The ‘space’ inside our head…

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…

A stranger in my skin

It started like this… my dear husband said; ‘I didn’t know you had any black jeans?’ I replied, ‘nor did I, until I found them in my wardrobe!’ We laughed out loud, as I tried to recall when and where I had purchased them. And then I cried. They were obviously purchased in the last 18 months, as…

Another poem…

My unseen disappearing world By Kate Swaffer © 2012   Days alone with dementia Laughter and love Tragedy and sadness Memory loss Playing cards alone Grief, tears, shock Humiliation and stigma Dancing Daring Keeping secrets Engagement and inspiration Hysterical and life changing Moments lost in time   Note: I somehow lost a whole blog today,…

Drowning, paddling harder and staying afloat

Many days it feels like I am drowning from the symptoms of dementia, and last night my husband and I were talking about the changes that are taking place again, and the fear we both feel when I might not be able to keep myself afloat. It is not the most comfortable emotional journey, constantly feeling like…

I’m over The Adelaide Fringe!

Well, it is done and dusted as they say, My Unseen Disappearing World event is over. A job well done some have said, small goals achieved, public awareness raised, stigma reduced a little, service providers thinking differently, at least for a moment or two, friends and family standing by watching, worrying, supporting and loving me all…

But you don’t look sick…

The best way to become acquainted with a subject is to write a book about it. (Benjamin Disraeli) My communicating now is definitely best when I have had the time to write my thoughts down first. Trying to get the words out verbally in exactly the way I mean for them to be said and…

The burden of disbelief

With not being believed or with being doubted, comes an enormous burden, and I call it the burden of disbelief. For a younger person to have been told they have dementia, they must have passed (!) all sorts of medical markers. There are many tests, and they are invasive, time-consuming, expensive, humiliating, and tedious and more…