Day 4 of 6……..heading to London………

So after the most amazing morning with Dougie MacMillan Hospice on Tuesday I headed south for Day 4 and the Alzheimers Society Conference. I’d missed the first day of this conference due to Dougie Mac asking me first.

The train from Stoke on Trent was merrily chugging to London and I was intending to get to the drinks reception for Ambassadors at 5.10…..I had loads of time………..but then……..the train came to a halt………… Nuneaton……….and didn’t move………..

Eventually the guard came through the carriage to say the sad news that there’d been a fatality on the line and all lines were blocked into London and that we’d be heavily delayed or maybe have to alight at Nuneaton and simply wait……..😳…….

Very sad for the family and friends of the person and nothing at all we could do about it so we just had to sit there and wait. Some people were getting very irate with the guard, who really couldn’t do anything about it. Felt really sorry for her. I might have been anxious if people were relying on me to be somewhere but they weren’t so I tried not to worry…….

However, as always things for me are never straight forward…..the guard the announced that we all had to get off as they were going back to Manchester 🤯…… what seems like ages passed and I went and hid in the loo for a little while just to get away from the crowds and panicky people. I then made a quick exit as I heard an announcement to tell everyone to go to a different platform… wasn’t over the tannoy though, it was someone shouting…….more chaos as everyone then just stood by another stationary train not quite knowing what to do. Apparently the driver was waiting for instructions from Virgin to say he could go to London. They could still use the 2 slow lines so a few trains were being allowed through.
However……..this train was already complete with waiting sitting passengers……soooooo people rammed on from our train but it was clearly going to be overcrowded. I managed to get a seat but not by the window so I spent the rest of the journey agitated and restless………..🙈

moral of the tale….DO NOT TRAVEL WITH ME!!!!

We finally arrived in Euston, by this time I didn’t care how late or what the time was as I’d decided I just couldn’t physically go to the evening event. All I wanted was to hibernate in my room. But when we headed towards the concourse at Euston it was clear there hadn’t been any trains out of Euston for hours. The noise of the crowds was overwhelming and I was thankful when I found the escalator down to the tube………forgetting it was now rush hour…..😱🤯😱…….so me and my fellow sardines trundled towards Vauxhall to find my hotel.🙈

Now I’ve stayed in this hotel a few times and knew that if I came out of the bus station exit I would be near – remember,  no phone so no apps to help me………..mmmmm….I did come out at the right exit but then went in the opposite direction……..luckily a nice man handing out the free papers turned me round and pointed me in the right direction…….😶

Soooooooo glad when I finally lay on my bed ……in silence……..finally had WiFi and was able to tell my daughters I was still alive and go online for a chat with the phone company, who told me there were still problems………..I havn’t even started to tell you about the event yet🤐

Day 4 is actually Day 2 of the Alzheimers society conference. It was being held at the Oval Cricket Ground in London again.

I was really hoping to get some hugs from playmates and team hugs – I was not disappointed, so many I can’t remember them all but these 3 were very special

And I saw Philly on her DEEP stand with Aimee Day and playmate Joy

Duncan Jones, Trustee, started off with housekeeping before handing over to Matt Hancock, the Secretary of State for Health and Social Care…..he told us how apparently this was where the first ever dementia friendly cricket game was played.

So, what do we do with dementia? He spoke of 3 areas, Prevention, Research, Social Perscribing.

He spoke of social prescribing and the arts with greater use of music and the arts. It was disappointing that he didn’t mention the emotional and practical help that people could also be prescribed and need when diagnosed and the need for the whole family to get help.

His speech was disappointing, full stop. Typical politicians speech, No mention of social care crisis, nothing new, just words.

Shelagh asked why dementia training in hospitals is woefully lacking. He started by mentioning the value of dementia friends….🙈🙈🙈🙈 Dementia Friends is ‘AWARENESS’, not training……..🤯🤯🤯🤯🤯

Not the start I was hoping for but one I should have probably expected.

Next up was the new Chief Policy and Research Officer, Fiona Carragher. She spoke of how the society is funding research of all dementias and on every level, prevention, early diagnosis, treatment and cure and care and technology.

The Research Network is 20 years old this conference and it’s the one part of the society that I always enjoy working with.

Lenny Shallcross, Executive Director of the World Dementia Council came next. He gave the global picture. His one quote about the Gay Human Rights issues which made me sit up and listen:

Change happened because people stood up”

Sadly none of the speakers were grasping my brain enough to stay focussed. My brain seems to be in need of new batteries today and I’m struggling to be enthused.

However, next up was playmate, Larry Gardiner along with 3 others talking about Working Together to build inclusive communities. Catherine Anderson, co founder of the Jo Cox Foundation spoke of the importance of the community. Jo Cox wanted to be an MP because how could anything they decide be reflective of society if the majority were male 👍 wonderful.

A strand of their work is trying to tackle loneliness – one conversation at a time.

That one was wonderful because it was saying what people were doing and not just talking words.

Playmate was speaking on behalf of the 3 Nations Dementia Group.
Larry has worked all over the world and has so many skills and values that he’s a new asset to the group. He showed a piccie of the current group, which was lovely to see and spoke of the amazing work they’re currently doing around human rights.

His lovely words about those of us living with dementia were:

We all live alone in our own brains’ – beautifully put Larry.

Sadly, now my batteries were running dangerously low, so I shut my ipad. However my batteries were given a sudden boost at lunch time when I ventured into the quiet area only to meet Glenys Petrie and playmate John Quinn from Australia. We had a lovely conversation. I’d never had the privilege of meeting them before but they’re over here before travelling back soon.

For a moment I came back to life, as how could I possibly not be recharged by these wonderful people….but I then stopped all typing

The afternoon was taken up with something but can’t remember what as I’m sat here tapping away on the train. One thing I do remember is hysterical laughter with Philly and Aimee and I can’t even remember why 🙄🤣😂🤣

Felt it was time for me to go before the rush hour started. And on the way out, who was coming up the stairs, but the lovely Nicci Gerrard, who, by chance, I’d be with tomorrow!
She was taking part in the end of conference panel and had just arrived. So after a hug and a piccie I left for the station.

Now to Bath for the penultimate day………..😴

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. 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.

10 thoughts on “Day 4 of 6……..heading to London………

  1. How many hours in your days Wendy?! I’m breathless just reading and imagining your journeying!

    Thanks for sharing all that you do. As said before, it is uplifting, inspirational and, above all, encouraging people like me to be proactive and positive in ‘tasting’ this good life to it’s utmost flavour! Keep us on our toes lovely lady!

    Liked by 1 person

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