Category Archives: adapting

Christmas Wrapping gets under way…..

I used to enjoy wrapping Christmas presents, each carefully wrapped, bows galore, lavishing time and  love on the simplest of presents sometimes. The choosing of paper always carefully thought out, it had to be right. But now I get all fingers and thumbs and buy coloured tissue paper and a large roll of brown parcel paper as it’s easier for me to fold and manage.

Then my playmate Gail, who showed me how to do my poppy pebbles made a video about Christmas wrapping.  She has always been a craft person extraordinaire and even now, with dementia in tow she finds ways to create the most wonderful things. She made this bear, complete with ‘I want to speak’ badge which I bought from her recently

But after watching her Christmas wrapping video, it all looked so possible that I gave it a go using several of her ideas. I was so pleased with the results that I’ve warned Sarah, Gemma and Stuart that they must admire the wrapping first 😂🤣……I’m sure Billy will give me his opinion in his own inimitable way 😻…….

Anyway here’s a few of the results….not perfect, but much better than they would have been without Gail’s suggestions….

You can watch Gail video here……

**Stop Press!* another new website about Dementia Craftivism…..

An extra blog this morning…..Last week I told you about the release of our new website around Tips from and for people living with dementia. If you missed it you can see it here:

Home

Well we’re on a roll because at 10am today there’s the release of another around Dementia Craftivism. People with dementia showing what we CAN do, all ages, from all over the country! You can listen to me talking about my love of photography and many more playmates about their love of other crafts. Here’s the Press Release:

We are delighted to be launching our new ‘Dementia Creatives’ website on Monday 14 December 2020. The link is www.dementiacreatives.org.uk

Dementia Creatives is supported and hosted by Innovations in Dementia.
It is funded by The National Lottery Community Fund.

These pages celebrate the many ways in which people with dementia tell a story about who they are, where they have been, and where they are going. Dementia doesn’t necessarily curb the desire to be creative. On the contrary, many people begin to explore new forms of expression after their diagnosis. Many others maintain or rekindle old skills. It feels good. It brings us together. And we learn from it and from each other.

The Dementia Craftivists Galleries showcase the creations of people who are living with dementia who are using these to make supportive and enjoyable links across communities (including care homes). Our project is all about the pride in creating something yourself from scratch (whether it’s knitting, painting, song or play-writing, poetry, woodwork, or much more)… while sending, if you so choose, your own message to others.

And the 22 wonderful DEEP Moments films were made by four DEEP groups –  Ashford PhoenixPathways in Bradford, peer support group at Beth Johnson Foundation and SUNshiners  – who worked with film- makers from Biggerhouse. They will help you see life with dementia afresh, and from many new perspectives.

Everyone who has dementia can join in with the Craftivism project – and we are also looking for further collaborations (and funding!). For further information contact philly@myid.org.uk

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

A sad goodbye to my faithful walking shoes of 20 years…..

For those walkers out there amongst you, you’ll understand this blog better than most.

When you find comfortable walking shoes, it’s an absolute delight. To walk miles and miles and miles, the shoes have to be right and I found mine about 12 years ago in York when I moved there the first time round. I’m finding it hard to work out the exact year, time merging and difficult to configure….but amazingly when I started hunting around in my memory box for clues I was astonished to find it was 20 years!!!! I remember buying the shoes when I knew I’d be doing the 3 peaks and the medal is the proof of the date

I rented a flat by the River Foss at first and worked at the hospital…..again was it that flat first or the one next to the hospital….🤔…anyway, doesn’t matter. My walking shoes spent many a day, taking me miles. York is so compact, so neat that you don’t need to drive anywhere within York if like walking. Up and down the River Ouse I’d go, up to the Bishops Palace, down past Milennium Bridge and through town back home. North, south, east and west, I simply walked and walked.

I took part in the Global walking challenge one year as part of a hospital team and hospital initative to get people walking. I forget how long we had to notch up the miles, but I remember coming 3rd in the hospital walking hundreds of thousands of steps….all with my faithful walking shoes…

During this period my trek to do the 3 Yorkshire Peaks was also added to the amount – walking the 25 miles within 12 hours was the target. I did it in 9 hours 1 minute….that minute still rankles 😂

 

 I must have gone to my paradise of  Keswick dozens of times with my trusty shoes

As dementia took away the ability to tie shoe laces, I thought that was to be the end of them, as all walking shoes seem to come with laces,  until I found my new found friends of ‘no tie shoe laces’ and Sarah replaced the laces for me and on I went wearing my trusty shoes….

Well now they’re well and truly worn out, bit like me really. They let in the rain and the heels are worn right down. It was my daughter Gemma, who said that they may still make them, look on line….😳….this chink of hope at having the exact replacement tinged with a shadow of doubt at being able to get them…

But guess, what, they still make them. The very shop I bought them from originally in York, still sells them now…..🙌🙌🙌…..so I ordered some immediately…they arrived within the week and Sarah threaded the no tie laces into them..They fitted like the proverbial glove and felt just the same…

But what to do with my old faithfuls? It wouldn’t be fair to take them to the charity shop, letting in water and the soles worn right down. I wouldn’t dream of sending them to landfill…..🤔…..then suddenly a spark of an idea filled my head….they can stay with me and retire to the garden instead….

 

The camera never lies…….

I’m not sure why I decided to splash out on a camera just before lockdown arrived. Before we’d really understood the significance that Covid was going to have on our lives. But I’m so glad I did as it’s kept me sane, it’s given me a reason to exist each day and it’s opened up a new calmer world when all around has been chaos.

Many sceptical people have questioned my ability to use a camera, simply because I have dementia…well I chose it because I had that make many moons ago and even though they’ve upgraded the design, they’ve kept all the buttons in the same place. I only use the click and zoom. It has many more features, but I’m happy using the two I remember and feel comfortable with.

My first adventure with it thankfully took place just before lockdown when I went to stay with the lovely Philly Hare, my friend  in the Western Isles of Scotland on the Isle of Lewis…I was just getting use to it then but it was an instantaneous joy to have with me.

 I would take, and still do, hundreds of photos on 1 single trundle and only a handful would be in focus, but it’s the handful that count…I don’t care.

Then lockdown came and my world along with everyone else’s changed beyond recognition. It was then my camera came into it’s own. Making it easier and possible to adapt to this strange confinement…in my village…

I think I’ve probably always had an eye for a good photo, but now my brain is slower, I seem to see more of the detail because my eyes linger on a spot for a few moments more…capturing moments of delight that last seconds and blink and they’re gone…

I’ve made many new friends in the village since I started posting them each day on our village Facebook page. Not knowing if people would be interested. But kind comments came and throughout lockdown and beyond I post my village trundles daily. It’s become a comfort to me.

People often ask me, as I pass them in the village:

Taken any good ones today?”

And I don’t really know. In fact the joy of arriving home and see them magically transfer from camera to phone to ipad, never ceases to amaze me. And then I sit down with a cuppa and each photo revealed is a revelation of where I’ve been that day and more importantly what I’ve seen.

I can stand for ages, pointing my camera at one of the ducks, waiting for it to turn it’s head and get lost in that moment. It’s magical when they do

I was guilty in the passed of rushing around not noticing the beauty of nature around, but when you take a moment to stop…and really look….really look at the detail….so many simple things are beautifully designed by nature. Dementia has given me that gift of seeing the detail, simply because of my slowing brain….

As I caught Teresa the Terrapin surfacing to see if it was a basking day from the depths of the water, I clicked…..

….then turned round and focused on the white duck looking serene by the island, click…

I looked back and Teresa was gone out of sight and back under the water. I turned back to the white duck and she’d also gone. I know I’d seen them in that moment as there they were on the photos. I hadn’t imagined their beauty. So often I see things and am not quite sure if they’re real or a figment of my ailing brain, but one thing is for sure and a great comfort for me……. the camera never lies.

Having to admit to needing help…..

Sometimes we have to admit we need help….but it’s so hard, after all I’m not physically disabled. It’s just my brain and body won’t always co-operate.

In days gone by I would have done everything possible myself. All my decorating, all my gardening, tiling, skirting, dado rails, all myself. If I didn’t know how to do it I would get a book, ask a friend to show me how, or in more recent times, watch a YouTube video…..anything to avoid having to get someone into my house.

In the early days, it was a financial necessity, later on it was pride in the fact I could do it better myself….

But now since dementia is often ruling the roost and decision making, I’m having to bit by bit, relinquish that independence….and it’s hard.

Sometimes we all hand over jobs to people, simply because we can, maybe we don’t have the time, maybe it’s simply easier, but when that decision is taken out of your hands, it’s difficult to admit you no longer could if you wished….

Soon after I moved into my village home I realised I’d made a bad decision on so many counts. But me and my daughters didn’t realise at the time that I simply wasn’t capable of making good decisions any more; choosing this house was one of them, choosing it on the basis of the large window overlooking the paddock….

The 2 gardens aren’t massive, but they’re really too big for me to manage. I only trust myself to use the tiny Hedge trimmer

And I could manage the little hedges I had using that, bit by bit I’d get there. But then ladders and balance started not to mix…..that became sad, as it cancels out so many things…but Stuart would happily do the top of the hedge when he had time. But then one day I’m sat in my sun room, looking out at the overgrown hedges and think, I can’t do that anymore….that dreaded ‘can’t’ word……😔

But I’d admitted it. I immediately went onto the village facebook page before I could change my mind and asked if anyone knew a nice trust worthy person who could come and do it for me….

Replies were slow to come for this request, as most people did their own 🙄…then slowly but surely they started to come in and one person stood out from the rest from the comments. I asked Gemma to ring him for me. I would normally have gone for a female but this man had such nice comments about him, it felt right…..

So last week, he turned up. My instinct was right. Such a kind gentle smiley person. He did a wonderful job. It was obvious he loved trees, he loved gardens and he loved growing things. It would have taken me several days whereas it took him 2 hours. He even brought a dust pan and brush to tidy up any mess and took everything away with him.

I’d apologised when he arrived for not being able to offer him a cuppa tea or coffee. My taste for tea having changed so much, I don’t have milk in the house now or sugar. But he was quite happy, he’d brought his own flask. No tuts, no comments, he simply understood ..

During a 2 minute break I told him what a good job he was going and we began to chat. He told me he had an allotment in our village…😳…I never knew our village had an allottment!….how come I hadn’t seen it….?

Ah it’s hidden away not far from where we’re standing, just down the road”

Well, that would be my next task, to find this paradise that’s hidden away……more on that discovery tomorrow..

As  he finished he asked me if there was anything he’d missed. I’d sat in the sunroom and often thought that a branch was in the way of me seeing the birds when they land on my shed, so he chopped that for me with a smile…and sure enough, soon after there was the piccie I couldn’t get before

As he left, I was glad I’d found such a nice person and relinquishing that task had been made easier by his kindness…

Not long after I could hear my neighbours. Both wives persuading their husbands to tidy up their side now 🤣……

 

 

 

Loss of memories is hard, loss of Hope is even harder…

We all need a reason to live……When you’re given a life limiting diagnosis the need is even greater …

 People living with dementia need a reason to keep living. The love and support of their closest family members (like husbands, wives, partners, children) rather more important that a Govt pledge of testing! Plwd already have an incurable, terminal illness – and are dying from it in increasing nos.”

Said Johns campaign on Twitter recently…..

 It got me thinking how strange and different  life is becoming and I’m not sure I can cope with it this way. I know I’m luckier than many, ones without a job, without a home and far more. We each have our stresses through this crazy time and these are just my worries …..

I’m trying to keep writing about anything and everything because that’s the one thing I cling to from the old world….but I need more …..

I’ve always had trouble sleeping…2-4hrs being my norm – but before Covid I coped with it, I had a purpose to be tired, but now I’m struggling because that purpose no longer exists, so it’s exhausting just existing at the mo….

If Zoom is the new reality for conferences and events, then I’m done for. I’d built a new life  travelling around the country meeting all types of people, talking at events, educating, meeting playmates. selling my books, and now that life has disappeared. That was my life. That kept dementia at bay…

I know I’m on a real downer, but I dared to look to the future and I saw nothing…

….people with dementia need more than Zoom to keep them connected. I need more than zoom….you’d have thought that 3 or 4 days a week travelling all over would be more exhausting than 3 or 4 zooms a week, but for some reason that’s not the case. Yes, it was exhausting travelling, but it enabled me to use my brain continually, working things out through the day, keeping it stimulated with different environments, different conversations. It gave me the purpose I needed.  I’m convinced that’s why my decline has been slower than some.

But now…….you don’t have to think too hard to click on a link. No pink file needed to be sorted….another ‘last’ passed by unrecognised as I don’t remember the last time I was on a train, the last event, the last people I met….I could look it up on my blog, but they’d just be words, no emotional connection I don’t think…just sadness at another ‘last time’ lost. Each day the same as the previous one, no true variety as before. It’s becoming even harder to motivate, to become engaged….I’m in a hole and the sides are steep…

Last week in Keswick, helped me no end. Different scenery, different conversations, different trundles, all helping me work my brain harder. But Sarah took me there. No planning by me. I’m too worried by the trains at the mo. I did think about going on the train but I opened the site to book the tickets and sort out the times, something I’ve done since being diagnosed, and it was gone….alien…might have well have been in a foreign language.

I will have to find a way to learn it all again, hopefully, as that’s the only way I won’t have to rely on my daughters. AND I do like train journeys, I do like planning them…it all helps my brain stay alive. I just seem to have lost that skill at the mo….

So the future looks bleak, a normality far in the distance and we, like many others with a life limiting condition, don’t have that luxury of time. The new normal won’t resemble the old…

Hope is the one thing I’ve always had.

The travelling around is the one thing that has given me hope; meeting playmates in person gives me hope.  Hope that tomorrow will be better after a foggy day, hope that today will be a good day, but without hope it’s hard to fight dementia…

As the title of this blog said…. Loss of memories is hard, loss of Hope is even harder…

I’m clinging to that smidging of hope I still have left to hope that I’ll think differently some time soon……

 

 

 

 

How are you coping with Lockdown…..?

I found this unpublished blog lurking in the background last week. I must have forgotten to set the date on it so it’s been hiding unseen until today. Typing and photography have helped me through these last few months, daily activities, daily routine……I think I might have written this near the beginning….anyway, finally found and published now…..

I’m always thankful when I’m asked to write pieces as it makes me think, gives me a different writing experience and makes me feel useful. I’m sure I’ve said before but typing is my escape from dementia, that part of my brain not yet been infiltrated by the dreaded disease…..The people at Brace emailed me recently…

BRACE funds world class clinical and laboratory research into Alzheimer’s and other forms of dementia to find better treatments, achieve earlier diagnosis and one day, a cure.”

BRACE stands out as an important charity with a unique role. Founded in 1987 by people whose families were affected by the disease, BRACE was drumming up support for dementia research long before the news broadcasts were full of dementia stories and a consensus formed that answers were needed urgently.”

They asked me to write a piece on how I’m surviving lockdown …This is a piece I wrote ……I’m sure if asked now, it would be very different…maybe….enjoy …..

https://www.alzheimers-brace.org/blog/adapting-to-lockdown-with-dementia

 

My playmates ‘No Sew’ genius mask….

Now I’m venturing out on the village bus, I obviously have to wear a face mask and I’ve been wearing them from start to end of journey. The disposable ones you can buy made me extremely hot and sweaty on my face. The posher ones are seem so expensive – people trying to make a killing while they can, I suppose…

And really weren’t very comfortable to wear. I really can’t imagine how front line staff wear them for a whole shift. Necessity just making them tolerate them I suppose. But many have spoken of sore ears, sore faces from the sweat, it must be horrible for them……I saw on our village facebook page that a villager has made 500 for locals – but much nicer to wear – how kind is that….I must have missed seeing them 🙄

Anyway, I have many wonderful playmates, but one in particular, Gail, has an amazing craft room at home as she used to do so much pre diagnosis, that now she still continues to make amazing things…..

I feel a special affinity with Gail as she lives in one of my favourite places near Blackpool, Cleveleys, the home the the beautiful shell and old man at sea. Her daily walk is one I do whenever I’m there, which obviously hasn’t been since last year. But it’s lovely to think of her walking the same steps….

As I said she’s very ‘Crafty’ and she decided to make a video of how to make a face covering, without the need to sew. Just what I needed! It meant I could have whatever colour I wanted and nice soft material. They really are very simple to make and even I found them simple – after a few tries……so now I have 3 tartan face masks which are much nicer to wear and washable…..3 simple men’s handkerchiefs turned into face coverings…..genius

You can see Gail work her magic on this simple to follow video….. 

https://www.youtube.com/watch?v=YcnsKFfSv4g

My active day is reducing…….

My dear Aussie playmate, Kate Swaffer. Posted a link on Twitter last week. It immediately resonated with how I was feeling. The person who wrote the article, Christine Miserandino, has Lupus but, as Kate said, it is:

A great analogy of what it’s like living with Invisible Disabilities including dementia”

Indeed, it was how I’ve been feeling these last couple of weeks or so….The number of spoons I have at my disposal seems to be disminishing (you’ll have to read the wonderful article to see what I’m talking about) ….

The number of hours where my brain is capable of actively thinking, reducing……because the stimulation of the previous chaotic world is no longer with us, my brain doesn’t have that constant work out that it use to get. It’s becoming harder to think and do, to come up with ideas. My blog is the one thing that keeps me typing as typing these thoughts help me make sense of what’s happening. My trundles with my camera give me a focus for the day….but thinking, real constructive thinking is so hard at the mo…..

I was asked to think of 25 playmates the other day…I could think of a handful, no more, yet I know hundreds…..I was asked to put together a list of suggestions for a project, but it took me days instead of hours….my brain capable of a couple at a time and then I’d exhausted it…

I used to go on social media in the early evening, now my day stops about 5.30, I’m spent, nothing left, I just stare at the telly after tea …what will happen when I’m travelling home in the evening when travelling comes back again?

So the number of spoons at my disposal is reducing in number…lets hope the quantity increases when all this is over……now read this wonderful  article to find out what on earth I’m talking about, and thank you Kate for bringing it to my attention…

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/