I’ve been following this blog Dementia, Caregiving and Life in General written by the daughter of a woman with Alzheimer’s Disease for a few years now, and her blog today has started me thinking again about forgetfulness.
The last line of her blog, Forgotten, in a manner says:
“I think I can accept being forgotten. It’s the forgetting I’d rather not have.”
As a person living with a dementia, I’m not sure which is worse, not remembering, or being forgotten. I certainly know it is frustrating, and also often quite annoying forgetting things.
Forgetting is sometimes deeply painful as well, as I discovered once again in Milan earlier this year.
But, I can also say, the first time it was obvious to my husband I had forgotten his name (not yet who he is), it looked like I had punched or kicked him in the stomach, really, really hard!
Often these days, I have to fudge knowing people’s names, sometimes even knowing who they are at all. Phone calls are especially challenging, as most often, people just say ‘hi’, and expect you to recognise their voice. Or ‘hi, it’s Jenny’, and then I’m expected to know which Jenny.
The jury is still out on this one for me – I have a sneaking suspicion it is far worse being forgotten, than forgetting, especially once the dementia has progressed and there is less or no insight…
Athazagoraphobia is “the fear of being forgotten or ignored and fear of forgetting. Athazagoraphobia is considered to be a specific phobia. Athazagoraphobia is a surprisingly common phobia.”
However, for the person with dementia, or our family or care partners, the fear of forgetting, or of being forgotten, is probably not a phobia at all, but the anticipatory grief of dementia.