Radical Acts of Love. Janie Brown

and hospices tend to be better staffed than medical units, and have team members who are specialised in end-of-life care. They both have less of an institutional atmosphere. People tend to go to a PCU for symptom management, such as pain or nausea, and then, once that’s under control, they can go home again or to a hospice. Most hospices have a policy of only admitting people who have a prognosis of three to six months.

      A faint flush of pink had settled in Daniel’s cheeks. The knowledge that help was tangible likely brought him some ease and consolation.

      ‘There’s a hospice quite near your house. You can bring things from home such as pictures for the walls and your own pillows and bedding. Lin and the kids could be there as much as they want, and they can even sleep over,’ I said. Daniel’s eyes were locked onto mine.

      Memories of countless families I had known flooded my mind. Little Sarah, who was four when her mom died in a hospice, brought offerings from home: a flower from the garden, a candy, a storybook. The hurt was evident in her wary glances and the dishevelled state of her mismatched clothes. Matthew, almost sixteen, who slumped in the chair by the window of his dad’s hospital room, baseball cap pulled down low, earbuds always in place. He exuded inaccessibility, but he never missed a day of the fifteen-day after-school vigil before his dad died.

      Daniel moved himself from the practical to the emotional. ‘Is it okay for the kids to see me dying? Would it traumatise them?’

      ‘It depends on whether the process is an easeful one or not. Most times the palliative care team can settle your symptoms, and you’d look to the kids like you were sleeping. It will be very sad for them, but not traumatic.’ I was aware of my change in emphasis, from ‘would’ to ‘will’, ushering Daniel closer to what was inevitable. He leaned forward slowly to pick up the glass of water on the table and took a couple of gulps. I waited while he took a tissue and wiped his mouth, then dropped the tissue into the wastepaper basket. When he lifted his eyes to mine, I continued.

      ‘In the unusual circumstance there is a symptom that’s difficult to control, or something sudden happens, then it is best for kids not to be there. That would be traumatic,’ I said.

      ‘Who decides?’ Daniel asked, with surprising stamina for what had become a lengthy conversation. My thoughts briefly turned to Emily in the waiting room. I felt grateful for her self-reliance that allowed me to talk to her dad without interruption.

      ‘The team at the hospice will guide you, but it would be good to talk with Lin about this too.’

      ‘What about after I’ve died? Can the kids see me then?’ Daniel asked.

      I reassured Daniel that children usually know whether or not they want to see the person who has died, and how long they want to stay in the room. I recommended that his wife Lin or someone close to the kids should be with them. Kids need to say goodbye just as much as adults do.

      ‘This might sound like a weird question.’ Daniel paused, then looked at me.

      ‘It’s okay,’ I said.

      ‘How am I going to know when I’m dying? Are you living one day, and dying the next?’

      ‘We live right up until the last breath, really, but there is a time when we enter the final phase of dying which usually lasts from a few hours to a few days. The body doesn’t want food or liquids any more, and the organs naturally shut down. You’ll be asleep more than awake, and you will likely know you are dying,’ I said.

      Daniel leaned back against the cushions of the couch and glanced behind him, out of the window, taking a break from the conversation.

      He turned back and I continued. ‘When Lin entered the last phase of childbirth, the pushing part, you were there, right? No matter how much determination she had, she couldn’t stop what was happening. Your daughters really birthed themselves,’ I said.

      Daniel’s eyes shone at the memory. ‘It was amazing to hold each of them for the first time.’

      When I told him my belief that just as the body knows how to birth itself, it also knows how to die, I saw the relief soften his face.

      ‘Death will happen when it happens,’ he nodded.

      I waited to see if there was more, or whether Daniel would close the conversation. He might have used up all his extra energy for the day, and he still had to drive home.

      His voice had become subdued. ‘I just hate all the pressure to have to will this cancer away with my mind. The stress comes from all those books Lin keeps leaving by my bed, the ones that tell me that my mind is stronger than the cancer. If I could do that, I would have already done it, right? Of course I want to live, but this cancer has got the better of me.’ He paused, as though an unbidden thought was pushing up against him. ‘This is not my fault is it, Janie, getting cancer?’

      ‘Of course it’s not your fault,’ I said, with a vehemence that surprised me. ‘Life deals us this stuff and then we have to handle it, and how we do that affects not just our own life but the lives of all the people we love, into the next generation and the next. If you can find compassion for yourself, Daniel, then your daughters will learn from you. Your dignity and self-respect will accompany them throughout their lives.’ I felt the warmth of emotion build up behind my eyes at the thought of his daughters growing up without this fine man.

      Daniel had perked up, sitting taller, as though his hope was being redefined. Instead of hoping for survival, he could hope for continued meaningful moments with his family, for as long as possible.

      ‘Perhaps we should check on Emily?’ Daniel suggested. I stood up and opened the door to the waiting room. Emily looked up expectantly.

      She entered the counselling room and plonked herself down on the couch close to her dad and looked at me with wide eyes.

      ‘What were you and Daddy talking about?’ she asked.

      I looked at Daniel to determine if he wanted to speak. He nodded at me to respond.

      ‘Your daddy and I were talking about what it’s like to be sick.’

      Emily looked up at her dad. His eyes were moist.

      ‘Do you know what’s going on with your daddy?’ I asked.

      ‘Yes, he has cancer, and he’s going to die,’ Emily said, matter-of-factly.

      I raised my eyes to the maple outside, to seek brief solace from the heartbreak of the moment, and I noticed the new tender leaves shivering in the April breeze. When I looked at Daniel, a plea for help radiated from his eyes.

      I took his cue and responded. ‘It will be very sad for you and your mommy, and for your sister, won’t it, when Daddy dies?’ I said. Choosing to be honest in a situation like this feels like jumping into an abyss.

      ‘Yes, it will,’ she said. ‘Daddy, I don’t want you to die.’

      She looked up at him and Daniel reached out with both arms and drew her in against his frail body. Witnessing the intimacy of father and daughter took me to my own father dying, and to all the daughters and sons who must say goodbye to parents too soon. I felt oddly comforted by remembering my father’s love and the deep ache of my own loss.

      Daniel whispered into Emily’s ear. ‘I’ll always love you, Em, no matter whether I’m here or not. Will you remember that?’ Her head acknowledged his question with a slight nod. Daniel continued, ‘I would move a mountain or drink the whole ocean or never eat another candy if it meant I could stay here and be your dad.’

      ‘Would you eat Muffy’s cat food?’ Emily looked up with a mischievous smile.

      ‘I most certainly would,’ he said.

      Emily smacked her lips together in satisfaction. ‘Good.’

      I leaned towards her. ‘Sometimes it can help to talk about the things you’re going to miss when Daddy dies, because they become the happy memories that can help you feel better when you’re sad,’ I said.

      Emily’s