The Homecare Diaries: Surreal Life

It looks like my mother is going to have to move in to the nursing home. We just can’t do what needs to be done any more. Every day we are faced with our own ineptitude and clumsiness and ignorance. I can read to her from Tim O’Brien and make her cry, I can tell stupid jokes and make her laugh. But I can’t adjust medications and do physical therapy and take care of her around the clock.

So I spend my days now trying to find cards I don’t recognize with information I don’t know so that people I’ve never seen can fill out forms I know nothing about … all to get my mother into a facility where none of us wants her to be in the first place.

It’s Kafla-esque. Kafka would actually be amused by this situation. He couldn’t read The Hunger Artist to his friends without cracking up. Meanwhile I feel like my entire nervous system is being peeled one layer at a time like an onion and someone seems to have attached lead weights to all my joints. I can’t even read at night any more: my eyelids secrete glue. The centrifuge of illness and misery sends the separate parts of my life flying in all directions. Some neurologist I’ve never met changes my mother’s medication and sends her into a tail-spin and he acts irritated when I call him up in a panic, after office hours. He’s not the doctor of record. “But you’re the neurologist,” I say, and I’m thinking, they haven’t passed tort reform yet, you miserable prick.

Meanwhile, my mother’s head floats above the dining room table, the spitting image of a younger self, and we discuss the nature of confidence and the rules of grammar and the failures of the president (“I have only one question for him: When are you going to end the war?”) and she instructs me in the best way to dredge the scallops (seasoned bread crumbs and white corn meal after a quick dip in the milk and egg mix). Then she stands up and her legs won’t hold her and all her features pull down in pain and she’s unrecognizable and I can’t adjust.

I’m changing my mother’s diaper and she has no modesty left and takes it in good humor, and she has no idea of the shock wave it sends through my nervous system, like gunshot wound, the sonic boom pulverizing the soft tissue ahead of the bullet. Why is this so disturbing? It should feel natural, tending to the flesh of a parent, as she tended to mine and I tended to my own children and they will tend to me. And yet every fiber of every nerve screams in protest.

But even that is changing. The most surreal part of the experience is that I’m actually getting used to it. I woke up this morning early (Annie had to catch a 6:30 boat). When I I came downstairs Mom was on the floor by the bed. She had slipped down. Her robe and pajamas were wet; so was the bedding. After a split second flinch response and a sort of snap clenching, of the spirit (Time to wake all the way up, buddy!), I performed some internal recalibration and saw the scene as a set of logistical problems to be solved: get her off the floor, seated on the walker, into the bathroom; then change the bed, get the laundry in, find new pajamas, get her off the toilet, get her dressed, cheer her up, tuck her in … and make coffee for us. Annie’s alarm was set for five, and she was just getting up when I finished. So I’ve crossed a strange new rubicon now, into a twilight world where finding my Mom on the floor and fixing the nighttime mess just feels like another part of my day, a mundane routine like walking the dog or brushing my teeth: the new normal.

Still, bizarre things keep happening. After days of being unable to stand, Mom woke up in the middle of the night last week, certain she was all alone in the grand foyer of the Metropolitan Museum of Art, in our old neighborhood in Manhattan. She made her way to the top of the grand stairway and then decided she had to get outside to hail a cab. She walked across the whole downstairs of my little house, looking for a way out of the museum – I know this because I left my sneakers near the front door and she was wearing them when I found her: giant reeboks on her tiny feet. She almost got the basement door open (that actual narrow stairway would have killed her) before she woke up enough to realize that she was at home. How did she do that? The basement door is hard for healthy young people to open. And why aren’t we figuring out some way to harness the over-riding power of that dream in her waking life?

I don’t know. No one knows. She can’t taste food but she loves to eat, she can’t move but she can tour the house in a dream. The people who know how to help her don’t seem overly interested and the people who care the most are helpless. Life is upside down but I’m getting used to walking on the ceiling, skirting the light fixtures and high- stepping the door jambs.

I haven’t been arrested for no reason, as Kafka described in The Trial. I haven’t been turned into an enormous roach and neither has my Mom. I’m not spending my days trying to penetrate the faceless bureaucracy of The Castle—though it all sounds a little too familiar. I’m not living in Kafka’s world.

But I’m starting to understand it.