Mr. Reality

My father has been diagnosed with something called Multi Systems Atrophy. I wouldn't wish this on my worst enemy. He started showing signs at Lilly's graduation. He was walking oddly, hips thrust forward, as if his body had become a stranger to itself. "What's going on?" I asked, thinking he was having a stroke. "Don't make a scene." The ancient WASP magic of ignoring the inevitable and unpleasant. From that point it took 9 months to convince him to see a neurologist. Then another 5 for him to start taking the levodopa prescribed him. Then he stopped taking it on the sly, and fell. He was immobile for 6 weeks, incontinent, lying in my parents' hoarder den on the couch. Both my parents refusing to go to the doctor. Terrible. Finally, we convinced them to move to my house in town (it's empty, and clean) and to hire a nurse. He got better and started walking with a walker. But then, one bright Sunday afternoon in March, while my mother was in the kitchen, he decided he could manage without the walker and fell, breaking his left hip. Now he's bedridden. My mother resists every bit of care. Infantilizes him. We try to get him to eat on his own--she fights with us. We encourage him to use a bedpan, rather than going in his diaper--she tells him to go ahead and poop in his diaper. She's taken his phone. She goes through his texts. This is her heaven--complete control over my wayward, squirrelly, secretive father. What she's always wanted. She emotionally tortures the nurses--one or the other is always calling me, crying, threatening to quit: "I just can't take this any longer." And the hoarding continues unabated. Every day she shows up at the house with carloads of things she has brought. I clear the hallways. I cart food out when she's not looking. She calls me 5 or 7 times a day with small complaints--the cable, the nurse gave her 'attitude'. She fills up my voicemail. She looks over at me, and her eyes are amber, pupils small. She looks like a snake. There's no love in her. I think about mental illness, and I know this is really the ugly deal. I sit zazen and it gives me about three inches of mental space--enough to keep functioning, to keep making choices that keep them safe. How does it get to this? How does it get this bad and wrong? Man, watch who you marry. Think about what the End Game will be like, because it will be all theirs to play. It's Father's Day today. I'll go over this afternoon, relieve the nurses until the night nurse shows up. I'm a good nurse. I'm efficient and nice and a little tough. I hate having to take care of him like this, though, having to engage the clinical self with the family. It's so very, very sad. One of my younger colleagues said, casually, "I'd change my dad's diapers--no problem." But does she understand what that means? Seeing a parent this debilitated and vulnerable is the most grinding, soul-wrecking thing you can imagine. And it never ends. And it never improves. It will just get worse and worse. Despite the fact that he is very clearly dying, my parents refuse to talk about hospice, refuse to talk about end-of-life issues. I have to give them some props for this crazy optimism. At least they're committed to it. It's like the Christians refusing to renounce Christ and being eaten by lions for it. They're martyrs to their beliefs, but there's strength in their dedication to delusion. But then, of course, I am the one left holding the bag. I'm the one who gets to talk to Mr. Reality. As it always has been. It's hard to be critical of someone with a terminal disease. You just don't know what you'd do. And it's a waste of effort, which, at this point needs to be focused on making his last days as decent as we can. And there are big questions. Do I sue for guardianship? It's hard to prove someone incompetent, and, crazy as it seems, you have a right to make terrible choices. If I sue and fail, do I lose all influence and contact with my father? At least I have some ability to make a difference now. It's a terrible situation. That's my half-hour.