“People pathologize dementia – they talk about how the person ‘dies’ before they are actually dead. And in some ways that is true…But this different person, the person they become, is still woven together with the essence of who they were.” Laury Jeanneret, What Remains When Dementia Makes Everything Else Fades
I would even go so far as to say that my loved one is not a “different person,” though her disease sometimes makes her behave in different and (to put it mildly) challenging ways. She is not dead, though she may be sick and dying and doing it in ways that are uncomfortable, heartbreaking, and even frustrating for both her and I.
But that is all just an outfit, another layer above the skin and bones we live in that are not us but a vessel. There is a part of each of us that is eternal and even dementia cannot take that away. Dementia may be able to assault earthly brain and body functions, but it cannot touch that golden thread of spirit that makes us who we are.
It makes me sad when I hear people say their loved one is “gone” or “already dead” at the same time as I know from my own experience how hard it is to find that person we remember as time progresses and they step further and further across some liminal threshhold where we cannot follow. Some days I can draw her back out, but not always and I know there may come a time when I can’t at all.
But essence, that spark that makes people who they are, I do believe that somewhere beneath behaviors and withdrawals wrapped up in the existence of tau proteins and plaque and tangles, that spark is still there and it remembers…even if it’s hard to find some days.
#endFTD #endAlz #caregiveradvocacy #dementiaeducation