It was a day of interesting opportunities and challenges having a film crew in my house (sometime earlier this or last year – I can’t remember as I started writing this blog the day after). The denial bubble we prefer to live in disappeared that day, as we had to focus on what it is really like living with, or alongside someone with dementia, which is not always a comfortable place to be.
Anyway, as I started to type this blog (just after the day I refer to above), I was concerned that my ability to type might disappear, as my handwriting has already started to do…
What will become of my ‘voice’ then, how will I find it? My writing is my strongest voice.
My speaking is also becoming more difficult, especially the ability to find the words and meanings inside my head. Find those words, currently floating inside my head like helium balloons, almost in the ether, words that I once easily used my inner voice to find, is changing. What will happen when I can no longer speak… What then?
As the Honourable Kelly Vincent said recently (I have paraphrased her), and which I am now needing to remind myself daily;
“No-one is voiceless; others have simply not learned to listen”.
During the Dignity Party’s first campaign day earlier this year, Kelly paraphrased everything a woman with severe speech disabilities said, of which I could not understand one word . Quite simply, I had not learnt to listen to someone living with advanced speech disabilities. One of our new DAI members has advanced PPA, and I feel and see her frustration as she struggles to speak, to find words, and is confronted with her own destiny. It is awesome to watch her wanting to ‘fight for her life’, but also gruelling and very personally challenging to see what is ahead.
A few months ago I also spent time with a woman living in an aged care facility with MS, who feels she has lost her voice. Not in the literal sense, as she can still speak, and I could understand her, but since she has been living in aged care, others speak over her, for her, or even about her, and most of the time, also in front of her.
She listened to my presentation about empowering others with dementia to find their voice, and to reclaim their pre diagnosis lives as much as possible, even those living in care facilities. She heard me talk about the human rights issues of younger people having no option of anything other than aged care when they need residential care, and how we would never admit children into an adult or geriatric ward in a hospital. She cried and then we both cried together. We talked about her sons, who feel the distress of their mother living in a home for ‘old people’, and I then shared my fears as a mother with young adult sons. It was, and is a distressing thought.
She asked me how I thought she could reclaim her voice and I suggested a sign or placard, that she could hold up to others: “Speak to me!”
I used that as a sign for my neurologist once, as after dementia, he had stopped talking to me, or even looking at me. It definitely worked!
And even as I finalise this blog, most of which has taken months to write, I continue to be concerned that my typing skills might disappear, as my hand writing and many others skills are fading… How will I find my voice then?
It’s too hard to think about for very long, so I’m heading back into my denial bubble for a few days!