On the weekend, I watched an English program called ‘Wallander’, one we’ve seen previously, that is playing again on Foxtel. The challenge of TV entertainment in this house, especially for my darling husband, is we’ve seen many things before, and although some have an odd scene that I recognise, or a vague familiarity, many times they are like ‘first times’.
This particular episode (Faceless Killers) shows a scene of Wallander’s father who has dementia, ‘behaving’ erratically by burning his belongings including his famous paintings. Wallander arrives, and eventually stops his father’s destruction of his life’s work by wrestling him to the ground. The father then sits and with obvious and deep frustration says; “I’m trying to clear the space inside my head”, and proceeds to bang each side of his head with his fists.
It is a desperately sad scene, but actually depicts quite well the feeling I get when I can’t recall something, especially those things where ‘I know I know’. It also reminded me of the lady I used to spend time with as a volunteer in my father in laws nursing home, who was always shocked to find she had told me things about her life. She also hit herself on each side of the head, with great frustration, repeatedly saying ‘It’s not all empty, I knew something was in there’.
The image of the jigsaw puzzle visually represents what it feels like… it’s as if pieces of the brain can’t be found. Where do they go? Why can’t I find the words, or recall those events or faces? Sadly, no-one else can help us find them either. As the disease progresses, more and more pieces of the puzzle inside our head disappear, and the empty space grows.
I’ve often called my personal story of living with dementia My Unseen Disappearing World, because as our ability to recall decreases, our world gets smaller and smaller; it shrinks or disappears. Then for many the isolation increases… for me, mostly thanks to blogging and advocating, my world, even though I’m often only in the virtual one, is expanding, which helps me to manage the emotional toll of the growing space in side my head.