So yesterday was an early morning trundle to York St John Uni to speak to Occupational Therapy Students……students are my favourite species as they can change the way dementia is perceived and people treated in the future….they don’t realise the power they have to make change happen….
I was asked back in June by Alison Wadey, Subject Director for Occupational Therapy at St Johns. However, I had a minor panic when I got back from Italy as I hadn’t heard any more from her. I emailed but no response so I didn’t know if it had been cancelled or simply forgotten about. I took to my dear ally Twitter and tweeted St Johns Uni asking them to contact her. Within minutes Twitter replied as did Alison and all was sorted.
POLITE NOTE to those inviting us to take part in anything – pleeeease keep in touch. You probably don’t mean to ,but we have dementia, after all. If it’s months ahead, just a quick email every now and then, or however you’re contacting us to keep in touch…..but definitely the month and week before. I could have just cancelled; my daughters would have recommended that, but I was talking to students….it wasn’t their fault. Also I’d bought my ticket so getting the money back would have been a nightmare……..anyway I went ahead.
A 6am taxi pick up meant another dark trundle. No piccies of the Humber as I don’t think I’ve seen it for weeks as its always been dark!….a cold and rainy platform greeted me at Beverley but a bonus, for once, was that the Hull train before mine was running late so I hopped on that to Hull, in case it had a knock on effect on mine.
Turns out it did as the York train was also delayed 🙈….and the poor Manchester folk had their train cancelled🤯
However, it eventually ambled into the station, the guard apologising ‘cos of a faulty door, which ‘we think we’ve fixed’…😳….it was one of the ancient trains…….🤐
I’d been given 90 minutes for my session with the students….I could have had up to 3 but my head wouldn’t have coped with that. I’ve done 90 minutes with nurses before, so spent the day before adding, adapting and updating that talk.
Alison was meeting me at a given place and had to take me to HR first to sort passport and the dreaded paperwork. HR had asked that I come in beforehand, but A) I would never have found it, B) I don’t live in York and C) why do some Universities make it soooooo difficult for people with dementia to be involved….?🤐🤨🙈😔
Back to the journey……although York is only about 25 miles away, it is rubbish to get to by public transport. I’d plumped for the train with it being silly oclock but wished I’d gone by the bus I catch to Minds and Voices. It’s cheaper by bus and quicker and a nicer view. But because I wasn’t paying and it would be dark, I’d decided in my wisdom to go by train. It took 1.5hrs, stopping at every place possible en route…..but at least I got to type. It was dark, it was foggy so at least I wasn’t missing the view of the Wolds.
As the world began to wake my eyes were glued to the mist casting a veil over the fields
I’m rambling, ………🙄………
Anyway we arrived in York…..late…..luckily for me it didn’t matter as I’d left lots of time but some people were heading for connections and were quite frantic…….
I ambled down to York St John, passing the river on my way and taking a moment to watch the rowers try and find a straight line….
and eventually found what looked like the right building at the Uni from my photograph and Ally soon came along to greet me. We ambled upstairs……and then down again, as we both realised I had to take my passport to HR…..🙄…..They saw it, I signed to say they’d seen it, we left…….surely there could be an easier way for people with dementia to be involved 🤔
By the time we got back upstairs again, the room was filling with lovely students. Some staff had also come.
It was being filmed for those that couldn’t make it.
I rambled for my 90 minutes……talking about this that and everything including…….
“With dementia, if you’re encouraged ‘to do’ that ‘doing’ helps fight dementia for that day. I’m not saying it’s easy. There’s nothing more comforting with dementia than sitting with your eyes closed but that’s dementia lulling you into that false sense of comfort. It happens to me all the time. But when I just sit, and close my eyes, within no time at all I can feel dementia seeping into my brain. I always say I’d rather die of exhaustion than dementia and it always makes me sad to see people just sitting for any length of time.”
I also told them never to give up on themselves, others will do that for you, so let them get on with it. You never know what you can achieve unless you try…….
I showed 4 slides around perceptions – the only slides I ever show if anyd only to break up me talking…..which Prof Jan Oyebode came me permission to show and looks at dementia from both sides. For example, the resident who shouts and shoves staff out of the way when she’s up early……who really is simply getting up at the time she used to get up for work and is trying to find the way out and coming across staff trying to stop her……
At the end of my 90 minutes they could ask me any questions – I always say, ‘no question out of bounds’……and they asked many. obviously I wasn’t typing but I remember their thoughtful smiley faces – I talked a lot about the importance of their smiley face…….
One asked if the room we were in was appropriate for a practice room. I hadn’t realised it was set up as a kitchen as everything was white and I don’t find white a good colour, the same as black. But small changes would make it perfect. Coloured kettle, accessories, pictures on the cupboards, different coloured door handles…..so simple.
The time came for me to go……..many of the students bought my book and best of all they agreed to a piccie…….as I was leaving I told them that once they were qualified and out in the big wide world visiting patients…they may find they’re visiting me one day…..don’t forget the smiley face…….
Students…..our hope for a different, better future for people living with dementia………❤️