3.0 Hello Dementia, I See you are here to stay


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There is so much about Parkinson’s & dementia that I wasn’t told. And every day I learn something new. I hope I can continue to share my knowledge even when I no longer need it.

Before her memory begun to fade, mum agreed to have me document our time together. She would say; “it’s not death my child, it’s a new life chapter”.

Dementia, like many mental illnesses, is such a profoundly isolating disease. When the memory starts to fade; friends, family and loved ones start to withdraw. I personally think it’s due to the fact that dementia is misconstrued as a mental illness or an ageing condition and therefore ignored. But my point is that mental illness isn’t spoken about enough. It is an invisible disability and what we cannot see, we do not understand. And often what we do not understand, we avoid.

Imagine having your memory wiped clean. No traces of faces you once loved or places you visited, major life milestones – gone. We constantly talk about living in the moment and being present but never really understanding what that actually means.

Well I guess mum has one more lesson for me to learn.

She no longer remembers who I am today or what I once meant to her. Nor does she have the capacity to help me navigate this thing called life. But as her carer, her daughter and fellow human. How our roles have changed as I am now her guardian. I know have to make decisions for her.

This is not how life was meant to be. But I turn up, I am present so I don’t miss the moment she recognises me. The moment she remembers that I am one of the loves of her life.

As a leader in my personal and professional life, she is teaching me to be present because signs are everywhere. Not just in the spoken or written word.

My evolving life lessons since our Parkinson’s & dementia journey have thus far been:

(in no particular order)

  • Create the meaning and relevance to each chapter, memory and moment in life. Time is an illusion that many can’t understand, so they overstand. Until you can understand time, will the present hold more meaning to “the now”.
  • Hardships can break you or drive you. We always have options and choices, regardless of the situation. ALWAYS.
  • No matter how grim things may seem, you need to take a step. Just because it hurts, doesn’t mean you’re going to die. Alter the environment.
  • There is always room for compassion, loyalty and humanity. A little support makes a big difference.
  • Whatever you seek from others, give it to yourself first. Be it a compliment, validation or recognition whatever it maybe. Because its only when it comes from you that you actually believe it.

You can stay dementia, we may not want you around and you may have my mother, but I believe in her love hence the reason I am still standing.


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