[As I prepare for the talk Ming and I will deliver at TEDx in Bunbury, I wrestle with challenge of being concise when I could talk forever about our experience with Dementia: Anthony’s unawareness that he has Dementia; Ming’s transition from anger to acceptance; and my own attempts to find and create meaning in our interactions. I want this 15 minutes to somehow make a difference in the way people in general respond to people with Dementia. Once again, the following is a draft of a chapter for the book, Dementia Dialogues and any feedback appreciated.]
7. “When do you get your soul back again?”
It was a few months ago and I was already attuned to our cross-purpose-ish conversations, where, for example, Anthony would mention a tractor and I would counter his tractor-anxiety with an exclamation about how sweet potato was in season again.
So, as I switched the television station from Dr Phil to the ABC news, Anthony did the exact same thing with our conversation:
Anthony: When do you get your soul back again?
Me: WHAAAAT?
Anthony: Your soul.
ME: But I haven’t lost my soul, Ants!
Anthony: That’s good.
Anthony is the least spiritual person I have ever known so his mention of my soul was disconcerting as I’m pretty sure I have a reasonably healthy one. Nevertheless it made me realise that inside the mind of a person with Dementia are all sorts of references to all sorts of triggers, both past and present. His mention of soul may have been a bit like me telling him that the power was out at the nursing home one day, i.e. there was no electricity. Hours later, we had this conversation:
Me: Are you angry with me, Ants?
Anthony: Of course not.
Me: Then why do you look so sad?”
Anthony: My power is out.
So maybe Anthony’s casual reference to my soul, as if it were something I’d temporarily misplaced, like a bangle or a scarf (which I lose all the time), was just him using one word, ‘soul’ for another, more tangible thing? After all, I don’t even know what a soul is!
Nevertheless, that soul conversation still resonates, still makes me wonder, and still compels me to keep on trying to continue these dialogues. Sometimes, when Ants is too sleepy, or confused, to answer my ‘yes or no’ questions, and he tries to tell me something that I can’t understand, I just say this:
Me: It’s okay, Ants. I can read your mind!
jmgoyder 
You are so sensitive but at the same time so sensible.
Anything I say may sound stupid, but honestly, I feel like Anthony’s comments are brilliant and still very much connected to what he is trying to say in, and about, life.
so great, you have just the right approach. best of luck on your talk )
Your talk and book will be best sellers!
I hope that you get exactly the right words for your talk and that people listen carefully.
We only have 15 minutes so will have to either talk fast or say less!
Brevity is the soul of wit, they say.
Yeah talk about not having your soul would stay with you, well it would stay with me but at least some of the things he says must bring a smile to your heart
So excited to hear about both the book and the TED talk. These are conversations we need to be having. And I love how you reassure Ants with your mindreading. Biggest hugs and love to you, Nicole xx
Thanks for the beautiful comment Nicole. You gave me such a buzz!
It always amazes me over the years, how you can turn the harder moments into wonderful, thoughtful comments. You’ve got it.
That means a lot – thank you so so much!
I’m late in replying… Anyway my thoughts. You mentioned switching shows from Dr. Phil. I was just wondering if there had been anything at all said on that show to trigger his question about ‘the soul’…
If not, I was thinking that sometimes our minds wander as I’m sure Anthony’s does, and something just pops into our thinking. (It actually just happened to me.. totally unrelated to your post, but it prompted me)
I think sometimes these issues that pop into our mind, can be from year before… maybe many years. But you maybe can’t always know from ‘where they come’.
For sure you know Anthony well. It is evident in the relationship and conversations you have and can draw from him… and he responds so well to you.
I only offer the comment as a thought. My mother couldn’t communicate at all at the end, but prior to losing her ability totally, and she would say something that came from nowhere, it was a challenge to respond hoping I said the right thing. I think sometimes if I didn’t, I would see a little frown on her brow. It is hard ‘reading’ your loved one’s reactions sometimes. We can only try.
Probably didn’t explain what I’m trying to, very well…..Diane
Oh thank you Diane – so much for this!