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……

 

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

7 thoughts on “Day 3 in Italy …….

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