No responsibilities, no work hours, no demands – or at least demands as you might see them.
But it is. That horse I cannot make drink, is this abysmal child in my head.
“What would you miss or fear most?” I was asked. I thought it meant losing the ability to speak. I had no idea of how FTD would affect my body: no stability to walk; swallowing, walking, dancing, climb into bed without ending in stuck in a pile of bedding, nearly choking. Speaking of choking – the night cough that can rattle me awake, unsure where I am, looking for a tidy place to expectorate. And the next day, there is no sign of it. But it takes 2 days to get energy to get out of bed.
The child within keeps me from the computer, to speaking on the phone, to get into the tub, to brush my teeth … Same child will prevent me from recognizing that I need to urinate, until, while sobbing, I do, in my now revered Depends.
Shame, frustration have kept me from you. Those ‘sticky’ dreams I’ve had for several years rob my dreams. I hear them calling me, time to move, to pack — and then I cannot find them, not awake nor asleep. My FTD friends, I so wish we has someone to cuddle up with us as say, as they brush my forehead, run their fingers through my hair, to say “It will be all aright.” “We are getting you ready for a place of peace.”
My prayer tonight is for those who only want to die in the arms of those they love. And it will be forever.
Papa, do you hear us?? We are lonely and very afraid. Love, Vicki