I’d had a few bad days in a row and these days, I seem to cope with them by walking miles, just me and nature for company. It had been like that for the days prior to this and I’d walked miles, just to prove to myself, I could, and also to be outside where I always feel dementia is diluted . Inside it feels oppressive And all around me.
So last Tuesday I decided to give my legs a rest. As I woke the clock blinked 03.50 at me, but there would be no sunrise walk this morning. I’d had an incredible one the day before
I closed my eyes and simply relaxed until 6.
I’d been invited to a community dementia event in Leeds by Tim Sanders, Commisoning programme lead for Leeds Council. Pre Covid, I’d done several community events for him around the area according to my blogs and today was the first since Covid changed our lives
What I love about Tims events are the variety of people. There’s always someone with lived experience, a care partner, a Gp, someone from the memory clinic and local voluntary organisations.
The perfect mix and Tim always warns the professionals to use everyday language and bans technical lingo or abbreviations 👍⭐️
He’s also very good at meeting my needs and had sent me a detailed email of what, when and where everything was happening.
My head still wasn’t right, still hazy, but a different environment might help along with seeing different people.
The taxi arrived all chirpy and happy, saying the last time he’d picked me up he’d run out of petrol and just was glad we were going downhill …🤣 wish I remembered that as it must have been so funny 😂
The train to Hull was on time but once I reached Hull there seemed to be an awful lot of people milling around 😳….I checked the board and thankfully it wasn’t my train that had been cancelled but the Manchester train. However it did mean my train would be doubly full as all the Manchester folk would be going to Leeds to get a connection 🙄
As I boarded I felt so sorry for some people off on their hols via Manchester airport. There were many panicking, asking the time, the details, the fact they’d left in plenty of time and now they were pushed 🙈 One woman was on her own and she got chatting to another couple who apparently were going on the same flight – how random is that! So she was at least able to find playmates to help share the stress.
Everyone finally settled as we passed by the Humber
I got off at Garforth and Tim was on the platform to meet me. We had plenty of time as the event didn’t start for another hour, plenty of time for setting up……well…that’s how it should have been 🥴
As we arrived at the venue in Rothwell, there was no sign of life. All the doors were locked and the inside was in darkness 😳….maybe the caretaker was just running late….?
Tim calmly panicked, rang people and even rang the number on the wall outside, which actually took him to a betting shop 😳🤣 People started arriving, a woman who had spent all day apparently baking amazing cup cakes had arrived with a car load. Stall holders arrived with banners, laden with leaflets and still no one arrived 🙈
Eventually the audience started to arrive as well 🤯….suddenly an hour later and with two minutes before we were suppose to start, someone spotted movement inside the building….
“Ay up, is ‘ere…” shouted someone (well we are in Yorkshire!), amidst cheers and relief everyone piled in. It was suddenly like a military operation as the urn went on, chairs were laid out, tables for the stall holders and one for my books appeared.
I chatted to the audience to get out of the organised chaos behind me and 20 minutes later we started 🥵 and I was first up! 🤣
Before I stood, Tim apologised for keeping everyone, but it didn’t seem to worry them; they could have left but they all stayed waiting patiently. Pauline, the local ‘organiser of everything’ told people to pleeeease help themselves to the cuppa cakes in the interval and the woman had spent all day baking them and there’d be tea and coffee once the urn had heated up…..I couldn’t wait to see these amazing cup cakes 🤔
The chatter stopped, heart beats went back to normal and it was me up first. Because we’d started late I missed out a chunk in the hope that others would do the same. One bit I didn’t miss out was one of my explanations of dementia:
“We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t. That’s why I can speak and they can’t. I can type words far quicker than I can think and speak them because that part of my brain hasn’t been affected others can’t type but can speak better than me. If I didn’t have these words in front of me I’d be floundering. Typing is my escape from dementia.”
….and I’m so glad I didn’t as many came up to me afterwards saying they at last understood why people were all different….😍
Next up was the Gp who won and lost brownie points at various stages of his talk. But he explained what happened in his surgery if you go there with memory issues. He then added, quite rightly, as he was about to lose another brownie point, how sometimes it can be a case of “just feeling there’s something not quite right”. He stressed it’s not always dementia, it could be many other things so never be worried about coming to see us. He spoke of the need to attend the yearly annual reviews on offer
He ended by telling us some ‘breaking news’ as that very morning they’d just appointment their first Admiral Nurse – instant brownie point.
Sadly he lost many of his brownie points as the questions which followed showed how people didn’t know annual reviews existed and had never had one; complaints about not being able to get an appointment; even one chap who been diagnosed the week before lockdown who hasn’t been able to see his Gp since 😢…..none of that was surprising as our Gps are under as much pressure as the rest of the NHS…but still very sad…
The Gp had to dash off, but up next was Dr Alex from the Memory service.
What a refreshingly honest consultant. He said how you only know for sure if someone has had dementia through an autopsy when you die, so our work involves our expertise in making a good and as accurate ‘guess’ as we can with the details we see in front of us. He also stressed they were only commissioned to be a diagnosis service, so that’s why there were no follow ups with them. He was animated and smiley. No doom and gloom but didn’t hide the struggles either.
I chatted to him after and how I wish all Old age Consultant Psychiatrists were like him – loads of brownie points.
It must then have been time for a break as I started to flag and I realised I couldn’t have had a cuppa since I’d left home 😳….but also time to see these wonderful buns….
Well, we were spoilt for choice. The woman must adore baking and to do it all for free was so generous and wonderful of her. A small army of women were behind the counter serving teas and coffees and stressing:
“And help yourself to those wonderful cupcakes” I actually think no one would have dared not to have one 🤣
I hunted out this culinary wonder of a woman, hiding in the back, just to say thank you….☺️ then went to sit down and sold many books and had many chats with people before we started up again.
After a much needed break, Carers Leeds took to the floor, telling carers to take care of themselves and about all the services in their area, which seem to be many.
Then it was Pauline ‘organiser extraordinaire’ Hope.
She spoke of the legacy of someone that she’d taken up the mantle to ensure those affected by dementia had many things in the area to take part in.
Last but not least, it was the carer who poignantly told the story of himself and his wife Audrey. From the time they first met, to her last days living with dementia. He ended by reading a beautiful poem he’d written about the lonely nights without her, but ended by saying, but she’s always there in his heart…….
Well what a wonderful event eventually! It had all the right mix of people so Tim had done a wonderful job as usual. AND the buns were amazing
I was exhausted as I sat in Leeds station waiting for my train. But my taxi was waiting for me as I arrived in Beverley and the town cows had just finished their round of golf and were lazing and grazing on the 18th hole as we passed by finally on my way back home