Been just as busy February as January. Last week I spoke at the launch of Blackhall and Hesleden Dementia Friendly Community. Since our own launch of Dementia Friendly Seaham things have been moving along nicely. But boy, these things take work, and time and commitment.
What does it mean to launch a dementia friendly community? Look around your own community and see if there are any stickers on shop doors that indicate that staff have taken part in Dementia Friends Sessions. How many do you see? The large supermarket, does that have a dementia/disability friendly slow checkout lane? What about cafes? Your local library, council offices, your GP Surgeries? What sort of groups are available; support for carers, peer groups, and activities, are in your local area? Where do you think you would find out information telling you what there is?
Out of all of the members of our working group there are, effectively, only two of us doing anything. Working groups, should be that, not just meetings where we discuss and others ‘do’. However, there will always be people to want to make a difference and do put their time into making a change. Equally there will be people who can network locally which is just as important.
My talks are becoming slightly more hard hitting, so that I am prepared to say that I am still waiting to meet more people like myself in my area. Where are the people living with dementia I ask? Why am I the only person able to speak at these events. Reaching people in your own community living with dementia is not easy when you have no provision in place to sign post after diagnosis to support that does not yet exist.
My area with the aid of the Alzheimer’s Society have made wonderful strides towards looking at how we can be more inclusive to all. There are a core of people that I meet at these events who are fabulous and work extremely hard at promoting change. What I would now like to see is the general public supporting us. I am touched when people come to speak to me at events telling me how brave I am to speak out, but I don’t feel brave, I am not brave. I just have a desire to make things better for myself, and for the other people living with dementia in my area. I just want to be able to have the choice of different groups I can attend or get involved with. I don’t want to be sitting at home whilst my Alzheimer’s progresses and have no art group to go to, or anything similar.
When I am at home I am scared. I feel dread at having to think and write a talk for the next event. Maybe this is my dementia making me shrink back in stepping forward. Part of me longs for someone else to take over but then I know I will never be able to step back and not get involved. There is a wonderful core of people who are working hard, but I want to be a voice for dementia because I live with it, they don’t.
It is hard work for me to do these things on my own at home, the will is there but I have to admit to struggling to follow through sometimes. I am finding that I can no longer organise things that need to be done ‘just like that’.
Days when my Fibromyalgia is flaring and I am wracked with pain making it harder, and now it is possible that I also have Chronic Fatigue Syndrome which is pants quite frankly! I have to pace myself so that I can do one major thing per week with the Alzheimer’s Society, attend Art Group, my Knit n Natter group, then sleep the rest of the week.
I find it harder to get things sorted out at home these days, the small damp patch that needs doing before the walls can be painted, and the skimming of the ceiling too. I need to find someone to help me dig the garden over, re-fence……. Why can’t I just do these things? I don’t know why, all I know is that I feel scared to do any of it. It doesn’t make sense. Once I have forced myself to do it I am relieved. It almost feels phobic. How I wish I had someone who could actually sit and do these things for me, or with me. I am understanding that it may be time to de-clutter massively ready for when I progress. Time to get a cleaner to help me keep my home clean and tidy.
In the meantime I will continue amidst the constant exhaustion, to give a voice for dementia when I can.