In the nine years spanning my mother’s initial diagnosis of breast cancer and her death in November 2006, people often told me how much they admired her ‘fighting spirit’ – her determination to conquer the disease that kept returning to ravage her. I didn’t like the martial imagery but found myself employing it too, just in a different way. From where I was standing, the cancer was the fighter, a relentless opponent, always coming at her with another jabbing punch. To her breast, chest, hip, groin, then the knock-out blow, to her brain.
Mum’s chief defence was an unflagging but anxiety-ridden optimism; her attitude was quite literally never-say-die. As the number of tumour battle sites mounted, I could see that the odds were stacked against her, but she never reasoned in terms of probabilities. She took refuge in the good news stories told by survivors, she quested after the miracle cure that would confound medical science, she prayed to God for healing. Was this courage, I wondered? This refusal to accept the most likely outcome, this frenetic hunt for an escape clause?
As her condition worsened, maintaining the fiction of a happy ending became more difficult. By March 2006, she was troubled by a growing list of distressing symptoms that her medical advisors did not seem to be able to fix. She fretted about whether she should see another doctor, someone ‘less negative’ than her oncologist, who had told her quite bluntly that she would not get better. I refrained from mentioning that not only did the oncologist think she would ‘not get better’, he had informed me that she would ‘get progressively worse’ and only had a few months to live. During these kinds of conversations with my mother, I would feel like I was groping in the dark, trying to gauge her willingness to talk openly, wishing I had a more finely honed instinct for knowing what to say and what to leave unsaid.
As it happened, Mum lived for five months longer than her oncologist had predicted. However, during this time she was in a state of piteous dependence: bedridden, unable to walk, talk properly or feed herself. For the last three months she was in a nursing home, wasting away to a husk. Even so, when the doctor told her in November that she had contracted pneumonia and he planned to let it run its course, she was not at all inclined to see it as a merciful release. Her body tensed with fear and her face spoke her anguish.
The registered nurse on duty that day was Deb, a whippet-thin blonde whose brisk efficient manner hid a core of genuine kindness. She took me aside and said that the strength of my mother’s reaction had taken both her and the doctor by surprise. ‘She was so upset. She was horrified. It made me realise that we’ll have to change how we’re interacting with her.’
‘What do you mean?’
‘Well, most people who move into a nursing home understand that they’re going to die here. They often make jokes about it, and so do the staff.’
‘You mean you’ll have to stop saying, “So you’re still here, then?” when you walk into her room in the morning?’ I asked.
‘Yes,’ said Deb, laughing. ‘That’s exactly what I mean.’
I rang my brother Michael, marvelling that Mum was still rejecting the idea of dying even as her body was shutting down its last remaining functions. ‘I don’t think she’s ever going to accept it,’ I said.
‘Well, I wouldn’t either.’
His comment made me wonder why I was still clinging to the expectation that my mother should meet this coming death with serenity. She’d never been serene. She would die as she had lived.
Caring for someone who is terminally ill is not a subject that is easily broached in Australian society, and so, like most people, I was unprepared for the overwhelming physical, emotional and psychological challenges it entails. I had assumed that I would somehow rise to the occasion but instead found that I was sinking under the stresses, ground down by worry, injury, lack of sleep and anticipatory grief. Writing about what I was going through, often in the middle of the night, was part of how I coped.
When it was over, I felt impelled to investigate other people’s experiences. I decided that I would write a book of stories about what it is like to be a caregiver during the weeks, months and years that can stretch between the day someone you love is diagnosed with an incurable, fatal disease and the day of his or her death. It was immensely reassuring for me to find that other carers struggled, as I did, to do the job well, and to realise that we had faced many of the same difficulties. Tracing the trajectory of each story biographically helped me to recognise that carers and patients bring to their roles the full gamut of typically human strengths and weaknesses, plus all the complications of their pre-existing relationship. To find the situation extremely difficult at times is entirely normal; to respond imperfectly at times is entirely understandable. I felt a great load of residual guilt lift from my shoulders as I wrote.
The stories in A Hospital Bed at Home show how particular individuals have dealt with the awesome responsibility of overseeing the journey toward death of someone they love. I hope that these true stories will help caregivers – past, present and future – understand that other people have trodden a similar path, found it just as tangled and circuitous, yet managed to forge a way through that worked for themselves and their families. I hope the stories also serve to increase understanding and empathy in the general community, and among health professionals and policy-makers, about the problems faced by family carers and the kinds of support they may need.
Janene Carey