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.