My Dementia Awareness Week 2016

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This last week has been my busiest week since I launched my book on dementia titled “Unbreakable Bond.”

The week actually started last Friday when I recorded an interview with Pirate FM, one of the biggest commercial radio stations in the South West. This interview went out on Monday and you can listen to it here:

http://www.piratefm.co.uk/blogs/wheres-your-head-at/unbreakable-bond/

Then on Monday, ITV Westcountry filmed a feature on dementia with me, which aired across the southwest on Tuesday evening:

http://www.itv.com/news/westcountry/update/2016-05-18/dementia-fears-preventing-people-from-seeing-gps/

On Wednesday I was invited by Alzheimer’s Society South West to speak at the Cornwall Dementia Action Alliance Partnership Launch at the Royal Cornwall Showground.

This was all off the back of being published in “The Journal of Dementia Care” last week.

The best thing about being this busy, is the number of people I am being able to touch and impact with my story, as that is what it is all about. Thanks to all these media companies and charities I can touch more people than I can by myself and I appreciate every one of them.

Inspirational

I have met some very inspirational people this week and heard a lot of personal stories about how dementia has affected them. If it wasn’t for Dementia Awareness Week I may not have heard these stories or been touched by them and it has been so important to me to hear them. So often in life we get caught up in our own lives and problems, but hearing from other people gave me insight and perspective, which was really appreciated.

Thanks to everyone I have worked with this week, with the raised media profile, my book “Unbreakable Bond” made it back to the top of the bestseller charts. This wouldn’t have happened if it weren’t for everything that happened this week. It’s not for vanity that this is important but because the more books I sell, the more lives the story of my mum and I can help and that is what it is all about.

Proud

I hope my mum is proud of what has been accomplished this week and the fact that she can continue to play her part for years to come in helping people affected by dementia.

To find out more about my book and get a copy go to:

www.unbreakablebond.co.uk

Keeping the ball rolling

It is now over a year since the launch of my book “Unbreakable Bond.” I am still as passionate as I was on launch day to get this book in to the hands of many people as possible. This has meant since early 2015 I have been keeping the ball rolling on the promotion of the book.

I have no promotion team or advertising budget, so every bit of attention I have to scrap for and I am willing to scrap. Every week I try to set aside a small manageable amount of time to dedicate to spreading the word about the book. It would have been so easy for me to just blitz the promotion at the start and then do nothing, but I think this slow and steady approach has paid dividends. I am seeing constant sales of the book and regular new avenues of promotion opening up.

Mental Health Foundation

It’s like this week the Mental Health Foundation featured a piece on my book, which was seen by thousands thanks to their social media promotion:

https://www.mentalhealth.org.uk/stories/my-mum-and-i-unbreakable-bond

This has lead to the book getting back inside the Top 10 on Amazon for its category, which is amazing. With my hard work and the support of others this book isn’t fizzling out or going away, which I am immensely proud of.

Features

I also have features coming up later this year in the Dementia Care Journal (a leading Dementia publication) and some local radio stations. Even though each week there isn’t a new article somewhere about my book, there is always something going on behind the scenes.

At the moment I am building some great relationships with important and influential people in the dementia world, which I hope will lead to great fruit in the months and years to come. Publicising something is a game that you have to keep the right mind to each week. Some weeks you get lots of support and activity because of your work and some weeks you don’t but you need to work your hardest each week regardless of what the outcome is, as it is only by doing this that great results come.

I am forever thinking of and finding new ways to promote the book and I hope that for years to come that this book continues to be a relevant and a used tool to help people currently caring for people with dementia.

To buy my book or find out more about it go to www.unbreakablebond.co.uk

Sharing and impacting

Last Friday there was no blog on this site because I was away showcasing my book “Unbreakable Bond” at a dementia conference in Plymouth. At the conference I got to hear from the CEO of the Alzheimer’s Society Jeremy Hughes and from Angela Rippon OBE, but more importantly I got to talk to people at the coalface of caring and supporting people with dementia.

I listened to some of the speakers, I was sitting there just hoping my book could touch and impact people in the way they were impacting me. Not because I wanted to be on the stage, not because I want to be a big name, but because I know how it feels to be touched and inspired and it would mean the world to me if it was my book that was having that impact on others.

Learning from experience

When I was selling my book at the conference many people said they were going to put the book in to their libraries and staff rooms at work. Them saying that meant the world to me, as I want as many people to read the book as possible. I love conferences as I love getting the chance to speak to people who have read my book or brought a copy of my book. I wish I could speak to everyone who has brought my book, to thank them and to hear their story. I love people’s stories, I think we have so much to learn from each other and we need to put more focus on learning from other people’s experiences.

I think everyone has something important to share and I just hope that by me sharing my story it encourages others to share and to feel that they have something important to share, because everyone does. We can all learn from each other and something that really got me last week was the thought that the more I learn, the more I learn than I know so little. You can never know too much or enough, so please join my movement of people who want to learn from others and share with others.

Endorsement

I got to speak to Jeremy Hughes at the conference and he promised me that he was going to get my book out of the Alzheimer’s Society Knowledge Centre and I believe that he will. I hope he is touched by the book and that the Alzheimer’s Society can get behind it, because their support and Jeremy’s endorsement would really help get the book in to the hands of people who could be helped by it.

My book “Unbreakable Bond” is the book I wrote about the experiences of caring for my mum who was diagnosed with early onset dementia at the age of 51. The book is available at Amazon, Barnes & Noble, Waterstones and many other great book stockists. To find out more go to:

www.unbreakablebond.co.uk

 

 

Shining a Spotlight

Today leading national newspaper in the UK “The Independent” featured my story of caring for my mum (who had early onset dementia) in their dementia supplement to mark World Alzheimer’s Day. It is always a great honour and privilege when a media organisation with such a big platform features a story about you, especially for someone like me who isn’t a celebrity or in the news much.

Attention

My wife asked me a question last night asking if I liked being in the news for caring for my mum, which I thought was a very interesting question. It’s a tricky one for me because I didn’t care for my mum just so I could get recognition afterwards and I don’t want to be seen as a hero for doing something that I did because I thought it was the right thing to do. I don’t want anyone to think I am showing off or craving the attention that being featured in newspapers like this gains you. There are however many reasons why I like being in the news for caring for my mum and the book that I wrote about our story.

The first reason is I think that people who give up their lives to care for others need to be celebrated more, not only in the press but in our communities as well. Caring for someone is an amazing thing and as worthwhile, if not more worthwhile than a lot of people who get featured in the press on a regular basis for being a ‘celebrity.’ By celebrating carers it will encourage more people to become carers and make carers feel better about themselves, which can only be a positive thing.

Unnoticed

There are so many carers out there who go unnoticed and many who are reluctant to share their stories and it’s because of these people that I feel it is important that I share mine. I am quite media savvy, I am confident and am an ok writer, which makes it very easy for me to share my story. When I share my story with others, always in my mind are those that are going through tough times currently caring for others. My goal with my book that I have written is to help others and hopefully make someone else’s life a bit better, I keep that same goal in mind whenever I am speaking to the press or other organisations about my story.

Hope

The hope I have is that many people will read my story and be impacted by it. That they will be moved in to action and that it will help them in some way. As the population of this world continues to grow older I believe more and more will need to be ready to care for someone, so the best thing I can do to make a difference is help prepare as many people as possible.

I’m not a hero, I’m not a celebrity, I’m just an ordinary person like you but I think it is the ordinary everyday folk that make this world tick and are the ones who are doing amazing things without being noticed. The power to change this world isn’t just with the headline makers; it is with you and I.

National Exposure

As many of you are aware, I have written a book about my experiences caring for my mum who had early onset dementia. What you may not also know, is that I am a media volunteer for Alzheimer’s Research UK, the leading UK research charity aiming to defeat dementia:

http://www.alzheimersresearchuk.org/

This week Alzheimer’s Research UK launched their first major awareness raising campaign, with a host of media activity. As part of this activity, adverts started appearing on TV and articles in newspapers. Yesterday I was alerted to the news that one of my quotes had been used not only by local newspapers, but by ‘The Telegraph’, one of England’s leading newspapers:

http://www.telegraph.co.uk/

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My name has appeared in national publications before, but I think is the first time I have been quoted. To be quoted in an article about dementia is very humbling to me. I have published a book as I want my words to make a difference in the fight to defeat dementia and this week they have been put out there in front of a huge audience.

One of the ways I want to be remembered in life, is for being someone that did something about dementia. When people think of the name Adam Sibley I want them to think of someone who did something to change the world for the better.

I want to increase my position of influence, so I can then use that increased influence to make even more of a difference. Having my name in ‘The Telegraph’ I hope will be something that does increase my position of influence, but only time will tell. I am not hungry for notoriety for myself, but for the difference I could make with it.

I am proud of both my book and to be a media volunteer with Alzheimer’s Research UK. My hope is that both things can and will make a difference for many years to come. I am in this fight against dementia for the long haul. Dementia isn’t something that is going to be conquered over night but I am aware of this and am ready for this. My aim is to not give up no matter what and keep doing my little bit to help.

Support

If you follow me on social media, you will have noticed this week that I have been trying to drum up support for my new book “Unbreakable Bond” a story of my experiences in caring for my mum who had early onset dementia. The book can be purchased by going to the link below (cheeky plug I know):

http://www.amazon.co.uk/Unbreakable-Bond-Adam-Sibley-ebook/dp/B00UM6ATBW

I have received some wonderful comments of support from people who have read the book this week, which has so touched me. It was touching the lives of others, with my mum’s story, that was the reason for writing the book in the first place and I am so glad that it is already happening.

Social Media

On top of these comments from readers I have had lots of people on social media promoting the book for me, by retweeting things and putting up their own posts about the book. Whenever this happens it makes me feel so lifted inside and makes all the hours I spent at the keyboard thrashing the book out worthwhile.

The one thing that has saddened me however, is the reluctance by so many Alzheimer’s / Dementia charities and organisations to acknowledge or support the book. Some organisations won’t even extend the courtesy of replying to an email when I email them about the book.

First Hand Experience

I am somebody who has first hand experience in caring for someone with dementia and just want to share those experiences. I am not looking to make a profit out of the book and just want to do something positive. I am somebody that has off my own back produced something to try and help people, with no hidden motive behind it.

To create the book I haven’t been paid, I haven’t had office space paid for and it hasn’t just been a job that I have no connection with. There aren’t enough people in this world who just try and do something to help others, so I get really frustrated when people don’t embrace others who are willing to try and help others.

Lack of Support

It is because of the lack of support that people get and the uphill battle they have to face to do something, that we don’t have as many people as we need in this world, trying to change it for the better.

In my book I am not trying to promote it saying I know more than anyone else on this subject and that I am the one that should be listened to. I am just trying to share a book, which may encourage others, lift their spirits or make them think differently about things.

Using my Skills

I wish I had the funds and the scientific knowhow needed to try and rid this world of this awful condition, but I don’t and I am just trying to do what I can to help. I am trying to use the skills and the platform I have been given to do something positive in a very negative situation.

I can sleep knowing I am trying to use my skills to influence the world and that is all I can do. The only thing I wish is that we had more people in this world who instead of being roadblocks were fuel stations ready to fuel those who have the potential to change the world.

I have no more right to have my voice heard than anyone else but I do believe I have the same right.

Timing

Two years ago my mum passed away after a battle with Early Onset Dementia. In the final days I spent with her in hospital I made her a promise, a promise that I would write a book to share her life, our experiences and a book to help others around the world who may be facing similar battles.

Days after she passed I started work on this project and within 6 months I had a book I was happy with. Once I had it finished, I managed to find an amazing editor with a wealth of experience who turned our story that I had written in to a very readable book that I was beyond proud with. I then spent the last year trying to get a publisher to support the book. I talked to many people within the industry and got ever so close to getting the book to market through a publisher but sadly it didn’t work out.

This left me in a position of not knowing what to do. Did I keep on going, trying to find a publisher or did I get this book that I had a desire to share with the world out by some other means. After a lot of thinking yesterday I took the plunge and made it available to download in eBook form through amazon:

http://www.amazon.co.uk/Unbreakable-Bond-Adam-Sibley-ebook/dp/B00UM6ATBW/ref=sr_1_2?ie=UTF8&qid=1426236586&sr=8-2&keywords=adam+sibley

That afternoon, after I had made it available to download I heard the news that world-renowned author Terry Pratchett had passed after his battle with Early Onset Dementia:

http://www.bbc.co.uk/news/entertainment-arts-31858156

Sometimes we do things in life without knowing why and it turns out to be a poignant and sobering moment and this was one of them.

Using what you’ve got

I will never have the money or knowledge that it will require to make the scientific developments that are needed to help us combat Alzheimer’s and Dementia but I have a heart for people and personal experience, which I think are the important things that I can bring to the battle.

I want to live in a world where there is better care for people with Alzheimer’s and Dementia whilst we wait for a cure. I want to live in the world where the general public has a better understanding for what people living with the illness are going through and know what they can do to help them. I want to live in a world where we support the people who care for friends and family members who are living with terrible illnesses. I want to live in a world where we are prepared and ready to care for others if and when the time comes.

A voice for the voiceless

Regardless of our situation and our battle we all deserve, care, support and love. There are so many people who have been robbed of their voice because of their illness, ripped of their spirit, their character and their fight. We need to be their voice, their hope and their fighter.

Let’s help each other

If you are currently caring for someone, let me on behalf of this world say thank you. We need to be a world that cares for one another and I don’t think there are many better things that you can do on this earth than care for another. We all deserve the best level of care we can get and we need more people that are willing to give it.

My book is available only through amazon at the moment in eBook form as it is the most accessible and popular place to get books from this day. For the first 90 days I had to put a price to download it so I set it at the lowest it could be which was 99 pence or cents depending on what country you are in. I didn’t want to charge for it as I just want to get it in to the hands of as many people as possible, so when I can I will be making it a free eBook. I have also not put any DRM on it so please if you do download it; please feel free to share with others. The number of downloads this book gets isn’t important, the number of people who read it is.

This isn’t my first book but it is the one I am most proud of. I hope that it is a fitting tribute and legacy for my mum. I hope that through her life and through my words we can make a difference. I hope it encourages people to seek help and to not suffer alone. If it just helps one person then the months of hard work will be so worth it. In the heat of emotional situations we make many promises and many are not kept but I am so glad that I kept this promise to my mum to write a book in her honour.