Category Archives: Experiences

First blog of 2020……

I’m here sat with Billy typing away. It feels so calm in his presence after what’s been a roller coaster break. I adore the run up to Christmas and Christmas Day itself but then my mood drops as the quiet begins and festive decorations look out of place, lonely and the magic of anticipation having left them….

I trundled in the dark early morning, thinking he’d want to go out but Billy thought it was more snug inside sat in his Christmas box…

The village feels so safe even in the early morning. I have my light on my stick shining a path through the darkness

Even a shadow appearing at the side of me didn’t spook me as I heard the panting of the faithful dog taking its owner for a walk…

This time of year is my least favourite and double edged. The joy and expectancy of Christmas followed by an uneasy lull, with decorations and lights suddenly looking out of place and wrong. The confusion everyone experiences of not quite knowing what day of the week it is – welcome to our world…….is more intense…

My girls often use to go to their dads Boxing Day, so that’s when my decorations always came down, Christmas over, so I suppose that feelings lingers on now. My heart use to break as they left and silence filled the house. But since dementia it’s become a different uneasiness, a sadness like no other.

I set out with all good intentions of ‘doing’ , of not letting it lull me into closing my eyes, but it never works and didn’t this time. That inability to help your daughters with the support they need and feeling that sometimes the support is one way and not the way I want it to be…

I’ve said this often before, that ‘doing’ is my way of keeping dementia at bay. I’m a great believer in keeping my brain active through all the events, talks and research participation. All of us who remain involved remain capable for longer. As soon as people stop doing those things and stretching themselves they decline far quicker. Dementia seeping in and clouding you’re thoughts.

With dementia, if you’re encouraged ‘to do’ that ‘doing’ helps fight dementia for that day. I’m not saying it’s easy and the Christmas break is a classic example for me.

There’s nothing more comforting with dementia than sitting with your eyes closed but that’s dementia lulling you into that false sense of comfort. But when I just sit, and close my eyes, within no time at all I can feel dementia seeping into my brain. I always say I’d rather die of exhaustion than dementia and it always makes me sad to see people just sitting for any length of time. But over the last 2 weeks I’ve found great comfort in doing just that, snug with my eyes closed. I’ve forced myself to go out for a trundle each day just because, otherwise I’d just close my eyes listening to the silence  as it’s soooo nice.

I don’t blog as I’ve nothing to say. It would probably be sad blogs after Christmas and don’t want to bring everyone else down. No talks to type so instead poetry from my trundles have kept me typing. I really need a dictaphone or something as the poems pop into my head as I’m trundling along and when I get home and try and type them they come out all different as the moment has gone….but at least they’ve kept me typing and I’ve had some lovely trundles…..

I’m afraid Twitterworld has had to put up with me posting them on there..another world that goes quieter over the holidays….but Twitterpals have kept me company, new and old.

I say ‘no talks’, I did in fact have 2 to write but words wouldn’t come into my head. The fog hiding their existence as the routine of writing them had gone. It’s actually fortunate that it’s a slow start as I couldn’t cope going from zero to busy.
Over Christmas I could feel my brain becoming more and more gluey as dementia rubbed its hands in glee at my idleness.  I find it hard to motivate myself as doing nothing becomes the norm and is wonderful. I tried drawing again but that was a disaster with shapes, once easy, were now difficult to master, so that idea was binned. Instead the faithful scrabble and solitaire repeatedly done over and over without becoming bored took its place along with the peace of closing my eyes….enjoying closing my eyes far too much without the benefit of a gratifying slumber…

Am I feeling sorry for myself? Probably….but now I need consistency and routine 365 days a year and the Christmas break just erases that and unsettles me……don’t get me wrong, I had the most magical Christmas; enjoying Stuart’s vegan delights, the company of Sarah, Gemma, Stuart, and of course Billy, going for walks, watching films but how I long to see a full calendar again….then I can worry about being too busy…..🙄……and today I have my first talk to give so hopefully tomorrow’s blog will be more upbeat…..

And Billy is there for me if I need reminding to enjoy the moment…..



An unusual, but amazing location for a TV interview……

Yesterday I headed to London ….I’d been emailed a while ago by Sky 1 ‘What’s Up TV’ asking if I would be part of a programme for them……In their blurb it says~:

It’s  a broadcast magazine show which focuses on providing engaging and inspiring content for a 16 – 35 year-old audience. The programme, now in production of its 17th series, reaches over 100,000 households, making it one of Sky One’s most popular shows. We have covered topics such as; SUDEP (Sudden unexpected death in epilepsy),  Myalgic Encephalomyelitis (ME), Domestic Abuse and many more.”

So it sounded like a good content programme and the emails I got were also kind and reassuring.

The aim of the piece they wanted me to do was to raise awareness of dementia, highlight the lack of funding for dementia as well as lack of understanding……

For those of you that have been hibernating for the last week or so, there has been severe flooding all around the Doncaster area and there have been no Northern trains running from my area to Doncaster since last Friday, I think… I was getting a tad worried about my plans…..I needed to get to Doncaster to catch the London train so I needed a plan B……and a plan C for getting back home…..🙈

I spent Saturday trying to work out what to do but gave up as the situation seemed to change by the minute so left it until Sunday morning to decide…..and thought and thought…..took me forever…..the web sites were no help as some trains said they were running on one site and not on another…..

The reason I decided to put myself through this was the venue they chose to record it in……The Clock Tower room at St Pancras……

The number of times I’ve looked up there to get the time while being in London, not realising it had hidden secrets and now I would be inside it. So I couldn’t resist the inevitable stress I would go through just to get there……..

Next time if you come out of Kings Cross, look up towards the right and that’s the Clock Tower above St Pancras …

Anyway… plan b was to set off 2 hours before I needed just to try and get to Doncaster for my connection…..when I got to Hull the boards were full of ‘Cancelled’ heading towards Doncaster, but the only direct LNER train to London was sitting in the station. It was the 7am and I hadn’t even been due to arrive into Hull until 8.45 🤐………but the thought ran through my head that if you don’t ask you don’t get…….

I walked up to the guard, and he immediately clocked my lanyard….I’d also put a card in my lanyard. I don’t usually do this,

but thought today I would as  I knew I’d be doubly stressed about travelling and  it might just speed up being helped…..and it worked…..he immediately said:

Come and sit down so we can chat, we’re not due out for ages’

And so we did. I told him my predicament. How I did have a ticket booked from Doncaster but not until 10.18 but wasn’t sure how I would get to Doncaster…….

He immediately found me an unreserved seat, and then said, “just travel with us to London, then you won’t have to worry about Doncaster”

That small act of kindness that cost nothing, meant a stressful worrying start turned into a calm relaxed journey. Yes I did get there 2 hours before I was suppose to but so what…….

The start of the journey was in darkness but as soon as the world began to wake I could see the devastation of the floods in the fields on farm land…..goodness knows how households are coping…😔as we pulled into Doncaster the once clear landscape was heavily flooded……

As we trundled further south the landscape began to change to green and brown  again…and autumn colours highlighted the landscape instead of a watery deluge….

The train manager came and checked on me every now and then to make sure I was ok, and asked if I needed to phone anyone since I’d be so early. I said I was happy watching the world go by for the couple of hours but he insisted I wait for him to come and get me, he’d walk me to the LNER lounge where I could wait in the warm with tea on tap….again, such a simple act of kindness and compassion for a fellow human being….he didn’t have to do that but he did…….I tweeted LNER to tell them so……

Katie Moore, researcher for the programme, had agreed to meet me at Kings Cross and walk me over to the venue. We’d exchanged phone numbers for txting, so I txt her the change of plans…I’d also had to book a different ticket home so I wouldn’t have the same problem in reverse, but they’d said they were fine with that and just to go ahead…..they’d refund me both…

The train manager kept his word, unlike Assistance, which forgot me, so I’m reluctant to use them again …..and he took me upstairs to the lounge area where it was nice and snug and tea on tap as promised…..👍makes travelling alone possible and manageable if people along the trundle are kind…..

Katie txt to say she’d arrived a tad early for me and we walked over to the clock tower

and here was  the amazing view from our floor looking down to the ground floor…..

And here was the view of Kings Cross from the window of the room…..only a few minutes before, I’d been stood on the outside looking up…

Katie told me how they weren’t being charged for the venue but instead the company would donate to charity and the location manager, Peter, would also donate……how kind is that…❤️ as I imagine that venue could charge a huge fee……also on the way up in the lift she told me how some of  Harry Potter was filmed here 😳❤️❤️❤️ The location was truly magical and I could well see the appeal for film companies…

I met all the crew who were just setting up and sorting out all their stuff….

Nayha, the interviewer arrived……and we chatted happily about the questions and just got to know one another….the term ‘sufferer’ was used by both Katie and Nayha, so I told them why I prefer ‘Living with’……..we had lots of laughter about Katie’s  Liverpudlian accent, and how she must never lose it…….and then the  director sat quietly and asked me questions simply to help in his personal life……

Nayha asked me 5 questions that turned into 6 after speaking about the word ‘suffferer’  …..around the NHS, symptoms, positive outlook and advice to people living with dementia and those supporting,  what the government can do with regards to care costs, adapting my house, why I don’t like the word ‘sufferer’ in everyday life…..

We recorded the questions and answers twice and I did warn them that I might say something different 😂🤣

For the question that asked, ‘what should the government do ….’ I answered….

Treat those of us with dementia on equal terms as those with other conditions such as Cancer . If you’re diagnosed with cancer you have NHS support until death, whereas people with dementia have to fund their own care costs….”

Once finished and while I typed away, they recorded the ‘nodding’ shots, the background shots of Nayha…….soooo funny…..asking the questions without me there…

I climbed the stairs up towards the clock, with everyone but me freaking out at me climbing so high 🤣 and took this piccie of the crew, me thinks they were more worried about me than I was until I told how I’d done a skydive earlier in the year 😂🙄

Katie then climbed the stairs………

but hadn’t realise until then that she was afraid of heights and had to be rescued…..bless 😂🤣 …..and someone else took the piccie…..

They were such a lovely crew…….so friendly, so kind, so willing to listen and ask questions…and it all worked because Katie did such a wonderful job of getting to know me via email first and sorted out everything I needed so perfectly…….just how it should be……

It will aired in February sometime and the programme goes out at 11.30 am on a Saturday and this piece will also include a Labour and Conservative MP,   2 sisters who lost their dad, Dr Selina Wray from UCL, …….they will also put a link on YouTube so I’ll share it when I’ve seen it……..

Katie described it as a ‘Celebration of identity’…….even though you’re living with dementia you are still a person with a life to be lived……………wonderful…..fab day with fab people in a fab venue …….and because they allowed me to book another ticket home, which was a direct train, it was also a stress free journey home…….

Podcast and Article Link…..

A simple blog today after a mega busy week last week…..I found it lurking in my draft blogs so not sure if I’ve shared it or not so apologies if I have, just delete!..

The first is a link to an article I recently wrote about the parallel lives people with dementia and our supporters lead……in some areas now, it’s said that people with dementia’s voice has become too loud and carers are now forgotten……well what rubbish, one can’t exist without the other and surely those of us who speak out can help those who support to understand ? Both are equally important, just have very different needs. For many years it was only carers voices that were heard and now we’re simply addressing the imbalance me thinks…..

Anyway the link is below

And next I was interviewed by  Sue Learner and Jill Rennie for the ‘Let’s Talk about Care podcast, while I was at Cheltenham book festival.

I loved hearing the background of the Writers room in the background…..I spoke for 45 mins about the fog, speaking to those I’ve never spoken to before, ‘challenging behaviour’, value of pets, fake displays in care home, euthanasia, Twitter and much much more.

My ability to type sometimes works against me….

Being able to type and write often works against me as it gives people a warped perception of my life…..It seems to make them forget the struggles I have but I’ll keep writing for as long as I can and nice to be asked to write for the Observer for World Alzheimers month…..I can’t help being a glass half full person but often face criticism for it….but their problem not mine…it doesn’t stop it wearing me down though especially if I’m not having a good day.

Maybe in it’s own way, this is a gift from dementia…to enable me to communicate in a way I never could, solely through word of mouth…as I’ve said before, I’m often mesmerised by my fingers typing and astounded at the sentences they produce.

But the inevitable criticism this brings is so hurtful……why can’t people be pleased for fellow human beings who have found a way to outwit the challenges of life and in particular, in my case, dementia? I find criticism and doubt very strange. But that’s the human race for you……

Simply because we CAN creates criticism, doubt and questioning…..if we focused on the CAN’T then we’d be fitting with the sterotypical image and the critics would be happier……🙄 I could write a a long list of what I can’t do but why should I? It would depress me to be constantly reminded of the losses. If professionals concentrated on the ‘CAN’ from the start, our lives would be so much more hopeful from point of being diagnosis.

Professionals often see people in the later stages and so find it difficult to understand people in the early stages. Many misjudge us through lack of knowledge. Families often focus on the late stages, which undoubtedly are difficult, but forget their loved one would have had an early and mid stage. They may not have registered or got a diagnosis until the late stages so find it difficult to understand how I can manage to function…..

Anyway, for those that havn’t seen it and maybe interested, here’s the article I wrote for them…


Second Audiology appointment for Hyperacusis……..WOW!

A while ago I finally got an appointment with the Audiology department to discover whether I had Hyperacusis. It turned out that yes, they diagnosed hyperacusis in both ears but I’d been referred to the wrong department. 🙄 ..So I was put on another waiting list for the right department to see if they could help me…..🙈 Well yesterday was that appointment. Luckily I didn’t have to wait another year!

You can see what happened at the last one here if it helps:

Not sure how much you know about dementia but one of my first senses to be affected was my hearing. I’m not going deaf, it’s just that certain tones of noise physically hurt my ears.
Now audiologists are recognising it’s affecting many people with dementia and diagnosing them with hyperacusis and I suppose I’m here today to find out what help they can offer me.

I was due to travel to Newcastle in the morning ready for a meet up with playmates at another DEEP group for their 10th birthday and their even bigger event on Thursday. But my calendar is chock a for the next few months and I knew it would be hard to rearrange. So I had to dip out of the festivities this afternoon and travel to Newcastle after my appointment ready for the big event on Thursday……

Seem to be in waffle mode today….😂…..anyway back to the appoinment…..because I was getting a taxi at lunchtime I had a different cab driver. We chatted amiably on the way there. She has cancer and also has an interesting story as a cab driver trying to keep her head above water. I’m always saying, everyone has a story………

This appointment was at my local Community Hospital, so again, I didn’t have to go to the dreaded Hull Royal. It’s a light airy waiting area

I just had to hope everything went smoothly to catch my train …..I was the first appointment of the afternoon……so no reason why it shouldn’t be……….🙄

The audiologist came and called me. I instantly liked her for her smiley face and calmness. It was then we began the most AMAZING 2 hour consultation.

Yes, I did say 2 hours……she doesn’t believe in 8 short quick appointments so she has 2 hour appointments to get the patient sorted out in 1 go……..instant triple brownie points…….she couldn’t understand why I wasn’t referred to her in the beginning…….

We immediately clicked because I didn’t just want her to solve the problem and send me on my way, I wanted to understand what was happening, I wanted her to explain so, like a child, kept saying ‘Why?’…..which she liked.

She showed me the pictures of my right and left ear and explained what it meant.

The line is suppose to be straight……🙄

Obviously I wasn’t typing as I needed to listen so am typing this as soon as I’ve left starting in the taxi. I continued on my journey and I had the normal sleep, wake, sleep wake later that night, but little images kept coming through from the audiology appointment so I kept adding to this blog, trying to convert the images into words to capture as much as I could and this is the result ……..

She then went through a series of tests with the hearing aids, explaining everything patiently and even drawing me pictures to take home. She explained the problem on a diagram, explaining how there’s a gate between the ears and the brain and my gate is permanently open. When those without hyperacusis hear loud noise, it’s simply a loud noise, when I hear the same loud noise it’s as though a raging bull is crashing through my head. Their ‘gate’ closes, mine doesn’t.

She explained why ear plugs don’t work effectively – because they don’t ‘close the gate’.

Because I’d already had the hearing tests she didn’t need to do them but instead of just showing me the door, she spent the rest of our time asking about dementia and seemed genuinely interested in hearing the answers. She admitted not understanding the connection with dementia, but wanted to know more. Her daughter is autistic and people with dementia have so much in common with those with autism, including hyperacusis …….

The 2 hours flew by. She wrote me post it notes to help remember different things. Stuck a sticky label on on each box to say which to use and which to save. We decided I’d just wear the right one for now to see how I go as the left one was causing more disturbance. At one point she asked me to close my eyes and point to where her clicking finger noise was coming from – I pointed one direction and I was a few inches out – can’t remember the detail but it made total sense.

One tiny aid that could change my world……fingers crossed….might not be for everyone but for me at the moment it’s WOW…..

She could see I had a jaw problem, which I wrote about some time ago and said how that could well be causing the issue with wearing the left one because of one side being more dominant than the other. She adjusted, tested, readjusted.

It’s not that the loud noise is reduced – it’s still just as noisy, it’s just the intensity of the tone that is dulled which takes away the pain ……

I was amazed when she said, that I’ve probably not heard ‘S’ and T’ in words. Which explains why I can’t follow conversations sometimes. But with the hearing guard set correctly, it made her voice subtly different. I didn’t know what the difference was until she said that. It’s like when the optician puts a better lens in front of your eye and the letters are sharper – her voice was subtly clearer. Apparently not everyone picks up the subtle changes so think there’s no difference so no point in wearing them. But my senses are now so heightened so much, that maybe that’s why I did. AND maybe not every professionals takes the TIME to explain what will change in such a clever way as she did……

What I’ve typed probably sounds a muddle and I wish I could have recorded the whole interview to transcribe as everything made sense at the time. We swapped coping strategies for sensory overload, which would come in handy for her daughter. We spoke of the NHS and generally put the world to rights

She then got her 2nd bucket load of brownie points by saying how if I had any questions at any point then here was her email……😳🤩🤩🤩🤩🤩🤩🤩🤩⭐️⭐️⭐️⭐️⭐️👍👍👍👍👍

We finally finished with a few minutes to spears before my taxi and I thought she would say goodbye at her door, but no…….she walked me through the maize of corridors to the front door and made sure I got to my taxi…….❤️

Maybe I’ll wake up and all this will have been a dream, but if not, in that 2 hours, my faith in the NHS was certainly restored by a professional who knew her stuff but was also willing to listen and learn.

While it takes time to get use to hearing aids for anyone, I wore it straight away and whether it was psychological or not, I didn’t flinch when the train pulled in and the brakes squeaked…….now I just need a siren to test it fully………….I’ve already learnt that it’s a good job I have short hair over my ears!

One happy bunny……..and my mood was as bright as the rays beating down as the Humber as I trundled past on the train to Newcastle……

My hospital appointment finally arrived……

Yesterday, after a year on the waiting list, I finally had an appointment with the audiology department to test my hearing for sensitivity.

My GP knows my dislike of Hull Royal so had sorted an appointment for me at Castle Hill hospital closer by…..😊

My weather app said it wasn’t raining but I opened the curtains to grey gloomy rainy clouds 🙄….the weather man on the telly also told me it was raining…..🤪…….it really was……

Anyway Sarah was taking me and we trundled our way in the rain, parked the car, then proceeded to trundle through the maze of buildings until we found the right entrance… 😇

My first appointment for the hearing test was 09.20 followed by the Doctors appointment at 09.50. However, they were already running 40 minutes late so we settled down in our seats to wait. It was a nice bright airy waiting room with lovely artwork on the wall. I particularly liked the one we were sat by

We’d watched the people shouting names and there was a particularly unsmiley chappie and I told Sarah to come in with me if I had him……..Eventually my name was called, but it was a smiley face that spoke my name for the hearing test so I went in alone for that bit as I had in my head that it would be a tiny cubicle……it wasn’t, it was a large room, so Sarah could have come 🙈🙄

He started asking me loads of questions, which suddenly emptied my mind but luckily I’d taken my iPad with me and on it I’d written my words. So I simply read them out:

Not sure how much you know about dementia but one of my first senses to be affected was my hearing. I’m not going deaf, it’s just that certain tones of noise physically hurt my ears.
Now audiologists are recognising it’s affecting people with dementia and diagnosing them with hyperacusis and I suppose I’m here today to see if that’s what’s affecting mine.”

He was very open to listening and admitted he didn’t know anything about dementia and hearing……well at least he admitted it……

He did tests first on one ear and then on the other…..

Turns out I’m not hearing high pitches (normal with ageing) but the point at which it’s uncomcomfortable is very quick. With low levels I have a larger range but the range is still a lot smaller than normal before it starts to become uncomfortable.
He spoke about the existence of Digital hearing aids which can be set to block out certain frequencies but the doctor would discuss that with me.

He was a lovely chappie, smiley, friendly and willing to listen…….

So far so good………it was at this point that the system went slightly array…………

A doctor called me in…….asked questions…..and I read him the same blurb from my iPad…..he was also nice and smiley…….he eventually confirmed I had hyperacusis…….and then said he’d refer me to audiology for them to decide how to treat it……..well I thought he was audiology but apparently not😳🙈….he was ENT…….

So I have my diagnosis, I have a possible solution….but now have to go on another waiting list to wait for an appointment with the audiology doc…..🙈🙈🙈🙈🙈……hey ho….at least it’s confirmed now. Now I need to find some research to take part in…

For those that aren’t aware:

Hyperacusis is a condition that affects how you perceive sounds. You can experience a heightened sensitivity to particular sounds that are not usually a problem for others. This means loud noises, such as fireworks, and everyday sounds like telephones can feel uncomfortable and sometimes painful.

The main thing is that there’s something they can do……wonder how many other people living with dementia are going through this uncomfortable situation without anyone realising there’s something that can be done….? 😔

Speaking from the Heart event…..

After the wonderfully exciting day on Tuesday, yesterday was an yet another exciting day in London…..I’m so very lucky………a long blog but a lovely one for me to remember…….

Me and Sarah had been invited to take part of an event organised by Innovations in Dementia – Women and Dementia. Many of my female playmates, some along with daughters were invited to be in conversation with Radio 4’s Woman’s Hour presenter Jane Garvey – Speaking from the Heart.

Most people had travelled the day before but me and Sarah had a silly o’clock start on the first train of the day. It meant that Sarah picked me up instead of a taxi! I’ve had a cold for days and keep having to dose myself up to get through the days and today was no different……….

The train was on time and we trundled along, this time taking a piccie of the sky from the opposite side of the carriage….

The event was held at the lovely venue of St Marys House, a nice trundle from Kings Cross. As we got closer to London, the sun started to shine and the gloom of the morning disappeared. We ambled along the main Euston Road, only for me to realise my ear plugs were in my coat, and I’d come coatless today 🙄

Everyone started to arrive and the room started to fill with laughter and pure joy……
Hugs were in abundance, new friends made and old friends reacquainted……..that feeling of instant unconditional friendship hugging the room….

Jane Garvey arrived and more hugs and hellos

And I introduced her to Agnes and everyone who came by. I knew we were going to have a wonderful day today; you could feel the electric atmosphere………

Rachael started off the event……a momentous day as we were all women discussing women’s issues and dementia . We’re hear to speak from the heart…….we had a film maker and the wonderful photographer, Jo Hanley, who took my photo that’s inside the cover of my book.

Philly gave a bit of background…….why are we all here today? She took us back 5 years to the WOW! Festival at York University which recognised how dementia disproportionally affects women. That was the first time I met Agnes and the story is in my book. The following year 2 major reports were published – “Woman and dementia – a marginalised majority” and one by ADI. Both had findings about the high number of woman effected by dementia… with, caring for and working in the care industry.

Not a huge amount has changed since then………

I then read out the piece from my book where I met Agnes for the first time….at the WOW Fwstival…

‘ The next speaker is announced……….It’s Agnes Houston…..By the time she leaves the stage, I’m clapping louder and more furiously than anyone else in the room; she has inspired me’

Frances then read a message from Rachel Niblock who couldn’t be with us….Frances called Rachel ‘Nibbles’ which is lovely…….she (Frances not Rachel!)told us the story of her need to find Tena Ladies in Norway where she spoke no Norwegian and the chemist spoke no English. It was through much delicate gesticulating that she got what she wanted….very funny story but made a point that everything was up for discussion today……

Dory and Agnes spoke of losing their identity when diagnosed. Shelagh said, “I’m bloody sick of dementia”…..the more you campaign, the more it consumes you. Chris spoke of her experience of diagnosis, how she told the consultant there was something wrong inside her head and the consultant said, “I’m here for your physical health, not your mental health’….😢🙈

Whereas Dorothy, from Northern Ireland told of the opposite experience, of how the Consultant spent a long time explaining her diagnosis and took time to explain the scans of her brain. However he did say:

Put your affairs in order” – she replied ‘I’ve never had an affair” 😂🤣

Stresses again the post code lottery that exists………

We then spoke in our groups around tables to find the key topics we’d be discussing with Jane this afternoon. Philly was our tables leader……

We spoke of how being a woman can be exacerbated with dementia in tow. Working in a male dominated area or where managers are male can make it even harder to be respected.

Heather brought up the issue of fear and how the fear is derived from societies attitude to the word dementia immediately meaning the end stages. The media have a responsibility to show all stages…..not just stories of care homes, people getting lost.

My Sarah said, Maybe we, in the future, will have our films shown of us now as well as in later stages.. she also said, women tend to do more ‘shuffling’, more compromising, more negotiating when the family dynamics change ……

Each table then gave feedback from our conversations before lunch…..

After lunch and a stretch of legs we all got back together for the discussion with Jane…

Jane arrived back from shopping from recording her podcast and we started off by me going through the top ideas for discussion. We started off at the bottom with Continence. Various issues were brought up around, losing the signal to go to the loo, closure of public loos, having continence pads that are more feminine as some are enormous; also forgetting to change them. It can make people feel reluctant to go out and are self conscious.

Jane said, the slogan that springs to mind to get the conversation going is:

It could be you”

We spoke of the role of mother being renegotiated. Dementia strips away so much from you but stripping away the role of mother hits hard. I’m lucky in so far as me and my daughters were able to talk about it. Some families fail to talk and suddenly a mum with dementia is stripped of the most precious role because those around her believe she now needs to be cared for.

The subject of not wanting daughters or partners to be a carer was spoken about by many. Even the government wants family to be carers, because it’s cheaper, but as someone said, ‘I want my daughter back’…..

Many people don’t know how to talk, afraid of hurting one another. Maybe professionals could help start those sensitive conversation, but then not all professionals are comfortable doing that.

Jane finished by saying we were the funniest group she’d spoken. It was lovely to have her join us…..the first thing she heard when she arrived in the building was the laughter from our room……the exact opposite of what someone might expect from seeing the title of our day….Women and Dementia

Dorothy recited one of her poems – beautiful…….

We finally spoke of what’s next……a short film and a little longer film will be made from the footage of the day. Much of the stuff could be used for so many things and Jane agreed to be our celebrity superstar ……….wonderful…I was exhausted, my head was banging…but …..oh what a wonderful day.

A group piccie ended the day

……before heading back to Kings Cross to find all trains cancelled north of Peterborough… it was going to be a long evening trundle home……..the not so scenic route…….🙈

A WOW Day at York Festival……..

Yesterday was looking to be another WOW day at York Festival….I was asked to speak in the afternoon and found out I was being introduced by my lovely friend from Radio York, Jonathan Cowap. They’d offered to send a car to pick me up but I just love the bus trundle to York through the Yorkshire Wolds, so took up their offer of a lift home instead as they were due to take us for a bite to eat afterwards and that would save me making anything when I got home 😇

I just havn’t had a clue what to wear this week as the weather has been staggeringly mixed. My heating even surprised me by coming on automatically this morning 😳…….so I went out for the village bus first armed with my raincoat and found it to be gloriously warm🙄……….so that will probably end up being carried all day…….🤐

Anyway, the first bus ride into town was made all the more lovely as the traffic had come to a halt as the town cows had decided they wanted to try the grass at the other side…… our town cows…☺️😍

Then the nice bus trundle into York. I had a load of train tickets to pick up so would be trundling to the last stop…..😍 it’s often misty over the Wolds, still beautiful but on a sunny day like today, you can see for miles. And from the upstairs of a bus, it’s even better….

Anyway, I got to York…..picked up all the train tickets for next week and decided to treat myself with a cuppa Betty’s speciality tea……

I went for Pi Lo Chun Green tea, which was really nice. I wanted to try the Ceylon Blue Sapphire, decorated with blue cornflower petals (just because it sounded pretty)…….but the mention of honey made me think it might taste too sweet for me……..a very civilised way to spend an hour . I’d had a stupid cold all week too so I was able to dose myself up before heading to the venue….

I was met outside the library by Beth who showed me into the room and made me a cuppa weak black tea before the lovely Jonathan arrived…….

Me and Jonathan chatted away as the room filled up……….

It was a sell out and so it began. Jonathan gave me a lovely introduction. We’ve been friends since I was diagnosed and we meet on his morning Radio Programme a couple of times a year.

I chatted as I usually do for about 45 minutes talking about this that and everything. There were tears in the audience but complimented by an equal measure of laughter. I read two pieces. The first set in York, very aptly and ended with the funny Billy story to end on a light note.

At the end, people asked many questions…..can’t remember what but Jonathan had to bring it to a close with hands still raised. Books were on sale from the local book shop at the end and they’d actually not brought enough as some went away empty handed, which was shame. But everyone queued for a hug and a chat whether they’d managed to get one or not. Bloomsbury had even supplied these lovely postcards, which had a question for everyone on the back.

I met a lovely Twitter friend, lovely people and listened to their stories and answered more questions. Two women came up to me to say they were nurses I trained at the hospital in Leeds, which was amazing. Two women came up to me and I knew I knew one……when she spoke, in tears, she said – It’s Alison – I realised it was playmate Alison from Minds and Voices – more tears, more hugs……A couple of people had waited outside as the room was full but had come inside just to say hello and buy my book……

Many special stories were related, but one which made my day was from a couple, the wife having dementia. They both waited until the end to come up to chat.
The husband said they hadn’t dealt well with his wife’s diagnosis and had been in a bad place. Now, armed with my book, they were going home to start living……❤️…what can I say……..makes the sheer exhaustion of these events so worthwhile………

The room now empty, goodbyes said, Beth took me for the promised bite to eat and we chatted happily for a couple of hours before the University driver came to take me home. I chatted happily to him for a while before going all quiet. I apologised, saying I was a bit like a Duracell bunny and my batteries had now run out………

A fabulously emotional day………..

A Day at Hexham Book Festival……..

So last Friday, the end of a week away trundling, I found myself heading for the last event. I was heading from Blackpool to Hexham at the other side of the country. I left a sunny Blackpool first for Preston, where I had to change for Carlisle.

The lovely Jasmin at Bloomsbury always sends me a detailed plan, so I’m always comfortable. However I arrived at a chaotic confused Preston as many trains were delayed 😳. No one seemed to know what was going on and I couldn’t even go and get a calming cuppa due to queues and crowds. So I disappeared into a quiet corner and played solitaire for a few minutes.

Once calmer I then looked around me for a smiley person to help. I showed him my ticket and luckily Jasmin had got me an ‘Anytime’ ticket. So he just told me to hop on the first one that eventually arrived. More knowledgeable smiley people needed at stations!🙄

Needless to say the train was chocca due to all the delays but I knew it would only be for an hour before the next change. I was simply lucky and found a seat that would take me and my large suitcase – all the luggage areas were overflowing too🤯……..

Sheilagh Matheson, who would be interviewing me on stage, had said she would meet me at Hexham station instead of the usual car. Was very tempted to get off at Penrith….my stop for Keswick…….🥰…….but knew it wouldn’t be many weeks before I was in paradise again so faithfully got off at Carlisle and waited for my final train.

I think I made the guards day in Preston. When I showed him my ticket he whooped with delight to see I was going to Hexham😳 …..he didn’t know where it was but knew he’d never seen a Hexham ticket before. Apparently they score an extra point if they see a previously unseen destination…..😳🙄……well I suppose they have to brighten their days somehow……..

I’d never made the journey from west to east from Carlisle before and there was some beautiful scenery despite the grey skies….along with lyrical northern names of previously unknown stations – Haltwhistle, Bardon Mill and Hayden Bridge before Hexham appeared…..

Sheilagh meet me off the train as promised and we drove to the venue in the centre of town where we had time for a much needed cuppa. The organiser, whose name has escaped me joined us and then took us into the dressing room before having a look at the stage and doing a sound test. We sat and chatted for a while before it was time to go on stage. There were more people than they’d expected so we were welcome by about 100 people.

I havn’t a clue what we chatted about but at the end there were lots of questions. There was also much laughter, which is alays a good thing whilst not undermining the daily struggles.Usually if I’m on my own I have my talk to look at to remind me what I said, but when I’m in conversation with someone on stage, it remains a mystery🙄

Someone kindly took a piccie….

At the end people were very kind with their applause and I had a queue of people waiting for me to sign books when I went back into the foyer. There were many lovely people in the queue but one remains in my head, a student nurse – my favourite species……..More questions came with the signing and it was sooo nice to meet everyone. The book stall only had 6 books left once we’d finished so I signed those too.

After goodbyes, Sheilagh took me to my B&B. A lovely old house just on the edge of the town. Once I’d got in and familiarised myself with the room I decided not to take my coat off and instead go for a walk into town before coming back to hibernate for the rest of the evening. It was a lovely town and in the centre I found this not so hidden bluebell gem in the park……

Really looking forward to going home after a verrrry long but lovely week……..

Me and Anna in Conversation……

A simple blog for me to end the week as it’s 2 links – firstly:

It’s the last 2 weeks of voting in the Charity Film Awards. If you’d like to click on the link to see the film of me that has made the final and then vote if you havn’t already, that would be wonderful….

Secondly, to an article me and my partner in writing, Anna Wharton, wrote about the process we used and challenges faced when writing my book together.

The day Anna emailed me was a very lucky day for both if us. Because it was going to be such a personal book for me, there had to be immediate trust. It may sound strange, but the minute I met her I knew it would work…..

But for me, the best part of the whole process was that it was the most wonderful experience and through our writing together gained a friend for life….

Here’s the link to the article….