Sinatra, Frank. “My Way.” My Way. Reprise, 1969.
What Dreams May Come. Directed by Vincent Ward, Polygram Filmed Entertainment, 1998
Wordsworth, William, “I Wandered Lonely as a Cloud”, Poetry.com. STANDS4 LLC, 2023. Web. 23 Aug. 2023. https;//www.poetry.com/poem/42226/i-wandered-lonely-as-a-cloud [Accessed 3rd February, 2024]

Arlene Jackson is a postgraduate researcher at the department of English and Creative Writing at Manchester Metropolitan University. As a former nurse who presently lives with chronic illness, Arlene utilises her perspective from the other side of the medical fence to analyse and critique literary and scholarly representations of illness and disability. Her current project seeks to explore the meaning and value of fiction on audio format to individuals living with sensory impairments. She has published both critically and creatively, most recently in The Polyphony and Synapsis.