Friday 21st April 2023

Last week my daughter and grandson called.

The weather was awful, wind, rain and it was so cold!

When we arranged our little get together, I was hoping for a nice day…Possibly a beach day! Adam loves the beach and it’s always a treat to watch him playing and having fun.

My visitors arrived around 10.30am and Adam being Adam knew his mum had packed his lunch in a lunch bag. As soon as he stepped foot in the house he was immediately hungry! Clutching his little bag of goodies, which he was trying ever so hard to open.

He sits at the table with his spread off food in front of him, chitter chattering pointing at the many photos which pop up on our Portal.

Enthusiastically he names all the people and asks questions. When told the answers he remembers and repeated exactly what we have just said a thousand times! A little like myself I believe!

He always brings a smile to my face with his sunny disposition. I always used to sing “ You are my Sunshine” when he was smaller and if I sing it to him now, I always get a smile.

After lunch, the weather is starting to clear, so we grab our coats and head off to the beach.

With the new sea defence work underway the big diggers where of interest to Adam, only for a short while though, pebbles and puddles are so much more fun!

We laugh, we cheer, we clap as Adam finds stones to make big splashes.

This is what I enjoy the most about life, the little things!

The things that bring so much joy and happiness

A very simple hour playing on the beach with pebbles, even a cold windy day brought fun and laughter.

The hood that had room for two, with a mind of its own brought lots of laughter… I laughed till my sides hurt!

Even Toby had fun too

Oh how it feels good to laugh!

But this is where my laughter ended.

A couple of hours later, I had received another letter from the neurologist. This will be 3 letters in the last few weeks.

What is this neurologist trying to do?

Its getting scary now!

Anxiety at its highest!

Hospitals are my worst nightmare. I hate them with a passion, I think I have a bit of a phobia with hospitals and medication.

As I read the words of the letter, I’m upset, they are not a true account of our meeting.

The first words “ I had the pleasure”

I did not find the consultation pleasurable. I found it to be traumatic!

The words “ she came alone” !

I am quite capable of finding my own way to places, especially when I have been to before. The hospital is right opposite Stanley Park, a place I frequent often. I know this journey well.

My speech problems are noted as only when anxious, how does the neurologist know this? He has only seen me once for a very short period of time!

He continues in the letter with some of my symptoms and describes how I descend stairs backwards? I would have not said this! Simply because it is untrue.

Yes, I do struggle with stairs and I have done for quite a while, but I certainly don’t come down backwards! I think that could possible be unsafe!

So the outcome is :-

Referral back to the memory clinic for cognitive test to be done again.

More scans.

Is it really necessary to put me or anyone through the trauma of testing again!

I am finding this chapter of my dementia journey difficult to deal with, I have decided to step away from blogging, podcasting and social media.

I feel like I have been targeted for trying to live well and show others, that dementia doesn’t have to mean the end.

For me it is an ending to publicising my journey with my sidekick.

This will be my last blog, so I will take the opportunity to thank all those that have supported me on my journey. Thank You 🙏

My Podcast will be ending too

I will still post photos.

I’m not going to stop something I love and find so therapeutically calming.

I definitely need time to heal

Life is too short!

Take care everyone

Thank you so much for your support

Thursday 20th April 2023

It was Good Friday, my daughter Samantha and her two boys Harry and Edward would be joining us for the day.

Firstly I had to have my early morning walk.

6am and I’m out the door in the direction of the nature reserve. The beautiful bright full mood still visible, the purple coloured sky an excellent backdrop for showing off the moon’s true beauty.

As I entered the reserve, the sky was changing, the wispy clouds started to mask the moon, as it slowly disappeared.

Now another true beauty would appear, this time bringing warmer colours to light up the sky

I wait patiently in the cold morning air, as I watch the wonderful ball of fire, appear from the hills, to illuminate our world.

With it bringing colour and warmth, it’s like being wrapped in a warm snuggly blanket.

As the sun rises a new day begins bringing life from out of the trees.

Birds begin to appear, serenading me with their beautiful song.

Heading off toward the pond to feed my feathered friends, Woops…Time flies when I’m out walking and I can’t hang around, my visitors will be arriving!

Family arrives around 10.30, hugs all round.

We decide to see what’s going on at Anchorshome park, as it has been advertised on Facebook that there is a fairground…Boys excited, until we get there and they see all the rides are closed!

Looks like it McDonalds! That brings a smile to their faces!

After lunch time for some fun on the beach.

Lots of pebble towers built

Lots of splashing and skimming of pebbles, with a few photos…of course!

We head off down the beach for the next treat of the day Ice cream

What a glorious day for making memories

Wednesday 19th April 2023

You would not believe some of the things I do now.

I don’t believe it either!

Living with dementia can be a challenge, some days a real challenge!

Leaving me at my whits end.

We all have bad days, but a bad day with dementia, can be a confusing, emotional rollercoaster of a day, which always leaves me exhausted.

Then there are distraction days, where I start something, get distracted and completely forget what I should be doing.

Nothing actually gets done on a distraction day…I’m too distracted!

Then there are days where I walk and have no concept of time, could be out for hours and not realise.

There are the days where my energy level hits rock bottom due to lack of sleep

Then there are the funny days, the days where I do really stupid things.

I do and say the most silliest of things. I found the dishcloth in the fridge…Don’t ask haven’t got a clue!

My words get muddled and I say the wrong words. The word I’m thinking always sounds right in my head, well I think it does! Then it comes out my mouth…Result giggle or sometimes not!

Take the other day I lost my phone.

I had no recollection until I got home and noticed I couldn’t find my phone. I knew my phone was missing as I tried to call it from my watch.

My watch told me “phone out of range”

It was a Wednesday morning around 7.30am when I set off to the supermarket.

I don’t mind early morning shopping as it’s quiet, no hustle and bustle of noisy crowded isles.

I enter the supermarket list in hand, only a short list today, so shouldn’t have a problem.

All shopping added to trolly, I make my way to the only checkout that is open.

I checkout, pack my bags and head off home.

Not been at home long when I need my phone.

Where is my phone?…I can feel the panic building as I look in my bag, pockets, car, every room in the house! Ahhhhhh!

I remember I have a tracker on my phone so I open the app on my iPad

Tracker says, my phone is at the supermarket.

I Google the supermarkets telephone number but get in a right old flap trying to dial the number on the house phone.

I never use the house phone, all my contacts are programmed into my mobile.

Jus to complicate matters is an old dial type phone.

I think of ringing hubby then realise his number is in my phone!

Now I decide to return back to the supermarket.

At the supermarket I try to explain to the supervisor I have lost my phone on an earlier visit. “My phone tracker says my phone is in the supermarket somewhere” I possibly may have dropped it.

“Has anyone handed a phone in?”

No was the answer.

The supervisor asked for my number so she could ring my phone.

I didn’t have a clue what my phone number was.

She then suggested tracing my steps, well I can try but probably won’t be very successful, now explaining I have Alzheimer’s.

I wander the supermarket in hope of finding my phone.

I return back to the supervisor disappointed as I didn’t come across my phone

The supervisor suggests calling in later.

I leave very Disappointed with myself.

I return home to try and find hubby’s phone number.

Emptying drawers looking through diaries, pads, papers anything that may have any phone numbers.

At last found it!

I ring his number off the landline, which muddled with my brain using a dial and not a keypad.

Hubby answers, that’s when I go into babbling mode! Trying to explain how I have lost my phone.

“I know it’s still in the supermarket my watch and iPad says so!”

Hubby to the rescue!

After having to come out of work to sort me out, the phone is found in the most of unlikely places

A box of sausages…Yes a box of sausages!

I was so confused!

I do not buy my sausage from the supermarket, so how it got there I have no idea

Your guess is as good as mine!

Woo we did laugh!

Tuesday 18th April 2023

Quite a while ago, I was asked if I would produce a piece of art work, of course I jumped at the chance. It was a reason to get my creative juices flowing and give me a purpose.

The art work had to include “A Bridge To You“ and preferably created by the use of quilling

Im always a little nervous when creating something for someone else, because we all like and see different things in a piece of art.

We all interpret differently

I sat messing about with ideas, screwing up pieces of paper and throwing them in the bin.

I sat for hours quilling and shaping tiny strips of paper.

Ideas would pop into my head, then they wouldn’t work. When quilling you cant just erase like you can from a sketch. Once you fix the quill in to place, it is staying there!

The finish piece of art was carefully wrapped up and sent off.

Now I am nervous…

1. Would my artwork survive the postal system and reach the recipient in one piece

2. Would my artwork be liked

My art work arrived safely.

On the 31st March my art work was used in a community workshop in Wales by the IDEAL programme.

IDEAL is the largest study of living well with dementia in Great Britain. The evidence will enable the development of new policy, interventions and initiatives to transform the lives of people with dementia and their carers.

I found this comment online…

“It’s amazing how a community workshop can bring so much connection. People sharing their lived experiences as well as the general public wanting to know how they can help. Care research disseminated creatively can be so powerful”

You can find out more about the IDEAL Programme by clicking the link below

https://www.idealproject.org.uk/

Now I’m feeling kinda proud of myself…A nice little boost for my system!

Monday 17th April 2023

On Thursday 6th April it was my first face to face visit to see my psychologist.

I had planned my morning without too many distractions.

Distractions are my downfall and I really didn’t want to be late.

I set off around 10.30am giving myself plenty of time, just in case the traffic was busy.

I have a rough idea where I am going and surprisingly I find the building without any problems.

I’m a little nervous on arrival, I have no idea what to expect.

I press the buzzer and a smiley face meets me at the door, then points me to a waiting area.

The area is bright and clean. I notice some artwork hanging from the wall. Notice boards with brightly coloured leaflets and advertisements

Im looking all around me trying to take in as much as I possibly can. I look out of the glass doors I can see brightly coloured children painted on the wall, this is the wall that surrounds the local children’s hospice.

As I sit fixated on the bright colours, my name is called. I turn, there stands a slender well dressed man. His face welcoming and friendly which eases my anxiety.

We enter an empty room, there I take a seat so I can see the door as I do like to be able to see the exit.

This room has a softer glow rather than the bright white light from the usual fluorescents, which makes the room feel warmer and more relaxed.

Introductions, which then turn to how I’m feeling.

“Today I feel ok”. well I thought I was, until I speak about dementia.

My emotions open.

“Dementia is Shite!”

I explain that the only thing that makes me feel normal, is nature

Being outdoors listening to nature, sitting with the ducks, taking photos, focusing on the calming sound of birdsong, makes me forget that I have dementia.

When I’m outside with Nature it’s just me! Dementia doesn’t exist.

I feel so calm.

Then once back home I have the constant reminder of what I have forgotten to do, the many distractions, dementia is back in the room.

The many struggles which I once would have coped and laughed off, now becoming more difficult.

We touched on the neurologist, which still resonates and most probably will for sometime.

I can’t remember everything we discussed.

I wasn’t uncomfortable, even though I had tears rolling down my face and a snotty screwed up tissue in my hand.

In a way it was a relief

Have I really accepted my diagnosis of dementia or was I secretly bottling everything up!

No doubt I will find out in the weeks to come.

Thursday April 13th 2023

Dementia and the neurologist really knocked me for six.

My interest, my focus, my confidence has been seriously shattered.

I can’t be bothered with others, at this moment in time I’m preferring my own company.

The only thing that has remained the same are my walks with Toby and Hubby…I still need to receive my nature hug!

Nature is a wonderful, it is the one thing that has kept me going.

The other week I was contacted to join a team of researchers, i tried to put off…Ignore, but every time I scrolled through my emails, the research email jumped right out at me!

I debated for quite sometime, then plucked up the courage and replied to the email, requesting more information.

Last week the research came to light, when I had a zoom call with one of the researchers

The research will be conducted around…The delivery of a dementia diagnosis.

The aim of the research is to create communication and training guidance for clinicians who deliver these diagnoses

At the moment there is no current training given on how a dementia diagnosis should be given.

This research could be so beneficial.

The diagnosis process differs from person to person, sometimes people leave not sure about what they have been told and don’t even realise if they have actually been given a diagnosis or not!

I felt pressure to take medication, I knew absolutely nothing about medication for Alzheimer’s, so passing me a typed out piece of paper with the name of the medication, is not going to help!

There are so many areas that need improving throughout the diagnosis and aftercare of dementia, that I couldn’t say no.

There is no-one is better than people living with dementia to assist how a diagnosis should be delivered.

Am I really up for this?

The answer is…I don’t know.

What with struggling with dementia and the trauma of the neurologist do I want to be involved?

Well I won’t know if I don’t try!

I’m always saying to others…You don’t know, unless you try!

So here I am wondering if I have made the right choice, joining a research team to assist in trying to get the receiving of a dementia diagnosis changed for the better.

It’s got to be the right choice…Right!

Its a No Brainer!

Wednesday March 12th 2023

Home from our second adventure of the year, time to plan number 3.

Where shall we go?

There are so many places to choose, we have a few in mind, Berwick upon Tweed, Edinburgh, Kielder Forest, Anglesey our list is endless.

So many places in England, Scotland, and Wales that we have never visited, this is an ever growing list as we scan the map.

I would like to return back to Brampton Cliffs in hope to see puffins, also to carry on exploring the Yorkshire coast line.

After a few evenings of backwards and forwards between Anglesey and Brampton Cliffs.

Brampton wins!

Now for the decision on where to stay.

Another few evenings of searching the internet for dog friendly accommodation.

At last accommodation booked

So excited…We are going back to Brampton Cliffs, hopefully to see the puffins!

Accommodation on our next venture is a lodge a little nearer to Bridlington so we might just be able to visit a few new places.

Better get my batteries charged, gonna be doing a lot of walking again!

Tuesday 11th April 2023

When life gets us down we tend to loose focus on the wonderful journey life can bring

Everyones life is filled with ups and downs, twists and turns, joys and sorrows.

Life is a roller coaster of emotions and experiences that can bring us pure elation one moment and deep despair the next.

We need to remember life is a very precious gift that should not to be taken for granted and should be fully embraced every single day.

Life is a beautiful and magical thing, full of possibility and potential, just think of the possibilities we have.

We all have the potential to grow and explore the world around as we learn more and more about ourselves every single day.

There are always new opportunities to experience and new lessons to learn.

Life is an adventure that should be savored and appreciated, so let us all make the most of every precious moment.

Live every day as if it’s your last

Monday 10th April 2023

Bed for 10pm, my normal routine.

I wake at 1.01am, then again at 2.44am, then stir again at 5.42am. I lie cocooned in the warm cozy duvet. Tired and not wanting to move.

At 6.10am I push myself out of bed, I can hear Toby tip tapping out side my bedroom door as he paces up and down on the wooden flooring.

I can hear the howling wind circling around the house, definitely not inspiring me to move!

Toby always pleased to see me as I open the bedroom door, his whole body wags, not just his tail!

I do get a smile sometimes as he lifts up his jowls to show me his teeth…He is so full of character, love him so much❤️

6.15am Hubby’s alarm goes off, woo how I hate the tinny sound of the phone alarm, I hate any sound that comes from the phone!

I sort Toby’s breakfast out, hubby sorting his own breakfast before he leaves for work. For me I return back to bed, giving me time to wake up and drink my flask of sweet tea, check social media and write up a bit of my blog from yesterday’s notes.

I check my diary, nothing on today, a free day to do what ever I want.

I’m a little later to move this morning as my motivation has been on the low side lately.

I park up at the nature reserve, quiet this morning!

Think the grey clouds are keeping people away.

I stand scanning the grassland, as a couple of ducks emerge from the long grass.

I throw them a hand full of food and walk on by.

I head towards the pond, wow so quiet, just a solitary swan waddling out of the water to join me.

I decide as it’s so quiet, I will walk further into the reserve. I’m on lookout for anything and everything.

This little Reed Bunting caught my attention with his tuneful song

A little skylark drops from the sky into the scrub land searching for breakfast. I feel so lucky to have been so close, usually they fly off when I sneakily try to move closer.

I walk along the winding pathway towards the bushes and trees, I’m hoping to spot something new.

The pathway is long and leads to the gateway of Fleetwood docks

Some boats are unseaworthy, others are out sailing.

When the tide is out it always brings birds looking for food in the mudbanks.

There are lots of redshanks today.

The odd shelduck, looking lost as his partner flies off into the sky

Time for me to leave, back down the winding pathway.

A little Greenfinch caught my eye…Not seen one of those for a while!

Me and Toby both slowing down as our walk is now coming to the end. We pass through the Archway that leads to the duck pond

On to the bridge where we always feed the ducks.

I notice something moving in the reeds, it’s the Great Crested Grebes, they are nesting.

Mum on her nest and Dad guarding closely…How exciting! In a few weeks hopefully there will be baby grebettes!

With a smile on my face I head back to the car…Walk completed.

Back home, I upload my photos from my camera onto my iPad.

With cup of tea in hand I begin my routine of scrolling through the many photos taken on my morning walk.

Always lots of photos to be deleted, good job I don’t have to buy films for my camera like we used too! It would cost me an absolute fortune!

I have over 42,000 photos and 327 videos!

Now it’s time to get my jobs done, I start in the kitchen, then get distracted and end up going through my wardrobe looking for something.

Which then leads to me finding my summer dresses and much lighter weight clothes.

Then I’m back in the kitchen wondering why I haven’t tidied all the things on top of the work surface.

Here we go dementia playing games!

DISTRACTION!

Takes me till just after lunch to get the kitchen back to some form of normality and my lighter weight clothes put to one side to be sorted out.

I’m shattered, but then notice my bird feeders are very empty, another job for me to do…Can’t have my little feathered friends going hungry!

Once all the bird feeders are replenished it time to gather all the ingredients to prep our evening meal.

Before I know it Hubby is home from work, coffee and cake time!

The different stages of prepping and cooking a meal is getting more confusing, so hubby has started to assist with the cooking.

5pm our meal is nearly ready, Hubby helps me with the plating up.

After uploading my daily photos on to social media, my day is coming to an end.

6pm I retire to my bed to relax in the peace and quiet, there I always write up my blog for an hour.

7pm shower time, pj time, watching a little tv time.

9.30 – 10.00pm Bed time, lights out hoping for sleep time. Zzzzzzzzz

Pretty good day with my sidekick today.

Thursday 6th April 2023

When life gets tough we all need a little bit of support from time to time

Wether from family, friends, or an organisation. Support can come in many forms. It can be a hug, a shoulder to cry on or a listening ear. Regardless of what the support may be, it always helps to have someone to turn to when things start to weigh us down.

The positive aspects of support are numerous.

It can give strength to get through tough times and to face our fears.

It can give us a sense of validation, helps us to remember that we are not alone.

Sometimes our friends and family can give us the reassurance we need when we lose hope in ourselves.

When dealing with difficult situations a little support can help immensely.

When life throws a curveball, seeking advice and guidance from those who have been in the same shoes can be comforting to know.

It just nice to know you are not alone.

Support should be available to everyone, but I know only too well how hard it is to ask for support. It took a lot for me to actually ask for help. I am so glad I did!

No matter what situation we find ourselves in, it is important to remember that we are not alone, even though it can feel that way.

Whether it is a friend, a family member, or a trusted organization, there is always someone there to provide us with the support we need.

Reaching out to others and leaning on them when times get tough can be a powerful reminder that you can get through anything with a little bit of help.