I asked my mother why she raised me to be a “fixer.” She laughed. She knows what that means: to be efficient and competent at so many things…and the frustrations that come when all of that isn’t even close to being enough.
My husband didn’t laugh when I told him about our conversation. He just looked at me and said, “that ability has stood you in pretty good stead over the years and we’re both better off because of it.”
He’s right, but I can’t fix this…and if ever there was a list of somethings that I wanted to fix, well, this would probably be right up there near the top. I have grown to hate even the word that names the demon: dementia.
It is evil and hateful and cruel. It steals life both past and present from patient and loved ones before time of death. At times it feels almost alive as we watch the effects of it sweep away in a rage the memories and function and peace of mind in one we love. It is like being unwilling participants in a horror movie that you can’t leave or turn off and God alone knows the ending…and He’s not talking.
That last sentence isn’t quite true. God DOES know the ending…and He IS talking, but for today, at least, He’s not talking about the ending–when it will come or how long it will take. That leaves us reeling from phone call to phone call and gives new meaning to “praying without ceasing” as I remind God of His promises and cling to all that I know about Him.
If God wasn’t an option, I might just lose my mind, as well. I cling to the gift of Him and cry out prayers even as I walk silently among the people around me, desperately walking out my faith even in my sleep these days. I wake in the night to check messages and find myself blogging and not publishing because it feels too real…and too raw to lay out where others can see and touch it.
I have to write it, though, and give voice to the struggle against it, share the every-moment bravery of those who fight it alongside loved ones who may no longer recognize them…and may even be frightened of them as they provide care.
Dementia affects much more than just the individual with the diagnosis. It is agonizing with and for those who are able to be on-site, feeling selfish when you cannot be there to help in any physical way possible…and dreading the time when it will be your turn.