Being with someone who has dementia is a lot like being with someone on LSD; they are in a somewhat different reality. It seems to work best to get excited for them each “new” realization, when they tell you again what they just said 20 minutes ago. It’s certainly further developing my own capacities for patience.
The invitation appears to be to just roll with being 100% in the present moment. No fact checking, no “you just said that”, no “I just saw you yesterday, remember?” and also certainly no arguing, criticism, or telling them they can’t do things, as it invokes a regression (which we are trying to teach other family members.) Better to gently re-direct.
The memories cycle out and in, the synapses fire oddly and make very strange connections, filling in the blanks with extraordinary leaps. It’s a surreal surrender to what is real on a moment to moment basis, which can change in a second. I’m glad all those years in alternative art scenes like Burning Man have prepared me to be able to be present, upbeat, and without complication, for someone in a different reality induced by brain chemistry.
It is also an experience that stirs deep grief, and uncertainty. We truly can’t know what all will unfold, and for how long we have. The moments of cognitive clarity become like gold, something we all get excited about, sharing “she’s having a good day today” like it’s top headlines.
Unlike LSD, the person never comes back. Our hope is to slow down the process with better rest, nutrition, and care, as well as contact and stimulation, and lots of love.
Just being in the mystery, one that is unfathomable until someone close loses their way inside their own mind. It’s tough. My heart resonates with compassion for everyone else who has been through this.
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