Category Archives: Education

One advantage of Zoom…..

Lockdown has in the main, been a bit of a bummer, but it’s also had many positives too. It’s given us time to just be, time to appreciate what’s around us and to question what’s important in our lives.

It’s also opened up the world to us in a very different way – via Zoom. I’ve spoken to Canadian students and a group of people from India connected to their health service – neither of which would have been in my grasp if it hadn’t have been for Zoom technology. I think the lockdown has taught us to use technology more often to allow different worlds to meet and hopefully will continue with this as lockdown eases.

The other week I was asked to speak to another group in India – Silver Talkies, an online community for the over 55’s in India. During lockdown, online communities have come into their own, especially where the population is spread, like India.

It’s fascinating talking to other cultures. Hearing their questions, comparing their life and life here….” Silver Talkies is a multi-dimensional platform for people who are 55 plus. Our team brings you features that highlight people, passions, trends, issues, opinions and solutions for the senior generation.”

Anyway here’s their article and the recording of my talk…

A Visit from Yorkshire Ambulance…….

Last week, or was it the week before 🤔….I had a visit from Laura Williams, Dementia Project Coordinator at Yorkshire Ambulance Service NHS Trust. 

She had spoken to Minds and Voices a few weeks earlier asking questions re how the ambulance service can help people with dementia and about our experiences. Laura was soaking up all the information we gave her. She also spoke to other groups, carers groups as both sides of the story are important.

The problem for me is, I would never call an ambulance – firstly because I wouldn’t be able to use the phone, especially with them rattling off all the questions, but mainly because I wouldn’t want to go to hospital. The experience in the ambulance may be calm and friendly, but as soon as you leave their hands in hospital, you’re exposed to the chaos inside. Also, because I live alone and have dementia, there’d be a strong possibility that  hospital staff would assume I can’t cope at home alone and I’d become a proverbial bed blocker while they decided my fate…..well that’s never gonna happen if I can help it. So no hospital for me…

I’ve gone off piste slightly 🤪……what I could do for Laura was explain the other ways ambulance staff can help people with dementia. Anyway, she emailed asking if they could make a video for staff to learn from, so that was how she and her camera lady turned up on my doorstep.

They’d both had a negative Covid test so we were able to film in my Conservatory

Laura had already sent the questions ahead of time so I could prepare I my head what to say, but luckily nothing was new. I’d answered all these questions a thousand times in one situation or another, so the question itself sparks the response from my lips. It also meant I had these questions in order to write this blog, otherwise I wouldn’t have had a clue what we’d talked about by the end…..🙄

What were the early signs causing you concern, that led to diagnosis?

Why is it so important to see the person not the dementia?

What do Yorkshire Ambulance need to be mindful of when treating a person living with dementia?

Tell me why carers are so important?

Seeing the person, not the dementia, allows assumptions not to be at the forefront of their mind. If people just knew me as Wendy with dementia, they may assume I ‘can’t’ instantly instead of seeing the things I can do, the views I do have. Assumptions can do a lot of damage….

Laura then asked some general questions.

What barriers have you experienced since living with the dementia?

Describe what it is like living with dementia?

What could other people do to adjust their behaviour to make life easier for you and other people living with dementia?

For the last question above I would have spoken about the importance of TIME and PATIENCE. We need time to think, time to reply. People tend to fill the silences which just confuse us more. Don’t be afraid of silence, we’re just thinking what to say, trying to put the words in the right order in our head. So for this you need patience.

I’m sure we added a few questions onto the end, which simply came out of the conversation, but they’re lost in my head now. It will be interesting to see the video when it’s complete to see what they were. One last piccie of me and Laura……

It’s good that Yorkshire ambulance are taking the trouble to find out more about people with dementia, after all, we rarely have a need for their services due to dementia, but due to another condition, which dementia simply adds another element to their visit and if not understood could lead to a traumatic experience for both parties….

We need help from Audiologists….

The other week me, Agnes, George and Dory were invited to talk to an audience of audiologists. We’d been invited by Sarah Bant, Principal Clinical Scientist & Lead for Clinical Improvement (Adult Audiology) – long badge needed!!

We wanted to explain the difficulties of having hyperacusis and coming out of lockdown, but also the complexities of having hyperacusis along with dementia, which very few audiologists understand.

It was playmate Agnes who first alerted us all to the existence of hyperacusis. It simply means a sensitivity to noise, just like children with autism often have, but with the quirks of dementia thrown in 🙄

You can download her Talking Sense booklet to find out more….either on audio..

https://www.dementiacentre.com/resources/knowledge-hub/audio-books/talking-sense-audiobook

Or a copy of the booklet

I was diagnosed a couple of years ago I think, you can read all about my wonderful audiologist and her explanation of the issues on a previous blog

We’re not necessarily going deaf, it’s just certain tones of noise physically rattle our brains. This is where the trouble starts though, as Agnes and Dory havn’t been able to get help even though they’ve been diagnosed with hyperacusis as they have perfect hearing. Whereas me and George both have hearing aids which are programmed to filter out the sounds we can’t tolerate.

So back to the conference. …….we need audiologists to help us cope with coming out of lockdown. We’ve been wrapped in a quiet bubble for so long that going back into busy street and cities will be difficult for everyone, but if hyperacusis is tagging along it will be even harder

I emailed my audiologist asking  if there’s a way of calibrating my aids (not sure if that’s the right word, but fine tuning them), to reduce the amplication of sound whilst still keeping out the tones that physically hurt and distress me?

Sadly her out of office came back saying she was away until the middle of April, so I’ll have to be patient 🙄

This would help me gently get used to the noise of traffic again. 

We all have that fear of sensory overload once lockdown ends. Some are saying they like living in their silent bubble now, I do, but I also like travelling on the trains and buses so need to find a way to get round all this…

Sooooo few audiologists understand the complexities of hyperacusis and dementia, that many playmates are fobbed off saying there’s nothing they can do to help. But there is if only they took the time to listen.

At the end, Sarah asked us what we’d like to say to all the audiologists….I said something like:

We need you to give us, the experts by experience,  time to explain the issues we have so that you can then use your expertise to solve the problems”

Four Amigos go on film…

It turns out that, for some unknown reason, known only to WordPress, some people including myself 😳, didn’t get this blog via email on Friday so I’m trying again today to see what happens. Apologies to those who actually did get it 🙏

We’ve called ourselves the 4 amigos for want of a better title. It was George’s idea. The 3 of them had joined me in a couple of zoom calls to help with the writing of my book and it developed from there. We realised how rich our conversations were, how they could help others but also professionals to understand dementia better.

So we decided to record weekly videos of us talking about this that and everything. George is in charge of all the techy stuff as the rest of us wouldn’t know where to start. Although Gail does lots of You Tube videos demonstrating her crafting so she’s second in line and then me and Dory are somewhere miles behind 🤣

I’ll try and post them every Friday…..

Anyway our first video is simply about us as an introduction. What we did in our former lives and when we were diagnosed. Hope you enjoy ……Meet Gail, Dory, George and me……the 4 amigos…..

A weekly video from me and my playmates…….

We’ve called ourselves the 4 amaigos for want of a better title. It was George’s idea. The 3 of them had joined me in a couple of zoom calls to help with the writing of my book and it developed from there. We realised how rich our conversations were, how they could help others but also professionals to understand dementia better.

So we decided to record weekly videos of us talking about this that and everything. George is in charge of all the techy stuff as the rest of us wouldn’t know where to start. Although Gail does lots of You Tube videos demonstrating her crafting so she’s second in line and then me and Dory are somewhere miles behind 🤣

I’ll try and post them every Friday…..

Anyway our first video is simply about us as an introduction. What we did in our former lives and when we were diagnosed. Hope you enjoy ……Meet Gail, Dory, George and me……the 4 amigos…..

A NEW Course and a Long Shot…..

So I know this is a long shot, but I thought I might as well try, nothing to lose…..

We’ve been trying for ever and a day to get more support for people with dementia in my own county, East Yorkshire, especially for those diagnosed in the last few years.  Well finally we’re putting on a course the same as we did at Minds and Voices across the border in York, a ‘Good Life with Dementia”. 

Obviously due to Covid, it can’t be in person bit we’ll be running the 7 week course via Zoom starting in March, with the hope of the attendees forming their own group at the end of it. 

Because I live their I can be one of the Tutors along with Bob and  along with playmates Bob and Ahmad and our trust enabler Damian. 

Once again, we need to find the participants. We’re hoping the Memory Service will help us, and the local Research team who we all know. But sometimes this just doesn’t work, especially in these strange times where face to face consultations aren’t happening.

So this is where my blog comes in. If only 1 person sees this and lives in my area it would be wonderful or if anyone knows anyone that they could send it to, that would also be wonderful. But they must live in my area as the East Riding is funding it.

Just like at Minds and Voices, we’ll be talking about emotional and practical support, relationships, research and any other topics the attendees wish to bring up. 

I know I sooo wish I’d had something like this when I was diagnosed, so I just hope people are brave enough to come forward. Their Carers are welcome too, although primarily it is for the person with dementia, but their supporters would learn an awful lot just by listening.

So here’s the flyer that’s been put together. As I said I know it’s a long shot but fingers crossed it reaches someone who needs help and who better to talk and listen to than people in the same boat as them…..peer support at its finest

A Dementia Strategy that comes from our own heart……Our hearts

For the last few months at my weekly Zoom meeting of me and my playmates at York Minds and Voices, we’ve spent a portion of the time putting together our own Dementia Strategy.

For so long Organsiations, Health and Local Commissioners, Councils,  have been putting together a Dementia Strategy that does not or rarely meets our needs. It’s often many pages long, making it a prime target for sitting on a shelf  in a back office somewhere redundant of use. The outcomes are rarely achieved and often unachievable and simply not what we need. 

Whether or not you have dementia, no one likes to have a live document which is heavy in text, fancy words and light in deliverables.

Well, we got fed up of all the jargon that was being used to make those decision makers  feel good as though they’d ticked a box – i.e. they had a strategy….but did anyone read it?

We’ve got ours set out simply and to the point:

The Issue, the Examples and we’ve even given the Solutions…..

We’ve broken it down into 4 sections:

Before Diagnosis

At the Time of Diagnosis

Post Diagnosis

The Future

if York City Council at least don’t take note of it, then we might boycot their strategy. They’re about to produce one themselves and we’ve sent them ours……how much will they take note of? 

How many Commissioners will compare our Strategy with theirs?

How many organisations will look at our strategy and change theirs?

Only time will tell.

Any way here’s the link if you’re interested in seeing what WE think should be our strategy…..

A New Website for and by people with dementia…..

I’m so delighted that our website has finally come to fruition. We’ve been working on it through the whole of lockdown and yesterday it became live……it’s aimed at people living with dementia to either contribute tips and strategies of their own – solutions to problems that dementia has thrown at them, but also for others to look at what others have done in the same situation. Please take a look….there are contributions from many playmates.

HUGE thanks to our able enabler Philly Hare for making this possible 😍 Here was the gumf release yesterday from Innovations in Dementia….

We are delighted to be launching “Tip-Share” on Monday 7 December 2020. The link is  www.dementiatip-share.org.uk

This new website offers people with dementia an easy way to source and share Tips that will help them in their everyday lives – especially (but not only) in the time of the pandemic. All the Tips are contributed by people with dementia. The project demonstrates their resilience, wisdom and adaptability in coming up with their own strategies to ‘outmaneuver dementia’.

The Tip-Share project was made possible through uplift funding from the National Lottery Community Fund for projects during the pandemic.

We already haveover 600 Tips, which cover 9 themes: 

The coronavirus situation

Life at home

Life outside home

Emotional and family life

Friendships and peer support

Connecting and communicating

Money and legal matters

Health issues and symptoms

Work paid and unpaid

With the help of our advisors, George Rook and Dr Wendy Mitchell (both living with dementia), we have worked very hard to ensure that the new website is as accessible as it can possibly be for people with dementia.

They can look though the Tips, send in their own, and even request new Tips on issues they are grappling with. We hope that helplines, dementia workers, friends and families will publicise the website so that the people they support know about it.

For further information contact philly@myid.org.uk

My head feeling like a badly tuned radio…..

I wrote this last Thursday as I sat waiting for my partner in writing, Anna, to ping me a Whatsapp to say she was ready to start for the day…..a project underway that will be revealed at a later date….It was 09.30 am and I’d been up as usual at 06.45 but had had an erratic start to the day, my head all over the place

The morning didn’t start off well….I didn’t feel quite right when I got up, having to think extra hard ‘what was next’…my head unclear, thoughts jumping around fighting to be first instead of taking their turn, forming an orderly queue…like an old fashion transistor radio not quite tuned perfectly, many stations competing for my attention 

The pile of washing on the floor must mean I’d decided to wash, so I had my shower first, as I always include the morning towel. Shower over, I picked up the washing, headed downstairs into the conservatory where the washing machine lives and immediately was distracted by the sunrise. I knocked over the tub of washing pearls, scattering like seeds all over the carpet but remember simply thinking how nice they smelt. Will deal with the mess later….I assume I put the liquid and conditioner in the machine as I switched it on, the machine lighting up ready to start and telling me 1hr 02 mins – clicked start and the process began ….

Went upstairs for my camera still distracted by the sky outside, its’ reddy pink glow fading with each minute I was taking and noticed the towel lying there forgotten…thoughts still jumping around erratically in my head, I couldn’t think straight…but I knew I needed to get out for my early morning walk…

I was stumbling around instead of my limbs working in unison, well as unison as they ever are 🙄. They too as erratic as my brain today. I kept telling myself, my morning walk would calm me….

Back downstairs, coat on, orange gloves with hotties inside – must have placed them ready last night. And finally outside into the fresh air, trying to distract the jumble in my head as a mum distracts arguing children….

As I stepped outside, I could feel the calmness of the outside space starting to work it’s magic and I went about my usual walk….. snapping at scenes that caught my eye, the sunrise fading, but still wisps of colour streaked across the sky….

An hour later and I stepped back inside to start off my daily routine, hopefully with a clearer head. Flicked the kettle on and went to take the myriad of morning tablets….a moments hesitation, as the next full compartment said ‘Wednesday’…..I looked at my phone…

Thursday 5th November “ lit up the screen…..I’d forgotten to take my tablets yesterday 🙈…maybe that was the culprit for the jumping thoughts and clumsy body today…but I don’t remember feeling like this before and I’ve certainly forgotten my tablets on many occasions …….another change to surface or maybe it’s just going to simply be one of those discombobulated days….

But when the ping of my phone signalled Anna’s arrival an hour later, it was still a jumbled mess and I didn’t know how much use I’d be. But amazingly…..my fingers were fine….as though detached from my body, wired to a different brain and the jumbled me watched as my fingers typed eloquently, thank goodness. And when Sarah came later, she could see the jumbled chaos in my brain had been transferred to my body and voice. When we walked to the pond to give the ducks an extra treat, my gait felt jumbled too. Consciously having to think how to walk, My body  felt jerky and unwilling….but the ducks were happy at least to see us…

I came back home, after saying goodbye to Sarah, and started jotting my notes down again, my head still a jumble, my fingers clear and concise. I told Anna I needed to close my eyes a while, maybe to let the riot in my head diffuse and calm down…..

An hour later, I opened my eyes, sleep having evaded me, I knew the riot was going to continue, so sat up in bed and began to type something calming about pottering in my garden…although my fingers behaved and produce some calming prose, my head refused to surrender, the fractious armies continuing to do battle. I gave in. 

The evening passed by in a haze and eventually I must have gone to bed. Hopefully sleep will sort me out…..

The next morning I woke and paused before moving. Had the battle ceased inside my head? Or were they just sleeping too….I felt calm, my head felt clear. I’m always saying to others, “If today is a bad day, tomorrow may be better”…..and, thankfully, this time it was….

Dementia is so strange in the way it affects us. A new feeling yesterday which I hope isn’t going to take up residence…….time for my early morning walk…..but more of that tomorrow…