“I wish she were dead”
Joy had spent most of her life trying to avoid thinking about death or dying, or anything to do with it, so wishing her own mother was dead was even more unwelcome and intrusive a line of thought than it ought to be. Repelled by anything to do with death, she had tried for the last 40 years to focus her efforts and attention on the living.
Her mother, like her grandmother, her aunt and, she increasingly suspected, her sister, had Alzheimer’s dementia. A few years ago her mother had been found hanging happily upside down from her seat-belt in her upturned mini in the middle of Peterborough. She had written off several cars and smashed the front of Top Shop. It was a wonder no-one, including her, had been killed, but at 4.30am on a Wednesday morning there fortunately weren’t many people about. Her family knew she was getting forgetful, but she seemed cheerful enough and was fiercely and doggedly determined to hang on to her independence. In the months before ‘the crash’ her car had become progressively dented as her driving became more and more erratic. A few family arguments had been simmering in that time. Joy had defended her mother’s right to independence and quality of life, whilst her sister pleaded for the safety of other road users, street furniture and pavement dwellers. Joy fought for her mother’s right to drive to the end, on the grounds that no-one had actually been hurt, whilst her sister pointed out that it was absurd to wait for a calamity. After ‘the crash’, their mother was taken to hospital where she was judged to be suffering from dementia and her car, to the family’s relief, was judged to be a write-off. Their mother never fully understood why she shouldn’t be allowed to drive again and became isolated and depressed in spite, or perhaps because of her family rallying around. The car had been her means of escape.
This afternoon, 4 years after ‘the crash’, Joy had been to visit her mother for lunch. It wasn’t one of the better days for either of them. Usually, at this time of day, Joy is less stressed, and her mother less agitated than in the mornings. In the evenings Joy is frequently as exhausted as her mother is psychotically paranoid; a little, but more than enough.
Her mother was sitting in her rocking chair looking out of the window into the garden. The sandwiches left by her carer had been pushed around on the table in front of her but not eaten. “Come on mother, you’ve got to eat something”, Joy pleaded. “Don’t tell me what to do!” her mother hissed back at her.
“Don’t fucking start.” The words came out of Joy’s mouth before she had time to hold the thought back and compose herself. Her mother grabbed the sandwiches and clenched them in her fists, she was still easily strong enough to squeeze the cheese and cucumber and white bread through her fingers. She scowled at Joy when she finished.
“What on earth is wrong with you?!” Joy protested.
“Oh go away!”
After ‘the crash’ Joy thought it best for her mother to move in with her, she was working part-time and selling her mother’s house raised enough money to pay for extra care when she wasn’t around. She was increasingly regretting the decision. It wasn’t that her mother actually needed all that much care, it was worse than that. The bouts of confusion, paranoia and rage – the rage that all seemed to be directed at her – were increasingly difficult to cope with. Physically, at least, her mother had the constitution of an ox, and whilst her dementia was slowly and steadily progressing, her fearsome determination was beating Joy down. Joy spent her evenings alone tearfully with a bottle of wine, increasingly hopeless for her future. Her mother was 80 and looked like she could keep this up for another 20 years or more, far longer than Joy could cope with.
Forty years ago in the same room in which they argued, Joy’s son Tom had died. Barely 7 months old, he had been born with severe congenital heart disease and had spent his life in hospital. When he was finally discharged, painfully thin, breathless and wheezy, all he could do was lie back and pant. His arms and legs were scarred from all the needles, his lips were tinged blue from lack of oxygen and his eyes, when they were open, looked anxious and distant. Joy and Roger, her husband, had brought Tom home in the morning. Neither of them felt prepared to be alone with him without the support of the hospital medical staff. They knew they could call for advice at any time, but were ashamed to admit they were scared and couldn’t cope. Neither of them had slept properly since Tom’s birth and on the night after his discharge they took turns to sit with him while the other lay fitfully in bed. It was a sweltering hot night, Joy remembered clearly lying on top of her bed, holding her breath so that she could hear the little squeaks and wheezes from Tom’s room.
Eventually she fell asleep. She awoke with a start, it was a shock to find herself asleep after such a long time. She sat up and held her breath … silence. She walked into Tom’s room hardly daring to breathe, and saw Roger sitting by the window, staring outside, lit by moonlight, holding Tom in his lap. For the first time in his life, Tom looked relaxed, head tilted back against his father’s shoulder, arms and legs flopped over him. For a few moments she stood in the doorway, at peace for the first time since his birth. What happened next she cannot clearly recollect. They fought, she knows that, even though the memories are of pain and fury, grief and loss, and not physical violence. The doctor who examined Tom’s body – the doctor who had never met them, never spoken to them and knew nothing of what they had been through – insisted on a post-mortem because somehow, in their – her – distress, his body, for God’s sake, he wasn’t even alive, had been bruised, and they, Tom’s parents, were under suspicion.
She had a breakdown of sorts after that. She had always considered a ‘breakdown’ to be hopelessly vague as a term, but much like ‘being beside herself’ it was an apposite term for what she went through. To the present day she bitterly resented the hospital for sending Tom home; why didn’t they tell her he was going to die? Obviously he was sick, but if they expected him to die, why did they send him home? Why? Because they didn’t want another death on their unit? Because they couldn’t cope with it? What about us, or me? Roger left soon after, we couldn’t bear to be together after that. Is it like that for hospital doctors too? Is it too much to bear to face death and bereavement? Is that driving the pressure for patients to die at home today? She couldn’t see the point of it herself.
From that day on her left breast had ached terribly. She put it down to grief for the first few weeks, but when it refused to settle, she visited her GP who arranged some tests to check her heart and a mammogram to check her breast for cancer. The tests came back fine and she accepted it from then on as a stigmata, the physical manifestation of her mental grief.
Joy sat in her car outside her office after visiting her mother, wiping tears from her cheeks and checking her make-up in the rear-view mirror. Her breast ached more than ever, punishment she believed, for wishing her mother dead.
She slipped her hand inside her bra to rub the pain away … oh Christ, no! She cursed her mother, the witch, it was her fault. It wasn’t the first time she had felt the lump, it was there last week, and the week before and she was sure it would go, but if it didn’t she would deal with it, make an appointment to see her GP, but not now, not today, not this week. She had too much to deal with already this week.
Joy got out of her car and let herself through the back door into her office, switched on her computer, straightened her jacket and checked her appearance one last time in the office mirror. Taking a deep breath, she walked into the waiting room and called in her first patient.
Further reading and inspiration:
Dr Kate Granger Extraordinary blog by doctor & terminally ill cancer patient musing about life & death
Our unrealistic attitudes about death, through a doctor’s eyes. Excellent essay via the Washington Post. Dec. 2013
“Newly qualified doctors perceive that they receive little formal teaching about palliative or end-of-life care in their new role and the culture within the hospital setting does not encourage learning about this subject”
Junior doctors experience of death. Personal accounts of being with patients who die. Excellent narratives from Student BMJ
On Death and Fear: A Personal Reﬂection on the Value of Social Psychology Research to the Practice of Oncologists. J. Clinical Oncology. Sept. 3rd 2013
5 days: a tale of escalation creep. A tale of a hospital death, explaining why it is is so hard to die well in hospital.
Dying Matters. Blog by hospital doctor, Elin Roddy explaining how she is affected by the death of her patients.
Caring for a dying patient in hospital. BMJ article written by clinical lecturer in palliative care, Katherine Sleeman
Dying Matters. Website with award-winning films, support and end of life education for everyone
This is how you healthcare. An American death in London. Extraordinary writing, worth the subscription cost.
How Doctors Die: Showing Others the Way NY Times 19/11/2013
Discussing and Planning for How to Die. British Social Attitudes Survey.
Shared Decision Making: Place of Death. SDM NHS Right Care
The Facts of Death. Presented by Dr John Launer
A Good Death. Richard Smith British Medical Journal
Mortality and the imagination, talk by Iona Heath at the North West Arts and Health Network, July 7th 2013
How doctors choose to die (infographic via Passare.com)