THE FARM, 29 MARCH 2014
Home. We give the ambulance men a quick cup of tea after they settle David into our big bed. I thank them profusely and almost immediately David drops into an exhausted sleep of relief. Everyone will be coming to the farm. Our ex-daughter-in-law Lorna from Melbourne, and two more of the grandchildren; Tony and his wife Leslie and their two little ones from Sydney; middle son Aaron and his wife Rachel from Mudgee and eventually Miriam’s husband Mark and four sons from Adelaide.
Within an hour we’ve hit a problem we didn’t anticipate. From the intensive care ward I left messages for the regional palliative care team to notify them of David’s transfer, but now that we’re here I pick up a message on the landline saying they close down over the weekend. We have the small quantity of morphine that we’ve brought with us from the hospital but not nearly enough pain relief to get us through the next two days and nights.
I contact our local GP, who agrees to organise some additional pain meds. He’s a lovely man, very caring, but obviously a bit reticent to give us as much morphine as would be supplied under supervision by the palliative care team. It’s a big responsibility, allowing people to administer possibly lethal drugs to close family members. We understand his caution, but Miriam’s really concerned that we won’t have sufficient morphine to keep him comfortable until Monday. Our GP came out and can clearly see that we are very well organised but sticks to a prescription quantity, which is well below what David was being given in hospital.
A roster is drawn up, so that one of the adults will be at David’s side twenty-four hours a day. I will be with him too, in our bed during the night, but I will be trying to sleep because the children are determined that I get some rest and that I won’t have any concerns about the logistics of their father’s care. They work together as a tight-knit team. I can’t even begin to express how loved and supported I feel and I know that David feels the same. Even though he cannot communicate coherently, his entire demeanour has changed since getting home. He’s serene at last. No longer wild-eyed, agitated or belligerent, he’s able to make his immediate needs – in particular the toileting but also the pain relief – easily understood. He’s never alone, not for one second, and I spend most of the day propped up beside him, being brought cups of tea and then later glasses of wine and delicious food.
Someone is cooking, someone is entertaining the children, someone is splitting logs for the fire and someone is dashing into town to fill the prescriptions and get more food supplies.
Miriam gathers together every possible additional pain medication in the house, because she realises they will need to keep topping David up constantly. His mouth is incredibly dry as he no longer seems capable of swallowing even fluids, so administering the oral meds is a nightmare. They must be ground into a paste and put into his mouth in small increments with squirts of water so that they can be absorbed. The kids don’t fill me in on all these troublesome details, as they don’t want me to stress.
I manage to sleep that first night, at least six hours, with the help of wine and some calmative drug from the kit. I do wake several times, to see one or other of our sons slumped in the wingback chair next to David, dozing but still able to sense if he should move or become distressed. I’m deeply touched by this devotion.
I feel surprisingly refreshed in the morning and the house is buzzing with activity – children, animals, glowing fires and pots of tea. We have all gathered because David is dying, but I can clearly see that the situation is about as good as it can be given the circumstances. I can also see that Miriam is exhausted and I sense the burden of responsibility on her shoulders. However, she’s also being well supported by her brothers and their wives.
I have a break, taking some of the younger children on a long walk around the farm. Winter is coming, the trees are turning and the colours are dramatic. I take comfort from the change of seasons and the presence of these precious young people in my life.
Later that day, our cardiologist friend John and his wife Di arrive. I hadn’t phoned him but he has followed our movements by communicating with his colleagues at the hospital and knows we’re home. His presence has such a reassuring and calming effect on all of us. He gives us some useful advice on ways to manage David when he needs to be moved in and out of bed, and David obviously recognises John, although he is unable to acknowledge him.
We manage to get some extra morphine, but John can see that we’ll be struggling to keep David comfortable overnight. It’s too late in the day to rectify this, because the weekend duty pharmacy has already closed. We can, of course, take him into the Bathurst Hospital but that’s the very last thing we want. The situation will have to be desperate to subject him to another hospital admission.
In essence, the problem we’re facing is the lack of regional palliative care over the weekend. It’s crazy when you think about it – people can’t choose a convenient time to die, and this support mechanism needs to be in place twenty-four hours a day, seven days a week. We have the expertise and the willingness of our family members to support David beautifully during these last days of his life but we don’t have sufficient quantities of painkillers to keep him truly comfortable. He sleeps well enough, but is fidgety when awake because the pain keeps breaking through. He’s certainly not writhing in agony, but he could be more tranquil.
The day passes and again I sleep at David’s side, aware of the constant vigil through the night. Monday morning dawns and I wander into the garden to breathe the crisp, cold air. The palliative team is due to arrive before 9 am – we’ve been promised the first call-out of the day. They are to bring drugs and equipment, expertise and support. We eat breakfast followed by a flurry of tidying and organising. The relief when the vehicle arrives with two trained palliative care nurses is palpable. Miriam is shaking and tearful – the weight of the world has been lifted from her shoulders. Her response is understandable. Having trained as a midwife, she’s kept meticulous notes of everything that’s been done for her father. Every medication has been listed, with the dosage and time administered. Notes on his sleep, his toileting, his anxiety and restlessness. The team are impressed with how the family have managed and immediately organise medications for the next twenty-four hours. Through the port in his leg they give him an appropriate dose of morphine, the first proper dose in forty-eight hours. The change is rapid. At last, he’s at ease. He sighs into the pillow and we all sigh with him.
It’s a much more relaxed day, knowing that David’s pain is finally being managed. It’s the birthday of one of the grandchildren and a celebratory dinner is planned, with cake and some champagne for the adults. I spend most of my time fully dressed propped up on the bed with David, giving him a cuddle and chatting to whoever is ‘on duty’ for his care. I daydream that it could go on like this forever. David sleeping peacefully, me snugly beside him with all our family around. I worry a little because all of them have taken time off work to support us. How long will this last? I wish it could last forever.
Mid-afternoon I’m talking to Miriam, going over the events of the last few days. We’re very careful not to speak a single word about death or dying, knowing that even when in a coma a dying person can be acutely aware of every word spoken around them. It’s a relaxed chat – nothing intense – then suddenly David sits upright in the bed, wide-eyed and looking from Miriam to me. He speaks his first articulate sentence in almost seven days.
‘Do I look dead?’ he asks.
We’re stunned but I respond immediately, placing my hand over his.
‘You certainly do not look dead,’ I say. ‘Far from it.’
Slowly he drops back onto his pillow and closes his eyes peacefully. Satisfied.
Around dinner time, the spicy smell of home-cooked curry fills the house. The long dining room table is set and there are candles to help set the mood for a birthday party. Miriam suggests that I go and join the family for the first sitting of the meal – and when I’ve finished she’ll swap places with me. But barely two mouthfuls into the meal, I am aware of footsteps running down the hallway towards the kitchen. Wondering what’s going on, I leave the table and find Miriam and Lynne in an intense huddle in the kitchen.
‘What’s up?’ I ask.
‘Dad’s breathing has changed,’ Miriam says.
Back in the bedroom I get as close to David on the bed as possible. We’re joined by everyone, the half-served birthday meal left uneaten on the table.
His breathing is intermittent. A rattle of breath, in short bursts. We all know what this means and we surround him. Toddlers, teenagers, a babe in arms. We lean towards him, taking every single breath with him. Watching and listening until suddenly everything stops. No more breath.
The combined howl of shock and grief is overwhelming. I look steadily at David, who’s perfectly still, but I’m also aware of the keening in the room. It goes on; they touch his face, his hands. They stroke him and cry.
Someone – I’m not sure who – whisks the small children away. They’ve never seen their parents like this before and common sense says it may be too much for them to comprehend. They return to the dining room table to finish their meal . . . thankfully the cat is not fond of curry.
I have no concept of time but eventually the crying slows and we just look around the room – at each other and at David. I’m brought a glass of wine. Drinks in hand, we make a toast. We’re completely drained, exhausted and heartbroken. Eventually the curry is reheated and plates handed around. We stay together in the room for hours – eating, talking, drinking and even singing happy birthday to the poor child, who’s utterly bushed.
My memories of that evening are blurred, of course. All I know is I wanted to stay in our bed, to sleep beside David and feel his presence, even in death. In any event, there are no more beds available in the house – every sofa and blow-up mattress is occupied. I cannot imagine being anywhere else but by his side. He died a few minutes after 8 pm but it was well past midnight by the time we turn out the lights. I recall a feeling of numbness. Nothingness. Somehow during the night, in my deep sleep, I forget.