The most unlikely volunteer to talk about…. “How I have lived with the Diagnosis of Alzheimer’s”
I was diagnosed with early onset Alzheimer’s in April 2010 aged 59, “A life time ago”. I hope that we can repeat this event and that it promotes better understanding of our experience and ultimately that a cure is found. I joined the group because although we all need a little direction from time to time, we do not need to be led all the time; being involved in the core group and peer support groups is an opportunity to be heard and create something worthwhile in a mould of our making. It’s fantastic when someone gives a few individuals a stage to share their life stories in the common interest that it will inform some and help others to know they are still able to function in a way that shares achievement and respect.
There I am, just attending another meeting where I attend a small group of fellow people living with Dementia, who are doing their very best to improve conditions for those living with Dementia. This group is a part of SURPS, a group supported by the Alzheimer’s Society.
I am just a member of a group of about 6 people where we have no leaders, just supporting each other. Since my diagnosis in 2010, some 8 years previous, my confidence had been shattered to nearly the point of completely disappeared forever.
I can’t be sure who initiated it, one of Trent Dementia’s Trustees who was moving on from her role at the Alzheimer’s Society and told us about the empowerment project at Trent Dementia and a group of people who were interested in supporting people with Dementia in a new way. Little did I know that 2018 was going to have such a big impact on my life and improve my outlook and ability to take on tasks, that I thought I could no longer attempt.
It started with a series of meetings with Dr Jane Rowley from Trent Dementia charity. I must admit I missed the first meeting as I was away on holiday, which I tend to do a lot.
I find life with Alzheimer’s very difficult and sometimes I have not been able to control my frustrations as well as I should.
The distractions of time away and different locations have got me through some difficult times. When I attended the second meeting, I was on catch-up mode, linking up with one friend and some new faces discussing something called an Event and DEEP, a small group of likeminded people trying to improve lives of people with Dementia.
How could an Event, if created by such a small group of people, reach out to those living in the Nottingham area with Dementia?
So, starting with an empty page and listing carefully what everyone would like to hear and talk about. The ‘how’s and ’why’s, ‘should we’, ‘could we’ do anything to improve things? The pages quickly filled with ideas and a Dementia Event was slowly becoming a very special Event in the planning.
We scrutinised venues and dates until we were sure we could achieve the success it deserved. It would be wrong not to mention the help and assistance we received from the organisational staff at Nottingham Race Course, who exceeded in every area to make the Event to be a smash hit with which we were full of pride to be involved in. When we decided on a date for the Event, November 14th, 2018, my heart plummeted, when I realised, I would not be in the Country, but would be on holiday in Cyprus.
The “Living with Dementia Event” was in the final planning stages and it was obvious to me that I wanted to see it through to the end. Each of the planning group had agreed to share with the audience our inner thoughts of how we had experienced the effects of “Living with Dementia”. For those of us living in Nottingham we took it on ourselves to spread the word about the forthcoming event. The demand for tickets for the Event was slow to start but we filled our target and made it the undoubted success we had hoped for.
I arrived home from Cyprus the afternoon before the Event. I made a quick change of clothes and travelled to the venue, to be overwhelmed by the efforts of the Nottingham Race Course Team. When we arrived on the morning of the Event, I was filled with nerves, nervous energy and, to be honest, panic. The big day that we had planned for months was now here. We were informed that we may have to give some background information to the press on an individual basis. We all shared that feeling of what we have created, we are now expected to take over the stage without the comfort of someone helping us when we get tongue-tied and forget our words and thoughts. Those of us who have lived with it, know that sometimes your head just shuts down, and you feel a little tremble in your wrists and lips, as you try to say something of an introduction. As you gaze at a large audience you notice friendly faces greeting you and willing you on……… One huge gasp of air, and you’re off, telling them your inner thoughts and experiences, who now seem to have become your friends as they nod and share your experiences.
The feelings and emotions of achieving a successful event came much later as the audience kept asking for more than we had planned for. They stayed well beyond the time we had set for finishing to express their admiration to have overcome our disabilities and fears so professionally.
More and more questions were asked, drawing the obvious need to do this Event again. With great delight our ‘benefactor’ named Tom, from Trent Dementia Charity announced that somehow, they will repeat this “Living with Dementia Event” in 2019. (Tom Dening, the chair of Trent Dementia)
Over the next forthcoming months, my close friends and family said that there was a change in me: A positive-ness, a reassurance in my voice and the ability to laugh and have fun, something I had lacked for several years. This involvement in planning and producing something of huge importance to people in similar circumstances and to those who have to support them, all gained something, and will be repeated. The experience has given me the knowledge that I can achieve more and so on. To create an active DEEP core-group in the Nottingham Area has started January 2019.
We now look forward to creating a network of people to find that positive energy and emerge with a spirit to “Live better lives with Dementia”.
Gold memories of Steve Litchfield.
Many thanks to: A formidable team: Jean, Shelagh, George, Jane, Ghazal and myself.