I have written about this before, but one of the most heartbreaking thing about when a loved one has cognitive impairment is not only the loss of identity, but to see them struggle trying to preserve their dignity in spite of it.
On occasion, you see the glimmer of who they were, and what they still retain. But then a small, simple, everyday thing becomes lost to them, and they know that they no longer remember and have to swallow their pride and have to ask for help in a small innocuous task. You are torn between doing it or showing them, but knowing that they will probably forget.
It’s heartbreaking. It’s frustrating. You want to help, you want to make their lives easier, but you also want to respect and honour their autonomy. They aren’t regressing, they aren’t becoming demented. They are literally losing themselves. They are losing that very thing who they are, of what they are.
You become utterly powerless. There is absolutely nothing you can do as the mind just simply ceases.
I am an ABD PhD candidate, finishing up my thesis and, along with my Mum (Mum or Anya), taking care of my father (Apa), who is declining cognitively, due to PART (primary age related tauopathy), a type of dementia.
This is his journey.
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