Posted: 10 May 2017
10 years ago, with only experience of supporting people who have a learning disability or autism, I came to work for Skills for Care and had to learn about services for older people - just at the time my dad was diagnosed with the early stages of dementia himself.
Quite quickly I was asked to work on end of life care. I had vague ideas about what a ‘good death’ might be – mostly informed by the movies! Even as an outsider though it seemed obvious that if most people would prefer to die at home, but at least half of us die in hospital, then something was going wrong.
The problem seems to be knowing what the ‘right’ thing to do is – especially if the person is no longer able to decide for themselves, or communicate that choice.
With the medical advances available to us we are used to doing all we can to keep someone alive, but there’s a point where that is not possible or preferable, and so what is right becomes less clear – and a lot more scary.
For one thing, the other people who call that place home might have their own opinions about it becoming a place of care and death!
Dad was really clear that he wanted to live at home and die at home. He recalled how as a child he was in his parent’s bedroom as his own father died surrounded by his family – the same room that dad and his siblings had been born in; with the same women laying out the body who had acted as midwifes.
Dad needed increasing care so eventually we all moved in together. He had various health conditions but he was clear - he didn’t want any operations so there was no point having invasive tests. My husband and sons could see the distress that even a routine hospital appointment brought to him. With typical autistic pragmatism one of them put it like this:
With our brilliant GP we were able to make tough but pragmatic decisions based on adding ‘life to his days, not days to his life’. His creative personal assistants and his wonderful day centre meant dad was busy and active up to his last day.
We didn’t know we were doing ‘end of life care’ until that day - there was no ‘end of life care plan’, no formally recorded decisions, just a myriad of tiny comments and discussions while watching the news, reading about a friend, talking about life in Morrisons café, or in the loo!
Then the choice had to be made – try and get him to hospital or make him comfortable at home. In truth that decision had been made years before and I'm so so glad that I wasn’t considering it there and then for the first time.
The temptation to do anything that might give us a chance of one more game of dominoes or a few more goes at “car-e-oke” was strong but I knew the likelihood was that it would mean spending his last hours in an unfamiliar place with painful and confusing activity around him, or worse; alone.
Dad died within hours of that decision, in his own bed, with me and two district nurses with him and the hubbub of normal family life just outside the door - one of his beloved grandsons doing real time updates for dad’s Facebook friends. Those who had helped care for him could sit with his body that night and take our time to come to terms with it. He was 91, he’d had a full life, served his country and lived long enough to delight in modern advances like YouTube and ‘all you can eat help yourself’ ketchup in McDonalds. His death was sad as he still had the capacity to enjoy life but no tragedy as he also spent a lot of time in confusion or mild discomfort.
Caring for him at home was not a sacrifice for us – he helped me with my job and it suited us as a family (though it wouldn’t suit everybody). But neither was it some rosy glowing picture of sweet contentment. We all got cross with each other at times; the strain of being permanently ‘on call’ is hard to live with and – as it turns out - even harder to get used to living without.
There is no ‘right thing to do’ - we tried our best and muddled along in our own perfectly imperfect way. He was clear that his priority was to be ‘at home with the family’ so that meant we all had to compromise; for example he chose when to go to bed but since he needed me to help him get ready for bed we agreed I could choose when to do that!
His death was so sudden that in the end the comforting words I’d been rehearsing for several years were not voiced, there were no goodbyes, but neither was there much pain or distress – just a quiet, natural end to his life.
Ernie Reynolds 1925 – 2017.
If you’re interested in learning more about end of life care, Skills for Care has a range of resources that can help you and your workforce develop your skills and knowledge.