These words have formed themselves in my head multiple times yet when it comes to physically writing them out, the absolute of me goes numb, I clam up and it’s as if the English dictionary is erased from my mind…
Death is a taboo. It is a word that holds significant meaning but also holds terror to the majority of us, whether the act be upon ourselves or our loved ones. Facing an illness like IPF for the past year, watching my Father decline and acting as his carer, it is impossible to ignore what lies ahead. You almost befriend it and there are questions. Inevitable truths that you feel you must be ready for so you can be braced for those final days. To be brutal, to die from respiratory illness is a devastating, traumatic and ultimately, hard way to go. Your lungs shut down and breathing will gradually become more and more difficult. In fact with IPF this isn’t something that happens in a weekend, it happens gradually as more scar tissue is formed. It’s just that there will be a time when infection takes hold and you no longer have the reserves in which to fight it. Treatment is pointless and instead it is ‘kinder’ to allow the body to naturally shut down.
Having faced endless exacerbation of his illness, my Father was terrified and quite rightly. I had watched as he struggled to maintain composure, I watched it as he fought for every tiny breath that he could muster as his lungs no longer had capacity. Oxygen therapy was a godsend but it was also a new form of anxiety. By his final months, being too far away from home filled him with dread that he might be ill prepared and run out. Every week he visited our local Hospice to the Day Centre where he was allowed a bit of respite from the house and was provided with endless support from Physiotherapists, Nurses, Doctor’s and all matter of people who fought to provide him with quality of life.
It was me who recognised the time had come. I came home from work, walking down the driveway and could see him sat up in the hospital bed. He was desperately beckoning me in. In the space of that day his breath was gone and it was clear there was no way in which I could calm him. There was no longer enough oxygen and his big blue eyes were desperate and pleading that his time had come. Only a few hours later our local GP confirmed this and informed us he had hours or days left to live. Everything was shutting down, his lungs had fought long enough and now they were ready to give up. In all honesty, he had given up the fight weeks before. This was an illness he had faced with true courage but unlike cancer there was no hope of treatment or recovery. He was always faced with the prospect of death.
What happened that weekend was difficult. It lasted just over two days. One of which was peaceful, calm and allowed distant relatives and friends to visit him and say goodbye. We kept a vigil by his bedside as the syringe driver kept him sedated and relieved of pain. We slept as a family in the same room, shared cherished memories, held his hand, cried and laughed whilst watching his favourite movies and listening to classical music. The second day however was a storm, a brute strength reminder that death isn’t straight forward and that this supposed ‘good death’ cannot exist. He became agitated and on countless occasions woke up, clawing at his sons in agony desperately battling for each breath. Only three words fell from his gasping lips. ‘Can’t breathe’. And the name of the local Hospice.
It had become clear on that first night that we were struggling. We were unable to provide him with medicine and instead had to rely on the local 111 system which meant battling phone calls with call centres pleading for them to send a Nurse out in which to administer more pain relief. An on call Doctor then tried everything in his power to get him admitted to the local Hospice but he was blocked, there were free beds but there was always something else that stopped him from going. Not enough Nurses, no transport, no Consultant willing to come in and finally the age old “he’s going to die as soon as he gets here, what’s the point?”
None of this was our choice, this was my Father’s. Months prior he had spoken repeatedly to the Staff at the Hospice trying to find peace that he would be admitted so the right support would be with him. He didn’t want to feel pain, he didn’t want to be awake and he just wanted to pass peacefully. The local Hospital couldn’t provide this and at no point were we guided by the alternative of what would happen should he be left at home. Now he was in the active process of suffocation, he was awake and knew exactly what was happening and his only words to us was that he was desperate to get to that safe place. But it wasn’t to be.
In the immediate aftermath of his death we couldn’t grieve. We were traumatised and angered. We weren’t a family that had been blessed with a ‘good death’. Instead we had been left abandoned watching in terror as he felt every ounce of his lungs shutting down. All my promises to him that this would not happen had washed away and there still is an incredible amount of guilt that lies in me wishing that maybe, somehow, I could or should have done more to let him die with dignity.
The same day he passed I sent an angry, hurting and emotional letter to the Hospice explaining what had happened. But in ways I needn’t have done so. His notes were clear. They could see what had happened. How we had fought to provide him with relief and that the Hospice was unwilling to actively help or support him through Death. I have spoken with local Doctor’s who have expressed dismay and upset that this happened in their community as well as coming across people who also had similar experiences.
Today I meet with the Hospice to raise our concerns. It would be foolish for me to place blame as inevitably there are occasions when life will kick you when you’re down. But as someone who is fighting for those with lung disease, I cannot turn a blind eye in self protection when there are so many more who will face the same fate. Of course, it is bigger than the Hospice. Why should a dying person be left with the 111 system that is stretched beyond belief? Why is there no transport available outside of the emergency system that can provide relief to families so that they can be admitted where they want to be when the time comes? Why, in this day and age, should one illness be more important than another so that they maintain priority in death whereas someone else is left to suffer?
My mind swirls with unanswered questions. One that will take time to raise and one that hurts me deeply as it flashes those pictures of my dying Father in my mind. But today is the beginning. Today I want to start the conversation with those are in charge that this is prevented, that if the community supports them, they in turn have a duty of care to every single person who does so. I want this to be the beginning of the end of the failings for those are facing the hardest thing in life; Death.