I wasn’t going to write a blog to begin with as first taste I didn’t like them but I did like the young people who’d invented them along with their story…..….but I soon realised, well, after my daughter said, that they weren’t what I’d envisaged and that was why. The taste, the texture was all wrong and not what I had in mind. But then a few days later, there were staring at me again, so I tried a different colour and this time I really liked them. No preconception this time…
I’d imagined, first off that they would be filled with water and the outside shell of jelly would melt in my mouth to reveal liquid….couldn’t have been more wrong…they were simply soft jelly…..
I met these lovely people ages ago, can’t remember where, although now I look at my past blogs I can see it was back in June 2019 at an event about eating and drinking, a really good and different event….you can read about here if you wish
Here’s the piccie of me and the lovely inventors….along with Lola the dog, my friend for the day….❤️
Lewis is the one on the left…
“Engineering graduate Lewis Hornby was worried about his grandmother, who lives with dementia, not drinking enough water. So the 24-year-old decided to create jelly sweets which are over 90% water to keep her hydrated which was also part of his university masters work. Lewis, who studied at the Royal College of Art, invented bite-sized liquid balls to get the fluids in her system. And the adorable granny loves them. She was filmed munching away on the brightly coloured treats and Lewis even joined in.”
Said an article in the Metro in 2018
His dedication has led to a whole team now creating and developing these bite sized ways of keeping hydrated.
They’re suitable for vegans, contain 95% water, no artificial stuff, have added electrolytes and are sugar free. More importantly they have no laxative affect, which soooo many medications do…..
Just like I don’t feel hunger as I used to, so other people with dementia, especially later down the line, fail to realise they’re thirsty, the signals in the brain don’t relay the message. Or they simply forget to drink. Because of my regular flasks of tea by my side, thirst, is one thing I don’t have a problem with unless I’m outside…🙄
Anyway…I’ve fot a feeling they’re not on general release or availability at the mo, but I may be wrong 🙄..but I think I got the opportunity to purchase some simply because I signed up to their work when I first heard about them, simply through curiosity more than anything else. Now I can see their value in many circumstances, but they’re not a cheap way to keep dehydrated, but if that isn’t a problem, well give them a go……the orange and pink ones are my favourite 😋
Me and my partner in writing, Anna Wharton, are still best buddies. She didn’t abandon me and move on after we’d finished writing my book. We have shared so much of our lives together that now it feels like we’ve known each other for decades!
All our conversations are usually by WhatsApp and last Sunday was one such occasion ….they’re usually funny haha conversations, but Anna was in a ‘deep conversation’ mode…😂🤣
Anna had been reading a book review in the Times about navigation and how vital that skill is for humans….
Many people now rely on SatNavs to find their way around. I remember, when SatNavs first came out, and being astonished at how little effort it took to drive somewhere. I also remember feeling sad at no longer needing that touch of a map, that ‘working out’ where to go…..
Our brains need to work to survive and people with dementia need to do that more than others. That old adage of ‘use it or lose it’ never more true than for people with dementia. But the article mentioned dementia as well.
Even when I’m out and about, I still print a walking map, still like to plan my journey so that I feel as though I’m in control. I have the back up of Google Maps, especially for when it’s raining and a map suddenly turns to a soggy mess, but I prefer to look at the landmarks, find the street signs. I’ve realised how quickly I forget how to do things, how dementia robs you of that skill when you’re least expecting it, sneaks behind your back and snatches it away when you’re not looking.
Exhausting to do all this in my way, but maybe this is why my ‘strategies’, my use of my brain, especially since I live alone, has meant I’m still capable, I’ve still kept dementia at arms length…..
As soon as I realised recently, that I was forgetting how to book my own train tickets on line, for example – others being kind by suggesting they book them for me….but then I needed to book one myself, I struggled….I needed to go back to me booking otherwise I’d have to rely on others to always do that for me…..so many similar situations where people are being kind. But if we stop, we forget quicker than those without dementia…
Another advantage of living alone, is because I HAVE to do things, simple things, like make a cuppa tea, that so many others allow people to do that for them….
I can no longer write consistently legibly any more – the complex task of writing a difficult process. But I still write shopping lists every day. Yes, I type all the time, but I havn’t stopped writing, as I know, even my illegible scrawls will disappear, Only I have to decipher them and it’s no big deal if I can’t but I still continue.
Used in the right way, at the right time, technology is wonderfully enabling, for instance, now I find the phone difficult, I could stop communicating with people but the technology of ZOOM enables me to keep in touch with playmates via Zoomettes, doing interviews etc. So that’s the good side of technology …. but……..
As Anna said at one point in our conversation,
“we’re just dumbing down our brains with technology”
So I’d suggest to everyone, with or without dementia to think carefully about how they use technology and whether the brain is better in some cases….”Use it or lose it”…simple as that….
Thanks to a super quick response from Apple Support – even the shop said they’d never got a replacement iPad delivered in such speedy time. It might have been due to all my lovely Twitter friends hassling Apple across the Twitter Network or they might just have been kind, I’ll never know. But all I thought when I got the email from them yesterday saying it was ready for collection was utter relief.
I lost a wonderful day yesterday, before picking it up. A day in Sheffield where we gave a live performance of Dementia Diaries. Any event would be well worth considering asking us to do a live performance as we speak the words of many people living with dementia, not just our own. All I know is, we had a fabulous time. Small audience but the quality was wonderful. I only have images left, images of smiles and laughter. Care home residents reading their poetry amongst some of the highlights. Shame I lost the detail but here’s a pic I’d of me Jacqui, Philly and Howard….
As many of you know, my ipad goes everywhere with me. Not only is it my memory, but it allows me to connect with the outside world……….
Some may see it as a luxury. I know I’m lucky to be able to have access and the ability to use the ipad, but when it’s stops working I’m devastated…….my world just seems empty. I type all my blogs at events in real time. Once I arrive home they’re complete and I only have the piccies to add. The reason I do this is to remember all the detail from these wonderful event. As soon as I leave them, the detail has already vanished from my memory, apart the the images that remain in my mind, of smiley faces, a situation, a hug…..all filled with emotion but lacking in the detail.
But my iPad is so much more. It’s my means of waking up my brain, or seeing what sort of day I’m going to have, with my morning routine of solitaire and scrabble.
The sadness and loneliness that has come over me recently when I’ve opened up my ipad and been met with a blank screen has been overwhelming as it means to me that more memories will be lost.
It’s probably the only time I panic. With a happy screen, I’m happy as I tap away recording all in front of me. The same happens when there’s a poor internet signal….the talk of 5G makes me sad as I wish everywhere had 4G first……..I always have a back up of a printed map as I got caught out with poor internet connection once and couldn’t find my way to a venue…….luckily it was the kindness of strangers that helped me.
Luckily I was with Damian when my ipad died the first time and he looked up how to fix it, otherwise I would have been lost. So much technology is being introduced, specifically for people with dementia in mind, but those clever inventing minds, have to work out ways to make it easy for us to understand how to fix these inventions when they break down, as they invariably will. Not sure what the answer is but sure their great inventive minds could come up with something.
And as I said, I’m lucky. I have people around me who can help. I have my wonderful world of Twitter who will always be there to help when things go wrong. So what of those, encouraged to use technology and have no one when it goes wrong? What if I’d been alone in the world on this occasion when my iPad died. It would have been the end of my independence which may sound extreme to some. But that’s how vital my iPad is to me. Are we encouraging people to rely too much on technology without safety nets in place?
Technology is truly wonderful and has helped me enormously through my life with dementia. It helps me on journeys, with apps of various kinds to help me find my way, the train app which tells me which platform I’ll be coming in on and which platform my connection will be leaving from; whether the train is late etc. Google maps which talk to me and tell me the way to venues.My new found friend, Alexa, which helps me get through a bad day; can put on the lights upstairs before I head to bed, reminds me of my medication. The tracker on my iPhone and iPad, which helps my daughters feel safe about my travelling and in turn helps me feel safe that they know where I am if I forget. My phone for the constant reminders of what to do when…..
My phone is wonderful, but is teeny weeny and is fine for basics, my iPad allows me to see more clearly and most of all, type.
I’m sure I’ve missed out many that I rely on daily
Technology is a wonderful thing, but when it lets you down…….well……….very sad……..
But no longer am I sad, my mood instantly lifted and I hugged my new iPad when I picked it up. On setting it up last night, I knew all would be right in the world again, once I saw Billy appear on screen…..and I gave it another hug……
Yesterday I found myself heading for Durham alongside playmate Howard and Philly. We were all coming from different directions and meeting up on a train in York.
I use to be able to get a direct train from Beverley to York but the powers that be in their wisdom decided to do away with this service. So now I have to change in Hull and wait for 30 mins for the train to York. I’d prefer going on the bus from Beverley but they also stopped the early morning service for this one too even though both were well used 🙄
Anyway a 30 min wait in Hull allows me to trundle across the road to Greggs to get a cuppa tea. You may wonder why I don’t go to Starbucks or Costa which are in the station…….well their tea is rubbish……simple😊
So the taxi turned up on a lovely fresh spring day. I got my cuppa tea and then began the slow stopping journey to York…..the sky over the Humber teasing us with promise of a nice day ahead…..
Someone came up to me on the train to say they’d read the article about me and my daughter in the Sunday Times😳 …….well on Sunday 31st, which is apparently Mothers Day, for those who get it, I’ve written an article for the Observer. The photographer came yesterday and won the prize for the most photographic equipment ever to enter my house😂 It was nice that they asked me to write my own article ☺️
I’ve been soooo tired this last week and my mojo has gone absent without leave….but it would do me good to be out and about with lovely people. I know why I’m going – to do a Dementia Diaries Live session – but can’t remember who to🙄 so I’ll have to wait for Philly to find out that bit.
Crikey, waffling or what!……..
Anyway, I got to York, and was met by Philly and we sat and had a cuppa tea before meeting Howard on the train to Durham. Philly went through why we were going.
We’re apparently visiting residents and staff at Housing 21 Extra care – independent living with 24hr care staff on site. John, the Dementia lead for the organisation, picked us up from Durham station and Vanessa Pritchard Wilkes from Twitter met us outside Bramble Hollow.
Philly got us here under false pretences as she said we’d be a small group of 10 however we walked into a lovely room of 60 staff and residents😳 from many of Housing 21’s housing courts. We just happen to be here in Bramble Hollow. What a lovely name with not a bramble in sight……
We started off by chatting and telling everyone why we were there. They started to get very excited about the fact we were doing a ‘performance’ – we told them not to get too excited as we’d forgotten our tutus🤣😂🤣
I asked how Housing 21 got it’s name – Vanessa gave the answer – because they wanted to provide care for the 21st century……
Me, Howard and Philly then did our live performance by reading diaries recorded by many people about a variety of subjects, including a lovely poem by Howard himself which they all really liked and applauded.
You might think Dementia Diaries involve writing a diary, but in fact we record whatever we want to say by ringing a magic number and speaking into a telephone. It’s sort of an answerphone where we can ramble on for a couple of minutes.
Lunch time was a liquid affair for me with a few cups of tea, but everyone else tucked into hot or cold food from their in house restaurant. I’d only taken 5 books (mainly cos I only thought there’d be a handful of people and sold them within minutes of lunch starting. But Vanessa ordered more online for those that wanted one. After lunch we sat and chatted with everyone about what sort of Diaries they could do. But they all went shy and no one wanted to give it a go.
I then asked if anyone would like to do a double act with me and suddenly volunteer hands went up and we brought the audience alive with our banter. So I had a wonderful time with 3 volunteers, Marjorie, Elaine and Sue recording a diary live with me asking them about where they lived. It was so much fun with so much laughter and engagement from the audience and so simple to do. Everyone needs a bit of encouragement and a playmate to do their first diary.
Dementia diaries is being launched as Housing 21’s new initiative which is wonderful to hear. All staff were on board and so enthusiastic to take it back to their individual places.
Many residents came up and chatted to me and Howard afterwards. Hugs were exchanged and laughter shared. It left me feeling very happy at the end of the day that we’d come into a roomful of strangers and left having made many friends.
If you live with dementia and live in the UK (sorry everyone else!) and would like to find out more, let me know and I’ll pass on your email details to Philly or Rachel. You might want to share a poem, or views on something, or just say hello and tell us your story. I’d love to hear from you, anyone living with dementia is welcome and all voices are heard.
If you’re not living with dementia and would like to volunteer to transcribe some of our ramblings, you can find out the details on the link below by clicking on the tab at the top about volunteering…..
It had been a very long day and we all yawned our way through the train journey. We found ourselves in the ‘Quiet Coach’…….mmmmm that was always going to be a challenge but we only got told of once -ha!
Philly leafy us at York and me and Howard parted company at Doncaster. My head banging, as I’m sure it would for the next 24hrs, but there was a lovely calming sun setting over the Humber..
On Sunday I went for a lovely trundle round the village. While I was out I got a txt from Sarah asking if I was ok and it reminded me to tell you of a brilliant simple free app that we now use. Sadly me thinks you might have to have iPhones to get it but maybe there’s something similar elsewhere.
It’s the Find friends app that automatically comes from Apple. (Not sure how apps get on my screen sometimes, but I’m sure that was ‘just there’)🙄
Now I’ve always been reluctant to condone GPS tracking systems for people with dementia and they can be expensive. My worst nightmare would be to have CCTV type things watching my every move at home. However, the Find friends app has proved useful for me and my daughters.
We had one episode where I was quite happily at a meeting at the local hospice, but it had overrun and then they decided to show me round the hospice. My daughters were expecting me back at 4 and at 6 I was nowhere to be seen. Someone had driven me there and when we got in the car I looked at my phone and had 13 missed calls and umpteen messages. Boy was I in trouble😳…….however now we’ve discovered the free Find friends app, they can look at the app and see exactly where I am – it even gives the address. Sarah has used it many times to check up on my whereabouts and then send me a txt saying ‘why are you in Durham’? But at least she can see where I am if I’m not where they think I am.
Obviously I have to remember to take my phone out with me and I have to have a signal, which is sometimes an impossibility in the black hole of our village, but it works 99% of the time
I’ve been asked by the lovely Penny Kirk, who I met on Twitter, to be on the panel of adjudicators for the Dementia Quality Improvement Awards this year due to take place in Leeds in May.
For the last two years, these Awards have only been open to healthcare professionals from Yorkshire & Humber. However this year colleagues in Greater Manchester, Lancashire & South Cumbria are also involved to run the “Across the Pennines” awards.
The venue is in Brewery Wharf in Leeds. I was having trouble working out whether it was within walking distance of the train station. Penny then sent me an amazing link which gives, not only step by step instructions, but also a brilliant video of how to walk from the station to the venue. What a magic idea and many more venues should follow their example as it makes it so simple to find, what would normally be, a difficult venue to find.
So now I can just play the video as I walk – result! It’s like someone walking in front of you, showing you the way. How easy it would be to find city venues, especially in London if they had a visual video from the tube stations. The uses are endless. I know there are walking apps but a visual video of actually walking down the street with written reminders when you have to turn the corner is so comforting and would give me confidence to go anywhere. Maybe they have existed and I’ve just not found them, but I doubt there are many…….
Gold star to “Horizon Leeds” – take a look under ‘Getting there by train’………
Well I’ve spent the last week testing the latest version. Very apt really as today I’ll be at the Alzheimers Show at Olympia where I expect to see lots of technology and I’ll get to meet Mary Matthews, inventor of the app! very excited:)
The latest version was immediately more user friendly and easier to navigate – Mary had listened to comments and has obviously been working hard on version 2. It appears to be much slicker and is really heading in the right direction.
Face recognition functionality is one of the most exciting prospects. I’ve loaded photos of people and places so when I point the camera at the person for real it tells me who they are and all the details I’ve stored about them – genius! What I’d like it to do, which I can’t make work at the mo, is pointing the camera at photos – that would be brilliant ! It’s on my feedback list……..
The Alzheimer’s show – Friday 5th & Sat 6th – promises to be invaluable for anyone with dementia in their lives but also for anyone wanting to find out more.
If you are a carer, care professional or member of the public looking for more information about dementia, then a visit to the show will give you the latest and best information, products, experts, services and practical advice to help those affected by dementia.
Details of the show can be found by clicking on the link below:
If anyone reading this has memory problems and would like to help test an App being designed by Memrica called Memrica Prompt please read on!
This is the app I’ve spoken about in previous blogs which I’m also testing. The offer is restricted to people in the UK I’m afraid. The deadline for getting in touch is 12th June but if you read this after this date and are still interested please feel free to contact Mary and she’ll let you know if further testing opportunities are available. It’s a really interesting app and has lots of potential but needs feedback to fine tune the product and make sure it’s user friendly.
Be part of this research and it will help people like me and thousands like us in the future.
If you’re interested, please contact Mary Matthews by email at:
I’ve realised new issues exist since I retired. Namely, I forget to eat or think I’ve not eaten when I have and I now don’t know how much exercise I’m getting and whether I’m getting enough. You may think it all sounds odd but that’s just how it is.
The lack of knowledge around exercise is because when I was at work I knew I used to walk so many miles to and from the bus stop at each end of the day, so add this to all the normal comings and goings and I knew I was OK. Once that stopped I had no concept of the amount of walking I have done.
The forgetting to eat or not knowing if I have is simply down to memory.
Well now I’ve found the answer to both issues in the form of fitness technology. I’ve bought myself a Fitbit Charge.
It works via an app on my iPad. It tells you how far you’ve walked and whether you’ve done enough for the day. It will tell you if you have eaten enough to balance the amount of energy you’ve used for the day – you have to remember to record the food but because it’s on my iPad I seem to remember – just goes to show how much time I spend on my iPad!!
It also tells you the quality of sleep you’ve had – that must work via movement because I tried fooling it one day and it wasn’t fooled – very clever…….
It tells me if I’ve had enough to drink each day too. So it serves as a great reminder and once again technology has saved the day and solved what could have been serious problems.
The good thing about it for the future and which would make it good for other people is that family or friends can have access to it and monitor your stats to see how you’re sleeping or add what you’re eating etc – Result! Lots of possibilities……
New technological innovations are the way forward for future generations. The next generation of people diagnosed with dementia will rely heavily on technology for support. So I’m glad to be part of this generation of people living dementia trialing future innovations.
I’ve recently been lucky enough to be asked to test an app for people with dementia. If I’d have been asked 6 months ago, they would have had to explain the meaning of ‘app’!!
Well last week, the link arrived to download it onto my iPad. The very clever designer is Mary Matthews and the app is the Memrica Prompt memory aid – screen shot below. They’re at the initial stages of testing so there was always going to be good and not so good bits but that’s what testing is all about.
The app enables you to do a variety of things which help with memory. The most innovative is face recognition. You store photos of people in the app and when you forget who they are, you point the camera at the real person and the app will tell you who they are – how clever is that!. Some thought that people may be too embarrassed to point an iPad or phone at a person, but you do it all the time in every day life so I don’t see any problem with it. People who know you have memory problems wouldn’t mind in the least and if they did, that’s their problem.
It also has a very good reminder facility. You can store all manner of reminders (for tablets, appointments etc) but also reminders about ‘things’ – for example, remember to take keys, or when you go on such a journey, remember to take train tickets along with images of those objects. The next stage of development will allow you to set permissions for others to access your app from their phone/iPad and enter reminders for you. This will enable family members to support you while at the same time keeping your own independence – magic……:)
It enables you to set basic memory joggers too – for example, ‘when making bread, remember to add the yeast’ etc etc. You can build up the system to suit you.
I fed back that the navigation wasn’t very logical – those that know me will know that everything has to be logical for me to be able to learn it! There was a really useful ‘notes’ section, which I used to record comments as I was working my way through the app, but it would be so useful for everyday notes to self.
The opportunities are endless and I’m sure I havn’t done it justice with my description. Mary is developing the next stage so can’t wait to see it develop. It really is the way forward for the future as technology is used everywhere nowadays so it shouldn’t be hard to learn – even for someone like me:))
They have a stand at the forthcoming Alzheimer’s show at London’s Olympia June 5th & 6th. The show promises to be a must for anyone with Alzheimer’s. I’m sure we’ll be able to see lots of other helpful innovations there too. Details found via the link: http://alzheimersshow.co.uk/london/