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Many know sleep for me can be a real issue.
Sleep changes are quite common when living with dementia and I frequently have trouble falling asleep, wake repeatedly through the night, become fidgety in the evening, which all affect quality of sleep and life in general.
I have read articles on sleep or lack of sleep and how it can damage the brain, I think I realise that it’s not doing my brain any good by not sleeping well.
For me it’s the difficulty of falling asleep or if I do fall asleep straight away it’s maintaining or staying asleep
Then if I do sleep it the vivid dreams or nightmares that can be quite disturbing and stick in my brain as if they are actually real
I know my sleep patterns must be having an impact on my memory, my thinking and my mood and I have tried several practical steps and strategies like
Keep a consistent daily routine
Bedtime at the same time
Increase daytime activity, cant increase anymore I never seem to stop!
I never nap in the day, unless I’m unwell
I walk every day
I have cut down on caffeine, and I don’t drink alcohol
Tried apps, listening to calming music, listening to an audiobook
What ever I do, never seem to help, then I heard Doctor Amir Khan on tv one morning, he was talking about sleep and a tip to help you sleep, or should I say fall asleep, it’s called “Cognitive Shuffling”
Sceptical as always, that evening at 10pm I threw back the duvet, climbed into bed, found my comfy position and began the tip which the doctor had explained on early morning tv.
Lie down in your bed, get comfortable, and close your eyes.
Think of a word with no emotional connection, ideally one without repeating letters for example “BED”
Now for the alphabetic shuffling
Take the first letter of your chosen word “BED” which is ‘B’
Think of as many words as possible that begin with that letter….bat, banana, binoculars, bear, bee.
As you think of each word, “picture the object in your mind’s eye”. If you run out of words move on the the next letter
Next letter ‘E’ do exactly the same think of words being with ‘E’ …emu, eye, elephant. As before if you run out of words, a move to the next letter ‘D’
I did fall asleep thinking of words, I was amazed!
I have used this method more than once, quite a few times actually and it has worked nearly every time. The only problem for me, on odd occasions I struggle to think of lots of words beginning with a certain letter, my brain seems to freeze, but all in all I am finding this a very useful sleep tip.
Might not work for everyone but there’s no harm in trying if you are struggling to get to sleep.
It’s all about finding something that works for you.
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I used to think my life would follow a steady, predictable path, Routines always had a place in my life, little did I know that routines would become important for me to be able to function, giving me familiarity and safety.
In the real world…Life can change in an instant, which upsets the flow, cracks in routines are formed and can be broken.
If we have that unwillingness to change or adapt to the changes, that can stop us from moving forward.
Obviously this is my personal experience and I can not comment for others.
I know that sticking to what i know gives me comfort and definitely reduces stress. Living with dementia, the comfort familiarity and routine is so important, but it’s also important to have a little adaptability.
It’s not changing my routine, it’s just being flexible to adjust and adapt, to help me stay more resilient and live my life, I need to stay independent for as long as I can. I don’t want people doing everything for me …Not yet anyway!
Change always feels difficult, it seems as we get older the reluctance… or is it just stubbornness to adapt and change that becomes more prevalent.
10 / 20 years ago retirement planning seemed so far away for me…Then dementia stepped in …What if something like this was to happen to you! I can tell you, there is nothing wrong with planning ahead! I wish I had done it years ago!!
When dementia came into my life, retirement hadn’t really crossed my mind apart from a pension scheme I had…I admit early retirement or not being able to work had never even crossed my mind.
When I was diagnosed with Early onset Alzheimer’s not only the diagnosis hit me it was also the financial vulnerability…How where we going to manage on one wage!
I suppose the stresses, strains and worries did impact our relationship slightly, it was the worry of how we were going to manage that put doubt in our minds. Then again we had been told I would only have 7 years left! Those words definitely put our brains into overdrive!
Every relationship is different and it’s how you communicate that is so important, no good hiding things or not talking, how will anything ever change…How can you make changes and adapt.
Change can feel uncomfortable, but the greater risk is to stay locked in a place while the world moves on around you.
Adaptability isn’t about upheaval, it’s about remaining, prepared, and willing to try change.
Finding ways that help and assist you sooner, the easier it will become to navigate those larger changes later in life. It will hopefully keep your sense of purpose alive too.
Never be afraid to try something new, especially when it could make life easier.
I think of someone I know who still uses a very old mobile phone. It can only make calls and send texts, no photos to capture memories, no email to stay connected, no simple way to pay or manage everyday tasks. They refuse to change the phone…even though a newer phone could quietly help. Instead, life becomes harder than it needs to be, and the world gets further and further away.
What worries me most is if you don’t move forward and adapt while you still can, there may come a time when learning feels impossible. And when that happens, the world doesn’t just stand still, it slowly begins to close in. Opportunities fade, connections weaken, and the outside world grows smaller… with you trapped inside it.
Change can feel frightening, but standing still can be far more costly.
Embracing change isn’t about keeping up for the sake of it…it’s about holding on to your independence, your confidence, and keeping your place in this world for as long as possible.
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An old school friend i hadn’t seen for a couple of years, popped in to my messages.
“Hi how are you? We’re coming to Cala gran with our granddaughter for a few days, don’t know if you fancy meeting up for a brew? x”
I immediately answered…
“Hi, nice to hear from you. I’m ok thanks. Yes we can try and get together at some point I’m Free that Friday between 10.30 and 2pm or Saturday morning Be nice to have a catch up 😊x”
Me and Lesley were good friends at high school, infact I was a bridesmaid at her wedding and I think our first born children where only months apart.
Life pulled us in different directions, me I had a crappie first marriage, so did my friend and I think our lives just became busier and possibly more complicated. We met when we could but did drift apart …Life just got in the way!
Our chats and phone calls dwindled, no one’s fault, our lives just changed…New partners, new jobs…I moved…Then dementia struck.
We had arranged to meet at a cafe, which was convenient for both of us…It’s funny, I spotted her instantly walking down the road, and as if we had never been apart the connection was still there…it’s like we were 16 again!
We entered the cafe, my friend ordered the refreshments. Making ourselves comfortable we began to catch up, the conversations flowed… Sometimes it was like getting into a Time Machine, flashbacks of how we were, reminiscing on events, people our children, the good the bad, the sad and the happy times. We never stopped talking.
The cafe was so loud and so busy but I think I had blocked out the noise because I was consumed in our conversations, it was a highlighted reel of nostalgia, laughs, and a few “wait, what?!” moments.
It only seemed like an hour had gone by…So when we looked at our watches it was a definite “Wow look at the time, we’ve nearly missed lunch!” 3 hours had passed!
We parted with that glow of a friendship revived, I was buzzing and also exhausted. Catch-ups like this are like gold, It boosts those happy endorphins…it was a refresh on my emotional battery.
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This chapter I’m now living has taught me more about patience, acceptance, and the beauty of the present moment than I ever expected to learn. Who would have thought Alzheimer’s could bring something so powerful.
There are days when the memory lapses make me feel frustrated or sad. I’ll go to say a person’s name… it just vanishes. Or I’ll be telling a story and lose where I am. Yes, these moments can hurt as it’s just a reminder that my brain doesn’t work as it once did.
But I’ve also realized that these moments don’t define me. I still have so much…the laughter, love, and creativity to fill my days.
One comfort I have, is spending time outdoors with my two Scotties. They don’t mind if I forget a name, they just want to walk, sniff, and explore. As we wander together, with camera around my neck, I take photos of birds, flowers, and trees. I can’t always recall the names of the birds I’m looking at now, but that doesn’t matter. The joy isn’t in remembering their names, it’s just watching them, even trying to connect with them
Nature has a soothing rhythm that keeps me grounded. It doesn’t rush or judge, it simply nature. Being outside reminds me that the world is still full of beauty, no matter what’s happening in my brain.
Creativity has always been big part of my life, and arts and crafts continues to bring me purpose and peace. Whether I’m painting, working on a small craft project, or just letting color and texture flow through my hands, I feel connected to something that doesn’t rely on memory, my creativity comes from my heart. Creating something helps me to express what words sometimes can’t.
Over time, I’m learning to let go of what I can’t control and to focus on what matters: love, the small joys, the laughter. I know I have to keep lots of notes and reminders, diary, calendar anything to help and assist and I suppose I accept help more than I used to. I’ve learned that needing help isn’t weakness, it’s part of how I keep living.
Every day is different, but each one still holds meaning. I might forget the name of a bird, or the word in a conversation, but I can still feel the black wirey fur of my dogs, see sunlight through the trees, watch the waves crash against the shore, smell the paint on my brush, or simply just laugh together with my hubby.
I know Alzheimer’s is taking things slowly, but it hasn’t taken away the beauty in the world around me.
Living with Alzheimer’s isn’t easy, but it’s taught me to slow down, love the simple things in life, my dogs’ with their waggy tails, sunlight on dewy flowers and leaves, and of course the joy of creating something with my hands.
Alzheimer’s is not my easiest chapter, and all I can say is keep finding the little things that make your heart smile and sing.
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What do I mean by avoidable questions
Is it the sense of lazy or redundant queries where the asker could easily find the answer themselves with minimal effort.
At the moment these avoidable questions are starting to grate, why should my brain have to work harder, when your brain is healthy?
I suppose searching or looking takes effort!
People often ask questions that feel so unnecessary to me now, I suppose
I think…If I have to find work arounds and back up plans to help me without constantly asking questions, why is there a need for these avoidable questions!
Is it that people genuinely don’t notice what they were looking for? I suppose they might have looked in the cupboard, missed the bread, then needed to ask…But did they really take the time to look!
Perhaps people need confirmation. Or is it just a habit ?
I suppose questions get attention, begin interaction, or is it just they really need the confirmation
What ever it is it is starting to really annoy me!!
I do try to stay calm, but after several avoidable questions, my eyes are rolling and yes, the deep sighs take over.
I then answer quickly and briefly, most probably a little sharp.
Most of the time you will get “I don’t know” because guess what, I’m the person living with dementia that clearly doesn’t know or can’t bloody remember!
Avoidable questions are exhausting
Lots of questions are exhausting! And my brain is tired!
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After attending several meetings of a local working group in my area, it’s with a heavy heart I decided to leave the group.
I cannot sit round a table with
People that don’t think people with dementia should be included or involved.
Ignore my words, but when a professional says the exact same thing it’s accepted
Look straight through me as if I don’t exist
No back up or support
It’s like being fed to the lions!
I have never experienced anything like it in all the 6 years of attending meetings!
I have felt so alone, but looking back i think this is how some people have wanted me to feel.
Because i have a voice, opinions and i challenge, they have seen me as a possible threat. A threat for change…
Im not a threat i just want better support for people living with early onset dementia…As i keep saying it’s not all about shaking a tambourine!
We have to accommodate everyone!
I met with a lady the other week from my area, whom feels there is a definite lack of support for younger people, it’s so sad listening to people that are under supported…2026 and still nothing changes!
How do we tackle this situation? How do we create better support, how do we provide and promote an inclusive dementia service, when there are people in a working group that won’t accept we need to change and accommodate younger people!
I get so annoyed…so angry and I’m definitely tired of repeating myself.
It was just stressing me out!
So, I sent them all an email resigning from the group
Dear Working Group Members,
I hope this email finds you well.
After several months of involvement and careful reflection, I have decided to step down from all my participation in the group.
My primary reason is that I do not feel the group is making sufficient progress in addressing the needs of younger people living with dementia.
While activities such as singing groups and colouring sessions are valuable for many, they do not meet the diverse, age‑appropriate needs of the early‑onset dementia community.
I believe stronger advocacy and different approaches are required to change how society perceives and supports people with young‑onset dementia.
I am deeply disappointed and disheartened by this direction and I cannot continue my involvement while the group’s focus remains unchanged.
Thank you for the opportunity to contribute.
I wish you all the best
It’s disheartening to feel excluded it makes me feel irrelevant and undervalued because I have dementia. It’s like my contributions don’t matter. It’s like dementia leads others to overlook me, which in the end affects my confidence to participate
If only people would realise that having someone with live experience is invaluable.
Lived experience isn’t nice to have but we do have the power to identify blind spots and flaws…We have the power to change and transform if you would only “LISTEN”
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A week away from my routine is wonderful, I absolutely love seeing new sights and spending quality time with hubby.
Now I also carry a fog, “where has my routine gone?”
Where I was once able to slip straight back into how things were, living with dementia my return can be much harder than it used to be.
The first Monday morning I focus on unanswered emails, which don’t quite go to plan, those emails I had previously drafted, I accidentally delete! How on earth that happened I have no idea.
Rolling my eyes and taking a deep breath…it’s no good getting angry, I just need to try and get my brain into gear.
With messages and emails coming though whilst I’m replying to emails is confusing my brain this morning, perhaps I would be better off taking a short break, having a cup of tea and return to my emails in a short while.
The only thing is, I find if I take a short break, I forget what I was doing. This is why I always like to answer emails promptly.
I do make checklist and try my best to stick to them, but I can’t guarantee that will work, as I get easily distracted these days
I do have a calendar on the wall, and my diary which helps a little, what I really need is a personal assistant!
When I have taken a short break away from all the meetings, and emails. I have to rebuild my routines gradually. I do expect everything to fall back into place immediately and I totally forget that my head works differently now, and I do have to reintroduce my routine of home
I think I secretly like to try and forget I have dementia and just expect everything to run smoothly when I return from a break away from home…Who am I kidding, it’s not long before I realise my sidekick is firmly by my side!
I know i should be more patient with myself and give myself a little credit for things that do go well .
Resuming “normal” now means another new normal and that I have to accept.
Every steady step back into routine is definitely an achievement.
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I’m involved in a working group which consists of professionals, caregivers and me the only person living with dementia.
The last couple of meetings I have attended they have got quite heated…I don’t think we are all singing from the same hymn sheet!
I’m beginning to think that some people are too set in their ways and to blinkered to change. At the end of the day, everyone in in a meeting has a voice and everyone should be heard.
For me it’s about how we get the best support for people living with dementia no matter about age, race or their background
We need to promote that a diagnosis of dementia is not the end! There is so much that people can do. We need to be promoting so much more than just singing groups, we don’t want people to think that once you have received a diagnosis of dementia it’s all about shaking a tambourine and banging instruments loudly!
Singing sessions can be wonderful at bring some people together, but it’s only one tool in a that Very Large Toolbox!
We should not assume that everyone wants the same thing, or that the one activity will suit everyone.
There is so much more to supporting people than singing or reminiscing. We are not all from the same era and we definitely don’t all have the same age mindset!
By being stuck on one activity we miss opportunities to connect, and to support others.
When we are talking about supporting people this is where the problems start, supposedly there are always lack of funds where dementia is concerned, there is also lack of understanding too.
Today’s meeting I totally lost the will to live!
My blood pressure was going through the roof!
How will things ever get better, how will things ever change if we keep going over the same things!
In this meeting, we have yet again spent time on what the group should be called, and now a new subject…biscuits!
FOR GOODNESS SAKE!
WE ARE TRYING TO RAISE AWARENESS AROUND DEMENTIA!!
I don’t care what the group is called and I definitely don’t care if I don’t receive a bloody biscuit!
What I do care about is all those people that are not receiving support after a diagnosis of dementia!
All those people that feel so alone!
All those people that have no idea where to go or who to speak too!
We are not all the same…one-size does not fit all!
There is so much work to do, I know it’s not going to happen overnight, but if biscuits, the name of a group is the most important topic of this group…I really don’t think I want to be involved!
Dementia Support should be the main topic…How we are going to bring a service for those living with dementia, how do we get spread the word.
Thinking of support
Dementia Support should fit the person.
Our abilities and sensory needs differ. An activity that’s perfect for one person may be inaccessible or exhausting for another.
So what does meaningful support look like? For me I think it should really be person-centred, built around the person. It should be less about ticking boxes and more about creating opportunities.
It’s not all about singing sessions, there are lots of other ways to bring enjoyment
Supporting people well means LISTENING
Singing is a joyful way to connect for some, but it’s not all about singing.
We need to make positive changes in the way people are supported when living with dementia.
The real work is paying attention, offering meaningful choices that reflect the people’s lives.
We need to move beyond the assumption that “one activity fits all,” we need to unlock ways for people to be seen, heard and valued!
More people need to listen to a variety of experts…The ones with lived experience.
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Wednesday 11th March, I wake around 6.30am. I can hear the birds singing in the trees and also the dogs pacing up and down outside my bedroom door. Eight paw’s always sound so loud on vinyl flooring , tip taping around while the world is still sleeping
Toby and Sooty are impatiently waiting for breakfast and an early morning walk.
I unwrap myself from my duvet cocoon, leaving the warm coziness behind.
Both dogs are now excitedly running around my feet…swear they are trying to trip me up!
I feed the dogs and make myself a cup of tea. My cup of tea is always prepared with sugar and teabag by hubby before bed, this is so I only have to add water in a morning.
After a few mouthfuls of black tea, the dogs are giving me the eye “ come on mum, get dressed we need to go out”
It was around 7am when i stepped outside into the cold morning air.
All is quiet on the lodge site, apart from the sounds of the birds. We are so lucky on this site, there are quite a few open fields for the dogs to run around in which are close to our lodge, which makes things easier for me to find my way back.
After a couple of days of walking, we have decided to take things a little easier today.
I’m quite tired after covering 12-13 miles walking and sightseeing over the last couple of days.
Wednesday morning was spent at the lodge, where hubby made a full English breakfast for brunch. Then after brunch we set of for a gentle walk around a local nature reserve.
Unfortunately not many bird around today, not that were still enough for a photo! Hubby managed to capture a Chiffchaf though.
I only managed fungi and trees
Forest trees and sunlight can be quite interesting through the leafy canopy. The shadows casts lots of shifting patches that dance across the mossy path. Every shaft of light catches small details like fungi between mossy branches.
To say we was having an easy day we still walked around 4 miles.
The rest of the afternoon was spent in the hot tub…
Think someone else wanted too join us too!
Thursday 12th March
I woke a couple of times during the night with the wind howling around the lodge, apparently there is a weather warning in place today for wind and rain, we still made a decision to venture out though. After all it our last full day in Wales so we don’t want to miss out.
Just after 10am we arrive at Flint Castle, cloudy skies but fine.
Flint Castle was built 1277 by Edward I is situated at the edge of the River Dee estuary. Now crumbling, yet the walls and tower still give a strong sense of its past and the exposed tidal setting.
We spent quite a while exploring the ruins, taking photos and realising that the coast guard looking out over the river estuary wasn’t real! ( think we should have both gone to specsavers)
The castle also sits near a pleasant walk along the Flintshire Coastal Path, giving wide views across the estuary to the Wirral and Liverpool Bay, with the marshes revealing lots of birdlife.
Teal, 2 Red Shanks , Black tailed Godwit
The walk was great for me as it was on one level, no hill climbing thank goodness.
We had a wonderful morning walking, exploring and bird watching.
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Our first day – Monday 9th March 2026
On our way to Wales we had a brief stop in Chester. We took a short walk from the car to the banks of the river Dee, where I was captivated by how many cormorants were fishing, and preening themselves in the sun.
Further down the pathway away from the sound of traffic, the world seems to soften. Gone are the gassy fumes from the cars, now we could smell the sweet perfume of spring flowers and early blossoms.
Weeping Willows line the river bank, flower buds starting to unfurl, we spot the occasional clouds of white and pink blossoms.
We head over the river taking the Queen’s Park suspension bridge. This suspension footbridge features attractive lattice work which would lead us to Grosvner park
Spring flowers push through the grass in cheerful clusters. Daffodils gently nodding in the soft breeze, clumps of colourful crocus and the bright red tulips stand so tall and bright.
Squirrels…So many squirrels! They provide us all with a constant entertaining distraction. One launched himself from a low branch with confidence…They are like a little acrobats, with their fluffy tails that act as a counterweight as they scurry up the trees, jumping effortlessly through branches. Two younger squirrels were tumbling through the grass, then paused to sit back and nibble at a nut they had just found, then all at once they race off in a grey blur.
Above and around is birdsong, it’s a layered chorus of soft sounds that seem to come from everywhere.
Then it was time to head back towards the car taking the pathway along side the River Dee with its steady whispering waters. I had to take a last glance back at the cormorants before we stepped back on to the noisy road.
Funny how your world of normality can change in an instant bringing so many new views, smells and noises.
We continue with our journey arriving at our lodge just after 4pm.
The lodge park looks very well maintained and clean, everything looks quite new.
Love opening the door to a lodge…Always brings back happy memories of when we owned our own lodge and the years of many happy memories made, it was our lodge that brought us to where we live today.
Our holiday lodge for the next 4 days did not disappoint, clean, modern and bright with the added extra of a hot tub…We were very happy!
Tuesdays 10th March 2026
After a good nights sleep our day started with an early morning walk with the dogs around our surrounding area.
The Welsh countryside looks like a living patchwork of joining fields, rolling hills, some of which are divided by drystone walls or hedgerows. We could see the peaks of the hills and mountains in the distance, they looked so worn and rugged.
After our walk it was time for some food before we headed off to find the Rhaeadr Dyserth Waterfall, must say I do love watching and hearing a waterfall, so when we pulled up in the carpark I was a little excited.
After paying our £1 each in the honesty box, we enter the pathway to the waterfall.
We walked alongside a shallow stream lined with daffodils, there a little bird sat on a moss covered rock, we both looked at one another as I slowly lifted my camera to excitedly capture a photo, I had realised that the bird was a dipper, one species I had never had the pleasure of capturing through the lens of my camera.
The little bird did not seem startled, in any way, it was like he knew I wanted a photo so badly, he actually posed for me for quite sometime.
After lots of photos of this little Dipper, I decided enough was enough.
Tearing myself away was difficult, then i caught a glimpse…A yellow flash in front of my eyes, a little grey wagtail landed on a rocky cliff face. Now my ears were drawn to the sound of water
The sound of the water was thundering over a rocky lip, falling like in a silver veil, splashing into a misty frothy pool below.
The air was now damp with a fine spray filling the air. The constant roar from the force of water makes my heart pound or was it the thought of having the walk to the top of the waterfall that was making my heart pound!
We headed off up a pathway lined with steps, breathing starting to get more difficult so plenty of stops along the way.
We finally making it to the top, me making the joke of “you are trying to kill me”
We both laugh.
At the top we look out through the treetops at the spectacular open views.
Time to make our decent through the woodlands and back to the carpark. I couldn’t leave without going back to have one last glimpse of the waterfall
Off on our next point of call…Point of Ayr on Talacre Beach
As we arrive we can see the sandy sculpted sand dunes rise and fall in rippled humps, the tops of the dunes sprouting tufts of coarse beach grass, lining the boardwalk.
A fence with wooden post makes a wonderful perch for a friendly Stonechat, who sits soaking up the sun’s rays making him stand out from the grassy backdrop.
We follow the boardwalk then veer off though the sand dunes, feet sinking in the soft golden silky sand, as we reach the top what a wonderful sight…A band of golden sand stretching for miles, sun now breaking through warming our faces.
A compact lighthouse, white tower with a bright red lantern and gallery dominates the skyline above sand dunes and the beach.
Point of Ayr lighthouse stands at the tip of the Dee Estuary, Talacre Beach
After a lovely stroll along the beach, Toby and Sooty playfully chasing one another, it’s time to leave the beach and Point of Ayr Lighthouse behind
Feeling tired, it’s time to head off back to the lodge to refuel and relax…I can definitely feel the hot tub calling!
Too Young for Dementia? 