This post is written with love and care for those directly dealing with IPF or a similar progressive and terminal illness. It contains quite sensitive and upsetting material.
Often, I find myself recounting memories that understandably are framed front and centre in my mind. In the immediate aftermath of my Father’s death the memories are the same. The final days. The final images of him. Sometimes I find it easy to describe them, but as soon as pen comes to paper it becomes difficult to explain. As I walk the dog each night I find a new way of getting it all out my head but once I sit down, it’s all gone.
For my Father, it was a relatively quick passing. From the point of the GP informing us his body was shutting down to his last breath was just over forty-eight hours. His lungs were failing and slowly his organs would follow. Most of that weekend he was sedated, asleep and unaware but there were unfortunately moments where he was conscious, distressed and aware that this was his time. He showed signs of dementia in that he was confused yet we couldn’t tell if it was the cocktail of drugs to calm him, the lack of oxygen or the pure anguish he was facing.
But it wasn’t all trauma. In fact, the whole weekend was a mixture of emotions. One minute we’d be sobbing and the next laughing as we recalled old memories. The Friday night me and my Mother were sat late at night in the Tesco pharmacy feeling incredible guilt as we both admitted that it felt like he was already gone. I guess we were bracing ourselves for the overwhelming grief that would follow. His final full day happened to be Father’s Day. One minute I would be sat staring into the garden feeling completely numb, and the next I was blubbering as I wrote in his card to let go, that it was okay and his time had come.
Over the final night I slept, we all did except for my eldest brother who kept a vigil by his bedside to ensure he stayed sedated. In the early hours of Monday morning he woke me with two words. It’s time. Death is something I don’t think anyone can comprehend until they’ve come face to face with it. It’s impossible to bury your head in the sand when you’ve seen your loved one take their final breaths. The image is something both haunting and comforting. Haunting in that it’s a sight you can never be prepared for, but comforting in that you were witnessing as they left this precious space.
It was only as I walked into the room that I realised how frail he had become. As I sat holding his hand I could count every rib through the fragile layer of skin that was such an unusual colour, one that I can hardly describe. His wide blue eyes were starting to droop as he watched my Mother weep. The on-call Nurse happened to walk in and took away his oxygen cannula that I had become so used to seeing. His breaths were irregular and it felt as if I could see into his chest as his heart stopped.
Little did I know it would be that exact memory that would stay with me. That image of his face, his long drawn out face as he gasped and then stopped. For so long it felt surreal and it sometimes still does. I had been by his side on this whole journey of IPF and now it was over. He was gone. Any spare moment I find my mind wander and it goes back to that five minutes of watching him die. I recall him telling me that you can tell when a person has gone because the soul in their eyes leaves them and they become a shell. Now I know what he meant.
I walked through to where the two oxygen concentrators were still plugged in. They were still humming as they pumped out oxygen into the long line of pipe that for over a year had been helping my Father stay mobile. It’s a sound you get used to, it becomes a comfort to walk through the door, switch the machine on to the awful bleep and then to hear the continuous warble as they vibrate against the wooden floor. That endless need to ensure there is always oxygen in some form. And just like that, I turned them off. The house was now truly quiet. It’s still something I haven’t gotten used to.