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“I try my best to remain positive whilst living with Early onset Alzheimer’s…but sometimes…dementia really stinks!
I suppose the above sentence says a lot. It still contains hope but also honesty. And I suppose positivity is a powerful tool to have if you can keep hold of it, it can help you find a meaning and enjoy the moments that keep us going.
Sometimes my positivity does slip, I can’t remain positive all the time, and I do think it would be unhealthy to do so. If i was to say everything was ok all of the time, It would just feel like I was pretending everything was ok all the time…But it’s not!
There are days when dementia takes more than it gives, especially when the confusion and anger takes over.
I’m Acknowledging both sides of dementia…Only trying to be resilient I suppose.
Today Sunday 18th January DEMENTIA STINKS!
It’s not just loosing words, names or some of my memories today.
Dementia today is humiliating and terrifying!
Living with and also watching and listening to a loved one suddenly loose control of their world around them, is scary.
Today stirs up that unwelcome visitor…Dementia!
Tensions, confusion…
The Positivity I try to carry is slipping away, because positivity doesn’t erase feelings.
I know It’s okay to be angry, sad or frustrated but how can I balance watching a loved one deteriorate and keep myself sane when living with dementia.
How can I try to stay balanced when the disease stinks!
Trying to stay focused on what brings joy, is really difficult sometimes, when all you can see around you is the destruction of dementia. Everything becomes overwhelming, those feelings I have are now arguments in my head. I am fighting with positivity and dementia.
I’m struggling with processing.
Dementia is winning today!
The explosion of frustration, anger, and sadness erupts like a volcano, pouring out in a scalding, unstoppable flood.
This is where dementia feels lonely, this is where is hard to make people understand…to understand how it feels when your head is in bits when you have no control of what comes out of your mouth or your actions. It’s where dementia takes pleasure in hurting all those you dearly love and there is nothing that you can do.
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Please don’t describe me as a sufferer just because I live with dementia
Lots of people describe or say the words sufferer when talking about a person whom is living with dementia. But the word suffer doesn’t sit right with me.
A sufferer to me is someone who experiences pain, or distress…I’m definitely not in pain…Living with my sidekick is not painful in anyway, my sidekick is just a bloody nuisance!
I don’t suffer, I live with my sidekick Alzheimer’s thats a big difference.
Yes, I have my challenges. Some days are harder than others. I might lose track of my thoughts. Sometimes I need a little more time, or a gentle reminder, or a quiet moment to gather my thoughts. That’s all part of my life now.
But that it isn’t all of it.
I still laugh. I still love. I still play my favorite music…Loud sometimes! I even dance around like no one is watching!
I still find beauty in the world around me, enjoying walks with my dogs.
So when I hear people say I suffer from Alzheimer’s it grates, puts my teeth on edge… I want to shout “ I am not suffering “…Do I look like I’m suffering!…No!
Look at me do you see me writhing around in agony or pain?
I think I prefer the word struggle, because being realistic some days do feel uncertain, and I wish things were easier, I do feel like I struggle…I don’t suffer.
I adapt, I learn new ways to manage, and I keep going. I wouldn’t call that suffering…I’d call it living, living to the best of my ability.
Living with Alzheimer’s doesn’t take away everything that makes life meaningful, and I take so much joy from the smaller things in life now.
I still have hope, I still have dreams, I still have feelings and one of my feelings is not suffering
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When I heard those words in 2019 “You have dementia,” everything around me seemed to slow down, disconnect, my thoughts and dreams, everything scattered into a thousand directions.
So many words thrown at me…treatment, research, and care plans for the future, all of which is important. But for someone just receiving a new diagnosis, it was all so frightening. A few weeks later when the diagnosis was sinking in, I had so many questions I needed to ask, but who was going to answer them?
Receiving a dementia diagnosis can feel like losing your footing. Suddenly, simple moments which I once took for granted…remembering a date, finding the right words, all become reminders that something is changing.
There’s sadness and fear.
With time, I’ve realized that life doesn’t stop after a diagnosis of dementia. It just takes a different different direction a different rhythm.
Beneath the memory lapses and word hesitation, I’m still me.
I haven’t disappeared, I am the same person and I definitely don’t need fixing!
You can’t jump in and fix what can’t be mended, but you can make life easier by walking with me.
We have to guide each other through this dementia chapter
We will laugh
We will cry
There will be good days and not‑so‑good days.
We still have memories to share, we will still have a connection.
I know this chapter of my life will affect all those who are close.
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I apologise for the long blog and the croaky voice
Looking back on 2025 would never be short
All I can say is thank goodness for photos!
I have said many times photos are great for jogging the memory, well most of the time. I say most of the time as I do question some of my photos now…Where? When? Are you sure I did that.
So here I am looking back through photos 2025…Also gives me an excuse to share…
January brought fabulous sunrises and sunsets
I am also still seeing some of my photos on TV
The star has to be Toby whom always poses so well…Toby is definitely a natural when it comes to a weather photo shoot!
February 2025, I was busy with designing cards and bookmarks for DementiaUK
I was so excited when I opened the post one lunch time, only to find the card I had designed for DementiaUK
I couldn’t quite believe people would soon be receiving a card with my actual design on the front and a smaller version of the design on the envelope. I was so chuffed with my little self!
I was also lucky enough to meet up with Keith whom is a wonderful Ambassador for DementiaUK, we had messaged and emailed but never actually seen one another face to face, so this was a real treat
Keith holds lots of groups, raising awareness around sports and dementia. Such a wonderful caring man.
February brought Valentine’s Day, and my beautiful swan photo makes the ITV weather
Talking of weather, we had some very high tides bringing the waves crashing in!
Me and hubby was very luck to receive a holiday that was gifted to us at Centre Parks near Penrith. What a wonderful time we had, I was in my element surrounded by nature.
Red squirrels and Birds of prey had to be the highlight of those 5 days
From holidays to appearing on TV
March 2025 I appeared on BBC Morning Live programme, funny I can’t really remember much of that interview, in fact I had forgotten I had done that, until I came across the photos!
March I was invited to give a talk, I was only expecting around 15- 20 people. Turned out to be a 3 course meal where 80+ ladies would be in attendance…Wow! That was a little bit of a surprise! Anyway my talk was received positively and the response is still talked about.
More work achieved working with DementiaUK
After a busy few months April was time to spend time with family
May 2025, Toby still top of the shop on the ITV weather
I’m getting involved with Trinity Hospice as a volunteer with Maxine and Julie from the Admiral Nurse Team, even met up with Anne Nolan from the Nolan Sisters, whom was so lovely.
Me and Hubby managed some time together and took a day trip to York, it was such a beautiful day, it was sweltering!
I entered an art competition and to my surprise won! I received vouchers for art supplies which was very great fully received
The end of May 2025 and the beginning of June 2025 we managed a few days away in The Lake District…Bassenthwaite was our destination and it was so beautiful, we loved it so much we are visiting again very soon
June I was also interviewed by Radio Lancashire and the recording went live 4th June, can I remember what it was about! Can I heck!
June 2025, me and Hubby had a short break to do a bit of bird spotting on the Yorkshire coast…Bempton Cliffs is a favourite of ours for spotting seabirds
July 2025 was the LEAP face to face meeting in Birmingham. This year I was joined by my Admiral Nurse Maxine, hoping that having someone with me would calm my anxiety. Unfortunately it was not meant to be …Anxiety and Dementia took over!
August 2025 brought the Airshow to Blackpool, always a good excuse to get my camera out, and this year one of my photo made it onto the ITV…I was ecstatic!
September 2025 was another short break for me and hubby in quite a spectacular lodge in
Another radio interview which I did from the lodge
October 2025 a weekend away to Wyresdale Park and it was the wettest weekend away ever. That didn’t stop me and hubby, we drove through floods, torrential rain to reach our destination. The morning after we arrived the rain had thankfully stopped. This is also the weekend that we walked around Stocks reservoir!! I can still remember how exhausted I was, don’t think I will ever forget that day…Hubby says I won’t let him!!
November 2025 and Thanet Well Lodge retreat near Penrith, it was a beautiful tranquil place with interesting places to visit nearby and we would definitely visit again!
December 2025, I sold a few crafts and my daughter helped by doing a tombola to raise funds for DementiaUK. We managed to raise £370 in total.
Christmas arrived and before i knew it another year was over…Wow we packed so much into the last 12 months and that’s only what I can remember from looking through my photos.
If you have a camera or a phone, do take lots of photos they can be valuable for many reasons. I use photos to help me capture moments i might otherwise forget. My photos are a visual record, a record of the passage of time, people, places, and even myself.
Photos are memories never to be forgotten and can be viewed at anytime, always bringing so much pleasure.
So now is the time to start snapping making your own visual records of 2026
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I can vaguely remember a medical professional commenting on someone’s post “ you can’t have dementia if you can describe what dementia feels like”
I quietly mulled over this statement, then it was forgotten about until today. For some reason I started wondering “could this statement actually be true”
When I describe how dementia feels to me, it could be because I’m still aware of what is happening at that specific moment. Then again there are times when dementia affects not only my memory, speech, and word finding, also my self-awareness.
So when I describe how dementia feels for me, perhaps its when I have more clarity, when I feel almost normal, or is it the feeling that I remember at that specific moment that brings back the memory?
I can remember sometime ago being in a meeting. I was asked a question, I went completely blank! I can remember opening my mouth to speak but no words would come out of my mouth. I have no idea what happened that day, all I can tell you it was a strange feeling, but i cannot tell you why I was unable to speak.
It was one of those moments I was truly out of control…What ever happened did not feel normal. I felt embarrassed and stupid and even though I was with people who knew I was living with dementia, it knocked my confidence for a while.
I suppose I do have moments of clarity and confusion and there will be times I have no idea why I act, say or do the things I do.
Dementia is a strange one…I can still remember loosing that pair of scissors that took days to track down, eventually being found in an obscure place. So why could I not I remember where I put the scissors in the first place!
I can remember sitting on my glasses and breaking them. So why could i not remember I had left my glasses on the chair before I sat on them!
Only last night my word finding was problematic, I was talking about a photo i had seen on Facebook, it was a familiar place local to where we live…I know this particular place very well…The pleasure Beach
I just couldn’t remember the name of the place in the photograph, the more I looked, the more I panicked “what’s the place”
I was secretly panicking inside, a place so familiar, yet i couldn’t remember what it was called.
Staring at the photo intensely did not bring any words…In the end I had to show hubby the photo and ask what it was called.
I can remember how in that moment i was aware I was struggling to find the right words but i couldn’t remember the name of the place.
These sorts of things are happening more now, names of people and places have now become
“you know him, him with the hair” as I proceed to wave my hands around
“Whatchamacallit”
“ That thingamajig”
I think what I’m trying to say is…Yes I do have moments of clarity and also confusion, where I know something is a miss.
Remembering also comes with feelings.
How that moment made me feel…Was I angry, happy, anxious and for some reason the negative feelings always outweighs the positives.
I have noticed over the past few months little things are now becoming more challenge.
Tasks that were automatic are now causing anger and irritation. navigating access into meetings for instance, somedays it’s automatic, other days it can be an absolute nightmare where I just can’t seem to navigate the process.
There are changes occurring that I may not be aware of until someone points them out.
I do stay at home more now, apart from my very early morning walks with my dog, which are taken when there is no one else around.
I feel calmer and much more comfortable in my own home, it’s my safe haven, and if I’m really struggling, I will take myself off to my bedroom or my craft room…This is my space where I can be alone.
I sit here writing this blog trying to think of how I had navigated this particular morning, all I could come up with…I got angry at the Christmas musical toy that I couldn’t get to work, oh and hubby made a full cooked breakfast.
I suppose there will have been lots of other things done that day, but those two things are the ones that stuck in my head.
Even when my words and my recall memory starts to fade, I am still able to hold on to certain memories.
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After reading this piece below on social media, it made me realise, Christmas brings up so many emotions for people, and It’s ok to be different, that’s what makes us who we are.
(The piece was written by my daughter whom has two beautiful boys whom are both autistic)
So christmas is very different for everyone and in our house. We don’t get excited for Santa, we dont ask for presents, it’s just a normal day with lots of brightly wrapped presents, taking up our living room. Zach is not interested in presents he just wants a normal routine, he isnt ungrateful, he is just overwhelmed by it all. Adam likes to open everything as quick as possible and hasn’t got a clue what he’s got or why really, but Adam did say “it has been the best Christmas ever!” Oh and Adam’s favourite presents was the cheapest! Our Christmas dinner for both children was chicken nuggets and waffes and that is absolutely fine! Just remember how ever you do Christmas or dont do Christmas it’s all absolutely fine!
This really hit home, as there are so many people in that big wide world of ours that will find Christmas overwhelming for whatever reason. Christmas over the years has definitely changed. Who can have the newest trends or the latest fashions, the most expensive gifts. We are even expected to celebrate in a certain way. If you’re different it is sort of frowned upon.
From a young age, many of us are taught to blend in, to adjust to where we are, to behave in a certain way so we are accepted and don’t stand out. The truth is, difference isn’t something to hide. Being different is not just okay it’s essential.
Each person carries a one-of-a-kind combination within themselves, your talents and quirks. It’s these differences that makes us who we are…Just think it would be a very dull world if we were all the same!
Think of each other as a piece of art, variety is what gives art its color, music its rhythm, and life so much texture.
Being authentic and real might be what someone else needs to see to feel safe, and to be themselves too.
It’s so easy to scroll through social media or look around at others and feel like we fall short, we are not good enough, or god forbid we might stand out and not be accepted. Everyone’s story is unique, we shouldn’t be comparing…But the truth is , we do!
Being different can isolate us at times, especially if others don’t understand. But just think about every voice that has sparked a change, every inventor , every artist, every person that has dared to create…Yes all of them dared to be different and will have made a change!
Being different is essential to move us forward. If only people would learn to accept “it’s ok to be different”
Accepting differences would help us to possibly accept others. We need to stop judging ourselves so harshly. The world doesn’t need us to be carbon copies of one another, we need to be fully ourselves…Not hide away!
Christmas this year brought to the surface that being different makes you stand out for all the wrong reasons. I realised that some people find it so hard to face up to our differences, so they will push us aside and ignore us …Why? Because it’s easier to do that rather than face and accept someone is different.
So, the next time you feel out of place, remember this: you’re not meant to fit in perfectly…No one is perfect! You were made to stand out in your own way, each person brings something to the world that only you can offer.
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Finding My Way Through Christmas.
Every year, as Christmas approaches, I feel that familiar mix of excitement, nerves and anxiety.
Im always so excited when the 1st of December arrived. I love to decorate our home with the sparkling red baubles that adorn our tree, the white lights glistening like diamonds, the garlands, strategically placed above the door frames…The smell of Christmas.
I just love it when the Christmas lights start to go up on all the houses nearby, making everything so bright and colourful.
Shops all filled with the latest decorations, and for a moment, it all feels so magical.
I remember the years when Christmas was so joyful, when I could keep track of everything without it feeling overwhelming.
Christmas morning all the family would be sat around opening presents, then later in the day we would all sit at the table, jokes and stories told as we filled our bellies.
Now living with early onset dementia, Christmas can feel very different. I still love parts of Christmas, but the busyness, the noise, the lists, the changes in routine, really stirs up lots of anxiety.
I now struggle to keep up with the planning, the presents, conversations, and remembering what still needs to be done. This part of Christmas becomes harder every year.
Then there’s the family side of things. With a split family, Christmas can sometimes feel like two different worlds pulling me in separate directions, it never used too. Now with so many different homes to visit , all the different expectations and traditions. It’s impossible to please everyone. The logistics alone can feel exhausting. Yes, there is part of me that misses when everyone was together under one roof, but sometimes we have to be realistic it just not viable, we simply just can’t accommodate, please everyone and keep my sidekick under control.
All the family has to realise our life has changed…everyone’s life has changed! Christmas is no longer the same!
Christmas isn’t easy when you don’t have dementia so why should i pretend it’s easy when I’m living with dementia…I can’t be full of cheer every moment. Some days, I just want to be quiet, I can’t cope with the rooms full of people with all the different conversations flying over my head, you know the ones, where people talk over you, not even making eye contact.
There are still the nice moments in between the chaos…It’s when a person realises you’re struggling and reaches out with that simple hug. The ones who do try to understand how difficult dementia can be.
I’ve had enough of feeling rough from anxiety
I’ve had enough of shedding tears in silence
So yes, I was glad when Christmas was over.
Not because I don’t love Christmas, but because once it’s passed life can slows down again…I can rest…I can breathe.
Christmas is just not the same anymore and that’s ok
Christmas doesn’t have to be perfect to be meaningful. It just has to be real and there is no rule that Christmas has to be busy and hectic to be special.
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Wishing you all a “Happy New year!”
The New Year is far more than just a new calendar, it’s a fresh start, a chance to begin again, and another opportunity to hope and dream.
The past year has brought many ups and downs, lessons learned, and memories made. It was a year of many challenges and also triumphs.
Now January 2026 feels like a new beginning, with more new opportunities on the horizon.
A new year also makes me realise, I need to make time for those who truly matter and to embrace each and every moment that brings joy, not only to myself but to others too.
When living with dementia it’s the small victories that deserve to be celebrated, whether it’s achieving a personal goal, spending quality time with loved ones, or simply finding a little bit of peace.
I sincerely hope your days be filled with health, happiness and endless reasons to smile.
Here’s to sharing new adventures, new opportunities, and another year of blogging, all waiting to be shared .
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Well here we are …It’s nearly Christmas Day!
As Christmas gets closer, I find myself reflecting on what this season means, when you live with or love someone who has dementia Christmas can be full of mixed emotions.
One thing I am great full for is that I am still here enjoying life.
Christmas for me, isn’t about perfection, It’s about slowing down to capture those simple precious memories.
It maybe something simple like a Christmas Carol that brings back wonderful memories, the sparkling decorations, the twinkling lights that glow from house to house, the joy and happiness on faces we love, as we exchange and open gifts.
Christmas, is about how you as a family wish to spend your day…After all, we are all different.
To everyone who reads this blog, I want to say thank you, thank you for joining me on my winding road of ups and downs.
Thank for all your comments and sharing your own stories with me, and most of all, thank you for reminding me that we are never alone.
Wishing you a peaceful, gentle Christmas filled with joy, warm memories, and moments of calm within the chaos.
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How did this all happen, how did I fall into campaigning, talking and raising awareness of dementia.
If someone had told me that I would be speaking publicly about dementia, I would have laughed in disbelief. Campaigning was never something I imagined myself doing. But life has a way of leading us down unexpected paths.
My journey began in 2019, when I was diagnosed with early-onset Alzheimer’s. That moment changed everything. At first, I was overwhelmed, depressed, devastated. I was trying to take in what this meant for me, my family, and the life we had built.
I searched for information, for people who understood. That’s how I found my way into online peer support groups.
Those groups quickly became a lifeline. I met others who were walking the same uncertain road. Together we shared our fears, our frustrations and also our victories of learning new things. It helped me see that I wasn’t alone and even living with dementia, there was still laughter and a purpose.
Somewhere along the way, talking about my experiences stopped being just for my own benefit. I noticed that when I spoke openly, people listened. I hoped they would gain a better perspective, a better understanding.
The more I shared, the more I realized how powerful personal stories can be in changing how people see Dementia.
Before I knew it, I was saying “yes” to opportunities to speak, to write, and to tell my own personal story and offer my perspective.
Each time I speak, I see the shock on people’s faces, the impact of what speaking out brings, also I learn a little more about myself and about the misconceptions that still surround dementia. People often expect a diagnosis to mean the end, but I’ve made this my new chapter. The chapter of new opportunities, because my life is far from over.
I didn’t set out to be a campaigner or an advocate, it all just found me.
If sharing my story helps even one person feel less alone or changes one person’s perception of dementia, then every conversation, every blog, ever piece of I created art, every talk is definitely worth it.
Too Young for Dementia? 