Diary – Sundown the Documentary

Friday 11th November 2022

Friday is normally a day off for me. Not today I’m playing catch up after being away for a couple of days.

I also have some very important existing news about Sundown the Documentary.

Crowd funding has gone live and if you would like to find more out about the film click the link below, where you can watch a short trailer and read their story, oh and mine too

When you click the link scroll down the whole page to read all about the documentary

A BFS short documentary

https://www.crowdfunder.co.uk/p/sundown

What is life like when Alzheimer’s Disease has made both your future, and your past uncertain? 

There are over 40,000 people living in the UK today with early-onset Dementia Disease, a condition which can severely affect memory, thinking skills and cognitive ability. Aside from the physical challenges this presents, it also creates an enormous emotional strain as maintaining relationships and a normal standard of life becomes a challenge. 

We want to explore this perspective. The vast array of symptoms experienced by Alzheimer’s patients can be confusing to witness. We aim to place our viewers into a mind as it loses grip on reality, to explore the confusing, scary and often inspirational results.

This is where my story comes in…

Diagnosed with early onset Alzheimers at just 54.

Instead of shrinking away into her condition and the prospect of the future she insisted on a positive path forward. Gail became and continues to be a very public ambassador for changing the perception and stereotypes associated with Alzheimers patients.

Her daily blog, filled with insights and struggles with the condition from the past three years, has inspired us with its unique perceptive, articulate descriptions and positive outlook on dementia:

Please can you help get this young film crew off the ground to produce this short documentary …they are so passionate about raising awareness of dementia

Diary – Song Lyrics

Thursday 10th November 2022

The other day there was an artist singing on tv. The track was one of a more recent track…rather a catchy one! When the singer began to sing I also began to sing and wiggle to the music.

A comment was made, as to how I can remember the words to the song. You have dementia!

No idea really, but I was definitely singing some of the words…wonder if I was in tune!

As I write this I can not for the life of me now remember the tune, the song or the artist!

All I can remember is the singer was wearing pink!

I search Google, then I remembered she performed on Strictly.

A search on YouTube.

At last I find the track

There has been evidence from scientific studies that listening to music lights up the brain in many places, reaching the parts that others can’t.

Listening to old favorites and new ones can bring back joy.

Stimulating music, something a little more lively like big band, swing, salsa, disco music can inspire dance and movement, which would provide physical exercise, entertainment, and perhaps a little excitement too.

If someone is experiencing stress / agitation, soothing soft music can help to calm the mind.

Listening to soft classical music or non-rhythmic instrumental background music may also improve mood and boost cognition, according to research.

Studies show that stimulating the brain using classical music can enhance thinking — also known as “the Mozart effect.”

So put the radio on, or your play your favourite cd.

Listen to some music and feel the effects.

Tracks you heard years ago, will jog your memory take you places and I bet you can even remember some or all the lyrics.

If I hear anything with a good beat I’ll be jigging along in no time.

Diary – Is it Lack of Support or Lack of Understanding

Wednesday 9th November 2022

When a family is faced with a dementia diagnosis, it is the whole family that is affected, not just the person with dementia.

Throughout my 3+ year journey I have come across many hurdles, hit a few brick walls, but nothing or no one can prepare you for the changes in the dynamics of your relationship with your partner, wife or husband.

You never imagine for one moment that the person you married would change into someone completely different.

I know I have changed, I can feel it inside.

One day we do get a glimpse of the old Gail the original Gail, the one whom would be the life and soul of any party.

No one prepares you!

Whom is there for support ?

Whom is there to answer questions on relationships ?

To explain the changes that we may encounter in this new chapter.

Whom is there when one or both of us needs to off load?

You might just have a small query, or just need to talk to someone.

Then again, would any of us reach out for couples help… It all comes down too, if we would want to discuss our private life by bringing a stranger into our personal space.

I’m going to be personally honest, sometimes I think I would be better off on my own, unburdening my hubby from the future that lies ahead.

I often wonder if I would cope better alone. 🤔

I wouldn’t have to constantly watch what I was doing, or cover up the mistakes I make.

I wouldn’t be a burden to hubby.

Im often left feeling guilty for Dementia coming into our lives.

There are so many changes to overcome when dementia creeps in to a relationship.

Dementia slowly steels pieces of the person, changes personalities and definitely mixes things up!

Diary – Photos bring back memories

Tuesdays 8th November 2022

I love looking back on old photos, it’s like reliving those special moments.

Memories flood back or do they?

Looking through the photos, happy endorphins are released, I can feel a smile , then a grimace as I look at my hairstyles, the fashion!

Picture of me in my Mum and Dads arms I can’t remember, but I do remember the place it was taken. Not that I remember being there at the time, its a place that I am familiar with as a small girl, it was our local park. I recognise the houses in the background.

Yet the photo of me eating the ice cream on the beach, I have no recollection where when or how old I was.

I sit looking through more and more as my life is relived, it’s just like getting in a time capsule and going back in time. Some memories a little foggy others are ever so clear.

A holiday to London! What holiday? I have no recollection of my time in London what so ever, yet my hair style and clothes I could tell you all about them!

So strange that my memory holds on to lots of chapters in my life, so many milestones, yet my memory doesn’t always release everything.

Is it because I have to many memories to fit into my memory bank? Maybe my memory bank is overloaded, so it has to expel some memories to make room for the new. Or is it that I possibly forget the ones that have no meaning. Those memories that are neither happy or sad. Who knows how our memory bank works.

I find my memory is very similar to my computer. Some things I can find easily, others I open file after file to find what I’m looking for.

Funny how the pictures have a different affect on your ….grrr can’t think of the word!

Emotions! That was the word I was looking for, it came to me the next day when I was reading through to edit.

When I look back at the photo below , they bring a whopping great smile to my face, I had something very special in my arms…my daughters.

The several hours of pain I endured and all the problems faced through pregnancy is a distant memory.

Photos are a great memory aid, helping us to reconstruct, to recall moments.

Memories fade and can become contaminated without a visual record like a photo or video to back them up.

Yet so many of us now do not have a photo albums.

Most people will take photos on their phones.

It seems gone are the days of the hard copy, the boxes of photos, the albums.

In 20, 30, 40 years from now where will our photos be?

No one knows !

So don’t forget to print off some of your photos, make an album.

You never know when you may need them.

Diary – Clocks

Monday 7th November 2022

How can one hour change the way you feel so much!

That one little hour!

Very strange happenings early Sunday morning.

It all started at around 1.45am just before the clocks went back an hour.

I woke to a funny noise, well I didn’t wake straight away…It was that funny feeling of, am I awake or am I dreaming!

Did I hear a loud noise?

A single high pitched pip was coming from somewhere, I doze back into sleep, only to be woken again to the same noise.

This happened a couple of times more, before I eventually realised I wasn’t dreaming, it was a real noise!

I get out of bed to find poor Toby huddled in a corner, the noise obviously scaring him.

I open the bedroom door, everything is silent, then all at once a high pitched peep!

The noise makes me jump…Woo I really don’t like that!

I look around and realise the noise is coming from the smoke alarm!

The only thing handy to climb upon is a chair, so up I get on the the chair hoping I can reach the cover to reveal the battery.

After fiddling about trying to get the catch undone and keeping my balance, the battery is out!

Silence is resumed!

Toby back in his basket and me back into bed, sleep resumes.

I wake early hoping for a sunrise

No sunrise this morning, only a hazy bright strip through the thick dense clouds.

What is going on with my camera? The button doesn’t feel the same, I’m struggling with viewing, focus, buttons, the whole camera.

Everything is blurry…For goodness sake! What am I doing wrong!

Eventually after staring at the camera, turning of and on a few times, I manage to capture some photos of my time at the Nature Reserve

The rest of my day continues in a topsy turvy, higgledy piggledy, sort of way. Not a clue on time, or even what i should be doing.

Feeling quite lost and uneasy i muddle through.

Strangely I am not hungry either, I have no temptation to eat.

Later afternoon we wander up to the beach…Is there going to be a sunset?

We turn the corner…Yes! The brightness hits us…who turned the big light on!

Wow! We wasn’t expecting such a beautiful sunset, after the cloudy showery day we have had.

Toby plays on the beach, while I get confused and annoyed with my camera…At least I manage to capture some photos.

I really don’t know what I have done, and hubby doesn’t know either

I think I need to go back 1 hour, maybe everything will feel normal again!

Diary – Dementia Connections

Friday 4th November 2022

Just a quick blog today

A few weeks ago, I may have mentioned that I had a few projects ongoing.

I receive an email Monday / Tuesday of this week to confirm the article I wrote in October has been published and is now live

If you would like to read the article for Dementia Connections, please click anywhere on the link below. This should take you directly to the page and other pages you may wish to read

https://nam12.safelinks.protection.outlook.com/?url=https%3A%2F%2Fdementiaconnections.org%2Fcrafting-my-own-journey%2F&data=05%7C01%7C%7Cf03129ff12d745b669a108dabb68b06c%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638028355563289906%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=KkCpq0p%2FiSL4FcYb57zlH%2FobLMnCTBKLYHfxO94NTQY%3D&reserved=0

Diary – Sundown

Thursday 3rd November 2022

Tuesday 2nd and Wednesday 3rd November I was so excited to come face to face with the producer and director of a film that will be produced called Sundown

As this is their last year at University for these two guys this film is of great importance.

Why am I involved?

The film is about early onset dementia, so Gabe and Harry have been in contact with me for some months now. Collecting information on how I live my life with my sidekick, how I stay positive and all the things I do to live as well as I can.

It’s a very interesting exiting experience to be apart of.

While also raising awareness that dementia is not all doom and gloom.

I am so excited to be apart of their film.

I really don’t know whom is more excited…Them or me!

Early days, with lots and lots of research being done.

Lots of talking, note taking and photos.

We spent a couple of hours together on Tuesday, talking about Blackpool the surrounding local area, oh and Dementia.

Up north! A very new experience for Gabe and Harry as they are from the South, think a few more jumpers might have come in useful!

We had a few laughs especially when they told us they where staying at the Norbrek Castle…I can tell you it’s no castle!

Unfortunately they both had the experience of one of the worst hotels in the area! I was so glad they could laugh about it.

Wednesday was spent talking more about my dementia, followed by a very blustery walk on the beach, a little filming and lots of photographs which will be used to advertise the film.

I will be keeping you all updated on the progress of the film over the coming months.

Hopefully filming will commence in the New Year as they do have a timescale for completion

Dementia has brought so many positives into my life!

Diary – The Windmill

Wednesday 2nd November 2022

On Sunday October 23rd me and hubby set off to visit our local Windmill.

Marsh Mill windmill was built in 1794 by Ralph Slater. He was a Fylde Millwright.

This big old mill still houses all the original working and definitely has a wow factor.

The windmill is only open to the public on odd occasions now and It just happened that I had seen something on Facebook. It was open on Sunday for a few hours.

I couldn’t remember the exact times, so we set off just on the off chance we would be lucky with our timing.

As luck had it there was a guided tour just starting, quickly my purse is out to pay our fee, camera around my neck and off we go!

A lovely man explaining all there was to know about the windmill and the surrounding area.

Marsh Mill was a working windmill. It was a gristmill, one which grinds grain to flour. It produced wheat flour for bread, crushed barley for animal feed, rye flour and oatmeal.

This was a working mill until 1922.

A floor by floor tour, from the basement where the kiln would be right to the very top.

I didn’t realise how many floors they would be.

On another level they would dry out the grain

I was finding the whole experience so interesting

The climb was not so exciting!

That was an experience in itself.

The steps where so steep! It wasn’t the going up that was bothering me it was the coming down…Steps and my dementia are not a good combination.

Me and hubby do have a great system in place for steps, hubby goes first. I then place my hands on his shoulders and we go slowly slowly down each step. Works well, because I can’t see all the steps, I don’t go dizzy and feel like I’m going to fall down a steep slope.

After the 2nd set of the old wooden steps I was struggling a little to say the least. In my head I’m telling myself “ come on Gail you can do this!”

I did eventually make it to the top of this wonderful big old Windmill, which stands 70ft tall

The coming back down was very interesting.

The steps where so steep, it was advised that we turn around and come down backwards! In a way that was easier.

I took my time, hubby guiding me through the decent of every single step. I did not dare to turn around!

I found it so amazing that the old wooden floor was still intact, taking the weight of all the big metal cogs and the large round stones that was used for grinding.

The noise from the movement of the belts and cogs was quite therapeutic, synchronised and repetitive as the big old cogs turned the sails.

The floor did move quite a lot with every turn, making me wonder if the floor was safe!

It was a weird feeling when you looked through the window watching the big red sail pass by, with the floor vibrating under your feet.

I can’t remember how long the actual tour was, or everything that was said.

The main thing was, I was glad I took the tour because I enjoy every single minute!

Diary – Half Term

Tuesday 1st November 2022

School holidays…time to have fun!

As all of our Grandchildren are now in school or nursery, when school holidays come around it’s always nice to see them if they are not off on holiday.

Monday 24th October my daughter and her friend made a surprise visit, childless as my 2 oldest grandsons where spending time with their Dad doing Dad things.

Me, my daughter and her friend spent a good few hours chatting or should I say my daughter did! She is a chatty one!

Then again we don’t see each other every day, so when we do get together, there’s always lots to talk about.

After a good few hours I’m all talked out, it was time for my daughter to leave.

Hugs all round before they head off for home.

Tuesday my other daughter had arranged to meet me and hubby in the park at 10am with grandchildren in tow.

It was a beautiful day, I don’t think any of us was expecting it to be so warm.

We all walked through the park chatting and playing with the two boys.

It had rained quite heavily throughout the night, so there was lots of muddy puddles around…just great for splashing in

The boys where in their element, park, mud and chocolate from grandma

Adam the oldest of the two, was very brave and climbed high up on the ropes, with a little assistance from grandad.

While Zach loved the leaves and the trees

Grandad had lots of fun too

We had a very fun packed morning and was certainly ready for some lunch to top up our energy levels.

After lunch we had a short play on the beach

Where Toby could join in with the fun.

One boy and one dog having so much fun together 💙

Time always goes so quickly when having fun.

The boys where exhausted, and so was I.

It was time for them to head off home until next time.

Happy memories of the day captured on camera and the imprints of sticky fingers left behind 💙💙

Diary – Organise or Help

Monday 31st October 2022

When all our children ( now adults ) lived at home, organisation was definitely the key to everything working well in our home.

Looking back I have no idea how I did everything, running a house, a business, fostering, picking grandchildren up from school, nursery, shopping, cooking, visiting parents 3 times a week.

How on earth did I find the time or the energy to fit everything in to my day?

Now I struggle to organise myself never mind anything else!

When I received my diagnosis just over 3 years ago, I would regularly receive comments like :-

“ I don’t know how you do all the things you do”

“ where do you find the energy “

I thought perhaps my dementia was going to be different in some way.

Little did I realise that 3+ years later I would become so much slower. Today I have only done the food shop, which led to overloading my head, resulting in me making a complete mess of my online banking.

I now have to write down all my jobs on my things to do list, as they would never get done, distracted by other things, and even when I do write them down they don’t always get completed.

The main thing is I do still try!

I would be lying if I said that it didn’t upset me every now and again.

It does definitely upset me sometimes.

There is not only me to think about there is hubby too.

I have always run our home even when working full time.

Now my sidekick Alzheimer’s moved in there are quite a few disruptions occurring.

I have to accept that my life has changed.

That is tough!

Organising my sidekick is much harder than organising my hubby!

Or is it ?

I think they are both on a par with each other!

No, really! I have to accept that I am slowing down, as well as getting easily distracted with things that are not on my to do list!

Does it matter…Not really, but if I’m honest it does affect the way I feel some days.

I think lots of us put ourselves under too much pressure to complete tasks.

We should be kinder to ourselves.

Sometimes asking for help that can be the hardest part.

Do we see asking for help a weakness?

Or even a fear?

Why, are we so fearful?

Maybe it comes from a negative experience of asking for help early on in life.

Or maybe it was one of those times you were shamed at school for asking for help.

When you think about it, we always see rewards for the people that completed something alone.

Would anyone be rewarded if they had asked for help or assistance?

It’s just one of those things that needs to be changed.

There is no shame in asking for help, but yet for me and possibly many others asking for help is oh so difficult.