Category Archives: Education

Trundle to my local Hospice….

Yesterday I had a lovely trundle to my local Hospice, Dove House in Hull. The bonus to this is that Sarah works there as a nurse so she was driving me there today on her day off.

We were going to record a piece for use in training staff in the importance of having difficult conversations with patients about Future Care and End of Life.

Anyway they’d reserved a space for Sarah to park right next to the entrance😊 and close by the tree trunk with the lovely carving of a Dove – hard to see the detail on the piccie but it feels lovely.

We were greeted by Elaine who earned the Brownie point for a nice mugga tea. Debi and Chris were already upstairs waiting.

Debi works for Humber in older people services and Chris at Dove House, so they’re working together on this project. Professionals are often not good at talking about end of life and this training is being filmed for Humber staff so they can see the importance of talking about difficult subjects such as advanced care planning which they’re not naturally speaking about at the mo.

Their initial aim is to roll out to 116 Humber staff registered staff. If staff go through Advanced Care Planning themselves they’ll feel so much more comfortable talking about it to other people.

So cameraman Matthew soon joined us and the filming began after shuffling round of chairs and flowers to get the best shots 😂

Chris asked me 6 questions including how me and the girls had talked and why, What help had we had from professionals (ha! None); the barriers and importance for people with dementia and finally, What advice would you give to Professional who are reluctant to talk about end of life’?”

Part of my response to the last question was:

“If professionals are afraid or reluctant, think how the people themselves must feel. They could be looking to you for guidance and if they see reluctance in your eyes or in your tone of voice, that would make them feel immediately uncomfortable about talking to their family. Set an example and show how natural and easy it is to talk about difficult subjects. If you can’t set the example what chance have we got?”

All done and dusted in one take🤣😂 Such a valuable and much needed course……the importance of the language used and facial expression when delivering this conversation is so important and something that doesn’t come naturally to everyone. Hence to need for training.

It was a double celebration day as Dove House was named last night as the 5th best not for profit organisation to work for in the Sunday Times 100 Best Companies⭐️ So Matthew also filmed me saying Congratulations to them all as well…….

A lovely hour or so spent in a wonderful calm and happy place……

A Trundle to Lincoln……

Yesterday I had a trundle to Lincoln to speak at the launch of Lincolnshire’s Dementia Strategy launch event:

I’d been asked a while ago by Paul Harrison, Operations Manager for the Alzheimers Society for South Yorkshire and Humber (Long badge needed!) Paul had put me in touch with a Dementia Support worker in the area who helped me find out the detail.

It was a dull grey day when they taxi man picked me up but at least it was half term so traffic was much lighter than usual so I actually got to the station for the earlier train to take me into Hull.

Now Lincoln is really not a million miles away from me……but I hadn’t realised the hassle getting there and back🙄 Note to self..check the practicalities BEFORE saying yes!🙈

Anyway, I’d committed myself so don’t like to let people down when it’s my fault, so off I trundled with more detail than normal in my pink folder. So here I was on a verrrry slow old train to Doncaster. At Hull station there’d been a brand sparkly new Transpennine train – we never get anything new in Hull!🙄 but then realised it wasn’t actually being used for people……just testing if it could make the trip to Hull🙈

Storm clouds and chinks of blue……

I then caught an equally old train from Doncaster to Lincoln and was surprised when it only had one carriage 🤔…..strange how it’s direct going but not coming back ………🤪

I text the society support worker when I left Hull to check she was still ok to meet me at Lincoln and began to panic slightly when after an hour I’d had no reply😳😳😳😳😳😳😳😳😳😳😳

Still no reply to another txt from support worker 2 hours later so I txt the manager Paul ………then emailed all of them………in the hope that someone would see it but got 2 out of office back🤢…………then emailed Jane from Head office……..

Luckily, Jane thankfully replied quickly and said she’d rung the support worker and she was meeting me………..and gave me another mobile number which I txt……..but still no reply……..😔

Now I’m not saying the next bit to embarrass anyone or want to get them told off or anything, but just as a means of learning how to support someone with dementia……

I imagine some people see me as a confident person who can sort herself out and I often can when going to places I know…..but I do have dementia, I do need support, especially when going somewhere I don’t know. Just a friendly txt shows me I’m not alone.

If you give someone your personal mobile number and then say ‘we can make sure we keep in touch and don’t miss one another’……I really expect to have a response to a text. If for some reason there’s a change of plans on the day, then a simple text to say, ‘Sorry, won’t be able to txt but will be at the station waiting’ is all it needs to make you feel less alone on a journey to somewhere that you havn’t been before…….it could have ended so badly as I was already working out how to just go home again……..anyway, as I said, not wanting to beat anyone with a stick, just wanting lessons to be learnt as we all have to learn somehow …..and she did look after me well at the venue and took me back to the station. I just wasn’t sure that anyone understood what the big deal was in the morning, hence why my comments here, to simply educate.

by pure chance and unexpectedly, my daughter Sarah txt me to see if my journey was going ok and looked at her tracker to see where I was😊

So the support worker was there to meet me and I breathed a huge sigh of relief. I finally arrived at the venue and just wanted a cuppa tea to settle me down….. lots of people coming up to me and saying hello and that they’d met me before😳. The nicest was a Gp coming up to me to say how my book had made her look at dementia differently and enabled her to look after her mum better – made my day…..❤️

While someone was getting me my second cuppa tea, I spotted my only familiar face in the room of Hilda Hayo from Dementia UK. So after a hug and 2 cups of tea later, the workshops started and I just stayed where I was, so had a workshop about Sleaford Dementia support, an independent charity … Bex talked about how they get funding from local people raising money  and the sort of antics they get up to, including fish and chips at Skegness….
We watched a video of people saying why their peer support group is so important to them. Wonderful….

Someone from the CCG came up to me and said how a Gp had spoken to her to say that every Gp in the country should read my book…….❤️

Quote of the day from Beks of Sleaford Support was:

“It’s the little things that make people smile”……

couldn’t be more right, especially after my experience in the morning.

Because I arrived late lunch soon arrived and I made my way downstairs to look at all the stalls. Lots of people saying hello and I had a lovely piccie taken with the Join Dementia Research girls….

After lunch the head of the CCG introduced me very kindly and I spoke for about 30 minutes. Part of what I said was around the language used by clinicians when delivering a diagnosis……..

An old age psychiatrist then spoke…..and immediately lost any brownie points he may have gained by saying nice things about my talk at the beginning but then talking about people ‘suffering from dementia’……..even though I’d just spoken about language………..🙈🔫

He did speak about his opinion of advanced care plans being needed and encouraged so he gained a crumb back….

It was a very medicalised talk unsurprisingly but then an Occupational Therapist from the same hospital spoke of the social interventions. She spoke of challenging the boundaries and the way clinicians think of a hospital environment.

Hilda Hayo was up next speaking out for the Admiral Nurse service. She spoke of the triangle of support and where Admiral Nurses fit in. Tier 1 is needed by everyone, tier 2 is bespoke but a post code lottery, Tier 3 is where Admiral nurse strength lies on the complex needs. Their helpline is there for everyone. Some services are there until end of life but they support the family after a death.

They’ve just about to have Admiral Nurses working in this area – wonderful. They will have total coverage in Lincolnshire – a very lucky area. They concentrate mainly on family and relationship approach and help build resilience in families and sometimes rebuilding them.

Brain must have had enough after Hilda as no typing🙄 so am typing the rest on the train home.

The people were really lovely there and wonderful initiatives, especially a web site but can’t remember the detail.  I’m glad I ventured into Lincolnshire. One image I have on the way out of the room is of a man with dementia and his wife stopping me and giving me a big hug as my talk had given them hope❤️………

Dementia and Cancer……..

It’s been such a quiet week for me that it gives me the opportunity to share news from others.

This week I had an email from one of my favourite species…..a PhD student from Leeds Beckett University, Mollie Price. Mollie is doing her PhD on living with dementia and cancer and exploring the experiences and support needs of those caring for those with the dual diagnosis. I’m monitoring one of her fellow students research on the dual diagnosis but from a different angle – I like it when all the student studies are interwoven and compliment each other. This way they can help each other but it also helps us see the bigger picture instead of research projects being done in isolation…….

In her email she said:

“As part of my PhD project, I have recently launched an online support forum specifically for carers of people living with dementia and cancer within the Alzheimer’s Society’s online community ‘Talking Point’, where people supporting a loved one with both dementia and cancer can come together to share their experiences, and offer each other peer support and advice. We are also hosting Q&A sessions on the online forum with experts in dementia and cancer. The first one was hosted last week by Lorraine Burgess, a Macmillan Dementia Nurse Consultant at the Christie NHS Foundation Trust in Manchester. We are trialling the online area for a period of 6 months.”

Well, always happy to help this lovely group of people so here’s the link:

A Trundle to York…….

Yesterday was the first day in ages that I’d had two events back to back and it didn’t come easy. I was soooo glad I’d organised everything for the week on Sunday, as I always do, which meant paperwork, tickets and instructions were waiting for me on the side to put in my pink folder.

I was at Bradford Uni the day before and yesterday I was with Bradford again but at York for an event to celebrate one of the studies I’ve been involved in.

I’d got back the previous evening very tired and brain dead and then had to get up at silly o’clock for the early train to York. Normally this would be easy peasey as it’s my best time of day, but once again, routine has gone out of the window and 2 days running of out and about was hard.

Anyway….hopefully I’ll get use to it all again. It was a very different day from previous and the playful skies over the Humber had been replaced by an unwelcoming grey rain filled sky……but still there were chinks of hopefulness ….

Sandra was meeting me at York station for us to amble down together to the lovely Railway Museum – a train enthusiast paradise.

We were there to promote the findings from the BHiRCH Pilot project – Better Health in Residents in Care Homes. The aim was reducing avoidable hospital admissions from the care home.

As always, it’s been wonderful being on the reference panel for this. I often say that I’m doing it for purely selfish reasons – i.e. wanting to make things better for when I need them😂 but in this case it just reignites my thoughts on not wanting to ever go in a care home. So maybe I’m doing it for others with this project as some people want or have no choice but to go into a care home for various reasons.

Sandra’s train was late🙈🙄 but we’d left lots of time so ambled to the Museum. We were early so a cuppa tea wasn’t ready🙈 but we were early so forgiven. When the tea did arrive they had lovely big mugs so immediate brownie point……..but quickly taken away as when I went back for a second cup and they’d run out of water AND tea bags😱…….. had a strange concoction of Afternoon Darjeeling tea, which someone told me was real tea…….wrong………

Anyway, back to the session. The room was chocca as the event sold out days after being advertised…..
Prof Raymond Koopmans from the Netherlands was the first speaker.

In the nursing home where he works they have separate units, one being for people with Young Onset and day centre for people to stay active. Mmmm interesting. The Dutch government fund the University Care Home Network.

Here Care Homes have a designated GP but in the Netherlands they have specialist geriatricians. It’s a unique specialty in the world. They are employed by the Care Home.

They work 24/7 and have to be with a patient within 30 minutes any day any hour. All residents have electronic resident files which the doctors can access at home if out of hours and prescribe electronically.

Someone asked a question asked about funding and his response was that all care homes are state funded.
The charge to the resident depends on their income but everyone gets some if not all financial help.
In the Netherlands they have the money but have a severe shortage of nurses. They ideally want a ratio for 2 nurses on 8 residents…

I asked if the Netherlands have the 3 tiers as we have of Residential, Care and Nursing Homes?
His response was, since 2015 all residential homes disappeared as emphasis was put on staying at home but this huge transition has led to the Nursing Home system being under huge pressure hence the lack of nursing staff.

A really interesting talk on a system elsewhere in the world and comparing it to ours………..
Are we all moving to the Netherlands……?🙄 the room was busy looking up flights and packing bags…….nurses thinking of a change in country maybe 🤣

Next up was Prof Murna Downs……this project has been going on for 5 years……yes they want to keep people out of hospitals, but the main aim is for better health in residents in care home who are often hospitalised for conditions that could have been treated in the Care Home. They concentrated on 4 condition, for example Dehydration and Urinary Tract infections. It brought us back down to earth talking about this country’s system……

The Stop and Watch Early Warning tool is a simple tool available on line for anyone to use……..

Older people respiratory problem don’t always manifest in coughing, they become quieter….so knowledge is key to identifying changes early. They want the care assistant to feel a key part of residents medical care. But to do this they have to have the knowledge and training and TIME to do this. The family should also know the process as part of the care team as they often know best what’s normal and what’s a change.

Next up was my lovely friend Barbara Woodward-Carlton……who heads the Carers Reference panel, which I’m a member of……. Barbara told the story of her mothers traumatic experience in hospital. For her to say, ‘I don’t like it here’ was very significant.
She spoke of the important role of the Carers Reference Panel for this project. Bradford Uni of Dementia Studies has such a panel on all projects.I’m on lots of them, which makes me very happy.
She spoke of how Care Assistants are undervalued and underpaid.
Wonderful Barbara🥰

We finished before lunch with a panel question time. Liz asked the question of the day
”what is difference in the culture of the Netherlands that means the elderly are valued and funded in later life”……….He answered by saying that the current government has an interest in elderly care. He also said how one or 2 celebrities had a mother with dementia and wrote a book about it which attracted high profile discussion and helped lead to a change in culture.

In the Netherlands people do not have to sell their homes to pay for care……..

Very good questions, very good answers and then time for lunch………but it was by pure coincidence that I had a comment from someone from the Netherlands on my blog yesterday saying how there is little knowledge of Young Onset in their country……another case of you don’t know what you don’t know maybe?

Our unusual lunchtime venue!

The long day the day before followed by an early start yesterday meant brain shutdown came early and the afternoon session was lost on me sadly but I imagine it was very good……

What I did take in was that It was so refreshing to hear researchers stating the negatives as well as the positives. So often we’re given an ideal interpretation when a more balanced view is needed. That’s what we got today. The most interesting observation was that there weren’t as many unavoidable admissions into hospital from Care Homes as previously thought. So is the hype, political hype, to give the impression that more blocking of beds is coming from Care Homes?…….really interesting food for thought and just goes to show you should never believe all you read or hear ……….

People often ask me how I get a blog out so quick…….well I type it in real time, on my journey and then throughout the event. By the time I’m home, all I have to do is add the piccies from the day and hey presto it’s done. If I didn’t do it like this and left it until afterwards I wouldn’t remember the detail……😊

It was lovely to trundle past Wressle Castle bathed in sunshine as all I could do was stare out of the window……very tired but another good day……

Listening to the work of my favourite species…..

Yesterday I trundled to see my favourite species – students at Bradford University. This time I was there as an Alzheimers Society Research Network monitor for the DCT (can’t remember what DCT stands for – hate acronyms 🙄)……….

Anyway some of the PhD students were there to give us an update and presentation of their work so far.

It was a strange start to the day as my legs and brain had obviously had an argument and weren’t talking to one another… the station I even had people helping me on the train and the guard showed me to a seat, so I must have looked a tad discombobulated and legs and body out of sync😳🙈……..there’s no routine for the necessity of early rises and train journeys at the mo, so maybe that was it…….I’m also a bit doped up with tablets at the mo, so that could be another reason……who knows………maybe they’ll make up and talk to one another soon 🙄

Anyway the trains behaved in the beginning and I’m typing this on the second train to Leeds.

The sky looked almost playful as we trundled along the Humber

I arrived in Bradford amazingly on time, and wobbled my way up the hill to the Uni where I found Sandra, Barbara and Jackie in the cafe and Vivien joined us in the room …….The students were all ready and waiting with their supervisors all ready too  and Paul had the first slide up on the screen

After a cuppa tea, catch ups and hugs, we were ready to start……

Barbara started the meeting and we introduced ourselves. Students, Helen, Angela Suzanne and Paul were the ones under the spotlight today. We celebrated Courtney’s and Denise passing of their PhD – amazing………both were sadly not there as they’re now working!

We suggested they make a mini podcast on film giving us an update of what they’re doing now😊

Murna then spoke about a possible celebration and dissemination event in July to celebrate their graduation.

Paul was the first to present an update – his study is on how people with dementia manage their medicines at home with the help of community pharmacists………

In the literature there is little in relation to medicines management particularly of those living alone…..
So this formed the basis for the questions for his project…..he will be gathering information from people with dementia on attitudes, challenges, routines and strategies, Types of support and what would help……..
And then ask the same questions of pharmacists……

I asked the stupid question “What is a Community Pharmacist’……..I hadn’t realised there were basically 3 types, Hospital Pharmacists, Pharmacists attached to Gp practices, and Community pharmacists (the normal high street pharmacists)

Sometimes it’s the simple things that help……for example medication in liquid form than tablets. I mentioned the importance of colour – if I needed 1 familiar pink one, that stood out, then giving me 2 white ones won’t help…..

Suzanne was up next……her study is on investigation the quality of medication management when moving from care home to hospital and back again.
It will hopefully inform improvement into the practice and influence policy.

She’s looking at policies in the hospital and care home – their roles and responsibilities at transition points between the 2 establishments.

There seems to be so much confusion about best practice around medicines and transition between care home and hospital and in reverse…
The question was raised around responsibility when someone with dementia is admitted to hospital – should someone from the care home go with them? But is that practical if the person maybe in A&E for 10 hours or something. Who is accountable for information transfer? It’s the tiny detail that makes the difference between someone taking medication and someone not.

It’s not just a list of drugs that’s needed, it’s the finer detail about the person themselves that’s useful to know.

Paul gave the quote of the day……“Without responsibility there’s no accountability”

Lunch and cuppa tea time and the students gave me a belated birthday card……🥰🥰🥰

Third up after lunch was Angela who is looking at the nurses role in transition between hospital and care home paying particular interest in the discharge process.

Her main questions are around roles and responsibility and the barriers and facilitators for implementing these roles.

She is gathering both perspectives from nurses and care home staff about what is their role when someone with dementia is being discharged back to the care home.

She found a lot of variation in practice around information exchange. Lots of tensions within the system.

The one side don’t understand the others practices … there’s no joined up working sadly. IT systems don’t talk to one another which are big barriers to helping good practice.

I said how hospital managers and Care home managers and Pharmacists, need to be invited to hear the outcomes of all these projects. They need to be made to look silly as they won’t believe the staff on the ground have the problems they have. No good having the staff as they can’t make the change but managers should be made accountable for such rubbish and disjointed systems. They should have a job swap for a day… nurses have very little knowledge of what goes on in a care home. They don’t see how they are all one big team. There’s a cultural issue of how care homes are viewed.

Finally Helen gave us an update about her project. Talking to women who lived on their own when diagnosed but not necessarily now. She is doing it through narrative research, so gaining valuable information through conversations. However, she found it so difficult to gain interviews because, she thought, of racism and gatekeepers. It’s about people attitudes and assumptions. Dementia has silenced a lot of people as gatekeeping comes into play. The mental capacity act is being used to stop people doing things instead of enabling. She has only been able to get women through word of mouth. No other method has worked for her.

From all I heard there was soooo many examples of why I never want to go in a care home…..or into hospital……….

At the end me, Sandra and Viv met with Prof Jan and Prof Murna to discuss the meeting from the perspective of the Alzheimers society research network monitors……..just so we could complete our feedback form.

Needless to say we were well impressed as we always are here at Bradford. Seeing the students eyes light up when they speak with such enthusiasm is a joy……….wonderful…..

After Sterling, it was the turn of Durham……

I had an amazing time at Sterling, but all good things must come to an end otherwise they wouldn’t be special. And so it was on Thursday morning I awoke to a very different Stirling outside my window. It seemed to be feeling sad like me at leaving with no sunshine, just an eerie white glow of frosty silence

The taxi arrived to pick me up at 10 for the station. We chatted away and the driver admitted how he failed to look at the snow capped mountains anymore as they were normal and he’d seen them all his life. Strange how we rarely appreciate the beauty around us when it’s been there all our lives.

The train to Edinburgh was on time as was the train to my next overnight stop – Durham.
Once more we passed the amazing scenery of the east coast and the sun shone a welcoming light once more

I was in Durham for a Research Project I’m part of – The Co-Designing Dementia in Durham Advisory Board – but this wasn’t until Friday. They’re looking at how they can improve services in the Durham area.
Rowena, an Alzheimer’s Society Dementia Support worker in Durham, had seen I would be staying there and asked if she could meet me to discuss some work she’s doing with Social Work Students – it was the word ‘students’ that did it………..

The staff couldn’t have been more helpful at the hotel and gave me a map to walk the short way to the Cathedral and Castle – what they didn’t say is how steep a hill it was😂🤣😂……anyway managed to get a piccie…..first of the Cathedral and then the Castle next door……

Got back to the hotel and once I’d had a cuppa it was time to meet Rowena. In this area they have 4 support workers and 5 dementia advisors and now have 18 people in their office in Chester le street – in 3 years they’ve gone from 3 to 18 – she was very passionate and her eyes sparkled when she spoke about her work….She’d made contact with me because at a dementia friendly meeting Anne White (I’m sure that’s a Twitter friend 🤔) suggested I might like to talk to social work students doing a masters at Durham Uni ….and they’ve also got contacts in Sunderland Uni, and Northumbria Uni ……….her 3 young children are all dementia friends. She mentioned another playmate from social media, Gill Taylor who will also be helping her….👍

She worked with a couple where the husband living with dementia had trouble speaking, and the wife was getting very frustrated and annoyed with him. Rowena made him some cards with pictures on that he could show his wife – so when he wants a cuppa tea he shows her a piccie of a cuppa tea – result….and now the atmosphere in their house is far calmer and happier – simple yet effective solutions coming to the rescue again.

Anyway, just time for a selfie before she left with me promising to contact her when I’m back home in front of my calendar…some wonderful work appears to be happening in Durham….

Looking forward to the final meeting today before I can trundle home. I did get in a pickle with an usual shower door…it didn’t open out or in or slide….panicked cos I couldn’t get out and then banged the side of my head when it opened unexpectedly, so just warning my girls that I may have a black eye when you see me….. 🙄. I know perfectly well not to panic but I did🙈. ….

It’s been an amazing week but soooo looking forward to being home tonight………🏡

How lucky am I…..?

So many opportunities have come my way since being diagnosed with dementia. It was a very lonely place to begin with, people abandoning you, not knowing where to turn or what to do. But the glass half full person in me wasn’t ready to give up on myself and I went about looking at how I could share my diagnosis for the good of others. It didn’t come easy in the beginning. No one knew me, people didn’t see what I could bring to the table. But I kept banging on doors and now thankfully, on many occasions, people bang on my door.

It’s lovely to get requests to speak in different environments to different professionals. So it’s that very scenario that saw me trundling up to Stirling University on Tuesday…….a very long journey, yes, but wonderful views and they’d kindly offered to accommodate me for 2 nights so I wouldn’t have the long journey back after speaking.

It’s times like this when I wish I could drive again as it would be lovely to explore all the wonderful places I’m invited to but sad that I can only venture a little way in a straight line so I can find my way back! But I still saw some beautiful scenery.

And so it was yesterday that I had the pleasure of speaking to students on their Masters in Dementia Studies course.. The course is aimed at practitioners who work in the field and wish to develop their skills and knowledge of dementia care and support. It’s a distance learning course but at the beginning of each semester they hold a campus introductory day and invite any students who are able to attend. Richard Ward, the Course Director had invited me ages ago after telling me my book was on the core reading list for the course and set text for the second year module☺️

The students come from a diverse range of backgrounds including hospitals, care homes, community-based services and day care to name a few.

After the wonderful trundle and beautiful views of Tuesday, I had a very restless night and woke up with a banging head and painful face. My Fitbit confirmed my feeling of a bad night. The thin red lines showing my wake, sleep, wake sleep ……

I checked my tablet box but I had taken my jaw tablets so goodness knows why. I’d also forgotten, what I call, my head tablets – these just help me calm a banging head but they must be in my little suitcase🙈🔫

Really didn’t feel on top form, but as is often on these days, I’ll walk into a roomful of smiley faces and all will be well in the world. Fingers crossed.

Twitter had been lovely with lots of messages from students who will be there.

I wasn’t being picked up until lunchtime so I took the opportunity to walk round the Loch and get more piccies. I knew my favourite species, Students, would redirect me if I got lost and the ones that walked by were all smiley so I knew I’d be in safe hands.

The views were stunning……

Anyway, back to the reason I was there! Grant came to pick me up at the agreed time and we walked to the Iris Murdoch centre a short walk away.

We arrived to find everyone having stopped for lunch, so a cuppa tea appeared and I was happy. Sooo many lovely Twitter friends came and said hello, but I wasn’t typing 🙈 so can’t remember their names.

Richard, the course director introduced himself and we sat with cuppa teas appearing out of nowhere😊 Because I wasn’t typing, I havn’t a clue what we chatted about but I just remember lots of lovely people and smiley faces.

After lunch was finished it was my turn. I spoke for about 50 minutes (Ithink!🙄) about this that and everything. It included this bit on allowing us to live not exist:

Which brings me onto positive risk taking… often for the kindest of reason people wrap us in cotton wool. We become labelled as a ‘vulnerable adult’. I recently saw my medical history and on the 17th May 2018 I became a vulnerable adult. Goodness knows what happened on that day but it’s there in black and white. Maybe it was the day I did a Firewalk for my local hospice or went up in a glider which was a birthday present from my daughters….goodness knows what I’ll be labelled on the 9th March this year as that’s when I hope to do a Skydive for Young Dementia UK”

There was time for a few questions at the end. It seemed to go down well from the lovely comments afterwards. They recorded the talk, which is always nice. In return they all allowed me to have a piccie with them outside with the hills in the background.…

Before I finally left they asked if they could film me answering some question for a 2 minute clip upstairs. So after waving goodbye to all the smiley faces we trundled upstairs and recorded a short clip – again, havn’t a clue what about but I remember we laughed a lot in the process 😂. And it gave another opportunity for a piccie in a mock up of a living room…..

Someone lovely walked me back to the hotel where I’m typing this before the memory disappears. What a wonderful afternoon with amazing people. Exhausted but the smiley faces sorted out my pain…..Thank you Stirling😊

Travelling to Scotland………

Now how do I catch a train…..? Remind me again……

Last week saw my first trundle on a train for weeks due to the Christmas break. I knew it would be a strange one. I knew it would take concentration…….a difficult process at this time of year.

I was sooooo glad I’d set reminders and done some things before Christmas as the process had become a mystery to me along with many other things during the long quiet break.

A reminder to book a taxi appeared – crikey, I’d even forgotten that… even reminded me to see if my daughter was free to pick me up🙄

My tickets had been booked and collected before Christmas so they were also waiting for me, thank goodness. Sticking my hand out to stop the train still makes me chuckle, but it’s what I do for the bus. So it just seemed normal for me……..

It’s been difficult getting ‘back to normal’…..relearning normality. Just getting up early has been difficult. You might say, well yes, we all find it difficult to get up after a break from work….but it’s a different ‘difficult’. I’m not trying to say we’re a special case, I’m just trying to highlight the difference.

Dementia is very clever at giving us a new normality if we’re not careful. A relaxing, gentle doing nothing normal……and before we know it, dementia has taken hold, so I had to snap out of the haven of peace.

So yesterday was my second train journey of the year…..this time to Stirling University in Scotland. Once again, everything had been sorted before the Christmas break. Tickets were waiting for me as I turned the page to this week, along with the printed emails I needed to say who what when and where……

I had to rely on the fact that I had everything sorted…..had to trust myself, which is very difficult at times….

We can be deceptively confident in the responses we give and thoughts we think, but sadly they’re often false, even though to us they’re true. I remember being confident in saying something to my daughters recently, but they pointed out in their gentle way that I’d got it wrong. I have to trust that what they say is right but it can make you feel very confused and sad. But before Christmas, I was in the routine of ‘preparing’ so I had little choice but to trust I’d done everything…..🤞

The most difficult bit was medication…….medication for 4 days….😳 I normally just have them all set out in the weekly travel box, but this was when I took everything in a morning🤯 now I have evening and during the day ones too. I hunted around to see what I could find, and then I came across some different tablet boxes……me thinks I must have had this issue before and bought these……See! I was so organised I didn’t even know I was organised🤣😂

Anyway,  the journey started off with beautiful sunshine across the Humber….

I was so looking forward to this journey as the East Coast trundle to Edinburgh is a beautiful one taking in lots of the coast.

It was very weird going through York. I always use to stop or start there😳 but then I could sit back and enjoy the views…..

I’m sure I’ve been on this train journey many times but the views never cease to make me smile

Grant Gibson from the Uni had agreed to meet me at Stirling station, and I’d txt him at the start …..just to check he’d be there so I could relax even more. He appeared as promised and drove me to the hotel that would be my home for the next 2 mights. At reception one of the students was also just arriving and had spent her journey reading my book☺️

After a cuppa tea and a settle into my room. I just had to go for a wander and take in the amazing scenery around the campus…..

The loch in the middle of the campus with snow covered hills in the distance…

and finally, a lovely sunset outside ny room….

Soooo looking forward to meeting the students tomorrow….but now after taking well  over 7 hours to get here…..I just want to snooze………💤

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.

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……