About our journey
Our Mum, who sadly passed away on the 26th September 2016, had dementia with Lewy bodies. Dementia is a truly terrible disease that dramatically changes the lives of not only the person living with dementia but their whole family. Since Mum first got ill in around 2009, my life has profoundly changed, as has my whole outlook. As a result of Mum’s illness I now feel passionate about raising awareness about dementia (see below), to try and add something positive from what has been the worst thing to happen in my life.
A lot of people are still fairly ignorant about dementia. I do not judge, as that was me before Mum got ill. I didn’t really know the difference between dementia and Alzheimer’s. I had never even heard of Lewy body dementia or any of the other rarer forms. I also believed that dementia was mainly about memory loss and wasn’t aware of all the other upsetting and challenging behaviours associated with the disease. And because I wasn’t aware, I wasn’t prepared, and in my view Mum suffered as a result.
About this website
I started this website during Mum’s illness as a way to deal with the grief that is inevitable with dementia and to share our story, to show that love can endure. I also wanted to share key information that I have learnt along the way, to try and help the millions of others who are also coping with this horrendous disease.
However, I would like to highlight that I am no expert in dementia. Everything on this site is what I have researched following Mum’s illness and what I have experienced firsthand with Mum. I have tried to keep things simple, including only the basis facts but signposting where you can find more help and expert advice. Where possible, I have related to our experiences with Mum, practical tips that we learn’t along the way, often the hard way!
Below is a summary of the information available.
- An overview of dementia and the diseases that cause it.
- Some more in depth information about dementia
- A section dedicated to Lewy body dementia.
- Details on how dementia is diagnosed.
- Some of the common symptoms of dementia, particularly those that are challenging to manage.
- Tips on how to maintain health and well being.
I hope you find this website useful and informative and any feedback would be greatly appreciated.
Raising awareness about dementia
To help raise awareness, reduce stigma and promote a dementia friendly society, I have started the following initiatives.
- Started a Facebook Page.
- Written a book ‘Same Destination … Different Journey’ which is the story of our journey with Mum through her illness and the impact it had on our family. The book also includes all the key information that you will need if you or a loved one is affected by dementia with Lewy bodies.
- Created this website to share basic information about dementia and to share our journey (you can read the story of when Mum first got ill on the ‘our story’ page), the things we struggled with and the things we have learnt long the way.
- Created a range of designs to raise awareness about dementia. These designs can be added to products, such as t-shirts and bags, provided by Spreadshirt and Amazon. More details can be found on the Shop page.