Category Archives: travel

Travelling to Scotland………

Now how do I catch a train…..? Remind me again……

Last week saw my first trundle on a train for weeks due to the Christmas break. I knew it would be a strange one. I knew it would take concentration…….a difficult process at this time of year.

I was sooooo glad I’d set reminders and done some things before Christmas as the process had become a mystery to me along with many other things during the long quiet break.

A reminder to book a taxi appeared – crikey, I’d even forgotten that…..it even reminded me to see if my daughter was free to pick me up🙄

My tickets had been booked and collected before Christmas so they were also waiting for me, thank goodness. Sticking my hand out to stop the train still makes me chuckle, but it’s what I do for the bus. So it just seemed normal for me……..

It’s been difficult getting ‘back to normal’…..relearning normality. Just getting up early has been difficult. You might say, well yes, we all find it difficult to get up after a break from work….but it’s a different ‘difficult’. I’m not trying to say we’re a special case, I’m just trying to highlight the difference.

Dementia is very clever at giving us a new normality if we’re not careful. A relaxing, gentle doing nothing normal……and before we know it, dementia has taken hold, so I had to snap out of the haven of peace.

So yesterday was my second train journey of the year…..this time to Stirling University in Scotland. Once again, everything had been sorted before the Christmas break. Tickets were waiting for me as I turned the page to this week, along with the printed emails I needed to say who what when and where……

I had to rely on the fact that I had everything sorted…..had to trust myself, which is very difficult at times….

We can be deceptively confident in the responses we give and thoughts we think, but sadly they’re often false, even though to us they’re true. I remember being confident in saying something to my daughters recently, but they pointed out in their gentle way that I’d got it wrong. I have to trust that what they say is right but it can make you feel very confused and sad. But before Christmas, I was in the routine of ‘preparing’ so I had little choice but to trust I’d done everything…..🤞

The most difficult bit was medication…….medication for 4 days….😳 I normally just have them all set out in the weekly travel box, but this was when I took everything in a morning🤯 now I have evening and during the day ones too. I hunted around to see what I could find, and then I came across some different tablet boxes……me thinks I must have had this issue before and bought these……See! I was so organised I didn’t even know I was organised🤣😂

Anyway,  the journey started off with beautiful sunshine across the Humber….

I was so looking forward to this journey as the East Coast trundle to Edinburgh is a beautiful one taking in lots of the coast.

It was very weird going through York. I always use to stop or start there😳 but then I could sit back and enjoy the views…..

I’m sure I’ve been on this train journey many times but the views never cease to make me smile

Grant Gibson from the Uni had agreed to meet me at Stirling station, and I’d txt him at the start …..just to check he’d be there so I could relax even more. He appeared as promised and drove me to the hotel that would be my home for the next 2 mights. At reception one of the students was also just arriving and had spent her journey reading my book☺️

After a cuppa tea and a settle into my room. I just had to go for a wander and take in the amazing scenery around the campus…..


The loch in the middle of the campus with snow covered hills in the distance…

and finally, a lovely sunset outside ny room….

Soooo looking forward to meeting the students tomorrow….but now after taking well  over 7 hours to get here…..I just want to snooze………💤

Unfurling of the Great Yorkshire Banners…….

So yesterday I was due at the research network arm of the Alzheimers Society for the second day of their conference, however, I had a change of heart……..
The night before was the evening meal at The Oval. I usually decline the meal and sit happily unwinding in my room with a tuna sandwich…….but yesterday so many people had come up to me and asked if I’d be there that I felt I should give it a go…..

It wasn’t until I got there and one of the society staff asked if I’d be in York on Wednesday and I felt so guilty saying no, I’d be in London instead. Over night I decided that I should and want to be in York with my playmates so decision made, then panic stricken for letting the research network down🙈….I really need 2 of me………☹️

The wonderful A Team from Yorkshire were there to look after me for the evening meal so I was in safe hands as were my playmates from the 3 Nations. I’d known some sad news early in the day and it was announced at the meal last night. The news that Matt Murray was leaving the society.

Matt was the first person I ever met in person from the society when I saw the button on the web site to ‘Be Involved’. It was then that I joined the research network volunteers and our wonderful friendship began. I trusted Matt. He allowed me to break all rules and become a monitor ahead of the usual time simply because time is an unknown quantity for someone with dementia. He always said what he was going to do, when he was going to do it and always responded quickly to emails.

Everyone moves on, and Matt is a wonderful catch for any organisation but I will miss him dreadfully and I’ll always have special memories of Matt.

I only lasted the first course before the noise and buzzing bees of conversations around me became too much and I left them to it……

So the next morning I woke and started working out my new plan. I txt Sandra to say why I wouldn’t be there and then I went and checked out and saw people in the breakfast room so was able to apologise in person……

I also had to txt Gemma so she wouldn’t pick me up in the evening!!

I had to be there for midday…..I realised when I eventually got on the train that I’d rushed the planning and didn’t find the best train, but hey ho……too late ……..

I arrived at the station to find the Tony Husband, Ian Beesley and Yorkshire tea voice man Ian McMillan setting everything up along with Philly, Rachael and Damian from Innovations in Dementia – all of whom have made this event possible…………

Philly earned her first brownie point of the day by immediately going to get me a cuppa tea……….as Virgin train didn’t have enough staff for a trolley service on the train, so I was gasping!

The media arrived in the form of the local BBC and the radio was there I think too……marvellous …….my playmates were wonderful at speaking up.

A brass band of children arrived to play a fanfare

before the unfurling and then several playmates stepped forward to reveal the wonderful banners created by an amazing designer with wonderful images by famous cartoonist Tony Husband. Equally famous Ian Macmillan read out 2 amazing poem and then the reveal happened. What amazing banners which just say it all……..


The negative side of travelling ….

The equally famous (have to treat them all fairly🤣) Ian Beesley said:

‘“ unfurling the banner cos we’re unfurling the future” wonderful……❤


And the positive side…

Many photos were taken and so many members of the public came over to ask what we were up to and the children in the band were amazing. The local BBC and newspaper were also there .


Minds and Voices with photographer Ian Beesley…

Once everything was over we had one last photo en masse in front of the banners. The banners show one negative image and one positive image and what travel means to us folk from a Yorkshire viewpoint….transport and our Rights…………

We had a coach back to Priory Street, lunch and a debrief………we were all on a high as it had been such a success. Yellow ‘I want to speak’ cards were up all over the place in the room.

And what a wonderful booklet to come out of this amazing experience for us all – full of cartoons, photos, poems and stories – superstars⭐


With our wonderfully smiley Rita on the cover….❤

Travel is so important to me, yet is so stressful. Yet small changes can make it possible.I’m so glad I changed my plan today because all our words of the past 18 months, today became an ACTION of our own…

Our Right to get Out and About…..

Yesterday I was in York. I’d snuck this in last minute as I’d cancelled a meeting in London due to being there the following day as well, but couldn’t resist adding this extra one in……🙄

A while ago there had been a similar meeting in York of 3 DEEP groups from Bradford, Scarborough and my playmates from Minds and Voices – all people living with dementia. Last time I’d met Ian Macmillan, the voice behind Yorkshire tea, but this time it would be Ian Beesley, superstar photographer and Tony Hubbard, famous cartoonist.

The aim was to design a traditional banner for us in the style of Trades Union about our Right to get out and about.

It was a beautiful day as the taxi took me past the Westwood and yesterday the town cows were finally let out to roam for the duration of the summer. They must have been very excited to be out after being inside the whole winter………

And the view from the bus as we trundled through the Wolds looked equally lovely.

I arrived to find Philly setting up and the tea had just arrived👍 It was soooo nice just to be a playmate today and  share the pressure of the day.
Think I was probably on my 3rd cuppa when playmates from Minds and Voices started to arrive, followed by the Scarborough gang and the folk Bradford. Photographer Ian Beesely soon arrived followed by Tony Hubbard the cartoonist…..

Some of the funding for this project has come from the IDEAL project at Exeter University….and started last year when travelling was becoming a real issue

Ian and Tony then took over the session and mentioned that their third musketeer, Ian McMillan (the Voice behind Yorkshire tea)was at a pie eating competition😂🤣😂🤣………..

We were here today to discuss ideas about the banner and then about the unfurling of the banner at a prominent place in York during Dementia Action Week………

The banner will be ‘The RIGHT to a grand day out” – 2 meters wide and 3 meters high😳. It will hopefully be double sided. There will be smaller versions, postcards and a digital version…….

Ian, Ian and Tony have done the ground work and brought a rough outline today for us to comment on. One side will deal with the negative aspects of getting around and the other side will be the positives…..

At the top we’ll have YORKSHIRE DEEP with a shield with a flourishing rose on the one side and a withered rose on the other……4 cartoon images by Tony in each corner of traffic  jam, stuffed bus etc……….This is a mock up and starter for 10 but by no means the finished article..

We immediately said how ‘Yorkshire DEEP’ should be replaced by ‘Dementia Voices’

Front of the banner will be positive images and have Yorkshire images…… for example, Yorkshire pudding and ice cream, Yorkshire tea and a pint of beer……….🤣😂🤣……………but other ideas were flowing from the group.

The railway lines on the front are easy to navigate, whereas the lines on the back are confusing……

There was loads of ideas……..and disagreements……and discussion……

We then went round discussing the venue for the unfurling………York Station, York Minster or National Railway Museum….or all three……….and I said we need Radio York, York press and Yorkshire Post, BBC there…..Ian is on the case…..

Weds 23rd May is unfurling day……during Dementia Action week and will be in York…

We were then showed a photo of 2 miners…..and I asked if it was Tony and Ian’s Calendar pose🤣….they even posed to show the similarity….🤣

He then read out Ian Mcmillan’s lovely poem that he’s written for us …..

And then showed us a copy of the idea for the chat book in the format of the old type Yorkshire magazine…….and our Rita would be on the front.

It would contain lots of the photos we had taken during our day our last year and the cartoons that Tony created.

We need to include a piece about each individual project that each individual group did….Scarborough and the Blue Badge scheme. Bradford and bus timetables, and Minds and Voices and our train travel………

We were all beginning to flag so time for lunch……..or for me….a cuppa tea…..

After lunch there were 3 things on offer – talking to Tony the cartoonist about any issues we’d had travelling, talking to Ian about any more thoughts on the banner and talking to Philly about Dementia Diaries……I really can’t do decisions, I need direction, so joined Philly to promote the diaries and we ended up with 4 possible new members, including my friend Liz from Scarborough.

Because I don’t use the phone, I usually send Philly my words and she records for me. Today, Philly allowed people to have a go on her phone and because she set it all up on speaker and dialled the number I could record as that’s what me and my daughters do if they have to make a call on my mobile – they have it on speaker.

They’re trying to get the diaries global so that people across the world can record their message. Tomo, who I met from Japan is joining and there’s a university in America which is really keen to bring the diaries to the States! – brilliant.

It was a really good day once again, but very tiring……couldn’t resist this last piccie as I was waiting for my bus near the station though………

My Journey to the Publishers……..🙄

OK, so the title of this blog includes the dreaded word ‘journey’……so you know this won’t end good🙈. I did think of simply showing emojis instead of text….if I had it would have gone something like this……

😱 😳 🙄 🙈 😫 😨 😰 🤐

So we could just leave it at that but then I wouldn’t get my keyboard practise for the day.

So here comes the txt😊.

I’d been really looking forward to last Thursday as I was due to visit all the lovely people at Bloomsbury Publishers. They originally asked me down to take staff through a Dementia Friends session but then other stuff had cropped up and we were meeting Alexis and others a couple of hours before to catch up on all their plans. Their was restricted seating for the Dementia friends session but I’d been told it had sold out and to expect about 75 people🙃

A few weeks before the date I’d noticed signs going up at my local station:

“Strike Action, Northern Rail 5th October’ 😳

I must have been having a good day that particular day as I didn’t panic and just went into the taxi office and asked if they could drop me off further down the line instead. 👍

I’d prepared everything in advance as usual and had everything waiting for me on the kitchen worktop😇 I’m so glad I’ve always been highly organised as it must be difficult for those who aren’t to try and learn that skill when dementia enters their life…

A few days before the 5th we had a nice email from Alexis Kirschbaum saying how much she was looking forward to seeing us☺️ and highlighting the TUBE STRIKE that was taking place on the day😱
😳😱😳

I decided to quickly close my emails in the hope that it was a ‘dementiua hallucination’ but sadly, it was still there 30 minutes later. I made a cuppa tea…….

Alexis had offered to send a car to the station for me but the thought of the chaos that may greet me at Kings Cross and 5000 other booked cars looking for their people threw me into a panic. I’d coincidentally already printed out my walking map so decided it was going to be easier to walk. I’d pass familiar landmarks – UCL, Wellcome Trust, Russell Gardens, so would feel safe…….I hoped

It was a much longer taxi drive in the dark due to the Northern train strike and the night before had been very stormy but luckily there was only a few stray branches and puddles to navigate.
The nice thing about travelling from Brough is there’s a lovely little tea kiosk that serves Yorkshire tea……….every cloud😊
The train was on time and we trundled our way down to London. It was also turning into a lovely day.

I was meeting the lovely Anna Wharton, my partner in crime with the book, at a café nearby the publishers. She assured me we’d met there before🙄.

My walk from the station went amazingly smoothly thanks to my map and google talking in my ear😊 I couldn’t resist taking a piccie of the autumn colours as I passed by Tavistock Square Gardens…

Anna arrived just after me and after a hug we went for a cuppa and catch up.

The first thing she asked was did I realise the tube strike had been called off……🙄
But it had been a nice walk and I’d enjoy the walk back – much better than being on a crowded tube train. Good job I hadn’t noticed as to change my plans would have got me totally confused as my maps were for walking.

We made our way to the Bloomsbury office and were met by Alexis and lots of smiley friendly faces. It was so nice to meet them all and hear their plans, which simply don’t seem real at the moment………One surprise they had for us was a proof copy of the book and it was so nice to have something that resembled a book in my hands. The other was being given a copy of their 2018 New Titles catalogue with my book design on the back cover!

They are the nicest people and I could just wander round their offices all day long looking at all the amazing books. All too soon it was lunch time and time to go down and talk to all the staff and take them through Dementia Friends……..

More on meeting all the staff on Monday….

 

Travelling to Norwich……….🙄

Yesterday saw me travelling south and then East across to Norwich. I don’t think I’ve been to Norwich before….🤔

Ages ago, Bryony Porter, a second year PhD student at the University of East Anglia, in Norwich, contacted me . Bryony is being funded by the Alzheimer’s Society and is researching the challenges of multiple medication use in people with dementia.

It was a beautiful morning outside my window this morning. The leaves are starting to fall and unveil the view beyond the trees.

I’d been looking forward to this trip. It was going to take me over 5 hours to get there but Bryony had sorted out a hotel for me and I was being rewarded the following day by delivering a talk to my favourite people – students. This time the audience for the seminar would be a mix of students, researchers, academics and interested members of the public apparently, so very exciting.

The beautiful morning soon turned sour as my travel plans immediately went array🙄. I planned to catch the bus from the village into Beverley. A ten minute bus ride leaving me lots of time to amble to the station……the 10am bus is never late…….it always turns up on time…….I could even use my bus pass so no cost……needless to say on the one day I wanted it to arrive as usual, it didn’t….😳 I gave up and went home at 10.15 as I knew the chances of me catching the train were diminishing fast. But no problem, I’d ring my taxi people and get a taxi to Brough further up the line………
“Sorry Wendy I’m a bit short of drivers today. I can get you one in an hour’😱
I rang Gemma, now in a panic…….no reply to begin with…😶 I tried again and her lovely face appeared on screen🤗 and yes she could take me but at what time?……
“I don’t know🤷‍♀️” was my response as all my instructions were from Beverley🙄
“I’ll just come now then” ❤️😍❤️
Instantly relieved and now the threat of heart failure getting less by the minute, I waited and within a few minutes Gemma was there and I arrived at Brough in plenty of time to catch the train………..🎉I sat on the first train clicking away on my ipad taking happy photos and this morning the windmills looked particularly calming………

…..not a good start to the journey😐 Bryony had txt me from Norwich first thing and I’d told her everything was going fine🤣

We trundled along to Doncaster and I started to look at the notes I’d made…….I saw that I had a 50 minute wait at Peterborough…..perfect…..then notice a 7 minute wait between connections at Doncaster😨how did that happen?! I must have tried to sort this one out myself and not noticed the short change over……..😩……we were late leaving Goole because they couldn’t find the ramp for the wheelchair😳so I decided not to look at the time and just deal with whatever when we got to Doncaster….🙈

For once delays worked in my favour and my second train was delayed for a few minutes so a quick trip to the loo and my second train arrived – phew!
I had to keep saying to myself ‘Get off at Peterborough with suitcase’ as I’d never got off there before and usually trundled straight by……but verbal and electronic reminders did their trick…

I had a 40 minute wait at Peterborough and settled down with a cuppa……..all is well in the world again😊☕️

I’d never been on the Peterborough to Norwich line before so I was quite happy to just sit and look out of the window at all the new scenary……the long flat landscape of the Fens stretching out for miles…

I used to live in the next county of Suffolk and very good friends still live there. Maureen has to do this trek every time she comes to see me🙄sorry!

We got to Ely and then seemed to go back the way we had just come…😶 I had the photos to prove it – the rowers were still rowing, the bridge over the river still got in the way….. No conductor walking up and down to ask…..no announcement reassuring me I was still on the right train……and then I had a brain wave😇 I could track me on the same app that my daughters track me on🏅
And there was my little train speeding along towards Thetford and I could see Norwich after it. We must simply have reversed and changed tracks but with no announcement or guard to ask it was very unsettling for a few minutes…….

One day my nice journeys will out number my scary ones………sure I’ve said that before….🤔

I got to Norwich and Bryony had told me to take a taxi and provided me with a map in case I wanted to wander….the hotel people were lovely and also showed me how to get to Marks and Spencer for my evening sandwich and snacks. On the way I spotted the Castle so couldn’t resist taking a piccie….

And then a nice man told me how to get to the Cathedral allowing me to get my final photo before barricading myself in my hotel room for the evening…..

Tomorrow will be all about meeting the students….😊

 

Importance of paying expenses……

It never ceases to amaze me how some organisers find it acceptable not to pay all our expenses………

Some are totally wonderful. Not only do they support us in every way possible, by asking what help we need, but they detail what will be paid for and ask if anything else is needed. Some offer to collect and drop back home if local. Some even pay expenses on the day!

However, there are those with little understanding of what attending an event can entail. That makes me feel like a tick box and used…….😔

Many people with dementia and supporters are more than happy to speak at events, to staff, to organisations, etc, etc……but if our expenses are not in the budget please don’t ask us.

Many people with dementia and supporters are not in work and even if they are, surely it’s only courteous and expected that if you ask someone to take the trouble to attend and speak, then you ensure they’re not out of pocket?

Travel tickets are one expense but so also are taxis if needed and we still have to eat if it’s an overnight or if it takes a whole day with travelling. Many offer to meet us at the station, or suggest we get a taxi or provide a good walking map.

It’s embarrasing enough having to ask someone to book train tickets, so please don’t embarrass me further by making me feel bad about asking for my taxi fare to be refunded or anything else I reasonably claim. And after the event please don’t tell me taxi fares aren’t’ covered as how else am I suppose to get from my house to the station when public transport doesn’t exist?

I put lots of planning and preparation into any event I’m asked to speak at so please return the favour.

I rely on the integrity of others to repay any expenses claimed and havn’t a clue whether they are or not they are as once I’ve submitted I simply forget so if you’ve been my contact person it would be really useful to track whether I have actually been repaid, and some do this as a matter of course, which is wonderful.

I’m more than happy to attend and speak, but please don’t let me be out of pocket.

There’s a guide on the DEEP web site for including people with dementia in the second list “Involving people with dementia at conferences and events”…..the last paragraph is equally as important as the first and everything in between.

http://dementiavoices.org.uk/resources/deep-guides/

Sorry couldn’t make it appear as a link to the guide itself……end of rant….

 

Minds and Voices head to the seaside……

Well I survived August and here we now are in World Alzheimers month.

Some time ago Minds & Voices had a visit from Charlie of TransPennine Express following a rubbish train journey by some of the group.He promised us an assisted travel day to the seaside and last Wednesday was the day we put the train service to the test on a day out to Scarborough.
We were going with the DEEP group from Bradford and meeting the group from Scarborough there, so it promised to be an eventful day.

Obviously the weather decided to change from the warm sunshine of the previous weekend and started off cool and grey but at least it was dry. It was a silly o’clock start for me as I needed to get to York to meet up with the motley crew.

We all arrived with time to spare Charlie from Transpennine and his colleague joined us. The cartoonist, Tony Husband and photoman, Ian Beesley, also joined us and were very nice. They were there to recreate the day in photos and cartoons in the style of a day out at the seaside from the 50’s and 60’s.

We were fine and dandy….until the train arrived……..the very full train……and chaos ensued. People were standing and there was nothing calm about this part of the journey. We had half a coach booked but I didn’t think much of the journey or organisation. Rita had to get on in her wheelchair in First Class, as that’s the only door that takes the ramp……….. and then crush through the crowds to find us and Eddie offered to stand to allow her to sit………chaos, didn’t like it. If I’d have been alone I would have turned away from the crush and taken photos out of the window, but I was with 30 others so was concerned for them too.

Eddie suggested how they should have put a notice on the doors saying how this part of the carriage was for a party of people ……….Charlie lost all his brownie points…

I’ve had worse train journeys but it was probably the fact that I was expecting the chaos to go smoothly as Transpennine were ‘supporting ‘us. To expect organised calm and get total chaos didn’t do it for me.

Ian tried everything to lighten the mood and make us chuckle.

“Unfortunately the Fat Controller isn’t with us today”

We had about 4 or 5 standing. But we all wanted to be together so Charlie’s offer of 3 to sit in first class went untaken……

Philly Hare got on further down the line so was another one standing…..It wasn’t what Charlie envisaged …..and certainly not what we were expecting. I needed to put it behind me as all I wanted to do was turn back and go home once we got to Scarborough. The stress and chaos was too much but others were meeting us there so I stood it out.

Conversations continued and Charlie gradually clawed back bits of brownie points – not amounting to a whole one though. If the powers that be don’t see the problem, we’ll continue to have 3 overcrowded carriages for busy journeys and stressful journeys. He wanted us to feed back as not to feed back wouldn’t highlight the issue. Charlie would be writing his own report hopefully.

We got off, all very thankful and an open top bus was waiting for us, courtesy of Eddie who use to work on them.

Our own personal tourist guide in Eddie..

The cafe was wonderful. All organised, very friendly staff and bright and colourful.

Elaine and Eric heading for the cafe

During the meal Tony husband went amongst us listening to stories about travelling while Ian took many photos. They are part of the Ideal project – and today is about travel – they thought they might call it A Grand Day out. Ian will produce black and white photos of the day and Tony will produce a set of postcards about our travel stories in cartoon style in the old seaside postcard style…….. Magic – can’t wait to see them and we’ll all get copies!

We had time to stretch our legs along the sea front. If I’m alone I can almost cope with hustle and bustle as I can disappear into my own little world, but add into the pot of being in a group and I found it very stressful. But I was lucky and Philly kept me company and took me to the quieter area by the sea and fed back all about the trip to Geneva with Keith Oliver.

Photo courtesy of Philly…

But soon enough it was time for the bus to pick us back up and take us back to the station.

The journey back was much better organised – the train was opened so we could all get on and it was less full so far less stressful. It was just nice and relaxed. Ian took more photos!

Charlie sat on our table and told us enough about future plans to earn him back enough bit to have half a brownie point – the other half will only be allocated when changes actually materialise on the trains……he asked what one thing would make it easier now…. I said:
‘Smiley friendly staff, a smiley guard that walks frequently up and down the train, and room to have my suitcase next to me”
Ok so I know he only asked for one, but I was on a roll……there are many many things but those popped into my head.

An interesting day with lots learnt by the train company……but we’ll only know if they listened if changes happen………

Group photo by Philly at the end of the day…