It's hard to sleep the night before we drive up to talk to Mark and his mom (Toni's primary caregivers for the past seven years) about taking Toni of the feeding tube. She's got one in her nose now--they do that--sends nutrients to the belly, I guess. Because she keeps failing her swallow test, which would mean that instead of eating she'd be aspirating on any food or water she tried to consume, the next step is to give her a GI tube, which would be a surgically placed pouch in her belly that they would feed her through. Of course, this carries with it its own battery of risks--because she's a diabetic she is prone to slow healing, because she is so weak she is prone to infection, because she is so weak her quality of life is nil anyway, so why force her to live for years without tasting anything, without speaking much, without engaging with the world that from what I hear she was fiercely engaged before brain cancer.
So "what are you doing today?" people ask. I say, "Walking the dogs, doing the laundry, taking Toni of the feeding tubes." Though perhaps we'll keep her on them while Justin is out of town, so that he can be here if she dies quickly (what will a 100 lb. 5 foot woman do without nutrients being pumped into her?). Then at least Mark won't have to be totally alone. Then at least he'll be able to call about arrangements. Then at least there will be hugs.
What does one wear to a meeting like this? What does one do to keep from going over the edge with grief and confusion and sorrow?
My mom will be there--the sometimes teary but usually professional mediator of pain--the queen of pulling up boot straps and carrying on with business. This kind of stuff has been her life's work for years; she's coming in handy now. If I had my druthers I'd have Pastor Brian there too, but that's my pastor, my church, my friend, my faith... So my mother will do just fine. Thank God she doesn't leave on her dream vacation with dad until Saturday.
I'll keep you all posted as much as possible. For now it's just this surreal experience of daily life with a death overlay. It makes me sound callous when I talk about it.