The Weirdness of Dementia (and Life)

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Over the past two years, my East Facet Institute colleague Dr. Susan Massad and I’ve had the glory of main “The Pleasure of Dementia” workshops across the nation, together with one within the San Francisco/Bay Space that came about earlier this yr. We have been joined by about 60 individuals, plenty of whom reside with dementia. One among them, a former school professor whose analysis was nonetheless latest, started sharing the experiences and feelings she was going by way of, and ended by saying, “What can I say, it’s simply bizarre.”

I used to be extremely moved by her telling us this – each as a result of it’s not a straightforward factor to say – and since she’s proper. Dementia is bizarre – in probably the most bizarre sense of that phrase. Issues begin to develop into barely, after which not so barely, after which vastly off-kilter – not just for the individual residing with dementia however for everybody of their lives. This may go away us upset, afraid and unsure. And when confronted with uncertainty, it’s tempting to try to management, fairly than embrace, the state of affairs. Imagine me, I’m not saying this critically. Once I was with my mother – who has since handed away – whereas she was residing with late-stage dementia, I might really feel the necessity to management in each bone in my physique. However thankfully for her, and everybody else round us, I might additionally recognize and even benefit from the weirdness of the state of affairs.

For instance, I used to be genuinely shaken once I realized that, regardless of listening to over and over all through my life that an individual with dementia is “not there,” my mother actually was there, and I had to determine methods to be with the her she was turning into. Effectively-meaning pals would usually ask, “Does she know you?” and my trustworthy response was, “I don’t know and I actually don’t care. What issues to me is that I do know her and I wish to be as giving as doable.”

However in an effort to be nearer to dementia, we now have to do bizarre issues – we now have to babble, we now have to play and fake, we now have to embrace the fantastical, all of which we most adults are actually ill-equipped to do. And I perceive – it’s laborious being bizarre. Which is why I imagine one thing new is required within the dementia enviornment and, I’d argue, within the extremely unsure world wherein we live, and I feel I’ve one thing to supply. I perceive why individuals could be afraid of or delay by being bizarre, however I’ve a “answer” – fairly than being bizarre, attempt performing bizarre.

With out going into loads of element, efficiency is the phrase that’s given to the socially sanctioned exercise of being who you might be and who you aren’t after early childhood (the place infants and younger youngsters develop exactly as a result of they’re supported to play, fake and imitate the older children and adults round them. Whether or not we prefer it or not, dementia calls for a brand new efficiency from all of us as a result of “what we all know methods to do” doesn’t work, and as a rule leaves us lonely and remoted from even these closest to us. What I really like about performing is that we by no means carry out alone, we carry out with others, we create—to make use of the theatrical time period—an ensemble. And it’s on this ensemble that we’re supported to attempt new issues in our lives and, I’d argue, to develop with, fairly than be paralyzed by, the emotional journey (curler coaster) that’s the dementia expertise.

Which is why I really feel keen about serving to everybody who experiences the weirdness of dementia (or the rest of their lives) as shameful to discover ways to embrace our “otherness,” our distinction, our limitations in ways in which permit us to maneuver nearer to, and create extra intimacy with, the individuals in our lives. As a result of none of us – irrespective of our life circumstance – must be locked into the roles and expectations with which we’re all saddled. We will endlessly create and develop neighborhood, and ourselves, concurrently.

I lately learn an exquisite article, “Out of Time: Un-knowing the self”, written by Sallie Tisdale for The Atlantic Journal, a quick part of which I’d wish to share with you:

‘Time adjustments when the mind fails, turning into unusual and plastic…Dementia offers us a possibility to query how time and language and notion work. It strikes me that each inventive and spiritual observe have these qualities: new methods to make use of phrases, repetition, pauses and silences, gestures and pictures – expressions of the expansive inside longing to be heard…A chance to query how time and language and notion work.”

What a outstanding present, and one I used to be given whereas with my mother in her final months. I used to be mesmerized by the swish motion her palms would make – seemingly with a lifetime of their very own – and touched by this girl, who hardly ever spoke except spoken to, babbling with beautiful animation to whoever
was round.

Once I thanked Carolyn Halpin-Healy for sending me this text, she responded by saying “There actually is a lot poetry in dementia, if we might solely assume much less by way of loss.” And, I’d add, tragedy. Does this imply we received’t really feel a myriad of feelings as we undergo this journey? No. But when we will embrace the weirdness, the poetry, the creativity, the journey could be far richer and infinitely extra human.





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