The end of Virtual cuppas…for now….

For the last 3 weeks, I’ve been holding “Virtual Cuppas with Wendy” twice a week.

 It’s weird, as I love doing them, really do love just meeting people I’ve only known by a Twitter handle or a name that’s floated around on social media, but it’s also become very stressful in an unexpected sort of way…

The first couple were no problem, it was new, a new adventure. A new way to keep connected in this strange world…a different sudoku….

But as time went on the stress began to take hold. Different people began helping me and it’s that inconsistency that also became stressful, not knowing who will be there with me and not knowing who will be joining…having different people…I know that must sound strange…but it began to be overwhelming….

Innovations in Dementia have been wonderful in supporting me and I didn’t expect the same people to be free each week, but I also didn’t expect the inconsistency to affect me in the way it did….making me feel anxious when logging onto a new session…

The stress of not wanting to miss out playmates as ‘guest playmate’ was also on my mind – not wanting to offend people….Zoom is also, simply, exhausting…having to concentrate so hard at listening. At the end I close my eyes and let the mish mash in my head settle again.

I can’t type and zoom at the same time so all these magic moments have been lost to me. It was suggested I listen to the recording and write afterwards and I did try, but it sadly didn’t work. There was none of the ‘in the moment’ atmosphere and feeling. I was just listening to words, so would simply be typing words without the feeling….again strange and unexpected. So all these moments will be lost through not having a blog, but they were still wonderful at the time even though I have no recollection of the detail.

We’re all having to adapt and change the way we do things and we’re all, I expect, learning new things about ourselves. So now I’ll now have to adapt again and find something else to fill my time, to keep my brain working..

My last session will almost be over by the time this blog gets released. This weeks have been on Finding Time for yourself and Discovering Technology. Technology is the one golden light in all this chaos, enabling many of us to keep in touch…I’m so grateful that I didn’t have to learn it now…

I can’t thank Innovations enough for suggesting it to me. I really have loved doing them and wish I could do more as it’s been a lovely little adventure and can’t thank them enough for enabling me to do it, but I think I need a break for now. Who knows, in a few weeks or even sooner, maybe I’ll come back and humbly ask them again for help…..

as my lovely playmate Agnes said in Tuesdays session….:

”I’ve gone from being a ‘Human doer’ into a ‘Human Being’…..

Think I might need to ‘be’ for a while…..

So thank you to everyone who joined me, I can’t tell you how much I appreciated your company…

In the meantime, I’ll take a back seat and just listen and chip in to the ones I do join….I announced on our recent Dementia Diaries zoom get together that I was going to restrict myself to 1 a day….but as my lovely playmate Ron said, “Instead you need to say, ‘Today I will do only one’, as tomorrow you might feel different……”…quite right…

There’s a lovely one coming up next week with 2 of my lovely adorable playmates, Dory and Frances, doing a double act.

In session one Dory and Frances will do a live portrait drawing session of each other. It will be up to us to decide who is the experienced artist ….You will also be invited to bring along your paints, crayons and paper to join in….!

So fun and laughter can be guaranteed…..and I’ll have my crayons at the ready 😂🤣😂

You can take a look here….

https://www.eventbrite.co.uk/e/dory-and-frannie-how-to-survive-in-lock-down-session-one-tickets-102169130620?aff=eemailordconf&utm_campaign=order_confirm&utm_medium=email&ref=eemailordconf&utm_source=eventbrite&utm_term=viewevent

 

 

 

The PIP Verdict arrives through my letterbox……..

Not sure if you remember my PIP ordeal….I was awarded PIP 5 years ago, a few months after being diagnosed, then it was taken away from me 1 year later and the process of appealing was soul destroying so I let them win……here’s the detail from back then in 2016…

https://whichmeamitoday.wordpress.com/2016/08/11/pip-process-is-broken/

Well in the last few months I decided it was time to make a stand again and reapply. It was really the principle I was fighting for. I had sooo much support on line, some from people I’d never met, for which I was so grateful.

The first appointment, after getting myself into a state, was a ‘no show’ on their behalf, which was, once again, very stressful…..

Here’s what happened on that occasion……

https://whichmeamitoday.wordpress.com/2020/02/18/the-trauma-of-the-pip-process-once-more/

…..but my daughter rang and they immediately gave her another appointment a month later…..

Here’s what happened when someone did arrive…..

https://whichmeamitoday.wordpress.com/2020/03/11/the-next-pip-trauma-wait-arrives/

It felt a lot more positive but I knew from past experience that nothing should be taken for granted as they appear to be a law unto themselves when decisions are made….

 Bizarrely, the day I saw the postie coming up my path with a brown envelope in his hand  I clapped him through the window not knowing what he’ was delivering, but just to thank him for continuing to work…..when I saw what it was, my heart thumped again and for a few seconds just held it in my hands and stared at it…..before opening it, heart In my mouth…..and ready for another appeal, another battle……

I read it and reread it…..and this time, thankfully, they awarded me both payments without argument …just as it should be….”Feeling relieved” doesn’t express the intensity of the emotion I felt…

Makes you wonder, whether the person who denied me last time stating, I was ‘getting better’ is still employed by them….😔🤔….

It now says they won’t contact me again until 2030 so at least it’s all over, unless governments change the rules again….I can’t tell you what a relief it is to gain acknowledgment of the effect of my dementia…….and, people with dementia, once awarded, should never have to go through it again….but then that’s another battle for another time…..

  

 

A Thank You to my Village…..

Written long before the strange world invaded our lives…well, 4 or 5 weeks ago to be precise….but seems an age ago….our village Newsletter in hard copy has bitten the dust this month so those who don’t have the internet will find that a loss….I’m so lucky to live where I do, surrounded by countryside and fields, where social distancing has never been an issue….

This letter could have been written for these strange times, but the fact that it was written long before the world was transformed is a testament to it’s friendliness….

They’re always asking for contributions and for piccies to put on the cover so I emailed the editor to see if a piccie I’d taken in the village was acceptable, as they have to look right in black, and white and also wrote an article…

As well as having my piccie on the front cover

It also printed the article I wrote and here it is….

I moved to the village, I’m not sure how many years ago now, probably 2 or 3….but the reason I moved here may give some indication as to why I can’t remember.

You see, I was diagnosed with Young Onset dementia nearly 6 years ago. I used to live in the beautiful city of York and described it like ‘being on holiday and never going home’. But dementia isn’t just about memory as so many of our senses are affected as well. One of my first was my hearing. I wasn’t going deaf, but certain tones of noise physically hurt my ears, and just like children with autism, I was diagnosed with hyperacusis. So the sirens, the traffic, the continual every day noises of York began to affect me and it was vital I moved somewhere quieter.

I’d visited my daughter in there many times and was struck by the friendliness of people in the street. The automatic smiles and greetings that came my way. So it was here that I decided to move. It was a traumatic move as I hadn’t appreciated how hard it would be to get used to a new village, a new house lay out. But the friendliness of the village helped me through this without even realising it.

My neighbours are all truly wonderful at helping me when I need it, often unobtrusively, for example, taking in my weekly bins, but all this is much appreciated.

I’m quite well known in the ‘dementia world’ and often sing the praises of my little friendly village. I’ve met people on my travels around the country speaking whose eyes light up with recognistion when I say it’s name. One person even lived in the vicarage many moons ago as a child, yet I met her in the West Country.

Amazingly I’ve written a Sunday Times best seller, Somebody I Used to Know’ detailing my life before and living with dementia. I was lucky enough to be invited to the village Book Club in the Dog and Duck to talk about it and was met by such kindness and interest.

I went to the village school at the request of Chris the headmaster, and made all the pupils dementia friends one year and they’d done the most amazing forget me not display.

The village shop assistants have always been kind and helpful, especially at the post office counter where I can get in a pickle with money. But no one bats an eyelid, they just help me.

As for the village bus stop….well I call the village bus, ‘The NHS on Wheels’ as it serves to help people socialise, to catch up on the news and should never be lost. I love catching our village bus and seeing all the smiles, the cheery hellos and conversations that take place on that short ride into town.

You may not realise but  the village has been filmed many times as TV companies come to interview me and the National newspapers write articles about me which leads to many enquiries from strangers asking where I live as they think it’s so beautiful.

We often don’t realise that the place we live has so much beauty but trust me it has.

All these things go to making my village Dementia Friendly without even realising it. But I like to think of it as ‘People Friendly’ and moving here was one of the best moves I made. Thank you for making me fell so welcome and part of this wonderful community….

Wendy

 

When……Poem…

I know I usually try and be upbeat…but this poem was written after hearing the heartbreaking news that one of my playmates from Minds and Voices, Rita,  had taken her last breathe…. just states my greatest fear at the mo and the greatest fear of many of my playmates living with dementia…..and every now and then it whittles in my head…..so I thought, if I write it down, it might not appear so often….

When this is all over

Will we remember what to do?

When we’re allowed to trundle

When we’re allowed to crowd…..

 

When this is all over

Will we be able once more

To take a simple trip

To walk into a crowded room

 

When this is all over

We’ll all need support

To discover a new normal

To discover the world once more…….

 

or will it be too late………?….sadly no one knows….

Dedicated to my lovely playmate Rita, the gorgeous lady that could light up the room with her smile……..

 

“Virtual Cuppas with Wendy” via Zoom…….

I’ve been loving ‘meeting’ people through my virtual cuppas, new friends and old. They’re open to anyone to join in, with or without a connection to dementia. We have a max of 14 people, mainly because I can’t cope with any more! and we have rules about only one person speaking at once and raising their hand or a “I want to Speak Card” or anything bright for me to see.

I’ll carry on for as long as there’s people who want to join me and they’ve all sold out so far. But you do need to book a ticket so I can keep tabs on numbers. Each has a rough theme and I try and have a guest playmate on each too…..

Another thing I found out last week on another zoom call is NOT to take piccies of the screen and publish on social media while we’re live 🙈…as this means strangers, with nothing better to do, can bomb into the meeting and disrupt it…..why on earth anyone would want to do that is beyond me, but many did as I posted a piccie on Twitter of the cast of Maggie May as we were all celebrating, what should have been, their press night in Leeds.

Yesterdays session had a theme of “Trying something new” with guest playmate George Rook. We were saying how repetition is the best way for us to learn new things. One action at a time repeated time and time again. To us it doesn’t matter if we repeat because we rarely remember, so it’s not an onerous task. George has carved some amazing whistles ….❤️…and mine was trying my hand at Flower Pressing. Such an lovely discussion, even though we had technical difficulties at the beginning. They were soon dismissed as I saw the name join us of someone I used to work with at Leeds Hospital many moons ago and I was overwhelmed that she’d taken the time to join me…

So I have another 2 sessions next week. One on Tuesday 7th at 1pm, the theme being “Taking time for me”

https://www.eventbrite.co.uk/e/web-with-wendy-session-four-tickets-101728165682

 And another on Thursday 9^th April at 11am, with “Discovering Technology” as the theme. 

https://www.eventbrite.co.uk/e/web-with-wendy-session-five-tickets-101728304096

My lovely enablers at Innovations in Dementia are making little easy to follow videos to show people how to use zoom and this link will explain how to use it on a phone

Would loved to meet people, new friends and old if you’re free……don’t forget  your cuppa!

  

A new ‘remembering, a new routine……

I think the biggest challenge so far has been to come up with a new routine with purpose to pass the time of day…..some have been successful others really havn’t….

I tried shaking my routine up on Monday, to break the monotony….BIG mistake….all I did was put the kettle on before my shower instead of after and watch BBC breakfast on my iPad upstairs instead of downstairs …..I was discombobulated for hours……😔..this change in routine confused me no end. A simple change in putting the kettle on before my shower instead of after meant, when I went back upstairs to shower I didn’t know where to start. I had to wrack my brain as I could hear the kettle boiling and that wasn’t the right noise to go with having my shower…it set me back for the rest of the day….mustn’t try that again….

Zoom ‘’get togethers’ have been my way of socially connecting with people. My regular Zoomettes meeting has always been and still is, wonderful….all women with dementia sharing laughter and tears. But many others have now been added, since travel is out of the question. But all these zooms have to be remembered over lots of crossings out on my calendar….I found that really difficult as it’s hard enough to write and read my writing. To try and write over crossings out made me feel anxious about forgetting things.

I started just putting them on my phone as reminders but then there were so many I couldn’t keep track of when they all were and started double booking 🙈…..so now set alarms and write them on my empty weekly calendar…..however even that went array yesterday as I’d put 2 of the reminders on my calendar and a different 2 on my phone 😳…it wasn’t until my alarms went off that I realised they were totally different🙈…so I had 4 yesterday which was a big mistake…..

I’ve found that two Zoom sessions a day is my max as they’re very tiring as you have to concentrate so much and by the end of the 2^nd one I’m all zoomed out. At events and in meetings you can disappear into your own world for a while however with zoom  you have to concentrate really hard to keep up with everything. But it’s certainly been an entertaining way to keep connected and meet some people I’ve only ever known as ‘virtual’ names…..and it’s our only way at the mo…

 I’ve even put ‘eating’ lunch into my new routine 😱, just to have something in that routine. I only ever ate lunch was I was at events and it was put in front of me, but now a Wensleydale cheese roll with pickle is part of my new routine between 12 and 2pm…not quite sure what I’ll do when I run out of cheese 🙄😂

I always fit in a  walk while we’re allowed and take my camera with me to capture the moments….I even post them on the village web site and I’m meeting new people on my walk who suddenly realise I’m the ‘camera lady’ which has been a nice bonus….

This ‘new remembering’, new routine, has come hard to us all. I do wonder what I’ll make of it when it all ends..🤔..it already seems odd when you see old footage on TV where people are close together, going about on public transport as we once did. Think I might find it hard to go to big events, where they’ll be so many people in close proximity and sooo much noise.

It was the topic of the ‘Virtual Cuppa with Wendy’ on Tuesday – “Facing your Fears and possible solutions”. There were 3 other playmates on the call with me and 10 others and each playmate expressed the fear of how they will be when all this is over, due to lack of normal ‘doing’. Here’s just one screen of attendees…

I said how we’ll need lots of support from our ‘able enablers’ to regain some possible skills, especially of travelling,  and if they’ve gone to find new ways of doing what we love…unless it’s too late.

I ended by saying how important it is NOT to think of the end as no one knows when that will be at the mo…could be weeks, could be months. So to help us cope, simply concentrate on one day at a time.

“Enjoy today and whatever that brings, and if today is a bad day, a stressful day, then tomorrow might be better”

AND I still adore simply sitting in silence…..

Update on my speech issues……

So last week….was it really only last week 😳🙄…..I wrote about my speech problems, caused, by what I thought at the time, by not trundling and talking all day long; through the long silences that now exist in my life because I live alone……

If you missed it you can read it here:

https://whichmeamitoday.wordpress.com/2020/03/26/an-unexpected-consequence-of-this-strange-world/

I really did think my slurred difficult speech was due to this strange world we find ourselves in….

Well yes, in part it is affecting it that way, as I struggle more with word finding, but 2 days after writing the above blog my speech returned almost back to normal waffling. More importantly, my head cleared to work out why it had all happened…..

We now think I had another mini stroke, only I wasn’t able to realise it at the time. Because I couldn’t see my nurse daughter in person, I convinced her it was due to not being out and about speaking so much. But I also realised I’d woken with the tell tale drooping face as well, but hadn’t connected them together and thought I’d just slept awkwardly on that side of my face 🙄🙈😂….

Once my brain was back in order I could fit the pieces together. According to my blog it’s only a month since I had the last mini episode in London….gosh that seems like an eternity ago now 😳…..

 You might think I should have sought medical advice…well it was the first thing my daughters said too 🙄…but in fact, a Gp surgery is out at the mo and hospital is the last place anyone wants to trouble at the moment too (well that’s my excuse😊)….

I was actually relieved it was a mini stroke and not my speech being permanently affected. After all, I’m back to waffling as normal now, so I’m rather grateful it was that.

Me and a few of my playmates have all said how our speech is more of a challenge now, word finding slower, more gaps in our sentences, so it is still a possibility that this challenge will continue. But we’re all trying to fight it through zoom calls and through recording Dementia Diaries – at least we have those options……

So worry not, but thank you for all your concerns, my silent days are hopefully far off…..fingers and toes crossed….. well I have to uncross my fingers to allow them to type……😊

Value of technology in this strange world…..

Last Thursday saw the first of my “virtual cuppa tea with Wendy” via zoom. I’d advertised it on Twitter as a way people could join me by video for a virtual cuppa of tea. The them of that session was Living alone. I have to have a limit as I can’t cope with lots of people on the screen at once. We opened it up to 15 people to join and sold all the tickets, but as usual with these things only 9 people joined me as life takes over and other priorities occur. I say ‘only’ but in fact it was perfect.

For each session I thought I’d invite a guest playmate to join me and last week it was fellow Zoomette, Dreane,  as she also lives alone.

I knew all the peoples names from Twitter but had never met them. I invited anyone to join, with or without a connection to dementia. It was lovely to see new faces as well as old. I met playmate Gail. We’d never met but we follow each other on Twitter and it was sooo nice to talk by zoom……I met people I’d never ‘met’ before which was so nice.

We all sat with our cuppas and simply chatted. The one thing I find hard is not being able to type while on zoom as the content is lost as soon as we’re finished. Must try and find a way round this…….I had my able enabler Anna, from Minds and Voices keeping order. It’s our rule that you have to put your hand up, hold up something bright, or a ‘I Want to Speak card’ to wait your turn so that no more than one person speaks at a time….it worked so well.

I’m holding 2 more this week, one today, Tuesday and one on Thursday.

If you’d like to join me for the tea break on Thursday  2nd April at 11am UK time, you’re more than welcome. There’s still a few tickets left, or there was when I last asked. Just book your place on Eventbrite by clicking the link below ..on Thursday my guest playmate is the lovely George Rook and the theme of our cuppa will be ‘Trying something new’. Apologies for my overseas friends where the time won’t be appropriate.

https://www.eventbrite.co.uk/e/web-with-wendy-session-three-trying-something-new-tickets-101184776390

Of course, me and my fellow Zoomettes have been meeting virtually every Monday for ages, long before this new world began, so I consider myself lucky to have known how to remain connected. We didn’t have to learn how to do any of this as we knew already…..how strange that people with dementia were ahead of the game…

If you’ve never used zoom, you can watch fellow playmate Frances and our able enabler Aimee from the Zoomettes on this short instruction film which will give you a starter….

https://www.youtube.com/watch?v=ilK0WAS3Kt4

I also wrote an article about ‘giving technology a go” especially during this isolating time…for the Young Dementia UK Newsletter. You can read it here if it’s of interest.

https://www.youngdementiauk.org/technology-give-it-go-wendy-mitchell?bblinkid=211603353&bbemailid=19953210&bbejrid=1418854000

 

A Different world…..Poem…

Empty lanes and empty fields

Cars sitting quiet in the street…

The sound of bird song loud and clear

Food for the soul and music to my ear……

Feels like a different world

We’re inhabiting right now

With different routines to discover

Different guidelines to follow

No greeting friends with hugs and kisses

No touch, no physical hellos

But we can still smile a smile

Still see and hear

Remember what we do still have not what we don’t……hard as it may be….

 

In this strange world…….Poem

In this strange world

That’s suddenly appeared

There’s only one thing for sure

That nature will keep on changing

It’s continuation assured

So look very carefully

At the beauty all around

The tiny things now matter

Use your eyes to see

The detail that abounds……