Category Archives: Education

Another wonderful Workshop……

Yesterday was the day me and Cathryn Hart had the opportunity to deliver another workshop as part of the Humber Recovery College programme. This time it was held at the Central Library in Hull.

The weather has turned cold so was grateful for Cathryn’s nice warm car when she picked me up from home…….

Cathryn and her Research team at Humber NHS Trust do a wonderful job and between us we make up the A Team😂

We arrived at Hull Central Library with a queue waiting for it to open! The lovely Acho, from the recovery college, and who helps us on the day, was also waiting in the queue. It was freeeezing…….but I had my faithful hottie teabag in my pocket so my hands didn’t get cold…..these amazing little chappies stay hot for 10 hours so I always have one in my pocket when travelling as I hate my hands being cold…..

Anyway the doors opened and everyone piled into the warm……..We went upstairs to the room and Acho had already said that we were overbooked😳. The library person came and said they’d increased the chairs to fit as many people as possible in the room😳……….not ideal but didn’t want anyone turned away.

People started to arrive and before long more people arrived who hadn’t registered! Luckily there’s always people who can’t make it on the day and luckily 2 people didn’t turn up so we were able to squeeze in the extras.

After cuppa teas were in situe, we went round and people simply said their name and their connection with dementia. It turned out we had a fabulous mix with student social workers, care home staff, organisations in and around Hull and wonderful people affected by dementia. Someone had even travelled all the way from Scarborough…….There was the lovely Bob there with his wife, who’d been to one workshop before; a lovely lady with dementia who reads my blog; a new recruit to the Alzheimers society research network, who I know as ‘Polly put the kettle on’ from my blog and now I’ve got that name in my head, I can’t think of her real name 🙈 – sorry! – along with her friend  Mark…….

So lots of hugs and hellos later and we started……….

At this point I wasn’t typing but I imagine Cathryn spoke of the research being done in the Trust and how people can get involved before handing over to me to talk about this that and everything. We like to keep it totally informal so the audience can dictate what we talk about and Cathryn feeds me reminders to put sentences in my head. This allows us to go off piste and not worry about it…..

The 2 hours flew by. We left 30 mins at the end for questions and had some really good ones. From family members being in denial and how to deal with it, to colour contrast in the home, how to deal with anxiety, guilt and many many  more. One I particularly loved was about a dad who didn’t recognise a photo of his son as an adult, which upsets his wife, so I said, try putting one next to it of the son as a child and see if it sparks recognition………

We laughed, there were a few tears and we shared ideas…….what a wonderful workshop with an amazing group of wonderful people……AND they agreed to a piccie at the end….we’ll be doing more workshops once the new programme comes out, I’m sure.

After lots of hugs and thank you’s we then all trooped out into the cold back into our own worlds. I said to Cathryn that I’d take the bus home so she wouldn’t have to take me home before going back to work…..I then promptly got distracted and missed my bus by a minute…..Billy wasn’t happy that I was late back for his lunchtime snack….but it was a nice walk getting to him

Exhausting day but sooooo worth it…..

Dementia Diaries recordings……..

For those who havn’t found or heard of Dementia Diaries. It’s a web site where people with dementia, including me and all my playmates,  record our opinions or feelings about anything and everything.

Rachel and Philly often give us a topic to speak about and apparently they asked for our views on what the right housing means to us……I say ‘apparently’ because Rachel tweeted a recording of me doing just that, but I remember nothing about recording it!😳

But I know it’s me, it’s my voice. So here it is if you’d like to listen to my way of remaining in my own home, which I call my ‘haven’ and the adaptions I’ve made.

https://dementiadiaries.org/entry/10135/what-does-the-right-housing-mean-to-me

We’re always looking for people to transcribe our ramblings. They’re only short and there are detailed instructions on the web site. Lovely people from all over the world have transcribed for us but we’re always looking for more. If you’re interested just click on ‘How can I volunteer to transcribe diaries’ on the black strip at the top of the page.

You can also hear lots more of my playmates……..lots more of our thoughts and feelings. It’s a great resource for anyone affected by dementia and a learning tool for professionals……

FREE workshop about Dementia…..

It’s not often that workshops run for professionals or anyone affected by dementia are free…..but me and Cathryn Hart from Humber NHS Trust have been running these twice a year for a couple of years now (I think!🙄)

Our next one is on Thursday 17th January at the Central Library in Hull, Meeting Room 1, 10am – 12.

All are welcome, including Healthcare Professional and any affected by dementia but also anyone just curious to know more.

The last sessions have been attended by a host of people including nurses, social workers, care home staff as well as families affected by dementia, so always a lovely mix. The people who attend always go away havn’t learnt something new.

The session lasts 2 hours and although we do have a proper plan and cover certain things, we tend to go with the flow according to the conversations that invariably happen and questions that come our way.

“ Discussions will be encouraged to share good ideas for living as well as possible with dementia, which means everyone can take away ideas to share both professionally and personally to help them day to day….”

It’s very informal and, needless to say, we have tea and coffee on tap. So for anyone interested, you can  register at the detail below. Cathryn tells me we’re almost full but please try and register if you’re able. It would be lovely to see you there.

To book a place please contact the Humber Recovery College:

Tel Number – 01482 389124
Email: hnf-tr.humberrecoverycollege.nhs.uk
Web: https://www.humberrecoverycollege.nhs.uk/

A Lovely Interview on Canada Radio……

I was convinced I still had to record this interview. I was even about to ask when it was going to happen. But then, all of  a sudden it appeared on Twitter……..

I’ve listened to it amazed at the lovely conversation I had with the presenter, Piya. She was so kind.

It was also interesting to hear the sentences and words I used. People listening to it might think me eloquent and fully coherent, but I know I’ve said those sentences and words a thousand times. They appear to be stored, waiting to be released when the interviewer feeds me key swords, as Piya did so beautifully.

At one point I say, “The one person that never let’s me down is me”……I’m very lucky and have been for many years, that I’m happy in myself and it’s been a godsend with dementia.

The programme isn’t just about dementia, it’s about memory in general and how much we can rely on it. A fascinating programme.

Anyway, hopefully this link will work for you from CBC radio. Not sure how long its available. The programme was called Out in the Open. If you scroll under the first picture, it says, ‘Listen to the full episode’ and I’m on at the beginning. And Piya gives a lovely comment right at the end, bringing the listener up to date with the blog I wrote about the interview afterwards.

https://www.cbc.ca/radio/outintheopen/if-memory-serves-1.4945241

or you can just listen to my bit with this link…

https://www.cbc.ca/radio/outintheopen/if-memory-serves-1.4945241/it-s-the-dementia-it-s-not-me-how-this-woman-finds-resilience-in-the-face-of-memory-loss-1.4965179

First NHS Induction session of the year……..

I was sad to find an empty calendar awaiting me for this week when suddenly Sarah Trufhitt, Research Assistant at Humber NHS Foundation Trust emailed me asking if I was free to help her deliver the first Induction session for new NHS staff at the Trust.

Well it was yesterday. It was really weird getting up and having to go somewhere again – the first for a few weeks. Weird but wonderful. It was what I’d been looking forward to and what my brain needed, but still, it didn’t stop it feeling strange.

Anyway, Sarah agreed to pick me up from home and was duly there at the agreed time. She often comes to my village to drop off her cute dog. She found a wonderful ‘befriending’ system, whereby people who don’t have a dog,  because of work commitments etc, look after someone else’s. No cost involved. A couple in my village look after her dog each week – what an amazing idea and why didn’t I know about this!!!

Anyway, I digress……but this was our main topic of conversation all the way to Trust Headquarters!

We arrived to find a chocca full car park – obviously everyone was back at work and a whole group of new starters needed spaces.

Sarah made me a cuppa while she got her stuff together and it was lovely to catch up with everyone and of course have a piccie

We trundled over to the brand spanking new lecture theatre to find a room full of new NHS staff. From GP’s, Doctors, social workers, Nurses and Healthcare staff of every description – wonderful🥰

Sarah handed out the paperwork about Join Dementia Research, the Annual Conference, and I explained the free workshop me and Cathryn are running on the 17th Jan in Hull open to anyone and everyone.

Sarah took them through the importance of research in the Trust and the part they can play and ran through some of the current studies before I finished off. Part of my words go like this…….

You may be sat there thinking, well what’s research got to do with me, it’s not part of my job? We have to normalise talking about research and to do this we must have every healthcare professional, no matter what their job, all coming on board and promoting research. To normalise talking about research would normalise involvement. If you don’t think research affects you, you may change your mind if you or someone close to you was given that devastating diagnosis of dementia.”

There were lots of smiley, friendly faces, which bodes well for patients visiting the Trust. The session went well and I noticed many making notes and listening instead of getting distracted – always a good sign.

Saw this nice A-Z poster about Dementia Research in the office too….

It was a good job it was a familiar short session. One where I read the same each time, nothing new, nothing unfamiliar. Just what I needed as a first outing for some weeks. Shame it’s the only thing this week but better than nothing…….

Very Last Trundle of the Year……

Friday saw my last trundle of the year. It was to a place I love going – Bradford University. I love being involved in anything there, as the staff and processes are perfectly set up for people with dementia. It also meant I’d be seeing my lovely friends Sandra and Barbara.

It was a very cold but beautifully sunny start to the day. The calm before the storm if I believe the weather forecasters……

I was meeting my fellow Alzheimer’s Society `Research Network volunteers, Sandra and Barbara for a cuppa and catch up in the lovely café at the Uni first. When I arrived the 2 had become five as Viv and Geoffrey were also there😊 We accosted one of the students to take a piccie by the Christmas tree…..

We arrived upstairs to find Murna and co with a hot meal of curry and rice waiting for us and a lovely festive table even though we were there to work

It was a lovely way too start the afternoon and we were soon joined by the other panel members of Sandra and Sue…..

We had the gorgeous lunch and catch ups with everyone.

Barbara is the chair and thanked everyone for coming as it’s such an important meeting as it’s the end of the three long project. “It’s lovely to make good friends” and over 3 years you inevitably make good friends.

Barbara continued to say, “At the time I didn’t think the way I do now” as in this project there’s been a lot of empowerment going on. Care assistants have been empowered by this project to care better. The staff have been empowered by the project to work better.

We’d been invited for a final time in order to comment on the end of project report and in particularly, the Lay Summary and the part played by our involvement. The primary audience for the report will be academics who are the founders at National Institute for Health Research.

So Murna and Kathryn gave us a recap of the actual project… Many people end up in hospital from Residential Homes unnecessarily – if action had been taken several weeks earlier, they could detect the signs earlier and deal with the problem before there was a need for hospital admission – The study had 3 elements, the Stop and Watch Tool, Care Assistant then alert nurse who investigates, who then communicate the findings to Primary Care.

The bonus for this research is that the elements were being implemented as part of the research. There were 2 Nurse Champions in each home who were supported in implementing the change.

That was the ambition, ……….the reality was the care home found it complex.

The key question to ask was ‘Will they use the intervention and is it feasible to use’?


The whole Team….

The good relationships built with the care homes enabled excellent information to be retrieved by the research teams.

Interesting information was gained around the use of the tool – the Stop and Watch Tool was used in some cases but many enthused that it was now all in their head so no need to use the tool as a recording method.🙈

Manager buy in, as usual had a big impact on whether the Care Home Champions had support to carry out their role. Some may have thought they follow certain protocols already but they had no means of proving it, whereas the research team  were giving them the Stop and Watch tool as a way of evidence of use.

Implementation of any change process takes lots of time and resources.

“A real window into Care Home culture” said Sandra of the report.

For me, the study has empowered care home staff and given them permission to think and to think they can help residents. But without backing from managers it wouldn’t work.

The ENRICH project has encouraged research into Care Homes but the fluidity of staff, owners and care homes makes it a very unstable environment. But many now use being ‘research active’ in their brochures to show they’re taking part in research and demonstrate they’re willing to learn and change.

Some said they loved using stop and watch but when asked, it’s all in their minds. We need the CQC to ask for evidence of prevention of hospital admissions – recorded evidence. For the care assistants and domestics it’s opened up a whole new role for these people who have most face to face.

Care Homes get penalised for sending people to hospital unnecessarily in America. I always get so edgy when ‘penalizing’ is mentioned. I think it’s the culture that needs changing as penalizing often has the opposite impact on what your’e trying to achieve as it hides the problem.

In this country, the hospital makes the savings if residents aren’t hospitalised but it costs the care home more to put in practices to keep people out of the hospital.

Sandra highlighted the fact that the Stop and Watch tool would be so useful for family members…….some staff in care home still held the view that family members have no role to play in early detection, 😳when in fact they can be key as they know the person best and could be the person who spends most personal time with them in some circumstances.
But I highlighted that we mustn’t forget those whose family don’t visit them – who looks out to make sure their care is good care? This simply highlights the complexity of Care Homes and the need to ‘care’ for everyone.

This isn’t a dementia specific study, but for staff to use eyes and ears so any resident should benefit.

So many interesting finding have come out of this project, some not surprising, others quite shocking, so let’s hope they get the funding needed for a bigger trial.

It felt like the end of term as me Sandra and Barbara walked down the hill to the station. It was lovely to have the last event of the year with all such nice people and all was going swimmingly to get home as planned……..until…….I arrived in Hull…….where my last train home was cancelled🙈…….it meant I had to get a taxi from Hull, but at least I had a lovely taxi driver.

As we chattered about this that and everything,  it turned out he knew Pontefract, where I lived most of my childhood and even the roads nearby our house. We shared lots of stories of the coal mine and generally put the world to rights but finally, after a long 30-40 minute journey, I was finally home…..😴

The Start of an Exciting New Project……Part 1

Innovations in Dementia have a major new project starting called Dementia Enquirers and we had our first meet-up yesterday! It’s testing out a whole new approach, where people with dementia will lead & control our own research, on issues important to us. The Big Lottery has funded the project with a grant of over £500,000…

Philly Hare and Rachael Litherland are our partners in crime and keeping us under control……well maybe……..a hard task for anyone to undertake 😂

It was a very wet murky start to my trundle but at least the train was on time. Bizarrely it was also raining inside the train, causing much confusion and shuffling around playing musical chairs……🙄☔️luckily, I was either getting wet and didn’t realise it or I’d chosen a good seat😊

Rachael was meeting me and some other playmates at Kings Cross before we wandered up to Euston to meet some more…….as it turned out, it was just Carol with Rachael first before we trundled up to Euston to meet Agnes and Dory.

Agnes was busy doing selfies when we found her. She’s found an amazing Tree of Thoughts. Euston station was wanting suggestions from people about how they could better help people with invisible disabilities by posting suggestions on a Tree of Thoughts. So a lovely member of staff was roped in to take a piccie of us all


Dory, Carol, me and Agnes….

 

We then climbed in a taxi and made our way through very busy London streets to The Royal Foundation of St Katharine – a lovely peaceful haven in the midst of the city hustle and bustle.

Philly, had arrived early to put up some very useful signage. After settling in my room and a much needed cuppa, I joined the rest of the group downstairs bu following all Phillys ‘Wendy’ signs, for a cuppa before supper. Howard, Mhari and Hugh joined us too and lots of conversation and laughter continued.

After a lovely supper I abandoned the group as my head was banging, as usual, and I retired to the peace and silence of my room. My silent community of Twitter, keeping me company.

The next morning, over breakfast, we put the world to rights and laughed sooo much before heading to the meeting room.

We began the session with Agnes leading a few minutes of relaxation which perfectly set us up for the day.

Rachael went through the detail – The big lottery has funded us for 3.5 years. It’s a new approach to research – led and controlled by people with dementia. It will give the opportunity for 16-20 grants so that DEEP groups can carry out their own research/enquiry

At lunchtime we’ll be joined by Dawn Brooker, Simon Denegri, David Crepaz-Keay and Tom Shakespeare – all professionals in their field.

It’s a very unique and exciting opportunity which is actually creating history in the research world for people living with dementia

We need to show the research world that we too can be professional in the role we’re undertaking. Researchers will come through our door instead of us going entering through theirs.

I asked if ethics would be involved and of course if we want to do valuable reasearch that will be taken seriously then yes they would. But what an opportunity for us to go before ethics committees and show them how we all still have talents and need to have our voice heard.

We need to turn research on its head. The Big Lottery were impressed because they like to fund projects which challenge the status quo. Research priorities will be driven by people with dementia.

We spoke of the words we use so as not to frighten some people. The thought of doing ‘action research’ will mean nothing to many. So having conversations with groups and allowing them to decide the words and type of ‘enquiry’ they want to make might be key.

We then had to randomly think of projects that we think would be useful. Soooooo many went on the flip chart……..we were bursting with ideas……wonderful wonderful ideas. 2 sides of flip chart paper……so we won’t be short on projects……..

Over a cuppa tea we then had to choose and tick our favourite 3………but I couldn’t help ticking 5 as there were soo many good ones….my head was buzzing with ideas and excitement…..

Role of the Research Interest Group was up next……again lots of excitement but also fear of our role. We need to work together to find ways of measuring what has changed because of the project.

It’s our opportunity  to amaze people in what we can do…..

The final job before our visitors arrived was deciding the logo…….we had 10 to choose from and narrowed it down to 2 favourites………😊

So this won’t be an overlong blog I’ll finish off tomorrow and you can read about what the professional visitors thought about our ambitious aims and how they might help us along the way……….

Fingers versus Voice……..

When I type it’s a one way process; thoughts to fingers – often no noise, not having to be questioned and then type an answer…..just my fingers translating my thoughts into words. The words inside my brain making their way deftly to my fingertips and then appearing before me on my ipad.

I could never speak at the speed and articulacy (is that a word? 🤔) of my typed words. My brain and my voice appear to tolerate one another now rather than be amiable companions. My brain and silent thoughts in my head annoyed and frustrated by the inability of my voice to speak their words.

But my fingers and brain are great friends still. It amazes me to see the words flow onto the screen. To still have this skill is not only a comfort but a way of escaping and outwitting dementia. It may think it’s silenced me through my voice but my fingers can still do the talking. Laughing at dementia as they speed along.

I wish I could type an answer to a question, let my fingers do the typing then read out the answer. But the complexity of listening, considering, typing then speaking is beyond me.

Yes I can still talk, I can still hold a polite conversation, give my views, albeit hesitantly but no where near as articulate and in depth as my fingers are able. As I’m typing this I’m in awe at the speed the words are coming as they certainly wouldn’t if I tried to speak them.

That’s why I found speaking with the words in from of me easier than being interviewed or speaking randomly. When being interviewed, you have to rely on the person interviewing to have done their homework. To feed me key words that ignite a sentence or story that I’ve told a thousand times. One man interviewed me and obviously understand the need for this and the first question he asked was one I’d never been asked. No familiar words to bring to mind a sentence, so instead there was silence as I couldn’t think of an answer……

We are often given a short limited time in which to speak at events and, doe me, it’s important for that time to be filled with the points I want to make, making the most of each precious minute allowed – that’s why I speak with the typed words in front of me.

I type each day as I don’t want my fingers to forget, as happened one Christmas when I took a fortnight off. It would be the end for me if this ever happened, as writing enables me to dispatch dementia to a corner and normality appears for that moment in time.

I’d love to see the image people have of me in their mind – those that have never met me or those who havn’t seen me for a while. What image do they have of me? My writing gives the image of someone even I don’t recognise and certainly not of the reality of me and my life.

I was relieved when other people with dementia started to contact me to say they too could type as if dementia had never entered their world. An American friend, who used to be an accomplished journalist is one such friend. She said in her latest blog:

“If this disease was about how well one scores on State Mini Mental Exam, I would not be deemed to have it. I score 29 out of 30. I can still do many math equations and can count backwards from 100 by 7. But getting out bed and getting through each day requires support and reminders and pushing myself through each task. I literally have to find the courage to make mistakes doing the simplest things now. Like chew my food and swallow. Wash dishes. Put on my coat and zip it, making sure I have my eyeglasses on, my purse and phone and keys, and go outside and walk to my friend Ruth’s apartment. It is insane how hard things have become.”

Yet she types fluently, articulately and with depth and understanding…………and she loves to paint and draw……

You can read more here:

https://suddenlymad.com/author/suddenlymad/

So I can understand how some people question and discredit me. Unintentionally hurt me. We don’t all conform to the classic image of dementia. In fact, few of us do, such is the complexity of the disease.

Twitter gave me a wonderful quote about intuition….our emotions remain in tact even though facts disappear within minutes

“It’s called emotive memory, and also referred to as the gut brain. It stays intact and grows stronger as the “head brain” de-links. People with dementia often have super powers of intuition, and we should recognize and encourage this”

I’m lucky to be able to type words quicker than I can think and speak them. I’m lucky and I know I’m lucky, but don’t let it become a reason to put me down, question me and criticise me and make me feel sad about typing….

My ‘super powers of intuition’ rarely let me down and I know instantly when I don’t like someone because they said or done something that’s hurt me, even though I can’t remember what that might have been……….

My time with 1st Year Student Nurses….

Yesterday was my annual visit to York University to speak to student nurses. I missed speaking to them on their first day this year due to them letting me know the date late and already being booked, so today was my first meeting with this years intake.

I usually do a double act with Sarah but she’s not well at the mo so I trundled in with Gemma as she works at the Uni. It meant an early start but I love seeing the skeleton trees this time of year

I stayed quiet for as long as I could on the trundle as Gemma is not a morning person, but every now and then couldn’t help myself😂…….the traffic was a nightmare as usual but suddenly I looked behind us and there was a lovely sunrise….

We got there and I had an hour to start my blog, get settled and have a cuppa…..perfect……

I’d been asked to speak for an hour on all matter of rambles. As I’m typing this in reception a lecturer has just come to say hello. Apparently he was the ‘irritating charge nurse’ who I used to work with at the Leeds Hopsital…😳😂. Some of his group will be there to hear me speak this morning……shame when I don’t remember people but always nice to meet them……again.

As the time finally arrived I asked a random stranger, who was just passing through, if he’d phone the extension number I had to say I’d arrived……..he was very confused but very obliging……

Paula came down and took me across to the Chemistry building😳….the group was large so they have to take whichever lecture theatre is free…..

The group were just breaking for a cuppa as we walked in. Alison Smalley greeted me and sorted me out with a mike and allowed me to get settled before they returned. There were about 80-100 students I think.

I spoke about this that and everything else and also included the bit that Sarah would have said from a nurses perspective which ended:

Listen to the patient and really try to understand their world and what is important to them.

Also, as a qualified nurse, I just want to say – ENJOY BEING A STUDENT”

I finished with my usual rant about language and misconceptions…..including ..

Every nurse who comes into contact with a patient can have a profound effect on that person. People with dementia, like myself, never lose our emotions, because that’s controlled by a different part of our brain that remains in tact. A bad experience will be remembered for a very long time and leave the patient feeling fearful. A good experience will leave the patient feeling happy and content and grateful for your care. One day I might find myself in your care. What will I think of you?”

The hour passed by really quickly. I’d left time for questions at the end but I’d stunned them into silence. I’d taken 2 American copies of my book as I still had some freebies left. So I said a row and a number for two of them to get copies. It’s on their reading list, which is wonderful. However, once we’d finished I had a queue of them wanting to ask me questions……

I tried to take a selfie with them all in it…..but didn’t quite work. So Alison took 2 piccie of me with them, one of each side of the room……..

I had a lovely trundle into York to catch my bus home and just had time for a wander round the Christmas market….a lovely day…..

Professional Questioning……

There’s one apparently ‘professional expert’ on social media who has constantly questioned the diagnosis of what he himself have labelled, ‘high profile’ people with dementia. This has led me to question his ‘professional expertise’.

He’s an ‘old age psychiatrist’ so not even a neurologist or expert in imaging, so why does he think he has the ‘expert knowledge’ to question when they/we’ve all had a diagnosis with proof?

I’m not sure why he sees it appropriate to publicly question and publicly diagnose when he’s not been involved in any of their/our diagnosis. So why does he continue to do this? He was at it again the other day, not directly at me this time, but one of my dear friends –  what makes a professional behave in this unethical manner?

As I’m sure I’ve said before, I no longer feel the emotion of anger – I have 3 states, happy, sad or content. So I find it incredibly sad when I see such comments appear periodically. It also upsets my daughters, which is even worse.

People like that are the reason why I continue to speak out. I won’t be silenced by ignorance and unkindness.

I wouldn’t wish a diagnosis of dementia on anyone but if he lived in any of our shoes for 24 hours he may change his mind. Does he think we/they ‘enjoy’ living with dementia?

If professionals are supposed to make you sad and depressed then he’s very good at his job. However, I’d really like to think he’s in the minority and many I’ve met have been glad to learn more about the reality to give them a better understanding of their patients and more insight into being able to help them.

I love Twitter, as most people are kind. They can question in a kind way.

I doubt this will ever be the case for this person as he’s continued to do this for the last 4 years. How sad for his patients …….. I no longer engage in conversation with him – what’s the point?

And now I’ve used the block button …….