Retreat to the castle

A few kilometres from the town of Armidale in northern New South Wales, a gravel driveway sidles around the curve of a small hill and ends in a yard of barking dogs at the back of a low dark-brick home. Hugh and Katherine Baden came to live on this property, one hundred and sixty acres of undulating grazing land, in 1968. Throughout the decades that followed they wove themselves into the fabric of the community: working, volunteering, socialising, pursuing various hobbies, putting three children through the local schools.

In November 2005, five months before he died, Hugh Baden announced that he didn’t want any more visitors. ‘Only family,’ he said. ‘Nobody else.’ Katherine had to tell friends of twenty, thirty, forty years’ standing not to come to the house. Many people found it hard to understand. They thought they should be an exception to the rule: they rang up and asked to come just for ten minutes, to bring a meal, to give Hugh a hug, to sit with him, to say goodbye.

‘Don’t even come up the driveway,’ Katherine told them. ‘It sets the dogs off and Hugh gets angry and there’s enough stress in the house already.’

Hugh was well liked, particularly by those who appreciate incisive intelligence coupled with sardonic humour. An agricultural scientist whose career had ridden, if not exactly on the sheep’s back, certainly on the parasites they carry internally, he was regarded as a maverick: someone who had built a formidable reputation as a researcher despite refusing to do a PhD.

‘He started out helping with experiments and went right up to senior principal research scientist,’ Katherine informs me, her voice warm with pride and respect. ‘I think he was a bit of a larrikin – he’d yahoo around the paddocks with the blokes, have motorbike races up and down the railway lines. Someone said to me once, “Hugh never seems to do any work!” But he was one of these people who didn’t need much sleep. He’d spend four or five hours on his papers at night then he’d come to bed, wake me up, and tell me what he’d been doing.’

I laugh incredulously – I would murder anyone who made a habit of waking me at two a.m. for a chat – but Katherine gives no indication of harbouring a grudge. She just adds that she always found it easy to fall asleep but Hugh needed to unwind before he could manage it.

Although small talk, like doctoral study, was another thing Hugh didn’t bother with, a facility with words and a gift for spicing yarns and discussion of current events with peppercorns of dry wit meant that he could be great company. Katherine says when he set out to be amusing, Hugh could have people falling off their chairs with laughter. She thinks his talent as a raconteur blinded friends and colleagues to the fact that he had to make an effort to engage socially. He was essentially an introvert. Interacting with people drained him and he needed time alone to recharge.

When Hugh got sick, this tendency to find people exhausting became more pronounced. They gave him unwanted advice, asked too many questions, stayed too long. His home was his refuge, his castle. The ban on visitors was his way of pulling up the drawbridge. Henceforth his trusted companion, Katherine, was to be the keeper of the gate and handmaiden to his needs.

The details of Katherine’s story about looking after Hugh unfold gradually, in a series of conversations. A mutual friend brokers our first contact. We have moved in overlapping social circles for years without encountering each other. We have a long talk on the phone; afterwards I write up pages of notes punctuated by question marks. Our first meeting takes place at her home a few weeks later. Katherine greets me at the door, a tall, vigorous-looking woman in her sixties with a strong, frank face. We walk through her immaculate house to the family room and settle ourselves on the plush leather sofas. I get the impression that normally she is brisk and decisive about things but that today she is feeling uncharacteristically irresolute, unsure whether she’s made the right decision in agreeing to talk to me. She tells me that yesterday she rang her brother and said, ‘I’m in meltdown. I don’t think I can do this.’ Her anxiety is so obvious that I leave my voice recorder in my bag for the whole of our first interview, figuring that plonking it on the table between us would be a brutal conversation stopper.

She married Hugh when she was twenty-two years old. At the time, she was working as a primary school teacher. She was also the official Mayoress of Benalla; it was her job to accompany her widowed mother, the Mayor, to public functions. Hugh started out as a teacher, too, of high school science, but found it boring, so as soon as he’d done the three years required of Commonwealth scholarship holders he applied for a job at CSIRO and the couple moved to Armidale.

Katherine continued working as a teacher, on and off, until 1997. Hugh applied for voluntary redundancy from CSIRO in 1996 when it looked like his section was going to close down. Katherine’s retirement activities included learning mah-jong, going to the gym, playing bridge and joining groups dedicated to sewing, bushwalking, talking about books and considering spiritual matters. Hugh took up one new activity – competitive shooting – but didn’t so much retire as become self-employed: marking theses, editing scientific papers, and acting as a scientific adviser for a company that made products for controlling worms in sheep and cattle. As a consultant, Hugh was able to retain the aspects of his previous job that he had most enjoyed – working with farmers, being at the cutting edge of research, attending international conferences – and jettison the parts he had most disliked: bureaucracy, organisational politics and the Monday-to-Friday routine.

One morning in July 2004, Hugh woke to find a lump the size of a golf ball protruding from the side of his face. Although the parotid tumour was never conclusively linked to the lung cancer that was diagnosed a year later, the treatment regime of surgical excision followed by five weeks of radiotherapy in Sydney marked the beginning of a rollercoaster ride of fear, hope and worry for the Baden family.

For six months it seemed everything was going to be fine; the worst was behind them. Then Hugh went back to his GP to report that each day, at around three p.m., he would run a high temperature and sweat profusely. After months of investigating possibilities like Ross River virus and Chronic Fatigue Syndrome, and ordering tests and x-rays that revealed nothing, the doctor phoned on the 27th of July 2005 and asked Hugh to come and see him that afternoon to discuss the results of a recent chest scan. He added that Hugh should bring his wife.

Hugh was sixty-three years old and had been a smoker for forty years, but the news that he had lung cancer still took them by surprise.

‘We just sat there. I couldn’t believe it. Because there’d always been this family joke that Hugh would die of lung cancer. We always joked about the most appalling things. We said he’d die of cancer but it never really occurred to us that he actually would. His mother was a chain-smoker and she lived into her seventies and died of a heart attack. We all thought, well, Hugh’s made of the same stuff.’

The Sydney-based oncologist who visited Armidale regularly told Hugh that his cancer was incurable, but said chemotherapy would slow the progression of the disease. Hugh had two rounds of chemotherapy and the tumours shrank by fifty per cent, prompting the doctor to announce that if the trend continued, Hugh might go into full remission. However, a month later the tumours had regrown to larger than their original size.

Hugh and Katherine went to Brisbane for a second opinion about treatment options. The specialist was amazed that Hugh had been able to walk from a nearby motel to the hospital. He showed them x-rays of the large tumours in both lungs and explained that they were inoperable because they were too close to the spine.

‘We should have been depressed,’ comments Katherine. ‘But we found it reassuring. It was the same diagnosis that we had been given by the Sydney specialist.’

The Badens’ acceptance of Hugh’s condition as terminal was something else that other people found hard to understand. It wasn’t the ‘right’ attitude. The prevailing cultural norm is to regard those with cancer as soldiers fighting a war, brandishing the indispensable weapons of hope and positive thinking. People seemed to think it was their duty to act as recruiting sergeants and push Hugh forward to the front line, equipped with whatever was available in the alternative medicine armoury.

Katherine describes her amazement at the liberties people took in dispensing advice: ‘We went to a birthday dinner, and individuals kept taking Hugh aside and telling him that they knew how he could be cured. Someone mentioned a chap who waved his hands above you and miraculously healed you of anything at all. Then there were the folk who gave us books on beating cancer. Everybody wanted to tell us what to do. It was incredible how insistent and repetitive the advice was! They told Hugh over and over again, as if he was a slow learner and he hadn’t understood it the first time.’

It occurs to me that someone like Hugh, a scientist who had spent years dealing with reality in a logical and rational manner, would find it hard to tolerate exhortations to believe in miracle cures and to adopt courses of action based on magical thinking. I ask Katherine whether other people’s insistence that a cure was possible had ever provoked Hugh to argue the point, but she said no. ‘He’d just let them blather on, but he’d come home and he’d be hugely angry. It really was harassment,’ says Katherine. ‘We felt emotionally violated. The fact that it was done with the best of intentions was no consolation.’

Another piece of proffered advice concerned how to spend the remaining time. ‘Why don’t you travel, or go to the coast?’ a woman said to Katherine. ‘You’ve got this short time frame of maybe three months before he gets sick again. Do something!’

Katherine went home and told her husband about this suggestion. ‘What would you like to do?’ she asked him.

He responded with derision. ‘I’ve travelled overseas three times a year for most of my working life. I’ve seen fifty-two countries. And I hate going to the coast. You’ve always known that. The thing I like best is being at home. So please, can I have the privilege of being happy at home?’

‘Fine!’ shrugged Katherine. Although she had been left behind for most of those work trips when the children were small, there had been a sabbatical year in Maine and a research program in Fiji that the family had enjoyed together; and during the last ten years she and Hugh had been camping in the Kimberley region of Western Australia, caught the Tran-Siberian Express across Russia, Mongolia and China with a group of friends from the bushwalking club, and cruised the Inside Passage of Alaska. She could understand why Hugh didn’t see any need to cram more travel experiences into the time he had left.

As soon as Hugh knew that his condition was terminal, he arranged to see a lawyer, to make a clear statement of his intention to be cared for at home, and to die there. This didn’t imply an acceptance of death as imminent.

‘We saw this as being like writing a will. Important, but something to be used in the future. The far distant future, we hoped,’ Katherine explains.

I ask Katherine how she had felt about taking on this responsibility. Did she know what she was letting herself in for? She replies that she gave her consent freely and went into it with her eyes open. However, she doubts whether Hugh would have cared for her in the same way, if their positions had been reversed.

‘No, I don’t think he would have done it for me. I think he might have been too impatient to cope with it all.’

She muses about whether female social conditioning might explain why she accepted Hugh’s request so readily, and then remembers something.

‘When I was twelve, my father died of bowel cancer and my mother looked after him at home. It wasn’t so common in those days. Seeing her cope with it – I guess that’s why I felt that I could do it for Hugh.’

A child’s view of what was involved in caring for a sick husband may not have been the most reliable template for what lay ahead of her. Katherine had assumed that it would be just a variation on the maternal role, but in fact she found herself caught up in the most stressful experience of her life.

‘I had assumed that I could manage on my own. I really did think that looking after someone like that would be like looking after a baby. You would be sleep deprived and feed them and pat them on the back and sure, it’s emotionally demanding, but you can cope. But it’s really not like that at all. I was pushed to my absolute limit, physically and emotionally. And that’s why I ended up with all these people coming to help me, and my brother living in the house for two months. I couldn’t have managed, otherwise.’

The palliative care nurse started visiting early on, while Hugh still felt well enough to manage his regular activities. ‘We both thought it was a bit premature, even though we’d seen the lawyer. She wanted details about our family, where they lived, what our medical cover was. We filled in forms saying how often we wanted her to come and what her role would be. It was confronting, but we had to face the reality of what lay ahead.’

It is a common misconception that palliative care is synonymous with end-of-life care. Ideally, palliative care begins soon after the diagnosis of an incurable, life-threatening disease and goes beyond the relief of physical suffering to include the psychological, emotional, social and spiritual well-being of the entire family. According to the World Health Organisation, palliative care should support patients to live as actively as possible and help the family cope both during the illness and after their loved one has died.

Katherine believes the palliative care services that she received in Armidale were marvellous. She tells me about going to a bereavement support group and feeling impatient with the moanings of another widow who, mistrusting the care available locally, had carted her husband off to Sydney, only to find that in the big city he was treated as just another number. Katherine had roundly informed this woman that the services in Armidale couldn’t be better, and cited her own, radically different, experience. Doctors and nurses made weekly home visits. Respite care was organised for her. When she went to the doctor’s surgery to get a prescription, the usual fee was waived. ‘We don’t charge the Badens,’ was the message relayed in a whisper to the person on the desk.

While she could still leave Hugh for periods, Katherine coped as the sole carer, though it made her anxious. ‘I was worried that he would fall over while I was away. We would discuss whether he could manage without walking about. I went to the gym at eight a.m. for an hour. I often walked for an hour at night. I still played competition bridge three times a week. I needed to go out, but I was racked with guilt. Would he fall? Would he go out to the paddocks? Would he commit suicide? Two of his uncles did that when they had cancer.’ She describes this as a period of doubt and unexpressed anger. ‘It was difficult for me, not knowing what to do. It was tiring and I felt alone.’

Broken sleep was a problem for both of them. Hugh woke up frequently during the night, wanting help to turn over, to get a drink, to go to the toilet. Even when he slept, the bedroom was not peaceful. He talked loudly; he was plagued by nightmares. Katherine would snap to alertness to check if he was okay. Hugh’s eyes became a problem: he couldn’t read any more and his distance vision became blurred. Katherine got a stack of glasses from Vinnies for him to try. They found a pair that improved things but his vision changed again and the problem returned.

Despite the broken nights and the difficulties with vision and balance, Katherine thought Hugh was doing remarkably well. It was a trip to Brisbane to visit a new grandchild that made her realise just how ill he had become.

‘The flight was a disaster. It debilitated him. He went to our daughter’s home and just lay on a mattress on the floor. His eyes were flat and dull and he just lay there motionless. Kerryn was frantic. She said, “Dad is dying! Look at him!” She wanted me to do something, to call a doctor. I refused. I suggested we leave him in peace. He spent most of the weekend like that, prostrate.’

On the last night of the visit, Hugh roused himself to have an evening meal at the home of his eldest son, Alan. Both sons and their wives were there. Hugh ate very little, and after the first course commented that he wanted to say something. The tension was palpable. He told them he expected to die before Christmas and said that he wanted to give each of them $200,000.

Alan and his brother Paul refused the money outright. Katherine and Hugh left. They returned to their daughter’s house, where Hugh’s offer was again vehemently rejected.

The family had understood the severity of Hugh’s illness, but this pronouncement of his impending death was shocking. ‘He basically said: “I’m going to die, I’ll give you some money, and now we’re going home.” The kids were appalled. We had the most horrendous fight over this. They couldn’t believe that he’d been in Brisbane for three days and just before he left he made these dramatic and emotionally charged statements and then went off without giving them any time to react and adjust. It took me about five phone calls to each of them for everyone to agree that it had all been mishandled. They wanted their father alive. They didn’t want the news of his death and the offer of money, together, as if somehow the money compensated for the death.’

Back in Armidale, the palliative care nurse suggested putting a hospital bed in the family room off the kitchen. Hugh used this during the day, but slept with Katherine in their bedroom at night. Eventually he couldn’t walk down the hall. More equipment was provided: a light wheelchair to make the journey between the beds; a commode chair, to bring toileting facilities closer.

Katherine sent out Christmas cards containing the message that Hugh was seriously ill with advanced lung cancer. Communication between Hugh and his younger brothers, Stephen and Richard, had been sporadic as adults, so this was news to them. Each rang Katherine as soon as the letter arrived, asking to come for a weekend visit.

When Stephen came, Katherine made a point of absenting herself. ‘I thought it was better to just leave them, so they could engage in whatever way they wanted to,’ she explains. On her return she found Hugh lying with his eyes shut and his brother sitting quietly on the sofa nearby. She asked Stephen what had been happening while she was out. “Oh, I’ve been reading poetry to Hugh,” he answered. Katherine would never have thought of doing such a thing herself, but she was absolutely delighted that Stephen, who has a beautiful speaking voice, had remembered Hugh’s love of poetry.

Despite the years of infrequent contact, each brother’s visit was both distinctive and successful. Richard, the youngest one, did a lot of work outside. Through the floor to ceiling windows that looked out over the back paddocks, Hugh could see his brother taking care of the chores and befriending the dogs. Richard came inside periodically and reported on his activities to Hugh, who would say “Yes!” in a relieved tone of voice and go back to sleep happily.

Stephen and Richard both returned after the initial weekend to spend a full week at Hugh and Katherine’s house. Katherine says she cried when they left, ‘Because I thought, they’ve connected to Hugh in their own individual way, in a way that I couldn’t. They made this huge contribution to his peace of mind.’

From January onwards, Hugh’s imminent demise was regularly predicted by the doctors. ‘He would look as if he was dying but somehow he would rally. They said to me afterwards that it was being at home that kept him going. They said if you’d put him in hospital he would have died months ago. But real life going on around him all the time kept him stimulated.’

Katherine was beginning to feel ground down by the exhausting days and nights. ‘Hugh would ask to go to bed at about seven-thirty. He didn’t like being alone at this stage and he had a bell that he rang to get my attention. If I left him alone at night, even for five minutes, the bell would ring and he’d be asking when I was coming to bed. Mostly I was happy to sleep, even at seven-thirty. The days were so busy, physically and emotionally demanding, and we were awake a lot during the night.’

‘The bed linen needed changing every day on both beds. It didn’t matter what I did, bodily matter and fluid spread everywhere. We tried all kinds of sheeting, nappy-like underwear, anything that was suggested by chemists, nurses or doctors, but it was all in vain. I wondered how ghastly it must have been for him, how humiliating. This was one topic we never talked about. We went through the procedure in silence every day. I bathed him, changed his pyjamas and changed the bed sheets. His dignity carried him through. It was just something that had to be endured, as often as was needed.’

Word got out somehow about the heavy load that Katherine was carrying. Even now, she isn’t sure how the respite services were organised. Someone must have seen that she needed help, and eventually it arrived in the unlikely guise of twelve strapping blokes on a rota system.

A female manager with Community Health rang from Sydney, insisting that Katherine persuade Hugh to accept care from other people. ‘Tell him this help is for you, not him.’ The woman pointed out that it wasn’t a question of charity, as by looking after Hugh at home, Katherine was saving the health care system about $600 a day.

Hugh capitulated. However, the first respite care experience was almost the last. Hugh disliked having a strange woman sitting with him. He presumed that she would be like other women he had known, wanting to plague him with questions. How was he feeling? Was he comfortable? What was he thinking about?

In fact, says Katherine, this particular woman didn’t say much at all. But Hugh announced he didn’t want anyone except his wife looking after him. Katherine rang to cancel the respite care arrangement. Showing great perception, the local organiser asked whether Hugh would prefer men to come out and sit with him. This was the perfect solution. Hugh had worked in a male-dominated environment all his life and was most comfortable with its bluff good humour, emotional distance, and taciturn style of interaction. There were twelve different men who took it in turns to sit companionably but silently by Hugh’s bedside, allowing Katherine to go to the gym and to play bridge several afternoons a week. Katherine refers to these men fondly as ‘the blokes’ and says every one of them was ‘nothing less than excellent’.

She does report one little hiccup. The help being provided was actually supposed to be ‘home help’. Katherine always had her house perfectly ordered before the blokes arrived, and one of them must have complained that there was no work to do. When asked to give them tasks to complete in her absence, she explained that she only wanted them to sit quietly. She didn’t want them pottering around doing little jobs, even if Hugh was asleep. She wanted them to be visible, a presence in the room, in case he woke up. After this misunderstanding was resolved, the arrangement proceeded smoothly.

Other help was provided by family members. Their adult children took turns to visit on the weekends, flying down to Armidale on Saturday and leaving on Sunday at lunchtime. In the early days, the eldest grandchildren came too. ‘They would play around the bed, climb up beside him, give him a hug. It was astonishing how easily they accepted Hugh’s changed way of life.’

It was during a weekend visit by her daughter, Kerryn, on the 24th of January, when Katherine first wondered if she would be able to continue looking after Hugh on her own at night. Her sleep between the hours of midnight and three a.m. was regularly interrupted by his wild hallucinations. On this particular Saturday, Hugh got out of bed and fell down in the dressing room; when Katherine went to pick him up he bellowed that he was drowning in chocolate. His body was a complete dead weight, he was convinced that he was trapped in a river of sticky chocolate. Unable to lift him, Katherine called out for Kerryn, who was sleeping in the next room. Like Katherine, Kerryn is tall and fit, but it took their combined strength to get Hugh to his feet. Katherine suddenly realised that she’d got to the stage where she felt physically and psychologically unable to handle such crises by herself.

Kerryn made a list of all the hallucinations that Hugh suffered that night. He was firing gunshots down the hallway at an imaginary enemy. He was trying to get a drink of water from a mobile phone. He didn’t know he was Hugh: he thought Hugh had disappeared and Katherine should get in touch with him. At one stage he didn’t know who Katherine was, but he wanted whoever it was in the bed next to him to tell Katherine that she was a really good bloke. It was as if he was acting out his dreams, at full volume and with all the movements.

This kind of thing happened almost every night. Each hallucinatory dream would last about fifteen to twenty minutes, with Katherine struggling to wake Hugh up and bring him back to reality. ‘If I kept at it long enough, or if I could get him to laugh, he’d suddenly snap out of it and say, “It’s my mind, isn’t it?” and I’d say, “Yes, it’s your mind playing funny tricks”.’ They would then go back to sleep for about twenty minutes before the next episode began.

On Sunday, as Kerryn was leaving, she said, ‘You know, Mum, I’m at home with three kids under five. I am flat out and sleep deprived. But I’m in paradise compared to you!’

Respite care allowed Katherine to maintain regular contact with groups of friends at social activities. She realised how concerned people were about her welfare when a casual remark she made at the bridge club brought play at her table to a complete standstill. In response to a comment from somebody about being hungry, Katherine had said, ‘Oh! Well, I have this tremendous craving … ’ There was an immediate, attentive silence, then the solicitous query: ‘What do you crave, Katherine?’ Unfortunately, the object of Katherine’s craving was not something her friends could give her. ‘I crave sleep,’ she announced. ‘My every waking thought is taken up with – when will I next sleep?’

She tells me that on one occasion she lay down on her bed when a respite carer came to sit with Hugh, and she went to sleep for half an hour. However, she decided not to make a habit of it. ‘I woke up and I thought: this is ridiculous. I’ve got things I’ve got to do and if I sleep in the daytime I can’t get those things done and everything’s going to fall apart. You have to answer phone calls and things have to be bought and washing has to be brought in. So you really have to be disciplined to keep it all going. To keep the house tidy and immaculate, because that’s how you like to live.’

Hugh would doze lightly during the day, free of the terrors that assailed him at night. As his bed was in the centre of the house, he was able to drift in and out of conversations, sometimes quite disconcertingly. Katherine remembers a particular occasion when Hugh seemed completely oblivious to the discussion she was having with her youngest son, Paul, and his wife. She said, ‘I’ve got this fantastic quote, this is what life is all about.’ She read it out and invited them to tell her what they thought. Hugh opened his eyes and said, ‘It’s absolute rubbish.’ Katherine was understandably offended. Hugh explained that he agreed with the sentiment of the quote; it was the wording – a corruption of verses from the Bible – to which he objected. The passage, from Ecclesiastes 9:11-12, was later read at Hugh’s funeral service in its original, untainted form:

I returned, and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill: but time and chance happeneth to them all.
For man also knoweth not his time: as the fishes that are taken in an evil net, and as the birds that are caught in the snare; so are the sons of men snared in an evil time, when it falleth suddenly upon them.

Towards the end of February, Katherine’s older brother, Don, a retired veterinarian living in Melbourne, decided it was time to override his sister’s protestations that she was managing and didn’t need his help. He rang and told her that he had booked flights to come and stay and would be arriving in three days.

‘I left home knowing I’d be away for six to eight weeks, possibly longer – I planned to stay until Hugh died. I knew Katherine was struggling and it would be good for her to have someone to share the load. I thought Hugh would accept me, if only because the alternative was hospitalisation,’ Don explained to me in a letter.

Katherine was happy to be persuaded. ‘I had such a close relationship with him when we were growing up – he’s eighteen months older – so when he said he was coming I thought, yes, he’d be okay. I just thought it would work. And it worked beautifully.’

An easy and effective partnership was quickly established. Don assumed responsibility for updating friends and family about Hugh’s condition: fielding up to twenty incoming calls per day and ringing a list of thirty people whenever there was a major change to report. He also administered medicine, stripped beds, did washing and cooked meals. In fact, he took over all the food preparation. ‘I can’t eat your cooking,’ he told Katherine flatly.

Don was keen on Mexican food: beans, tortillas, enchiladas, dips, sauces, small servings of meat, plenty of vegetables. He had brought his own recipe books with him. Katherine stresses what a relief it was, not to have to cook for eight weeks, before admitting to a longstanding aversion to the flavours in Mexican foods.

‘It became a joke. He knew I didn’t like it. But I was so grateful to him for doing the cooking that it didn’t matter what he made. While I was caring for Hugh, I was so tense that I didn’t ever get hungry. I only ate because my brother was there and he would tell me to sit down and have something.’

Katherine was also impressed by Don’s tact, his ability to vanish when he felt the situation required it, such as when the children were visiting, or when she and Hugh needed to be alone. Hugh occasionally became very emotional about the fact that he was dying. Katherine would wrap her arms around him and they would cry together, mourning the separation that was to come.

Ministering to Hugh’s body was an area where tacit embarrassment on all sides led to an unspoken division of labour. Although the children would help give their father a shower, Don did not feel comfortable about getting involved with these kinds of activities. When Hugh became bedridden, Katherine learned how to wash him by rolling him from one side to another. She also took responsibility for giving his bottom and hips an affectionate pummelling with her fingers several times each day, in order to avert bedsores.

One night in March, Katherine decided Hugh looked so dreadful that his death must be imminent. ‘His whole face had collapsed and he’d gone a peculiar parchment yellow colour. His eyes were completely expressionless, it was like his brain had turned off. I really thought he was dying. I thought he was only going to last a couple of hours. I rang the children at midnight and said, “You’ve got to come. Please come; come now”.’

Alan, Kerryn and Paul bundled spouses and offspring into cars and arrived in Armidale at five o’clock in the morning. Hugh rallied: he didn’t die. When the children had gone, he explained to Katherine that she had made a mistake. Not in deciding that he was at death’s door when he wasn’t, but in assuming that when the time did come, he would want all his loved ones gathered around his bedside.

‘Don’t you dare have the family here when I die,’ he told her.

‘What do you mean? Of course I’m going to have them here!’ Katherine said.

‘Don’t you dare,’ Hugh reiterated. ‘I’m not going to die while the family is here. You’ve got to promise me that you will be the only person with me when I die.’

Katherine was totally taken aback by this demand. She found it extraordinary that Hugh’s sense of privacy ran so deep. She says that if she were dying, she’d want to have her bed set up in the mall in the centre of town, so everyone she knew could be there with her.

A shared sense of humour drew Katherine and Hugh together when they first met, and she feels this aspect of their relationship carried them through to the end despite all the difficulties along the way. In a letter she wrote during Hugh’s final weeks, she commented that although her husband’s body no longer looked like Hugh Baden, the essence of the man she had married was still alive because he could still make her laugh.

‘That’s such a uniting thing in a relationship, isn’t it?’ she says to me. ‘Being able to laugh together?’

Don was amazed by Hugh’s stoicism in the face of his increasing frailty and inability to look after himself. He comments that most people, given a choice, would elect to die at home in familiar surroundings, tended by their family; but he thinks that overseeing the gradual deterioration and death of a loved one takes incredible physical and mental strength. In April, he decided they couldn’t continue caring for Hugh at home.

‘I’ve wrecked my back, I can’t lift him. We’re going to have to send him to hospital,’ he said to Katherine.

‘No, no, no,’ she said. ‘We can make it.’

In fact, Hugh’s death was only three days away. Katherine felt sure the end was near: the hallucinations of the previous night had featured Hugh repeatedly yelling out for a taxi. ‘I’ve never heard him so agitated. “Taxi! Time to go! Come on!” I thought, he’s ready to die. He’s ready for out of here!’

On what turned out to be Hugh’s last day, the palliative care nurse visited and told them that she didn’t think it would be long now.

‘But not today,’ suggested Hugh.

‘No, not today,’ agreed the nurse.

‘But maybe tomorrow?’

‘Yes, maybe tomorrow.’

‘Katherine thinks it’s time I went, anyway,’ said Hugh.

‘Yes, I do,’ she flashed back. They both laughed.

Hugh died that night, on the 25th of April 2006,at twelve-thirty a.m. The doctors had warned Katherine that his dying might be hard. ‘They said it could be dreadful – the tumours would burst, he’d be haemorrhaging blood out of his mouth, I wouldn’t be able to manage.’ But in fact he died with full control and dignity, just as he had always lived. Katherine was woken from a deep sleep by a bellowed summons: ‘Kath!’ She leapt across the room to Hugh’s bed and grabbed hold of him; he looked at her, and died.

People’s names have been changed in this story

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A Hospital Bed at Home Copyright © 2014 by Janene Carey. All Rights Reserved.

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