Dementia Narratives
Reconciling an Uncertain Future
Facing the inevitable cognitive decline
Mention of an eye appointment to get his favourite glasses fixed this afternoon spurred a paranoia-infused anxiety that quickly escalated into a stalemate. It’s out of character for him.
Although his eyesight is compromised and a constant source of stress, he normally manages the day to day reality with good humour and grace. When questioned though, especially by doctors, the stress ignites and overwhelms him.
We are sitting at the kitchen table as I try to navigate his slurried string of nonsensical words. We’ve known each other long enough that I think I can gather the gist of what he’s trying to explain, but the truth is I have no idea what we are talking about.
The facts that could resolve both our conversation and his anxiety are buried in the recesses of his dementia, and the only thing that’s clear is the expression of fear. The implicit loss of control.
I remind myself that the art of negotiating when you have no idea what you are talking about is to connect with emotions, rather than logic.
In the context of dementia, effective communication is predicated on empathy; understanding the perceived threats to personal identity and independence.
Listening means having the patience to follow circuitous and looping conversations that don’t always converge on the intended point or a satisfactory conclusion.
I listen quietly.
Slowly, I begin to understand. He is reconciling the deeper meaning of the challenges that lie ahead.
In contemplating an eye appointment, he morphed from a purely happy, early-rising, smiling man into a defensive incomprehensible stalwart that is ready to “be less argumentative and let her go do what she wants”.
He is mad that he can’t drive anymore, and that she is doing everything while he is struggling to be “useful”. He accuses her of wanting everything now, and resents her for it because he can’t provide.
As his eyesight declines, he feels less and less useful.
After venting and looping and not going to the appointment — which we find out was apparently cancelled last week anyway — he grounded himself again with remarkable clarity, talking about how much they “both enjoyed their oldest son, their trips, their fun.” How he respected what she helped him do over the course of their lives. That she is smart. Beautiful.
But, not missed.
“If she needs to do something different then we should let her go,” he says.
“When you’ve been together for so long, maybe it’s just the same old thing. Maybe I need to let go of what I appreciate in life, what I like to do. I am an old man now. We look to remind ourselves of who we are, but know that we are passed that now.”
Dementia Narratives is a new project that’s evolving as we cheerlead Dad through dementia. It explores the perceptions and realities of dementia, the science of our hearts and minds, and the social dynamics of caregiving. It also provides a platform to support others interested in writing about their experiences with dementia. ❤️ Contributors welcome ❤️
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