As 2017 came to a close and endless googling, I turned to Twitter to see what I could learn about my new world of Dementia.
In January I took part in my first research study and Twitter became a source of information and support, which I am truly grateful for. Twitter was an empowering experience, which made me realise that the media perceptions of wrinkly hands and suffering didn’t apply to me and reignited my passion for good quality person-centered care, which had been my ethos throughout my time working in care.
Some of the “new” initiatives I read about made me smile, such as #EndPJParalysis, something I had practiced since my first day working in a Care Home nearly 20 years ago. As the years went on, I am became an advocate for patients, enabling them to speak out and stand up for their rights and challenging Doctors and doing the best I could for the people I cared for.
Another turning point was at the beginning of April, I began to read about the “A Good Life with Dementia” course, which I was lucky enough to attend, even though it meant a 130 mile round trip and I had begun to write my blog by this time.
At this time I also learnt that simple things like an app on my phone, so that my wife could track me and thereby reduce her worry, enabled her to allow me to get out more and feel like I was living not surviving. 3 more research studies followed and I am now a couple of months into a 1 year study.
Since then, along with Twitter and a new Facebook group, I have joined a number of Groups:
South Yorkshire Research Advisory Group
Young Onset Dementia & Alzheimer’s (YODA)
Young Dementia UK Network
Dementia Alliance International
DEEP UK SHINDIG Group
along with a couple of Dementia Cafe’s. Last week I had discussions with Sheffield University and Dementia UK about bringing Admiral Nurses to Sheffield and next week I will be trying out a Dementia Friendly Cinema screening.
6 months into 2018, my lived experience is more positive. I seem to be in a much better place going forward and the path of learning, advocacy and raising awareness have given me the strength to continue fighting mine and for others Dementia for as long as I can.
My blog reader, as well as record of my journey, I hope, will perhaps empower someone going through the same journey as I started about four and a half years ago to put aside the negative stereotypes and look for ways to live their life with Dementia.