Monthly Peer Support…….

Yesterday I had an early start trundling off to York for my monthly fix of Peer Support with the amazing Minds And Voices……
It was a meeting in a different venue as we’d been invited to Glen Lodge in Heworth by Jo Bell from the council. It’s the council’s sheltered housing scheme and just had a new extension added.

I’d been a tad disappointed when Damian had emailed us about the venue by adding ‘no hard hats needed as it’s finished’…..🤨 Once again a case of being called in after the event instead of at the design stage when we might have been able to save money…….🙈

Anyway……..

It was a cold, dark rainy morning but at least the taxi driver and then the bus to York was on time. Damian had agreed to meet me as usual. The town cows have been put inside their barns for the winter so no piccies of them on the Westwood for a few months….

It was also very foggy trundling over the Wolds, so now views of nice scenery today..

I got to the Minster where I was meeting Damian and found Damian waiting for me with Eddie and we made our way to Glen Lodge

BIG plus immediately was that all the random staff we met in corridors had smiley faces and were very friendly.

Damian put our poster up from UK Dementia Congress but it kept falling down so me and Eddie sorted it out….

‘If you want a job done properly ask people with dementia’ 😂🤣😂🤣

I went to test the loo but couldn’t work out how to put the light on, only for Damian to realise that it was one of those where you have to step in and move around and then the light comes on😶🤐

While we waiting Damian suddenly realised it was Emilys birthday🤯 so, since I was in the area where I used to live, I trundled off to the post office to get a card……

Once everyone had arrived we sang happy birthday and piccies ensued


Birthday girl is by the window…


Took 3 piccies to get everyone in!

We then caused chaos with the patio doors as we needed them open as it was so hot
Why are these places soooooooo hot………..🔥?
But we set all the alarms off🤣😂🤣😜 – we’re not called the ‘disrupters’ for nothing…..🤩

We were then shown round the new communal living room upstairs and then an ordinary flat and a flat for someone with dementia…………we came up with a very long snagging list, which was disappointing.
Signage in corridors, numbers on the doors being silver so not visible, bathrooms with no contrast and no grab rails in the right places. The most dangerous was no grab rail next to the loo but instead, what will be a red hot radiator, that will be grabbed instead……..🙈……..no use of colour to contrast in many areas…….

There was a lovely corner shelf outside each flat for people to personalise. Someone loved Mickey Mouse so had a massive Micky on the shelf. Another was ex army so had military memorabilia. So that was a nice touch.

I know I shouldn’t laugh, but I did find it funny when Elaine collapsed…..She always does as it’s part of a condition she has, but we’re all used to it…..so wwe don’t panic……but the 2 staff nearly had heart failure and were running round like headless chicken, while we we all there saying, Nah, she’ll be fine, she’ll be back with us in a minute’… poor staff they must have wished they’d never met  us…….😊

The staff constantly got confused as to where things were which signage would easily sort out……..lots and lots of things just weren’t right and many of them were very basic. Once again it appeared that aesthetics had won over practicality.

But……..It was a lovely place with smiley staff and had so much potential…..
but why oh why did they not ask people with dementia at the design stage?
They could have got so much more right first time round……

The new settees and chairs were very comfy in the room they allowed us to use….shame we didn’t have a lorry round the corner😊

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Exhausting week…..

I think I must have said before how I’ve really stuffed myself for November….no white gaps on my calendar as exciting things have snuck in under the radar…..

Well this week ended with the wonderfully friendly warm people from publishers, Bloomsbury, coming to my house yesterday to do some filming for my book. THe day was wonderful but mainly due to the people who came, which makes all the difference.

Today the week ends with me and Gemma doing our first Christmas reccie in London.

So exhausting, most definitely, but a very exciting week.

So can’t wait for the weekend when I can finally hibernate for a couple of days….


Courtesy of my dear friend Google….

Final Day in Manchester…..

It was a bit of a mare of a start as the hotel messed up the room for our 3 Nations Dementia Working Group meeting and put us in a suite with a very small room and a very small table to accommodate 12 of us and 5 chairs😳🤐…..Maria McDonagh joined us as the ambassador manager and sorted out a space with the hotel manager in the restaurant instead….

Kim Nguyen has supported us the whole of the 2 days and has been a star – a star doing an impersonation of a headless chicken at times, but still a superstar…..and bless her, this wasn’t a good start to her day either…

We’re all ambassadors with a small a and some of us have been Ambassadors with a big A. But we’re all equal and all do equally important stuff.

We discussed our role with Maria and the way forward with the new strategy.

Next up was Vivienne Francis who is in charge of branding. She was here to offer support on our logo. We have to think carefully about our logo as some things are acceptable and some things aren’t with regards to the individual countries which hadn’t occurred to us..

We went through all our project updates – so much so that I couldn’t type as I had to listen🙄

After a very much needed cuppa after the chaotic morning we continued until lunch and spoke about our proposed strapline.

At some point, not sure when! But some of us went and had a piccie opportunity with the banners….not sure why we don’t have all the group, which is such a shame but it’s wonderful with the few who were there.

Some of us then had to pitch for ideas our ideas projects to become involved with.

Keith put a good solid proposal linking the Human Rights and disability campaign to the 3NDWG
Joy proposed ‘reaching the next generation’ with her Mr Alzheimers idea that she uses in her area.
Nigel put forward Dementia in the Prison Service.
I proposed working with Citizens Advice Bureau as they’re often the go to group when people initially have a problem and I think when diagnosed people may go for financial advice but I’m not sure how prepared they are to understand what might be needed.

Hilary pitched for the adaption of church services. People regularly attended church services but today’s services often have hymns they don’t know or carols that aren’t familiar with so services that use the old format may benefit some people.

Great discussion….

While everyone was having lunch I met with Julie McCaughey, Engagement and Participation Officer, for the North and we chatted for ages about how we can connect and be involved with each other.

After lunch we all trundled into the conference room to hear our lovely friend Shelagh speak to the managers about the 3 Nations Dementia Working Group. Sheilagh throughout her life has been an avid campaigner for Womens Rights and now she is a campaigner for people living with dementia.


Shelagh is the tiny figure at the front right!

Shelagh’s family call dementia, ‘fizzy hammers’ because that’s what the grandchildren call it and today her ‘fizzy hammers’ were in full flow as it had been a long 2 days.
She spoke about the 3 Nations Dementia Working Group.
Many people are working in the society as part of a career pathway and that’s quite right, but:

‘We, as a group are in it for the long run until we enter the darkness of dementia’

‘So is it worth it?’ We believe, yes as we’re modelling what it’s like to live with dementia. We support each other through good and bad and don’t bat an eyelid when things go wrong for an individual as we’ve all been there and it might be our turn next.
Brilliant Shelagh!

We then made our way to the board room for our final session.
However it was now 2.30 and it had been such a long 2 days that fingers refused to type and brain had to use every ounce left to listen.

We all left exhausted but still on a mission and with lots of ideas that I’m sure will resurface once I’ve plugged myself in and recharged.

I had to end with a lovely photo ….I arrived home to find this wonderful present waiting for me from Rachael Litherland for some work I did with DEEP❤️


600 Yorkshire Tea bags – enough to last me until Christmas😂🤣😂🤣

I’m soooo glad I booked me on 1st Class as the train going was chocca and the train coming back was overflowing 😨 but the whole journey was in the dark so no nice piccies……..🙈

2 Days in Manchester- Day 1

So yesterday I trundled off to Manchester for a 2 day Conference. It was partly for the 3 Nations Dementia Working Group and partly the 2 day Alzheimers society managers conference. I was due to do a double act with Doug Brown at some point which should be fun😊

It was going to be a mega busy 2 days from the look of the agenda😳 I really will be glad when November is finished as I’ve stuffed myself and my calendar….no free white spaces😨 I’m sure good things must have snuck in after I thought I’d sorted It with some free days….🤐

I was glad I booked 1st class as the forecasted sardines of yesterday soon appeared. My seat was at the wrong side so I had to sneak over to the other side to get my morning Humber piccie – don’t think I’ve ever seen the journey from this side of the train🙄


Big downside of Trans Pennine is no wifi to keep me occupied😔

The journey across the Pennines is one of my favourite, especially this time of year with the autumn colours but I could only get a piccie of the misty murk this morning but it was still a lovely crossing.

So I arrived to find Hilary and Kim already in the room. We all had ‘I want to speak’ and ‘Focus’ cards as we can get side tracked so the Focus cards brings us back on track.

Soon most people had arrived.

We had the User Involvement group from Manchester join us  and we were keen to build links.

We all went round and introduced ourselves for the benefit of the Manchester Group.
Hilary filled us in on the agenda and reminded us we were meeting the Department of Health in the afternoon as they are the first organisation to ask for our help.

Nicky Timmis, who supported the group from Manchester, her role was created in response to devolution. She is there to empower people with dementia in the Greater Manchester.
One striking story Nicky quoted was the instance of a person in a care Home who used to be a prison officer but now feels locked up herself – very sad……

It was soon time to join the start of the main conference on the floor below.

I was amazed to see soooo many managers – I didn’t realise the Society had so many, but it just shows how big the Society has become. I had lots of hellos and hugs and especially nice to see Katie of the media team.

Adele and Tim chaired the session.

Jeremy Hughes then continued with the statement that the conference was all about Voice and Knowledge. Listen, learn and enquire….👍 he spoke of the Bill Gates blog that was published on Monday detailing the 50 million he’d donated to Dementia Discovery but also stating there was further money for other projects.

He also spoke of the new ‘We’ statements which all start with We have the right……’

There was lots to celebrate as it’s been a challenging year for the Society but change is never easy and it was time to celebrate the positives.

Jeremy then spoke of the 3 pillars – New deal on Society, Support and Research.

Jeremy then introduced Prof Murna Downs from Bradford University. She gave a great quote which I hope I got right……
“Never underestimate the ability of a person with dementia; Never over estimate the ability of a Professor.”
She went through all the exciting opportunities in research and the amazing projects that are happening, especially in Bradford

The technical skills of researchers come in the form of knowing the question that needs answering and researchers developing the methodology to find the answers.

Great talk by Murna

Up next was the strategy fair stands where I was doing a double act on New deal on Research with Doug Brown.

We had to leave before the end as time was approaching for us to meet with the Department of Health.
They are the first external organisation to ask for our feedback.

They were there to ask our views about help and support for people with dementia and their carers.

Jill Moffat and Kathryn Flynn from the dementia policy team have been tasked with trying to address the consistent feedback that once diagnosed there is little information available.
They want to align the work with the dementia statements….

We all had a bucketful of suggestions of how their document needed amending and the changes needed.

Keith mentioned that most of us have been ‘discharged’ and told ‘come back when you’re worse’. We’re not discharged because we’ve got better, we’re discharged because there is nothing for us – we’re not going to get better.

I said ‘We don’t know what we don’t know’. The onus shouldn’t be on us to ask for help when we’re diagnosed, the help should be automatically offered through a process.

We called the meeting to an end an hour later as we were all flagging. There was a meal with the managers in the evening but I went out and bought my sandwich and went back to my room to snuggle down for the evening…😴😴

Day 2 tomorrow…..

Travelling and Winter diet…….random ramblings…..

As this blog is being published, I’ll be travelling to Manchester to meet all my friends in the 3 Nations Dementia Working Group and also attending the Alzheimers society’s 2 day Managers Conference.

I’d not felt too good this last few weeks and travelling on some routes, not all, has become increasingly harder and today I’m travelling on one such route. The Transpennine Express from Hull to Manchester is often crammed to bursting point and can be very distressing if I’m on my own. So today I decided I would go 1st Class. It doesn’t offer much extra, simply a carriage that isn’t crammed to the roof so wasn’t extortionate.

Obviously I can only claim my expenses for standard class but travelling first class on the train that is mega busy makes me feel safer.
This way I know I’ll get a seat and not be surrounded by people standing and also that staff will be on hand to help if I get in a pickle.
It’s a shame that 1st class is the only way to ensure I feel safe, but at the moment, it is how it is, and at least means I can still travel alone.


Packed like sardines – courtesy of Google

Also my body has always been very good at telling me what it needs to eat! I remember years ago, coming out of hospital and all I wanted was sliced tomatoes 😳 – turned out my body was short of whatever tomatoes are full of…..then the time when my body suddenly decided it needed loads of nuts – I’d never liked or wanted nuts in my life before then but I got a craving for nuts – turns out my body was down on whatever nuts provide. This has happened on many occassions…….
A week or so ago I wrote about my eating and how I’d been having the same meal of salad and fish for months and months. Well a few days after writing it the weather turned very cold. I carried on eating my normal meal but I became very cold and couldn’t get warm – when I say cold, I mean my inside was cold, my bones were cold. One evening I couldn’t swallow my salad🙄 My body refused any more salad. I went looking round the supermarket the following day to see if I could find a read meal that appealed.
I came home with Lasagne and that night my body was happy again so now I have a fridge full of lasagne…..😂. For those worried about my one meal diet I’ve also found salmon and mashed potato and soup, so that’s me sorted for the winter😊

The body is as strange and complex as the brain but mine is very good at telling me what it needs when, thank goodness!

End of rambling…….😊

Final Part – UK Dementia Congress, Thursday….

I got home on Wednesday evening totally zonked and really didn’t feel well. It had been not only a long day but such a busy day getting continual hugs and hellos. It’s sooo nice seeing everyone but it’s also exhausting. Needless to say, the journey home didn’t go to plan but I won’t bore you with the details, but ‘on time’ didn’t appear anywhere on the information boards….
However, I was on my trundle once more on Thursday morning for the final day, knowing that I’d be leaving by lunch time, which made it achievable.

It was another early cold start but taxi and trains behaved themselves. No early morning photo today as it seemed darker and duller so too much reflection in the carriage window.

I got to Doncaster and waited for the shuttle.

As soon as I arrived at the racecourse I saw the lovely Elaine and her husband Eric from Minds and Voices

But sadly our talks clashed so I wouldn’t be able to cheer Elaine on

Lots more people came up and said hello and hugs galore before it was time for my first session. I was speaking first at the Young Dementia Network session. I spoke about my involvement and why there is a need for a Young Onset Network – I said amongst other things:

Yes of course, those in the later stages are just as important as those in the early stages but we have very different needs. We may have young children as well as financial commitments and be in employment. Yet services aren’t geared up to offer us the support we need. Many professionaLS appear to lack the knowledge and understanding of Young Onset.’

Donna, Dominique, Janet and Jan then spoke about each of their strands of the network
Dominique gave the wonderful news that the Royal College of GPs had just endorsed our new GP Guide, which is a huge success.

Janet also spoke of the YOD Care Pathway that has been put together – another great success.

Prof Jan Oyebode finished off talking about the research workstream, of which I’m a member. Our aim is to build awareness of research and trying to take the mystery out of research.

We finally had a discussion in small groups about how the network could benefit them and how to get involved more and any other suggestions. – Good discussion all round and as Jan said ‘It’s the start of conversation’ and a summary of today will be posted on the network


Contact details for the network…

My head really wasn’t in a good place after yesterday so I wasn’t as much use as I should have been.

In the next plenary, Craig Ritchie from Edinburgh University gave a very good talk on his belief that prevention is the way forward. His optimism lies in prevention not cure. Tailoring prevention to individuals. Identifying risk of developing dementia and pinpointing the changes that could be made to prevent dementia developing. Current research has shown those receiving the package of intervention can be seen to be at a less risk of actually developing dementia. He also stated that the term ‘Memory clinic’ should be abolished and changed to ‘Brain Health Centre’ – perfect!

My last session of Congress started off with the 3 Welsh amigos talking about the influence they had on the Welsh dementia Strategy.


The 3 amigos talking about the huge part they played in the Welsh dementia strategy – Chris Roberts, Nigel Lord and Jayne Roberts

Finally Rachael Litherland finished off with a session around involvement. How do we capture the impact of involvement which is what DEEP is all about. We have nearly 90 DEEP group now in the UK. The desire and feel stronger through the collective voice.


Dory, George and moi…

Rachael asked us to describe one word or phrase which described us and wha we were doing. Dory saw herself as a Firework, George as a Disrupter and me as a Headlight, shining on the reality of living with dementia.

So how was the venue after me and Philly had done a walk around a few months ago? Well, no venue can be perfect unless it’s been purposely built with people with dementia involved in the design. So there was obviously going to be things they couldn’t change. But they’d done an awful lot of what we’d asked. The one positive thing that stays in my mind is the smiley faced helpers who were directing you to each talk around the 4 floors of the building. The signage was good. They had the disposable mugs instead of tiny cups that are difficult to hold and there were many ‘tea points’.

However…..me thinks they need some training into how to make tea as it was a very strange colour and I really don’t think it could have been Yorkshire tea. But maybe that was my fault as I don’t think I stipulated that on our reccie around prior to the event…….lessons learnt😊

A wonderful 2 days with wonderful people……and the calming sight of the Humber as I neared home was very welcome……..

So back to a Part 2 of the UK Dementia Congress…..

So back to a Part 2 of the UK Dementia Congress…….we’d got to tea break and then it was time for the ‘Living Possitively with dementia’ session
So after after a much needed cuppa, the lovely George Rook, chaired the next session. I was the first speaker and my talk was called :

“Why involvement is my s-d-k-‘

I ended by saying:

“I’d rather succumb to exhaustion than dementia and that’s why involvement is my Suduko”


Photo courtesy of Twitter or Facebook:)

Nice applause and questions made it worthwhile.

Next up was Ian Mackie from Stockton, also living with dementia, who told his story of the search for his fathers grave who died serving for the Royal Navy – ‘The man that became a Bridge’ – wonderful.

Then it was the turn of Dementia Diaries – we’re funded by the Big Lottery and Comic Relief. It’s a simple project that allows people with dementia talk about what they want when they want. Yehhh!!
Steve Clifford and Dory Davies took part in this session saying why the diaries were important to them. You can hear the things we say at:

https://dementiadiaries.org/

Finally a very nice researcher, who’s name I totally missed – sorry! -had been asked to look at what difference from someone who gets involved in Dementia Diaries and those who didn’t. He spoke about the in depth interviews and wrote an evaluation report. They found It gave us a sense of identity and something to engage our minds. It also improves confidence and self esteem. An unanticipated finding, was the process of sharing their experiences helped their family and friends understand what they were experiencing.
Diarists also felt connected with others – peer support in a virtual sense.We feel supported by each other’s experience.
Helps people to share a voice and it shares preconceived ideas of dementia – real voice real people experiencing real things adds authenticity. What we all say on Dementia Diaries is reshaping peoples thoughts about what dementia is. A wonderful session.

At lunch time I came down the escalator to get my cuppa and this wonderful lady was waiting to give me a hug.


Prof Pat Sikes has been my friend since I was an Alzheimers society monitor on her research with the equally amazing Mel Hall about the effect a diagnosis had on children.. Pat and I regularly catch up on email but we rarely see one another so this made my day. You just know when there are people who you want to be in your life forever and Pat is one such person.

Once everyone went into the first Plenary session of the afternoon I sat a while with Chris & Jayne Roberts, Shelagh, and Joy just to sit and chat as it was all becoming a bit much. It was getting late and brain switch off felt imminent. But I had to try and stay alert as I was in a session with Philly and Steve Clifford on design. I was talking about our reccie of the congress venue itself but also what makes a bad venue. I’ve written this before the time in question as I know I won’t be typing soon……😴

Sure enough the page is empty and I can’t remember how the afternoon went, but with Philly leading I it could only have been amazing….

Final day tomorrow……..

Dementia Congress 2017 – Part 1

Yesterday I travelled to Doncaster for my first of 2 days there. It had started the evening before and I was very jealous of everyone there already as Twitter was showing me all the discussion taking place.

Anyway I set off yesterday morning at silly o’clock. It was an interesting start as, due to the Northern Rail train strike, I couldn’t get from Beverley to Hull🙄 so had to get a taxi all the way to Brough to pick up the train there – an expensive start to the day🤐

It was cold and dark, but the one good thing about Brough station is the lovely man who has a tiny tea kiosk AND serves Yorkshire tea, so all in the world was wonderful.
It was a slow train and by the time we got to the windmill farm the sky was telling me it was going to be a nice day

The organisers, at our suggestion, had organised a shuttle from the station and I met a lovely lady also wandering round as the promised signs weren’t anywhere to be seen🙄

Once I got there so many people came up and gave me hugs and hellos that it was wonderful, but I wish I could remember who they all were!.

This is the 12th Dementia Congress.
I sat in the main hall ready for the start with the lovely Peter Mittler and equally wonderful Jayne Roberts.

Mark from Journal of Dementia care started off the day and introduced Jeremy Hughes along with the lovely Shelagh Robinson. Shelagh gave the first talk of the conference about the 3 Nations Dementia Working Group. ‘Working together in Dementia’
She was at a meeting recently where one paternalistic healthcare professionals announced ‘but people with dementia can’t take risks’🙄😳😱🤐🤐🤐🤐🤐 – some people just don’t get it. Wonder if they read my blog about my Firewalk🤔
“We in the 3 Nations group are challenging these attitudes’ ‘We truly believe that without our voice something is missing….’

Great start Shelagh🎖

Anna from TIDE introduced the next session – ‘There are still too many reported cases of poor care and support. She was there to talk about End of Life Care.
‘We’re not used to talking about end of life care’ Healthcare professionals say end of life care conversations are difficult, but Anna quite rightly said – difficult for who? The film she showed proved this wrong. It was a film hearing people with dementia and carers say what a good death to them would mean. A wonderful film facilitated by Polly Kaiser – fabulous.
This was a joint session with TIDE, Innovations, DEEP and Life Story Network. Collective voice of people with dementia and supporters👍

Death is one thing that’s guaranteed so not to talk about it seems crazy….We must have a two way conversation – the person with dementia talking about what they would like but also asking the carer what their wishes are. Our needs often run in parallel but are equally sooo important.
Rachael Litherland then led a conversation with 4 of the stars of the film including Maria and Dory who are living with dementia.

Having discussions, ‘gives peace of mind’ said Dory.

Magic😊

Dr Liz Sampson was next – Living well until the end – What can palliative care do for people with dementia? We’re not very good at using the word ‘death’. These are the most used alternative

But what’s wrong with the word ‘death’?
When is the right time to make Advance Care Planning? Ethics committees are often reluctant to approve talking about such things with people with dementia as it might upset people🙄

parliamentary person Jackie ??? With ministerial responsibilities that include dementia, was the final person before the break. She did say the right thing in so far as she said she was there to listen as well as talk. So partial brownie point, but actions speak far louder than words and more sections of the brownie point will only appear if actions appear.

At break time I caught up with the absolute superstar, Jess Hiles and her mum Jo.Jess does for learning disabilities what I do for dementia and raises awareness and speaks out at events. We met at a conference I was speaking at for McIntyre Care. Jess, and mum Jo have written a book about her Nan,  who had dementia – She’s Still my Nan’.


A wonderful book by Jess and her mum with amazing art work

It was because of this that me and Jess became buddies. So it was very apt to have a hug and a photo by the MacIntyre stand.

And finally for Part 1…..I thought I’d share a picture of a stress ba;; I picked up at a stand. I can’t remember what the stand was promoting but they looked quite shocked when I asked for one of their pigs, as I wanted to hold it up when people were saying  silly things….


And pigs might fly…….😊

More tomorrow……..

Yet another interesting day travelling…..read to the end!

Several weeks ago thieves stole all the lead off Beverley station roof – it then rained and the consequence of that was all the machinery was waterlogged. The information boards that I check each time, the ticket machine where I pick up all my tickets, the ticket office that is always so kind and helps me……were all closed, broken and silent …….So I and no one else knew what train was coming, whether it was delayed, whether it was cancelled. I had to go into Hull to collect any tickets ordered for me.
Total confusion and the information boards remained still and silent………

I’d been told it might be months before everything was working again. However, this cold frosty morning, I had a lovely surprise as everything had come to life again! They had pulled out all the stops and now everything was shining brightly and boards told me where and when trains were going – perfect – happy unconfused bunny again and thank you to the stars who fixed it all.🎖🎖🎖

Anyway, after that bright, if dark start to the day, my train and connecting train were even on time and this one was waiting for me in Hull….


It’s never dull in Hull…..😊 certainly isn’t during the City of Culture year!

 

The sun was slowly rising as we trundled through the countryside.

So yesterday I was on my way to London. I was going to Crutched Friars as part of the Alzheimers Society Research Network Communications group. I hadn’t realised I was part of this group until the invitation came 🙄
But I was going to see lots of my friends so I was happy to be trundling down. The aim was to talk about how we, as network volunteers, can answer best the questions we’re often asked and how we can help in disseminating good research.

Everything was going fine until I got to the tube station….’No Tubes to Tower Hill, alight at Aldgate’🙈 Here we go again me thought…….a nice man told me which way to walk outside the station and I then took a while to set my app to talk me to Tower Hill…….very pleased with myself when I finally arrived at Crutched Friars

I arrived to find Barbara, Sandra and Matt already chatting as we had a meeting with Matt before the main event to discuss a very exciting event the 3 of us are organising in York on the 14TH MARCH!! More to come soon.

We then went into the main meeting and Anna opened the session clarifying the aims.

Aoife Kiely- (I had to keep asking how to say her name as I kept calling her Iffy (😳) but it’s actually Eefa😇 ) – joined our table as it was her very first day as communications officer! She was a former scientists at UCL!!


A nice new playmate…

I mentioned how we need to be less formal and make it fun – sow seeds of the interesting stuff we do and ‘taster sessions’ to give people an insight into all that’s available to get involved in…
I thought it would be good to encourage couples to become involved in the research network as then they can support one another – a supporter and partner with dementia working together in the network and also able to work separately with support if they want to.

We thought of loads of ideas!

I also suggested they need a Twitter account as what better way to get all the wonderful things we do out to more people.

Lunch time arrived and there was no tuna on the plates brought in and I would have been fine with just a cuppa or 3 but Tim earned a bucketful of brownie points by actually going out and getting me a tuna sandwich, having read my blog about eating. That was the kindest thing to do…..🎖

After lunch we started with discussing the Key message – the what and why.

People rarely take in much when being spoken to so it’s important to – Tell people what you’re going to say – Tell them – And Remind them at the end

Dissemination  is key to the relevance and real value of any research. If it’s not implemented the public will see little point in the process.

Brain started to switch off around 2.30 as we headed for a reflection of the day but words appear to be lacking on my ipad at this point apart from making it clearer how flexible the role can be to encourage others who may be a tad daunted by the network to become involved and volunteer……

Final photo had to be the 3 amigos from Yorkshire…….

However….that’s not the end of the story, as I’m typing this on a very strange and unfamiliar train going anywhere but my usual route…….🙄…….you may have heard of all my nightmare train journeys…..I got a txt from my daughter asking if I was ok as there was problem at Kings Cross😳. At this point I’m on the tube and quite hunky dory……I arrive at Kings Cross to find total chaos and all the boards saying ‘Delayed’ ‘Find alternative route’😱🙈😳🙈🙈

Luckily Gemma had already done this for me and txt me to go to St Pancras and get a train to Sheffield and then get a train home😴. I then proceeded to St Pancras to find a mountain of people all waiting for the same train. It would mean my journey would be 2 hours longer🤐 but at least I had a Gemma to give me instructions as many were just wandering about totally confused……🙄 and I would have been one of them if it hadn’t have been for Gemma. The stories were of a sad death on the track or major security alert – I was almost hoping for the latter…

Very tired as I passed through Leicester…..not a usual city I see on my travels……good job Tim bought me that tuna sandwich as it might be the only thing I have today as it’ll be too late to eat when I get home…..

Guest blog by my daughter Sarah…….

An article published recently in The Lancet Psychiatry by a so called ‘expert’, ‘Doubts about Dementia Diagnoses’.made it’s way into my inbox and also into various other publications. I chose to ignore it as it was sad that a professional could question our diagnosis simply because we have the ability to speak out at events. However, others chose to respond, and the article, in response by William T HU, ‘No Doubts about Dementia Advocacy’ was spot on.

I have no problem with people questioning the process of diagnosing and yes, mistakes are made and each are entitled to their own opinion, but as Hu said, ‘….but meaningful engagement must extend beyond Persons with Dementia feeling like curios and sideshows’

It’s also important for ‘experts’ to remember that it isn’t just ourselves who are saddened and demoralised by such comments. We always say that when we get a diagnosis, our family and friends also receive the diagnosis. With this in mind my daughter felt the need to respond to this article.

Here’s her blog:

I usually try and avoid reading comments on social media about my mum, as people can be so thoughtless and insensitive it’s hard not to take it personally. So I just don’t read them.

However I recently read an article on doubt around some people’s dementia diagnosis. I am aware that mum (and other people with dementia) can appear more well than they are, simply because they are working so hard at speaking out and trying to change perceptions/culture/research on dementia.

Before mum developed dementia, she was a highly organised person who was renowned for her memory (much to my dismay growing up as a teenager!). She used to go running a few times a week, loved to bake, walking miles and miles in the Lake District, she was on the go non stop. And she was a self confessed workaholic!

On top of the fact that mum has had PET scans and vigorous year long neurological tests, I know she has Alzheimer’s Disease and Vascular Dementia because of the changes I am seeing as her daughter.

When Mum gets invited to speak at a conference, she may appear to some like she’s just arrived, enjoying socialising, talking with ease to hundreds of people and then leaves.

Well let me set those people straight.

She has to go by train as she was advised (and made the decision) to stop driving.
Mum may have booked the train tickets herself, or she may have needed me and my sister to help her book them if her brain was having a foggy day.
She may have had to stay in a hotel the night before to orientate her to the place (which can be stressful in itself – new environment, finding the hotel, working out the shower, not sleeping).
She will have spent time printing maps and pictures of the place she is going so she might recognise it when she gets there.
She will have taken time writing her talk (she always writes a new one for each event to keep current and relevant).
She probably won’t eat due to low appetite and there is so much going on, decision making becomes more difficult. So she sticks to cups of tea!
Socialising is challenging especially if there is more than one person talking.
On an average day, her brain starts to tire early afternoon when she could be having a rest at home, but she can’t as she has to face the journey home (and if you read her blog you’ll know Wendy doesn’t have much luck with trains).
And the next day mum is usually more tired than normal because of the energy it took the day before.

I can’t believe I’ve felt the need to write this but some people seem to think they can diagnose someone with dementia just by looking at them or meeting them briefly. It presents in every person in individual ways and the way they deal with it is also unique. Mum is speaking out not only because it raises awareness but also because she is fuelled by a desire for a future cure and improved care. Doing all that she does also slows the deterioration and keeps the brain working. The reality is mum has embraced a terminal illness in the only way she knows how: overcoming its challenges with passion and positivity.

I am not saying all this for pity, that’s the last thing she would want. But just for a bit of respect and sensitivity when questioning ones serious terminal diagnosis.