On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget.
I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition.
What I want is not sympathy. What I want is simply to raise awareness.
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Following on from yesterdays blog, we were almost home when I asked Sarah if we could make one tiny detour, to see the bluebells and the buttercups on the Westwood.
So instead of taking the turning to the village at the roundabout, we took a left towards the racecourse, at the edge of the Westwood and parked up.
I just love the Westwood when it’s carpeted in buttercups
The golden colour and delicate petals just make me smile. I remember as a child we use to hold a buttercup under our chin to see if we liked butter….of course it glowed yellow under everyone’s tiny chin….
The bluebell wood can be seen from a distance, the haze of mauve covering the ground…through the little gate and there we were
Surrounded by a haze of wonder. We stopped and listened to the cacophony of sound. Birds of all varieties competing to be heard, but we couldn’t spy a single one.
Winding our way round the man made paths of trodden earth, it felt so peaceful and calm, even though the birds were in full song
The darkness of the tree cover occasionally broken by the sunlight coming through the tops of the trees
I’m so lucky to have so much beauty on my doorstep. Making our way out, back into the sunlight, the heat of the sun now warm as midday approached. The Minster in the distance stood on the horizon
And the black mill, my safety landmark, showing me I was near home
Now we really had to get back home as Sarah was on Night duty that evening, so needed some shut eye
By the time Sarah dropped me off it had turned into a ‘no coat’ kinda day, and still having some energy left in my legs, I had one last trundle to see if the lambs were out…..even though there was only one, I wasn’t disappointed…
I woke to a lovely day. Sarah was picking me up at 09.30 to visit Hornsea Mere, a reservoir I’d never been to but passed many times on the bus to Hornsea. But first I had a trundle round the village to see what was going on…
It had been raining overnight and the village pond looked calm and peaceful
Terence the Terrapin had just surfaced in readiness for what promised to be a lovely basking day
The Moorhen chicks were now losing their google eyes and had rapidly transformed into youngsters
Round the back of the village, the sun lit up my path ahead of me. All alone, still quiet.
The first of the beautiful oriental poppies, one of my favourite flowers, was in full bloom
And as I headed down the lane, just a short walk this morning, everything seemed right in the village, even down to the Robin hopping in front of me to wish me good morning
Sarah arrived as planned and we headed off through the East Yorkshire countryside for the short drive to the Mere. I’m usually sat upstairs on a bus when we drive by so see the Mere appear long before we did today in the car. It’s vast expanse of water seems to appear miles before the entrance.
I imagine it to be a busy place usually, especially in the summer, but today, just a few dog walkers. Only the café open for take away drinks, no public loos yet open, so we gave that a miss. The boats, usually available to hire floating dormant in the water
Won’t be long, just another week before a full service can resume, but today we just had the baby goslings to entertain us
I could see swans in the far distance with my camera but even the zoom couldn’t pick them up clearly….
Private boats had the lake to themselves today, no amateur rowers to contend with. Me and Sarah promised ourselves we’d be one of those rowers the next time we visited…
But for today, it was just the goslings, so we headed off to see the sea next instead
Only a 2 minute drive and we were at the coast. We ambled onto the beach, a mix of sand and stone. The tide on it’s way out.
I love watching and listening to the sea ebb and flow and seeking what treasures it leaves behind on the shore. I picked up a pure white pebble, just the one, as the sea washed over it leaving it perfectly lying on top of the wet sand. There’s nothing sudden about the sea. It’s rhythmic nature calm yet powerful. I could watch over it for hours
The seagulls were my entertainment here
Some paddling in the water, playing with the waves
A small child and her mum racing out to meet the waves and the child racing back as soon as the icy cold water washed over her bare toes
As we turned and retraced our steps, it was almost time to go, but just time to have a cuppa tea and watch the sea and the seagulls once more
That’s not the end of the journey…but more of that tomorrow…..
As I said at the beginning of this week, for those of us affected by dementia, every day is dementia day, there’s no escape. You may forget we exist next week as something else takes your eye, but remember this one last thought…….it applies to anyone and everyone…..
What Action will you take today? To make someone feel safe To make someone feel calm
What Action will you take today? For someone with dementia For a stranger in the street
If you can’t think of an ACTION today JUST SMILE A smile can relieve a thousand thoughts A smile can relieve a thousand worries
If you can’t think of an ACTION to take today JUST SMILE You may make someone else’s day………….
P.s…..there’s still time to sponsor me to raise funds for MInds and Voices by throwing myself off the beautiful fells of Keswick….every penny counts…..🙏
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….
I’m slowly building up my travels ready for Keswick…from my village, to towns and now it was time for a small city, York.
I’d almost forgotten York was a bus ride away, it had never occurred to me to travel there. I suppose the reason being, its in the next county and we’ve been restricted to our own county for so long 🤔 But then a friend on the village bus said she’d been to York and that put the possibility back in my head – if she can do it, I can do it….
I was convinced it was going to be busy, overwhelming, so I decided to take an early morning walk in the village beforehand to calm my nerves….it was my first 6am trundle for a while due to the weather and it was gloriously peaceful
The birds were out in force all making the most of the peace
The squirrel caught red headed with breakfast in his mouth as he climbed the tree to munch away quietly
The ponies in the paddock still half asleep and still huddled together in the early morning sunlight
And just before I reached home, a Robin stopped and posed for the camera – the perfect start to what might be a stressful day
I caught the village bus into town and waited the few minutes for the York bus to arrive. I’d never been on a quiet York bus before, always full of happy shoppers or tourists ready to see the ancient sights of the city of York, but not today. Today there was no queue for the bu. I was relieved but it felt strange. Just a handful of passengers and me with the pick of the seats on the upper deck, all the better to see the views of the journey…
I didn’t expect to have the chance to see the fields of gold over the Wolds this year; my annual treat for a couple of months each year. So it took my breathe away as we climbed into the Wolds with the familiar sight of the windmills and glorious golden fields side by side
From the top of the Wolds and being on the upper deck I could see for miles
This once constant familiar journey, revealing itself mile by mile once more. Through Market Weighton and Pocklington, familiarising myself once more with the landscape. There seemed to be lots of changes, or was that just me forgetting 🤔 or were houses now sitting where fields once were…..probably.
I’d forgotten how long the journey was. The most I’d done before now was 40 minutes; this was double and I found it very tiring; my eyelids closing with the constant travel as few passengers got on and off. I also hadn’t built into my plan, the need for the loo 😳…..my tired brain desperately trying to conjure up an image of where I would find a toilet in York 🙈
As we approached the city I became aware of announcements and suddenly realised the bus was talking – it was announcing each stop and as I looked above me there was also a scrolling sign stating the destination. For some reason I’d been oblivious to its voice until now
That’s a real change and one for the better. Nothing worse on a bus than not knowing where you are or where to get off – well done East Rider…
I also saw Scooters for hire at the side of the street, another happy addition and looked fun to have a go on
As I got off I could see Marks and Spencer ahead of me and headed there hoping their public loos would be open. Thankfully they were, otherwise I’m not sure where I would have headed for! Note to self – remember to think of loos on long journeys….
The escalator took me by surprise. Not been on one for ages and suddenly had to grip harder than I remember. Not used to large shops with several floors. Finding the escalator that went the right way took me round in circles.
Heading out onto once so familiar streets, it felt odd.Over a year since I’ve been to this city that was once my home and today the hustle and bustle was missing; people were missing. I was glad in one way, but sad in another. The atmosphere of this happy tourist place seemed to be lying dormant.
I could see the Minster peaking through these ancient cobbled streets and decided to head there, surely there’ll be tourists there
But no, just me and my camera and a handful of people milling the streets. The Minsters imposing entrance looming large and proud saying “look I’m still here” as I snapped once more
Usually its hard to find a spot where the crowds aren’t but today I could wander where I wanted and made my way away from the Minster
And down to the Museum gardens, the place usually full of people having picnics on the lawns and simply admiring the ancient past
But today just a couple of people in the distance, the crowds yet to return. It felt like I had the beautiful spring flower displays to myself
The time now ticking away and just time for me to see the river. I wonder how many times I ran down one side and up the opposite when I lived here…?
The pleasure boats desperately needing tourists back to fill their seats
A final trundle back through town towards my final destination. So many empty boarded up shops made for a sorry sight; the damage done by Covid clear to see for businesses.
The final bridge over the river, a little busier here.
I wanted to see if the whirlpool was still stirring at the foot of the bridge, the constant in my visits to York and it was. As so much in our lives has changed over the last year, that one constant of nature still swirls by this bridge and that put a comforting smile on my face….
The tourists will be back, life will go on, we just need to build ourselves up slowly….and I made my way back home from one lovely small but perfectly formed city, back to the safety of my village
Me and a few playmates, George, Dory and Agnes, have been working with some brilliant audiologists to create a guide for people who are sensitive to noise to help come out of lockdown.
If you’ve read some of my previous blogs you’ve seen how difficult it’s me for me, so I jumped at the chance to be involved in this. George, Dory and Agnes also have hyperacusis.
It all began when the 4 of us spoke to an audiology conference, indicating how they have the expertise to help those of us with dementia with noise sensitivity – hyperacusis.
I’m very lucky that I have my own supportive and wonderful audiologist and her advice contributed to what I had to say. Some Audiologists are without doubt experts in hyperacusis but few understand the part it plays in dementia, so to have them listen was a true bonus and has led to this poster being created
If you read it, although it’s aimed at people with dementia, it can apply to anyone fearing the noise of coming out of lockdown. Many people have been in silent bubbles so many people will find it helpful advice. Also children with autism, those with learning disabilities – the possibilities are endless……
So it’s the start of Dementia Awareness Week. I’ve never been particularly keen on this as for those of us affected by dementia it’s with us every day of the year and never goes away. So to spotlight it one week a year seems a tad patronising to me, but hey ho, it gets people talking again I suppose.
Innovations in Dementia were given funds from The National Lottery Community fund to set up Dementia Enquirers, a new approach to research that is led and controlled by people living with dementia.The lovely cartoonist Tony Husband came up with our image
The reason for the image, is that ‘leading’ the research doesn’t necessarily mean being behind the wheel. Every component of a car helps you get from A to B. Someone maybe the headlights, coming up with the direction, the ideas we take, others the wheels making sure it happens, down to the nuts and bolts holding it all together – every component vital. Even the professional lead researchers delegate work to be done by others and we were no different.
The difference in our research was that WE chose the subjects that WE thought were important. WE decided how to go about it. WE invited others through our door to support and help.
“We believed we could…and we did!”
The projects are:
Thred, Liverpool: How can urban and rural transport systems help people diagnosed with dementia live independently for longer?
Minds and Voices, York: The pros and cons and particular needs of those living alone with dementia and those living with a care partner
Beth Johnson Foundation, Stoke on Trent: Does class, ethnicity or intellect affect the dementia pathway?
Riversiders in Shrewsbury (with Minds and Voices, York): an enquiry into the what DEEP and Admiral Nurses know about each other
Our Voice Matters, Hartlepool: An enquiry into the benefits of groups for people with dementia
DEEPNess, Isle of Lewis: The necessary components of a dementia-responsive teaching video
EDUCATE, Stockport: The EDUCATE Echo project
We came together last week via zoom to celebrate the launch of our reports – the findings from all our hard work over the last couple of years. We had the challenges of Covid, but we overcame them and continued adapting as we always do.
Now obviously I’m biased because our group in York, Minds and Voices was one of these groups and you can read our interesting findings and advice for professionals as a result on the link below
But obviously ALL the groups looked into some really interesting subjects and the rest can be found here:
I lost my glasses at the beginning of lockdown, or should I say, I couldn’t find them…..🙄 Well after a year of being glassesless I eventually managed to get an appointment at the opticians. I booked it in March but couldn’t get in until May! So a long wait. In the meantime I found them 🙈…..they weren’t lost; they weren’t even hiding; I just couldn’t see their dark blue colour against a dark mat they were sat upon 😳……no contrast so they became invisible to me 🙈…..
So I decided to treat myself to some brighter coloured ones. The other weekend was appointment day. The appointment was at 10.10 am and since it was a sunny morning I decided to set off early and trundle into town with my camera round my neck. I wore the glasses for the first time in over a year and it was amazing how much I could now see 🤣
But I soon began to realise a problem….taking photos and wearing varivocals is very tricky. The clearness I have without them, now blurred when I try and look through the lens 😳….maybe the optician would be able to advise…so I persevered and imagined they must be in focus when I snapped 🤪 Wasn’t until I got home and loaded them that I saw most were…😇
The ducklings were my treat as I headed through the village. The Moorhen chicks always do well, losing only one or two
But the Mallard ducklings have diminished in numbers big time 😔….the 20 or 30 we had, now down to 8-10…😢 natures very cruel at times….but at least the few we have are better than none..and are adorable. For once they were sleepy and still instead of whizzing round the pond, still tired…
And the Moorhen chick always looking comical but cute.
On through the village, blossom everywhere now and looking a picture and as the wind blows, the delicate candy floss pink petals fall like snow..
Out towards the Westwood now and the trundle is becoming harder. Some days I can walk for miles but today I was struggling, my breathing hard, my legs heavy – no rhyme nor reason why, just happens. I’m hearing aidless at the moment too so the Saturday morning traffic was uncomfortable to my ears. However, they’re sending me a replacement for the one I lost, in the post 🙌, so all should be well soon.
Passed the farm and the twin lambs were in the field, one laying out of sight, the other in camera view
The Black Mill appeared ahead in the distance, a few cows lazing on the grass just in sight
As I turned the corner and wobbled over the cattle grid, I could see the more cows were down on the opposite side to the Mill, so walked alongside the road. Some cows making the drivers nervous and slow down as they munched the grass at the roadside, the drivers not sure whether they wanted the grass on the other side
Others just lazed
I love this view of the Minster, looking large. I have an image of this view from my early morning taxi from way back, the sun rising and the Minster lit up highlighting its magnificence
The trees through the middle of the Westwood now beginning to get their summer outfits of leaves
Time to put my camera away, my mask on as I approached the town, now crowded and noisy. I didn’t have to wait too long for the optician to appear. We went through the normal tests, what could I see, better with this lens or that. Apparently I’ve got the start of cataracts in both eyes, but he said it could be years before they become a problem and it’s the most common operation in the world, taking minutes instead of hours. No point in worrying about that then until it happens.
I then asked him about my camera…..
“Ah yes, you can’t wear varifocal glasses when using a camera, the lens positioning of the glasses won’t be right’
😳😳😳……he finished by saying I do need a new prescription and someone would help me choose brighter coloured glasses. The choice was overwhelming though, the girl handing me so many different ones to try, none of them quite right. I just wanted to get out so I said I’d have to bring my daughter to help me. Nothing is ever simple is it?
When I got back home and after a cuppa tea, I went out to take more piccies as dark clouds were looming. I didn’t put my glasses on, after all what was the point if I had to keep taking them off and putting them on again…..as I snapped away, I began to think….well I’ve done without them for the past year, do I really need them because my camera walks are more important to me than seeing perfectly…..mmmm, I’ll have a think 🤔 and the church yard looked lovely with its cherry blossom in full flower….
The day after my beach walk I must have had ants in my pants, as I just couldn’t sit still, I needed to be outside trundling. Even from when I woke, I had an instant desire to be outside. It’s a while since I’ve had a crack of dawn walk, but today I was up and out
Seemed like the world was alive as I felt today in the peace and calm of early morning
Round the field to the pond and the ducklings were up and about, 2 sets out on the path while it was still quiet and empty
I didn’t disturb them and gave them a wide berth so they could continue unafraid as they were there first…
A solitary mallard giving me the perfect silhouette in the pond
Off round the copse and then along the lane where the squirrel was playing hide and seek in the tree trunk
Then along the paddock up to halfpenny cottage where a Robin greeted me from the fence post
Along the lane I could see a horse out for its morning walk being led by one of the friendly stable girls. She called out, as she approached, that she was taking the birthday girl for a walk. It was Holly the horses 13thbirthday, so I gently sang happy birthday before they went on their way
Through the church yard and almost home, I stood and watched a Robin singing its heart out, perched on a gravestone
The first of my walks done and home for a cuppa tea. But I couldn’t settle, I was itching to be outside once more. I seemed to have so much energy that I decided to walk to Folly lake and back, something I hadn’t managed to do for months.
Other walkers now out and about, I knew I’d be safe as I set off. A long dusty lane lay ahead, as we havn’t had any rain for 9 weeks now…so the earth is dry, the fields in much need of a soaking….but they won’t get it today
So many butterflies around on this dry sunny day, most fluttering about in the air, but this one decided to land at just the right moment
Across the fields, wishing everyone a good morning as they passed me by, I eventually came to the corner just before the Folly turning and the copse was alive with bluebells, a purple haze of these beauties
Two men were approaching me, father and son. They weren’t local, the dad visiting his son and spending time with him for the first time in ages. The father and me compared notes on our camera and he asked if there was anything interesting to photograph, so I told him to do the full circuit back to the folly and he’d seen lots of lovely sights…..
Heading down to the folly, I could see and hear lots of people taking advantage of the lovely café there. Fishermen were scattered with all their paraphernalia around the lakes
I should have rested on one of the benches, but my legs were itching to get going again, so I climbed the slope back out onto the single track road.
A beautiful crowd of yellow tulips, their petals edged with orange greeted me as I came to the farm house
And then, my long walk was rewarded. I’d been hoping they’d be there, but the smile on my face must have said how pleased I was as the first local lambs came into view
Such a joy to watch them play
Watching them snuggling next to mum
The father and son approached me coming the other way, their circuit almost done. They chatted again, telling me what they’d seen, but then they saw the lambs and were gone in a second…..Satisfied I had enough piccies, I went back along the long dusty lane, the fields showing signs of the potato harvest that will appear later in the year
My body beginning to flag, I let my camera rest as I concentrated on getting home, my mind now started to fizzle, someone even asking me if I was ok, but I was just concentrating on getting home….but after a refreshing cuppa, I was out for a final time, this time local.
Along the mirage lane to see the fields of gold
Each delicate flower a beauty in its own right
Three pheasants catching my eye as I looked to the right
And finally to the pond, where I started all my trundles early in the day. I got there just as the Heron was taking flight
I went down to where it had landed and reminded it what I’d said about leaving the ducklings alone. We still have a fair number including the Moorhen chicks
The rest of the ducklings were busy ignoring the heron and one had found a sneaky way up the steps, up underneath, where the edge had eroded…
As I watched the goose snuggle down for a nap….I too began to feel jaded, happy but tired
So off I went home for a cuppa tea, knowing it would be for the last time today, no more energy to venture out…..well…apart from snapping the moon before bed…the perfect end to a perfect day…
After the disaster of the train journey to the coast the other week, I decided to try again, but this time on the bus to Hornsea, a seaside town just a 30 minute bus ride from town. I have to get the hang of the outside world as my trip to my paradise of Keswick is now only a few weeks away..
I’ve been very good with my hearing aids and have taken her advice of taking a deep breathe when anything noisy approaches and having a relaxed posture and muscle tone as that also convinces the brain that the loud noises aren’t such a big threat.
So camera round my neck, which also serves to relax me, I decided to trundle into town instead of taking the early morning bus, as then I might see the town cows who were having their first day of freedom on the Westwood and would be there for the summer.
Checking on the ducklings first and the Moorhen was having her morning shower..
The ducklings were awake, bright eyed and bushy feathers
All was well as I went passed the traffic lights and out of the village onto the main road. The spring blossom is now coming into full bloom and looking glorious against the blue sky of the morning
As I neared the Westwood I could see the town cows around the Black Mill
Everyone is warned when the cows are first set free as they’re frisky and new to their surroundings. They have no concept of cars and horns but they have right of way. It is their land and it happens to have a road running through it so drivers have to be patient
The meadow comes alive when they appear and I adore their sight
Especially against the horizon on a lovely sunny day as this was
I love to see Wisteria hanging against a wall, cascades of perfumed mauve flowers now visible as I head through the houses
Now at the bus station, the bus soon arrived. Always a quiet bus and a lovely ride is it’s a double decker; the views from upstairs revealing gems hidden over the hedges
We soon reached the coast. I was uncertain what to expect here; would there be the crowds of the previous week the overwhelming noise? Thankfully not.
There was calm and the expanse of the tide reaching for the shore. I climbed downthe steps and walked along the beach and stood on the sea edge listening to the sound of the waves crashing against the breakers
I had an hour before the bus would take me back again, so I ambled along the sand and pebbles, so many different shapes and colours.. A seagull perched high up on a beacon out at sea, having a morning nap
And a child in the distance feeling the sea wash over her toes maybe for the first time watching in fascination – wonder what’s she thinking…?
Almost time to retrace my steps so I climbed onto the prom this time. I hadn’t noticed the people from below, but it wasn’t overwhelming, people were ambling like me or sat on a bench with a cuppa tea watching the sea.
Thankfully this was a different experience to the week before, a better one, one I could cope with. One last look at the sea before heading home and a ghost ship on the horizon catches my eye going who knows where…
The outside world is becoming easier to manage, easier to re-enter, slowly but surely…..