Charlie’s poem

Did we forget or did we remember

The pal close friend of mine

or did it slip my mind

 

We do it all the time and yet

We could be that person

Yes we forget

 

We are all a set of going to do

Tomorrow or the next day

but we never seem to get there

“Well they will understand we will say”

We are all bustling along in our own way

 

Without the thought of others

who only need a phone call

or just that visit today

 

So don’t put off till tomorrow

what you know you can do today

get it done do it now

for remember you may be that person

who needs someone to need

that call today.

 

 

In memory of Charlie who wrote this poem before his own diagnosis of dementia.  Charlie died Christmas 2016.  His poem has been shared by his wife with permission for this exhibition – ‘Charlie was an avid poetry writer in his day’.

SYDCAE 2017 Day 4 Report: “We must hear the voices”. “That was a wasted hour that was”

They should teach dementia in schools”, Mrs L told me on Wednesday. I share this in today’s SYDCAE 2017 report because it’s a question that I told her that we shall look into together but I realise I’m unlikely to get round to for a week or two. What is the state of play about that? Does anyone reading this know whether or not dementia is a fixed part of the national curriculum? Mrs L was on a rare sortie into town while her husband remained at home with a paid carer. She spoke like the clock was ticking and revealed a little of the isolation she feels caring for her husband at home, that only a residual number of friends still felt able to maintain contact. Mrs L has an idea though, and now it’s been shared a bit more widely.

Diane Hinchliffe with Helen Smith led a wonderfully enriching and poignant ‘Moments in time’ poetry reading this afternoon. Both Diane and Helen have been active for some years with care home residents in Barnsley, promoting poetry. It was fantastic to see so many people attend to listen or to read their poems. Anne Ashmore made a surprise appearance, opting for the quicker (but more expensive) taxi to work today so that she could read one of her poems at the event. Other readers included Linda Burgess, Anne Swinhoe, Cynthia, Karen Vaile, Kenneth Kirk and Claire Jepson. Towards the end, Linda seemed to capture the mood of the event when she declared that “we must hear the voices”. New friendships were made and new commitments to action were agreed by some afterwards.

It would be unfair then not to add an observation I made during the course of the event of one disgruntled woman in the back row grumbling “that was a wasted hour that was”. It turned out she couldn’t hear everything – another learning point for next year. Thank you for all of the brilliant poetry and bravery of those voicing their feelings and experiences and memories in Sheffield Cathedral today. We have audio-recorded the event and aim to share this when one of us on the organising committee has watched the (hopefully) inevitable YouTube video on how to upload audio to websites!

It was a busy day for Diane, hotfooting it across town after appearing on Paulette Edwards’ BBC Radio Sheffield show. Many thanks to BBC Radio Sheffield for all their interest in SYDCAE 2017 this week.

During ‘Moments in Time’, Richard Bentley’s daughter-in-law could just be heard whispering into a mobile phone to someone who was trying to guide her to the part of the exhibition where his work was on display. “Dementia in Pakistan?”, she quizzed down her mobile. Turns out she had been instructed, correctly, that it was displayed above Saima Eman’s deeply personal posters about her mother’s experience of dementia. Mr Bentley’s daughter-in-law was delighted to see what had made such an impact yesterday.

I’m not quite sure how many people attended from South Yorkshire Housing Association but it suddenly seemed warmer in the Cathedral when they all arrived. From Twiddle Mats to beautiful felt designs, customers and staff from SYHA had done themselves proud. We all posed happily for a number of photos as a group, stifling giggles as an unnamed group member whispered “sexy smiles!”

Come to Dementia Futures tomorrow, Friday 30th June: 10am-1pm. University of Sheffield PhD students present their cutting-edge dementia research in plain English. Everyone welcome!

SYDCAE 2017 Day 3 Report: Richard Bentley steals the show

The School of Nursing and Midwifery at the University of Sheffield have supported the SYDCAE for 9 years now but it was serendipity that brought two nurses to Sheffield Cathedral today. The younger of the two women asked me what the exhibition had to do with nursing, and I felt this was and is a good question. The SYDCAE relies upon the relationships that are fostered between all those who make and contribute artwork – it is a team effort but everyone involved is vital. And nursing at its best is all about positive relationships, based on trust, care, respect and dignity. The two women explained that they had been drawn to look at the exhibition because of the School of Nursing and Midwifery banner on display and because, as it transpired, they were former nurse mentor and mentee – all grown up now, but still firm friends after 30 years and meeting for a coffee.

There were many interesting conversations and positive experiences today. For example, three generations of one family stopped by to look at the lovely work submitted by Rosebank Care home. In conversation, one of Connie’s daughters explained that their mother had helped to make the work alongside other residents, relatives, visitors, and visiting workers – while I had been told previously that Mick also deserved credit for being so patient in putting it together. Connie’s husband shook my hand as he left while the youngest member of the group rewarded me with a high-five.

It was especially pleasing to spend time with Richard Bentley and Bernard Pease – along with members of the team from Woodland View and Sheffield Health and Social Care NHS Foundation Trust. Hannah Godfrey, whose work also appears at SYDCAE, introduced me to these two gentlemen. I was able to show Richard where his painting was displayed and his reaction to seeing it in the Cathedral setting was very moving. Richard, by his own admission, does not consider himself to be an artist. Yet his work is, in my view, as thought-provoking and fitting as any other piece on display. When Richard also realised that his work features in the exhibition brochure he was rightly proud of his achievements, though incredibly humble about it all. He told all of us that he was going to do more and Richard, if you are reading this, I do hope you submit artwork to our 2018 exhibition. Bernard Pease was also pleased to see his work in the exhibition. In our conversation, which was quite wide-ranging, he also appraised me of nature of the Napoleonic era changes made to the fortifications of Cité de Carcassonne in Languedoc, South West France. He was only an amateur historian, he noted. Many thanks, Bernard.

copyright-french-moments-carcassonne-7

Zoe Brodie, from Alexander Court Care Home, emailed me her reflections on taking part on the exhibition, after I suggested she do this after we spoke on Tuesday. I’ve pasted this below because often alongside nurses and families are other care practitioners who together, as a team, look to offer the best support and care to people affected by dementia. They seem like suitable words to end on:

Alexander Court Care Home is not a dementia home but our residents often develop memory problems (dementia). I am an activities coordinator and try to make friendships with our residents and get to know them for who they are, not for their disability or illnesses. I spend a lot of time just talking and listening and some residents don’t remember my name despite me reminding them, they just know me as the lady in the orange t-shirt (my uniform) who makes them do activities😊

We started the art project and I got a great response. I talked to relatives of the residents who wanted to be part of it and explained to them that I intended to gather old photographs of the resident’s younger days. I found it very emotional talking to the family members, they talked about times in their life with such happiness and told me of their loved one’s great achievements, at times I had to remind myself that this is someone’s life, not a story from a book or just a general chit chat, I am listening to someone’s life.

I felt like it was a great honour that they wanted to share with me and others these stories. Listening to personal accounts of people who once lived life, like me, but who are now suffering cruel illnesses and as one lady said to me – they are left with only memories to live off. Admittedly, I felt quite selfish thinking; what will happen to me when I am older?

Betty and Pearl are two of our residents who were able to visit the exhibition, again I found it so emotional during the visit to the Cathedral, the look on their faces when they saw our work on display and remembering the work we had put in to create it, it was such a great achievement for them. In that moment, the perseverance, patience, time, care and understanding I had put in was all so worthwhile

Come and join us tomorrow for: ‘Moments in Time’, 2.30-4pm, Sheffield Anglican Cathedral

SYDCAE 2017: Day 2 Report ‘The women’s land army to Balmoral again’

Today was another memorable one at the SYDCAE 2017. Fully set up inside the Cathedral we welcomed a good number of visitors to the exhibition. If you have never been to Sheffield Cathedral then you should make an effort and step inside. It is beautiful, bright and so very welcoming.

We had visits today from artists and residents of Balmoral Care Home in Woodhouse. It was particularly good to meet up with activities guru Lorraine who has, I believe, attended all 9 exhibitions. She and colleagues and residents have created a brilliant golden book of quotes and pictures, put together over numerous conversations and discussions. An added bonus was shaking hands with resident, Michael, once more – he’s been to nearly as many events as Lorraine. Finally, a real pleasure too to spend time speaking with Anne Ashmore, poet and domestic (in that order), who explained just why she feels so at home in her job. Thanks to all of you for coming.

There was also a visit from staff and residents of Scarsdale Grange, Sheffield. Konrad Zastawny was there – another old friend of SYDCAE and with his group was a woman called Audrey. Audrey’s daughter and son-in-law introduced me and showed me the photos and information on a ‘Memory Quilt’ about Audrey and her time in the Women’s Land Army at the end of the war. Audrey was proudly wearing her Land Army medal and chuckled in agreement with her daughter’s account of how much fun her then 17 year old mum-to-be had with her friends back then. They had kept in touch over the years, too. Thanks, Audrey, for what you taught us all today – and for what others will learn when they read about your important memories – and our social history – at SYDCAE 2017.

The final highlight to note here was the screening of ‘Gracie’ and of the 4 short films sent in by volunteers, staff and residents at Lower Bowshaw View, Sheffield. Matthew Jacobs Morgan spoke brilliantly about why he had made ‘Gracie’ and prompted everyone to think about how we can ‘design-in’ identity maintenance opportunities for people affected by dementia, for mutual benefit. Then we all admired the provocative and moving films and music sent in by Sue Lane at Lower Bowshaw View. Again, the focus on autobiography showed us where we might find ways to continue to connect as impairments increase and, provocatively, two films pushed a self-advocacy message, leaving the audience with to consider the assertion: “WE ARE HERE NOW LISTEN”

Final thanks to the actors from the Ramps on the Moon theatre company who came over to support Matthew and @SYDCAE before performing in Tommy at the Crucible this evening. We learned that we need to sign all films we show in future – got it!

 

SYDCAE 2017 Day 1 Report: Monday 26th June ‘Making an exhibition…’

It was quite an unexpected way to start the exhibition, al fresco, at Sheffield Cathedral. But by the end of the day all of us involved in setting up the exhibition realised it had been something of a blessing. An electrical problem meant that we were unable to enter the building until after lunch but rather than wait around grumbling about it, Kathryn, Maria and Jasmine – with help from Emma Gittins and colleagues at the Cathedral – brought the exhibition outside into the sunshine of central Sheffield.

It was hard work but the impromptu pop-up SYDCAE looked great by the time BBC Radio Sheffield’s Rony Robinson and Jamie Coulson from BBC Look North arrived to conduct interviews with artists and members of the public. During the morning there was a steady stream of people walking over to start conversations about the artwork on display, to share their own experiences or find out what was going on. Against the Cathedral’s stone facade the colour of the creative art caught the eye.

Later on we moved the artwork inside and spent some time deciding the best positions for different pieces. We have had many contributions this year and it has been a real challenge to find ways of displaying them properly. We have done our best. Messages came through that Matthew Jacobs Morgan and Tracy Rimmington from Westfield School had both conducted interviews with Rony – speaking respectively about the film ‘Gracie’ and pupils’ creative responses to classroom explorations of the notion of memory loss.

Albert Attom popped by in the afternoon, escaping his PhD for an hour or so, to lend a hand. It was good to see him.

The only downside of today’s difficult start was the need to postpone the Dementia Futures event. This was because at 10 o’clock in the morning we had no guarantees that we would be able to host the event when it was due to start at 1pm. Many thanks to the PhD students involved for their understanding and flexibility and apologies to those people who arrived expecting the event to proceed.

We are pleased to confirm that Dementia Futures is rescheduled for 10am Friday 30th June, Sheffield Cathedral. Please do come and support these University of Sheffield students and learn about their cutting edge research studies.

Tomorrow: 1pm, ‘Screening of ‘Gracie’ with Director and Actor Matthew Jacobs Morgan and screening of original short films by residents, staff and volunteers at Lower Bowshaw View, Sheffield.

 

Power cut at Cathedral 26th June

There has been a power cut at Sheffield Cathedral this morning, Monday 26th June. There may be a delay in opening the exhibition while this is resolved.

Saima Eman at SYDCAE2017

“My research is remotely related to dementia. My doctoral research is basically on personality and ASBs, so I often come across aggression in dementia. I have done a course on Dementia Prevention online from University of Tasmania. I also led two awareness and support groups on dementia. I have joined Alzheimer’s and dementia support groups on Facebook and created my own page as well.

 

I have direct experience related to dementia patient because my mom is suffering from Lewy body dementia. It is a terrible disease and I went through almost all the stages with her. These days she is extremely vulnerable at age 85 years..I just use diary method to record my mom’s behaviours and I can offer advice about support, website links for dementia support, etc. I am in Lahore, Pakistan.”

 


PhD Commonwealth Scholar
Psychology Department
University of Sheffield
UK

Email: saima.eman@sheffield.ac.uk

‘Dementia Clock’ by Siana Glen and G1 service users, Sheffield

Dementia Clock

“As the hands around the clock move, they land on quotes from people with dementia about meaningful periods in their life, and therefore their concept of time as opposed to our own. Often people with dementia become ‘stuck’ in different periods of their life and, to reduce stigmatisation, I hope the piece will challenge viewers concepts around the symptoms of memory loss experienced by people with dementia and re-consider preserving their personhood through acceptance of who they are in their moment.”

On display at SYDCAE 2017, Sheffield Cathedral, June 26 – July 2

Siana Glen, OT Student, Sheffield Hallam University

Contact: Siana.Glen@student.shu.ac.uk

Dementia Futures 2017: Conference programme available

 

 

Please click on the link below for your Dementia Futures 2017 programme, including details of the University of Sheffield PhD student speakers and their presentations.

The Dementia Futures conference takes place at Sheffield Cathedral 1300-1600 on Monday 26th June.

No booking required. Open to the public. Please come along and listen to and ask questions about some cutting-edge dementia research.

2017 Dementia Futures Conference Pack FINAL PDF

Part of SYDCAE 2017

Artwork @SYDCAE2017 from The Sheffield 50-64 project

Bad Hair Day (landscape) by Marilyn, Sheffield 50-64 Project and Art House Group member

“Sometimes every day feels like a bad hair day, this is my autumn landscape my favourite season”

More examples of work by members of the Sheffield 50-64 project is on display at SYDCAE 2017 at Sheffield Cathedral, June 26 – July 2

The 50-64 project + Art House Art Club
The Sheffield 50-64 project meets on Fridays at the Art House in Sheffield to create things, talk, eat cake and relax.

The group has been meeting for 5 months now, and is made up of an eclectic mix of personalities and artistic talent. We were originally brought together by the situation we’ve found ourselves in – affected by young-onset dementia – but now we come together because we’re friends and it feels good to make stuff every week.

The group is supported until September by the Alzheimer’s Society and Age Better Sheffield. We have a coordinator – Anna Parker who you can contact on anna.parker@alzheimers.org.uk with questions.

We hope you enjoy our work.

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