No big deal

Maxine is a petite, attractive woman in her early fifties with brown eyes and unruly dark hair. As we sit talking at her cluttered kitchen table, light from the window over the sink catches the hennaed highlights in her curls. She is telling me how her partner, Gerard, faced his death four years ago with a cheerful acceptance that some people found confusing.

‘People would ring up and ask, “How are you?” and he’d say, “I’m wonderful! I’m so good! How are you?” And they’d be totally taken aback. They’d go, “Oh … great!” And I’d have to get on the phone and tell them, “Actually, he is still dying of a brain tumour”.’

Gerard saw his death as just the end of one lifetime; a stage on the journey towards enlightenment. This understanding was rooted in almost thirty years of intensive study and dedicated practice of Buddhism. Maxine, also a longstanding Buddhist, still sounds awed by what Gerard managed to achieve when put to the test. ‘He was coming from a very strong space. It was obvious nothing fazed him – he was totally at peace with whatever was going on. There was no fear. Absolutely not one scrap of fear.’

‘Were you afraid?’ I ask.

‘I think I was annoyed with him!’ she declares. We both laugh. ‘He was so calm. So accepting!’

‘What did you want him to do?’

‘Just be a bit more emotional!’ She puts her hand over her heart to indicate exaggerated sentiment. ‘Like, “Oh, I’ll miss you!”’ She thinks for a moment, then drops back into her normal tone to add, ‘Well, he was emotional, but it was about the children. He knew the attachment to them would be the hardest thing to let go of.’ Sujata, the eldest daughter, mentions to me later that her father was crying when he told her how much he was going to miss seeing her and Jhana grow up.

The first indication that something was seriously wrong with Gerard was when a routine eye check revealed he had no peripheral vision. Alarmed, the optometrist recommended a brain scan. I ask Maxine about headaches, but she says there hadn’t really been any symptoms. ‘He’d been a bit withdrawn. I’d assumed it was because he’d just come back from a meditation retreat. He told me later that he’d been sick while he was away. He was slow, he felt like he couldn’t do things properly. He thought it was his heart.’

The CT scan showed a large tumour deep inside Gerard’s brain. The next day, a crowd of shocked, tearful people gathered to see Maxine and Gerard set off on the six hundred kilometre drive to Sydney for more tests. Their teenage daughters were left in the care of a friend. The car trip provided uninterrupted intimacy for intensive talking about their relationship and their life together. It was nourishing, affirming. It was also the last time Gerard was capable of having a conversation of any depth.

The couple had met at a Buddhist centre in Sydney when Maxine was twenty-three years old and Gerard was thirty-four. She was a registered nurse and he was a registered psychologist, but neither was following the conventional path for their profession. Gerard was involved in setting up a residential program offering no-drugs care for people going through major episodes of mental illness. Maxine had written to the Dalai Lama asking for a job when she finished her nursing training, and spent eight months working in a Tibetan children’s village. Later, she and Gerard established a health dispensary treating Tibetan refugees with tuberculosis, at the Sera monastery in southern India.

After coming back to Australia, they tried living in various places – Tasmania, the southern highlands, Wollongong – before finally settling on a ramshackle property of about ten acres near the tiny town of Uralla, in northern New South Wales. Gerard became a counsellor at the University of New England; Maxine taught yoga, did homebirth midwifery, and worked casual shifts as a nurse at the local hospital.

Going to Sydney for Gerard’s biopsy meant a return to close encounters with noise, traffic, pollution and crowds. An abrupt shift to big city life can be an unwelcome side effect of specialist treatment for country patients and their caregivers. Maxine also had the disquieting sense that she and Gerard were being sucked into a large, impersonal medical machine that stripped complex identities back to salient body parts. This patient is an eye. That one is a brain.

In the journal she kept intermittently throughout Gerard’s illness, Maxine wrote:

Being in Sydney is horrible. Gerard is amazingly positive and ready for anything. Death in two weeks. Loss of speech or vision. Chemotherapy or radiation poisoning.

The ironic tone suggests she was finding it hard to match Gerard’s sanguine attitude. To accept his downplaying of the situation; to agree with him that dying was no big deal. At this point she was scared, buffeted by waves of sadness. She wasn’t sure she would be strong enough for what lay ahead. I don’t know if I can look after a disabled husband. I know that I am selfish and need my own space. But she recognised a spiritual opportunity in what was happening. It’s going to be our biggest Dharma teaching yet.

It was a few days before they were told the news that Gerard had an inoperable glioma, an aggressive glioblastoma multiforme tumour, in the left parietal lobe of his brain. Already he was deteriorating physically and mentally. I just took Gerard for a walk and he is quite wobbly. And his words could be a little worse today. The prognosis was stark: without treatment, life expectancy could be measured in terms of weeks; with treatment, months. Maxine wrote the following poem in her journal:

Learning to overcome fear
No projecting into the future
Allow the future to be
So being left in the everpresent is all there is
Embrace life and experience without discrimination
Easy to embrace good experience, but much harder when things are tough & insurmountable
Wallowing in emotional vortex is totally incapacitating
I will take on the challenge

Gerard moved into the Jean Colvin Hospital at Darling Point while he had six weeks of radiation therapy. Jean Colvin Hospital, operated by the charitable foundation Can Assist, offered subsidised accommodation, meals, transport and nursing care for country people who needed to stay in Sydney for cancer treatment. Both Gerard and Maxine wanted to keep life as normal as possible for their children, so Maxine spent most of that time at home with them. She organised social activities for Gerard from a distance, putting him in touch with old friends he had not seen for ages, up to twenty years in some cases. As well as brightening his weekends, this was an opportunity for him to gather up the different strands of his past and connect them to his present situation. Another bonus was forging a stronger bond with his mother-in-law. ‘My mother visited him a lot, took him out. She developed a real affection for him. And he did for her. It hadn’t ever been there before.’

Maxine thinks that the enforced separation was useful for the girls as well as for her. ‘It gave us time to regroup as a smaller family unit and work out what we needed to do.’ One of the most urgent tasks was coming to grips with the domestic finances. This had always been Gerard’s province. ‘He’d done everything financially for our family. I really had very little idea. He didn’t mind doing it, so I just let him. But he’d kept everything, going back years, masses of stuff. So suddenly there I was with this huge office full of papers to sort through.’ There was also a large mortgage, covering the property where they lived plus a house in Armidale that Gerard had used as his consulting rooms. By the time the treatments were finished, Gerard was incapable of thinking about financial matters. Maxine got a friend to help deal with the piles of old receipts in the office and arranged to sell the Armidale house. If she tried to consult Gerard about any of it he would say, ‘I don’t want to know. Don’t ask me that.’

Gerard came home a different man. Before, he’d spent most of his evenings locked away in the office, absorbed in his own thoughts. He had long been fascinated by the intersection between Buddhism and western psychology; he would often get up early in the morning to write down his ideas or speak them into a tape-recorder. Over the previous few years, friends and family had noticed Gerard becoming less sociable, more inclined to go off by himself. Maxine had accepted this gradual withdrawal, assuming Gerard had reached a stage of life where he felt he had to devote more energy to achieving his personal goals. Now, that introspective focus and emotional distance were gone. Gerard spent a lot of time just sitting, content to hang out with Maxine and the girls. ‘There was something lovely about him that we hadn’t seen before. A lot had dropped away, leaving this really childish side. He’d get enthusiastic about things. He was very present; he was living in the moment.’

I ask whether, as a Buddhist, hadn’t he been like that previously? She says, ‘Well, he was quite intellectual, Gerard. He always had a lot going on in terms of writing projects.’ Given that we are working together on a writing project at the moment, that comment strikes us both as highly amusing. Maxine says something that sounds like ‘Watch it!’ in the middle of our chortling.

Maxine and I have known each other for about fifteen years. I don’t think either of us would claim the other as a close friend: more like acquaintances whose paths have intersected at certain points. She was the midwife I saw throughout my first pregnancy and she attended my labour, offering unflappable support as the planned homebirth morphed into a hospital caesarean. I knew Gerard slightly too, in his role as a counsellor at the university. My partner Chris and I saw him about commitment issues in our relationship, during our pre-babies phase. Some time later, when we had a backyard full of offspring, Gerard bought the house next door for his psychology practice. We didn’t see much of him, despite the proximity. I do remember discussing pets with him once, over the fence. I was trying to offload a litter of guinea pigs; he said that his girls had ‘done’ guinea pigs and were on to ponies.

We had moved by the time Gerard became sick so although I heard about it, I wasn’t involved at all. And then suddenly, recently, Maxine was back in my life for an intense, emotionally fraught period. She was the nurse at the other end of the phone when I rang from a conference in Canberra, desperately seeking news of my nine-year-old who had just been admitted to hospital with a burst appendix and peritonitis. Maxine had seen him come in. I wanted to hear that he was going to be fine but instead of saying reassuring things she was grave, said he looked very bad and his white blood cells were way up, or way down, I don’t remember which. My son recovered, eventually. Maxine was his favourite nurse.

When I asked Maxine if she would like to be involved in my research project about home-based palliative care, she said yes, because she wanted to talk about how it was possible to bring serenity to the process of dying. At our first interview we discussed the time following Gerard’s diagnosis, when the tone of the next few months was shaped by his ‘no big deal’ attitude; and then she told me about the period immediately after his death, when friends and family gathered to make his passing as auspicious as possible. However, this left a big hole where the middle should be, so I went back for more details.

Sujata, looking very slender in a flared handkerchief skirt and a t-shirt featuring a line of little yaks with Yak Yak Yak written underneath them, met me at the door and explained that her mother had gone shopping but wouldn’t be long. We chatted about her recent trip to India – presumably the origin of the t-shirt – and how she was enjoying studying medicine. I was trying to be circumspect about the purpose of my visit because I didn’t know what Maxine had said to her, but it turned out that Sujata knew all about it and had some memories she wanted to contribute. So the three of us sat around the kitchen table and they talked about what it was like looking after Gerard for the two months between the completion of his radiation treatment in Sydney and his death.

Despite her competency as a nurse, Maxine initially found having Gerard back home quite overwhelming. It took a few days to adjust to the fact that her husband was now a shadow of his former self, dependent on her care. The role shift was hard for the girls as well. Sujata remembers how incongruous it felt, coming home from a day at high school and having to talk her Dad through the process of using the toilet. ‘He just couldn’t remember how. I had to tell him to turn around and sit on it. It was little things like that that made you realise how sick he’d become. How much he’d deteriorated. Having to help him in things that you really wouldn’t expect you’d ever have to.’

It was also disturbing for the family to see Gerard grappling with the frustration of not being able to express his thoughts. His mind was unravelling relentlessly. For the most part he managed to maintain his habitual even-tempered disposition, but there were occasional bouts of agitation that were all the more shocking because they were so out of character. Sujata says, ‘There was one night, I’d gone to bed, but I could hear what was happening. He wanted to know something but he couldn’t actually say what he wanted to know. He was very confused. He was shouting, “Maxine! Just tell me!” That was a bit scary, because he was normally so calm.’

One of Maxine’s main priorities was minimising the impact of Gerard’s illness on the children, so she encouraged them to continue all their usual activities. Sujata, in Year 11, was a member of the Armidale Youth Orchestra as well as playing violin and piano accordion in a popular folk music band called The Gypsy Hot Club. Jhana, in Year 8, was also a talented musician. Maxine never expected that the girls would be totally accepting of what was happening at home. She thought it was perfectly understandable that teenagers might find it annoying, or embarrassing, to have a parent around who was operating at the level of a small child, unable even to go to the toilet without assistance.

‘Other families may do it differently. Other families may just stop everything and just sit around and wait for it to happen. I don’t know. But it was much better for us to keep doing what we normally did. So even though at times that could have been more pressure, it was still a diversion from what was going on. Sometimes I even suggested to the girls: just stay in town, don’t come home if you’ve got something on. Just to have a bit of space from it, because it’s a really intense time,’ Maxine explains.

Maxine’s diversions were her work as a midwife and painting lessons at TAFE. She found the drama and joy of bringing new life into the world was therapeutic. She was relieved to discover it was actually possible to think about something other than Gerard’s illness. She also felt financially driven to keep earning for as long as she could, so she would be able to take as much leave as she needed later. But I am surprised when Maxine tells me that she stayed at work until three or four weeks before Gerard died. ‘Was he well enough to be left in the house by himself before then?’ I ask.

 ‘No, no, he was never on his own,’ she answers. ‘If I was working, we’d have someone here.’

Looking after Gerard became a community project. Friends of the family organised themselves into shifts to cover the hours Maxine would be absent. The people who came around to help were a mixture of their Buddhist friends, music friends and friends in general. They all wanted to be useful; they all wanted to spend time with Gerard. They came bearing gifts: cooked meals, fresh fruit, vegetarian quiches, special treats for Gerard like ripe strawberries and dark chocolate to dip them in. One friend gave the whole family soothing reflexology sessions during her visits.

I spoke to one of Gerard’s former students, a slightly-built elderly lady with apple cheeks and soft, round, blue eyes, about her contribution during these months. As well as buying things for Gerard that she thought he would find useful, like slip-on sandals when he couldn’t tie his shoe-laces, long shorts for warmer weather, and extra underwear, Beverley put her name on the roster several times a week. She would arrive about ten in the morning and spend the day sitting quietly, responding if Gerard wanted to talk or needed assistance; doing whatever was necessary in terms of preparing food, answering the phone, and washing-up; leaving when Maxine returned around six o’clock. I asked if she ever felt uncomfortable about being in their house, but she said no, she felt welcomed by the whole family and thought the dignity Gerard brought to his dying was a great teaching.

‘We were just there in case he needed us, and it was very peaceful. He appreciated it very much; you felt that he really appreciated it. And he was so inspiring … I can’t remember him ever grumbling or complaining. If visitors arrived, he would always ask “How are you?” and focus on them. It was a privilege; we thought it was a privilege to be there,’ Beverley said.

Another friend moved into the house for several weeks in October. A big, strong bikie with a shaved head and a ring through his nose, Charlie had lived with Gerard and Maxine in Wollongong. He just turned up on his motorbike and announced he’d heard Gerard was sick and he had come to help. His tattooed muscles were a welcome addition to the household. Gerard, solidly built and six feet tall, had become more tottery and Maxine and the girls were finding it hard to manage him.

With Charlie’s assistance, Gerard was able to accompany Maxine, Sujata and Jhana when they went with the other Gypsy Hot Club families to Dorrigo for a music festival. Gerard was quite sick by then but didn’t want to miss an opportunity to see his girls performing. Maxine remembers that he had a great time; he even came along to the pub after the main event, at midnight. ‘He was just sitting there, looking a bit out of place with his beanie on and a big smile on his face. He didn’t want to go to sleep. Every so often he’d really wind up and he’d want to do everything.’

The palliative care nurses came to the house once a week. Maxine knew them from the hospital and appreciated their practical attitude to managing death at home. ‘They’re really very good in the way that they give you permission to do what you’re doing. And encourage you. It just normalises it. And anything we wanted in terms of equipment, we got the next day.’ I ask what sort of aids they ended up using and Maxine and Sujata reel off a list: a special mattress that prevented bedsores by rhythmically inflating and deflating; a sheepskin for Gerard to lie on; booties for warm feet; a urodome for incontinence; a wheelchair; a lifter.

They also received supplies of medication: a low-dose morphine infuser for pain and a valium suppository in case Gerard had a seizure. When he did have a massive seizure one night, it occurred to Maxine that at this point many people would decide their loved one would be better off in hospital. ‘I can see why you could panic, if you didn’t have any experience and you’re by yourself at four o’clock in the morning and your loved one’s having a fit, you’d think: am I being unkind, keeping him at home?’

‘You’d say, “I can’t do this by myself. I don’t want this responsibility”,’ I suggest.

‘Or maybe, “Someone else needs to make a better medical decision about his symptoms?” But when someone’s dying, it’s not like you’re going to be able to do anything to save them. I was just glad I had something to give him. I was pleased that I knew it was going to pass; it would probably just be short.’

Gerard’s teacher, Venerable Acharya Zasep Tulku Rinpoche, came from Canada to farewell him and to help plan the practices that should be observed after his death. Maxine and Gerard had studied Gelugpa Tibetan Buddhism under Rinpoche’s guidance for more than two decades. Gerard was his most advanced student; in 1995 Rinpoche had appointed him as a Dharma teacher and authorised him to give initiations.

23.10.03
Gerard is in the last throes of his life. He is succumbing to the tumour now. He has right sided weakness and cannot take his own weight. He cannot talk. He is sleeping. He is calm. Now he doesn’t have to wake for anything. He is comfortable. I am letting him go. We all have to let him go. He was incredible when Rinpoche was here. He waited for him and the day he left he let go himself. He has no attachment to life. I have deep love and attachment for him. But I can offer this to the universe. I am blessed to be going through this process with him. Now I am not working and we are full on doing palliative care. No more hope just release into the sphere of voidness and empty space.

After Rinpoche left, Gerard lapsed into semi-consciousness. He had summoned amazing resources for the visit, but crashed afterwards. ‘We had a little party the last day Rinpoche was here. Gerard was sitting there on the settee, chatting away to people. You know, really making sense. Whereas in the week or two before, making sense had really come and gone… That week after Rinpoche left, he just basically went to bed.’

Friends carried Gerard out to lie in his beloved gompa, the elaborate mud-brick Tibetan Buddhist temple that Maxine and Gerard had constructed on their land soon after moving to the property. His bed was placed on the floor of a small side room. Friends and family came and went, sitting on the bed talking and laughing, as Gerard drifted in and out of consciousness, sometimes opening his eyes and smiling before sinking back into sleep. The gompa is a serene space of stained glass windows and polished wooden floors, reached by crossing a lush water garden. It does not surprise me that even with someone dying there, the atmosphere would be peaceful, not tragic. Maxine remembers one particular Sunday afternoon when Sujata and a friend were serenading Gerard on their violins, playing a mixture of classical music and Gypsy Hot Club songs. ‘It was just lovely,’ she says. ‘So relaxing.’

24.10.03
Listening to his breath
Mattress breathing
Rhythmic air in air out
Regular timeless breath
Pulse thready bare
Thread bare
Going going gone
Gone beyond
Totally at peace
Total acceptance
No struggle
Ebb and flow of life is all around us
Letting my partner of 24 years go
I will accompany you for as long as I can then you are gone
No longer touching your living body
When you are gone
This breathing will stop

One of my friends, Trish, visited Gerard on his last day. She says he was lying on his back unconscious, occasionally quivering and moaning. Maxine increased the level of morphine he was receiving through the infuser, and asked Trish to put more salve on his stomach, where an insufficiently wrapped hot-water bottle had left a large white burn. Four people were tending to Gerard at once, trying to soothe him. Two of them were stationed at his feet, washing and massaging. Charlie began shaving his face. Trish remembers Gerard moving his head toward Charlie’s hands as he worked, as though he found the touch of the warm face-cloth and the razor comforting.

Gerard Allan died at 4.30 a.m. on Tuesday 28th October, 2003. Maxine was sleeping nearby, in the main hall of the gompa, and was woken by the dogs barking. She came into Gerard’s room in time to hear his final breath. She shows me a photograph of Gerard taken soon after his death. His face is peaceful. He is wearing some kind of red headgear that contrasts vividly with the bright blue pillow he is lying on, the sunny yellow bedcovering that is pulled up to his chin, and the white mosquito nets billowing softly on both sides. I comment on the beautiful arrangement of colours. She tells me that the red Tibetan hat and the yellow robe were special things that Rinpoche had given him.

The time immediately after death is highly significant in the Buddhist tradition. The spirit of the person has to be assisted to make a good karmic transition. Maxine says everything fell perfectly into place, and she felt Gerard approving all the way. Crying did occur, but mostly there was a sense of calm purposefulness. There were things to be done and a certain way to do them. The girls were swept up in the process. People were in and out of the gompa saying prayers until late at night. One of the practices involved calling out ‘Hik!’ while imagining the consciousness of the dead person leaving their body through the top of the head in the form of light and going into a pure land. On the second day, fourteen-year-old Jhana woke up early and was the first to go back into the gompa and resume the ‘Hik!’ ritual. ‘I thought it was amazing, that she had the confidence to do that,’ says Maxine. ‘To just go in by herself with a dead body.’

A friend with woodworking skills made a simple casket out of pine board. Another communal endeavour formed around decorating the casket with brightly coloured pictures and auspicious symbols. Visitors who came to pray, stayed to paint. Maxine thinks that these practical activities in a time of heightened emotion helped to normalise the death for everyone involved. ‘People were just hanging around painting the casket, having fun. My mother said she’d been nervous before she came but when she got here it was so nice, everyone was so happy.’

The funeral was harder. Although it was held at home, Maxine describes it as ‘the more public’ part. She felt the preceding three days had helped the family and close friends get to a point where they were ready to let Gerard go. ‘But you could feel the immensity of everyone else’s grief as they came to the funeral. And that was kind of hard. People are so messy with what they project onto you.’ She found this irreverent. Something else she didn’t like was being an object of pity. ‘You get so sick of hearing the word cope. Like, “How are you coping, girl? How are you coping?”’

I suggest that the focus on ‘coping’ is shorthand for acknowledging that this could be a difficult time for her. She agrees, but says underlying people’s well-meant commiseration is a mistaken view of a loved one’s death as something implacably awful.

‘People think it must be just horrible that it’s happened, you know, that the kids have lost their father and so on. But there were so many beautiful aspects of it that the word coping doesn’t seem to incorporate. What you’ve been through, in some ways it’s the most amazing experience. You’ve had the privilege of going through it with someone you’ve loved. They’ve let go totally in front of you and you’ve been trusted to be with them. It was actually a really beautiful experience. It was transformational. It didn’t feel negative at all. So I guess cope feels like it’s really negative, and that you’re having a really hard time, all the time, and you’re not.’

At the funeral, no eulogies were read. In fact nothing was said in English at all. As people came out of the rain and into the gompa, they were given a mantra to chant. THA YA THA: GATE GATE PARAGATE PARASAMGATE BODHI SOHA. Translated, this is ‘Gone, Gone, Gone Beyond, Gone Completely Beyond. Awakened. So Be It.’ The mantra repetition helped ward off displays of uncontrolled emotion and preserve a calm atmosphere around the dead body. Then a group of monks arrived and took over the chanting. This was an aspect of the funeral that Maxine felt demonstrated an eerie sort of karma in operation. At the beginning of the year, long before there was any indication that Gerard was ill, they had arranged for five Tibetan monks to visit Armidale from the 25th of October to the 2nd of November, to demonstrate the art of sand mandala construction, give concerts and conduct a retreat. ‘So they were here the week he died. On their day off, the monks were able to come out to the funeral and do the chanting.’

The funeral ended with Sujata and Jhana playing their violins. Then the heavy casket was loaded into the back of a station wagon and driven to the local funeral home and crematorium. Maxine had been documenting events with her camera for the past several days, but even she was surprised to find that she had taken a photo of Gerard descending into the furnace. Through a closing aperture you can see the casket sitting in a small concrete chamber, with the floor beneath it dropping like a lift. ‘That’s going down. He’s just pressed the button. Isn’t it incredible? I couldn’t believe I took that photo. I don’t even remember taking it.’

I comment that the funeral directors seem to have been remarkably tolerant and flexible. Allowing them to rock up with a body in a home-made coffin in the back of someone’s car. Allowing the group of mourners, which included a posse of chanting monks, to go behind the scenes at the crematorium instead of insisting that they all stay on the conventional side of the discreet black curtain. ‘Oh, Piddington’s were fantastic!’ says Maxine. She tells me that home-death, like home-birth, is all about empowering yourself to take control of the process rather than being passively swept along by the system. Ensuring that Gerard had the sort of death he wanted, the full Buddhist send-off, was the highest gift, the last act of love, that she could give to him.

15.11.03
I am learning to function and find a way to be clear despite overwhelming emotions. Last night was hard, coming home to an empty house. The girls had symphony practice and I stayed at home and felt lonely and sorry for myself. But tonight has been better. I felt anxious about being alone again and was going to ring someone but after going for a walk I started enjoying myself. Enjoying being alone. Noting that emotions, thoughts, feelings, sensations all pass. That’s what I told Sujata. Everything passes. Take refuge. Dharma is all that truly helps. Everything else gives temporary relief. Even people.

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

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