The room was dark and quiet. My back was stiff. A sharp pain pinged between my shoulder blades due mainly to the angle at which I was holding my arm. Most nights, I slept on my side, on the lounge, which allowed me to reach across from where I was lying and rest my hand on Bren’s heart.

His breathing was laboured, but he was breathing. It was getting harder to know when he was conscious and not. I had been laying my hands on my husband to support him through his final days for most of my waking hours and the hours I was supposed to be asleep – over the last 48 hours. My soul ached. I couldn’t bear that he might slip away, and I wouldn’t be awake as he left.

We had been sleeping in the lounge room for months. Bren was on a recliner and slept in a supported sitting position – I was on the lounge. Palliative care supplied the recliner when my brave husband could no longer sleep in our bed because the tumours had made it too painful to lay flat on his back, side or stomach.

The kids had been sleeping on mattresses — on the floor with our dog Otis. They wanted to be closer to their Dad and me and had been with us in the lounge room for the last few nights. As my family slept, huddled together – crazy thoughts kept me awake. The grief counselling session with our palliative care counsellor played on my mind. Glenn was a kind man and facilitated the conversations we needed to have. Even so, sitting with my husband, talking about what to expect when and after he died was a painful discomfort I can’t explain.

We discussed what might happen in the days ahead, after Bren’s death, for the children and me. And how to best cope with my trauma and help the kids with theirs. He explained that grief was a long road and that we may not experience the worst of it immediately. He gently warned me I should be extra vigilant, especially regarding the kids, as the two-year milestone approached. I couldn’t imagine anything being worse than where we were now.

Glenn then asked Brendan what his main fear was. He had two. The first was the pain he would be in at the end. The second was the pain we would be in when he was gone. First, we could manage his medication. The second we could do nothing about.

We lived in a small, tight community. I know Bren took comfort in knowing that our family, friends and neighbours would continue to support us after his death as they had during his illness. It didn’t take his pain away. Not being here for us when we needed him most was his worst nightmare, but I think it bought him peace to know we had people around us to support us when he was gone.

Glenn took this opportunity to speak to me again – telling me to prepare for the fact that there may be a lot expected of me in likely and unlikely situations once Brendan died. And to know what and where my boundaries would be. Brendan looked at me and said, squeezing my hand, you only have two things to worry about when I’m gone. The kids. The rest will take care of themselves. I was incredibly grateful to him for relieving me of the responsibility and burden of worrying about anything other than our children. I was unsure how I would get the three of us through the days, weeks and years ahead – never mind do anything else.

Having grief counselling together before Bren died was strange — but it was important. It allowed us to leave nothing left unsaid. And Bren could talk about how he would like to die when the time came. He chose who he wanted with him and where he wanted to be — home. With the help of palliative care, I could ensure everything was how he wanted it to be.

Bren wanted simple: the four of us together, just like any other day, hanging out in the lounge room chatting while we watched a favourite movie or series on Netflix. Nothing loud or violent. Call the midwife had become a favourite.

He was happy for our family and friends to come and go to spend some time with him throughout his final days — but he wanted the house to be quiet and calm in his last hours. He had become sound-sensitive and couldn’t tolerate a lot of noise. We kept the television on low most of the time as soft background noise. It allowed him to feel like everything was normal.

I could do that for him. I could ensure he was comfortable and that things were as easy and stress-free as possible. I wanted him to experience a beautiful death.

In the still of the early morning, Baden coughed and rolled over as Otis stretched out and put his paws on Tyra’s shoulder. The restlessness bought me out of my thoughts. I was amazed they could sleep with all they were going through. And yet they did, and I felt grateful for that small mercy. I instinctively put my hand on Bren’s forehead to see if he was warm. He wasn’t. I went to the kitchen, grabbed a drink of water, and straightened his blankets before lying down again.

22/01/15: Bren — Taken 7 months after diagnosis.

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