Category Archives: Talking

My last blog of the summer…..

I’m taking a short break from blogging. I was looking back at previous years and I always took August off. I just forgot until I was looking back 😂🙄……

It’s not that I’m stopping typing, heaven forbid. I learnt a hard lesson one Christmas which still sends shivers up my spine, the stories in my book. I’ll still be typing just not publishing. I’ll be back in September when hopefully normality will resume and children will be back at school again…and maybe even back in my paradise by the time I start up again…..

But I thought today I’d let you see a short video I made for Yorkshire Ambulance, in fact I made two….but I can’t find the first 🙄….anyway here’s my chat with the lovely Laura Williams…

As someone once said…”I’ll be back….”

Plan for Tomorrow, Live for Today……..

Last week I received a copy of “My Future Care”, sent by the lovely Zoe Harris, founder and CEO of My Care Matters.

“Mycarematters is a social enterprise with a mission to improve the experience of care in any care setting. We enable the whole person to be taken into account by all those caring for and interacting with them.”

I’m sure I must have met Zoe in person on our various travels around the country, but our main connection is through Twitter…

Many people, when diagnosed, like to forget about the future, some like to bury their heads in the sand and pretend it will take care of itself. Well, undoubtedly it will, be will what happens, be what YOU want to happen? Have you spoken to those closest to you about future care, about death? It happens to us all!

Well me and my daughters have, but last Sunday me and Sarah went through The handbook page by page and even we found it helpful to clarify some points, to highlight some detail we hadn’t gone through. I knew I’d had recent up to date conversation with one of them but can never remember if I’ve spoken to both, so this helped with that too.

Sarah is an nurse in Oncology so has these types of conversations with patients all the time, but for many families, they may have never spoken about anything like this so need direction, need guidance.

For those that have never had those conversations, or maybe don’t know where to start, it felt like a gentle process. A simple, straightforward, tour of everything we needed to talk about. And if you were worried about the sheer volume of information, there was a useful ‘colour coding’ to highlight what you should read if nothing else at the bottom of the Index…

There were, as I said, things in there that made me think. For example in the funeral details bit, Sarah asked where is my address book? I could also tell Sarah that I didn’t want a funeral as such and instead want a ‘straight to cremation’ with a celebration gathering once they’d received my ashes, so I could ‘be’ there 😂🤣….The image of both my parents disappearing through the curtains for cremation having stayed with me and not what I want my daughters to remember.  I also want the celebration it to start at 11.55……a special time which many will understand the relevance of….or maybe just something on line at 11.55 so my daughters don’t have the hassle of organising anything🤔…mmm more thought needed me thinks…

But before we got to that conversation, we were taken through all the maize of forms that exists and which should be completed – the Will, Advanced Care Plans, Lasting Power of Attorney, Letter of Wishes and the other myriad of ‘stuff’…but it didn’t seem overwhelming. All the forms are a minefield if you have to discover them yourself, but here they were all present, in a logical order. We did think some bits started to get confusing until we realised, it was because we’d already gone through the process, we didn’t need to plan…

Yes, I was lucky, we’d had all these conversations. Many others can use them as guidance, for information and for useful reference.

The biggest advantage I can see is that it gets people talking. My daughter had to help me as I can’t write consistently legible so no one would have been able to read it! But even if you wrote it yourself and handed it to those closest to read, as a starting point, it would be invaluable.

Sarah said afterwards:

I found the handbook very easy to follow, in a logical order and covered everything. We, as a family, have done most of the advanced planning, however, the funeral planning was especially useful for us to revisit and discuss.People in the earlier stages of planning should find this to be exceptionally informative and a prompt for useful guidance and discussion”

We plan the birth of our children in any way possible, so why not our death?

Once you’ve had these discussions, you can carry on living your life in the full knowledge that what happens in the future will be a lot smoother than if you hadn’t plucked up the courage and TALKED ..…..

 But as the message on the front of the handbook says:

Plan for Tomorrow, Live for Today”

Yes, the handbooks do cost, they aren’t free. But Carematters is a not for profit organisation and it has cost them to print so, like anything it does cost to produce. And yes I got it free, so would I have bought it if I hadn’t. Well, if I’d was at the start of or confused by the maize of processes, yes I would buy it. The content is invaluable and what price can you put on peace of mind?

More information of the handbook on their blog web site:

Or on their normal web site:


The Simple Act of Talking and Listening…..

An easy blog for me on a today as it’s a link to my second blog on Psychology Today published at the weekend.

Why do so many of us find talking and listening to difficult conversations so hard? Well again, when diagnosed with a life limiting condition, no one helps you and those closest around you, to learn how to talk and what is important to say at a time when you can still communicate.

Not everyone finds talking or listening easy…..but it can save so much emotional distress to those closest to you if you take the plunge and start talking…..

The three wise monkeys from my dear friend google are of no help whatsoever in these circumstances……🙄

See what you think by clicking on my link to the article below …….

Not everyone can stand up and talk………..

A while ago I wrote a blog entitled “Not everyone’s a Wendy” due to someone in an interview commenting that not everyone can do what I do. Well of course not and I can’t do what other people do…….🙄……..we’re all individuals without dementia and nothing changes with dementia.

However, todays blog is along a similar line. There’s been much talk recently of the same people being given air time to talk about dementia; to stand up and talk at conferences and events about our experiences. Well my response to this is:

Not everyone can stand up and talk in front of an audience”

Courtesy of my dear friend Google……

Just the same as people without dementia……not everyone likes to do that or has the skills and confidence to stand up and have people staring at you and listen to what you have to say. Just because we have dementia doesn’t suddenly mean we all have the same skills…..

However, for those who would like to stand up but don’t have the confidence, we should encourage them and find different ways to support them and allow them to be included.

My peer support group in York, the wonderful Minds and Voices are a great example of this. Many would not have the desire or the confidence to stand up and speak on their own, but would like to be part of something, part of the excitement.

So recently at a research event in York, I first asked Eddie and Elaine, who do have confidence but need a tiny bit of encouragement, to come up on stage and join me and say a few words at the start of our conference.
Then after lunch the whole of Minds and Voices came on stage and because we were all together, those who wouldn’t have dreamt of doing something like this, felt comfortable. They weren’t under pressure to speak, they were with friends, and each and everyone said something. This enabled everyone to experience the applause and gratitude of the audience. Within the group we have people at various stages…….

It made the day special and they felt good about themselves.

Another recent example was at the Admiral Nurse event in Oakham. Me and Rachel Niblock were due to be on stage and chat about the value of Dementia Diaries. However, another woman with dementia came to the event from Derby. When Rachel asked if she wanted to join in the chat on stage with us, she panicked and was saying:
“Oh no, I can’t stand up and talk in front of an audience”.
We assured her there was no standing as we’d be sat together and I said that if nothing came to our mind, we’d simply look at Rachel and she would come to our rescue.
As it turned out the woman had lots to say because there was no expectation and no pressure.

So often it’s a case of teaming someone up with a buddy to make them feel not alone and to see it as fun. Or including many people on stage to make it less scary.

That’s why I also encourage people with dementia to join twitter. It allows them to speak out silently. They don’t have to say the words, they can type them at their own speed. It’s given many the confidence to then speak out more.

No two people without dementia are the same, just the same as no two people with dementia are the same.

Yes I enjoy speaking at events and conferences. I’ve said on many occasions how all that stuff is my suduko. My way of keeping my brain engaged in different conversations and environments. Sometimes 1 speaker is all that’s required.

But If events and conferences want to hear from a different selection of people then they need to think differently about how to include and encourage…….it’s not difficult. Some things just take a bit more thinking and planning……

Why do we let people down at the end if life?….

Yesterday we heard in the news of giving the last Northern White Rhino, Sudan a dignified death, because he no longer had any quality of life. “Sudan was put down by veterinarians at the Ol Pejeta Conservancy.”
He was the last male Northern White Rhino, yet his protectors decided this was no reason to keep him alive when he was in pain.
“He was put to sleep on Monday after age-related complications worsened significantly.”

Of course the keepers were devastated and very sad…..just as we are when a loved one dies……

So why oh why do we still allow humans to have an undignified death?

Yes, I know, it’s a contentious issue, but one which needs to be out in the open. TALKED about….
Do we strive to keep loved ones alive for selfish reasons? Because we can’t face life without them? Who benefits from life being extended? If someone has a life limiting condition, has lived a normal life in the past and then decides they’ve had enough of outmaneuvering the condition, why shouldn’t they be given the option to die? If someone is in a coma or clinically brain dead and previous wishes have stated they would prefer the machines to switched off, then why not?

Yes, of course there are many discussions to be had about capacity and ethics and wishes and all the rest but at least let us get the conversation going. Difficult decisions are never easy, but to pretend they don’t exist until the event itself arises just hides what we should be talking about now.

The same situation arises for me, when hearing about loved ones denying organs being used for transplant and overruling the wishes of their loved ones…….why is someone allowed to overrule the wishes of the deceased, simply because they have died and they don’t want their organs used in this way?

Yes, I’m talking about dementia but it could be anything. I don’t want to go over the edge into someone I no longer recognise, I don’t want my daughters to experience that. Yes, I’ve got all the Do Not resuscitate in place but often, our organs far out live our brains deterioration. My organs may keep me alive for years to come but I wouldn’t want to live with a brain that was continually declining.

Why has Dignitas been around since 1998 in Switzerland and yet here we continually strive to ‘keep people alive’? I know clinicians find this a hard concept as it goes against all their training. There are others who believe it’s not for us to choose. Some for religious reasons, others by pure choice. But that’s their belief and their choice. My choice is to decide when I’ve had enough.

We always say we treat animals better at the end of life than humans and it’s very sad to think this is still the case.

Yes, I know many people will be horrified at the subject but as we’re always saying, not having difficult conversations never made the subject magically disappear…..

For me and in my humble opinion a good death should be about choice. Choice where we are in our final days or hours, Choice who we are with, Choice over when we die when faced with a life limiting condition or in certain situations where life is untenable, Choice whether we’re buried or cremated.

I’m sure this will upset many people, and I’m sure many people will disagree with me, but that’s what discussions are all about. All I want is for the conversation to begin and continue, as one thing is sure in life, that we will die, so why is it such a taboo subject?

Not only time to think but time to TALK….

Double act with my daughter Gemma to the U3A…….

So yesterday I was on home turf with Gemma as we were doing a double act at the local U3A meeting. It had been planned for ages and I was to talk about the usual stuff and Gemma would talk about research in Humber NHS Foundation Trust, for whom I’m their Patient Research ambassador.

U3A, stands for University of the Third Age but has nothing to do with UNiversity……their vision is to:

“make lifelong learning, through the experience of U3A, a reality for all third agers.”

We didn’t get home from the theatre until after 11 the night before so I was so glad we weren’t due there until 1.30……….

At least it was dry today so the walk from the car park meant we didn’t arrive bedraggled as we were carrying Join Dementia Research leaflets and a banner etc………..🙄

We were met by one of the committee who immediately sorted us a cuppa tea😇 while everyone began to arrive. She told us not to expect many as it was half term and numbers were always down then…….however…….the room was just about full by the time everyone had settled and there must have been about 100 people👍

We were introduced as me and ‘Gemma, my daughter, who was just tagging along’ as we thought that might immediately bring a smile to their faces………..and it did……..
I started off with all my usual stuff first including adapting, moving , talking etc and hopefully threw in some humour every now and then.

Gemma then took over and talked about the research taking place in our local area and dispelled a few myths. I know I’m biassed, but she was brilliant……….

I finished off talking about the Advantages of having dementia 🙄 and about my book. They were generous in their applause and we had a queue of people coming up to both of us afterwards. Many people took JDR leaflets and they even offered to put them out again at the next meeting. They said some really kind things and it became apparent that many of them had twigged I’d been on TV and radio recently but just hadn’t realised it was me coming to talk – phew! – they might have been fed up of hearing me and not turned up if they had😳

The people afterwards came with many questions and stories, mainly of friends being in denial, which was sad, but also of queries re adapting and coping. The main consistent thing that came out was that people often talk to others, to friends, to strangers but rarely to each other…..seems like we need to normalise Talking –  hopefully they found my talk useful.

Afterwards Gemma had to take me to the station as I was heading for London as, on Friday, we were due to be live on the BBCs Victoria Derbyshire, but instead, due to another story they’ve been following, we’re going to record our programme to be showed at a later date. Normality quickly resumed as my first train was ‘delayed’ and then ‘cancelled’…….🙄🤦‍♀️🤐…..

Talking to my favourite people – Students……

Following on from yesterdays blog about my travelling escapades to Norwich, todays is all about the event itself.

Bryony Porter from the School of Health Sciences at Norwich University and having just started her 3rd year of her PhD, asked me way back in May if I fancied a trek to Norwich in order to speak to PhD students. I heard the word ‘students’ and ignored the word ‘trek’………and so I found myself waking up to a lovely sunny day in a hotel in the middle of Norwich.

I was told the audience would be a mix of students, researchers, academics and interested members of the public. They’d asked if give a I would give a talk as part of a Health Sciences Seminar. When I hear the word ‘students’ I envisage a better future. They can have so much impact on change, perceptions and treatment of people with dementia.

Bryony had sent me a detailed itinerary of timings of taxis, meeting places and even including ‘times for cups of tea’, so an immediate brownie point allocated😇🏅The seminar was also due to be recorded.

The taxi arrived outside the hotel and took me to the Edith Cavell building at the University which also happens to be opposite the Norfolk and Norwich hospital.

I was met by a smiley faced Bryony and we went upstairs to also meet an equally friendly Fiona Poland who organises the series of seminars and Linda Birt who works on the PRIDE study (which I apparently am involved in🙄)

Fiona had brought some lovely things for lunch but all I was interested in was my cuppa teas. All very civilised and very happy chit chat before we made our way down to the lecture theatre.

Once there the IT man who would be recording it, had to have an extra role of chief photographer and took a piccie of the 4 of us before people started to arrive😊

People started to file in and it became obvious that there was a mixed bag of people. There were some nurses from across the road at the hospital, researchers, a patient research ambassador and goodness knows what other professions. Always nice to have a mix.

Bryony introduced me with very nice words and the fact that this was the first seminar of the new academic year.

I spoke for about an hour about anything and everything and my passion for research. About how anyone with any difficult diagnosis should try to see the positives, after all why dwell on something over which you have no control. I also spoke of the importance of being encouraged to concentrate on what we can do rather than what we can’t. I use to run but why dwell on the fact that I can’t anymore, instead I enjoy walking.
How research, my new found passion, enables me to be involved in so many different ways and how researchers can make it more accessible and the magic of Twitter…..
I ended by talking about all the opportunities that would never have come my way if it hadn’t have been for a diagnosis of dementia…..a sobering thought for people to adapt to whatever life throws at them.

“All this goes to show that a diagnosis of dementia needn’t mean the end – it can be the start of a different life but we have to have positive support from all those around us.”

We then we had some very interesting questions, none of which I can remember as I wasn’t typing…..but I remember thinking they were different.

I never quite know how things have gone but people were very kind in their applause and thank you’s afterwards.

Once everyone had gone Bryony and Fiona took me back upstairs for a much needed cuppa tea and in the blink of an eye it was time to go as my taxi had arrived to take me back to the station.

A very different event but I had a lovely time and well worth the trauma of the long journey – thank you to Bryony for asking me and being the perfect host and for all those who came to hear me speak – hopefully a few more seeds were sown…….

I came across this nice sight to end my visit, at Norwich station when I got there….


Importance of paying expenses……

It never ceases to amaze me how some organisers find it acceptable not to pay all our expenses………

Some are totally wonderful. Not only do they support us in every way possible, by asking what help we need, but they detail what will be paid for and ask if anything else is needed. Some offer to collect and drop back home if local. Some even pay expenses on the day!

However, there are those with little understanding of what attending an event can entail. That makes me feel like a tick box and used…….😔

Many people with dementia and supporters are more than happy to speak at events, to staff, to organisations, etc, etc……but if our expenses are not in the budget please don’t ask us.

Many people with dementia and supporters are not in work and even if they are, surely it’s only courteous and expected that if you ask someone to take the trouble to attend and speak, then you ensure they’re not out of pocket?

Travel tickets are one expense but so also are taxis if needed and we still have to eat if it’s an overnight or if it takes a whole day with travelling. Many offer to meet us at the station, or suggest we get a taxi or provide a good walking map.

It’s embarrasing enough having to ask someone to book train tickets, so please don’t embarrass me further by making me feel bad about asking for my taxi fare to be refunded or anything else I reasonably claim. And after the event please don’t tell me taxi fares aren’t’ covered as how else am I suppose to get from my house to the station when public transport doesn’t exist?

I put lots of planning and preparation into any event I’m asked to speak at so please return the favour.

I rely on the integrity of others to repay any expenses claimed and havn’t a clue whether they are or not they are as once I’ve submitted I simply forget so if you’ve been my contact person it would be really useful to track whether I have actually been repaid, and some do this as a matter of course, which is wonderful.

I’m more than happy to attend and speak, but please don’t let me be out of pocket.

There’s a guide on the DEEP web site for including people with dementia in the second list “Involving people with dementia at conferences and events”…..the last paragraph is equally as important as the first and everything in between.

Sorry couldn’t make it appear as a link to the guide itself……end of rant….


Talking to a different audience……U3A

I usually leave weekends free for ‘me’ but a year ago I was asked if I would speak in York at the Saturday U3A meeting. U3A stands for University of the third age, has nothing to do with a university, and is simply a great organisations that has groups all over the country.
A quote from its website describes it as:

“Retired and semi-retired people come together and learn together, not for qualifications but for its own reward: the sheer joy of discovery!”

The organiser had told me that the meeting would consist of about 150 people in their 50’s-80’s. I’ve always found this older age group a challenge as they already have much experience of dementia and have a fixed vision but hoped that this group would be more open to new ideas…….I wasn’t disappointed….
Interestingly, they’d asked for a talk on Dementia, but when I sent the subject of my talk I was told that they’d hoped for a slightly different angle but was confident that my talk would address all their concerns and hopefully give them more of an insight.

So last Saturday I happily trundled off to York and was even happier when Sarah said she could give me a lift to prevent a mega early start.

York looked as wonderful as ever


We arrived in time for a cuppa tea……naturally…….and I then made my way to the venue, where I was met by Peter, who also offered me a cuppa tea – double bonus start to the day!😊

Peter showed me into the hall and I was met by about 100 people already seated and we weren’t due to begin for 20 minutes….the slide of me and my daughters was already in place so at least people would have something to look at apart from me🙄

As 10.30 approached, even more people piled in and I had the wonderful sight of a room chocca block.

I’d been given 45 minutes so I decided to intersperse this talk with practical help and adaptions, with funny stories and local factual information – because the talk was in York, I had lots of local examples, which made it easier. They were clearly interested in the small but affective adaptions I’d made to my home and life in general.
I also spoke about Join Dementia Research and the opportunity it gave them to be involved and several took leaflets afterwards, which was a bonus.

The audience was far more receptive than I ever imagined and sat silent and attentive yet laughed in all the right places, which is always a good sign.

At the end, I always willingly answer any questions and was met with hands up all over the place – in fact I couldn’t answer them all as the time was up all too quickly and the hall was needed – but people happily queued afterwards to talk to me and ask questions afterwards, which was wonderful. People even stopped me in the street as I passed an hour meandering around while I waited for Sarah🙄

I think I can safely say that I’ve never been asked so many questions and the organisers even asked if they could make photocopies of my talk there and then as people were asking for copies. In the evening I received an email asking if they could have an electronic copy, such was the impact I’d made, that they wanted to make it available on their local web site……..

It just goes to show how we’re not reaching the people affected most……I’d rather give a talk to an audience such as this than many of the conferences I’ve spoken at……..

Well, after such a response I’m glad I gave up my Saturday……and it was no great ordeal going to York…….

More can be found about the U3A on its general website

The Museum Gardens looked wonderful.....
The Museum Gardens looked wonderful…..

Young Onset Conference…..Part 3

And so to the final blog on the conference……….

So before lunch it was my turn ….

Always have my daughters with me on the slide behind me....
I always have my daughters with me on the slide behind me….

…..I spoke about employment and what works and what doesn’t. I ended my ramblings by saying:

“Not to have a choice shouldn’t be an option – we have rights as much as anyone else. I’m a great believer that everyone has a talent – when we’re given a diagnosis we simply have to learn to adjust those talents and even seek new ones – employers need to seek out and support us to continue to use our talents”

Then Sue and Jannine were after me – I worked with them on their project.
They said it soon became apparent that very little is known about people with dementia in the workplace. They grounded their study around speaking to me, line managers, other staff, HR OH, train unions.

They weren’t able to speak to an existing employee living with dementia for a variety of reasons.
The picture painted isn’t a good one, but they did come across some good practice. Nice to see them again and hear how it had all gone and their plans for the future….

Libby Brown – an occupational therapist from Havering Memory service finished off our session. She focused on Bett and Tony’s story, who were in the audience.Bett has dementia and is still working.
She then played a short video where Bett spoke of why she liked to work. And the the role the healthcare professionals – namely Libby – played, providing advice and advocacy. They informed her employer about the Equality Act of 2010 on Betts behalf.
They helped Bett to come up coping strategies at work.
This talk demonstrates the post code lottery of support available…………the support Bett received enabled her to gain her confidence again and simple strategies means she’s still in her post.

Again, the continuing theme of specialist knowledge needed by professionals……….changing mindsets inside and outside the workplace is the hardest challenge…..

We had a nice lunch while the last session was going on while it was quiet. After I’d had a cuppa I finally found Pat and Mel! And we put the world to rights with a cuddle and a few photos of Neville the cat😻

The afternoon session was a workshop for people living with dementia and was being filmed.
Initially we had one huge circle
However, Rachel redesigned us so we had an inner and outer circle – inner for people with dementia and outer for the supporters. I was so pleased to see so many people with dementia there….

We talked about the things we like to do but need support to be able to continue

One chap spoke of a dog he looks after at the weekend – the dog is part of his care package now as it’s enhanced his life! Bit like Billy the cat!

We talked about the value of social media in keeping us connected and feeling less isolated – I live alone and social media helps stop me feeling lonely because I know there’s always someone out there.

There’s a tendency to think that ‘it’s only happening to me’ – whereas here we are in a room hearing similar stories from everyone………
The best thing about this 45 minute session, so perfectly run by Rachel Niblock, was that everyone spoke – even people who hadn’t spoken before, which was sheer magic to hear. One lady who hadn’t spoken before in public simply said:

“Support is life giving”

Sums it all up perfectly really…….

A great conference ended with the long journey home but it had been worth the trip just to see so many old and new friends who are also living with dementia…..and the wonderful Botanical Gardens….

Read more about our new Network at: