Category Archives: Raising awareness

Join me on a our bi-annual Recovery college course…..

I suddenly realised, when home from paradise as I scanned my calendar for stuff, that I hadn’t advertised our next Recovery College course – Living with Dementia 😳…..I say ‘our’ as me and my lovely friend, Cathryn Hart, Manager ofthe Humber Research Team, run these courses twice a year as part of NHS Humber Trust Recovery College programme. They’re usually face to face but like most things at the mo, it will be on line and because it’s the NHS it will have to be my least favourite Microsoft Teams instead of Zoom, but no choice there.

Anyway, it’s on July 12th 10.30-12.30 (yes, I know, sorry for the short notice!! 🙈) if you’d like to join us – people affected by dementia AND any healthcare professionals, Care Home staff, and anyone who’d like to join us for a couple of hours – please register by clicking on this link and registering Ignore the date that’s above my piccie, not sure what that means 🙄

Two things to watch, one to listen to……

The first was put together by West Yorkshire and Harrogate Health & Care Partnership and is about Advanced Care Planning. As well as my own views, there are the views of many others. The theme from everyone being: 

Death is as natural as living. We plan for the birth of children why not our death?

That;s me and my lovely daughters at the beginning 😍

This second one was recorded by the lovely Philly Hare from Innovations in Dementiia and features myself and playmates Keith Oliver and Chris Maddocks. The aim of the piece was to describe our vision of the Social Care Future. What the future would have to look like to enable us to live with dementia in a way we wished.

And finally a pod cast interview I did for the American Marianne Sciucco who is a founder member of AlzAuthors.

The podcast is called Untangling Young Onset dementia and is a series of interviews with authors who have written about dementia in their lives…Mine was episode 1, so if you scroll down on the page you should see all the current episodes….

A day of two halves…..

I woke up yesterday, having been cooped up inside all weekend, by either the weather or my body simply not wanting to play ball…’s not like me to stay indoors all weekend and yesterday I decided I’d have words with myself and venture out whether I wanted to or not.

I had the morning to myself but no shopping needed and the thought of just sauntering around town for 90 minutes didn’t appeal, so I decided to try and walk into town and then catch the bus back….

I trundled along in the sunshine, taking piccies as I went, the first at the village pond

“I’m not coming back up until Spring has arrived…..”

And then passing by the beautiful gateway of snowdrops

and on out of the village heading towards the Westwood, stopping every now and then to take in the view….

Once at the Westwood I was in my element taking piccies

And almost forgot the time……I suddenly had to get a wiggle on otherwise I’d miss the bus back and have another 90 minutes to wait 😳🙄…….

One last piccie

I adore trees and their shadows are just as beautiful…

The bus was in as the bus station came into view……..

On the journey back, it became apparent that I’d been spied walking 😂🤣….and they were glad to see me taking the bus back. But then a story unfolded of the Westwood that I hadn’t heard before…..many years ago there used to be 2 kennels, one each side of the road where now lays a cattle grid, which housed 2 collie dogs who were in charge of keeping the cows on the Westwood side of the road. Every time the cows ventured near, the dogs would bark and the cows would get the message. When the dogs were no longer needed, one of the villagers Took one of them in , but eventually had to take it to the dogs charity as it just wouldn’t stop barking all day long – after all that had been it’s job for many years…..

I love the tales of old that I hear from those villagers who’ve been there most of their life…..

My village bus got back at 12 and I being picked up at 12.30 by Katie from the Humber research team as she was my taxi driver today taking me to the Trust Induction. New staff, new opportunity to sow seeds…..

We trundled up to the office as we were a tad early so I caught up with the girls in the office

As 1.15 approached we made our way across to the lecture theatre for the Induction session of new staff in the Mental Health Trust.

Mandy head of Patient Carer experience, joined me and after a hug we were ready for our double act.

It was a smaller group today – only about 25 newbies….and Mandy started off first….

The carer is just as important as the patient”……..

The patient and carers voice is “very very very’ important here at Humber Mental Health Trust. She went onto say how many people don’t like the word ‘carer’, don’t like to be called ‘a carer’……as a husband, for example, likes still to be a husband…….

The Friends and Family Test should be handed out by every department  – it’s the biggest quality measure the NHS has, to highlight the good and bad in all the services.

From April the question is changing from “would you recommend this service to your friends and family” to

Overall what did you think of our service today”

“Would you recommend…..”……wasn’t appropriate as people may be in a service they wouldn’t choose to be in so obviously they wouldn’t recommend it. A child having an injection, wouldn’t recommend an injection……so the question needed to change.

We rely on you to to enable patients to have a voice”…….”every service has a Staff Champion of Patient Experience Forum….but we always need more.”

The NHS 25 years ago was very ‘staff driven’…….now the tables are turning for it to be patient driven, equal partners with the public…..that’s the ideal…….me thinks not quite there yet but Humber are trying…..

Clinicians have the specialist expertise and toolkit to deliver care but the public are on the receiving end and their views of that care are key”

 Mine turn for the last half hour

……..talking about anything and everything including….:

I’ve had some amazing opportunities that I wouldn’t have had if I hadn’t been diagnosed.I talk all over the country in many different setting because that’s how I believe I can influence change….obviously it’s exhausting and takes days to plan even though people think I just magically appear but I always say I’d rather die of exhaustion than dementia.

 But my greatest achievement so far has been the release of my book  Somebody I used to Know, which has become a Sunday Times best seller. One reason I’m showing you it is because it shows you should never give up on yourself, others will do that for you…and this is the proof ..”

 And that was the end for another month. Katie took me back home and the bloomin’ rain started to fall once more so I stayed snug for the rest of the day, flask at the side of me, cuppa in my hand…….



Final trundle of last week was to Luton…….

After the wonderfully different conference with the lovely dentists last Thursday, I left them at lunchtime to head for Luton for the final conference of the week. This time I was speaking at the Luton and Bedfordshire Memory Services Conference…….

I’d had to get everything ready for this week a fortnight ago so I was just hoping against hope that everything was in my pink file. I can only concentrate on one event at a time so couldn’t look at the paperwork until I’d actually got to Luton. If I’d have looked at that before finishing the Dentists event I would have got the 2 confused so times, venues and instructions would have merged into one and I’d have got in a pickle…….

My first mistake was at St Pancras station in London. I was booked on a direct train to Luton, no stops. But the way the man sent me, took me to trains that all had stops on the way. It was even a different train company than I was expecting. So I missed my booked train and simply got on the next one that arrived. Thinking about it afterwards, me thinks I should have gone to the upstairs platforms…..but hey ho….I got there….

My hotel was only 5 minutes from the station, but you have to start walking in the right direction for that to be the case. I don’t think I’ve ever been to Luton, so it was totally unfamiliar but my app got me there eventually……I just had to keep turning round as left and rights were getting in a pickle 🙄…..

It was a strange hotel…….no tea making facilities in the bedroom😳😱…..unlimited drinks but you had to go downstairs every time tou wanted one 🙈 but the staff were nice and helpful, especially when I lost my key card within minutes of entering my room 🤐…never did find it….the key was white, the linen was white and I just couldn’t see it 🙄

Aneeba had emailed me the night before with her mobile number and to check I was ok which was good.

The following morning I had a sore face 🙈…I remember something happened in the night and I’d become disorientated and think I must have walked into a wall or door or something – I just remember it hurt! So I had to send my daughters a black eye alert once more just to warn them 🤐🥴

I ambled the short way to ‘The Hat Factory’, our venue for the day……my app thankfully sent me in the right direction and they were busy setting up…so I sat quietly in my own world typing away. A Gp came up to me and asked me to sign his copy of my book – always satisfying when Gp’s have my book……

It was a strange room where we had the stands and tea as the walls were black curtains so very disconcerting….but Reinhard and Jacqueline Hussey soon joined me for a hug and distracted me…..

I had to take Reinhard’s arm to get me through to the lecture theatre as the floor was horrendous and I had to look up to the ceiling….

Who on earth thought this was a good idea for a floor….🙈

The lecture theatre was also very black so sadly it wasn’t very good for me……..

Aneeba started off the day with general housekeeping

Dr Sen Kallumpuran gave an update on the county services….and used the same sort of slides as Alistair Burns around Diagnosising well, living well and Dying well……which I’ve wanted changed for a few years now…..they trip off the tongue nicely, I just don’t like the phrases…..they were fine when there was nothing else but I think they need an up date now.

Dr Vaness Raymont then gave a talk on prevention in dementia – and the role of research.

24.6 million people in the UK have a family member of friend living with dementia. She said:

We have an increasing problem but we really havnt shifted at all in clinical practise” and

In the clinic we are focusing on diagnosis dementia but maybe we should focus on Alzheimer’s disease that occurs before Alzheimers dementia appears.”

The public often don’t think there is anything they can do to prevent dementia in the same way as they can with heart disease. But there are many changes they can make to reduce the risk. Me thinks this is true but also, if dementia decides it’s going to get you it will but by doing everything right, you’re giving yourself the best chance….

There has been no new medication since 2005.

She believes we’re tackling dementia too late, we should be starting before the clinical changes exist. To do this we have to have a better understanding of this disease. Clinicians and the public have to come to terms with the fact that this disease can be delayed or the risk reduced. So that would mean changing the culture which is not easy.

The ideal would be to start creating personalised prevention plans…..

I think this is where the biggest breakthroughs will be, as well as in imaging and the work of Nick Fox, me thinks the preventing and identifying risk before it exists is where we should be going…whilst not saying to the public if you do XX then you won’t get dementia as this is giving false hope and will cause bigger issues

The slides were rubbish and too many but the words she spoke were good………..why show slides where you feel the need to say, “ I’ll explain this as it looks very complicated’…..🙈🤷‍♀️ and “this is an old slide so it’s out of date’😳🥴

There was a good slide at the end for how all this work will impact on clinical practise, especially changing ‘memory clinic’ to ‘Brain Health clinic” but It felt a very medicalised view…..

Dr Jaqueline Hussey was up next, and me and Jacqui are both on the Young Dementia Steering group network…….she was there to speak about her work with Young people with Dementia in Berkshire……

Because numbers of us are relatively small, so commisioners often think there’s no point providing services but numbers may be small but our need is huge.

Gp’s often don’t record Young Onset so numbers really are guesswork……many people under 65 don’t want to go to ‘memory clinic’ or ‘old age psychiatrists…..Jacqui asked how many neurologists were in the room and there were none. We need to work together and neurologists should be here.

Age appropriate services are often non existent and run at the wrong time. So there’s a high unmet need. There’s little appropriate residential services and current ones that do often can’t cope with a younger age group.

Berkshire has now appointed their first Admiral nurse for Young onset dementia…..they set up the charity in 2012 (Young people with dementia in Berkshire ) to provide meaningful activity for those with young onset.

They wanted, in a world where there is little choice for people with dementia,  people to have choice. So they publish a prospectus every 6 months with various workshops they can attend….people are referred to the charity at point of diagnosis.

The variety of workshops was impressive from wall climbing, choirs, photography, to kata canoeing, running and cycling…..and many more…..

Wonderful work going on in Berkshire, they’re very lucky…..

Me next and once again I spoke about this that and everything, but because of the audience spoke about language more…….including the alternative delivery of diagnosis of ‘There’s nothing I can do”  to :

Yes, the diagnosis is that of Young onset dementia and not something anything would wish to have. But think of it as the start of a different way of living; a way of adapting. I might not be able to do anything for you but there is still so much you CAN do, albeit differently and with support.”

Reinhard, a Consultant clinical psychologist was after me and before lunch

‘Fear’ is what we see when you google dementia – the fear of getting it, the economic fear, the images fear etc…

He spoke of the fear imagery fuelling the stigma associated with dementia…..

He also spoke of getting to know the person and those around them to know who are the glass half empty people who will need more support and those with glass half full who will willingly accept strategies.

He spoke of the various tests they do or can do and knowing the best level of testing appropriate for each in individual…’s important to challenge the current processes and ask what the person would prefer – e.g. would the person prefer a Carer to be present during testing etc, there’s no one size fits all.

People need TIME when delivering information….professionals shouldn’t have to pack everything into the diagnosis process, all the information about signposting and packs of papers should be for another time and not simply because it’s part of the tick box process……we can’t process so much ‘stuff’ being thrown at us all at once. Nice one Reinhard….

It was also lovely of Reinhard to promote Dementia Diaries and the DEEP Network, showing slides of me and many of my playmates….

I spent the lunchtime selling my books and chatting to lovely people, One man, who works at the Memory Clinic,  came up to thank me and said:

“I feel like I’ve had a bucket of cold water thrown over me” such was the wake up call I’d given him…….☺️

Another interesting morning but, again, I had to leave at the end of lunch in order to get back down to London to get my train home at a decent hour but another worthwhile trundle to end the week…..



Return visit to Cheltenham Book Festival……how lucky am I?…

I often end a talk speaking about the ‘advantages of dementia’ ….eye balls roll, cynical looks pass between the audience……the audience always think I’ve totally lost the plot 🤣 But Dementia has opened up so many new worlds to me….focusing on the positives is my way of coping with this bummer of a diagnosis…..

Since my book, one whole new world is that of Book Festivals…and Friday saw me back at Cheltenham Litertaure Festival. I was there last year being interviewed by Julia Wheeler. If it’s of interest,doing a double act with neurologist, Jules Montague you can read about that trundle here:

Amazingly they asked me back again and this year I was doing a double act with Nicci Gerrard. We were being interviewed on stage by Alex Clark. We make a good duo as Nicci writes from the side of the supporter of her father and me, obviously, as someone living with dementia. I always say that both sides live parallel lives, rarely meeting, but both equally important in the need for advice and support, just different advice and support.

I wonder what Nicci thinks of being with me again 🤔 as we’re often put together and will be together again a couple of days later on Sunday at Ilkley Festival, which will be tomorrows blog ………

Nicci has always been very kind and patient with me. She wrote a lovely article when the hardback version of my book came out a couple of years ago.

Any back to Friday……..a blustery night was followed by a blustery wake up call. It was silly o’clock…..we were speaking in the afternoon so I opted for overnight stay on the Friday instead of Thursday. I don’t mind setting off in the dark as I know it’s going to get light but travelling at night can be quite disturbing, with confusing shadows, Inability to see where you are and no opportunity to take piccies to calm me down… a silly o’clock start it had to be….

The taxi driver was from the night shift so one I’d not met. We got chatting and it came out that I had dementia…..he then told me his story – his father has dementia in the later stages. He doesn’t know who any of his children are but comes alive when they visit….I told him why and we chatted more. By the time we’d arrived at the station he was busy downloading my book on audible …….❤️…….it’s amazing how much you can say in a 12 minute trundle……..

The journey to Cheltenham is a long one and involves my least favourite train company – Cross Country……..🙈…..their trains are soooo claustrophobic and squashed…but first I had to get to Sheffield, which meant a change at Doncaster……it was so dark I missed the trundle alongside the Humber 🙄 no stunning sunrises today……just splashes of rain on the windows, car headlights in the distance with windscreen wipers clearing the deluge…….

But a glimpse of autumn on the tops of the trees at Sheffield as I waited for my connection brighten my day

I used to have the lovely Jasmin looking after me at Bloomsbury but she’s now departed to ventures new and I have an equally lovely Ella. She sent me my usual detailed plan of my stay  – and I was told someone in a bright pink t shirt carrying a festival sign would meet me at Cheltenham……Cheltenham looked after me really well last year but I txt the number Ella had given me, just to make sure someone was on the other end. I needn’t have worried as Louise came back immediately so I was a very relaxed bunny……..

I arrived and sure enough, Mr Pinkman was waiting for me and we happily chatted to the lovely writers room they provide to chill…. all the helpers were dressed in pink tops so they stood out wonderfully……it was so windy outside, the tent was billowing and pictures of farmhouse people on the tent walls were bouncing around….😂

A man came over to me, introduced himself as James and said how he’d interviewed me at Bath Festival……☺️…….just nice that he took the trouble to come over and say hello….. and then a Julia Wheeler, who interviewed me here last year and knows my partner in writing Anna!

We would be in the Garden Theatre…..what a lovely name, so I spent the next couple of hours people watching, catching snippets of conversations and just enjoying the wonderful atmosphere……heaven…….and so calming….

Nicci was also with husband Sean French later on. For those that don’t know, Nicci and Sean write as Nicci French, writing crime novels. I remember being fascinated when she told me how she and Sean wrote their books……..

Alex came over and said hello as Nicci was caught up in one of my nightmare trundles and would be here late 🙈….but still with time to spare hopefully. Alex was so nice and smiley and kind. We chatted for ages to get to know one another before heading over to the Garden theatre to be miked up

and wait in the Green Room for 2pm to arrive….Nicci arrived with minutes to spare, but still time for a piccie….

Obviously I wasn’t typing, but I know we had a wonderful time, took lots of questions and it was very emotional….a full house were so kind, so generous in their applause.

On the way to the Book signing, we were stopped by various people just wanting to say thank you, just wanting to chat. Some were in tears and one said she’d now realised she wasn’t alone……. We signed lots of books, had lovely chats with lovely people about their connection with dementia before making our way back to the writers room……

Here I was met by Jill Ronnie and Sue Learner to record a podcast for their series called  ‘Let’s Talk about Care’ ….They’re from from and………it felt like we spoke for ages but again I wasn’t typing so no idea what we spoke about – this, that and everything probably…..I’m sure they;ll let me have the link when it’s published …..

Time for a quick piccie

….before heading back to the hotel totally exhausted but happy…..I’d had such a wonderful day and the pink t shirt brigade looked after me wonderfully……feeling very lucky….

A wonderful event focusing on eating and drinking…….

Yesterday I was invited to speak at another ‘different event’, this time focusing on food and drink. Long blog but lots to tell you……

David Barker from the NACC ( National Association of Care Catering) had asked me to speak at their North Region Summer Seminar in Doncaster.

The best bit of news was that my lovely playmate Chris Roberts and equally lovely wife Jayne, were also going to be there. Chris would be opening the event as he’s an Ambassador for NACC. The Agenda looked interesting, with mealtimes, difficulty swallowing and dehydration solutions all on the list.

David had originally agreed to take me and bring me back, but then Sarah, from the Humber Research Team had offered too AND that would mean I would have my very own therapy dog for the day as she planned to bring her dog, Lola………the company of the dog swung it for me…😂🤣😂

The day started off full of promise and morning sunshine….And became even more brilliant when Sarah Trufhitt arrived with Lola……who was my therapy dog for the day and who spent the whole journey on my lap

We arrived at the venue and went over to the RDaSH offices to have an before and after photo as apparently I’d advised them when designing their new treatment room, which was now finished…

After that we walked over to the venue to sign in and was met by my adorable friends Chris and Jayne, who took me to a quiet area as it was chaos in the first room.

We then all walked over to the seminar room where they had a sell out attendance. I finally met Big Ian from York and a perfect piccie opportunity

Lola settled down on her amazing cool mat and went to sleep with her teddy

David opened the NACC seminar. It’s sooo good to see a seminar devoted to food and drink. Jayne and Chris are ambassadors. It’s not just important for people with dementia, but like everything we always say that if you make it right for people with dementia you get it right for so many others.

My lovely friend Chris, gave the opening talk and they showed the list of things he’s involved in which was staggering but not surprising to me.

He spoke of the fear when diagnosed, how ‘dementia’ was a word used in their house to begin with simply due to ignorance and fear. They now use humour in their family. He stressed the importance of supporting the whole family.

“With all the knowledge we gained we began to live our life which in turn gave us back the confidence we needed to live.”

When you get me, you get one for free – Jayne – BOGOF…….😂🤣😂

Dr Nav Ahluwalia then spoke of the RDash research team, here, of which he is the medical director. He spoke of the 2 words that matter in NACC – care and catering. When the care is lost, bad things happen, when people are denied food and water, they die. They can be more essential that medicines and tablets. Because it’s about life.

If it matters to our patients, it matters to us”

So they’re not a specialist in any area because all areas are important to research if they’re important to patients.

He also showed a lovely slide mentioning DEEP and Lola!!! The power of animals to ‘feel’ should never be underestimated

Next up was ‘Tackling Dehydration for people with Dementia’. A young chappie, Lewis Hornby, talked about Jelly Drops.

They’re a life saving source of hydration…..his Gradma Pat was their chief researcher. She became very ill and. It became apparent that she was simply dehydrated, and for the final 6 months for his university course he concentrated on developing something that would help his Grandma. He found removing cutlery and replacing with finger food became the first step as he created a ‘treat’ – a jelly Drop – which enabled people to hydrate themselves. Brightly coloured bite sized water with added ingredients to aid hydration. Grandma passed the initial drops around but immediately wanted them back 😂….wonderful ❤️

They’ve now partnered with the Alzheimers society as part of their Innovation scheme.

I had to have a piccie with them at break time, Lewis on the left.

During break time people came up and chatted to me and Chris while Jayne and Sarah went across the way to get us a drink……

Drink was followed by a PhD student, Salam, from Hull Uni talking about her study on nutrition and interventions. The presentation was a tad academic, but students all have to start somewhere and hopefully as she develops she’ll become better at presentations for a mixed audience. Just because something is academic, doesn’t prevent it from being able to present it in a fun way…..

Chris showed me piccies of their dog and one superb one dressed in a Santa outfit …..❤️😍

It was my turn next and I had 30 mins to tell my story but also to speak about my relationship with food and drink. It was sooo fortunate that an article I’d written about food had been published in the Observer last Sunday. Sadly when I wrote it my issue with tea hadn’t begun……..

Here’s the online shortened version of the article if it’s of interest to you.

Before lunch there was a talk by Flourish on the dementia garden here.they spoke of the history of the walled garden and they now have Flourish café alongside

We all had a chance to look round it and we had many many official photos taken with Lola at the centre – wonderful.

It was a beautiful garden. The scent of the roses were to die for…..

First up after lunch was Big Ian, a man with a huge personality and a  heart of gold to match……..he started off by saying how when he was younger you always took holiday photos of the one you loved…….but so many dads have died with few photos of them as they were often the ones taking the photos……..

He spoke of Liz (my playmate from Minds and Voices, now in a care home) being the first nurse at St Leonards hospital and now she can’t remember being a nurse…..

He showed a lovely film of Mark Addy, of Games of Thrones fame,  reading a poem written by a friend of Ians……..

He showed a short lovely film…..made by people with dementia and family and friends from Landermeads….

“A film made by REAL experts”

One said…….“Please celebrate what I can do, don’t concentrate on what I can’t do”

If you uproot an 80 year old tree you need to be a very good gardener”

I couldn’t find my favourite film of my playmates Liz’s dad but here is “Dementia is a Team Game, who’s in your corner” – the film Ian made with boxer Barry McGuigan

Ian has a wonderful web site where you can view all his  short films, for which he has no budget but films on his phone……I’d recommend them for everyone as a valuable resource….

His piece was sooo good……entertaining, real, and made people think……perfect…..

Jo Bonser followed Ian……from HCS uk. Wanting to help care managers improve their mealtime experiences ……she asked a David Sheard question……”if you experience someone in your care home displaying ‘challenging behaviour’ at the dinner table, do you see it as your problem for not understanding the needs of the person’

She asked us to close our eyes and took us through a story through the eyes of someone with dementia and then asked the audience to comment on the mistakes that had been made and what could be made better.

It was nice that the attendees had picked up on things…….

She showed a place setting and asked what was wrong with it……I simply summed it up by saying it was rubbish………

She was very good and has written Dignified Dining Solution Guide from her experience with her mum. Her mum refused to eat or drink and the end of life team were brought in, so Jo started to look at improving the dining experience for people with dementia. She calls it her ‘little gift to the universe’ as it’s a free resource. Since then she has recently developed ‘the dementia challenge at meal time’ interactive session that she takes to care homes for staff to work through.

Lindsey Collins from Bradford University was up next, a PhD student who is studying a person centred approach to supporting people living with dementia and swallowing difficulties and is also a speech language therapists…

She told all those in the audience from Care Homes to become part of the ENRICH network, who are the research in care homes network…….

She showed 2 wonderful small videos of what a normal person looks like when swallowing and then the difference for those who experience difficulties……fascinating….

Finding out a by what’s important to the individual is so important to understanding their needs as everyone is different. “See the Person”

As a student her presentation was perfect and slides were simple to follow. She was so smiley, so animated and spoke with such passion……wonderful…….

Eileen Harrington, Founder of DonMentia, Chair of Doncaster Dementia Forum ended the day. She chairs the Doncaster Dementia Forum……her husband had dementia. Eileen had no respite and so now she raises money to organise trips out for others.

With the money she raises, she takes people to various places, but Cleethorpes is their favourite. She always makes sure there’s a meal involved. It’s totally free for people to attend. It’s a local charity for local people. Anyone in Doncaster is lucky to have her in their corner….

The organisers of this amazing seminar tried everything they could to make it an easy and good practice and they succeeded……So huge thanks to the lovely David Barker for asking me but also to RDash for hosting the event so well and in such beautiful surroundings.

I had the most wonderful day and me and Lola were exhausted by the end of it…….even though she slept and snored through my talk….🤣😂🤣

P.s…..don’t mention Lola to Billy……🙄

The second day in London……..

So after Wednesdays meeting with the Young Dementia Network, I stayed overnight, as yesterday I was with Dementia UK (Admiral Nurse people) as part of their LEAP team. I can never remember what acronyms stand for unless they’re obvious. I imagine the L and E stand for ‘Lived Experience’ but can’t remember the A and P…🤔

Young Dementia UK and Dementia UK have always shared the cost for my travel and hotel so I don’t have to go back home as they usually follow one another by pure chance.. It actually costs little more than a return train ticket for each so it makes perfect sense.

Anyway…..I woke up quite early and the television wasn’t working, so I went through the normal routine of scrabble and solitaire… was during the scrabble game that a pop up appeared on my ipad……

😳 weird…….it’s as though Big Brother knew it was me on line…..😂🤣

The meeting didn’t start until 10.45 so I stayed snug on Twitter and typing this before I left for Dementia UK offices in Aldgate at 10…….

I ambled to the tube, got out at Aldgate and looked up to the skyline……

I love the way the old and new sit side by side in London as you never know what you’re going to see. A friend of mine, always says, “never forget to look up” and he’s so right.

I arrived at Dementia UK to be met by the lovely Rachel and Toby….many people don’t know the connection between  Dementia UK and Admiral nurses. Dementia UK provides the training for Admiral nurses but the nurses can be commissioned and employed by a variety of services, including hospitals, local councils, memory services………any service can commission an Admiral Nurse in their area.

Playmates, George, Diane and Tracey were there already along with Suzy and Damian and soon everyone else arrived. So after hugs and chatter George and Suzy started off the meeting.

Suzy always does something to settle everyone in with postcards of  beautiful pictures. The Question she asked today was ‘how are you?’

I chose…….

Because whenever someone asks me to ‘choose’, my mind goes all over the place as I find it sooooo difficult to make a decision….so in that moment I chose the tangled mess……

It was lovely to see what picture people chose and why. How people were feeling about their life at that moment.

Found out what the A and P stands for …..Advisory Panel…….of course 🙄

George then took over….talking about how we can run this meeting better. We often get invited to meetings and they’re run as an ordinary meeting…….we easily get lost and if we fall behind we find it difficult to catch up. So today we’re going to have 2 or 3 parts where we break apart with people with dementia in one group and the rest in another.

Toby then gave a summary of what we’re going to do today ….

So to the first break out about the views around the membership of the LEAP group. We agreed that any papers would have a brief summary on the front. There are 5 of us living with dementia in this group and we represent a wide range of different aspects of dementia which is lovely and varied..

Damian then had a brilliant idea for a research project for where 2 DEEP group could join – North and South. Needless to say I got very excited about the prospect……….🤪

We went through the Influencing pack and the new layout. It’s basically in three section…..but I raised the issue of the scariness of ‘a pack’. I asked if the three sections could be colour coded or separated in some way.

We raised the issue of how do people know an Admiral exists or doesn’t exist in their area and how do people who live on their own know they exist as the perception is, they work with families?

We then came back together and each fed back the main points before a cuppa tea.

During the cuppa tea I had various messages on Twitter to say my name and book had been mentioned in relation to the Dementia storyline on the TV programme ‘Casualty’. So now the news is out I’ll write a blog on Monday about my involvement.

After a cuppa Rachel took us through the strategic aims of Dementia UK and how we need to promote more, especially the nurse led Helpline who can help anyone anywhere. The telephone number in the UK is:

0800 888 6678 or you can email helpline@dementiauk

We had Sarah from the Strategy department to ask how we would like to be consulted…

After lunch we filmed 3 supporters, Frank, Sarah and Susan, giving their views on the difference Admiral Nurses made to them. It was lovely listening to their totally different stories and what Admiral Nurses did for them.

As Susan said, “they gave us that valuable commodity of time”

They all told their story and showed superbly and sensitively the emotional strain placed on both the supporters and people living with dementia. But also the fights and loneliness felt, having to find worthwhile support of any sort.

If any story can stress the need for Admiral nurses, then those 3 varied stories showed it perfectly…….very emotional and very draining but sooooooo worthwhile. Of course they were difficult to listen to but nothing difficult was ever easy to hear. I always say, our lives run in parallel, both have equally important needs.

Commissioners need to be played the film we made of them and they couldn’t fail to see the need for Admiral nurses…..

Must have stopped typing at this point. It was a really good meeting.

On my way back to Kings Cross, the sun was shining and I ‘looked up’ once more.

A ‘future view’ in progress……

Live Diary performance…….

Yesterday I found myself heading for Durham alongside playmate Howard and Philly. We were all coming from different directions and meeting up on a train in York.
I use to be able to get a direct train from Beverley to York but the powers that be in their wisdom decided to do away with this service. So now I have to change in Hull and wait for 30 mins for the train to York. I’d prefer going on the bus from Beverley but they also stopped the early morning service for this one too even though both were well used 🙄

Anyway a 30 min wait in Hull allows me to trundle across the road to Greggs to get a cuppa tea. You may wonder why I don’t go to Starbucks or Costa which are in the station…….well their tea is rubbish……simple😊

So the taxi turned up on a lovely fresh spring day. I got my cuppa tea and then began the slow stopping journey to York…..the sky over the Humber teasing us with promise of a nice day ahead…..

Someone came up to me on the train to say they’d read the article about me and my daughter in the Sunday Times😳 …….well on Sunday 31st, which is apparently Mothers Day, for those who get it, I’ve written an article for the Observer. The photographer came yesterday and won the prize for the most photographic equipment ever to enter my house😂 It was nice that they asked me to write my own article ☺️

I’ve been soooo tired this last week and my mojo has gone absent without leave….but it would do me good to be out and about with lovely people. I know why I’m going – to do a Dementia Diaries Live session – but can’t remember who to🙄 so I’ll have to wait for Philly to find out that bit.

Crikey, waffling or what!……..

Anyway, I got to York, and was met by Philly and we sat and had a cuppa tea before meeting Howard on the train to Durham. Philly went through why we were going.

We’re apparently visiting residents and staff at Housing 21 Extra care – independent living with 24hr care staff on site. John, the Dementia lead for the organisation, picked us up from Durham station and Vanessa Pritchard Wilkes from Twitter met us outside Bramble Hollow.

Philly got us here under false pretences as she said we’d be a small group of 10 however we walked into a lovely room of 60 staff and residents😳 from many of Housing 21’s housing courts. We just happen to be here in Bramble Hollow. What a lovely name with not a bramble in sight……

We started off by chatting and telling everyone why we were there. They started to get very excited about the fact we were doing a ‘performance’ – we told them not to get too excited as we’d forgotten our tutus🤣😂🤣

I asked how Housing 21 got it’s name – Vanessa gave the answer – because they wanted to provide care for the 21st century……

Me, Howard and Philly then did our live performance by reading diaries recorded by many people about a variety of subjects, including a lovely poem by Howard himself which they all really liked and applauded.

You might think Dementia Diaries involve writing a diary, but in fact we record whatever we want to say by ringing a magic number and speaking into a telephone. It’s sort of an answerphone where we can ramble on for a couple of minutes.

Lunch time was a liquid affair for me with a few cups of tea, but everyone else tucked into hot or cold food from their in house restaurant. I’d only taken 5 books (mainly cos I only thought there’d be a handful of people and sold them within minutes of lunch starting. But Vanessa ordered more online for those that wanted one. After lunch we sat and chatted with everyone about what sort of Diaries they could do. But they all went shy and no one wanted to give it a go.

I then asked if anyone would like to do a double act with me and suddenly volunteer hands went up and we brought the audience alive with our banter. So I had a wonderful time with 3 volunteers, Marjorie, Elaine and Sue recording a diary live with me asking them about where they lived. It was so much fun with so much laughter and engagement from the audience and so simple to do. Everyone needs a bit of encouragement and a playmate to do their first diary.

I only managed to get half the room in the piccie!


Dementia diaries is being launched as Housing 21’s new initiative which is wonderful to hear. All staff were on board and so enthusiastic to take it back to their individual places.
Many residents came up and chatted to me and Howard afterwards. Hugs were exchanged and laughter shared. It left me feeling very happy at the end of the day that we’d come into a roomful of strangers and left having made many friends.

If you live with dementia and live in the UK (sorry everyone else!) and would like to find out more, let me know and I’ll pass on your email details to Philly or Rachel. You might want to share a poem, or views on something, or just say hello and tell us your story. I’d love to hear from you, anyone living with dementia is welcome and all voices are heard.

If you’re not living with dementia and would like to volunteer to transcribe some of our ramblings, you can find out the details on the link below by clicking on the tab at the top about volunteering…..

It had been a very long day and we all yawned our way through the train journey. We found ourselves in the ‘Quiet Coach’…….mmmmm that was always going to be a challenge but we only got told of once -ha!

Philly leafy us at York and me and Howard parted company at Doncaster. My head banging, as I’m sure it would for the next 24hrs, but there was a lovely calming sun setting over the Humber..

Couple of recordings…..

Another easy blog for me today……..

Some of my lovely playmates from Dementia Diaries had been given an extract from my book and record their views. You can listen and find them here:

And here’s my response to their kindness…..

I was also at Magic Radio in London recently and you can hear the recording with Emma on this link:

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……