Read a bit about or Member of the Month for October 2014, Ronnie Lomax:
As you can imagine the effects and devastation being at an early age I was (40). Most people consider it being an illness in a more mature aged person.
Younger Dementia is not widely known as it is considered an older aged illness and yet younger people in their thirties, forties and fifties are Diagnosed with Dementia.
Life has many challenges, mine has more than you could perhaps imagine.
When obtaining a diagnosis and then trying to access age-appropriate services, it can be a bit of a lottery and in many cases can just depend on your post code. I have found that 99% of services for this illness are based on models towards
the older age care services or the “recovery model” and Younger People with Dementia as a minority group are lost in the system, because no one knows where to put us
“We feel that we are the forgotten ones”.
I attend a day care centre where we are supported by staff and meet other service users who all have Dementia, it gives us a chance to support each other. We play games , walk around the garden, paint and craft work, and listen to music. The staff do what they can with their limited resources.
Working on behalf of younger people who have a diagnosis of dementia, I am trying to improve their lot. What might surprise many onlookers that each of our members has a diagnosis of some form of dementia. The need to keep our minds active becomes more and more important, not to be wrapped in cotton wool by the people who love us or are trying to help us. Who are we, what makes you “you” it’s your memories and life experience, relationships etc sadly in time dementia will take this away “bits at a time”. At which point we won’t care how much cotton wool you use.
Let’s live for the moment we’re in!
Dementia affects people in different ways and each person will find their own approach in time to dealing with the changes that occur. (And it is not going to happen overnight) it could take a long time and in some cases they never come to terms with their condition.
With the support of Crafter’s Companion it has allowed people to express themselves in paper craft & art. Crafter’s Companion has supported the Younger Onset Dementia Service based in Manchester, 70 Daisy Bank Road, Victoria Park, Manchester M14 5QN (telephone: 0161 882 2171) for Christmas 2013 & 2014 allowing users at the Day Centre to make Christmas cards.
I am trying at the moment to support the service as much as I can, whilst I can. I am looking for support for a Printer/scanner and laptop so people could make their own scrapbook/memory book and for printing onto card.
In 2005 I wrote a poem to express feeling and putting into words what I and others were going through:
This passage of life you cannot control.
Some days are good, Some days are bad.
This invisible illness is so sad.
So look at life and you will see, how it can change both you and me.
Struggling to capture the present For my future
Had a thought and then it’s gone, My mental camera will not stay on.
The lights are on, but no one’s at home, The family all here, but you feel, so alone.
Woke up this morning and all that I could see was a blue and grey mist in front of me
Waiting, hoping pictures will stay, to stop Sands of time slowly trickling away
So Theft of thoughts and the right words to say
Many past and present Memories have gone away
So grasp our lives with both hands and educate other people to understand.
The Forgotten by Ronnie Lomax (2005)