In Sarah's words: dementia awareness advocate to appear on national TV

The award winning ABC television series breaks down stereotypes and answers questions people are afraid to ask.

Sarah's early onset dementia diagnosis at age 56 turned her life upside down. She says that "every day there is a sense of a little bit more lost in your life".

The 67-year-old NSW North Coast resident is living with a mixed form of dementia caused by hydrocephalus and a vascular component. She is passionate about community education.

We spoke to Sarah, from Port Macquarie, about the You Can't Ask That episode, which explores dementia, and as the interview progressed, she became lost in the conversation. She later provided a reflection, which is reproduced in part, below.

"Today, my friend (I hope she doesn't mind me calling her that) Lisa Tisdell, from the Port News, rang me to get some info for a piece she wants to do for the Port News, regarding the ABC's program You Can't Ask That on dementia which is being featured this Wednesday night.

The conversation seemed to start out fairly normally, then, after a while, I realised I had no memory at all of what I was saying, even though our conversation was contemporaneous. I hesitated, tried to remember, but couldn't.

I realised I was just lost in our conversation. I had no idea what I was trying to say. I tried to explain my dilemma, of having realised, I was "mixed up" and Lisa, as ever gracious, said "it was fine and don't worry".

Fortunately she understands, I just wish I did. I wish I understood why my mind now seems to splinter, becoming painful, emotional shards of insight, self-reflection and loss.

Memory is such a precious thing. I remember the tears welling when the ABC interviewer asked what was thing that I most wanted to not forget? I said "my mum, my dad and my brother Al".

And so it was, I realised, I was completely adrift in our conversation, today. No longer within sight of the shore, of trying to articulate an answer, and so I, started to cry. This time, I was simply overwhelmed by what I am losing.

The ability to be able to hold just a simple conversation, that makes sense, has flow. A beginning, a middle and an end.

The seven stages of dementia is often talked about and I would have said that, even after five years of diagnosis, I was just a three, were it not for the almost total absence of short term memory - this is the "spanner in that theory" so I must settle, I suppose, for a three plus.

It's said "you never really appreciate something until you have lost it" and so it is true of memory.

IN OTHER NEWS:

How desperate is that we, who are "cognitively" impaired, try to cling to the constructs of our conversations with others.

We, those "impaired", will often find ourselves isolating, not wanting to go out, to go to places, go to activities, just be with others, because we don't want our friends and family to become aware of this loss.

Instead we keep to ourselves. To fret about it, cry about it, almost becoming insane with the never ending introspection and inward examination of these losses, that we can not stop, we can not fix.

I am rambling, I know, but it was such a shock to me, what happened today. And so it will happen again and again and again.

So I have held my breath for a while today, just trying to navigate that narrow isthmus of my understanding, that my brain is changing (and not in a good way) and there is not a thing I can do about it.

You Can't Ask That episode eight, which airs at 9pm on Wednesday, July 13 on ABC TV and iView, explores dementia through the eyes of people living with dementia.