Sue Newsome supported her Father during the last year of his life. In this blog she shares her thoughts and feelings from a carer’s perspective.
My Dad had suffered for a year after his stroke, his gradual deterioration was devastating for him. As his physical and cognitive ability deteriorated he became more frustrated at his dwindling independence. Dad told me he wanted to die many times in different ways throughout the last year of his life. He told me he just wanted “to lay down and die” and that he felt like he was ‘drowning’, as an illustration of his depression. Numerous times he told me he wanted to be with my Mum, who had died 15 years ago. Ironically, whilst I loved and cared for Dad and never wanted to lose him, at times I wanted him to get his wish and die. I had watched Dad, having fallen and sustained a Subarachnoid Haemorrhage, lying unconscious and unresponsive in resus. I breathed every breath with him and watched wondering if it would be his last. I would hope for an end to the hell he was in, and then feel guilty for wishing him dead.
Dad was stoic; he wasn’t giving up without a fight. He wouldn’t be defeated by delirium, fractured hips, a fractured clavicle, or 3 fractured ribs. The Grim Reaper challenged Dad to survive endless infections, falls and failing cognitive function. Dad and I had a strange sense of humour about death, and had discussed it before he was ill. He wanted to be buried “in a cardboard box at the bottom of the garden”. He would discuss his various ailments and I would reply with “You are 86 years old and you are still breathing!” This may sound cruel but I knew my Dad – this chivvied him along and I would get the reply, “I will never get any sympathy from you” and he would laugh. When Dad had occasional lucid moments in his dementia, I would be lulled into a false sense of security about his impending death. With every phone call I received my heart would stop and my mind would race, dreading the “your Dad has died” phone call. Dad died in stages and each loss was compounded.
Dad was a kind man – I think he knew he was dying. Five days before he died he sat up in bed and said “Thanks for being patient with me. I am sorry I am a nuisance”. I replied that he had been patient with me for 50 years! He then told me his memory was “shot” and we both laughed. He looked at his wedding photo and said “I wish we could all be together, one last time”. When Dad went into hospital for the final time I had no idea this was ‘it’. Dad had aspiration pneumonia and was struggling to breathe – the last roll of the dice. Dad could no longer articulate his thoughts and wishes but 2 days before he died he told me he was scared. From a man who had been a strong, nurturing Dad, this gave me the answer that I needed- Dad had had enough.
Staff were kind and respectful to Dad, we were afforded respect and compassion. I had not expected the care and empathy I received. I was consulted about Dad’s care and his bleak prognosis was discussed with me. I was involved in, and was supported to make, some very difficult decisions. I was clear that Dad needed and deserved, a pain-free and dignified death. Palliative sedation was agreed and support was given throughout. I was able to hold Dad in his final hours and allow him not to be scared.
Dad’s consultant showed me that Dad was not just someone else who had died and I was not another a grieving relative. He showed true compassion. As I sat holding Dad minutes after he had died, the consultant sat on the floor next to me. He held my hand and reassured me that we had made the correct decision, and crucially that it was a team decision, as I was feeling guilt that I had ended Dad’s life. That simple but very powerful act will stay with me forever – the act of being human and the power of touch we sometimes shy away from in healthcare , when used sensitively and respectfully, portrays more than words. The Health Care Assistant who helped me lay Dad out was also amazing, she helped me to support and care for Dad for the last time I would be able to. This must have been difficult for her but she cared for Dad and I with such dignity. She hugged me as I sobbed and laughed with me as I recalled memories. I was given time, despite being a busy ward, to grieve and say goodbye to Dad.
If there is a perfect example of how to afford someone at the end of their life respect and dignity, and showing relatives you are both a human being and a professional, my experience was it. I was never rushed, I spent 4 hours with Dad after he died, and was given time alone with him whilst also being supported. I have spoken to the Consultant twice since; he told me considered it to be his duty to care and support relatives. Is this the norm throughout healthcare? Dad deserved a dignified death and he received it. I am indebted to the staff who facilitated this, as I was able to care for my Dad’s final needs as he had cared for me.