The Home Care Diaries, Part Two: Settling In

This is not a story anyone wants to hear. It violates the basic tenets of American optimism. It’s not Norman Rockwell picture; more like an Andrew Wyeth, with occasional torn fragments of Edvard Munch and Francis Bacon pasted over the canvas.

“How is it going?” everyone asks. And of course I say fine.

“Is it tough having your mother living in the house?” And I say no, of course not. Even to her.

Especially to her.

But the facts remain. That’s what facts do. There’s a mindless obstinacy about them. My mother is eighty-eight years old. She has a rapidly advancing case of Parkinson’s disease. She wants to go to the lovely assisted living place nearby, but she can’t really take care of herself, so I don’t see how that could happen. She works hard to improve her physical condition but the odds and the years are against her. Mortality mocks her optimism. Mortality mocks and diminishes everything. Its ruinous taint, the sheer poison of its proximity created every religion and philosophy on the planet. We forget that because we avoid it like the contaminating radioactive isotope that it is. Shunning death may be the one authentic human instinct beside the ability to suck. We come into life ready to take sustenance from the nipple, hardwired to travel forward ignoring the end of the trip. We build a culture based on youth, we shun the old, we spend a billion dollars on cosmetics and plastic surgery just to keep mortality at bay. I do it. I didn’t know I was doing it until my mother moved in and the awesome, appalling specter of mortality moved in with her.

So how does it feel to change your mother’s Depends undergarment? How does it feel to walk her from the bed to the bathroom, watching her legs tremble as she tries to find her balance? Well, first of all, it’s exhausting. It’s an illness itself, this new awareness of death looming everywhere, a leeching ailment like mononucleosis that saps the life out of your muscles and buries you in your bed. The fatigue is too complex to fight, and only certain parts of it can be solved by sleep. It’s spiritual as well as physical, emotional as well as mental. Part of it is about seeing someone you love so stricken, the penetrating unnaturalness (or so it seems, or so it feels) of your reversed positions, the upended role you have to play in the endgame of a parent’s life. In a way it’s like having a new baby in the house, without the sustaining thrill of a new life to protect. The needs are startlingly similar, but the joy is replaced with sorrow and dread. Of course I know I’m lucky in many ways. Things could be much worse. We have help during the week. And Mom is as sharp as ever, reading The New York Times and The New Yorker magazine from cover to cover, commenting on the news (“In this country we have Socialism for the rich and free market capitalism for everyone else”) dismissing her Doctors (“When you’re past a certain age, they just don’t care any more.”). She still loves life and her spirit is ferocious. Watching her do her physical exercises has shamed me into getting back into shape myself. She’s still herself, and she loves being here. She feels like she’s been sprung from prison. The used the term ‘evacuated’ the other day, as if we had plucked her from the midst of some natural disaster when we took her out of the “skilled nursing facility” where she had been living after a urinary tract infection almost killed her.

Annie is a huge help. Of course that has its downside also. Mom said something other days about being so grateful to me and my brother. I pointed out that some significant portion of that gratitude should be directed toward the one person in this situation who isn’t related to her. It’s an immense unfair burden for Annie, who provided hospice home care, spelled only by her two sisters, for the last six months of her mother’s life. The sight of a walker or a wheel chair, a bath seat or a bedside commode, brings back the most painful memories of her life, and that’s only part of the problem. My son is living with us now also, and he has dubbed the tiny, 200-year old apartment (Five rooms and two baths on two floors connected by a narrow stairway) the NoPrivacyHouse. The name made Annie smile, and she needed a light moment, but it’s another fact and it remains just like all the others: we have no privacy at all any more. Annie feels dislocated and displaced. The small comfortable life we had cobbled together for ourselves is gone. The disruption is temporary, but with no end in sight, some future restoration of our old routines seems far too abstract for comfort. For now this is our life. It’s constricted, as the lungs constrict during an asthma attack. It’s hard to breathe, impossible to relax. I found myself resting in a customers house for half an hour yesterday, just lying down in the quiet room, beyond the reach of obligation, feeling the vibrations of stress shiver out of my nerves like a struck piano string, wobbling to silence.

I needed that, but I couldn’t afford it. I need to work that job and I need to finish it. I can’t afford this new flimsiness, this swooning lack of energy. That’s scary. And my brother, to whom my mom feels such gratitude, is living five thousand miles away in another country, and generously sending an extra $300 a month to help out. That just about covers a week’s groceries in the most expensive town in America. Thanks for the gumball, Mickey.

So money is tight and living is tight; everything is tight, inside and out. A lot is happening just inside me, weird climate change in my frontal cortex and my limbic system. I feel simultaneously a wild howling sexual desire, the need to throw orgasms at death the way a kid might egg the factory owner’s house on Halloween. And at the same time a scrim of age and decay seems to cover both of us, making the whole idea feel creepy and repellent. The two feelings cancel each other out and nothing happens, which works well for us since sex is the last thing on Annie’s mind right now and we live in NoPrivacyHouse anyway.

So it’s grim and debilitating and the strange dark secret of it all is that I feel absurdly blessed and lucky to have this time with my mother, whatever the cost and however long the ordeal goes on. Because make no mistake, it is an ordeal and I can’t wait for it to be over and I hope it lasts and lasts, until I finally get enough of my mother to really remember her by, because soon enough the remembering will be all I have and I dread that day and I all have is the time until that day to prepare for it.

So we push forward, easing her end, taking the flickers of rest or pleasure when they present themselves, and hold her and hold each other and somehow make the best of it.

Maybe it could be a Norman Rockwell painting, after all.