Monday 18th May 2026

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When people say…

“ You’re so brave”

“ I don’t know how you do it”

“ You’re doing really well”

“ Aww, you would never know you was living with dementia “

Comments like these are not support! They don’t make me feel any better…Infact they have the opposite effect

Saying “You would never know you were living with dementia” might sound like a compliment, but it can be deeply harmful. Yes, you might think you are giving praise, but it often has the opposite effect…And it’s definitely not support!

This comment can be quite isolating and it’s just another excuse not to offer support. Just another abandonment disguised as praise.

Comments like the above can hurt, it’s like you are denying my experience. Dementia brings real losses, confusion, frustration, fear and loneliness. Telling me or anyone they “don’t look like” they have dementia can make dementia feel invalid or invisible.

When friends, family medical professionals keep acting like everything is fine, it makes it less likely to get the practical support, I may need to improve quality of life.

It also makes me feel i must hide my mistakes or downplay my struggles to keep receiving positive reactions, which in the long run increases my anxiety and reduces good communication. In the end it all becomes quite isolating.

Why is it so difficult to acknowledge someone’s needs?

People should be offering concrete help, instead of those vague compliments.

You should be focusing on each person’s needs not just assuming everyones needs are the same, so don’t brush my struggles under the carpet or anyone else’s struggles, face up to supporting

It’s okay to have bad days and needing help doesn’t mean anyone has failed.

Resources should be available, there is no need for a crises if the correct support is set in place.

People should think before speaking, sometimes that well intentioned praise can erases your reality, and is just another form of abandonment.

True support balances respect, honesty, and practical help, and the needs of the person…Don’t pretend dementia doesn’t exist, by giving praise.

We need support!

Monday 11th May 2026

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Over the past few months, I’ve shared several times how challenging it has been to maintain the routine of blogging, attending meetings, and consistently creating art.

With that in mind, I wanted to let you know that my blogs may not follow the usual schedule, and my artwork might not be published on specific days as before.

I’m allowing myself some breathing room and adopting a more relaxed approach to my structured lifestyle.

Please don’t worry, I’ll still be posting blogs and sharing new pieces of artwork, just not as frequently.

I appreciate your understanding and continued support as I take this step back.

I hope that, in time, this new rhythm will help me bring even more creativity and passion to my work, and I look forward to sharing with you all ….just not as often.

Friday 8th May 2026

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We all watch out for a bargain…That bargain that brings a special kind of excitement. It’s not just about saving money, it’s the actual thrill of discovering…It’s like a little victory

So when I was searching online for 2 bathrobes and found some at £2.50 each, it was an offer I couldn’t refuse…I couldn’t believe my luck!

It always feels so good finding a great deal, it’s like a little boost for your self esteem. It’s like you can’t wait to brag about the remarkable find.

So when hubby came home from work, my mouth went into an excitable overdrive “ guess what I found the best deal ever today, two bathrobes for £5.00 and with postage under a tenner!”

I must say hubby was a little surprised, but he didn’t question.

A couple of days later I received a email confirming dispatch, so now I’m excitedly waiting for the delivery

A knock at the door, Sooty does his 2 barks and runs into the kitchen…

Me I can’t get to the door quick enough…Woo! Delivery and it’s the bathrobes.

The parcel is handed over, this is where my brow furrows, I become puzzled, this can’t be right!

I quickly open the packet and there inside sits two toweling bathrobe belts! Yes Belts! No Robes…Just Belts!

What have I done!

I quickly check my email and then the website…surely I can’t have just ordered belts

There it was in black and white, how stupid did i feel!

My brain obviously wasn’t working correctly

So in the end, the excitement of finding a bargain turned into embarrassment.

Me and hubby did laugh!

I didn’t get a bargain after all!

Monday May 4th 2026

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Am I / are we penalised for trying to live well with dementia?

In my opinion and experiences, I would say YES! Which includes health care providers and people in general

Living well with dementia means that I find ways to keep doing the things that matter. I adapt, I make changes, and I try my best to staying active.

I still do household chores and gardening. I’m also involved with online Lived Experience Groups…

I’m just trying to stay as independent as I can.

Yet trying to live well and remain independent clashes with how some health professionals and family members look at dementia. Lots of people still think a person living with dementia “should” look and possibly behave totally differently to me.

I suppose me and the many others whom are trying to stay independent for longer are penalised, because we are too independent!

What is so wrong with staying independent and not wanting to rely on others for the things we can still do!

I suppose this is where those cynics come rushing in saying we don’t have dementia…If we can still clean and push a vacuum we don’t need support.

People and healthcare professionals should be looking at the whole picture, just because I can push a vacuum and communicate doesn’t mean I don’t have dementia or I don’t need support.

Trying to retain freedom, like driving longer, cooking, dressing all goes against old fashioned perceptions of dementia , but what people and healthcare professionals don’t see are those days when we can’t, cook, we can’t function, because we are confused, and consumed by dementia.

Lack of education and stereotypes, unfortunately still exist.

We should not be ignoring those whom are trying to live the best way they can, they are the ones that are working so damn hard to stay independent longer!

We should reward independence, not penalise!

We need more understanding, that living well with dementia looks different for each and every person living with dementia

Trying to live well with dementia and taking responsibility, for adapting your life, should be celebrated, not punished.

Independence and support should, go together.

Just because people adapt to their own needs to remain independent longer does not mean they don’t have dementia

And it certainly does not mean they are ok and don’t need support

Never penalise for having a disability and try to live well

Dementia was not my lifestyle choice, but I should be able to choose how I live with it!

Monday May 4th 2026

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I have struggled with finding connection throughout my dementia chapter, which brings me to talk about how we can best support and promote a positive good life after a dementia diagnosis.

It’s ok saying peer support is one of the best ways to support people…What if the person living with dementia is not one for attending groups, or simply there are no groups available.

What people sometimes forget is, not everyone is interested in joining groups

I would never have joined a group before my dementia diagnosis, so why would I change now!

Also as the years pass and my sidekick changes, I change.

Today I can’t think of anything worse than walking into a room with people I don’t know…I like and need familiarity.

I’m lucky that I have online group that I can connect with, which works for me. Sometimes I do miss the personal connection, perhaps it friends I miss rather than a group.

So how can we support those whom are like me, those whom don’t want to go out of their comfort zone…their own personal space…their home!

How do we reach them, how do we combat the felling of loneliness and isolation?

I ask myself over and over…If there was the perfect support for people living with dementia what would it be…

Perhaps start by looking at each individual, because each individual is different and unique

If money was no object everyone living with dementia should be assigned an DementiaUK Admiral Nurse and also a companion for those who need just a little extra the support

How do we tackle this problem …

Honestly I don’t know, raising awareness around dementia and seeing any results, is a very slow process!

I do know one thing …Real Life Stories have a bigger impact. Not false advertising made up of actors…It is the real people, people with lived experience that make a difference…Real people captures attention.

The main set back for anything is funding and where dementia is concerned, its way down the funding list!

Then when you’re living with dementia and you challenge, or even highlight that you can still live a meaningful life, some will challenge you back…Would anyone challenge someone living a meaningful life with cancer? …Probably Not!

We should be respectful of each individual, each person’s strengths will be different, what I can do will be different to what someone else can do.

I am beginning to understand why so many give up when living with dementia and opt for a quieter life, because it can be tough out there in the big wild world trying to adapt and live well with dementia. A quiet life is not for me though…Not yet anyway. I need to stimulate my brain, so I can hopefully slow the progression of my sidekick.

Yet I get so tired of trying to live my best life, fighting to find ways to keep my sidekick at bay, plus having to explain myself , whilst also being ignored.

My Dad whom is in 80’s lives with dementia, he says “ I’m a nobody now”

This is exactly how I feel sometimes.

Heartbreaking to think, how many others living with dementia feel the same way too!

Monday 27th April 2026

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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.

Friday 24th April 2026

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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.

Monday 20th April 2026

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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.

Such a happy couple of hours

Friday17th April 2026

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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.

Monday 13th April 2026

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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!