It was 2022 when Gabe and Harry first made contact with me, they expressed their interest in making a short documentary on how I was living my life with my sidekick Alzheimer’s
We had many zoom calls before eventually meeting face to face on Thursday 3rd November 2022
The film crew never been “up North“ definitely had their eyes open, when booked to stay in one of the worst hotels!
They thought they were staying in a Castle!
Well it did have Castle in the name!
We had a lot of laughs throughout the filming and a few tears too.
We had many discussions. Always expressing that the documentary should have a positive attitude towards dementia.
The actual filming began in February 2023 and took 4 days, major disruption as the crew took over our house.
What a wonderful experience it was though, each and every crew member was amazing, so respectful of our home and of my sidekick.
Me and hubby was very sad when they left, it was an incredible experience and we felt so privileged to be apart of their work.
We attended the premiere showing in July 2023 which was an a great honour.
The documentary was taken to quite a few film festivals, reaching the finals and winning awards
So proud of all the Sundown crew.
Now I’m so excited to announce…
It’s now time to release the documentary for public viewing.
So grab yourself a cuppa and put your feet up for 15-20 minutes
I’m a little behind with my blogs as other subjects take over, so this blog is from a couple of weeks ago
By Sunday 28th April 2024 I was exhausted!
You have no idea how much dementia can sap your energy levels, unless you are actually living with dementia.
Dementia can be very complex and also very challenging.
Dementia not only impacts on cognitive functions, but also has an effect on my physical and emotional well-being.
One of the symptoms of dementia can be how it saps energy levels, making simple tasks feel overwhelming and draining
Cognitive strain can require lots of mental effort to navigate daily tasks, which leads to fatigue, I feel drained and exhausted, even after some minor activities. The constant need to concentrate and adapt to changing situations can be overwhelming and contribute to my energy levels depleting.
I don’t think my sleep disturbances help, as this leads to increased fatigue and daytime drowsiness by mid afternoon. Im sure my lack of sleep will hinder my cognitive decline and my overall well-being.
Hey Ho! It then becomes a vicious cycle of fatigue and cognitive impairment.
People forget that the simple activities such as getting dressed, eating, or walking require more effort and energy, which will also contribute to feelings of fatigue.
Living with dementia can also be emotionally taxing, leading me to feel frustration and anxiety. Coping with the changes and losses drain me emotionally, which obviously must contribute to my lack of energy.
So when I was trying to make sure hubby had a nice 60th Birthday, my sidekick did cause a few issues with energy and cognitive function.
When I searched the house to find where I had hidden his presents and card, i was surprised to discover I had only purchased 4 cards! Oh well, lucky hubby!
Another thing was trying to bake a cake without him knowing.
Also mentally preparing for visitors
The most challenging for me is navigating the challenges of a change in routine and noise levels.
It was no wonder that after 4 days of routine changes I was exhausted.
Living with dementia present many challenges for both me and my hubby. An effective way to navigate these challenges is by maintaining a routine.
A routine that provides structure to any day. Routine offers familiarity, and comfort, which all can help reduce anxiety, and ease any behavioural issues.
One of the benefits of a routine is knowing what to expect at certain times of the day, if there is no routine in my day, it will feel quite chaotic and confusing.
For example, I have set times for walks, meals and activities, which help regulate my day, providing a sense of continuity. I recognise specific activities, tv programmes to certain times of the day or week. Change will just make me a confused agitated mess!
From my hubby’s point of view, I think there is still much to learn, as we both navigate this dementia chapter together. The understanding of how my behaviour changes when my routine changes, is still very unpredictable and possibly hard to read.
So when I shout
When I don’t know what I’m doing,
When I won’t sit down and relax,
When I remove myself and just disappear from a situation.
Take a step back, think, there will be a cause!
That change or cause is making me change from calm Gail, into my frustrated agitated sidekick.
Work out whats changed. Is it something new? Is it a sound? Is it a person? Is it some thing that you said that evokes a bad memory?
There will be a reason, you just need to think about what has just happened. Rewind and think.
Establishing a routine can be so important, it can make daily life much more manageable and predictable.
Dont assume that by doing something on the spur of the moment, I will just fit in…It definitely doesn’t work like that with dementia.
Sticking to a routine will make things run a lot smoother .
Information is great, with the odd reminders along the way. You could even pop things on my notice board…Don’t get to carried away though!
Too much information could overwhelm and overload.
Flexibility, as dementia progresses as abilities and interests may change, which possibly will require some adjustments to routines
Keeping to a routine is so important.
Now I’m living with dementia, I now find it hard to be comfortable in your world of constant noise, chaos and change, so being patient and allowing me to have my quiet space is essential.
WORKING WITH someone with dementia, has got to be easier than trying to make a change and working against them.
Dementia can change in an instant!
For me, I’m not just Gail, we now have my sidekick Alzheimer’s on board!
Do people living with dementia actually have a voice?
Maybe not according to the Alzheimer’s Society!
Last week I received an email regarding the outcome of the petition Maxine Linnell started “ Stop negative and inaccurate dementia publicity. Show the hopeful, creative possibilities”
When I last saw the petition the signatures raised, was somewhere around 1660. Obviously there was a very high percentage of people that opposed this horrendous advertisement. Me included.
For me the advertisement brought feelings of anger, great disappointment and sadness, but most of all the feeling of being ignored!
Yet again the voices of people living with dementia just being brushed aside, it’s as if our comments and feelings are quashed!
The advertisement has deeply affected me in more ways than one. I can not believe such a large organisation whom claim to support people living with dementia could stoop so low, to make dementia so frightening and horrifying. Portraying that dementia is such a negative place to be in!
As for the petition.
The Alzheimer’s Society turned away every single signature! They have turned their back on the thousands of people that are trying to change the stigma and perception of Dementia
PETITION DECLINED! by the Alzheimer’s Society
You can read the update on the petition by clicking the link below
So many people living with and without dementia, campaign tirelessly everyday to create a better world for those of us living with the disease, yet the Alzheimer’s Society have turned their backs on the people that matter…
The people that need positive support!
The people that are living with dementia!
Dementia is not all about carers!
It is about supporting the person living with the disease!
According to the Alzheimer’s Society, I died the day I received my diagnosis and continue to die again, again and again!
Maybe that’s why I have never received any support from them!
Excuse me! Alzheimer’s Society! I live with dementia and I am very much alive!
So saying people with dementia die again and again and again, is definitely false advertising!
What worries me is if the biggest Alzheimer’s Charity speaks so negatively about Dementia, what hope have we got to change people’s perspectives of this disease
It’s no wonder we are still banging heads!
I sometimes wonder if there is any point!
Then I realise…Yes there is a point!
We need to stand up to negative organisation, otherwise they have won!
Changes need to be made!!
There is a life after a dementia diagnosis, I’m living proof and so are many others!
Dementia Action Week is an important annual event that raises awareness about dementia and encourages individuals, communities, and organizations to take action, to support those living with this condition.
This week-long campaign, aims to challenge the stigma associated with dementia, to promote a better understanding and highlight the importance of creating dementia-friendly environments.
I do believe that promoting a better understanding of dementia should be highlighted every single day!
Not Just For A Week!
I understand the key objectives of Dementia Action Week is to increase public awareness and understanding of dementia, but a week just isn’t sufficient in my eyes.
There are still so many misconceptions and stereotypes surrounding dementia, but we need to provide ACCURATE information and personal stories, not like some organisations that promote…People with dementia die again and again and again!
We need to raise awareness of the importance of early diagnosis, and also to support those whom have received a diagnosis no matter of age, ethnicity, or gender
We need to educate the public about the impact of dementia on individuals and their families, also that’s Dementia Diagnosis it is Not the end!
Many people live good lives, I being one of those people.
We need to promote inclusion and create a more dementia-friendly communities
Support for dementia should be easily accessible everywhere.
It should Not be a post code lottery!
By providing practical tips and resources for how communities can become more supportive and accommodating.
From businesses and healthcare providers to schools and local governments, Dementia Action Week could and should, encourages everyone to take better steps to make their environments more dementia-friendly.
We shouldn’t just be talking about making changes…We should be taking action! I hear the same conversations year after year.
Yes, Dementia Action Week serves as a powerful platform for raising awareness, promoting understanding, but don’t just shove everything back under the carpet after a week!
By coming together in a positive way, as a community we could take action and we could make a meaningful difference for all those living and caring for those with dementia
So come on people, Dementia is not just for a week…Lets work together towards a more positive inclusive dementia-friendly world!
Spring is a season of renewal, signaling the end of the cold winter months and the arrival of warmer weather. It is a time when nature awakens from its slumber. The vibrant colours of the flowers, and lots of new life begins
Sight: The landscape undergoes a dramatic change as trees bud and flowers bloom within a rainbow of colours. The once bare branches are now filled with delicate cherry blossoms. Bright daffodils, and fragrant lilacs, cover the ground and lush greenery of new leaves dance on tree branches.
Sound: The air is filled with the melody of chirping of birds returning from their winter migrations. Their songs create a symphony of nature. The gentle rustling of leaves in the breeze. The sound of rain that April showers brings, adding a soothing rhythm to my walk, also encouraging new growth from the soil.
Smell: fragrances are a sensory delight, or a hindrance for those with hay fever. The sweet scent of blooming flowers fills the air. The fresh aroma of newly mown grass, and the earthy smell of rain-soaked soil.
Taste: Spring brings fresh produce, from crisp green peas to juicy berries and fragrant herbs. The flavors of spring are light and refreshing.
Touch: Spring is soft and gentle, with a warmth in the air that caresses the skin. The sensation of sunlight on bare skin, the cool touch of dew-kissed grass, and the gentle breeze that ruffles my hair, or perhaps the damp morning that turns my curly hair into an uncontrollable frizz!
When sitting around the ducks pond, spring reminds me of renewal, the beauty and fragility of new life.
Spring is a season of sensory awakening, it’s inviting us all to immerse ourselves in the sights, sounds, smells, tastes, and textures of the natural world.
After my divorce September 1992, I had a couple of acquaintances, nothing serious then I fell into a relationship with a man, which went absolutely nowhere. I later found out the man I had been seeing for months was married!
That relationship just tipped me over the edge!
What with money worries, another bad relationship, I hit rock bottom. I really struggled with my mental health, so much so that I felt I had no where to turn, my head got the better of me…I really didn’t want to be in this world. The only way I could see to put things right was to get out of this world.
It took months, could have been years for me to get back on track. I struggle so hard to keep going, trying to cover up my troubled life from my girls, my parents and my work colleagues.
I decided to take a college course in the evenings to study counselling. I thought maybe it would give me a much better insight and education into depression. I studied for two years and enjoyed the course immensely. Learning so much about strategies and myself.
I had also made the decision to make my life less complicated.
It was now just me and my girls, I didn’t need a man in my life!
I told myself i would never have another relationship again!
How wrong was I!
In 2001, I think I had been on my own with my two girls for around 8 years. Me and my mum was having a quiet drink in our local pub, when Mr G’s cousin approached me in the toilets, just dropping the odd hint, that Mr G was interested in getting to know me.
Instantly my barriers went up!
No not interested sorry!
A few days later when visiting a friend, Mr G came up in conversation, my friend knew Mr G and confirmed that he was divorced with twin boys.
I did questioned the divorce, I thought he was still married.
My friend said, “ No he is definitely divorced, he has custody of his twin boys, they only live down the road”
I was a little surprised…Did I have a slight glimmer of interest?
It was a few weeks later, on the 1st September 2001, that I was in the local pub. On this occasion we actually spoke to one another, and at the end of the evening we chatted for hours over a cup of coffee…I hate coffee! I was just being polite!
Phone numbers exchanged, we went our separate ways.
I was on holiday in Wales with my parents and my two daughters for a few days, when my phone rang. It was Mr G!
My daughters questioning who was on the phone, they ran around shouting “ Mum’s got a boyfriend” giggling girls jumping up and down.
Mr G asked if we could meet up the following weekend, I agreed.
After meeting a couple of times, we both made it clear that we didn’t want a serious relationship, but we did enjoy each others company.
We had some cracking night out, and a few months later it became apparent that we both had feelings for one another, we became inseparable.
We met parents.
We took the children away to the Lake District for a weekend break, really just to see if everyone got along.
I think it was around 12 months later Mr G proposed.
That’s when Three became Six!
It was certainly a busy household, but we did our best to create a happy family unit from 2 faulty marriages.
We did have ups and downs, we also had lots of laughs and lots of little adventures.
In 2004 came the wedding
Then came the selling of houses to buy a bigger house
My oldest daughter had her own little flat now, her elusive father had come back on the scene now she had left school!
2005 We moved to a bigger house, giving us all much more room and personal space
There was now 5 of us, with the twin boys now at college and my youngest daughter whom was training to be a dental nurse
My oldest daughter by this time had moved to Bournemouth to live with her boyfriend, that was tough letting my first born go.
Our family changed over the next few years, one of the twins moved out, so we now became 4.
Then my oldest daughter whom had moved to Bournemouth became pregnant. That was another exiting chapter, becoming grandparents for the first time.
Harry our first grandchild.
Lots of things changed within our family as the children became young adults, engagements, weddings, births.
Not all plain sailing, we have had plenty of difficult times to navigate, which I do tend to dwell on sometimes,
When our two faulty families came together, it was a complex and emotional journey for everyone involved. We have explored many challenges and triumphs of blending our two families together.
Over the last 40 years, I have been employed in a number of positions, all very different
I had a range of part time jobs while bringing up my daughters in their early years, as they got older I worked full time for Lancashire County Council Building Cleaning Services. I absolutely loved this job and was extremely saddened when they lost the cleaning contracts.
It was then I was redeployed to the Blackburn Joint Divisional Offices. There I worked on the main reception for Social Services and property services. It was ok but not what I was used to. I wasn’t really used to clients kicking off! I quickly realised why we was situated behind a glass screen!
The staff in Property services where a friendly bunch, the manager was something to do with the Round Table and I would helped out at some of their charity events …well it brought in extra funds for me and my girls.
My parents wasn’t that impressed! Not when they found out I was a ring girl between the rounds of a boxing match! Yes I was the person carrying a sign that displays the number of the upcoming round. To me it was harmless fun and i was earning extra money and enjoying myself.
Blackburn Council broke away from Lancashire County and became Blackburn with Darwen, it was then I was appointed Asylum Support Officer, the position was interesting, nothing like any other jobs I was used too. In this position, I would be dealing with the arrival of Asylum Seekers, whom was to be housed in the Blackburn area.
After a couple of years in this position, I was poached by Clearsprings, a company based in Essex. Clearsprings was also housing asylum seekers, but on a much larger scale. This position was a management position with a much better salary, I would be working from home and also around the Manchester and Bury area.
I actually didn’t turn up for the first interview, I bottled it! Clearsprings were very persistent and very persuasive!
I am so glad I did eventually accept the position, because it was the best job I had ever had. Well it was until an Asylum seeker pushed me down a set of stairs!
After the incident, battered and bruised, I was left traumatised by the incident. I quickly realised this job was dangerous for a woman working alone. I needed a career change…but what?
I had been interested in embroidery by the use of an embroidery machine. I wondered if I could possibly create personalised gifts. That’s when I decided to look into creating my own business.
Scottiedogs was born!
Scottiedogs was my embroidery business , where I created embroidered towels, blankets, and clothing items each embroidered with the dog breed of the customers choice.
I originally tested the market on eBay, instantly me and hubby knew there was definitely a market. Hubby designed a website and the rest was history. We got quite a good customer base within a matter of months.
I took the plunge. I gave up my job at Clearsprings and concentrate on my new venture. It was a risk at the time, but I / we took it and ran!
We realised that certain times of the year could be rather quiet, thinking caps on as to how we could retain a steady flow, I came up with teddy bears! I could purchase some teddy bears put an item of clothing on them which could be personalised with the customers message. We did our research and found only a couple of website that was in the business of personalising soft toys. Hubby on designing the website, while I was doing my best source products.
Sourcing the soft toys wasn’t a problem, it was getting the clothes to fit the bears which was a struggle, until I came up with…I wonder if my mum would make the hoodies?
I purchased some fleece and made a pattern, contacted my mum to see if it would be viable, and it worked!
Bears4u was born in 2007 instantly a success! That much so that I had to say good by to Scottiedogs.
With 12 months we were stocking a wide variety of soft toys that could be personalised all with the hoodies me and mum had designed, so the hoodies where quite unique at the time.
We now had a vast wardrobe of clothing for bears and our house was being swamped by boxes of soft toys.
We lived and breathed bears!
I was working 24/7 and it was exhausting. People think that working for yourself is easy…I can tell you it is not!
Bears4u was taking over our life and our home.
As our children moved out, their rooms were immediately used as a storeroom.
We where working so hard, we found we had very little down time. We decided to purchase a static caravan in Fleetwood, it was only 60 minutes drive from where we lived and it would take us away from working at weekends. We desperately needed time away from bears. When at home I just worked, i couldn’t switch off, I was obsessed!
The caravan was great, I couldn’t wait for the weekend.
5pm on a Friday it was down time!
It was that caravan that brought us to where we live now
Bears4u was a huge success and we was well known by many companies across the UK.
So you can imagine, when my sidekick came along to throw the spanner in the works, I was devastated to let Bears4u go.
Bears4u was my life for 12 years and it left a huge empty space.
A huge space that I still can’t fill, I don’t think I ever will.
As a single parent to two daughters, I was faced with various challenges, such as financial difficulties and lack of emotional support.
It was overwhelming juggling work, household responsibilities, and parenting my duties. Finding reliable childcare, was challenging, eventually it did get a little easier as the years went by, despite all of the challenges.
Weekends when spent in creating memories any way we could. You don’t need lots of money to create memories, it’s the special moments spent together that are priceless. It’s the paddling in a stream and the picnics we had together that my daughters remember.
On a Sunday each daughter would take it in turn to spend time with their grandparents ( my mum and dad ) which gave me a little break but I was never alone.
My daughter’s father quickly forgot about his responsibilities of two daughters. The support of money and the contact times, never really materialised. Even though everything was agreed during the divorce proceedings.
Nothing surprised me, where he was concerned.
What he didn’t realise was, he was letting his daughter down and driving a wedge between their relationship.
Me…I was getting really good at distracting my daughter from the trail of disappointment he would leave behind.
Raising my girls alone taught me to embrace my independence and resilience. It taught us all some very important life skills, problem-solving, strategies, and also decision-making abilities. Encouraging our creativity together and I think gave us all more confidence in life.
The one thing I didn’t do, was to remember that you cannot pour from an empty cup! Caring for myself was last on the list.
Sometimes I was a little overwhelmed by everything, which did result in bouts of depression.
Raising children alone is not easy and it was a journey filled with ups and downs, triumphs and challenges, but I wouldn’t have had it any other way…They are My Girls!
Anything in life is possible if you believe in yourself.
This wasn’t the easiest time of my life, but we survived, and we learned so much from those 8 years of just being the three of us.
Anna Wharton, Wendy’s ghostwriter, very kindly gave me permission to share
The video is about 9 minutes long, time to sit, get a cuppa and listen to Wendy as she talks about why people should have the right to choose a death with dignity
You may or may not not agree with Wendy’s view, we all have our own opinions and we all have the right to choose
As it is your choice to watch the video
You are welcome to share, it is what Wendy would have wanted
Too Young for Dementia? 