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Simplicity often makes our message clearer and more powerful.
Some people however just to like to baffle you with big fancy words… I’m a simple word kinda person. I speak from the heart, hoping my simple words have a deeper meaning, perhaps even a bigger impact.
It’s the same when reading, people often think that using big fancy words makes our writing smarter. But in truth, it’s the simple words that often have the most power, because simple words are much easier to understand.
When we speak or write from the heart, people listen because they feel your honesty.
Those big complicated words shouldn’t be about impressing others…Words should be about reaching every single person out there.
Not everyone is educated to the highest level.
I don’t want to be reading words with a dictionary or google on hand, I don’t want to have to work out what the abbreviations mean, because by the time I’ve worked out the abbreviations, I’ve lost interest and also which paragraph I was reading!
The use of our words is about connecting, how we communicate is about how we connect with others…Who is it that you want to connect with?
Not everyone has the capacity to understand big words
We talk about treating people as equals, we talk about including everyone.
You are not including everyone if people don’t understand!
I have taken a couple of examples
Complex sentence – Early detection of dementia is imperative. To receive a timely diagnosis gives patients and families a chance to plan for the future.
Simpler version – An early dementia diagnosis helps people plan ahead.
As my dementia progresses, it makes the understanding of words much harder to understand, say, read and spell.
I loose my words, they becoming burried under a dark cloud filled with mixed up letters
I need things to be simple.
If things were simple in the first place everyone could understand.
Simple words when said or written carry something so strong, especially when they come from real feelings and genuine thoughts.
They touch us…Most of all simple words allow others to understand too.
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There’s lots of conversation today on TV, Social Media about the importance of speaking up, sharing your feelings, and not bottling things up inside, which is a wonderful shift from the days when vulnerability was seen as weakness.
Talking can be powerful, It builds a better understanding, hopefully allows healing too.
While we encourage everyone to “speak up,” it’s important to recognize that not everyone finds it easy to do so on their own. Sometimes, people want to talk, but they don’t know how to start. Sometimes, the pain or confusion that lies deep inside makes getting our words out feel a little impossible, it may feel unsafe or sometimes just overwhelming.
Sometimes we just need a person to reach out and ask, “Are you okay?” “Are you sure”
Sometimes all we need is time.
For me the people with big personalities, or larger groups can just seem too overwhelming for me to speak, especially when you have people with strong opinions that feel the need to take over. That’s when I shut down because I feel it’s becoming more like a competition to speak.
We often assume that if someone needs support, they’ll ask for it. Yet the truth is, when a person is struggling, asking for help can feel unbearable. It’s probably the last thing they will want to do. It’s that fear of not being understood or coming across as weak or a burden, or even a failure.
Opening up doesn’t always happen immediately. Sometimes, a person needs time, encouragement and most of all trust.
Asking once – is kind
Following up – is showing that you really care, yet sometimes, the best support is just being there.
Our mental and our emotional health grows in a community where people both Speak and Listen
Me, I always shut down where you have one person that takes over the conversation.
Encouraging and a creating spaces where people feel truly seen, heard and safe is the key, remember some will need an invitation to speak, some will not just come into a conversation as it’s not in their personality to take over.
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I have realised since my dementia diagnosis people are not as interested in my life before dementia, they only see my sidekick…Dementia.
Most probably my fault in a way because I have always been open and honest about my diagnosis and also when in meetings I always address myself as “ Gail, living with early onset Alzheimer’s”
What I should say is “ I’m Gail, i was a manager in Local Government for 10+ years. Then in my early 40 i had a change in career, I opened my own business…Scottie dogs & Bears4u was born and i became a very successful online retailer personalising many different products. Our bears traveled the world even making an appearance on the XFactor
Being a manager or owning a successful business didn’t make me any better than anyone else. May be I’m not the kind of person that blows my own trumpet, maybe I don’t think I’m good enough ( for reasons I don’t wish to discuss)
It doesn’t matter if you are a doctor, a dentist a teacher, a writer, a cleaner, or a factory worker, we all bring something different, we are all as important as each other. You should never feel belittled or less worthy than anyone else.
You are You!
Most importantly others should not cherry pick people, just because your education or job title is what they perceive better than someone else.
I have begun to realise just how much value people in society places on titles, jobs, or education. Having a good education is something to be very proud of, but it doesn’t automatically make someone wiser, kinder, or more capable than someone who’s learned through real life. We shouldn’t judge or pick out.
Some of the smartest, most grounded people I know didn’t go to university, they learned through hard work, raising families, fixing things, simply finding their way through life’s ups and downs…These people had so much real life experience.
I grew up surrounded by people who worked with their hands, who didn’t always have a higher education, spoke with big fancy words, these people always had manners and wisdom. They were the people who taught me my manners, kindness, and to never give up! You can’t put those lessons on a CV.
The real life experiences shape the person you are, and to me that’s what really matters.
We so easily assume someone’s education background tells us everything about them…It doesn’t!
A degree might teach you a lot, but so can life.
Either way, there is value in both.
At the end of the day, how we treat people says more about us than what we’ve achieved or what we own.
We all have something to offer, our life stories, our skills, even empathy. No matter where we started, we all have something important to give.
We shouldn’t be comparing
We should be appreciating.
Most of all Education and Dementia should never define!
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Having dementia doesn’t mean you lose your individuality or your self…You are still You! Your clothes and your own personal style, is still part of you!
A dementia diagnosis doesn’t mean you should loose your style in anyway.
One of the most personal ways we express ourselves is through the way we dress. Our clothes can hold so many stories throughout our years…Clothes are our own personal taste, our culture, and even our memories.
Dementia might change certain things, but it doesn’t erase who we are!
Fashion isn’t just about trends or neatness. It’s about identity.
That favourite jumper that makes me feel warm, cozy, those shorts that remind me of a holiday in Portugal or even the scruffy looking hat I wear for walking the dog. All these items carry comfort and Me!…It’s my personal style.
I know my style has changed as I have gotten older…I definitely don’t wear leather hot pants anymore!!
My clothes now are much more comfortable, I would say “still stylish”, but comfortable.
I now like clothes that are cozy and practical, I suppose I dress for the occasion. What ever the occasion maybe, walking the dog, shopping, going out for a meal, attending appointments…I’m me!
I suppose what I’m trying to say is…the best approach is to adapt, not abandon your own personal style…It’s finding that balance between practical and your own style.
I do tend to buy duplicates or as I call them backups! I hate it if I really like something and then it goes out of stock or they simply stop making the item, especially if it’s a favourite of mine.
I must say since dementia I do organise my wardrobe more, it’s just to help me navigate what to wear as I do struggle with making decisions, so having clothes in outfits and colour, helps me to choose.
I also have favourites or is it just familiarity, because I know a certain outfit is comfortable
Living with dementia doesn’t mean you have to give up your sense of style, you just have to find a balance of comfort and you!
Fashion isn’t just what we wear, it’s an expression of who we are and that should be celebrated at every stage of our life
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It’s 7.30 in the morning and time to take our dogs for their morning walk. Today we are off to the beach, time to let Toby and Sooty burn off some energy, before me and hubby set off on a little adventure without our four legged friends.
Today we are making a visit to the Morecambe Bay Nature Reserve, and also going on a bit of a ramble a to explore Jenny Brown’s point in Silverdale.
We wait for the school traffic to subside before setting off on our little adventure.
Being quite a nervous passenger and anxiety has a way of taking over, hubby shows me the route we will be taking to try and elevate some of the anxiety.
With hubby’s rucksack packed with camera, binoculars, food, drinks, first aid kit…and more! We head off.
The roads weren’t too busy, motorway and then on to some scenic country roads. I don’t particularly like the country roads, far too windy for my liking, but we wasn’t on them for long before we was signposted to the Nature Reserve
I was shocked when we had to pass through a very narrow low bridge…A little bit of panic struck …Will we fit through?
We did fit through, with not much room to spare I might add!
We have arrived! Boots on bags on our backs we set off!
My first click of the camera, capturing a photo of what a beautiful clear day it is.
We step onto a narrow gravel pathway, the ground is firm beneath our feet, the sun’s warmth kissing our faces. On either side, tall reeds rise in dense clusters, all turning a golden colour as winter approaches, their feathery tops gently sway. Sunlight peeps through the reeds, creating dappled patterns on the path. Above stretches a perfect, endless blue sky.
In the distance we can hear birds, geese calling this is where the anxiety is forgotten and the excitement begins, every noise draws me into that magical place of nature with its surrounding beauty…Time breath!
We find a bird hide and sit for a good while capturing photos, hubby with binoculars, me with camera. Our world has suddenly become narrower, the rest of the world fades leaving only what we see through the lenses and to my excitement it’s a Kingfisher!
He might have been a fair distance away, but this beautiful striking little bird stood out as the sunlight caught his plumage his little body sleek and vibrant, shimmering blues and greens and orange sparkled.
There he was perched, overhanging the water, alert and poised, watching with intense focus. Then, with a sudden flash of wings, he darts, a vibrant streak of colour leaves my focus…He’s gone.
What a moment…it’s these moments that have become priceless, it just lifts my heart, the excitement of a new discovery, I don’t scream and shout with excitement, oh no the excitement is held within, a warm glow circulating my body, a reminder of how lucky I am to be connected with nature.
After spotting an array of different birds and capturing many photos, some of which I might add are not the best! We head off to find the Kiln Tower and Jenny Brown’s Point
The walk is flat with a pathway that is slightly raised running through the marshes.
It’s so peaceful, not a single person around, well not until we reach the copper smelt kiln tower and then the odd rambler passes with a smile and good morning!
There are many tales around this chimney but in 2017 after an excavation at the site, it revealed a sunken ash pit, deposits of coal which supported the theory that this was definitely a furnace. Probably built around the 1780s by the lord of the manor and was likely used to roast iron ore and copper ore, which would be mined from the nearby crag. After taking many photos of the chimney and surrounding area we sat and had lunch, taking in the spectacular clear views.
After refuling we set off to find Jenny Brown’s point, which wasn’t that far away
Who was Jenny Brown? And why was it named Jenny Brown’s point?
Some say Jenny was a nanny who drowned trying to rescue some children that was in her care. Others say she was a lonely old woman who would stand gazing out at sea waiting for the return of her lover who was lost at sea.
There definitely was two Jenny Brown’s in the 1600s that lived at the nearby Dykeshouse farm, a mother and a daughter. No one really seems to know the truth but Jenny Brown, but her name will always be attached to this beauty spot.
The walk and time spent outdoors with nature has certainly been a pleasant experience today, I think what made it even more special was capturing so many memories on my camera to relive that walk another day.
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For many families, Christmas is the season filled with warmth, laughter, and family traditions. But some families, Christmas is not the season filled with joy and for those of us living with dementia Christmas can bring disruption, confusion, and emotional challenges.
The hustle bustle, the noise, and the break from our normal routine, all these things makes the whole build up to Christmas very difficult to navigate.
I used to love Christmas…The sparkle, the shopping, Christmas carols, Christmas films… I loved every thing about Christmas, I loved all the preparation…I thrived thinking of new Christmasy ideas.
How things have changed!
Now my sidekick is in tow…boy does he love to disrupt Christmas! The hustle and bustle, the preparation is now becoming unbearable.
It’s not that I don’t want to be part of Christmas, it’s just too overwhelming. I would love to have everything back to how it was, having all our family around the table, our children and grandchildren excitedly opening presents. The chaos, the laughter, the house overflowing with presents and most of all the laughter and the joy.
Now Christmas brings a kind of chaos that my brain struggles to handle.
As our our family dynamics changed, so did I …My sidekick appeared. An unexpected, unwelcome visitor!
And this unexpected visitor wasn’t just for Christmas!
The season that once brought joy, now brings a kind of chaos that my brain struggles to handle.
For me, I desperately need my routine as routines offer comfort and stability.
Christmas visiting or visitors can easily overwhelm me. Suddenly my living room (which once was a sanctuary) is taken over, by people, noise…chaos!
Visiting others can also be overwhelming, lots of people, so many conversations to follow. Music, tv, noise from toys and mobile phones…it’s a major sensory overload!
Even small things can throw me off track.
Trying to follow a conversation when my brain is already overloaded. I just feel myself shutting down, retreating. I suppose sometimes others could mistake my actions for not caring or being awkward, but inside I’m secretly screaming…my head is in overload mode!
What feels festive to one person can feel so unsettling to another.
Living with dementia has certainly changes how i experience the world, and that includes Christmas.
It’s like trying to celebrate in the middle of a snowstorm
It’s hard not to compare life to how it used to be…I miss being the one who hosted, cooked, and remembered every small detail. It’s just another small reminder of how much dementia can disrupt and take away.
The difficult part for me is trying to be honest with the people I love. To tell them when I’m tired, when I need a break, or when the noise is too much.
We now keep gatherings small, there won’t be any big family gatherings in our house this year, I need calm, comfort and familiarity. Our children have their own families to celebrate and make their own Christmas traditions.
Christmas with dementia is not the same, and pretending otherwise only adds pressure. What helps me is slowing down, letting go of expectations, and remembering that love doesn’t depend on memory, love is a presence when we feel connected in that moment even without remembering why
It’s ok to change Christmas.
So if Christmas feels unbearable at times, know you’re not alone. It’s okay to laugh, to step back, to cry, to rest…Be kind to yourself.
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When I tell people I have dementia, I often see the same expression cross their face, it’s a mix of surprise and disbelief. “you don’t seem like you have dementia,” “you don’t look like you have dementia”
Every time I hear those words it lands differently…
Because the truth is, I do and I am living with dementia …
Please tell me what does dementia look like!
My symptoms aren’t always visible. Some days, I can hold a conversation and manage tasks without anyone noticing the effort behind it. Other days, my brain feels foggy and heavy, my words slip away mid-sentence, names vanish, I lose track of time.
To the outside world, I still seem “fine.”
But inside, I’m constantly working hard to keep up with the world …The world that moves faster than my brain can process.
I’ve learned lots of little tricks to cope, writing things down, notice boards, diary, setting alarms, sticking to routines.
What people don’t realise is, all that takes so much effort and energy. It’s emotionally draining to put on a front, to look like I’m capable. While secretly, I’m quietly juggling those moments of confusion.
One of the hardest parts is not being believed, not being understood. Not being HEARD!
When I say I’m struggling to remember something and someone replies, “Oh, that happens to all of us,” I immediately roll my eyes and retreat.
My forgetfulness isn’t just “senior moments or menopausal” My forgetfulness, confusion, and more are neurological…it’s my faulty brain that affects how I function every single day.
Sometimes I wonder if I’m overreacting? Am I imagining how people treat me now, am I becoming paranoid. Is dementia taking over and making me suspicious of every single person I speak with. Sometimes I feel the whole world is against me!
I feel my world is shrinking!
Living with a condition that others can’t see, chips away at my confidence and sense of self, I’m slowly disappearing.
I now feel I’m existing in two worlds, the one inside my head, where my sidekick takes over producing something I know is different.
Then there is my other world where I use up all my energy to appear “normal” what ever normal is!
Social situations can be especially tough. I worry about losing my train of thought mid-story or forgetting someone’s name. All that anxiety can make me retreat. Do I really want to connect?
That will just mean if I connect with others it will require more effort.
Yes, isolation is slowly sneaking in. Friends have now stopped checking in with me, phone calls are very few and far between, I’m slowly becoming a recluse in my own home…I feel trapped with dementia.
My only contact with people is now online or a quick hello to a passing person whilst walking our dogs
Every day is different. Some days are frustrating, others are full of small victories, remembering the time of a zoom meeting, finishing a story without losing track, finding a moment that’s clear with no disruption from my sidekick.
Yes i know I have dementia, but I still deserve to be heard, and listened too. I’m still a human being…I am still Gail, who just needs a little understanding and patience.
I hate that I’m treated differently, I hate that I’m becoming invisible…I HATE DEMENTIA!
I can’t control how others perceive me. But I can choose to live honestly in my little bubble.
It is becoming increasingly difficult to hide behind my smiling mask of “I’m Fine”
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14th November, our last break of this year.
We are back in Cumbria!
Cumbria is becoming quite a favourite of ours. We have stayed at quite a few different parts of Cumbria and the Lake District.
Every time we visit this beautiful scenic, tranquil place we always come across something different, another little nugget of gold.
This time we are staying Just down the road from Greystoke
Greystoke, is a small village with ancient market cross dating back to the early 1600s. A mixture is of old stone cottages and modern houses, with a quaint little shop / post office, a small village Church and the village pub. Also we hadn’t realised that there was a stunning castle, which fortunately we was made aware of by the shop keeper.
As we walked through the arched entrance down a very long driveway. The auburn coloured damp leaves that pave our pathway. Tall pine trees that line the road side alongside over hanging tree branches which hide the castle from view.
It wasn’t until the driveway started to opens up to green lush fields, that the castle came into a distant view. The sound of pheasants who was making a loud, sharp, kok-kok or cack-cack-cack sound, took off like a little Olympic runner across the open countryside.
It was the castle coming into view that really captured our attention …Wow!
We wasn’t expecting that view, “what a stunning castle hidden away in the beautiful countryside”
What a gem
There were gardens and woodland walks surrounding the area…I bet in summer the gardens are beautiful.
We pass ponds, waterfalls and venture through woodlands.
Underfoot was very soggy in places, must have been from the days of torrential rain, but it didn’t distract from the beauty of this wonderful castle and its surrounding grounds, we were so great full to the shopkeeper for pointing us in the right direction, we had a fantastic afternoon.
Sunday we decided a local early morning walk to the nearby forests, unfortunately all the carpark and gateways were closed to the forest which will become apparent.
It was a stunning morning as the sunlight made an appearance, making the morning feel quite magical. The soft sunlight with golden sunbeams that illuminated between the trees was stunning. The beams of light picked up tiny specks of dust, turning the morning into something quite enchanting.
The early sunlight didn’t just illuminate the gateway to the forest, quietly it was waking nature, all the birds coming to life entertaining us not only with their birdsong but their acrobatics across and through the tree branches.
As the sun rises the world is awake and the calmness starts to subside, the noise of passing traffic kills the silence, but not the view
It’s a frost morning this morning, making everything glistening, the fields are a much paler colour of green as they are covered in a soft glistening veil of white frost.
The leaves aren’t soggy and slippery underfoot this morning, they are frozen and crunchy.
I stand around watching the chaffinches flit from branch to branch, when I’m interrupted by a lovely local man with so much knowledge about nature in this area of Cumbria, I found him so interesting.
He explained why the forests were closed…”Deer are ready to have their young, so the forests are closed to visitors from October”.
The car rallies that are held in the area come to a standstill, everything stops around the forest to protect the young deer.
He talked about all the Rooks around the camp which nest high up in the pine trees. As we spoke to each other, a rook came and sat ever so close.
The man explained that some of the rooks where extremely friendly due to them being hand reared, one particular rook brought the staff at the park reception gifts. The rook would go out and find coins or shiny items, then on his return, he would place them on the window sills or nearby hand rail just outside of the reception window.
I could have spoken to this man for hours, so much knowledge, he was so interesting…Well it was about nature!
After brunch we set off to explore another area of Derwent Water, we normally go to Friars Cragg, today we are going to a different part…Calfclose Bay
We park up at a carpark and set off to walk Walla Crag, but I don’t think we got quarter of a way up when I began to struggle. My breathing is not good now when put under the strain of inclines, so it was about turn to make our decent to Calfclose Bay.
Now Toby our oldest Scotty was in his element…Water! Oh he loves water! He would play for hours if we let him.
We found Keswick far too busy today, was definitely stressing me out a little. Must remember don’t visit Keswick on a Sunday afternoon!
Time too return back to our lodge for our last evening in Cumbria
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When I checked my diary on Sunday 9th November. I was shocked to find a exceptionally busy week.
Panic set in as I wondered how on earth I was going to cope with this overwhelming schedule.
How on earth had I managed to book all these meetings in!
Obviously I wasn’t in control when I booked all these meetings into my diary!
It’s not unusual for meetings and appointments to creep up on me, it’s those unexpected meetings that just seem to jump into my diary, the ones that are rescheduled that disrupt my new routine of not overwhelming myself with lots of meetings.
A full diary can mean different things to different people. For me it brings a heavy feeling, a slight feeling of panic…How will I cope…How will my head cope!
Every entry in my diary is a promise I have made to others and also to myself. With those promises they all carry a responsibility.
The blank spaces, once inviting, just disappear. Suddenly, the diary’s pages can start to look like a checklist that never quite ends.
Then I find myself longing for those empty days, the ones that allows me to breathe and simply be me.
There’s no shame in craving emptiness, which I do crave more and more now.
Then again I should feel grateful for the active, connected life, but equally, I need to give myself permission to leave a few blank spaces because it’s in those blank spaces that I find a most important, time to reflect, create, and rest.
Monday evening my head was all jangled and that’s only the beginning of the week!
Tuesday, one of my quieter days, gave me a little breathing space before Wednesday and another full packed day with meetings
Thursday I’m flagging , what people don’t always realise is, that when you live with dementia it’s not only the meeting that can be exhausting, it’s all the preparation. The note making…The typing out…The reading through…The practising for timings.
Friday morning I’m working with Dee from Bradford University. Me and Lynne will be telling our personal stories on receiving our diagnosis to some students.
After lunch I will be able to put the busy week behind me, me and hubby are off for a weekend break in Cumbria, I must say Cumbria is becoming quite a favourite of ours!
Time to recharge my batteries and calm my jangled head.
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Menopause seems to be talked about more these days, there has been a noticeable shift in media coverage. Television documentaries are now featuring more conversations around the subject of menopause.
Early menopause interests me…I wonder if it could be a contributing factor to my cognitive decline and Alzheimer’s.
I scroll through the internet trying to find information regarding early menopause and whether there is a link.
Apparently there is some evidence that earlymenopause be it natural or due to surgical removal of the ovaries, could be associated with an increased risk of cognitive decline. Also the possibility of developing Alzheimer’s disease and other dementias later in life.
How true the information is I really don’t know.
When I looked at the hormone oestrogen, it does appear to have a protective effect on the brain and does supports neuron growth. When menopause occurs early, oestrogen levels will drop sooner, which potentially reduces the neuroprotective influence.
Some information i found, was that women who experience menopause before age 45, especially before 40, may have a higher risk of cognitive decline or dementia, compared to those whose menopause occurs later in life
Women who had removal of both ovaries before a natural menopause did seem more at risk if they didn’t receive hormone therapy after their operation. There was also some evidence that starting oestrogen therapy around the time of menopause might help preserve cognitive function.
Having said that Alzheimer’s disease is multifactorial.
Genetics, vascular health, lifestyle, and other medical conditions can also contribute to the risk.
Early menopause may be just one piece of a complex puzzle rather than a sole cause.
I would be so interested to find out more about early menopause and cognitive decline if any researchers have any further information.
Having gone through the menopause before the age of 40 menopause and cognitive decline is a subject that certainly interests me.
Too Young for Dementia? 