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.

Changing Strangers Attitudes….Poem

I met a stranger on the train the other day

An American visiting her cousin

We chatted happily, Shared a joke

And then suddenly silence……

 

She saw my card, and looked quite shocked

And silence hung in the air

I said how I’d just been to Cheltenham festival

On stage not in the audience

 

And suddenly her demeanour changed

Wanting to know more

Her parents both had dementia

I wasn’t like them at all

 

I then proceeded gently

Her listening…. acutely

She wrote down the name of my book

We shared a common surname

 

As she left she smiled

“It was lovely to talk to you”

“I’ve learnt so much”

I’m going home…..

To talk………

 

Ilkley Book Festival……

So todays blog is all about Sunday! It was an eventful day for more reasons than one.

If my parents had been alive still it would have been my dad’s 100th birthday…..my mum would have been 100 next month. But they also got married on his birthday so they would have had a mega long anniversary too…….

It was also the day I spent 2 hours on a Chat to Apple support as the latest update made all the reminders on my phone disappear…..🙈🤯😳😱……they came back with their new look on my iPad, but not my iPhone….so for me that’s a catastrophe…..

I saw bits of my phone I never knew existed during that long 2 hours but we couldn’t find a way to restore them – so I ended up having to arrange another chat as I was exhausted …..so maybe by the time you’re reading this all is right in the world…….🤞

But the other happening on Sunday was I was at Ilkley Book Festival with Nicci Gerrard once more. We’d spent Friday at Cheltenham together and now we were at Ilkley. Sarah had offered to take me to the station so no worries about the taxi being on time 😂….it was another wet grey day……

but I was looking forward to the event as several people had emailed me saying they were going. A wonderful previous NHS manager, Helen Gilbert, was coming. Helen spotted I’d had a stroke when I was at work and looked after me until she went onto pastures new…….My ex’s neice had also emailed to say she would be there – I knew I wouldn’t recognise her as I havn’t seen her for many many years, so that would also be lovely!

Becky from the event txt me in the morning to confirm she would be meeting me at the station carrying a sign. She also said she’d be dressed inb all black…😳…black is a bad colour for me and many people with dementia so I’m glad she warned me as she’ll look like a head floating without a body 😂🤣😂 🙈……..

The first and second train were on time……and surprisingly full for a Sunday….the third train to Ilkley caused much confusion as there were 3 trains on one platform and no one seemed to know where each was going 🙄….and they all had Leeds on them🙈…….one woman looked at her app for me and we decided we’d plump for the middle one….🤐……there was a nervous wait until the guard announced it was the train for Ilkley and everyone signed with relief and could smile once more…

I arrived to find a person carrying a sign but also an umbrella as it was raining…Ilkley didn’t look at it’s best. Nicci had already arrived and had decided to walk around town, but the rain had defeated her and she was waiting for me upstairs when I arrived at the venue.

We chatted happily until our interviewer arrived……for some reason I didn’t type at all while we were waiting….or at all again until I was in my room……I think it was because the event was a late one for me…..neither did I take any piccie 😳😱🙈🙈🙈🙈🙈🙈 It had been a very long week…..

So the what I remember as I’m sat here afterwards in my hotel room……..a full room of warm welcoming people ……questions galore at the end…..and before the book signing everyone sang happy birthday to my dad……who would have been 100 today…..what a lovely way end…

We signed books, heard lots of stories and had lots of hugs. Sadly I didn’t see Louise, so maybe the weather prevented her attending…..one woman came up to me in tears as I was on my way out…..  saying I’d gven her hope……how amazing…..

But my highlight was seeing Helen Gilbert, we hugged we chatted and we hugged again. She drove me back to my hotel where we chatted about this that and everything…..and of course…had to have a piccie…and this time I didn’t forget…

Now, at last I can start getting ready for Italy on Wednesday……did I just say that….😳🥴

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

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

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

https://whichmeamitoday.wordpress.com/2018/10/11/starting-to-run-on-empty

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

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

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

https://www.theguardian.com/books/2018/jan/28/wendy-mitchell-somebody-i-used-to-know-interview-dementia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Time for a quick piccie

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

My Trial of the Guardian II Watch…….

I’m often asked if I’ll try things in the hope that I’ll like them and write a blog but I rarely say yes to such requests as I feel a tad used. However on a couple of occasions I’ve said yes, simply because I can see it has the potential to help many people. So it was for this reason that I said I would test the Guardian II Watch. It’s potential seemed huge on the face of it. The ability for supporters to retrace and track our whereabouts, our heart rate for health issues etc. So when it arrived in the post I was really excited to get going with the trial……..so here’s my thoughts, written as they happened, so maybe a tad random….

I got in a bit of a pickle setting it up…..I didn’t realise that I didn’t need the app…..it was my daughters or those needing to keep tabs on me who needed to do all that bit but the watch had to be with them. I suppose they imagined someone else would be setting up and not me! 🙄

However, I went on their web site and had a lovely on line chat with their technical support who helped me through it. It was far simpler than I’d made it. Might have just been good if the instructions had been a tad clearer at the beginning about who needed to download the app……

I’m not sure it’s made for someone with dementia to benefit from but I can see how it’s potentially useful for those supporting someone….. I thought I’d be able to see where I was on the watch, but I have to go on the app to see that.

I wish it wasn’t black…..black is such a bad colour for me – the red emergency phone button is good, just not the black…..

Steps don’t appear to be accurate at all….i know my routes and I know my steps and it was often way out.

So all in all the benefits come for those not wearing the watch, that is if it works how it’s suppose to work….

Once I got used to how it worked I began to understand it but it wasn’t intuitive for me.

When Sarah loaded the app it still wasn’t clear and we added the device but it still said add device when we tried to load it again it said request already made. The Home screen simply went back to ‘Add Device’…..we deleted the app……when Sarah tried to log back in it said ‘user did not exist’….🙈

The one thing I liked was the red button which can instantly make a call to numbers you enter in the phone, like my daughters in my case. But it was acting like a back button….i couldn’t make it call anyone. Found out you have to press and hold down the red button.

All a tad confusing……

In the instructions, to set up it should have – If you are the wearer, do this or If you are the supporter do this…and they did listen and accept that would help….

The heart monitor doesn’t seem to be accurate all the time. At one point it said my heart rate was over 100 but when I took it at the same time, it was 70 – which could obviously cause a panic when it’s not needed. Sarah, a nurse, also took my heart rate…..totally different reading and potentially could lead to action being taken when not necessary. The pattern overnight and during the day were quite similar and didn’t’t seem to make sense


Night time

Day time..

Having to charge frequently might be a problem – it says every 2 days, but I had to charge mine every day ….but it does send you messages to charge which is good and buzzes on your wrist.

Ideally It needs a one click to find real time tracking. You can compare it to a poor website that’s hard to navigate. When you need to find where someone is walking and the direction, you need it immediately. Supporters lives are stressful enough they need simplicity whereas this creates anxiety in its complexity and delay.its downfall is its complexity.

The playback data one day said I’d been to Southampton but in fact I’d been to Birmingham and nowhere near Southampton 😳…

Its not actually tracking me as it goes in a straight line as the crow flies. Not intuitive where you find thingse.g to click on a plus sign to find tracking. It only joins the dots of each point located so thats not really tracking to me.  If i went for a walk at 3am there’s nothing on the app that will help anyone unless maybe they happen to be looking at it at 3am

One day I went to York but it only said I went to Market Weighton and then another day it said I stayed at home when I went out on the bus.

So …….all in all….if it did what it said on the box it would be excellent, but quite simply ….and sadly…….it doesn’t…….I wonder if people with dementia and supporters were involved from the start in the creation…..🤔

Anyway, I sent this part of the blog to the company in order for them to have a right to reply and admittedly they did seem very surprised at all the problems I’d had. In the end they asked if they could send me a replacement to start again, which I accepted. It also had a blue strap 👍…However when it arrived, me and Sarah decided that we would set it up as they intended with her as the set up person. But this is where the trouble started again…….

We followed their instructions to ‘unpair’ the old watch, but then it wouldn’t recognise either of us as the ‘admin’ person. So I had to send the company of a screen shot saying that set up was ‘processing’ but going nowhere….🙈. We couldn’t register as new users and it was as though they needed to totally take us off their system and start again …….

Support came back to my email quickly and suggested they set it up for me – not quite what I wanted but our patience was running out.

However it worked, although it did tell me I was in China one minute and home the next

Kept telling me battery was low when I’d just charged it to 100%

Another day arrived I was back in China again 🙈

The walk I did around the village didn’t track correctly

After they’d done a check on my phone they emailed back to say it had been connected to the persons international phone and they’d forgotten to remove my new watch from the server…..It’s definitely not tracking me every 10 minutes as it should do.The map it then gave wasn’t correct ….

Sadly also, I was back in China

On Thursday when I’d walked miles it said I’d walked 702 steps.l….

The company decided to send me a 3rd watch……..I’d suggested the time zone was incorrectly set, which they agreed, which is why I was appearing at my daughters at 4am in the morning 😳🙄…..and why other strange things were happening time wise.

I decided it might be 3rd time lucky, but sadly we weren’t impressed. It had me travelling to venues several times back and forth when I went once…..

my heart rate still didn’t seem right and the steps really weren’t right. The final straw was when it showed me back in China or Japan or somewhere.

Fair do to the company they did try and fix the bugs and listened to what I was saying. What I hadn’t realised was that it was already on the market and being sold for £200 …….when I said this they said they hadn’t had any come back from any other customers.
However, I pointed out that perhaps customers would believe what they were seeing. They weren’t trialling it. I scrutinise everything when I’m asked to test technology, so I never believe what I see. But the unnecessary worry it could cause if others have similar or even lesser problems is not on…if you pay that much, you expect perfection….

Would I recommend this watch – certainly not at the mo. If they sorted out all the gremlins and it worked as it was suppose to work, it could be perfect and just what we need….…..it’s another case of ‘involve us from the start of the seed of the idea to avoid issues”……

A Trundle to support a playmate……..

Yesterday I had a trundle to Halifax – don’t think I’ve ever been there before 🤔…..

A lovely playmate of mine, Julie Hayden, set up a DEEP support group for people with Young Onset dementia in her area, because, once again, there was nothing……..

Julie had contacted me a while ago to ask if I’d attend their annual awareness event which also happened to be their 2nd birthday!

Originally it had been planned for next week but then I got a sudden unexpected invited to speak in Italy 😳….did I just say that……gulp🤯…….but more of that next week……

Anyway we managed to switch and change things around so it fell on their second birthday instead, so was meant to be….

The sun was shining on the world when I opened my curtains…..but the taxi driver was late….I rang their number as usual, and my lovely phone person at the other end knew it was my number, said ‘Hello Wendy, sorry he’s late but you’ll still be there in time for your train’….all I had to say was ‘Thankyou’……perfect….wonderful when people are prepared to understand…..

He was a very chirpie driver, who sang ‘Mr Blue Sky’ all the way there and we arrived with 5 minutes to spare…..⭐️

I then looked at my email from Julie and we’d agreed for me to be met at the station at 13.24…..I seem to get numbers in a pickle of lately and had actually left 2 hours early 😳🙈🙈🙈🙈……but when I got to Hull, my train was mega delayed so for once it didn’t matter 🤣

I tried to add 10 to 38 and came up with 58 🙈 but knew something wasn’t right……maths was my strongest subject at school…😔…..numbers so often become a problem for people with dementia and that seems to be becoming the case with me…..me thinks it’s because I travel nearly everyday, that I don’t panic. I txt my daughters just in case I forgot to tell them this latest issue and Gemma immediately txt me back asking if I needed to FaceTime for help but I’d already found a smiley faced guard to help me…..if I didn’t travel often it may put me off travelling……..

Anyway…….the sunshine over the Humber cheered me up

The chaos didn’t stop there as, due to the train being mega delayed  they decided it would terminate before Manchester, so lots of travellers were looking for that smiley face again……..her smile was tinged with fraughtness by now……..🤯

I arrived in Halifax, watched the world go by for a while, due to my timing and was soon met by Rosie from the Alzheimers society who was having a stand at the event. We ambled along and a few minutes later  were in a wonderful renovated church  which has now been converted to a community venue where they have a theatre, café and many rooms……..and of course my first task was to have a hug with playmate Julie

It was an event specifically aimed at highlighting Young Onset and I was hoping word would get round that Julie’s DEEP group exists…….the Mayor arrived as did some other helpers. We were hoping the weather wouldn’t put people off, but you just never know at these events……

After waiting and waiting, it was obvious that people just weren’t going to arrive. I felt sooooo sorry for Julie……people put in such hard work organising events and when people who promised they’d come fail to turn up it must be so disappointing. I don’t mind….it happens. You can’t force people to come and listen…….but my heart sank for Julie……….

So instead of what was planned we simply sat and chatted and that was nice in itself. It also meant I could catch an earlier train home which is always welcome. However, arriving at Leeds I found more chaos, more cancellation, more delays……so my ‘on time sardine’ train didn’t seem too traumatic……….🙄

 

Another Trundle…..more learning…..

So after a day of celebrations on Monday at Bradford Uni, yesterday found me trundling to York Uni to hear the findings of another study that was coming to an end. This one was of particular interest to me as it was about post diagnostic support in the form of a course – but a course designed and delivered by professionals……had it been a success?

The dully grey day of Monday had been transformed into the blue sunny skies of Tuesday….it was a slightly later start so I had time to catch my breathe before venturing out in the taxi at 09.40

They’d offered a car to drive me to York, but I do like my trundle on the bus and the bus costs me nothing so made sense. However, although York is only 20 miles away it’s a nuisance to travel back in time to get the last village bus, so their offer of a car back had been  gratefully accepted….

The taxi man checked with me that I didn’t want to go to the station 😂…..as this one had never taken me to the bus station before. The Westwood looked glorious in the sunshine but sadder for the absence of the town cows as I assume they’ve all gone to market now….im glad I don’t eat meat……🙈

Jessica, the Trial manager, was meeting me at the station and sharing a taxi to the uni. The blue skies of home had disappeared once I reached York, to be replaced by the a sad grey threatening rain…. There were also roadworks that brought us to a halt and I ended up being late and rushing through town …..but just enough time to snap a piccie of the flooded Ouse by my whirlpool bridge…(I mention the whirlpool in my book)

…arriving at the station puffed out but Jessica was waiting patiently….

The room started to fill up with familiar and unfamiliar faces, so we went round the table and  introduced ourselves as everyone involved in the study was here this time. I’m used to be part of the Trial Steering group, but all the different groups were there today…..

The first part of the meeting was all statistical data and graphs but Jessica or Zoe had gone through each page and written me a post it note explaining what each meant 👍⭐️

We went through the baseline characteristic data. There were 28 intervention groups. Half the participants received the Journey through dementia sessions and half didn’t – they simply carried on with their usual care….

After participants had attended the sessions they were then revisited after 8 months and 12 months.

Now obviously the data hasn’t been made public yet so I’m not allowed to type about the outcomes. I kept typing/deleting/typing/deleting 🤣 It’s embargoed until a December event….but it was fascinating listening to the statistical analysis and seeing what they measure and how…..me thinks they have to be a very special breed of person to be a statistician….🙄

We the went through the cost effectiveness analysis of Journey through Dementia intervention. So this was the health economists data…….looking at cost of training, cost of delivering the intervention etc…..The cost of the training – cost for trainers, admin costs, overall, staff receiving training….. ….again, fascinating seeing the potential cost of running such a course.

We next heard about the qualitative part of the study – for me the good bit as it’s more about what participants thought……  they selected 4 sites to carry out observations and interviews…..talking to people often gives more in depth information than the information gathered from forms…..this gains a more holistic view…

Once again, fascinating insights but not unsurprising to me, yet seemed to be to some of the group present….

The thoughts of the trainers were interested…..the expectations they had on participants and how they thought the delivery went….

Gail Mountain, Chief Investigator, is a huge advocate of co-production and a wonderful person in wanting to include people with dementia. I can’t wait to reveal the finding as I have much to say and many thoughts……

We all agreed that the current measuring of success for people with dementia needs a revisit. It’s no good asking people about the last month or the last week as we simply can’t remember…..so hopefully someone will design a new model more appropriate for people with dementia.

As I said, the findings are being published at an event in December. Participants will be invited as well as professionals. They also intend to send participants the findings as well and are working on the design of that – and yes, they will involve people with dementia in the design…….so

Watch this space!

At least the fluffy blue sky had returned as I trundled back home after another exhausting day trying to take in information…..

 

A celebration of success……..

After a weekend of nothingness following a chaotic week last week, I started off this mega busy week in Bradford yesterday …..very long blog but sooo much to say…….🙄

We were there to celebrate the incredible hard work of the last 3 years of Dr Sahdia Parveen and her amazingly, revealing and successful study of Caregiving Hope. This study was looking at how willing and prepared people are and obliged they feel to care for those closest to them when diagnosed with dementia……

Sahdia’s success has come about through her hard work, energy and being mega organised. We’ve been with her all the way as Alzheimers Society Research Network Monitors – Me, Sandra and Htay have been with Sahdia for the whole study so how wonderful to share the end event with her as well…..

Because I’d had such a busy week last week I was late sorting out stuff for this week. So Sunday morning I suddenly had a panic as the main admin people at Bradford had booked me the wrong train ticket. I’d asked for an ‘Anytime Short Journey’ ticket and they’d booked me an ‘Off Peak’…😳😳😳….. I needed to travel before off peak time. When Sahdia contacted them Sunday they implied the ticket would be fine – I knew it wouldn’t..and it wasn’t……so they cost Sahdia far more from her budget than they needed. That’s why I always like to book my own, but this time they insisted for some reason……🙈

Anyway, the day started off well with the most glorious 30 mins sunrise….

Both the taxi man and me were just mesmerised……

30 minutes of glorious heaven went out with the blink of an eye and turned to dull grey raininess before my eyes………for those that didn’t look out they missed a wondrous sight…

Sandra was meeting me at Bradford station and we txt each other updates on our respective journeys…..having met, we trundled up the steep hill to the Uni to find Sahdia had everything all ready!! She’d been up since 5am, such was her excitement for her big day…we were leading the workshops in the afternoon. My one was “Living with Dementia” and Prof Jan would help and transcribe for me……

Then suddenly……the fire alarm went off 😳🤯 ……..and I just panicked, as I do, not knowing what to do, where to go…….we saw people in orange jackets waving at us outside…..so decided we’d better leave the building 😂……it was a test but a timed test…..we failed miserably….

The lovely Ripaljeet joined us……followed by Htay….

The room began to fill up…….with carers, who’d been part of the project and professionals and some who had a dual role…… everyone had been asked if they minded their photos being taken and all agreed…..

Prof Jan started off the event….welcoming everyone and saying how the next stage is for our thinking today about what 3 interventions would make a difference for Carers……

She said she was the ‘warm up act’ 😂…….

Jan spoke about the Centre for applied studies in Dementia Studies…..they not only do research but work with Gp’s, Care Homes, Hospices and a whole range of other activities…..

Dementia is a family affair” – Jan said…..family members provide a huge part as opposed to services that in comparison offer little….

Tom Kitwood left an amazing legacy to Bradford ……..Tom’s theory was one of relationships……

Sahdia’s project has been funded by the Alzheimers Society and Siobhan was here today representing the society…..Sahdia thanked all of us who have worked with her on the project as studies don’t come about from one persons input…..

Amazingly ethics won’t allow her to name us to the audience 🙈……

Sahdia has been a carer herself and health professionals often assume that carers are willing and prepared to provide care…..South Asians often ‘feel’ obligated’ to look after their own….but are they willing and are they prepared?  do they know how to access services and provide practical and emotional support.? Those willing may not know how to care.

This was the whole aim of the study…..is there a link between between, obligation willingness and preparedness to the carers outcomes?

They aimed to recruite over 300 but they recruited over 700, which was astounding…..the numbers were almost equal between white British and south Asian carers….

White British perceived they had less family support than south Asian but when it was measured, it was almost the same….south Asian felt more obliged, white British felt more willing….interesting finding…….

They gave the carers cameras to take photos of what helped them care….and at what point..

There is no word for dementia in the South Asian community and so the study referred to it as memory problems, but then the carers struggled to understand the different issues that affected their loved one that also come with dementia….

The carers took amazing photos

She asked why one carer painted their door yellow and red – it was to enable the person with dementia to go out on their own and know which was their house when they came back. When asked how they were coping, they would say they weren’t, but the photos allowed their coping strategies to shine out without them even realising how inventive they were being…..

The preparedness for decisions around residential care was fascinating between white British and and British south Asian carers…..

White British expected the person to move into a care home, whereas for the British south Asian carers it was far more complex – once they’d got over the cultural stigma associated with moving to a care home, it proved difficult to find care homes that adequately recognised their cultural needs, language, etc…..

Carers often say..’never, never will I allow them to go into a care home’…..but once difficulties arose and dementia progressed, views changed…..

Sahdia also ran alongside the main study, a study for future carers….those who weren’t current carers….the method was through a one off online survey and focus groups….they received over 1200 people instead of their low target of a couple of hundred….amazing…..more fascinating findings……..many had unrealistic expectations and thought there were wonderful services already in place……😳…..

Older members of the South Asian community were prepared to go into care homes, but the younger age group said ‘no way’ but had unrealistic expectations of what ‘caring’ entailed…

I could have written soooooo much more, so much came out of the study……..but this blog would have had to be several blogs as it would have been so long…..and I simply couldn’t type quick enough!!

Preparedness seems to be the key to carers outcomes…..so preparedness is what Sahdia will focus on next. What should be in place to enable carers to care and that’s where our workshops will come in this afternoon….to come up with the top 3 topics which would enable people to feel prepared to care

The questions from the audience followed…..including the existence of South Asian Care Homes. No one knew of any, but one person said how they didn’t necessarily need their own homes, they needed to be accepted in existing homes with knowleable staff in the cultural  differences…

It was then our turn as Research Network monitors to give a brief talk about our role….as critical friends of Sahdia…..

Sandra joined the Network exactly at the same time as me. Sandra was followed by me and Htay – we all had different stories and different reasons for being there…..it’s personal stories that make the value of research come alive….one thing I said was:

The academic brings their professional expertise, we bring our expert by experience expertise and together we make a winning formula for success.”

After lunch and much chat and meeting new people, we broke into workshops – 8 workshops that are going to create a support package for carers……

Me and Prof Jan were leading the ‘Living with Dementia’ table. So many things came out……the difficulty in getting diagnosis………the importance of talking to others……responsibility to be signposted….’we become compulsive liars’ to enable people with dementia to accept help, said one…..the pressure of being a carer…..of not knowing what they don’t know……the need for education in society and in healthcare professionals……

One person gave an example of her mum being excluded from the church committees when they knew she had dementia, which upset all of us…..they thought she was no longer capable……😔….I said they need to go to the church and explain how that exclusion was soooo wrong………and why…….

Why are we at the bottom of the pile for support and service…….? I said, We’re the easy option to be forgotten because we forget and carers are so busy caring they don’t have the energy……

Soo good Jan wrote notes as I hardly typed anything – that’s how good the conversation was and I had to concentrate……..we spoke for an hour and could have gone on for hours…

Each group feedback their finding……….I was defitely running on empty and my typing stopped…

But…….what am amazing day…….meeting amazing people once more……listening, sharing and laughing together …….the perfect combination…

Sahdia should be so proud of her study…..so proud of today…….and so proud of the informative magic book  published from the findings….

The Friendships from Dementia…Poem…..

Raucous laughter

Hugs galore

Greetings like old friends

Sad no more

 

Talking about anything

Personal, this and that

Sharing secrets

Amongst the chat

 

No need for Time

To kindle this friendship

An instant bond

Our very own kinship

 

Who are these people

These three dear friends

Not long ago were strangers

Now dementia has brought them

 

together like contented bookends….

 

You can hear me reading it on Dementia Diaries…….And find out what brought me to write it….

https://dementiadiaries.org/entry/12915/a-poem-that-came-out-of-brecon

A Trundle to support a Playmate……..

Yesterday I ventured on a long journey to Brecon, in Wales. You may think why, after getting back at 8pm the night before, would I then get up at silly o’clock the next day and travel all over again? Well…..this was for special people…..to support my playmates, other people with dementia, starting up a new peer support group like my Minds and Voices……I’ll do anything for playmates……

Before I start the blog I’m going to ramble for a bit, explaining the importance of peer support to me….

When I was diagnosed, I was the last person on the planet to join social groups- I wasn’t a sociable person, I liked my own company. Sports clubs, yes….I played every sport imaginable but not the social side of things……however when dementia turned up on my doorstep, I felt so alone, so isolated, as though I was the only person with this dreadful future hanging over me…..

I remember my first visit to Minds and Voices….it didn’t have a name back then and met in a small back street café – the story’s in my book. I remember the fear I felt and anxious knot in my stomach as I didn’t know what to expect when I opened that door….. All I knew was I needed something. I needed people in my position to run things past. I would never have thought peer support would have been for me but it’s been my lifeline.

Many friendships evolve with time, well time is one thing we don’t have. Our friendships seem to evolve immediately. Put me in a room with people with dementia and they’re instantly my family, sounds weird I know. But the one connection we have is dementia, nothing else matters.
We don’t judge, we don’t criticise, we don’t discriminate. We all have dementia. That cruel disease has brought me the gift of meeting people I would never have met in any other circumstances. Wonderful people, all there for one another with that common denominator………they’re very special. And for those who are reluctant to join groups, I’d simply say, give it a try. You’ll never know what gems of people are just waiting for you and need you as much as you might need them…

End of ramble, back to my blog…..

I’d got home so late the night before that I had to hope that the organised me had everything ready as my batteries were well and truly dead after a very long but wonderful day previously.

The morning came and I just picked everything up as normal in the hope it was all there. I was on automatic. The taxi arrived, the first train arrived, I jumped on the second train to Manchester in Hull (slight exaggeration there🥴)….well I had my tickets in my pocket when the guard asked for them, so that was a relief.

It was another wonderful sky across the Humber

The adorable Rachel Niblock, from Innovations had asked if I would support playmate Frances at the launch of her much needed peer support group in Brecon. Frances despately wanted her own group of playmates and since there wasn’t one, she decided, with the help of Rachel, to start her own. Playmate Dory had done the same in Wales. She’d turned up week after week in the local pub and been alone, then suddenly one by one, playmates started to join her……wonderful and all credit to Dory for not giving up.

Seeing as it Rachel organising things, I had no worries. I didn’t even print pictures and havn’t a clue where I’m going. I’m just following Rachels detailed instructions – that’s how much I trust all at Innovations. However, I’d forgotten that the time I was travelling would be rush hour and I was firmly squashed with all the other sardines on the Manchester train…..more sardines prised themselves in at each station ..the woman next to me amazingly found elbow room to crochet and suddenly let out a gasp….she’d gone wrong…..unravelled it, only to let out another sigh….I simply said, “was it right after all?” And she laughed and nodded…..at least they were smiley sardines😊

I’ll stop waffling now or this blog will go on forever!

Rachel picked me up at Hereford station as planned along with Dory and the adorable Megan…my new best friend….

We back to her little haven lodge in the most stunning area, had a cuppa soup so we wouldn’t make a mess down our clothes 🤣….and then they took me to my B&B just up the hill……and wow, what a view from my room…….

After I’d got myself sorted, we made our way into Brecon to the Wonky Green Book shop called The Hours, with the loveliest of smiley people and a display of my books……they’ve been nominated for the UK’s best small shop………!!!!! They find

out in November if they’ve won……..🤞an independent book shop with a wonderful little café at the back……

Frances arrived and another piccie

The plan was for Dory and Frances to interview me about my book, which I was soooo looking forward to…….

We took our places and the seats laid out in the book shop began to fill up………Rachel had decided to record it for Dementia Diaries, so as soon as the link appears I’ll publish it…..

Rachel introduced us and Frances started off by saying why she needed to set up “Like Minded People……..” ……Frances felt sad that she didn’t have her own group…….it was reading my book and meeting Dory that made her realise she wasn’t alone.
She asked Nicky and Leigh if she could use The Hours coffee shop to start a group and they kindly agreed.

We talked about how I wrote the book, how TIME has taken on a different meaning with dementia. Time and nature have become so important to me. Taking time to see the simplest of things and appreciate their beauty. Many people spend their time wishing for the weekend, wishing for tomorrow, wishing their lives away and miss the small moments of magic all around them…..whereas I enjoy today, the magical small beauties and if today is a bad day, then tomorrow may be better…..
I read 2 passages from my book ending with the Billy paragraph before we all took questions from the audience. People were so kind and there was much raucous laughter, tears and silence as we spoke…we made a great ‘Three Amigos’ or ‘3 wise monkeys……’ 😂 and it was because we were three that it was so special…..

What a wonderful time we had. I signed books afterwards and answered more questions before people drifted off and we waited to see if anyone would attend the first meeting of Frances’s group. – even if it’s just the 3 of us, the word will get round as the audience talks about it outside to others, as we all spoke about the importance of this special friendship created when part of a DEEP group……..

Time for one last piccie with Nicky and Leigh before we left…

I was totally exhausted when I got back to my B&B with the biggest bed in the world……but wouldn’t have missed today for anything…….

Silly o’clock trundle to London……..

A long blog – sorry!….but so much to report back ………

Yesterday I was up before the birds for an early morning trundle to London. Autumn really has arrived…..the dark mornings, although it was before 5am when I got up 🙄, and very chilly – even the heating was still fast asleep.

The taxi driver arrived at 05.40 to take me to the station for the first train of the day. We both had noticed how the town cows were no longer roaming the Westwood 😔……

The first train of the day is also the only train of the day to go direct to London, so I could snuggle down in my seat and watch the world wake up…..the beauty of early morning autumn trundles is watching the sky come alive….❤️

As we trundled towards Doncaster new lakes appeared as rivers had overflowed, fields flooded and land deluged by the recent heavy rain falls…….livestock huddle together waiting for the farmer to come and rescue them ……..the sunrise was stunning but we’d turned the corner to head south and I was now at the wrong side of the carriage 🙄

I’d been asked many moons ago to speak at an event organised by Camilla Trimble from the Oustanding Society.

Camilla set up the society in 2016 when the residential care home that she owned in Dorset received its first outstanding rating by the Care Quality Commission.

After the initial euphoria had abated she was out walking her dog and wanted to try and do something positive with this rating and to bring together other providers who had gained this rating to share information and disseminate best practice. So the society was born that now meets twice a year and is supported by Care England.

They initially put me down to speak in the afternoon, but I’m much better at events like this in a morning so they kindly asked Jeremy Hughes if he would move around slightly so I could speak in the morning – thankfully he agreed..

Once in London the venue was on a route I knew well near Euston. They had offered for someone to meet me, but unless I know and trust that person I prefer to make it alone. Then I don’t have the worry of them not turning up, not finding me etc. That way I only have myself to worry about. It was in the Skill for Care offices and smiley people greeted me.

Zoe, who would be introducing me got me a cuppa. She owns a care home in the south. Everyone here is from somewhere which has the ‘Outstanding’ rating, some from Learning disability homes, which was good to see. The room was filling up nicely with people from all over the country and the photographer kindly took a piccie of me and Camilla – can’t remember who the man was…🙈…but he was very nice….

The fire alarm then went off…..😳😳🙈🙈🙈🤯🤯🤯 but my hearing aids took away the intensity and pain, but it still didn’t stop me being agitated until someone said it was a test and it became silent again…..😶

It started with Camilla saying a few words about housekeeping etc….some were still travelling and trains for some were delayed…..😇 not mine 😇

Avnish Goyal, the Chair of Care England, was the first speaker. He started by congratulating all those present for being Outstanding Homes. He spoke about the excellence in austerity…how:

social care in still in the shadows of Health Care”

Social care is broken and Health care dominates ‘Integration is a myth”

He brought the audience into the discussion. They were asked about the system for commissioning for quality – e.g. is it fair for commissioning to be done on price rather than quality…….?

Surprise surprise, once again, even in this sector is a postcode lottery….from county to county differs. Lack of consistency once again.

Those that spoke revealed that Commissioners are only interested in price and ignore quality – this shocked me but didn’t surprise me. 😔

Not every Commissioners seem to appreciate a care home in their county that’s given an Outstanding rating. One said…“It seems an embarrasment – we’re not trying to dumb down other homes, we want to share best practice” 

It was nice to see “Risk Aware, not Risk averse” on one slide

It was fascinating to hear their challenges…

What does Outstanding look like? – many people may have totally diferent perceptions…

Is it fair that the baseline goes up for them to get their second Outstanding? Again a fascinating discussion, especially around Innovation and the meaning in that setting. If the ‘care’ is wonderful and every resident and every family member loves it, yet it doesn’t meet ‘innovation’ criteria for the CQC then it doesn’t meet that bit….Innovation is one thing their measured on and certainly isn’t all about technology in my opinion.

The new CQC person, a speaker this afternoon, that I’ll miss, will hopefully get a grilling about all this discontent and inconsistency……..

There were some shocking stories.

There were so many fab quotes I couldn’t type enough, but this one said it all……

We’re not box ticking here, we’re looking after people” said one person.

Avnish wrote an article called Outstanding – ‘Holy Grail or poisoned chalice” – another interesting and unexpected discussion.
Many managers suddenly get offers of higher wages elsewhere, but one wonderfully said that ‘Managers’ don’t get the ‘Outstanding’, the team does”……..perfect….

He asked ‘Is nationalising social care the answer’ – he said no, gave some valid reason but including, we will still have to fund care…….

He ended with a slide showing ‘what would my mum like’ – since his mum entered the home, it’s helped him see what’s important.

Fabulous talk that wasn’t ‘a talk’ as it involved the audience so much in discussion………and really interesting viewpoints …..

James Rycroft –– another founder member of the Outstanding Society – then introduced the next speaker, Rob, from Skills for care, who provided the venue and continue to support them and gave an update on their work..

After break it was my turn…….they were so kind in their applause at the end…….one thing I said:

“If someone is sat with food in front of them untouched. Is it because they can’t see it because you’ve put it on the wrong colour plate? If it because they don’t feel hungry? Is it because they’ve forgotten how to eat? Is it because the food on the plate is too complicated. Is the plate the wrong shape – I prefer to eat out of a bowl so I don’t get in a pickle or to eat finger food.”

Jeremy Hughes was after me…he is currently the Chief Exe of the Alzheimers Society but is due to step down soon.He’s been there for 10 years and simply feels it’s time to do something different in dementia…….

He spoke of the 5 Dementia Statements….they were written by people affected dementia. They wanted to encapsulate what was important to people with dementia. They all start with:

We have the right to…….” Now acknowledging that all people affected with dementia are important – the person and those around them. Just because you have dementia doesn’t mean we don’t have entitlement.

Not providing social care is costing 2.4 Billion….”

Connection with the local community is important for Care Homes to consider”……he suggested they develop their care homes into community resources……..breaking the fear of care homes by opening up to the community……
People with dementia shouldn’t be blue lighted into hospital from Care Homes where there is no Nursing…..should more Care homes become Nursing Homes to enable a reduction in hospitalisation…….that sparked debate….

Technology shouldn’t replace personal connection…..

Some very important points were mentioned by Jeremy, especially stressing the importance of Care Homes taking part in research to allow those in the later stages to have a voice.

Over lunch and some lovely chats and hugs, it was time for me to leave them.

I trundled my way for the last bit of the Young Dementia UK meeting, where I would have been anyway if I hadn’t been with the lovely people this morning. However, when I got there, my batteries were running down….and I found I was typing gobbledegook so decided simply to sit and listen…not like me at all……..so sadly no blog, no piccies….totally useless……. 🙄 but it was lovely Simply getting my hugs and seeing everyone…….before finally heading home……..

Another wonderfully interesting day……..