Category Archives: Education

Speaking to Care Home Managers………

Yesterday it was another early morning trundle, but this time to London. I’d been asked ages ago by Liz Wardell from Signature Care Homes if I would speak to their managers. I’d spoken to Care and Activity Managers for the group  at Gerrard Cross back in June but this time Liz wanted me to speak to General Managers and their Deputies…..I’d said yes, as looking back at my blog, Liz had looked after me well that time.

Instead of me travelling to the M25 corridor, Liz had found a venue near Euston, so a walking trundle for me from Kings Cross and no overnight stay needed……perfect!

I’d spent the night before trying to work out if I’d made a major gaff on my calendar as a conversation I’d been having with someone by email was ringing alarm bells but I couldn’t work out why…….I’d checked my calendar, I had the event down for next week, but something felt wrong…….

Woke up in the night with a sudden realisation that I’d said yes when I was actually away….I’d got numbers and months muddled ……..nothing I could do in the middle of the night so snuggled down to relax in my sleep wake sleep wake mode and I would sort in the morning……

Sure enough, I looked at my calendar and had a squiggle on Friday 1st……that should have been on Friday 29th……🙈🙈🙈…….I immediately sent a silly o’clock grovelling email to apologise for my stupid blunder…..it was an event I really liked as well….😔 and I hate letting this person down, but sadly nothing I could do except apologise………😢

The next panic happened in the taxi to the station…….🥴……I always put things in a certain place….in the same place, in the same way……this goes for my pass case that houses my train tickets…….and my pass case is always in my right hand pocket when I’m travelling……

The taxi man had pulled up 10 minutes early and caught me on the hop…..me thinks my routine must have gone out of the window. I was sat in the taxi, and suddenly put my hand in my pocket for the reassuring feel of my case…..and nothing……there followed a frantic search in the other pocket…..nothing……in my purse…..nothing…….he obvously heard me fidgetting and asked if I was ok….I wasn’t……he pulled up, switched the lights on and I searched and searched……I then thought I’d look in my purse again……and it was where it lives, only the opposite way round where I couldn’t see it….🙈🥴🤐🤯…panic over……..reverted back to calm state…..

It had been a clear cold night so the ground was white with a covering of frost….and the sky over the Humber made the early start worth it…..

My fellow passengers sat heads down buried in their phones or work. Too much pressure of deadlines, of wishing for the weekend, of wishing for the end of the day…..I wanted to nudge them all and say, ‘look at the beautiful day!’……..blink and you miss the morning loveliness….

And sadly the landscape was still flooded as we neared Doncaster …..😔

 

The landscape, the whole trundle down, was a feast of loveliness….as mist turned to fog, turned to pure white…..just a beautiful day…..

Once the fog had disappeared, more delights in store…..as the world began to wake…..

I’d been to the venue in Euston street a few times before according to my blog so knew how to walk there from Kings Cross….but , of course, things don’t stay the same in London for long and the roads were blocked by building work that I was hoping to go down…🙄….so instead I had to put Google maps to work and it took me down unfamiliar streets and alleyways….

Once it told me I was there nothing looked familiar, probably as it was the other end of the street, but luckily I saw the hotel banners flying in the distance and within minutes of me texting Liz she appeared and sorted out a cuppa for me while they finished off the previous session…..

We eventually ambled upstairs where I was met by a roomful of managers, all strangers at this point …..they had given me just over an hour to speak about this that and everything.

I included the subject of the debate at Uk Congress, “Environmental Lies”, and I said,

Our emotions and feelings are more powerful than detail so how confusing to think you’re outside yet not feel the outside, not smell the newly mown grass or feel the fresh air on our faces?”

I spoke about tracking and the ethical issues, senses, the power of talking,not isolating residents by saying,

Local communities,  can provide us with the stability we need as everything else around us changes and make us feel part of the world outside.”

I rambled for ages before it was time to shush and take question…..and there were many….I wasn’t typing so don’t remember what they were, only that we had to stop for lunch. So many kind people came up to me afterwards, expressing their thanks, asking more questions, and some just for a hug……and then I asked if they’d mind a piccie…..and they all obliged….

It was a lovely day with me thinks a few lightbulb moments, especially around value or not of  environmental lies……I had lunch with them and chatted more before heading back to the station…..a lovely day and a big thank you for Liz for asking me once more…….

Nice to leave London in the light too

A link to a haunting, beautiful trailer……..

Today is a simple blog for me as I head towards Penrith for a difference type of Conference for me on Saturday, which means I’ll be able take a quick trundle on the bus to my paradise of Keswick hopefully , just to say a quick hello to calmness…….think I said ‘yes’ to going before asking what it was a about ….🙄🙈😂

It’s 2 links……one, a vimeo made by the talented artist, Suki Chan, with some input from me…..on Consciousness…..I truly love the bee hive at the beginning that resembles the folds of the brain…..along with the haunting music that matches perfectly….it’s a short trailer as we’re planning on doing some more work around this…..it’s my voice at the beginning talking about the fog I experience…..

The second is a series of words and pictures around the same theme, some taken when Suki visited me at home…..”Suki Chan applied for funding through Developing Your Creative Practice, to focus on researching and developing CONSCIOUS. A new project that will explore consciousness, Artificial Intelligence and dementia”……….you need to swipe up from the beginning…

https://www.artscouncil.org.uk/long-read/conscious

Can’t wait for the next phase of working with Suki……..

Final Day of UK Dementia Congress………

Before I start the final day’s blog, ………..

Last month was my dads 100th birthday, if he’d still been alive and today Nov 7th, would have been Mums 100th birthday too………so happy birthday mum……..

We met for breakfast and I was filled in with the raucous singing and shennanogens from the night before……..😂

We then went out in the pouring rain and went over to the Racecourse with Philly……suitcases armed and ready for the journey home later in the afternoon…….

Me Ron and Howard sat with Philly discussing our session at 09.10 on Dementia Enquirers….we were up second after the EDUCATE Deep group………

Making our way up to the second floor we found Buz and Steve Clifford from EDUCATE waiting for their bit to start. Our session was called ‘Reframing Narratives…….’

Buz and playmate Steve started off

They were talking about people being actively involved at delivering training to professionals…..EDUCATE wanted to future proof their inclusion as dementia takes hold by making snapshot videos ….the course has been produced and delivered and put into an interactive training day…..

People with dementia are the best people to teach professionals about what our needs are…” said Steve

When Steve saw an Orthopaedic Consultant his wife asked if it could be anything to do with his dementia and he said….

No, dementia is all about memory”…….so we’ve a long way to go to educate professionals…..🙈

We are the professionals in dementia.” Said Steve

Video clips are embedded into the course throughout the interactive day for those being trained….each clip shows an issue made by people with dementia with that particular issue and then staff are asked to come up with solutions in their work area. We showed Jo having difficulties putting on a cardigan, and then learners had to discuss ways they could help…learners are asked to think about how they would feel if they had these problems…..

They asked the professionals, “How would you feel if a stranger came into your house and moved things around?”…..people with dementia spoke about the kindness of people that has the total opposite effect….’Tidying up” can be a nightmare for us…….

Every person with dementia still has abilities and strengths “

“There’s always something you can laugh at…”

The course aims to challenge the myths surrounding dementia……and Steve finished off by saying :

I’d like you to see…………just me…”

Next up was us….talking about people with dementia being in the driving seat of research…..

Philly started off by telling the audience about the funding, about the fact that we’re looking at the ethics process, the language used in the academic world and the learning of new skills along the way…….

The first question she asked me Howard and Ron  was “How do we feel being part of the pioneers?”

I said……”It feels like we’re at the beginning of something great……we’re not naïve enough to think we can do it alone without professionals help, but academics will be invited through our door and asked questions on our terms, work with us on our research questions. We can challenge ethics , we can challenge academic language….”

The final question was “What does it mean to us for people with dementia to be in the driving seat……”

I said how it shows ”the CAN instead of CAN’t when you have dementia……It will question current perceptions about our abilities…..”

Ron said “The days of us being the guinea pig are over..”

Final presentation was by David Truswell on supporting people living with dementia from black Asian and minority ethnic communities…….

It was centred around his book which concentrates on Iris, Afro Caribbean’s south Asian, Chinese and Jewish and has chapters by people from those communities…..

The experiences may be similar but their cultural experience within their own culture may be different and require a different approach….dementia is often within mental health services and many of these cultures have a fear of being shut out from their community if it’s known they have dementia….people can revert back to their mother tongue or a combination of both which, as you can imagine can cause huge difficulties…….

Services have short comings – they believe families will ‘look after their own’, staff will be unfamiliar with an interpreter, staff may be unfamiliar working with a family rather than just an individual, lack of information on community resources, little known of the mix of traditional medicine and pharmacology…….

I asked David, Were people willing to talk to him? – his response was just what I wanted….that people are always willing to talk and he is frustrated when researchers say people are ‘difficult to reach’…..

Their website to know more is www.demace.com Along with videos……

It all went really well…….

We made our way back down to the stand where I sold the last of my books and Dory was doing a roaring trade on giving our leaflets out along with Agnes’s Talking Sense booklet which can be downloaded free here….

https://www.hammond.com.au/images/Talking-sense.pdf

We were all coming to life as people came to chat at the stand but then as soon as we were alone we were jaded flowers……..it had been such a long couple of days, but just one more session to attend after lunch with Damian and Howard on our Good Life with dementia course………..

Murna was the chairing  the last session of the day and Howard and Damian were going first due to our train times….

Howard said being diagnosed “felt like falling off the edge of a cliff”….we shouldn’t be fed doom and gloom ……. Servicing are not providing what we need…..our Good Life with dementia course aims to provide hope…

We then watched the 5 minute film all about our course, designed and delivered by people living with dementia….where playmate Stuart said, “it’s not the end, there’s still a life ahead….’

Learners on one course could be the tutors of the next”

Lovely to see my playmates on the video…..a great way to end Congress………

My quote of the day has to be from Aimee…….who says this after temporarily falling asleep………..

My eyes are having a ‘long blink’…….” Must remember that one……😂

 


Thank you to all our ‘able enablers’ for making this a stress free and fun time…….just Steve Milton and Rachael Litherland missing! Without you organising me, I wouldn’t feel safe doing all I do…..

And to all the people who came up to our stall to chat……..

 

Wednesday at UK Dementia Congress……

After a sleep wake sleep wake night, I finally fell asleep as my alarm went off at 6🙄…..it was an e x h a u s t I n g few hours yesterday at Congress so goodness knows what I was going to make of a whole day…..my head had been partying all night and all I really wanted to do was snuggle, but loads on the agenda today……it was a lovely cold crisp autumn morning as I walked from the annexe …

It started off with an early breakfast………Rachel, Dory and Agnes were already there and Aimee joined us, having arrived at midnight!😳…….we made our way to the racecourse and set ourselves up behind the DEEP stall

Lots of people came for hugs and hellos …….and then it was time to go into the main hall and set up for the plenary…..we redesigned the stage 😂 as we wanted to sit in a chat circle instead of behind tables, but the sound man happily moved the main tables, brought 3 chairs and gave us hand mikes……..

After the initial introductions it was our turn. Jeremy Hughes was caught up in rail delays so Prof Dawn Brookner stepped in to introduce the 3 of us….and be chair for the plenary session……..

We spoke about ‘Technology and how it can benefit us in the rights hands, however………’

Agnes played Michael Parkinson and chatted to me and Ron, about 3 important points……Alexa, social media and companies involving us from the start when developing products for us……

Ron said on Alexa, “Alexa ASKS me if I taken medication, she doesn’t tell me”

It went well………and Agnes ended by saying

We don’t have all the answers, but we all agree the best hands to control technology are our hands”

Next up was 2 people from the TIDE carers network……..they spoke of the importance of connections. The power of meeting others in a similar situation ……needed by us all and sooo important me thinks…..

I’ve always said supporters and people living with dementia live parallel lives, rarely meeting but our individual needs are equally important……

The final speaker, lost me, he spoke too fast for my slowing brain………he too spoke of technology to monitor health care and general well being –Which  highlights the deviations from that persons normal behaviour……..…… I went to the loo, had a wander, as I was looking for my friend Prof Pat Sikes who was sneaking in for a hug……. and was told by the organisers not to disappear too far…………

Because…….at the end of the plenary I was given an award…Jeremy Hughes had finally arrived after train delays and he presented me with the award….but I asked if I could say a few words,,,,,asked all my playmates in the audience to stand up and dedicated my award to them as they’re ALL exceptional in my eyes…..

It was very humbling being surrounded by people wanting to give me hugs and congratulations but I then had the lovely surprise of Prof Pat bringing someone to meet me – her Thom!!! All the way from Canada! ❤️….

So many hugs, so many hellos afterwards….but I had to whisk my way to the next session which was Minds and Voices running a group upstairs……we knew not many people would come, but we also knew that we simply were pleased to be altogether ….

I’d made new badges for everyone from the badges kindly donated by WH Smith’s Trust……..

We started by sitting in a circle with all our visitors and going round the circle saying who we were………

We then went onto a conversation about relationships…….about the various thoughts on the words ‘Carer’……..how ‘carer’ implies a one way contract when it should be a two way process as any partnership……someone said how sometimes we have to put a different coat on and accept that society demands we have a label……but Rachel said:

if we continue to secumb to ‘what society demands’ we will never change the labels it gives us…….”

Chris said…….“We’re all carers’ and care for people, caring for our fellow humans…….”

We went onto new members and how daunting it can be to join a group……I told the story of playmate Elaine, who joined and didn’t speak for months and then suddenly during a discussion on what we should name ourselves, and Elaine spoke her first words, `”Minds and Voices”……and now we can’t shut her up 😂🤣😂

She said…….“Minds and Voices brought my life back…”

I went from feeling useless to useful”…..said Chris……….

That’s the power of peer support……..❤️

It went so well and now time for lunch ………..I was exhausted, as were so many other playmates…..so I simply sat at the DEEP stand and chatted to people who came up to chat…..

Philly managed to drive here in the end, even with her dodgy back…and we all sat amicably but exhausted….

I decided I wouldn’t go to the evening meal as I’d eaten at lunchtime so had had my fuel for the day……so Philly drove me back to the hotel around 5ish for me to hibernate for the evening…….

Another wonderful day meeting lots of wonderful people and lots of Twitter pals….but now needed to recharge for the final day…….

Last full face to face Induction…..or is it…?

Yesterday was the last of the old format Trust Inductions for my local Humber NHS Trust new staff. When I first heard they were changing the format I was a tad disappointed as I felt it would mean new staff would miss out on the face to face talks, however I underestimated their thinking…….

I remember the Induction at  Leeds Trust, when I worked there, being overloaded  at the time I was there and Humber was no different. It can be exhausting simply listening all day, with PowerPoint after power point…..just the same as it is at any conference……death by PowerPoint has never been a favourite of mine..

However I was delighted when I got an email from my lovely friend, Cathryn Hart, saying that those responsible for the redesign were asking me if I’d like  to continue to talk about my experiences of research, living with dementia, what research and why it’s really important that NHS staff give people the chance to take part.

So now they’ve given me 30 mins as their Patient Research Ambassador  to ramble to all new staff starting in the new Year…….in a condensed new redesign …..glad they havn’t got rid of me…

Anyway, back to yesterday……it wasn’t a good brain day and I’d woken feeling quite discombobulated but luckily everything was in my pink file read so no thinking to do…..Sarah from the Research Team, picked me up at 9am as we planned and we caught up on the antics of Lola, her lovely dog…..she’s been on adventures to the Lake District

Once we got to the Trust Headquaters we ambled through the car park with beautiful autumn colours

…..stopped to sign in with the lovely friendly receptionists, who always chat to me and there I finally found a knitted poppy to buy to wear for rememberance day ….we went upstairs to the office and had a catch up with Saba, another lovely team member….

As it crept towards the time of our session, we trundled over to the lecture theatre to see how many new starters there were…….

……..and there was a roomful! Looked like the most we’d ever had….

We did our usual double act. Sarah caught me off guard by asking me an off the cuff question at the beginning  but my brain still wasn’t playing ball and I stuttered and faltered. She probably asks me the same thing each time, but this time the words wouldn’t come…

No one else would have noticed as they don’t know me, they don’t know the usual me. So when it was my turn I explained from the start, how it was a good job I’d got the words written down, how I could type far quicker than I could think and speak and simply read my piece as usual……

I ended by saying …..”Never forget you can make a difference…..”

Sarah reminded me about asking them if I could take a piccie and they happily agreed……


Such a big group, we could only get in half the room!

All NHS Trusts should have a patient speaking on their Induction programme. Could be any condition. Just to bring reality at the start of their new role in the NHS…

A nice local trundle to start off the week…….and now UK Dementia Congress for the next 3 days……..

 

Talking to Occupational Therapy students……

So yesterday was an early morning trundle to York St John Uni to speak to Occupational Therapy Students……students are my favourite species as they can change the way dementia is perceived and people treated in the future….they don’t realise the power they have to make change happen….

I was asked back in June by Alison Wadey, Subject Director for Occupational Therapy at St Johns. However, I had a minor panic when I got back from Italy as I hadn’t heard any more from her. I emailed but no response so I didn’t know if it had been cancelled or simply forgotten about. I took to my dear ally Twitter and tweeted St Johns Uni asking them to contact her. Within minutes Twitter replied as did Alison and all was sorted.

POLITE NOTE  to those inviting us to take part in anything – pleeeease keep in touch. You probably don’t mean to ,but we have dementia, after all. If it’s months ahead, just a quick email every now and then, or however you’re contacting us to keep in touch…..but definitely the month and week before. I could have just cancelled; my daughters would have recommended that, but I was talking to students….it wasn’t their fault. Also I’d bought my ticket so getting the money back would have been a nightmare……..anyway I went ahead.

A 6am taxi pick up meant another dark trundle. No piccies of the Humber as I don’t think I’ve seen it for weeks as its always been dark!….a cold and rainy platform greeted me at Beverley but a bonus, for once, was that the Hull train before mine was running late so I hopped on that to Hull, in case it had a knock on effect on mine.

Turns out it did as the York train was also delayed 🙈….and the poor Manchester folk had their train cancelled🤯

However, it eventually ambled into the station, the guard apologising ‘cos of a faulty door, which ‘we think we’ve fixed’…😳….it was one of the ancient trains…….🤐

I’d been given 90 minutes for my session with the students….I could have had up to 3 but my head wouldn’t have coped with that. I’ve done 90 minutes with nurses before, so spent the day before adding, adapting and updating that talk.

Alison was meeting me at a given place and had to take me to HR first to sort passport and the dreaded paperwork. HR had asked that I come in beforehand, but A) I would never have found it, B) I don’t live in York and C) why do some Universities make it soooooo difficult for people with dementia to be involved….?🤐🤨🙈😔

Back to the journey……although York is only about 25 miles away, it is rubbish to get to by public transport. I’d plumped for the train with it being silly oclock but wished I’d gone by the bus I catch to Minds and Voices. It’s cheaper by bus and quicker and a nicer view. But because I wasn’t paying and it would be dark, I’d decided in my wisdom to go by train. It took 1.5hrs, stopping at every place possible en route…..but at least I got to type. It was dark, it was foggy so at least I wasn’t missing the view of the Wolds.

As the world began to wake my eyes were glued to the mist casting a veil over the fields

I’m rambling, ………🙄………

Anyway we arrived in York…..late…..luckily for me it didn’t matter as I’d left lots of time but some people were heading for connections and were quite frantic…….

I ambled down to York St John, passing the river on my way and taking a moment to watch the rowers try and find a straight line….

and eventually found what looked like the right building at the Uni from my photograph and Ally soon came along to greet me. We ambled upstairs……and then down again, as we both realised I had to take my passport to HR…..🙄…..They saw it, I signed to say they’d seen it, we left…….surely there could be an easier way for people with dementia to be involved 🤔

By the time we got back upstairs again, the room was filling with lovely students. Some staff had also come.

It was being filmed for those that couldn’t make it.

I rambled for my 90 minutes……talking about this that and everything including…….

With dementia, if you’re encouraged ‘to do’ that ‘doing’ helps fight dementia for that day. I’m not saying it’s easy. There’s nothing more comforting with dementia than sitting with your eyes closed but that’s dementia lulling you into that false sense of comfort. It happens to me all the time. But when I just sit, and close my eyes, within no time at all I can feel dementia seeping into my brain. I always say I’d rather die of exhaustion than dementia and it always makes me sad to see people just sitting for any length of time.”

I also told them never to give up on themselves, others will do that for you, so let them get on with it. You never know what you can achieve unless you try…….

I showed 4 slides around perceptions – the only slides I ever show if anyd only to break up me talking…..which Prof Jan Oyebode came me permission to show and looks at dementia from both sides. For example, the resident who shouts and shoves staff out of the way when she’s up early……who really is simply getting up at the time she used to get up for work and is trying to find the way out and coming across staff trying to stop her……

At the end of my 90 minutes they could ask me any questions – I always say, ‘no question out of bounds’……and they asked many. obviously I wasn’t typing but I remember their thoughtful smiley faces – I talked a lot about the importance of their smiley face…….

One asked if the room we were in was appropriate for a practice room. I hadn’t realised it was set up as a kitchen as everything was white and I don’t find white a good colour, the same as black. But small changes would make it perfect. Coloured kettle, accessories, pictures on the cupboards, different coloured door handles…..so simple.

The time came for me to go……..many of the students bought my book and best of all they agreed to a piccie…….as I was leaving I told them that once they were qualified and out in the big wide world visiting patients…they may find they’re visiting me one day…..don’t forget the smiley face…….

Students…..our hope for a different, better future for people living with dementia………❤️

 

 

Our final evening, our journey home…….

An amazing afternoon walking the grounds of the Contesses’s castle

Was followed by our final evening meal in Italy….Molly’s children had asked if they could meet us and arrived armed with their frame for a piccie…..

The downside of our final evening was the absence of our adorable waiter Francesca….it appeared to be either his night off, or he’d had enough of us 😂 without him, there was confusion, having to explain what we wanted (he just knew) and wrong orders being brought. It was also Saturday night so mega busy, including the whole of the Italian Junior Olympic Curling team (I think!)

But, we still had a wonderful meal, a wonderful reflection of our final day. How could we possibly have crammed so much in yet felt so relaxed…..?

A long awaited bed and sleep was delayed by Saturday night being party night at the hotel….but even that didn’t detract from the joyous time we’d had…

The morning arrived and as I lay typing I suddenly realised that being here has become the norm….I tried hard to remember the ‘norm at home’….and only vague whispers of routine images entered my head….this would mean the transition back to normality was going to be tough…

My limit, in the past has been 3 nights away, and now we crossed over into 4…..the only other time this had happened, I’d struggled to remember routine when I got home and lived out of my suitcase until I found one again – whether it was the same routine or whether I’d created a new one, who knows……

I’d also had a txt from Damian asking if I was going Minds and Voices on the Monday and I had to look at the bus time table to see how I got there…..😔 I would have spent the day at home but Minds and Voices is very special to me and we had new playmates attending….

Anyway, all that was to come…..our last breakfast first…we all were a tad bleary eyed at the late night party music..but we were heading home after a wonderful adventure which dulled the annoyance……We also came up with an amazing idea for an advent calendar….watch this space!!!!

We sat outside, waiting for Molly under  cover and listened to the heavy rain falling – which made it much better to say goodbye to the beautiful Pinerolo…….

Molly arrived and, after hugs and giving Molly a thank you gift, we set off for Milan, our exit airport from Italy…..

En route we fuelled our enthusiasm once more with ideas we’d thought of overnight…….bubbling over with excitement and thoughts for the future……

 The journey to Milan was a 2hr trundle…..so we stopped en route for a drink and the loo.

During the stop Molly gave us the kindest of gifts, that we just weren’t expecting ……..

Such wonderful memories….

When we reached the airport, the nerves began to fester inside as we scanned the airport for assisted travel……however, this experience was totally different from Gatwick…….a smiley faced gentle man pushed me in the chair apologising for his little English …….he was kindness all the way……

The one hiccup was at security…….I passed my personal scanning bit fine and the people were lovely, but then they swabbed the airport wheelchair…….🙈🙈🙈🙈…….red light appeared with the words, NARCOTICS…….😱😱😱😱😱😱😱…………oh crikey, here we go, me thought………but another man came, took a swab and checked it on another machine and I was once again on my way……🤯🙄….’really…? why always me’’’? sprang to mind…….😂🤣

We didn’t have long to wait at the gate before we were being boarded via the ‘speedy lane’ but only thanks to Philly going to ask…..

On board the plane, I was sat next to a lovely woman who had the window seat, so I couldn’t take photos……but we got chatting. She took a video to show her little boy as they were going on a long flight to Florida next year and he’s never flown before so she wanted to show him what it’ll be like ❤️…but because we were chatting it also meant she kindly took piccies for me as we floated up high amongst the cotton wool clouds

Very little snow remained on the Alps, so we were soooo lucky with our flight there as the piccies weren’t as spectacular this time…..

We arrived at Manchester and the worry kicked in again, but the assistance was waiting for us, was kind and took us to Border control where we walked the rest of the way, otherwise we would have had to wait for him to go back and pick up another passenger. We simply followed the crowds to the exit and caught the train to Manchester Piccadilly ……where normality greeted us with a smile, as surprise surprise…..our train was ‘Delayed due to signalling problem”……….Welcome back to normality !!

The company you keep, the people you meet along the way, can make or break an adventure….my adventure was made by being in the company of 3 adorable people in Sarah, Philly and Molly. We laughed so much……and the kindness of everyone at the hotel, the reception staff, the manager and especially Francesco, our waiter, who went above and beyond, to make our stay pleasurable, small things that cost little,  made up for the rubbish of getting here…….

A happy memory

 

Day 3 in Italy …….

And so to day 3 of our adventure  in Italy…….our last full day…..and another long blog….

The morning was an early start as it was a continuation of the conference but today would be workshops and only half a day……we could have opted out all together but decided to show our faces until 11 and Molly had offered to translate for us…..

I’ve almost got use to the continual banging head from listening to Italian and English simultaneously …..only almost and it will be nice when it stops….

The morning was grey but breakfast was another happy occasion of gentle chat and laughter, the workshops started at 08.30, so an early rise again.

The hotel finally had their banner displayed.

What they lacked in the practicalites for dementia they made up in bucketfuls by the friendliness of the staff. They just couldn’t do enough for us and yesterday kettles and mugs appeared in our rooms…..

Anyway, the time came for our workshops and we met as usual by the settee outside our rooms……mine being the infamous 101……😂……..

We made our way in to find an almost empty room as we forgot that 08.30 is 09.00 in Italian time……😂🤣Molly arrived so hugs followed and she’d brought us some pressies……..An ‘I want to speak’ in Italian card and a map and instructions for our solo walk at lunch time to Pinerolo market! How thoughtful, but again how simple and kind

Today was all about talking through what they need to do to become Dementia communities…..from inside out and outside in, as it’s no point in organisations saying what to do if they don’t do it themselves………

Marcello started off by welcoming everyone…….

Then someone from the church spoke…..

Everything your hands find to do should be with people and for others”

Even though the churches play a huge part they said it’s important that services they provide aren’t religious…….to be there for people whatever their religion and respecting that.

That was good to hear……

Objectives today are that Marcello does the least possible……😂🤣……..and we do the work….the group work will be based on different projects they want to take forward, but the objectives from today is that sparks fly and each person can take away something they can do in their own community.

The audience was made up of politicians, mayors, journalists and professionals…..

Someone then spoke about the day. Today the objective is to be creative together because when we have fun we’re more productive. Followed by Francesca who said she’d come by train and her train was late just like happens to me 🤣 – she represents the Alzheimers federation of Italy.

Being dementia friendly starts with words and Francesca showed the DEEP guide to language……..and see the person not the dementia.

There’s a passive stigma within organisations against dementia due to the language they use to describe it. It starts with the family who ask “why should this person who can’t do anything be involved” and they’re shown films of people speaking out and ‘doing’ to show a different way is possible…….

That’s the culture that exists.

The facts from a report were quite shocking……didn’t want to type them as too sad…..

When asked what a diagnosis felt like, someone in the community called it “a divorce from my friends’ as she had  lost lots of friends through dementia…

Language used can help show that there is hope and life doesn’t end with a diagnosis of dementia……they remove the word ‘suffer’, as it’s a judgement and the only person that can use that word is the person themselves…….so they’re removing the judgements through removing language like ‘suffering’ and ‘demented’……me thinks that’s a good way to explain it….

They’ve removed the word ‘grandparents’ when talking about dementia to reflect that dementia isn’t age related……

The psychologist, leading the workshops was next, “we’re here today to create culture”

But now we need to take forward the words and cultures we’re trying to create. We were split into 4 groups and we were in group 2.

We went round and introduced ourselves. In our group we had a geriatrician. Vice mayor, psychiatrist , worker from the refuge, radio journalist, town governor, health worker/social policy officer, Green Cross worker. I used google translate to say my bit 😂.

Victoria translated for us throughout the workshop – she is Vice President of the Waldensian church organisation…….an American who has lived here for 35 years and so nice. Her aim in life is “Putting the last first”….❤️

Molly was leading our group and explained the process…….we have 30 mins to discuss, take off our professional hats and think about what we can take home to bring about change.

The vice mayor spoke first – A well run town knows how to accept suggestions…..what little things, little signals they can give to make people with dementia feel comfortable.

One frustrating thing it hasn’t spread, and she never wants to hear any citizen in her town say the word ‘demented’…….

Another person said they needed mentors to help know where to start……..like Molly………there’s a willingness to learn both from officials and from the citizens. The hardest thing to overcome is the stigma…….the barriers…….accessibility is hard to overcome in a community

Molly said if we work with and not for people with dementia the response is better and speedier because it’s a joint  project.

Another problem is that those diagnosed havn’t been told enough about dementia and some don’t understand they are capable of being involved because the cultural stigma tells them they’re not.

They need to internalise what they’re preaching to the community back in the organisation – as it gives  more creditbility. Practice what they preach…

But, as with anywhere, there’s still a lot to be done……

It was interesting to hear their challenges, they’re no different from ours. It’s not normal for people with dementia to speak out in Italy and that seems to be the big difference but even in the UK some believe there’s so few people with dementia willing to speak. Me thinks they might not be looking hard enough….

The Waldensians have always spoken out about discrimination so it’s not surprising that they’re the ones leading the movement.

The Psychologist said Our society is very competitive, we put down the weakest. We survive instead of live. The biggest thing to change is the culture.

The journalist said it’s difficult to report about a ‘process’ as newsdesks are looking for news. On the radio they can pick different moments in the process. They want to talk about the everyday life of people. The key word he picked out is ‘with’ – the concept of working with people with dementia.

Another person spoke of listening to peoples stories, and constantly hearing the word ‘shame’ …….(me thinks the biggest problem lies with the cultural view of dementia and maybe they should start with families – a town can be mega dementia friendly but if the family won’t allow the person to mix with the community, they won’t benefit)

Next up was a role play of how they can communicate on the radio what we’ve been talking about. We spoke about who should be interviewed – we obviously said the person with dementia. Philly said to think about how the person with dementia and supporter may not feel comfortable talking in each other’s presence………

I said Stories can help overcome stigma as people can relate to stories.

We were leaving at their break time so the vice mayor came up with the idea of the person with dementia being at the centre of the interview, and then everyone else playing a doctor, a shop keeper, a family member…..etc….they asked me what I would like to say as the opening statement and I said…….

“I am a human being. A diagnosis of dementia doesn’t mean the end but a beginning of a different life. I need all of you to help me live my life to the full”

So while they recorded their interviews, using my quote as a starting point, we headed off into Pinerolo as we wanted to soak up the atmosphere of an Italian town. We said we’d order a taxi but again, the hotel put themselves out and got someone to drive us there and also said to ring when we were ready to come back …the small acts of kindness mean so much…

We arrived to find market day in full flow and mingled with the locals,adored the fruit and veg stalls and googled many cheeses…….Sarah and Philly bought bought things as well as a pressie for Molly from all of us…….

We followed Mollys map, Philly and Sarah getting a gelato on the way…many shops appeared closed and we realised it was probably siesta time🙄….we hardly saw anyone 😂…..we passed the Cathedral

And beautiful streets full of special architecture…

And climbed the steep hill to the beautiful church of San Maurizio…..

….and a couple, having just got married had driven there for photos…..so we took a selfie and captured their moment with them in the background, before heading back down, stopping on the way for a cuppa and something to eat…

We rang the hotel and their car picked us up at the agreed place and we arrived back for a rest but then met Molly at 4 as she’d asked if if we’d like to walk round the grounds of an amazing castle nearby. She knew the Countess who owned it and continually works with them on an inter generational project. They allowed us to enter for free and gave us a map of the grounds. It was then that more WOW!’s appeared round each corner. It was like an arbutorium  ……and the autumn colours couldn’t be captured on my camera but it was simply stunning

The Countess and her daughter greeted us inside the café while Philly was outside with her sketch pad …..I so wish I could draw……❤️, especially with images like this in front of me….

The walk back in the rain, which had only just decided to put in an appearance didn’t dampen the joy of what we’d just experienced…..

Our final evening and the journey home tomorrow……

 

Day 2 in Italy…….

Apologies for the very long blog, but sooooo much to tell on day 2 last Friday…….

 After an exhausting day but amazing day 1, day 2 started off slightly later with breckie at 07,45. The conference was due to start at 9 but we had the bonus of our rooms being right next to the conference area via a sneaky corridor…….

I’ve found the most exhausting part of all this is the concentration needed between translation and speaking. The 2 languages floating about the air at the same time scrambling my brain if I don’t concentrate really hard. So banging heads have been a constant feature so far….

But unlike the previous nights event, where I was being interviewed by an Italian, today it would be Philly and Sarah, so one less thing to worry about. We’d be having head phones on for the interpreter to tell us what’s happening when others are speaking but at least we would understand each other on stage.

We arrived to Italian chaos….no one seemed to be panicking expect us though😂……

It took 3 introductory speakers before we got the headphones right and could actually hear what our interpreter was saying……..🙄…..but then we finally got there and we settled down…….

The first people were saying how people with dementia were often forgotten and needed more support in the community. There were many dignitaries speaking for a couple of minutes each first….a tad as though trying to make sure they don’t miss out anyone and me thinks very political………

So to the first real speaker –  a Dementia Council Social Worker talking about the experience of creating a better place to live in Pinerolo for those with dementia.

I felt we were missing so much as the interpreter only told us the bare facts of what was being said…..maybe that’s how it is but I wanted to know more……so we asked Molly to go have a word…….and it became better…..but we knew it was soooo difficult for her as Italians speak soooo fast!

The social worker was saying – By everyone working together we can help slow down the progress of dementia…..she spoke of the starting point , nurses social social workers, doctors starting to form group to find how how to manage people with dementia….. (note all medics). They then started to put these projects into practice, meeting together as professionals. GPs are the point of reference for the families.

They started in 2017 to create ‘Dementia Friendly’ communities.

She stressed the talent rather than the dementia ❤️… so they started a project where people could explore their hobbies and special talents of those  with memory problems…

Marcello then spoke about ‘experts’ but actually people themselves living with dementia….not medics….⭐️

The next up was a psychologist…….in the last 20 years there’s been a big change in the numbers living with dementia…..(me thinks it’s just spoken and diagnosed more) He said how this illness goes on for years and affects the whole family

The Italians speak so fast that the interpreter was having trouble keeping up……😳 must be difficult but it was a shame as I would have liked to learn more……but certainly not her fault

People were laughing at certain points and it was such a shame we couldn’t join in the joke…..😔……..

Many families go into denial that there’s a problem……many do nothing but doing nothing is not good, he emphasised the need to act straight away and do something about it as there’s still so much to be done…. – (nice to hear) ‘don’t hide away in your houses, as you can still do such a lot’

They’re trying to avoid people with dementia going into hospital because that’s a trauma itself – (same here….🙄) As usual the problem is finance and lack of money………

3 million families in Italy live with dementia……

A local councillor from Pinerolo was up next………the whole community has to work with people with dementia, not just medics……….she spoke of the event last night with so many locals attending, showing how people are willing to be included….and want to help……but there are social issues and everyone needs to be able to be included. No one must be excluded to make a community an easier place to live, young and old and everyone in between….

The interpreter couldn’t keep up so the perfect time to take a selfie with the audience and Molly waving behind us…😂🤣

For people affected by dementia the days can be long” and then she opened it up to the audience asking what could be done to help…..one person spoke of her mother and said how any form of activity was better than medication…….and the caregivers need more support to have a break.- – a desperate plea for help….and Marcello told her to contact him…..a nurse spoke from a different region about how people are diagnosed and then she doesn’t know what to do next….. (me thinks the post code lottery exists the world over), In this area where we were speaking they said it was good but in others, they aren’t quite as advanced….(me wonders what the people living with dementia would say here, would they think it was good or is that the professional image 🤔)

The Valdasian church was up next. She spoke of the project around Quality of Life in retirement homes. They spoke of the important principles of Respect for the Rights of the person……..the one slide they showed with English was difficult to read because of the weird colours they’d chosen…..🙈

They ended before break with a video showing different relationships between people…..

It started with some familiar words on screen….”Nothing about us without us”

Us next……

Eloisa was interpreting for the audience…..and introduced us ……

You’re changing the world” Eloisa said of Innovation in Dementia ⭐️⭐️⭐️

Philly asked me how I’d felt at point of diagnosis….and I spoke of the importance of language and how Healthcare professionals should never underestimate the psychological effect of words and body language.

Sarah was asked how I’d changed…..and she eloquently spoke of the role reversal and change in personality…….

After each question and answer Eloisa translated for the audience.

We spoke about living alone, being part of the dementia family, how my daughters have enabled me rather than disabled me, how I ‘look as though I don’t have dementia’ and Sarah gave a brilliant answer……., are services in Britain any better than in Italy……..(nope, we have pockets of good and bad just like in Italy) my final thought for someone newly diagnosed

Don’t think it’s the end,,,it’s the start of a different life of adapting still filled with laughter and adventures………”

and for their supporter…

Please don’t dwell on what you may have lost…..a moment dwelling on the losses is a moment lost from enjoying the magic moments that can still exists”

I ventured into new territory by ending with:

Grazie mille per l’ascolto”

Their applause was so kind, Eloisa did a wonderful job at interpreting for the audience….and she asked Marcello to ask them all to stand and wave instead of clap, due to my hyperacusis. ❤️❤️❤️❤️❤️❤️❤️….how kind, how thoughtful, how simple….

While the last speaker was in full flow I typed ……it was the man we were with last night, so I’d already heard his story about Robin Williams and my brain just wanted to sit in it’s own world

It seemed to be the norm for people to chat during people speaking as there was a constant buzz around me….just seems rude to me but normal for Italy….

……then it was time for lunch……

They’d set us up in our own private dining area in the breakfast room so we could have some peace as there were lots of people . Our adorable waiter for our stay appeared out of nowhere and answered all our requests with humour and kindness…..

After lunch, we walked back in and someone wanted to give me a present of a drawing she’d done of me while listening……how amazing ❤️

Marcello started off after lunch by thanking the hotel for the huge welcome they’d given the 3 of us and had made our stay amazing, by going the extra mile and wanting to learn……the 3 of us whooped with joy and clapped them very loudly as they’ve made our stay very special……..

Molly was then first talking about the role of Nursing Homes in creating dementia friendly communities, like Mollys and Marcello’s that we had lunch in yesterday….she spoke of the barriers, the stigma that exist within the community….

The problem is not the dementia, but the way people around you behave”

Small things in the community make life easier for people….like putting a bench halfway up a hill……we need to be given opportunities not barriers put in our way……

They involve people with dementia in their nursing home in decisions.

Everyone has a right to be involved in their community…”

She spoke of the importance of involvement and how it makes people with dementia feel. The most important resource they have are the people who live in the home…Pet therapy is frowned upon in some areas as pets aren’t allowed in the home, so Molly is trying to change this……People with dementia have to be the ones who make the decisions….

Molly could now breathe again, after doing a wonderful job…

Before Philly was a man talking about technology from one of the Universities …..technology has to be able to be understood by people with dementia…

People get frightened by using technology – the same the world over. He showed technology for daily life and spoke of me and Sarah talking to each other then finding solutions, like tracking each other. It’s important for everyone to ‘agree’ to use technology..(me thinks that if people understand the reason ‘why’, they’d be more willing to give it a try)

Many healthcare professionals don’t know much about using technology so they need more education of the possibilities…and those who work in the care sector need more knowledge and help in understanding the possibilities of technology…he also made the important point that people with dementia are rarely asked what they design a product – YES!!

I needed to switch off my brain to save enough battery for Philly……

So to Philly……think my brain was about 15% so just enough power to support Philly

 

She was talking about challenging the tragedy narrative that comes with dementia…… how we need different conversations……on Rights, Accesibility, Voice, belonging, recovery and discovery……..

Philly explained that Innovations don’t provide services but give people with dementia a voice….and are a small perfectly formed organisation where they work from their spare rooms…(me thinks they show how big isn’t always beautiful and that passion, understanding and big ideas don’t need large offices etc)

Once again, Eloisa translated for the audience…..

We need to make Rights real……and enable people with dementia to understand their rights and know what to do when their Rights are denied. We have lots of local projects related to Rights and Philly quoted the Scarborough group whi had had a hand in people with dementia having access to the Blue Badge for parking.

It’s often the environment and other people who deny us our Rights – e.g poor signage, poor lighting etc, so we’ve produced guidelines/checklists with people with dementia around environments and lots of other situations, all available for free on:

https://www.dementiavoices.org.uk/

She spoke of everyone with dementia having a voice and how DEEP group have multiplied hugely, now being around 120…..all people living with dementia meeting together, just like me and my playmates at Minds and Voices…….then a brief description of Dementia Diaries and the value this has in enabling more people to have a voice.

Everyone of the projects mentioned are difficult but they are deliverable anywhere in the world.

We can build a better world by where the narrative of tragedy is replaced by the narrative of hope”

a wonderful way to end the conference…..……..❤️

 

 

Day 1 in Italy……..

So yesterday was my first day waking in Italy….head banging from a sleepless night didn’t help….but am sure the day would get better. A gorgeous hotel, but no kettle in the room so no morning cuppa 😳…a weird feeling of confusion inside – confusion of time, of whereabouts, of missing routine….made a right mess in the shower as it’s all white, everything, even the radiators, so didn’t see I needed to pull the shower curtain round, thought it was simply a walk in…..🙈…hey ho……sometimes when things are wrong, the smiley faces and helpfulness of the staff can overcome even the most challenging moments and the staff here really are wonderful…

Molly was coming to take us for a drive into the mountains first thing – very exciting – so breakfast was at 7….more lovely friendly staff…..a myriad of strange morning treats to survey….good job tea isn’t as important these days as coffee is the order of the day in Italy, much to Sarahs delight, but boiling water for tea seems to be mystery to them……but as I say, good job tea isn’t an important ingredient anymore……But it was still the missing ingredient and meant I didn’t drink as much during the day…

The time flew over breakfast, with happy chats and observations….and in the blink of an eye it was time to meet Molly….and there she was waiting! We praised the staff and the talk Molly had given to them all….and apparenty the manager held a briefing with all staff stressing the importance of helping us……wonderful job that they listened and lots of good advice we can give them …….

We trundled along the windy roads with amazing views of sunlight on snow capped mountains – caught in a glimpse and missed by my camera……as we trundled Molly told us about the local community and the work she does with children from different communities within a stones throw of one another but with very different lifestyles…..children with gardens and central heating in one part and a few kilometres away, children who work and spend their summer chopping wood for the house fire in the winter……

Along the journey I’m trying to type, look and talk and look type and talk…..and say WOW! at every turn of a sharp corner

There are lots of older people who live alone high up in the mountains who come down to live in a centre in the winter and can bring their animals down with them ❤️

When we got to the top of the range we were in paradise…..

We stood in the silence….and were just in awe of the beauty around us……..a local adorable dog befriended us and walked all the way with us…..and then sat with us as we reached the other side…..

We trundle round the loop back to the beginning, giving Philly a chance to run up and down and then Molly rang her friend to see if her café person was open and it was……

We had a cuppa and a piece of home made cake before going outide to look at the tree house….once again stunning views

……before heading back down the valley…..with the little dog running behind the car…..he’d obviously had too much fun with us……❤️

We drove back down the valley with the views in reverse, Sarah taking piccies from one side and me the other…

…..and stopped off for lunch at the Refuge, which is their Care Home for people with dementia and other conditions……

it was much better than I thought, but so homely – no manicured lawns, no poshness, higglepggldy selection of chairs and a lovely garden to sit in………..very different from anything I’ve seen in this country.

We had lunch with 2 lovely ladies from the day centre, Gabriela and Albina….who were also going fishing …..

Molly spends lots of her time with people with dementia saying what they want to do and then finding businesses  for them to visit and assess them while doing that activity……

One such case was this afternoon and after lunch Philly and Sarah were going to join some of the residents fishing, Philly to use her sketch pad and Sarah to watch, but I opted out as my head was banging for some reason and I just needed to lie down and have a rest before the event this evening where I’d be in conversation with Neurologist Dr Ferndinando Schiavo……

Molly came to pick us up to take us into Polperino. We arrived to find lots of people arriving and taking their seats. The room was so beautiful .They had to get more seats as more arrived. I was introduced to my interpreter, who amazingly was my Twitter pal Eloisa!!!! So there were many hugs….The audience were made up of the general public and by the number attending, they must have publicised well.

After the dignitaries had said their bit we began. Marcello began with the words

The fight against dementia starts with words” and then I was introduced…

Obviously I wasn’t typing, I was just reading the questions we’d agreed on from my iPad,  but it seemed to go down very well

People were kind in their applause and some came up afterwards simply to say thank you. Italians aren’t used to hearing people with dementia speak in public, so it will hopefully have opened peoples minds….

Another wonderful day in this beautiful country……tomorrow is conference day….