Reflecting on a Life Changing Year – Part 1

What a year it’s been……..

2014 started off a dementia free zone. This time last year dementia wasn’t on my radar. It was gently simmering in the background. Little did I know that 7 months later, it would take over my life. I knew very little about it or the work of the Alzheimer’s society – it wasn’t in my website favourites as it is now! In fact, at that time, I’d never been on the Alzheimer’s site. My resolutions or plans for the year ahead did not involve living with dementia. I had 8 more working years ahead of me in the NHS – I loved working…I’d never even heard of a ‘blog’… It just goes to show how life can change in such a small window of time.
Here I am now making short term goals, planning to take early retirement, and doing all I can to promote living well with dementia – what a difference a year can make.

Although dementia had been mentioned as a possibility in the early part of the year, it wasn’t real – not until the day you have a confirmed diagnosis and not until the actual words are spoken does it becomes real. 31st July 2014 was that day for me. You never quite know how you will react to devastating news until something devastating happens. My brain went into survival mode, thank goodness. It would have been very easy to sink into depression, but I’m thankful that I didn’t. My journey had started.

It was a bumpy, frustrating start to begin with – little support available where I live post diagnosis – apart from my wonderful daughters and friends. That is now about to change as plans are now afoot to make support available for all those newly diagnosed and is due to come to fruition in the new year thanks to the work of Emily Abbott and the local dementia forum group. I’m looking forward to working with them to ensure those with dementia are included in this plan – watch this space

My local memory clinic services fell short in every way and offered no support in the first few months post diagnosis – one of the psychologists has now asked those with dementia at the dementia forum group to be involved in the redesign of the service – watch this space

No help was available at work – the very place I expected to be able to rely on – after all Leeds Teaching Hospital treats patients with dementia, why wasn’t it there for me as an employee? Helen Gilbert (Head of Patient Services) has made it her goal to personally deliver Dementia Friends session to all her 80+ managers – I’m helping her with these sessions.
Furthermore, NHS England have asked me to meet with them in the New Year to discuss a toolkit for employers to help support staff – one for those with dementia and one for carers – watch this space

To be continued tomorrow…………..:) out of bad comes some wonderful opportunities…I hope 2015 is kind to you all:)