Sometime life feels like it’s in limbo. Waiting for something. Thinking I should always be active and not sitting alone quietly sewing or enjoying a film on TV. Waiting for time..to what..pass? I don’t know, maybe this is just how dementia feels like? Does it feel unhappy? Nope. It just is how it is.
Sometimes when I have a diary full of meetings, and events, I just roll with whatever that day brings without feeling I have had any input into organising it but have simply turned up and been a small part of it. A big hand that fills my diary and hands it back to me smiling. “This. This is how you will fill your time in a pleasant and meaningful manner“. I smile as I take the diary and look with curiosity to see what pleasures I have for the coming week.
Then there is the ‘To Do’ lists I have written down on the righthand page of my Moleskine Diary. This, however, gives me a hidden creeping fear, no not fear; anxiety, yes that’s it. Anxiety. I have agreed to do this thing, and now I am scared that I cannot carry it out or finish it, or even start it. Always in my head ‘I can do that’ , until the time comes to start it and then the dementia reality sets in. The hesitation of indecision, the confusion of my own instructions where everything falls apart. Followed by the quiet talking to myself – “I can do this, step by step. Don’t overthink it“. Then I when I finally start I am more confident to say whether I can do it, or whether to say I tried but it is now beyond my capabilities. Admitting when you can no longer do things can free you up to do more of the things that you CAN do.
So, in reality I have a mixture of a Diary life, and my chill out self preservation life. I attend meetings, give talks about my dementia, am part of a group working towards making my local town dementia friendly. Then I have my withdrawal from the world life where I stay at home, alone, enjoying my own company, doing a bit of housework, and a bit of craftwork. But, I also have my craft workshops for dementia in my diary that I attend and love because it gives me inspiration, gives me a place to be with other inspiring people living with dementia.
Oh I have been busy recently. From the initial funding and group set East Durham Creates of Silk Painting for people and carers of dementia, additional funding has been found to continue the group which we are now calling Making Art Time. I say funding was ‘found’ but it is never as simple as that is it, Nicola from The Barn at Easington has been the most wonderful advocate for our group and she sourced the funding for us. Her hands on approach to art is amazing and addictive and we have been immersing ourselves in creating from nature. With walking in the Dene (woods) collecting leaves, berries and anything that takes our eye, reading poetry whilst sitting on fallen trees, we have embraced natures peace in our dementia journey.
For me it’s quite spiritual being in a wood in autumn when the leaves are a mass of reds, golden with a variety of browns and greens. There is a wonderful silence that you can only experience in a wood or forest, with occasional natural sounds of cracking, shuffling and a bird or two singing.
One day we created shapes and pattens on the floor of the wood amongst the trees using moss, logs and leaves; skewered coloured fallen leaves on broken twigs and hung them amongst the brown branches.
It felt like being a child again.
In January our group is creating a wall banner of mixed media, representative of the group.
The most important thing is that I love going to this group. It is not noisy in the sense that it could be overwhelming. We talk, laugh, exchange thoughts, ideas and most of all we understand each other. It is comfortable to be amongst company who may need to ask what day it is, or what we did last week, or who is picking us up.
An arrangement of wax dipped autumn leaves and berries collected from woods, with a pigeon feather. Mounted on a round slice of branch originally used as a prayer message (written on underside) from local church.
This is a piece of textile are that I have done at home. It is a leaf hand sewn onto hand dyed cotton. Needle weaving to complete damaged edges on the leaf. Seed stitch around edge, with a two spot ladybird. It represents my dementia with the holes in the leaf repaired. The seeds around are memories which are scattering but not yet gone.