A community event in Leeds…

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

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.

30 thoughts on “A community event in Leeds…

    1. Thank you for your wonderful review of the Dementia Information Event. This means so much to me as the planning was worth it and I got positive comments on the day. You were wonderful, a service in Leeds want to invite you to their event. All best wishes

      Liked by 3 people

  1. Golfing cows!! Thank goodness your fairy light of a great sense of humor is still lit! Thank you as always for your wonderful posts. Katie in Colorado

    Liked by 2 people

  2. Wendy, your explanation about Fairy lights in the brain, was very enlightening. I am thankful for you and how you are sharing so much information about dementia. Blessings to you.

    Liked by 2 people

  3. “please help themselves to the cuppa cakes in the interval” I asked myself, “Is that what they call cupcakes in England? How fitting!” I actually prefer “cuppa cakes”. 💚 from California.

    Liked by 2 people

  4. I love the descriptions you give us of what happened before….and during the meeting …As I think I’ve said I do not have dementia but used to be a warden in a sheltered housing scheme in Bath and had quite a number of tenants who had variations of Dementia, oh how I wished I had had the information I pick up almost every day reading your accounts…things have certainly changed if somewhat slowly,,…over the last 30 years…..now it’s me who seems to be getting increasingly forgetful!! But I put it down to age…..I hope !!!
    Did you ever find out why there was such a delay in opening up the venue, it was really very wrong and could have been disastrous if it had been a wild wet morning with so many people trying to get in,,,,,Hope you’ve had a bit of a rest today and tomorrow morning you will be up bright and early for your early morning trundle……God Bless. and Thank You

    Liked by 2 people

    1. I’m still looking into why there was a delay. There was a pub across the road and I was on the verge of asking them if they’d like to host a dementia event and gain some extra customers !

      Liked by 3 people

  5. Thank you again for coming to speak Wendy. As always, you helped people understand and you made us smile as well. It was lovely to be out and about again, working as a team, and spreading the word.

    To be fair to our GP speaker, I thought his talk was very clear and friendly about what to expect if you go to your GP. I’m glad he explained that people are entitled to an annual review. If he hadn’t said it, those people in the audience wouldn’t have known their rights. He also responded well to being put on the spot, which is difficult at a public event.

    I do appreciate your honesty though. Improving annual reviews is one of the six priorities in our Leeds dementia strategy, so it’s something we’ve identified for the whole of Leeds.

    Liked by 3 people

  6. Thank you for your wonderful and insightful talk. I thoroughly enjoyed listening to your story but certainly felt the pressure following on from you. Thank you also for your brownie points. I really do want to be there for my patients but I know we often fall short. Hopefully, we can encourage more Doctors to chose GP and begin to provide the service we want to deliver.

    Liked by 3 people

    1. How kind of you to comment! Gps are under so much pressure at the moment through no fault of their own, and we certainly do need more doctors to choose general practice. Keep doing what you’re doing 🤗x

      Liked by 2 people

  7. The “fairy lights” description always impresses me. So helpful to visualize! I’m glad you included it for anyone new. Cheers!

    Liked by 2 people

  8. This is a great report of what sounds like a great event.
    Wendy I love your string of fairy lights analogy.
    I guess all (or most?) NHS Memory Clinics are only for diagnosis … but why aren’t we told this instead of left feeling as if we’ve been cast adrift or dropped of a cliff. Perhaps we were unlucky in the psychiatrist my husband saw.
    I wonder if it’s the same for other incurable progressive diseases such as MS and MND? (In a documentary about Rob Burrows, a former Rugby League player with MND, it showed him having a meeting with an substantial multi-disciplinary NHS team, and I remember feeling quite upset by that.)
    I learnt about the GP annual review sometime last year; four years into my husband’s dementia diagnosis. He was called in for his first one earlier this year … but the letter didn’t really explain this so I thought it was a general health review. After I realised, during the appointment, I went home and made some notes for the GP for my husband’s records.
    I have also been contacted by the GP recently about a carer’s health review. This is a first for me so I don’t know if it’s a new thing, and I suppose it possibly applies to all carers.

    Liked by 2 people

  9. Its still 2nd July In Gloucestershire but Ive just realised what Ive missed (and gained big time) from being a guest of Bristol Southmead NHS for 6 days till last Sun eve (inc my b’day) following a fall or caused by one + TBI intubated induced coma the works. Need a road map out! but nothing hank you, M

    Liked by 1 person

  10. I wonder why it’s stated that you can’t tell if someone had Alzheimer’s until after they die and you do an autopsy of their brain. My husband was diagnosed via the results of an MRI of his brain stem where they could see the changes that had begun and they recognized them as Alzheimer’s related. He’s still alive and although the disease is progressing, I still have him with me and for me that’s all that counts.

    Liked by 1 person

    1. Yes, it’s the categorical affirmation they can’t provide. They look for certain classic signs on MRI’s etc but unlike cancer, for example, where they can categorically say it’s cancer, they can only say, ‘this looks like what we expect to see in someone with dementia…that’s how little we know about the brain and why so much research is still needed 😊

      Liked by 1 person

      1. Ah so… and because everyone is different, there are no real rules to the progress of the disease. There’s just general guidance. Stay strong… hugs to you…

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.