What do those late stages feel like? What is it like to lose oneself and still live? Could there be some essential kernel of selfhood that survives until the end?
And Block concludes,
Mid- to late-stage sufferers, lost in their aphasia, can’t explain it to us.
The reason for my disappointment is that, yes, people in mid to late stages of Alzheimer’s and related dementias (ADRD) can and do explain how they feel and the sense of loss the comes with living with ADRD. They can and do express the “kernel of selfhood that survives,” even as they are “lost in their aphasia.”
How does this happen? When does this happen? Where does this happen?
During storytelling workshops.
Take for example, Painted Lady, a story told by people with ADRD. In it you’ll find answers to the above questions, as well as answers to questions you might not have even thought to ask.
Isn’t it time we include fiction BY people with ADRD in the sub-genre of ADRD fiction literature? Let’s stop all this nonsense about “they can’t explain it to us,” and start listening. Really listening.