All posts by wendy7713

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

I met a young woman…..Poem revisited….

I found this poem I published back in May this year, yet needless to say I have no recollection of it……but I like it all the same so hope you don’t mind seeing it again….

 

I met a young woman
Just the other day
She sat down beside me
And we chatted away..

She seemed to know a lot about me
Asked if I’d like a nice cuppa tea
She settled down and told me about her life
So I sat and listened contentedly

It was as though she knew me
In a vague familiar way
She smiled and we compared
The years that had gone by

Of children growing up
We had so much in common
Our love of the outdoors
Our love of sport more than anyone

But as we grew older
That’s where our lives diverged and similarities end
She so private, yet with so much drive
Me so carefree, yet today I’m sat here tired of life

We finished our tea
Said our goodbyes
Wished each other luck
And then we parted

And I sat alone
Gathering my thoughts
Who was that woman…….?

Well………… that woman was me…

You also listen to me read it here on Dementia Diaries….

https://dementiadiaries.org/entry/11518/wendy-reads-a-poem-written-for-dementia-diaries

My last day in paradise…….

Today is Monday and I arrived back home from Keswick on Saturday….another trying journey home, with delays and missed connections……but here’s my last full day in Keswick on a rainy Friday……..

The promised overnight rain had arrived in bucketfuls and promised to hang around for all of my last day. But you expect rain in Keswick, so it wasn’t going to dampen my spirits.

Heavy skies who over Borrowdale in the distance hiding their existence

I got chatting to the man on the next table at breakfast who told me the amazing climbs he’d done the day before above Ullswater and today he was going to rest and amble round town feeding the local economy 😊

I decided I was going going to play ‘pot luck’ with the buses. I headed down to the bus station and was going to catch the first bus that arrived and see where it took me. It happened to be the Penrith bus, a nice trundle, and made all the more interesting by two elderly Americans. They’d started touring the world in January and were due back home in December.  Cumbria had been a true highlight for them and Keswick in particular. When asked what had made them take such a long trip, they simply said, ‘Because there’s so many beautiful places outside America and we wanted to do it now before it’s too late’……wonderful…..

Once at Penrith I then take the next  bus that arrived…..it was for Windermere! So, knowing I could get a bus back from Windermere to Keswick, I decided to take the 2 hour journey through different views – I was not disappointed……..

It’s often the case that if it’s a small bus, then the roads are going to be narrow and steep in places. So we set off expecting a rollercoaster ride into the unknown……

The first village sign I saw was for Eamont bridge….

The narrow roads soon appeared and startled looks on the faces of the drivers of oncoming cars made me chuckle as the space to pass was less than my little finger.

Even though the rain was torrential, the first surprise was seeing the sign for Pooley Bridge pier and expanse of lake Ullswater ahead……always wanted to go there!

I hadn’t realised the size of it as we splashed our way Water Millock

And then onto Glenridding

At Patterdale on the end of the lake it was still murky, still beautiful

Even though we were climbing high we appeated to be in a valley flanked by the mountains either side with a steep gradient for our little bus to climb. Water was gushing down the mountains dramatically filling the streams below. It really wasnt the views i expected in august, as the rain continued to pour.

There was only 3 of us on this trundle and one of them was the driver!

If only id had windscreen wipers in my side of the bus as im afraid youll have to imagine the breathtaking biews

I dont know where we were after this as we diappeared into the depths of isolation with only the odd sheep for company

So steep was it that the bus crawled and we could have walked beside it but thankfully we was nice and snug inside

Thick heavy mist engulfed our surroundings and the driver seem to trundle along on automatic until a soaked climber appeared out of nowhere, hunched up and bedrangled. The driver stopped and asked if he wanted to climb on board. He thankfully accepted and dripped on board with a cheery thankful smile.

I couldnt see a bus stop so think the driver was just being kind as we really were in the middle of a rain soaked nowhere so now we were 4…..

Random villages appeared and disappeared with no clue of their name

But then the roads became wider, houses increased in number and we came out of the wilderness onto the main road to Bowness before heading up to windermere itself to catch the bus back to keswick through Ambleside and Grasmere . I may not be able to walk and climb as i once did but i can still enjoy the beautiful scenery trundling along on a bus even in the rain….

Although everyone likes it fine and sunny the rain troubles few and so it was that after a cuppa and recharge in my room, I went out and joined fellow drowned rats to wander round the town and ‘soak’ up a tad more than it’s tranquility. My last amble was to get my supper and look round the shops. The shopkeepers quite like a rainy day here, as they know it’ll be the time people will coming in for a brief respite from the rain.

In was at this point that the end of my day threw me a curve ball……..last couple of shops and I headed into one only to make a dramatic entrance and SPLAT! I decided to enter head first…….frightening shopkeepers and shoppers alike……….🙈 so embarrassing and convinced that if I didn’t get up quick, they’d call an ambulance….so with the help of 2 shopkeepers I stood up and made a hasty exit amidst cries of concern. I was convinced that if I was taken into hospital they might not let me out once they knew I had dementia – all these thoughts going through my head in seconds…….

I arrived stressed and would be leaving as a calm, if not aching and scary looking panda 🐼 🐼 , having frightened Cathryn to death when I went down for breakfast…….but the view out of my window was all set to welcome the next lucky person staying at Appletrees…..

My Continuing time in Paradise…….

Continuing on from yesterdays blog…….once Nicky had left me I sat on the bench at the end of Friars Cragg, alone, soaking up the peace, when my thoughts were disturbed by a Chinese family. The father came and sat with me and we chatted amiably about the view. It was his first time here. He told me he was from Milton Keynes, a place I lived for 30 years….small world syndrome appearing once more.

We continued our chat as his young daughter and wife took photos of each other….he was quite an old dad for the age of the children and was saying how his youngest son wouldn’t walk to the Cragg as it was boring. He was too old not to enjoy this beauty and made a decision there and then to work less and enjoy the peace more……..

A lovely chat with a random stranger……..with the beautiful view to enhance our words

I trundled back to Appletrees, taking piccies on the way. It was still cloudy, but even a grey day creates its own beauty here in Keswick

The following day I opened the curtain to low cloud hugging the hills but the promise was for a brighter day

I don’t think I’ve ever been in August before so the crowds took me by surprised when I arrived, but I simply enter my own little world and am alone. It was market day on Thursday, which I love in this little town and ambled round before catching a bus that starts and ends in Keswick. I stood at the bus stop with 2 men, one young one old. The youngest was telling us how he tries to get here every week to walk. It’s a 5 hour journey each way and he gets back at midnight 😳 – this is how much he loves Keswick….The older man was doing as I was. He’d climbed all the mountains in his time but now, hunched and frail, he takes the bus to see the views…..lovely strangers…

The bus takes nearly 2 hours, but takes in places I could never get to any other way. Along the bottom of Cats Bell, taking in Seatoller before crossing the wonderful Honister Pass

Then it was down alongside Buttermere, Lorton and Whinlatter before heading back to Keswick. Streams were clearly visible cascading down the mountains….simply wonderful…
The bus driver navigated the narrow steep roads as if they were motorways and the views were simply stunning, One elderly woman on board, as we trundled along shouted, “let’s burn some rubber”…which had us all chuckling as we rumbled along…

As we pulled back into Keswick, another bus was waiting to leave and after checking they came back to Keswick again, I hopped on that one for a shorter journey through the Borrowdale valley alongside Derwentwater. I don’t think I’ve ever seen the lake so high in summer and the famous Lakeside walk was impassable in some places unless you were prepared to paddle, which some were happily doing! Their shoes and socks in hands and echoes of laughter heard as feet met the cold water….

After a cuppa and rest I trundled down to the Lake and caught the launch to see the high lake close up. Some landing stages were closed and the rest had to be negotiated differently and the ends were under water….

Heavy rain is forecast for Friday so I decided to walk……..and walk……and walk

 

Until my legs told me to stop….but not before a last piccie of the evening

A fight with dementia and national rail day…….

August is always a quiet month for travelling far and wide and yesterday was the first time I’d had to sort myself out as it was a ‘me’ journey…….

Luckily I’d booked the tickets ahead of time as I siuddenly had to think, ‘How do I book tickets’….but thankfully they were all waiting for me in my calendar……..phew!

I got up excited at the prospect of going to my paradise of Keswick, but also a bit discombobulated as the routine of travel had left me and, what is usually a clear process of a journey ahead was a misty haze………

The day didn’t get better……a strange taxi arrived….not the usual company logo on the side and pointing the opposite way to usual….🤔😳……..but it was outside my house…….🤯

I went outside but it didn’t feel right……different cab, different driver….was I being abducted by aliens 🧐🤨😶😐

But a smiley face got out and said he was my taxi, he was working for them today as it was race day…….🥵🥵 all was revealed……..

I then thought the day would improve………but British Rail had other ideas……I got to Hull only to find my train to Manchester had been cancelled….🙈🙈🙈🙈🤯🤯🤯🤯🤯 luckily there was a woman at the board who must have seen my lost look and asked where I was going……..she took my suitcase and said, ‘follow me’……😳 ‘If you get on the London train about to leave, that will take you to Doncaster……..😶😳🤯…..as it was about to leave I was on it before I could remind her I was going to Manchester……🥵

No sooner was I on that it pulled out so nothing I could do…I sat and do what I do best….got a cuppa and looked at my phone……I was pleased to see a message from my partner in writing, Anna, so I told her my predicament and she calmed me down showing me piccies of her cats Derek and Clive………❤️🤗…just what I needed……….we then decided we should stop chatting and I should find a smiley face to help me…….and I did…..obviously I would have txt Sarah or Gemma if I’d not been able to sort, but Anna just happen to be there at the right time……

The nice smiley woman, who brought me a tea, also sorted me out and told me there was a train from Doncaster to Manchester……totally different route but at least I would get back on track again…….hopefully……..

Well, got to Doncaster and all I saw at first was ‘Trains Delayed’…🙈…….luckily my new train was only running a few minutes late. But the worst part of the joureny was not knowing where I was as it was a totally different route via Sheffield……..so once we left there I was lost and just had to calm me down by telling myself that it was going to Manchester and I’d eventually get there…….now I just had to sort out if I’d get there for my connection……😶

Different scenery but still nice and matched my head …..grey and murky

Once I arrived at Manchester and found the Penrith train I felt much better knowing I was on the last leg and arrived in Penrith in no time at all. This sign on the platform always makes me chuckle….

The 15 mile bus journey is an even bigger delight and it trundles it’s way down the valley to Keswick, calling at a couple of little villages en route……the clouds were low over the fells and it was drizzling…..but it was still a joy to stare out of the window

I was meeting Nicky Taylor from Leeds Playhouse at 4. She was coming to my B&B, Appletrees, to film a short piece for an event I’m unable to attend in September. I’d asked Cathryn if she minded us filming in my room as the town was heaving and would be noisy. She was more than happy to help. So Nicky set everything up in my room and asked me all the questions she sent ahead of time. I’d typed the answers to make sure I said everything I wanted as my head wasn’t in the best of places after the nightmare journey.

The audience would be made up of clinicians, health and social care professionals and others affected by dementia, so she asked me questions about what could be done differently, what have I found challenging and how I react to criticism amongst other things.

She ended by asking me what it means to me to be in Keswick…..and I described it as my paradise of calm…..and with a view like this from my window, I hope you can see why…..

We finished off by going for a walk to the Lake and filming me at Friars Cragg staring out at the tranquility……..before Nicky took this piccie of me with Cats Bell in the background…

Week 3 of our Course – Adapting and Relationships…….

Yesterday saw me trundling early doors into York for the 3rd session of our Good Life with Dementia Course.

On Friday I met 3 lovely sisters in York; one who lived there, one over from Canada and the third, diagnosed in February, who was over from her home in France. They’d asked via email if I’d meet them in York for a cuppa and a chat. They were wonderful people, all doing their best to come to terms with a diagnosis and finding ways of understanding . I invited them along to Tuesdays session but sadly, Sue was on an early flight back to France that very morning. I was the first person with dementia she’d actually met in person as they don’t have groups like Minds and Voices in her part of the country and internet connection is very poor so I left them feeling very fortunate and lucky to have all my virtual playmates as well as in reality.

No one should be alone with dementia……..😔

Anyway, back to the fortunate me and I got up to a rainy day which definitely had an autumnal feel to it, but by the time the taxi got to the bus station, the sky was looking promising for the day ahead

Week 3 of our course was all around Adapting and Relationships. Me and Damian had talked about the flatness of last week and were both determined to make up for it this week.

It suddenly occurred to me that Damian went to set up and then came to pick me up from the station, so yestretrday we got our act together and he picked me up at 9am so I helped or hindered him to set up!

I went a different way to the station today and so got a different river view

But then must have taken a wrong turn and everything looked wrong…..lots of road works and noise…..so I was in a bit of a pickle, not knowing where I was……but I didn’t panic, I just followed the river and knew I’d come out somewhere close….and I did…….AND breathe……..

Damian picked me up and we set everything up before people arrived.

Tutor this week were me Eddy, Brian, Eric, Elaine and Brian…….

Everyone started to arrive and chat and laugh and catch up………❤️

We all went round and said our names again and then I started off the conversation about the importance of the person and those around them. When we get the diagnosis so do those around us and both parties need help and support from the beginning and that’s what missing in the diagnosis process. If the beginning is a confused mess, the mess will become more tangled……….I spoke about the advantage I see in living alone as there’s no one to move things around……to which Elaine piped up

Eric never moves things cos he never dusts!” ………🤣

It’s difficult to know what things not to do” said a partner

That has been something for us that has been very difficult for us” said a learner……”Readjusting to new roles and abilities……is so difficult”

The changing roles, when someone who has always, for example, done the driving, now suddenly can’t………”It’s demolishing a lot of what we’ve always done..” so it’s hard both ways

It’s not life threatening so I just get on with it”…….said our learner who lives alone…..

The whole aspect of your life as a couple changes, it’s a huge learning curve’

We do more things together now and it makes you think you have to make time to do those things and turning it into a positive instead of a negative……”

“Technology is making life difficult for me – I can’t do everything online,

“I get on as best I can as I don’t have any technology’………

People shouldn’t be disadvantaged simply because they don’t have or use technology……their comments put a new perspective on technology….

Such great discussion on issues suddenly arising that were never thought of or mentioned at diagnosis, people simply don’t know how to deal with it…….if all this was dealt with at diagnosis, how easier the transisition would be……

We watched Damian’s ‘Getting Along short 5 minute film, where couples explain the issues and talk….people with dementia don’t want to be defined by their dementia and carers don’t want to be defined by that title either – they’re husband and wife……..frustration and lack of knowledge impacted on relationships. So important to challenge misconceptions, to talk and give those in relationships the chance to talk through problems without it causing friction……

When you’ve lived with someone for 50 years, and done things the same way, it’s hard to adapt” said Eddys wife on the film…….

Damian said he met many couples “Falling into traps that dementia sets and tearing couples apart” and this is why he created the ‘Getting along’ sessions. Identity is often lost or changed when dementia arrives.

The partners can often look into the future and see a totally different world to what they were hoping for and go into denial and sometimes the person with dementia goes into denial simply through fear.

The demands of the house, and just everyday living comes into question”…my wife has found it difficult to come to terms with……

I said ‘ If services were suddenly to fill the gaps that are missing, it would cost billions in their eyes  as so much is missing, but if they looked at services differently they would see that the cost of referring to our course, for example, is cheaper than anything they could provide and nowhere near as beneficial”

“No one asks you how are you coping with the dementia” whereas if you’re diagnosed with cancer, everything is put into place for those that want it, support, counselling, it’s all covered ………dementia is forgotten in the grand scheme of things….

Tea break but the chatter continued non stop in small groups…..wonderful!

Those of us who are single said it was great as we don’t argue with ourselves, we don’t have the guilt and we can do what we want without being criticised.

I’m always saying sorry to my hubby” said Elaine

Paul always said  he’s been happily married for 10 years which is not bad after 56 years……😂🤣”

“Marriage is like a pack of cards, you start off with hearts and diamonds and end with clubs and spades…”🤣😂 all the one liners came out…..

Once you’ve accepted it you can do something about it, but it must be hard for those in denial, or don’t accept there could be

We asked what annoys you about the way people interact with you

Being patronised……

People saying ‘don’t you remember’?

‘You don’t look like you have dementia’

“Ive just been talking to him in the pub, he can’t have dementia’

Before we had a round up I spoke about not forgetting the children in all this as if they’re not included they’ll make up their own idea of what’s going on which might be far from the truth.

We went round the room to finish off and asked the learners what they were taking away…

Better for coming here”

“Nice to have everyone’s views’

It’s an opportunity to talk about things you often hide inside your head”

And in the blink of an eye, the 2 hours were up and I can’t believe I let the tutors all disappear without a piccie. But I managed to Eddy and me and Simon, as it was his last day with us before flying back to Belgium…

Last we we went a bit flat….whereas this week we got back on track and we had wonderful conversations……….everyone was animated and willing to share their experiences, good and bad and everyone seemed to feel better for doing that……..

It’s always exhausting yet exhilarating doing our course so I often fall asleep on the bus home…..but with views like this…..it’s no surprise as it’s a very calming trundle home

A ‘Dear John’ Letter to Dementia….revisited….

I’m sure I published it many years ago but dementia didn’t listen then and I’m sure it won’t listen now…….🙄

Dear Dementia,

We have to sit down and have a heart to heart………..

I preferred my life when you weren’t apart of it but now I can’t live without you – sadly – but there’s no need to be with me 24 hours a day. I’d like some time on my own please. You’re in my thoughts – constantly….however, sometimes I’d like to forget about you and you me, and return to days gone by, before you’d entered my life.

I know we’ll never part, and I know some days you’ll be insistent on making your presence felt, but some times it’s just nice to be single again and roam around and mingle like you weren’t there……to have conversations that don’t involve your name; not to have to think of plan Bs to accommodate your presence……..to simply be me…..without you…….

Some days you can stifle me into submission. On these days I accept we’ll just sit together and while away the time until you feel able to leave me alone once more.

If you ever feel you’ve made a mistake and want to leave me forever, I’ll be happy to wave you off and wish you well………….

Final day at Woodbrooke………

I know I’m a bit behind but this is about the final day last Thursday of our wonderful gathering at Woodbrooke. The day started off with a lovely chat over breckie with me and Agnes chatting about how we were feeling; how we felt we were coming to the end of our use or how we felt we wanted those coming up behind to race ahead but felt we could no longer keep up with them. We don’t want pity or to bring people down, we were just being realistic  but it was really good to say how we feel as we were both feeling the same.

We trundled along to our final session to the Art room. We had a recap of yesterday…..and about the bonfire last night that I didn’t attend but sang along with them in my bed when they sang ‘WHY, WHY, WHYYYY DELILAH…..’ in full voice ⭐️😊 which I could hear loud and clear through the woods– wonderful! I’m sure I was swaying in time with the others as we sang 🤣 I couldn’t have coped if I’d been with them but I was as happy as Larry joining in from my own space.


I think this might have been taken by Philly…

Philly had to crack her proverbial whip and shut us up, stop us going off piste, keep us under control……😂🤣 no easy task! – before introducing Paul Myles and Zoe Jewell from ‘On our Radar – the original founders of Dementia Diaries, many years ago, before we became Dementia Diaries.
They were here to talk about the film they’re making for the BBC following people with dementia over a 2 year period. They wanted to hear our thoughts on the content.
But first he spoke of the origins of On Our Radar, which became Dementia Diaries. They didn’t know at the time whether anyone would record, but once they started to come in, they thought, WOW……and the rest is history…

They’ve been asked to make 2 x 1 hour documentaries for the BBC on peoples lives. How peoples lives change with dementia and an opportunity to show how people adapt and show the ups and the downs. They’ll have 6 people, and hope to show the experience of diagnosis, the early stages, the later stages and address many issues currently portrayed incorrectly.

We broke into groups to discuss what themes might be useful to understood. Secondly, stories that evolve with dementia, which better reflect the changes that effect people with dementia.
We started with themes and had to come up with 8 ideas in 8 minutes.

I was with Chris, George and Agnes and we decided to go outside as the noise of conversation was too much inside, but we were able to get through so much outside in the fresh air.

We came back together and chose one theme to explain why it should be on there.
We all had end of life as a theme. But I said it mustn’t be seen as something just people with dementia have to consider but everyone, it’s just that dementia often gives us gifts and the considering of the future and planning while we’re still able is one of them. Then we can carry on living as the future is taken care of……

Our group said “Living Alone’ as more people are choosing to live alone and some are choosing not to have children. Government often assumes that family will provide care and that assumption shouldn’t be made. Some families leave because of dementia, some families don’t get on, some families only want to hear good news and not be responsible for the bad.

We had no problem coming up with ideas for Paul and Zoe and could have talked all day to them, but the hour was up before we started and we had to move on. We easily cane up with 8 themes. It should be an interesting documentary but it’s what they show and the way they show it that will make people think differently about dementia.

After a break and a nice chat with George over a cuppa, similar to the one I had with Agnes in the morning,  we sat down to our last session before we were due to leave after lunch…….

Philly started with updates from 3 of the research projects that are being done on Dementia diaries,

Dr Jack Wilson from Salford is a linguist studying the words and language people with dementia use. The words we choose to use. Analysts are using some of the diaries to draw some conclusions about the language diarists use and then set it against the language used in the public sphere and in particular in the media.

Occupational Therapists, Fran, is doing her PhD using the diaries and we listened to a video update from Fran herself. She found such a sense of community on dementia diaries, no ‘jealous holding’ of the spotlight and an encouragement for others to find their voice.

Another video update from Amanda Lazar from America. She’s an assistant professor at Maryland University. She interviewed a few of us at last year’s meeting. She studies technology design. They were struck by how comfortable we were sharing our stories and how Dementia Diaries make us feel safe. It’s a non judgemental community. They found a higher level of trust in the Dementia Diaries platform.

We then went to Aimee who told everyone about the Zoomettes…..but first, those zoomettes who were there all went and sat at the front.

Frances told everyone who we were. We meet every Monday via zoom with Aimee and Anna trying to keep us under control 🤪 It’s nice because we havn’t got to get ready to go out and are in our own environments and talk about whatever we want. We feel safe talking about anything because we’re all women. Aimee and Anna are coming up with guidelines that will help anyone set up a zoom group. It’s important to have a way of checking people are ok after the call if it’s been an emotional one.

Aimee and Anna are doing lots of things in the background to come up with a check list….

Culturally women are used to coming together and men, even though they might want to,  can find it difficult to talk. However, it doesn’t suit everyone. Everyone needs to find a niche that helps.

Philly cracked her whip again and brought that discussion to time and then it was Steve to give us an update on funding. Funding for DEEP finishes the end of September and June for Dementia Diaries. So they’ve put in for more funding to bring DEEP and Dementia Diaries closer together. They want to increase the breadth of conversation and use of the fabulous resources we create. Lots of themes and issues will then hopefully start to bubble up from grass roots.

We want to make more use of our diaries and be more proactive in spoon feeding those that can make change happen, giving them the information to bring about that change.

Sadly, it’s always about money…..money coming to an end and the search for more money……

Ron was the first to leave having the furthest journey so we all went outside for a group piccie, which the gardener kindly took! Before we went back to the room to wrap up our thoughts…..

We finally went round and each said a quick reflection of the gathering…..i said….

It’s felt like a big smiley hug of a family”…….

Nice positive comments to end on…….’til next time…..bye bye Dementia Diaries Gathering, class of 2019……

 

First full day at Woodbrooke…..

Following on from Wednesday’s bad night, for some reason I must have set my alarm..😳….but also turned the volume to full blast…🙈🤯…..so it frightened me to death when it went off and probably woke the whole corridor 🙈

The sun was shining with a welcome outside my window and, after a shower I trundled down to breakfast to find Howard, Agnes and Julie already there. People slowly joined us and we chatted amiably. I decided to go for a walk round the grounds before we got together at 9 to soak up it’s calmness

Henrietta from BBC Woman’s Hour was coming to record some of the women’s thoughts on music and dementia, but was running late, so she wasn’t arriving until 10. So I trundled back to my room. More people were arriving so it was certain to be a lively group after lunch when we started officially.

Henrietta finally arrived and the women taking part in her ‘fishing exercise’ gathered together outside to chat and be recorded.

Henrietta went round each person and asked us a bit about ourselves and then the impact music has in our lives now or any stories we had to tell. It was lovely to hear all our stories about all our lives. All individual, all unique yet with dementia in common, very emotional, very personal…..people revealed so much yet the private person I was won’t allow me to reveal too much of the me in the past. I was truly such a private person that that era in my life still remains in my mind only, tightly locked away…..strange how dementia has changed me…..but only to be open since dementia…..which meant my contribution was boring and uninteresting, whereas I could have listened to the others for hours…..

You could tell the ones that would be a perfect match for Woman’s Hour, so full of depth and interesting history. I hope they go ahead with it, my playmates have so much to offer….

All this took us up to lunchtime. Even more playmates joined us, Paul, Tommy and George, all with hugs at the ready.

Steve had forgotten to bring the I want to Speak Cards so Philly sent round a box of shells for us to choose one to raise if we needed to speak.

There were such a lot of us that we went round and introduced ourselves as many people had only met virtually. I did take a panoramic piccie with all of us but it wouldn’t load on my blog 🙄

Steve was taking notes, Philly leading and Aimee was there to help us.

The aim of Innovations in Dementia is to get our “Voices heard and our Rights Recognised”

So what have we ahcieved over the last year? 420 new diaries have been published in the last 6 months and there are about 40 active diarists. There have been 60,000 audio plays in the last 6 months!!! That is very impressive that so many people listen to us all over the world.

Philly showed the film made for BBC Springwatch by Dementia Diarists and although wasn’t shown on their programme, went on their digital platforms, so seen by hundreds of thousands.

Health Education England are using Dementia Diaries in their training for Health workers in England. Each theme they cover, they use diaries as examples.

Glenda suggested we put a photo along with our diary…..and Steve said it would be no problem, so he’ll be inundated with piccies now😂

Lots of interesting suggestions about being more proactive. There’s loads of work Innovations are doing in the background to make Dementia Diaries even better…….

It’s important to show ourselves as people not just people with dementia.

We went a tad off piste and got carried away with other conversations, so luckily it was break time, to allow Philly to bring us back on track after a cuppa.

So after a cuppa and cake break, we started to speak of the experience of making a diary, about how to rant without causing offense.

Ron read one of his poems which speaks of his anger, which he feels when recording a diary. I’m lucky that I can’t feel the emotion of anger anymore. I’m lucky, I feel happy or sad. I’ve learnt through not getting angry that people don’t get immediately defensive and I’ve just learnt how to make a point without the anger.

In this room are people from all walks of life and all types of professions – I’m not dementia, I want to keep me as a person within that thing we call dementia” said Ron


Great piccie by Elen of me trying to take a piccie that didn’t work!

Anger is a sign that something is wrong, just as we say ‘challenging behaviour’ is a result of a need that isn’t being recognised. If we get angry about something, it means something has upset us, so people need to listen.

As Mhari said, “We have a Right to be angry”

Sometimes anger is justified” said Agnes.

Society expects us to be compliant but why should we be with all the rubbish that’s thrown at us.” Said my lovely adopted brother, George.
The views of people with dementia have been suppressed for centuries and Dementia Diaries gives us that ability to speak our views and hopefully be heard.

Wayne finished off by asking people “Who do you think you’re talking to earn recording a diary?”

I said, I always imagine a massive empty room and then one lone person is seen listening who actually benefits from what I had to say.

To finish off before supper we went into the piano room to listen to Paul sing one of his wonderful songs…..beautiful “The Carers Song” – he’s really an amazing talent on the piano…..and to record, at the suggestion of Ronald “What inspires you to record a diary”

An exhausting but fabulous day……Final day on Mondays blog…..

A Gathering in Birmingham at the beautiful Woodbrooke…..

So after Tuesdays  session 2 of our course I headed down to Birmingham for a meet up of Dementia Diarists. I’m having real trouble finding my sparkle these last few weeks. Really don’t understand why, but in York, the new and old playmates allowed me to find it for the time I was with them, and hopefully the same will happen with my fellow diarists……..

Steve Milton from Innovations was going to meet me at Birmingham. I don’t think I’ve met Steve in person and I don’t have the same confidence in men as I do with women….there’s only a few men I would trust, my son in law, Stuart, being one and with Damian from Minds and Voices. I did struggle when Emily left Minds and Voices though and almost thought I’d have to leave simply because it was just Damian, but that would have been a bad move for me and I’ve got to know his shortfalls and simply trust him because he’s got a kind heart and I’m sure Steve will be the same. I’ve lots of male friends but trusting them to be organised always seems different.
Philly and Aimee will be at Woodbrooke so I’m sure all will be fine. Just me being me I imagine…….historic emotions coming to the forefront….

Anyway…..I arrived in my least favourite station, Birmingham and made my way to our rendezvous place, Pret A Manger. I had a slight moment of panic as Steve wasn’t where Rachel usually met us, but he soon appeared when I txt him as he was inside with the lovely playmate Ron Coleman. I’ve only met Ron on Twitter as he lives on one of the beautiful isles off the Scottish coast. We were soon in a taxi and happily chatting so all was right in the world again. Apparently I have met Steve before but many years ago, bur sadly still didn’t remember….😔

Once at Woodbrooke, we were shown to our rooms and I lay in silence typing away on my iPad and taking in the wondrous view from my bedroom of their delightful, peaceful grounds…..

I trundled down for supper to be met by a smiley Philly who, after a hug, helped me with my tray and I sat next to Shelagh and Howard. As I chatted away familiar faces came into view in the distance and amidst smiles and waves, more hugs from playmates followed. The sparkle in their eyes making me smile. It was nice to be in the company of such genuine playmates again.

Eventually overwhelmed by the sensation of noise, I returned to the silence of my room for the night. Sad to leave the comfort of friendly faces yet in need of solitude, Philly once more came to the rescue and unobtrusively led me gently back to my room where I thought sleep would come quickly, such was the tiredness that engulfed my body…..but my buzzing brain wasn’t ready to settle….

The hours passed by yet my short circuiting brain was determined to delay slumber. My eyeballs wide away and active beneath firmly closed relaxed eyelids. Yet the buzzing and crackling in my head refused to settle down.
At 02.10 I decided to give in to its constant demands, reached for my iPad and type these words in the hope of appeasing it’s desire and exhaust it into submission.

The thought of a long day ahead and even my fingers, too tired to type, made me stop. I’ll close my iPad and be plunged into darkness in the hope that the silence will be inside my head as well as the world around……..

Week 2 of The Good Life with Dementia Course……

So yesterday I found myself with the hat on of Chief Press Officer as well as Chair Monitor as it was week 2 of our course, designed and delivered by people with dementia alongside our able enabler Damian. Our course originated from Innovations in Dementia and me and my playmates at Minds and Voices are the first group to put it into practice.

The Tutors this week would be my 3 playmates, Eddy, Rita and Stewart, but I was there to write my blog so we have a record of each session. – well that’s my excuse anyway 😂.

The first week seemed to go down really well with our ‘students’ so here’s hoping they all arrive again. I’d be travelling to Birmingham afterwards for a Dementia Diaries gathering so the taxi took me, armed with suitcase to the bus station to catch the first bus of the day…..passing by a beautiful morning on the Westwood……

I got to York in plenty of time so ambled along the river and watched the rowers getting ready to enjoy their day

And a beautiful Roman tree (IThink!), covered in berries……..

Damian picked me up and and we trundled to Lidgett and helped Damian put everything out. We were soon joined by early arrivals of 4 of our newbies along with Eddie and Stewart.
The others soon arrived.

Simon from Belgium was there – last week I turned him into a female calling him Simone.🙈🤪

Sooooo…..Damian started session 2……called, What is Dementia?

What happens in the brain, discussing symptoms and the way it affects us. The main point is it’s not our fault! It’s a progressive loss of brain cells.

We recapped on last week. “The uncertain thing about dementia is the uncertainty” said Damian.

What do you understand about your dementia?

I don’t’ – said our Rita

Loss, being in the moment – brain cells can’t be recapacitated’ said a newbie

It’s a nuisance”

Effects us differently – our circumstances and personality affects how we cope”…I said…..see I knew I wouldn’t be able to keep quiet…😂

There’s nothing you can do about it, I have my wife and the good lord what more do I want” – said our Eddy

You can’t just say you have to get on with it, You have to have some , that’s what I’m here to learn” – said a newbie

If you went to a doctor and said you had spots on your hand, and the doc said you had a rash…….it’s vague, just like saying you have dementia. Still so little known about the brain.

Damian went through various functions of 4 areas of the brain and what they do or don’t do.

So for some people if they understand why something happens it helps to cope.

We’re never told what’s going on in our brain – Eddy said, “seeing that on the screen has made me think now, why weren’t we told that”

We’re only given half a message”

It’s fine being real but it’s how it’s delivered. One newbie was shown his scan and it frightened him to death, because of how it was delivered. Words really do matter!

We went through symptoms, but in a way people affected by dementia described.
E.g. “I cant remember what I did 5 mins ago” – the professional might describe as anterograde amnesia, which means nothing to us mere mortals…

One newbie has 7 folders for each day of the week and puts things she needs for each day, so everything is ready – wonderful as she doesn’t have the internet so has found her own way.

We talked about technology, apps, Alexa etc.
Eddy told us about the Guardian Angel wrist band he wears, which has all his detail on it. Soooo many techs bits came out of the blue from people which was marvellous, but then Monica said she didn’t have a mobile phone or internet and so we came up with something to help her. I told her about the SOS bracelet where she can store her details in case she gets lost or something happens in the street……always a way,

Tea break

We were given 10 out of 10 for refreshments……😇

We spoke about balance and showed Agnes Houston’s book on screen

We spoke of hyperacusis, vision, taste, and how our senses can also be affected.

We weren’t highlighting all this not to frighten anyone, simply to say, don’t be afraid because if you understand why, you can do something to compensate for that sudden inability or issue.

Damian showed some links to Dementia Diaries, the BBC film me, Keith and Christopher made for the BBC.

My biggest Complaint about dementia is:

“Other people”

“People suddenly stand off” as one of the newbies said…..

Damian showed the Kitwood Flower….

Damian showed his favourite quote from his favourite book

Once again, lots of discussion.the newbies are joining in and sharing their thoughts just as we were hoping. Next week is all about adapting with three more tutors, but before leaving, I managed to get the adorable trio from today…

I felt there was something missing today and I don’t know what it was……Stewart was quieter than usual and Rita was feeling sad about having to move into a Care Home and leaving her house of 50 years, she was devastated, so maybe that left a sad air or maybe it was just me being below par at the mo……just can’t put my finger on it……

Now off to Birmingham for 2 nights for a get together of Dementia Diaries……..