Category Archives: Education

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 100th birthday… 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 … 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… 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 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… 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… 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…….

Why acceptance of social care need isn’t always a given…..

Yesterday I trundled to York Uni. I’m involved with a study being carried out by Mark Wilberforce, Senior Research Fellow at the Social Policy Research Unit. Some time he asked if I would be interested in working on his project around helping older people to engage with social care where dementia or a mental health needs made it quite difficult. Universities love their acronyms and so it will be called the ‘HOPES’ study (as a shorthand… Helping Older People Engage with Social care.)

Many people with dementia and mental health issues, quite understandably, can be reluctant to allow strangers into their house. Home carers can often see this as them not wanting help and dismiss their reluctance, reporting back that they didn’t want to accept their care – end of. These people are then left without the social care needed because no one looks into the reason why……until a crisis occurs😔 With resources and visits being short, training limited, time is often one thing the home carers lack to enable them to build up trust and a rapport. The easiest solution is for them to be classed as -refusing sevices……

The study aims to find out what makes Specialist Support Workers in Community Helath Teams effective in encouraging older adults to accept social care….

So a very wet night was followed by an equally soggy morning and a grey world greeted me. A misty murk hung over the Humber as we trundled by

As we trundled further down the line towards York, the rain became torrential, fields were flooded, happy dogs accompanied by bedraggled rain soaked owners, heads down and possibly walking a tad quicker than normal……🥴

I was heading to York with their notorious sirens and loud unbearable noises so had my hearing aids in situe..but then….a beep beep in my ear signalled the batteries needed changing 😳….first time that had happened…..and never occurred to me to carry spares…..🙈 it will be an ear piercing time in York….🥴 Alarm immediately set to put spares in my bag when I get home…🙄

Mark had told me to get a taxi to the uni, to txt when I arrived, and he’d come and get me and I had a nice taxi driver and saw the floods continued with the River Ouse overflowing….

Mark met me as promised amidst Freshers week with people more lost than me!!😂🤣

Also there was playmate Maria Helena and husband David, along with Mark and Louise, (researcher)….
David told us about Maria Helena’s, who’s from Columbia, her time with dementia…how point of diagnosis is a very lose phrase as no one knows when dementia started….it was a wonderful story and one I could have listened to for ages…….love to hear peoples stories❤️…I realised I know the lovely couple from Minds and Voices!

Mark started off

And explained what the project was about and how we can influence and contribute to the project.

The point at which people need care is different for everyone.

So we’re looking at those in later life, with dementia and also those with mental health issues. The department of health has recently become the department of health and social care, but the joined up working is yet to materialise. Social care isn’t free so getting social care is challenging from the start.

“If only the help was offered in a way that recognised and adapted to the person living with dementia”

maybe it would be easier to accept. Imagine someone undressing you when you didn’t understand fully what was happening – you may lash out or refuse – I would! A care worker might see the person as ‘being challenging’, simply through lack of training, in how to manage these situations

The crisis can then happen when the loved ones can’t cope with caring and a state of neglect or poor living conditions appear……simply through lack of understanding from the start.

Other people shape our identity……the steotypical image fills peoples minds and we suddenly become ‘a person with dementia’ instead of a mother, a person who worked, etc etc.

Specialist support workers, employed by the NHS work in complex care, are supervised by professionals. But there’s no evidence as to how they help people to accept social care. People have to be referred by the Gp but once again, post code lottery exists. They’re not qualified and registered – if you think of teacher and teaching assistant, these are the assistant, but they’re a bit more than that as they don’t work alongside a professional. They don’t have a professional status though.

I’d never heard of them but as with many things, they have different names in different areas…….in Humber, for example, they are ‘Support time and recovery workers,’……no wonder we get confused…..

They help people who don’t want social care not to fear it – so that is where this research comes in….we need to find out what makes people happy to receive social care through the interaction of these specialists support workers.

We want to fill those blanks on the chart…

We’ll do this through interviews with people, home care providers, specialist support workers and also have focus groups with people who supervise support workers.

I asked does the system break down once the specialist worker overcomes the fear of the person, is the person transferred back into ordinary social care system and collapses once more? – this is what we want to find out. In theory there would be a handover but does a care worker listen and take notice or does it end up back to square one?

Me and David contributed with soooo many questions and suggestions… all started to get very exciting about us being involved with the ethics committee, with focus groups, interviews and evaluating data…..but that’s me getting carried away in the excitement….

Many research applications are pie in the sky, the ideal situation and I stressed the need to be flexible and getting this over to ethics. How, yes would would like to be involved in many ways but we have to be realistic and so have a reality check on involvement as well, which may change as the study progresses.

After lunch, Louise went into the approach process – and we were shown the information sheet to comment on ……..we preferred the one that was set out with pictures instead of just words….and I said how I love research but I hate getting the information sheet with so much detail…and I brought up the feeling left when the researcher disappears and we’re left with the endless sheets of paper, all official looking if words only – if it’s official looking and just with lots of writing we might worrry about what we’ve signed up for. If it was friendly with images we may feel less stressed.

Sooooo many good ideas, issues highlighted and suggestions given. Louise asked our advice for how to start the interview. I said setting the scene is the most important part of the meeting – a friendly person, establishing rapport is far more important than asking the questions straight away….

Another fabulous study to be involved in….. Maria Helena is at a later stage than me but her gentle husband, David, is wonderful with her. Maria Helena shared laughter and made her presence known and shared hugs and chatted, lapsing into her native Spanish. She told me off for calling her Maria – ‘Maria Helena’ she told me and quite right too! She kept hugging Louise and saying how wonderful she was. That was Maria Helena’s contribution – Louise would be carrying out the interviews and her warm friendly disposition appealed to Maria Helena. If she hadn’t had the right character she may not have got that response. …Just because people have lost full power to communicate, doen’t mean they can’t communicate, can’t contribute. Maria Helena communicated loads in HER way.
It was lovely having her there which made the group photo even more special

Us as experts by experience bring something extra to the table. The academic experience and the expert by experience partnership is one that can only make research better……

A wonderful animation that includes me by a talented student….

Some emails that come into my inbox make my day and last Thursday I arrived home to one that made me smile after a wonderful but exhausting 3 days with my playmates in London…….

It was from Thomas Purdue……now initially I couldn’t for the life of me think who this person was….he’d sent me a link to a film I’d been involved in. I had to go back to him and ask how I knew him and to tell me the history of our connection…….

It was then tiny sparkles of memory floated around…..Thomas is a student doing a masters in animation and he’d asked me to record some words for film was his major project throughout his course, which meant taking it through the whole production process. He said

I decided to make it after my partners grandmother was diagnosed. We realised the severe lack of understanding we all had as a family for life with dementia.
Well his finished animation is now ready for the world and I can’t wait to share it with you. I think it’s wonderful. The voices are real people, with real experiences and I quite like the animated interpretation of me – especially the red top 😊
He’s sending it out to charities now to use and hopefully raise some awareness with something a little different from the leaflets. I sincerely hope they use this talented students kind offer……here it is….it’s called Remembering Dementia……..

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… 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…… 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… 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……

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 😊

Graduation day for our class of 2019 yesterday……….

It was earlier than usual when my alarm went off yesterday……

When I’d gone to my taxi people to book my taxis for the week, I got to “Monday at 6.30 please’, and a look of horror came over her face when she said how they’d been inundated with airport runs that morning. I suppose it’s the first week where children are back at school so many are flying off for cheaper deals.

She fiddled with the bookings and eventually said they could only pick me up if they can squeeze me in at 06.10….😳…..well better than nothing, but very ‘twirly’……..

It was proper dark when I opened the curtains.The white owl was hooting in the paddock across from my window. I could hear it so clearly but couldn’t catch a glimpse. I switched off my light in the hope I’d see it’s white image swoop through the field, but it wasn’t my lucky morning, as the hooting continued……and I got dressed…..

Turned out I was sharing a taxi with a fellow villager and we trundled the back way through the Westwood with a beautiful sunrise in peaking between the trees….

Being mega early into town, it was earily deserted…..only the paper shop stirring and waking for the day. I didn’t want to sit in a deserted bus station so I ambled up and down the paths outside, waiting for other travellers to arrive to keep me company.

The bus finally arrived and trundled across the Wolds to York…….only for it to come to a halt and to hear those dreaded words….

I’m having problems with the engine so I’m just getting some advice”……🙈

We finally edged our way towards Pocklington but then had to get off and admit defeat….they’d send a replacement 🙈🙈🙈🤯…..luckily the hoards of school children all decided to get on another one that came for York, that went the long way round. It meant that when ours did turn up, instead of it being chocca there were 6 of us and we made it into York in record time as we didn’t need to keep stopping for the kiddies……

Is it because I rely on public transport all the time or is it because I’m jinxed and unlucky with my trundles……🙄

Anyway….Damian finally pulled up in his car and I slid into the seat, as my body was like a block of ice, and we trundled onto Lidgett Grove and set everything up ready for Minds and Voices AND our new playmates! Whenever a course comes to an end, it always worries me ‘what happens next’…….well, with our course at least people have the option of being able to join Minds and Voices. Not all of them will as some don’t live in York, but they can if they wish.

Everyone started to arrived, new friends and old and we had a full house……..with cackles of laughter and hugs galore………❤️

It was the last day of our course along with a Minds and Voices meeting so our new playmates could get a flavour of our monthly meet up.

Damian started off by going round and we simply said our names. We shared our thoughts about our lovely playmate Liz, who sadly died at the weekend, but we celebrated her smiley face and her cheery disposition……

We also celebrated 5 years of Minds and Voices today…..

We looked back at how the course went and reminded ourselves what each week had been about.

Damian had produced a sheet of what we’d learnt during the course and the comments we’d made.

Professionals can only learn so much from a book, we’re the experts”

The supporters said “Properly listening to people with dementia helps”

“We can learn from each other’s experience”

“Challenging behaviour is what other people think we do”

“You might not lose all the billions of cells in your brain, but if you lose the one that makes you leave your shopping on the bus, it doesn’t help”

“There’s no danger of us sugar coating dementia, as we all have our wibble moments”

I think I’d got so cold en route today that part of my brain was still thawing. I wasn’t on top form …..but I kept going… typing giving me something to focus on….

Damina went through the top tips we came up with…..

On relationships, I said, Living alone is good as it means no one moves things around, and Elaine piped up, ‘well I’ve been married 50 years and Eric has never lifted a finger so nothings been moved for me’…….🤣😂🤣😂

Another theme was around what services should be available or done differently…… Damian created ‘Our Manifesto’……

Which included:

We should not be fed doom and gloom and no solutions…”

Professional have historically only dealt with people in the later stages so often find it difficult to understand those in the early stages…….

Our new playmates were then asked to complete another Hope scale form. They did one at the beginning to say how they felt, but were now doing one again to say how they felt now

It was then time to give them their certificates……….and photo time for everyone…..

Brian didn’t fancy standing up and I got him with a grumpy face, but another photo caught him smiling as he said of life: “I’m just passing through…🤣”

We finally went round and asked our new playmates what they’d got out of the course:

It’s been a saviour for me”…..

“Very grateful for it…..”

“Cathartic – Better than keeping it inside”

“Very informative and nice to meet everyone – I’ve really enjoyed it”

And our last comment was a huge smile………….

I ended with:

I find the wonderful thing about people with dementia coming together  is meeting such wonderful new people. Dementia has enabled me to meet soooo many wonderful people that I wouldn’t have met if I hadn’t have been diagnosed with dementia. It’s like a kick in the teeth for dementia as it’s a positive…..”

I had to leave at lunch time for my buses, but everyone stayed for lunch…….hugs, goodbyes and smiles ……..wonderful……exhausting, but wonderful…..

And a nice calm piccie of the River Foss while I was waiting for one of my buses…..

Week 6 – Penultimate week before our Graduation party!

The final session of our Good Life with Dementia Course yesterday before everyone is invited to join Minds and Voices. I often struggle with courses at the end as I think, ‘What do people have now?’ ‘What happens week 7? Well with our course people have the option to join us at our monthly Minds and Voices Peer Support get together and then possibly become tutors themselves if we get funding for another course.

It was proper dark when I opened the curtains and a chilly bathroom greeted me as it was too early for the heating to have cut in. The taxi man arrived with his usual wave acknowledging his arrival and we trundled through the autumnal mist. This led to conversations about the weather of old; how some would call it a fog, but in truth it was a light mist.

I remember once when I was still married having to walk in front of our car, as the fog was so thick you couldn’t see anything……..funny how it was me walking out in the cold…..🤣😂

Anyway the bus arrived and we trundled our way across a mistier Wolds……feeling positively winter like…..I sat downstairs next to the driver as windows were steamed up with the cold and this gave me the advantage of his windscreen wipers…….

We arrived in York finally after long long queues of rush hour traffic to find the sun had broken through and there were 2 hot air balloons having a lovely flight over York…..

Damian, also held up in traffic, was late picking me up so I was freeeezing by the time I hopped into the car…..after a catch up and more queues of traffic we finally arrived and had to get a wiggle on to set up the session.

Stephen, an Occupational Therapist, from York St John University arrived and after talking a while we suddenly realised I would be talking to his students in a few weeks.😳😱😊

He was here to observe but also to promote his research on ‘shared activity’…….where one person with dementia and a carer take on an activity as a partnership. A bit like me and my son inlaw with his garden. I teach him how to do his garden and he supports me with all the heavy stuff so I don’t get in a pickle. It’s a win win situation…..neither one of us takes over.

Alison was also here from Leeds Beckett Uni to take us through our paces with her ‘Keeping Active – research into movement…..’ study.

So, everyone arrived. Today I was chief press officer as we had, Peter, Rita and Elaine as tutors……
Damian started off the session. Our session today was about Adapting to the world around us, including driving, activity and simply acceptance that we CAN keep engaged.

We handed out Agnes’s book Talking Sense to each of our learners and I told the story of how Agnes came about writing it.

We then spoke about whether we spoke and told people people and everyone is different. I showed my card from Young Dementia UK that we started piloting yesterday. Everyone said how the wording was much friendlier than many they’d seen

When asked whether people speak about dementia, one said,

My wife gives me a lot of courage that I can still do things – I’m very fortunate”

and another:

I don’t flaunt it but I get on with it as best I can” 

Peter, our tutor was having a ‘wibble of a day’ but was wonderful in sharing his feelings. It was a bad day but he felt safe sharing it amongst us today.
It’s great to be here speaking with people you can speak with” he said……..wonderful….

We went onto medication and how the Department of Health and Social Care ignores the social care aspect of dementia……

After a tea break Alison from Leeds Beckett was next. The lovely Professor Clare Surr is her supervisor. She was there to talk about keeping active and the impact it might have on our life. Being able to function is essential to retain our independence and quality of life. We want to retain our physical function so we need to stay mobile. She went through certain tests used for physical function….however these are just guidelines.

The scope of physical activity is huge from housework to team sports.

The important thing is to SIT LESS…….she spoke of how long we sit on a bus and how long we spend on the computer and I hid for that bit 🤣…….Some sitting is good…..sitting with friends, doing hobbies, eating………Try to get up every 20 minutes, it’s a worry if people are sat for longer than 4 hours at a time…..simply break up sitting time………

New guidelines came out last Saturday from the Chief Medical Officer for everyone …..:

Some activity is better than none

2 days a week activity to improve muscle, strength balance and flexibility

150 mins per week of moderate intensity aerobic activity building up gradually

Break up prolonged periods of being sedantary with light activity when possivble at least with standing…….

80% of the population know that exercise is good for you but a much lesser number actually puts it into action. What’s good for the heart is good for the brain……..

Peter piped up ‘My brain is elsewhere, goodness knows where” ❤️ Peter is further down the line than me but although he was having a bad day, he came alive during the exercises. He whooped with joy as we flung our arms around and for a moment his bad day was lost…  – wish I could have captured that moment…..We did some wonderful flexibility exercises and had fun wobbling on one leg, seeing if we can do things that require coordination – very good fun………and brought a smile to everyone’s face.

She left us with: Sit Less, Move more, feel good, have fun and keep smiling……….The best activity is the one you WANT to do………..

Last tea break time and bringing the session to an end…….talking about the graduation day next Monday when we review the course and their thoughts on what worked for them.

So Damian finished off asking what’s been good about today……..

I’ve not had a good day today but I’m glad I came here ”

“It’s encouraging to be with people”

I had a lovely time as always. A mixed day for many people but all appreciated being together…………

Once me and Damian had tidied up and I‘d done my washing up duty, we set off for Damian to drop me at the station and a wave of exhausted came over my whole body. I was once again a Duracell Bunny whose batteries were spent. As me and Damian chatted, it was sad to hear that some sceptics had said that our course would work simply ‘cos I was there. 😔 But many of the decisions about the content and also about our research was discussed by my playmates in Minds and Voices when I wasn’t there.

So never underestimate people with dementia, no matter what their stage as everyone has something to offer, they just need the right support to enable them to be involved, just like we have in Damian………….that’s why I love Minds and Voices, equals at different stages of dementia…..

Articles for World Alzheimers Month……..

I was recently asked to write two articles in preparation for World Alzheimer’s Month and  they’ve both now been published. It never ceases to amaze me, when I’m sent the links, that I remember nothing or only a hint of ever having done them.  Yet being asked to write is so important to me.

I know I’ve probably said this a thousand times but I can type as though dementia never entered my world. I can type words far quicker than I can think and speak them. Watching my fingers type is often mesmerising as the sentences they put together so easily often astounds me. Typing is my escape from dementia so I’m always more than willing, if time allows, to write articles.

Anyway…the first is one on NRS Healthcare, which has many lovely piccies I’d forgotten about…

and the second for the Elder Magazine which was in a Question and answer format…

A Trundle to Derby……

Yesterday saw one of my few trundles further afield this August as I was going to Derby to promote Admiral Nurses with our LEAP (Lived Experience Advisory Panel) group. A long blog but then it was a long wonderful day….

We were going to meet a DEEP group called ‘Lifting the Cloud’ at Derby University campus. Sometime last year LEAP came to visit me and my playmates at Minds and Voice, doing just the same thing. You can read about their visit to us below

The sky looked promising outside my  window as I got up….

Once again, because events are few and far between in August, it seemed strange and alien. It takes more effort, more concentration as the routine of going out and about has been lost over the summer period. But once again, the organised me, had everything already booked weeks ago and instructions listed for me simply to pick up and follow……..phew!

Autumn seems close by as the early morning was darker than usual and the cool nip in the air made me thankful for my fleece. But the first train to Sheffield was on time so a good start……

And nice familiar sites calmed the strange feeling inside as we trundled by the Humber

Both trains there were on time. No cancellations, no delays to stress through…….very strange experience…..ha!

The aim of the meeting is to tell people about Admiral Nurses. I remember some of Minds and Voices not having heard of them. If you’re diagnosed with cancer you’re automatically given access to a Macmillan Nurse (specialists in cancer) whereas with dementia, we all know the potluck nature of support available. Admiral nurses (specialists in dementia) are still a relatively scarce resource and we’re trying to promote more areas to commission their services.

Toby met me at the station along with Rachel and Diane and we had a cuppa while waiting for everyone else..

We made our way to the Uni and were met by the folk from ‘Lifting the Cloud’……..

George and Suzy started off by welcoming everyone……and we did the postcard ice breaker
We had to choose one from Suzy’s collection to say what makes us happy..

We then sat next to someone we didn’t know, to explain why we chose the card…..the room suddenly came alive and chatter and laughter filled the air

We went round the room and just said who we were and showed the postcard we chose and said why……a lovely way to get to know everyone

We then went through our Agreed ways of working……we don’t have ‘rules’ as we like to break rules too much…..😂

The group was very mixed, many people with dementia and many supporters……and a lovely group it was…….

Rachel, Hannah and Susan then said a bit about Dementia Uk and Admiral Nurses……

Rachel first spoke about Admiral Nurses and what they are. We have to assume that people don’t know about their existence especially when they don’t exist in the area, as is the case in Derby. The Admiral Nurse Helpline can be accessed by anyone from anywhere though. For anyone interested it’s 0800 888 6678 and open 7 days a week – 9am-9pm weekdays and 9-5 at weekends.

Next up was Hannah who cares for her husband aged 55, who was a police offer. They have 2 young children. He was diagnosed 4/5 years ago and Susan, whose husband is 71 and is now in a Care Home.

They both spoke about how they came about Admiral Nurses. They simply told their story which is always so powerful….

They just held our hand, through what was a horrendous experience’ said Hannah. “She listened to me and gave me the strength to carry on”. “She helped me meet other families, which was so important for the children”.

Susan…who lives on the coast in North Shields, then told her story….suddenly Admiral Nurses answered our prayers and arrived in our area. “More than anyone we met, our Admiral Nurse,Rachel, gave me the confidence by telling me I was doing a good job and visited us regular. Rachel and my husband had a lovely relationship. “They give that valuable commodity of ‘time. It’s been a life saver for us”

It’s hard to share personal stories but the value of hearing others experience must never be underestimated…………as the effect on the room clearly showed……

Dementia UK are continually working with commissioners to persuade them why Admiral Nurses are so valuable. The Hospital in Derby is about to advertise for an Admiral Nurse so that will be the first one in this county.

“Finding the right support at a time you need it is very hard to find” so one nurse won’t be able to support everyone, said one from the local group……..””we don’t want to raise people’s expectation”………..but then Jean said we sadly have to start small and use it to prove the benefit of their existence. “It’s really good news but don’t tell anyone”……which was quite right, but as George said, “Unless commisioiners have evidence on the table that it will save them money they won’t employer them, but we do have the evidence, we just need them to listen”

Break time…..

During break I chatted with a lovely man living with dementia and we talked about how we get by at home. A lovely chat……..exchanging thoughts and experiences … living alone, he, with his wife, who now does everything……

After break, George went through the reason for the existence of our LEAP group. To enable us to lobby for more Admiral nurse services……

Admiral Nurses save more money than they cost and we have the evidence”…….said George through reducing hospital admissions, visits to Gp’s and there is a NEED just like Macmillan Nurses who invaluable to those with cancer…..

Wendy from Making Space which runs the Derby DEEP group, then filled us in on what their group has done, work in Doctors surgery in conjunction with Young Dementia UK, East Midlands trains and the University making a film to be used for training East Midlands staff.

Sue, one of the carers then spoke about what she gets out of the group. The diffulty they had around the diagnosis process. Realisation of the need for support and joining the group.
It’s difficult being on the other side of the fence when you need help”……they needed to find something that appealed to them and tea parties and dementia cafes was not for them. But then the DEEP group was introduced to them as more of a debating group, a gathering……..”we started to feel part of something. It’s not just about what you DO there, what’s more important is that feeling that you’re not alone and It gives us intellectual stimulus”
“DEEP was a gateway into something we would benefit from…..”

We then split into two groups, people with dementia and carers……..

We answered 2 questions

Can you describe some of the things your group has done?

How does your group ensure the voice of people with dementia (including different stages) are heard in the group…?

They’ve been asked to visit local places to see if they’re dementia friendly…..Bolsover Castle being one……

Me, and Diane then said why we liked being apart of LEAP and I said it was a lovely relaxed family and everyone’s voice is important. We respect each other’s views……

Both groups then gave a brief resume of the discussion……

The carers group spoke about the uniqueness of DEEP groups……and how specific personalities are attracted to DEEP groups. Toby then gave the summary from our group. Meetings are made accessible and people are given time to speak when speaking is difficult. It helps people get the confidence to challenge…..

So after a nice lunch we had Paul Edwards – Director of Clincal Services for Dementia UK

He spoke about where their future is going. They want to grow in primary care, in Gp services. They have a campaign coming up that will work with GPs that sounds very exciting and could make a real difference and provide the evidence they need and may get GPS on board.

We then split into 3 groups; one with Paul talking about the campaign, one with George talking about how people can influence commissioners to take on Admiral Nurses into the area…….I joined the 3rd group with Suzy just chatting about anything we wanted. It turned out we were 4 people with dementia who joined her, which was no surprise. I joined her as it was the time of day when I was starting to go downhill…….

We spoke about sleep, time and how exhausting it is living with dementia. I said how the time of day was catching up on me

But we all said how tired we were as we’d been listening and doing an awful lot in the morning………how exhausting living with dementia can be… frustrating it was but Lyndsey said, ‘But we only have one life so we have to live it”……….

A quick break was followed by feedback from the groups before we wrapped up. I was sooooo tired…..

There’s already specialist cancer, diabetes and Parkinson’s nurses to name a few… why not specialist dementia nurses – Admiral Nurses?

Admiral Nurses could potentially fill the gap after diagnosis, if only they were more….

I put my iPad away at this point. My brain had clearly pulled the shutters down and turned the Open sign to Closed. It was the first full day trundle without staying overnight for ages but what a lovely day with wonderful people and meeting new playmates…… was worth the exhaustion…..