Dementia is not a disease, it is not a diagnosis and there is no one cure. Hard words to say perhaps but it is the unvarnished truth. I believe that thinking of it this this way prevents, or at least makes it harder to see the person beyond.
Dementia is more accurately a description of a collection of symptoms associated with various neuro-degenerative conditions. As someone who lived through a parent’s journey through Alzheimer’s when he was diagnosed I remember feeling shocked, devastated and my thoughts rushed to the probable future where he not only didn’t know my name, but didn’t know who I was or that I even existed. The excruciating pain of that expected moment lived with me for years and I now believe that, at that time, I missed the full experience of who he was.
The truth was that diagnosis merely gave us a name for symptoms he was already experiencing and in reality nothing much changed very quickly. I do know that some people experience a much faster journey but I guess that I compare it to my Mum’s experience. She laid down for a nap, had a stroke and woke to a reality that left her profoundly disabled and without speech for the rest of her life, compared to this Dad’s journey was much slower and should have been easier to handle, but it wasn’t. It was merely different. There was so much I didn’t know, and everything I did know distressed and panicked me. I now believe that those years should have been spent nurturing the ‘now’ with my Dad, giving him experiences and helping him experience life, not stressing about the future and ‘maintaining’ him. I was catapulted into survival mode and missed all the things he still was. He was social, loved children, loved laughter, loved getting out of the house and much, much more. Eventually I came to see him past the diagnosis again and found ways to connect and engage with him, but, how different would it have been if I had been able to see this earlier?
We need to change the narrative and see the individual and not the diagnosis.
Dementia is a word that describes many possible journeys from many various conditions and diseases, we cannot let it remain a barrier to experiencing the individual any longer. There is so much we miss ourselves and we are not serving those who have it.
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