End of Life Conference – Advanced Care Planning

Last Friday saw me at a very local conference – held at Beverley Race course, which is  10 minutes from my village – perfect venue😊

I’d been asked to attend by Janet Woodhouse and give a 15 minute talk on the value of talking and the role the hospice can play for people with Young Onset.

It was a lovely morning and the best thing was that Sarah could come with me. Sarah is a nurse in a hospice so this conference was of interest to her as well.
It was such a nice change to set off 10 minutes before we were due there and a very novel experience…..

The view from the racecourse across the Westwood was stunning…


We arrived to be greeted by Jane, a nurse at Dove House Hospice, who I’d be doing a double act with later. AND of course, the first thing to get in order was a cuppa…or two……..😊
There was even breakfast on a stick, which seemed to be going down well!

There were many different healthcare staff there, from nurses, GPs, district nurses, macmillan nurses to name a few….

The conference started with a play. It was a true story of a man diagnosed with pancreatic cancer and simply had 33 days from diagnosis before he died and the story was told by he and his wife.
It was a patient, carer experience of end of life to help people think from the start……It was called ‘Homeward Bound’ and has played all over the country.

The aim of the story was to inspire more thought in the healthcare settings we find ourselves. Their experience had been littered with poor thought and lack of compassion.

They detailed the experience – the good and the bad to show how healthcare professionals can make or break those difficult days.
For staff it was just another day on shift but for the patient – they were entering the last stages of life.

It showed how time becomes much more important and precious when life is coming to an end. At the end of life, time ceases to become a concept …

‘Minutes race……. and precious days disappear all too quickly’.

It is hoped that when shown to a healthcare audience, it will help them reflect on what is important to people at the end of their life.

We had an interesting discussion round the table afterwards – the healthcare staff were all moved by the play, but although I found it moving, I was just glad it highlighted all the thoughtless behaviour we have to endure in a myriad of healthcare settings – bit like my experience in Hull Royal.
It was then the turn of me and Jane.

For once I had no need to bring the photo of me and my daughters as one of them was with me!
For once I had no need to bring the photo of me and my daughters as one of them was with me!

There were 4 workshops for all the staff to attend in groups of 30, so we had to do ours 4 times. I’ve been full of cold this past fortnight and although I’m now on the mend, I kept coughing through my bit, but I managed it all eventually.
I spoke about the importance of the language used by healthcare staff and the need to change the public’s perception of what a hospice has to offer. For most the word ‘hospice’ means somewhere to die, yet they have the perfect skills to support and guide people from diagnosis and at various stages through dementia.
I ended by talking about the importance of talking:

My daughters each had their own opinion on what I may or may not have wanted. imagine the sadness I would have caused in my death that I couldn’t put right……if we hadn’t TALKED.”

Before we knew it the morning was over and it was lunchtime, but the day had got the better of me. We had planned to stay the whole day but the mind and body wasn’t willing so we headed off home after saying our farewells.

It was a different but very useful conference and hopefully I sowed a few seeds of thought……

I kept getting distracted as it's not every day I can watch the town cows meandering through the race course.........
I kept getting distracted as it’s not every day I can watch the town cows meandering through the race course………

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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