Ilkley Book Festival……

So todays blog is all about Sunday! It was an eventful day for more reasons than one.

If my parents had been alive still it would have been my dad’s 100^th birthday…..my mum would have been 100 next month. But they also got married on his birthday so they would have had a mega long anniversary too…….

It was also the day I spent 2 hours on a Chat to Apple support as the latest update made all the reminders on my phone disappear…..🙈🤯😳😱……they came back with their new look on my iPad, but not my iPhone….so for me that’s a catastrophe…..

I saw bits of my phone I never knew existed during that long 2 hours but we couldn’t find a way to restore them – so I ended up having to arrange another chat as I was exhausted …..so maybe by the time you’re reading this all is right in the world…….🤞

But the other happening on Sunday was I was at Ilkley Book Festival with Nicci Gerrard once more. We’d spent Friday at Cheltenham together and now we were at Ilkley. Sarah had offered to take me to the station so no worries about the taxi being on time 😂….it was another wet grey day……

but I was looking forward to the event as several people had emailed me saying they were going. A wonderful previous NHS manager, Helen Gilbert, was coming. Helen spotted I’d had a stroke when I was at work and looked after me until she went onto pastures new…….My ex’s neice had also emailed to say she would be there – I knew I wouldn’t recognise her as I havn’t seen her for many many years, so that would also be lovely!

Becky from the event txt me in the morning to confirm she would be meeting me at the station carrying a sign. She also said she’d be dressed inb all black…😳…black is a bad colour for me and many people with dementia so I’m glad she warned me as she’ll look like a head floating without a body 😂🤣😂 🙈……..

The first and second train were on time……and surprisingly full for a Sunday….the third train to Ilkley caused much confusion as there were 3 trains on one platform and no one seemed to know where each was going 🙄….and they all had Leeds on them🙈…….one woman looked at her app for me and we decided we’d plump for the middle one….🤐……there was a nervous wait until the guard announced it was the train for Ilkley and everyone signed with relief and could smile once more…

I arrived to find a person carrying a sign but also an umbrella as it was raining…Ilkley didn’t look at it’s best. Nicci had already arrived and had decided to walk around town, but the rain had defeated her and she was waiting for me upstairs when I arrived at the venue.

We chatted happily until our interviewer arrived……for some reason I didn’t type at all while we were waiting….or at all again until I was in my room……I think it was because the event was a late one for me…..neither did I take any piccie 😳😱🙈🙈🙈🙈🙈🙈 It had been a very long week…..

So the what I remember as I’m sat here afterwards in my hotel room……..a full room of warm welcoming people ……questions galore at the end…..and before the book signing everyone sang happy birthday to my dad……who would have been 100 today…..what a lovely way end…

We signed books, heard lots of stories and had lots of hugs. Sadly I didn’t see Louise, so maybe the weather prevented her attending…..one woman came up to me in tears as I was on my way out…..  saying I’d gven her hope……how amazing…..

But my highlight was seeing Helen Gilbert, we hugged we chatted and we hugged again. She drove me back to my hotel where we chatted about this that and everything…..and of course…had to have a piccie…and this time I didn’t forget…

Now, at last I can start getting ready for Italy on Wednesday……did I just say that….😳🥴

A Trundle to support a playmate……..

Yesterday I had a trundle to Halifax – don’t think I’ve ever been there before 🤔…..

A lovely playmate of mine, Julie Hayden, set up a DEEP support group for people with Young Onset dementia in her area, because, once again, there was nothing……..

Julie had contacted me a while ago to ask if I’d attend their annual awareness event which also happened to be their 2^nd birthday!

Originally it had been planned for next week but then I got a sudden unexpected invited to speak in Italy 😳….did I just say that……gulp🤯…….but more of that next week……

Anyway we managed to switch and change things around so it fell on their second birthday instead, so was meant to be….

The sun was shining on the world when I opened my curtains…..but the taxi driver was late….I rang their number as usual, and my lovely phone person at the other end knew it was my number, said ‘Hello Wendy, sorry he’s late but you’ll still be there in time for your train’….all I had to say was ‘Thankyou’……perfect….wonderful when people are prepared to understand…..

He was a very chirpie driver, who sang ‘Mr Blue Sky’ all the way there and we arrived with 5 minutes to spare…..⭐️

I then looked at my email from Julie and we’d agreed for me to be met at the station at 13.24…..I seem to get numbers in a pickle of lately and had actually left 2 hours early 😳🙈🙈🙈🙈……but when I got to Hull, my train was mega delayed so for once it didn’t matter 🤣

I tried to add 10 to 38 and came up with 58 🙈 but knew something wasn’t right……maths was my strongest subject at school…😔…..numbers so often become a problem for people with dementia and that seems to be becoming the case with me…..me thinks it’s because I travel nearly everyday, that I don’t panic. I txt my daughters just in case I forgot to tell them this latest issue and Gemma immediately txt me back asking if I needed to FaceTime for help but I’d already found a smiley faced guard to help me…..if I didn’t travel often it may put me off travelling……..

Anyway…….the sunshine over the Humber cheered me up

The chaos didn’t stop there as, due to the train being mega delayed  they decided it would terminate before Manchester, so lots of travellers were looking for that smiley face again……..her smile was tinged with fraughtness by now……..🤯

I arrived in Halifax, watched the world go by for a while, due to my timing and was soon met by Rosie from the Alzheimers society who was having a stand at the event. We ambled along and a few minutes later  were in a wonderful renovated church  which has now been converted to a community venue where they have a theatre, café and many rooms……..and of course my first task was to have a hug with playmate Julie

It was an event specifically aimed at highlighting Young Onset and I was hoping word would get round that Julie’s DEEP group exists…….the Mayor arrived as did some other helpers. We were hoping the weather wouldn’t put people off, but you just never know at these events……

After waiting and waiting, it was obvious that people just weren’t going to arrive. I felt sooooo sorry for Julie……people put in such hard work organising events and when people who promised they’d come fail to turn up it must be so disappointing. I don’t mind….it happens. You can’t force people to come and listen…….but my heart sank for Julie……….

So instead of what was planned we simply sat and chatted and that was nice in itself. It also meant I could catch an earlier train home which is always welcome. However, arriving at Leeds I found more chaos, more cancellation, more delays……so my ‘on time sardine’ train didn’t seem too traumatic……….🙄

 

A celebration of success……..

After a weekend of nothingness following a chaotic week last week, I started off this mega busy week in Bradford yesterday …..very long blog but sooo much to say…….🙄

We were there to celebrate the incredible hard work of the last 3 years of Dr Sahdia Parveen and her amazingly, revealing and successful study of Caregiving Hope. This study was looking at how willing and prepared people are and obliged they feel to care for those closest to them when diagnosed with dementia……

Sahdia’s success has come about through her hard work, energy and being mega organised. We’ve been with her all the way as Alzheimers Society Research Network Monitors – Me, Sandra and Htay have been with Sahdia for the whole study so how wonderful to share the end event with her as well…..

Because I’d had such a busy week last week I was late sorting out stuff for this week. So Sunday morning I suddenly had a panic as the main admin people at Bradford had booked me the wrong train ticket. I’d asked for an ‘Anytime Short Journey’ ticket and they’d booked me an ‘Off Peak’…😳😳😳….. I needed to travel before off peak time. When Sahdia contacted them Sunday they implied the ticket would be fine – I knew it wouldn’t..and it wasn’t……so they cost Sahdia far more from her budget than they needed. That’s why I always like to book my own, but this time they insisted for some reason……🙈

Anyway, the day started off well with the most glorious 30 mins sunrise….

Both the taxi man and me were just mesmerised……

30 minutes of glorious heaven went out with the blink of an eye and turned to dull grey raininess before my eyes………for those that didn’t look out they missed a wondrous sight…

Sandra was meeting me at Bradford station and we txt each other updates on our respective journeys…..having met, we trundled up the steep hill to the Uni to find Sahdia had everything all ready!! She’d been up since 5am, such was her excitement for her big day…we were leading the workshops in the afternoon. My one was “Living with Dementia” and Prof Jan would help and transcribe for me……

Then suddenly……the fire alarm went off 😳🤯 ……..and I just panicked, as I do, not knowing what to do, where to go…….we saw people in orange jackets waving at us outside…..so decided we’d better leave the building 😂……it was a test but a timed test…..we failed miserably….

The lovely Ripaljeet joined us……followed by Htay….

The room began to fill up…….with carers, who’d been part of the project and professionals and some who had a dual role…… everyone had been asked if they minded their photos being taken and all agreed…..

Prof Jan started off the event….welcoming everyone and saying how the next stage is for our thinking today about what 3 interventions would make a difference for Carers……

She said she was the ‘warm up act’ 😂…….

Jan spoke about the Centre for applied studies in Dementia Studies…..they not only do research but work with Gp’s, Care Homes, Hospices and a whole range of other activities…..

“ Dementia is a family affair” – Jan said…..family members provide a huge part as opposed to services that in comparison offer little….

Tom Kitwood left an amazing legacy to Bradford ……..Tom’s theory was one of relationships……

Sahdia’s project has been funded by the Alzheimers Society and Siobhan was here today representing the society…..Sahdia thanked all of us who have worked with her on the project as studies don’t come about from one persons input…..

Amazingly ethics won’t allow her to name us to the audience 🙈……

Sahdia has been a carer herself and health professionals often assume that carers are willing and prepared to provide care…..South Asians often ‘feel’ obligated’ to look after their own….but are they willing and are they prepared?  do they know how to access services and provide practical and emotional support.? Those willing may not know how to care.

This was the whole aim of the study…..is there a link between between, obligation willingness and preparedness to the carers outcomes?

They aimed to recruite over 300 but they recruited over 700, which was astounding…..the numbers were almost equal between white British and south Asian carers….

White British perceived they had less family support than south Asian but when it was measured, it was almost the same….south Asian felt more obliged, white British felt more willing….interesting finding…….

They gave the carers cameras to take photos of what helped them care….and at what point..

There is no word for dementia in the South Asian community and so the study referred to it as memory problems, but then the carers struggled to understand the different issues that affected their loved one that also come with dementia….

The carers took amazing photos

She asked why one carer painted their door yellow and red – it was to enable the person with dementia to go out on their own and know which was their house when they came back. When asked how they were coping, they would say they weren’t, but the photos allowed their coping strategies to shine out without them even realising how inventive they were being…..

The preparedness for decisions around residential care was fascinating between white British and and British south Asian carers…..

White British expected the person to move into a care home, whereas for the British south Asian carers it was far more complex – once they’d got over the cultural stigma associated with moving to a care home, it proved difficult to find care homes that adequately recognised their cultural needs, language, etc…..

Carers often say..’never, never will I allow them to go into a care home’…..but once difficulties arose and dementia progressed, views changed…..

Sahdia also ran alongside the main study, a study for future carers….those who weren’t current carers….the method was through a one off online survey and focus groups….they received over 1200 people instead of their low target of a couple of hundred….amazing…..more fascinating findings……..many had unrealistic expectations and thought there were wonderful services already in place……😳…..

Older members of the South Asian community were prepared to go into care homes, but the younger age group said ‘no way’ but had unrealistic expectations of what ‘caring’ entailed…

I could have written soooooo much more, so much came out of the study……..but this blog would have had to be several blogs as it would have been so long…..and I simply couldn’t type quick enough!!

Preparedness seems to be the key to carers outcomes…..so preparedness is what Sahdia will focus on next. What should be in place to enable carers to care and that’s where our workshops will come in this afternoon….to come up with the top 3 topics which would enable people to feel prepared to care

The questions from the audience followed…..including the existence of South Asian Care Homes. No one knew of any, but one person said how they didn’t necessarily need their own homes, they needed to be accepted in existing homes with knowleable staff in the cultural  differences…

It was then our turn as Research Network monitors to give a brief talk about our role….as critical friends of Sahdia…..

Sandra joined the Network exactly at the same time as me. Sandra was followed by me and Htay – we all had different stories and different reasons for being there…..it’s personal stories that make the value of research come alive….one thing I said was:

“The academic brings their professional expertise, we bring our expert by experience expertise and together we make a winning formula for success.”

After lunch and much chat and meeting new people, we broke into workshops – 8 workshops that are going to create a support package for carers……

Me and Prof Jan were leading the ‘Living with Dementia’ table. So many things came out……the difficulty in getting diagnosis………the importance of talking to others……responsibility to be signposted….’we become compulsive liars’ to enable people with dementia to accept help, said one…..the pressure of being a carer…..of not knowing what they don’t know……the need for education in society and in healthcare professionals……

One person gave an example of her mum being excluded from the church committees when they knew she had dementia, which upset all of us…..they thought she was no longer capable……😔….I said they need to go to the church and explain how that exclusion was soooo wrong………and why…….

Why are we at the bottom of the pile for support and service…….? I said, We’re the easy option to be forgotten because we forget and carers are so busy caring they don’t have the energy……

Soo good Jan wrote notes as I hardly typed anything – that’s how good the conversation was and I had to concentrate……..we spoke for an hour and could have gone on for hours…

Each group feedback their finding……….I was defitely running on empty and my typing stopped…

But…….what am amazing day…….meeting amazing people once more……listening, sharing and laughing together …….the perfect combination…

Sahdia should be so proud of her study…..so proud of today…….and so proud of the informative magic book  published from the findings….

A Trundle to support a Playmate……..

Yesterday I ventured on a long journey to Brecon, in Wales. You may think why, after getting back at 8pm the night before, would I then get up at silly o’clock the next day and travel all over again? Well…..this was for special people…..to support my playmates, other people with dementia, starting up a new peer support group like my Minds and Voices……I’ll do anything for playmates……

Before I start the blog I’m going to ramble for a bit, explaining the importance of peer support to me….

When I was diagnosed, I was the last person on the planet to join social groups- I wasn’t a sociable person, I liked my own company. Sports clubs, yes….I played every sport imaginable but not the social side of things……however when dementia turned up on my doorstep, I felt so alone, so isolated, as though I was the only person with this dreadful future hanging over me…..

I remember my first visit to Minds and Voices….it didn’t have a name back then and met in a small back street café – the story’s in my book. I remember the fear I felt and anxious knot in my stomach as I didn’t know what to expect when I opened that door….. All I knew was I needed something. I needed people in my position to run things past. I would never have thought peer support would have been for me but it’s been my lifeline.

Many friendships evolve with time, well time is one thing we don’t have. Our friendships seem to evolve immediately. Put me in a room with people with dementia and they’re instantly my family, sounds weird I know. But the one connection we have is dementia, nothing else matters.
We don’t judge, we don’t criticise, we don’t discriminate. We all have dementia. That cruel disease has brought me the gift of meeting people I would never have met in any other circumstances. Wonderful people, all there for one another with that common denominator………they’re very special. And for those who are reluctant to join groups, I’d simply say, give it a try. You’ll never know what gems of people are just waiting for you and need you as much as you might need them…

End of ramble, back to my blog…..

I’d got home so late the night before that I had to hope that the organised me had everything ready as my batteries were well and truly dead after a very long but wonderful day previously.

The morning came and I just picked everything up as normal in the hope it was all there. I was on automatic. The taxi arrived, the first train arrived, I jumped on the second train to Manchester in Hull (slight exaggeration there🥴)….well I had my tickets in my pocket when the guard asked for them, so that was a relief.

It was another wonderful sky across the Humber

The adorable Rachel Niblock, from Innovations had asked if I would support playmate Frances at the launch of her much needed peer support group in Brecon. Frances despately wanted her own group of playmates and since there wasn’t one, she decided, with the help of Rachel, to start her own. Playmate Dory had done the same in Wales. She’d turned up week after week in the local pub and been alone, then suddenly one by one, playmates started to join her……wonderful and all credit to Dory for not giving up.

Seeing as it Rachel organising things, I had no worries. I didn’t even print pictures and havn’t a clue where I’m going. I’m just following Rachels detailed instructions – that’s how much I trust all at Innovations. However, I’d forgotten that the time I was travelling would be rush hour and I was firmly squashed with all the other sardines on the Manchester train…..more sardines prised themselves in at each station ..the woman next to me amazingly found elbow room to crochet and suddenly let out a gasp….she’d gone wrong…..unravelled it, only to let out another sigh….I simply said, “was it right after all?” And she laughed and nodded…..at least they were smiley sardines😊

I’ll stop waffling now or this blog will go on forever!

Rachel picked me up at Hereford station as planned along with Dory and the adorable Megan…my new best friend….

We back to her little haven lodge in the most stunning area, had a cuppa soup so we wouldn’t make a mess down our clothes 🤣….and then they took me to my B&B just up the hill……and wow, what a view from my room…….

After I’d got myself sorted, we made our way into Brecon to the Wonky Green Book shop called The Hours, with the loveliest of smiley people and a display of my books……they’ve been nominated for the UK’s best small shop………!!!!! They find

out in November if they’ve won……..🤞an independent book shop with a wonderful little café at the back……

Frances arrived and another piccie

The plan was for Dory and Frances to interview me about my book, which I was soooo looking forward to…….

We took our places and the seats laid out in the book shop began to fill up………Rachel had decided to record it for Dementia Diaries, so as soon as the link appears I’ll publish it…..

Rachel introduced us and Frances started off by saying why she needed to set up “Like Minded People……..” ……Frances felt sad that she didn’t have her own group…….it was reading my book and meeting Dory that made her realise she wasn’t alone.
She asked Nicky and Leigh if she could use The Hours coffee shop to start a group and they kindly agreed.

We talked about how I wrote the book, how TIME has taken on a different meaning with dementia. Time and nature have become so important to me. Taking time to see the simplest of things and appreciate their beauty. Many people spend their time wishing for the weekend, wishing for tomorrow, wishing their lives away and miss the small moments of magic all around them…..whereas I enjoy today, the magical small beauties and if today is a bad day, then tomorrow may be better…..
I read 2 passages from my book ending with the Billy paragraph before we all took questions from the audience. People were so kind and there was much raucous laughter, tears and silence as we spoke…we made a great ‘Three Amigos’ or ‘3 wise monkeys……’ 😂 and it was because we were three that it was so special…..

What a wonderful time we had. I signed books afterwards and answered more questions before people drifted off and we waited to see if anyone would attend the first meeting of Frances’s group. – even if it’s just the 3 of us, the word will get round as the audience talks about it outside to others, as we all spoke about the importance of this special friendship created when part of a DEEP group……..

Time for one last piccie with Nicky and Leigh before we left…

I was totally exhausted when I got back to my B&B with the biggest bed in the world……but wouldn’t have missed today for anything…….

Silly o’clock trundle to London……..

A long blog – sorry!….but so much to report back ………

Yesterday I was up before the birds for an early morning trundle to London. Autumn really has arrived…..the dark mornings, although it was before 5am when I got up 🙄, and very chilly – even the heating was still fast asleep.

The taxi driver arrived at 05.40 to take me to the station for the first train of the day. We both had noticed how the town cows were no longer roaming the Westwood 😔……

The first train of the day is also the only train of the day to go direct to London, so I could snuggle down in my seat and watch the world wake up…..the beauty of early morning autumn trundles is watching the sky come alive….❤️

As we trundled towards Doncaster new lakes appeared as rivers had overflowed, fields flooded and land deluged by the recent heavy rain falls…….livestock huddle together waiting for the farmer to come and rescue them ……..the sunrise was stunning but we’d turned the corner to head south and I was now at the wrong side of the carriage 🙄

I’d been asked many moons ago to speak at an event organised by Camilla Trimble from the Oustanding Society.

Camilla set up the society in 2016 when the residential care home that she owned in Dorset received its first outstanding rating by the Care Quality Commission.

After the initial euphoria had abated she was out walking her dog and wanted to try and do something positive with this rating and to bring together other providers who had gained this rating to share information and disseminate best practice. So the society was born that now meets twice a year and is supported by Care England.

They initially put me down to speak in the afternoon, but I’m much better at events like this in a morning so they kindly asked Jeremy Hughes if he would move around slightly so I could speak in the morning – thankfully he agreed..

Once in London the venue was on a route I knew well near Euston. They had offered for someone to meet me, but unless I know and trust that person I prefer to make it alone. Then I don’t have the worry of them not turning up, not finding me etc. That way I only have myself to worry about. It was in the Skill for Care offices and smiley people greeted me.

Zoe, who would be introducing me got me a cuppa. She owns a care home in the south. Everyone here is from somewhere which has the ‘Outstanding’ rating, some from Learning disability homes, which was good to see. The room was filling up nicely with people from all over the country and the photographer kindly took a piccie of me and Camilla – can’t remember who the man was…🙈…but he was very nice….

The fire alarm then went off…..😳😳🙈🙈🙈🤯🤯🤯 but my hearing aids took away the intensity and pain, but it still didn’t stop me being agitated until someone said it was a test and it became silent again…..😶

It started with Camilla saying a few words about housekeeping etc….some were still travelling and trains for some were delayed…..😇 not mine 😇

Avnish Goyal, the Chair of Care England, was the first speaker. He started by congratulating all those present for being Outstanding Homes. He spoke about the excellence in austerity…how:

“social care in still in the shadows of Health Care”

Social care is broken and Health care dominates ‘Integration is a myth”

He brought the audience into the discussion. They were asked about the system for commissioning for quality – e.g. is it fair for commissioning to be done on price rather than quality…….?

Surprise surprise, once again, even in this sector is a postcode lottery….from county to county differs. Lack of consistency once again.

Those that spoke revealed that Commissioners are only interested in price and ignore quality – this shocked me but didn’t surprise me. 😔

Not every Commissioners seem to appreciate a care home in their county that’s given an Outstanding rating. One said…“It seems an embarrasment – we’re not trying to dumb down other homes, we want to share best practice” 

It was nice to see “Risk Aware, not Risk averse” on one slide

It was fascinating to hear their challenges…

What does Outstanding look like? – many people may have totally diferent perceptions…

Is it fair that the baseline goes up for them to get their second Outstanding? Again a fascinating discussion, especially around Innovation and the meaning in that setting. If the ‘care’ is wonderful and every resident and every family member loves it, yet it doesn’t meet ‘innovation’ criteria for the CQC then it doesn’t meet that bit….Innovation is one thing their measured on and certainly isn’t all about technology in my opinion.

The new CQC person, a speaker this afternoon, that I’ll miss, will hopefully get a grilling about all this discontent and inconsistency……..

There were some shocking stories.

There were so many fab quotes I couldn’t type enough, but this one said it all……

“We’re not box ticking here, we’re looking after people” said one person.

Avnish wrote an article called Outstanding – ‘Holy Grail or poisoned chalice” – another interesting and unexpected discussion.
Many managers suddenly get offers of higher wages elsewhere, but one wonderfully said that ‘Managers’ don’t get the ‘Outstanding’, the team does”……..perfect….

He asked ‘Is nationalising social care the answer’ – he said no, gave some valid reason but including, we will still have to fund care…….

He ended with a slide showing ‘what would my mum like’ – since his mum entered the home, it’s helped him see what’s important.

Fabulous talk that wasn’t ‘a talk’ as it involved the audience so much in discussion………and really interesting viewpoints …..

James Rycroft –– another founder member of the Outstanding Society – then introduced the next speaker, Rob, from Skills for care, who provided the venue and continue to support them and gave an update on their work..

After break it was my turn…….they were so kind in their applause at the end…….one thing I said:

“If someone is sat with food in front of them untouched. Is it because they can’t see it because you’ve put it on the wrong colour plate? If it because they don’t feel hungry? Is it because they’ve forgotten how to eat? Is it because the food on the plate is too complicated. Is the plate the wrong shape – I prefer to eat out of a bowl so I don’t get in a pickle or to eat finger food.”

Jeremy Hughes was after me…he is currently the Chief Exe of the Alzheimers Society but is due to step down soon.He’s been there for 10 years and simply feels it’s time to do something different in dementia…….

He spoke of the 5 Dementia Statements….they were written by people affected dementia. They wanted to encapsulate what was important to people with dementia. They all start with:

“We have the right to…….” Now acknowledging that all people affected with dementia are important – the person and those around them. Just because you have dementia doesn’t mean we don’t have entitlement.

“Not providing social care is costing 2.4 Billion….”

“Connection with the local community is important for Care Homes to consider”……he suggested they develop their care homes into community resources……..breaking the fear of care homes by opening up to the community……
People with dementia shouldn’t be blue lighted into hospital from Care Homes where there is no Nursing…..should more Care homes become Nursing Homes to enable a reduction in hospitalisation…….that sparked debate….

Technology shouldn’t replace personal connection…..

Some very important points were mentioned by Jeremy, especially stressing the importance of Care Homes taking part in research to allow those in the later stages to have a voice.

Over lunch and some lovely chats and hugs, it was time for me to leave them.

I trundled my way for the last bit of the Young Dementia UK meeting, where I would have been anyway if I hadn’t been with the lovely people this morning. However, when I got there, my batteries were running down….and I found I was typing gobbledegook so decided simply to sit and listen…not like me at all……..so sadly no blog, no piccies….totally useless……. 🙄 but it was lovely Simply getting my hugs and seeing everyone…….before finally heading home……..

Another wonderfully interesting day……..

Final Day of Dementia Enquirers gathering…….

At the end of the session yesterday we said goodbye to Tom, David and Rosemary, our abler enablers, and also to Mahri and Hugh sadly, but we had 2 surprise tea guests in Reinhard Guss and Toby Williamson.

Before we met up with them we all had a welcome respite in our rooms – for some it was sleep, for others a stretch of their legs, to catching up with family or friends on the phone, for me it was silence, time to close my eyes simply to block out the world. My silent world of conversation on Twitter bringing me back to life…..

Then for our tea gathering – photo courtesy of Reinhard…..

Once again laughter and conversation dominated the time but sadly I had to be the first to leave again, Philly helping me to wobble across the darkening courtyard to my room.

Morning soon arrived and our final day began, although today was to be a half day before we all ventured home. Breakfast was a gentle affair before we all met in our final room – a reduced number but perfectly formed…..

We talked about how this 3 days had worked and we all said how if it had to be London it had to be St Katherines as it was an oasis in the centre of the chaos of London. It also meant the professionals could attend which added an added an extra dimension to the discussions……yesterday really wouldn’t have had the same impact without them…

We then spoke of future plans and the topics for the morning – The ‘Belonging’ project with Chris Clarke from Hull Uni. That feeling of ‘Belonging’ could increase through our Dementia Enquirers so we’re looking into whether this happens and how to measure it.

The second was due to happen on International Disability Day in December – a zoom meeting with Tom Shakespeare on Research being done by real people of all disabilities. The intention is learning what obstacles they’ve have to overcome and also share learning through our experiences..

The third was Dementia Congress and our session on Thursday 7th Nov morning.

Names and dates all sorted and allocated….

We then had a discussion about our needs when asked to speak at an event and we decided we would record a dementia diary all together, there and then….talking about what makes or breaks us when that email comes through and – how we feel when it goes wrong and ending with how it makes us feel when it goes right.

It’s not rocket science…..but it’s amazing how many people think we magically appear. DEEP and Innovations get it right every time and I feel safe in their hands as we all do. I never worry when I’m in their hands…..I never plan half as much when it’s them because there’s no need.

We spent the time before break reflecting on yesterday…….through recording a video

The first question Rachael asked us was ‘I feel like a Researcher’ – giving a score between 0-5 where 0 is no knowledge. I said 5 simply because I have such a passion for research. I may not have the knowledge but I have the passion.

We then spoke of David’s Oral History project and we all said how powerful and emotional that made us all feel. He didn’t question whether we could learn this new skill. His humour, his passion, his belief and his understanding made us feel as though we could.

We fed off each other’s positivity and concerns and the outcome of a video was pure magic. I said we were sat in a historic moment in time and, WOW, how amazing that felt……

After a cuppa tea….we then had our final session on ‘Belonging’……a measurement of belonging with advice from Chris Clarke of Hull Uni.

By being involved in a Deep Network project like Dementia Enquirers, will people gain a sense of belonging?…we need to find a way of measuring whether or not this is true ….

Again, Rachael asked us What does the word ‘belonging’ to DEEP mean to you?…..for me it was comfort…..many great contributions including safe, accepted and valued….I don’t trust many people, I trust my daughters and Stuart, as they’re my world, the only other person I trust 100 % is me as I won’t let myself down. But I trust DEEP implicitly not to let me down – they’re the only organsaition…..

We all gave out such personal comments and feelings because we felt safe and ‘belonged’ to each other. None of us felt this unique feeling of belonging related to time – we met through the tragedy of dementia – it was that one common denominator that had brought this family of ours together and given us that instant feeling of belonging. We would never have met if it hadn’t been for dementia. It was all very emotional for everyone. We spoke about the ingredients of ‘belonging’, why DEEP is so unique and special…..

The morning passed so quickly that lunchtime arrived and then it was time to go our own ways but not before a final piccie

To end this blog my quote of the day has to go to Dory:

“We’re all unique and wonderful but together we’re a Masterpiece” ❤️

Day 2 of Dementia Enquirers……

The storms of the day before seem to have subsided but the uneasy feeling in my room continued…..there was something about my room that felt so sad, as though a tragedy had occurred here and left behind it’s mourning……it felt empty of any kind feelings. I know that sounds odd but that’s how it was…..

Breakfast would be the first time we were all together as Agnes arrived late from another event and I’d already gone to bed. Twitter showed we were awake so at 8am we met up for breakfast and had our hug…..before putting the world to rights on all things audiology, but also dispairing at the latest news from NHS England that appeared on Twitter

As we all said….where is the evidence that taking people back to any time helps as some may find that period of time a distressing period in their lives; it will need updating constantly. Why not simply ask what matters to each person and treat them with kindness and knowledgeable staff? Why waste money when it’s being said no money is available for staff and staff training? Rant over…….

So time for a calming photo of St Katherine’s courtyard looking towards the chapel…

09.30 arrived and we all met up to start our session.

Rachael started off and we simply went round the table and introduced ourselves again as Tom Shakespeare, Rosie Ashworth and David Crepaz-Keay ( our more than helpful professionals) had now joined the party.

It was a full day and as Agnes said, our meetings are full of laughter and conversation which helps leads to more in depth outcomes…..many sceptics may see this as a trivial exercise and why on earth have we been given half a million pounds when it could have gone to real research……..well, this is innovative true research and the money could not be better spent….The national lottery were blown away by our format……

Time for an early morning piccie while everyone was fresh! The full gang😊

We recapped on yesterday afternoon and the successful bids from DEEP groups for funding and the detail of each project, which are fascinating.

We all stressed the point that we’re not trying to prove our finding better than researchers – we’re saying how academic research AND our own research could be a force to reckon with as we’re the current missing link. To enhance the current process of research could only be a good thing.

Interestingly Tom, said how the list of projects are unique and probably havn’t been researched before……which just shows their importance…

We had a wonderful discussion around the vast difference in care for those with different disabilities – David said  “Society makes these ‘mind/body’ splits when thinking of disability.”

We then went onto possible seminars and webinars opportunities. We’ve got a number of stakeholders (people interested in our progress) and those supporting us as well as ourselves and of course, the wider world to keep communicating with…..

We’ve been given a spot at Dementia UK Congress…so Philly and Rachael will be sorting that out to see who logistically can attend.

There was then a discussion which lost me a bit on Rights as I can’t keep that legal info in my head but the likes of Howard are far more knowledgeable and skilled with all this so I’m happy to listen and let it disappear from my brain…..

There’s a Special edition of the Purple Dementia Journal (an international journal) and in the new year are running a whole journal on articles by people with dementia on research and our paper will be in their. It will be online in December and hard copy at the beginning of the year. Great news!

We spoke of the various ways we could advertise the work we’re doing to show people our work and what we’re capable of…..as people living with dementia…..lots of great exciting ideas – watch this space!

Tea break time and still the conversations continued…..and David even met the needs of Rachael and Philly by going to the shop for cake ❤️🤣😂

After a break David spoke about developing an oral history project.
So why would we want to do an oral history about dementia now……..because we’re in a point of time where it matters…….

We’re marking a point in time, just as he did about asylums. He wanted people to know what it was like, but not from a perspective of others but a perspective of people who lived those lives.

Placing our stories in a social historical context, and sayin this is our story at this point of time will be a really important document for now but also the future to show what living with dementia is like at this moment in history.

So what is oral history? – it is simply us telling our story……it’s placing it in a social and historical context.

It’s history – what people will see as the state of the world at that point in time……

The curator of Oral history at the British library advised David how it should be done for his project and we would have to be trained at how to do an oral history interviews for ours, but what a new skill to learn!. We should be the interviewees and interviewers.

I found David’s talk the highlight for me. His enthusiasm for this project with us is so infectious, I just can’t wait to be involved.
If we don’t tell our story, someone else will and we will do it better……it’s nothing to do with technical skills, it’s all to do with values, OUR values to our world, not politicians, healthcare professionals or academics….OURS……..giving people the space for people to speak about their life worth living……because it’s called “oral’ it doesn’t all have to be solely the spoken word – objects, photos, capturing facial expressions are all important. Bringing jigsaw pieces together in an oral history format……the life history of so many people have been lost through dementia and we don’t want ours to be lost.

Blown away by this……⭐️ and he also added…..

“You can’t go for more than 7 minutes without laughter”………❤️…I’m sure it’s laughter that help us focus on the task in hand, as we release the tension of having to concentrate so hard through laughter….

So now to lunch……..whenever food is available I eat……another reason for going to so many events! 😂

Anyway after lunch we had Sini talking about Theories of Change……..from the Charities Evaluation Services…..

Understanding why things happen and evaluating our work….what changes may happen, what sort of things will need to happen to make the change happen…..

Evaluating is Improving what we do and learning lessons for next time and it’s important to demonstrate what improvement we’ve made….and provide evidence to those who require evidence.

She showed a great slide demonstrating the chain of evaluating research…

Outcome is what you actively work towards, Impact is what you hope for…….

She used the example of having a birthday party to demonstrate each stage.

She suggested the best way for our project is to go backwards and start with deciding on the Impact we want to have ………it went a tad downhill and brain explosion time…🤯 I just started to get confused as Sini worked backwards, with different colours and confusion reigned…….we were split into groups and………we each had a different outcome to discuss the inputs needed……sooooooo

We had 3 topics to discuss in groups but my batteries were running out and this Duracell bunny was losing her hop……..

It was a wonderful discussion but a tad too far for me. I know I contributed but couldn’t type and contribute…..so here’s where I end for the day……..and after a long but amazing day we trundled back to our rooms for a piece of silence before tea….and passed by this wonderful statue on the way……

Final day tomorrow……

Heading to London ……….Day 1

After a lovely overnight stay in Leicester I arrived home mid evening to pack for the next trundle the following day to London. I’ve got a full diary now until the end of October and they all seem like a good idea at the time. But then November is quieter – I wish events could be spread themselves out a bit better 😂

I never know when it will be my last, like never knowing when the ‘last’ of anything will be, so, although I decline lots of offers, I do like to cram my diary,and suffer the consequences after🙄

On the way home from Leicester, I had a sudden panic of not knowing anything about the following day. I had a hunch it would all be waiting for me on my kitchen workshop, but couldn’t remember any detail of when and where I was meeting Rachael from Innovations. I knew my brain would have shut down by the time I got home so simply txt Rachael. She came back with the detail and I was a happy bunny. Whenever Innovations in Dementia are involved I never worry or plan as much, as I know they’ll look after us and sure enough, my pink file stuff was all sitting happily on the side when I got home……

Waffling again …🙄…..it was a very wet blustery day that greeted me…the only piccie I could get was a rain soaked window so I missed that one out….Piccie of my playmates later will make up for it…..

We were gathering for 3 days for a Dementia Enquirers Pioneers meeting at St Katherines in London. They’d tried to build in more travel and recovery time as it’s a very intense few days for our brains to cope with, but very pleasurable. I don’t think I’ve been to London for months 🤔….and definitely not since I got my hearing aids, so it’ll be interesting to see how the noise is…

Half way there and the skies brightened a tad…well the rain appeared to have stopped…

Rachael met me at Kings Cross along with Dory and then Philly and Tracey joined us and we all trundled in a taxi with a lovely cab driver who was entertained by our stories and laughter, especially about the 3 of us all being in yellow coats

My blog told me I’d been to St Katherines in the East End 3 times, but as the man showed us to our rooms through the maize of corridors and stairs, it felt unfamiliar. It didn’t feel right for some reason. I spent the next few minutes walking round in circles around the room, trying to settle myself – don’t know what was wrong with it….just didn’t feel right or friendly…🤔😔 not sure what’s going on….

We arranged to meet for a cuppa and catch up of the session at 4 so solitaire filled the gap and catching up on Twitterland….and once we were altogether the laughter began again…

We went over the last meetings. We were shown the little video we made talking about reviewing the research projects. You can view it here

https://www.dementiavoices.org.uk/dementia-enquirers/

The film shows the calm relaxed atmosphere we create and can work in with each other. We speak from the heart, and feel so calm and comfortable. We all agreed that it’s other people who make us feel uneasy but here we always feel calm with Innovations because we know everything will be ok, no matter what.

We went through each of the groups who have been awarded money to carry out their own research. Such fascinating projects – “Living alone versus living as a couple”
“Does class and ethnicity impact on the dementia pathway for the person with dementia”
Testing out accessible instruction videos for Alexa
To “how can public transport be improved” and many many more…..

It was lovely to see and be reminded of them all again.

Amidst the crashes of thunder, lightening and torrential rain falling outside, inside we were happy and relaxed. We were saying that this has never been done before…..people with dementia in the driving seat and so many professionals are watching and listening…..just to see whether it works…..well, so much time, effort and funding has been put into this project and the way we’re recording the progress will become an historic record for the future….how amazing to be part of it…❤️….to show what people with dementia CAN do……

Finally time for tea. Once again, laughter and conversation dominated this simple activity of eating but we were all fading, or at least I was….so instead of joining the evening sing song, I retired to bed and some silence…….

P.s…..my hearing aids have made London into a tolerable noise bubble instead of the crash bang wallop city of old…..wonderful……day 2 tomorrow…..

Talking to healthcare professionals in Leicester…….

Sunday saw me trundling down to Leicester ready for a conference on Monday.

Matron, Jenny Kay, had emailed many moons ago to ask if I would speak at their Univeristy Hospital Leicester ‘Champions Celebration’ Event

It looked such an interesting programme, from nutrition, relationship centred care to a ‘exercising to reduce deconditioning to my bit on adapting to life……

I’d had a discombobulated sort of day on Saturday as nothing was right – my routine had disappeared due to a cycling event in Beverley. So buses changed routes, no market, the town was quieter than usual – totally out of routine so I just became confused. So when I woke Sunday morning, I felt exhausted from the previous day, having had to work hard at sorting out the day….sounds silly but that’s just how it is….

The taxi man was super late……as soon as my time arrives I’m on edge wondering if it’s me that’s forgotten to book and I don’t like using the phone and get in a pickle. But my taxi company recognise my number, so I don’t have to say anything as they do the talking…..
“hello Wendy, sorry he’s a bit late but you’ll be fine for your train. He’ll be there in 5 mins”
And all I have to say is ‘Thank you’…..

I don’t usually like travelling on a Sunday as the trains can be doubly awkward but the first to Sheffield was on time…..surprisingly………..and the second 😳……I was soo tired that I fell asleep on the first train, but no panic as I was going to the last stop, but the second, I had to stay wide awake as I didn’t know the route. I’d typed notes of stations before mine, how many and how many minutes before mine and the one before…..and solitaire kept me company…

They’d booked me into a quiet Premier Inn near the venue and just a taxi ride away and as soon as I got there I was grateful for the silence and just closed my eyes for a while……..

The following morning, they’d arranged for a taxi to pick me up and take me to the venue. The taxi driver was obviously in Monday morning ‘I don’t want to be at work’ mode…..he didn’t help me, he didn’t say hello, he didn’t ask my name…he didn’t even move from his seat……😔

However, when I got there someone greeted me with a smile and helped me out and many people helped me from then on – all with smiley faces 😊

Jenny started off the day welcoming everyone and talked through the morning agenda and surprised me by putting me down as Doctor Wendy…😊 The audience was made up of lots of different specialities, all with an interest in dementia….

The opening remarks were by Chief Nurse Carolyn Fox……celebrating great practise was the theme of the day, sharing across professional groups.

Dr Emily Laithwaite, consultant geriatrician was up next talking about:
“what’s the fuss about frailty?”

She spoke of age just being a number and you can now no longer talk about patients age. She has many 90 year olds who are very active yet frail 55 years old……..those who are frail talk of not being able to do the things they use to and taking longer to get over illnesses….mmmmmthat sounds familiar 😳
Frail older people may prioritise outcomes differently – comfort over functional recovery so she encouraged everyone to ask the patient “what matters to you?” 👍

Nurse Natalie then spent 10 minutes talking about her nan…..her nan who loved a hug…and loved music. The idyllic life changed in the last 7 years once she was diagnosed with dementia. The cover up and paranoia, the confusion and differences…..but “her kindness still shone through”…..❤️ the story showed the unfair hand we’re dealt some times and the wider emotional effect on the whole family – wonderful ❤️

Before the break there was a poem from Rob Gee – their resident poet for the day……he was very loud, spoke very fast and animated but I imagine was very funny……😳

After a cuppa was a quiz from Older people and Dementia Sisters……..all around food….got everyone chatting and was good fun ….including what image appears on an HP sauce bottle?………..😊 Ha! That was very good…….very different…😂

Next up was Rebecca and Karen, Palliative Care/end of life lead nurse to talk about ‘Great Discharge”.

It was me up next and I spoke for about 30 mins on anything and everything including the importance of their language and body language:

“Never underestimate the effect of language and body language when talking to patients”

People kindly came up and bought my book before heading for the first Workshop of the day…….I stayed in the same room so I didn’t have to find anywhere so listened to Elizabeth Hillman”

“Let’s talk Parkinson’s”

James Parkinson in 1817 wrote about “an essay of shaky palsy”. With Parkinson it’s more common in men than women….They don’t really know why people get Parkinson’s and a tiny percent is hereditary. Sometime they can hazard a guess but it’s all if buts and maybe…..she showed faces of people in the media – Mohammed Ali and others……and then asked the audience what they knew about Parkinson’s before showing the symptoms

And also, slowness, stooping, speech changes, rigid facial expression, low mood and anxiety.

She then went onto explain how might their hospital experience be improved….very similar to people with dementia ….
She spoke of ‘on/off’ time for people with Parkinson’s. Medication can have a big effect – missed or not working correctly. People can suddenly stop moving, freeze on the spot, the thought process not working and by talking and saying 1,2,1,2 it can help them start walking again – bringing about a change in thought process. They can run in a field but freeze on a ward as there’s so many obstacles….
They can often not walk forwards but can walk backwards and sideways, so often follow a pattern on the floor.

We now know it’s far more than a movement disorder that James Parkinson spoke of in 1817…..and just like dementia, it’s nothing to do with age…….

Very interesting…….

I sold the last of my books while people were getting their lunch and we were also given the treat of the Rock Choir singing to us – very happy music while people ate 😊 and another song to start off the afternoon…….and were introduced by Heather Leatham, Assistant Chief Nurse…..after a very short video clip called

“The difference between Care and Caring” very poignant …

After all the singing and dancing it was Sarah Stoneley – Consultant geriatrician and Dementia lead, talking about nutrition….. “Food for thought” .

There was a slide showing what they can do to help

Forgetting to make food appetising – serving portions that are too big are pointless – so they try to serve smaller finger food. Oral issues can be constant and prevent people from eating yet oral hygiene is often forgotten. Give patients TIME and allow them to experience the joy of eating and drinking, when upright, awake and alert with food they like or want – large or small.
“Never assume that appetite loss is being caused by dementia.” 👍

Family and carers should be invited to be involved…….patient priority is often different from medical – listen to the patient and family – a nice way for my brain to end typing…….sadly I had to go before the end ….

But not before I went to the last workshop on Mindfulness for staff, where they showed this wonderful slide……wonderful ❤️.

A wonderful day, with wonderful people who looked after me well……bonus 😊

A trundle is a trundle no matter what mode of transport…..

I didn’t write about my time in paradise as I probably did the same things as always….a trundle on the bus, a walk to the lake……but maybe, just maybe, I havn’t written about a trundle on a boat round Derwentwater…….🤔……

I’ve done the round trip hundreds of times, but each time is different; the weather, the people, the calmness or temper of the water changing each trundle round. I’ve heard others say, ‘but you see the same thing each time’……….but if you look carefully you see something different each time too………you just have to look…..

Obviously I wasn’t typing, but I took loads of piccies and it’s the piccies that are reliving this trundle in my mind ……

The day before I’d had such a surprise at breakfast time as I arrived to find a friend, from a while back, had also booked into Appletrees as she’d read about it on my blog 😳 so this visit, I had company over breakfast…small world….

I decided to go for the second launch of the day at 10.30. After a thick fog had greeted me early doors, I stayed in my room waiting for it to clear, playing my morning routine of Scrabble and solitaire to wake up my equally foggy brain…..
I suddenly lifted my head from the screen….and it was as though someone had switched on a fan and blown it all away and the sky was clear blue and welcoming.

I ambled down to the Lake and found people already waiting…

We climbed on board and a jolly launchman welcomed us aboard, each passenger having their own agenda for being there. Happy dogs scampering down the steps…

The water was was beautifully calm and still, the only ripples created by the boat itself…

Nichol End first before heading for Hawes End, where many disembarked to scale the glorious Cat Bells. The mountain and clouds displaying their beauty in the mirror of the water below

As another launch passes by, passengers wave from one boat to another…..Brandlehow, then Lodore, where we were assured the waterfalls were in full flow for anyone venturing to the top, then back along to Ashness Bridge, which used to be my stop in days when I walked instead of wobbled, having climbed down from Walls Cragg. We were then heading back to Keswick.

If you look carefully you can see the Crane on the waters edge…blink and you’d have missed this majestic bird……

One last photo shows the rocky fells kept snug, with nature covering them in  a patchwork quilt of loveliness….

And before long we were back, one boat load of passengers being replaced by another and so it would continue on this gorgeous September day.

I managed to capture the last launch of the afternoon heading home and it was still full with happy visitors….me thinks business has been good for the launch this week…..