In her book “The Blackridge House”, Julia Martin tells the story of trying to find the house in which her mother grew up. Her mother lives with neuro-cognitive impairment. She has wonderful moments of remembering. In one of these remembering moments, Julia says to her: “You know, even if your memory gets mixed up, your mind is still as articulate as ever”.
This is so beautiful. We all get our memories muddled, we get names and places wrong and forget details. If I think back on my last trip to Melbourne (where I am at the moment), a lot of it is blurred. Every now and then I remember a detailed event. I do believe that there is simply too much information. We read more, travel more, and have more access to information, and things are faster and coming at us with the speed of light.
A few nights ago, I had the wonderful privilege of having dinner in Melbourne with my guru, Dr Al Power. As we arrived at the restaurant, my jet lag kicked in. I suddenly became fuzzy, I could for the life of me not remember the name of the book I wanted to tell him about, and had to think long and hard what the name of his daughter (whom I know well) was. Added to that was the noise of the restaurant, and I had to get up and go for a walk outside. When I came back, I told Al about this. He said that he thinks this kind of jet lag gives one an impression of the world of someone living with dementia. The thought hit me between the eyes – YES! THIS must be what it feels like! And it scared the living daylights out of me…I could not articulate what I wanted to say, the thoughts just literally disappeared. I felt fuzzy, could not focus, and felt like a complete codwoddle not being able to remember the name of his daughter. I did not know how to explain myself. Only someone like Al who has experienced jet lag quite often, could identify with the way I was feeling. And, having spent his working career working with people living with dementia, he could put the two together.
Being articulate of mind is different from reproducing linear, factual storylines. For me, it means that I can give expression to thoughts, feelings, and insights that do not necessarily have to be in order or sequence of events. It does not have to be coherent in telling a story or relaying facts about events. We use the expression “to speak one’s mind” in the context of expressing an opinion. It goes beyond that. So often, people living with dementia will say things that do not ‘make sense’ to us, with the result that we mostly ignore what they say. Or we correct them, putting their words in a sequence that makes sense to us. This sometimes leads to arguments or disagreements.
Just last night someone told me about his mother who now needs 24/7 care, which is provided between him and his four siblings. (The wonder of an Italian family!).
Even though they never leave their mother alone for long periods of time, she accuses them of neglecting her, treating her like a dog and not caring about her at all. This hurts, and of course, they try to set the record straight. An expression of the mind of the person living with dementia is often not contextual, yet it uses the context at hand. I think what his mother is trying to tell them is how she feels, using their being with her as the context of expressing her hurt and anger with her condition. She feels cheated, deserted, confused, and angry. Her only way of expressing it is to use the tools at hand. It is not for us to argue with this…
We need to learn to listen with our hearts, and to be the ethnographer, finding the source of the communication. This is not happening on the surface, it is delved from deep within the essence reality of the mind. It is raw, it sometimes escapes unfiltered and unedited. The trigger is pulled before aiming, it hits like buckshot. And yes, it hurts. There is nothing wrong with feeling hurt, we are human. But we should also start to learn to listen to the mind, and not get caught in semantics or over-interpreting facts, acknowledging, validating.
At a later point, Julia’s mother says when asked a question: “Angaas. There are vast lakes of unknowing in my mind”. Again I nd this sentence so poignant. She does not say that there is nothing or vast areas of nothingness. There are lakes, deep dark, brooding lakes, at times. Or crystal clear sparkling lakes, at times. But there is something, vast lakes. Lakes of unknowing, as opposed to lakes of nothingness. It must be frightening at times to go to this lake, waiting for the Loch Ness monster to appear…or perhaps this lake could be a source of calm, of inspiration, of reflection. Perhaps the mirror image on the lake is no longer what we thought it would be, and is more like a mirage, an image of dreams and mind. Certainly, the narcissistic reflection is now distorted, creating new and unknown reflections. It makes it non the less real. This is what it is. And we should endeavour to explore this lake with the person living with dementia, sitting quietly, Being there. Every time we react it is like throwing stones across the crystal clear surface, we disturb the equilibrium, making ripples and waves.
This place, this lake, is now a place of Being. Take the time, pull up your deckchair, and rest your eyes and your mind in the unknowing. Start to unload, unwind, unpack, and undo. Maybe, just maybe, you will find a treasure.