The Homecare Diaries: Animating the Map

I spent half an hour this morning helping my mother put on her bathrobe.

The goal was to get her bundled up and across the ten feet from her bed to the kitchen table for breakfast. Like some hapless, out-numbered platoon trying to retake some anonymous numbered hill in Korea, ultimately we failed. We managed to get the robe on, with me bracing her trembling legs and holding her up from the back while we searched for the second arm hole – the second arm hole is the killer, elusive and maddening, always too high and too far back, so it seems as if she will have to dislocate her shoulder to fit her hand in. Suddenly in the closing hours of your life, you have to be a circus contortionist simply to get dressed. Still, we did it. But we couldn’t get to the dining room table because her legs simply couldn’t support her weight this morning. It’s particularly upsetting because she seemed to be making so much progress over the last week. Sometimes the physical therapy and occupational therapy and the exercises seem like nothing more than worry beads, a soothing distraction, a way to keep body and mind occupied before the next onslaught of the disease. Because when it happens, when the storm surge arrives, all the sand-bagging and levee building amounts to nothing, swept away by the greater force of an illness no one understands, not even the doctors.

We finally got Mom into her ‘cadillac’ walker – it doubles as an ad hoc wheel chair, and we maneuvered her to the dining room table where she ate cereal and drank coffee and talked the situation over. I remain awestruck by the tenacious ability of the human brain to accept an ever-narrowing world and inhabit it, accepting an ever shinking set of goals and small victories. Mom had hoped to start up her communications consulting business here, and go shopping, and move into the lovely assisted living home on Main Street. Now she takes it as a satisfying and hard won triumph when she can walk on her own to the bathroom late at night. I admire the stoicism with which she adapts to this contraction, but entering the claustrophobic world of her illness, living there with her even as an outside observer, takes a grim toll. It’s exhausting and frightening. At first I thought it was loosening and uprooting the structural supports of my own existence, but I realize now that I was mistaken. Instead, it’s revealing the structural supports of my existence, placing the realities of my life and life itself under the raw and unforgiving fluorescent lighting of mortal truth. It’s my illusions that have been torn up strewn about the ground: the illusion of immortality, the illusion of the ever-nurturing Mom, the illusion of a benevolent universe. I’m going to die as she is dying; I have to nurture her now and the universe, God-controlled or the product of random chance, really doesn’t care at all. The result is I feel old myself, inches not miles from my mother’s precipice, caught up and tangled in the same sticky web of decay and disorder.

It makes you understand how delayed stress disorders happen. During a car crash, or a wartime trauma, things happen too quickly to grasp the nature of the event. But here it’s all occurring in slow motion. You can feel yourself shoving your emotions aside, stamping them down, packing them like boxes into an overstuffed closet. You can feel the effect of looking down and pushing forward with each day, the stress building up like a toxin coating the nerve endings. It will take years to cleanse the blood of this sorrow, and it may never happen. I may not have enough time.

As a caretaker, the erosion of your world happens on so many levels at once – that’s what’s hard to grasp from the outside. Your time is shredded, days starting later and ending sooner and trimmed from the middle with new obligations. This means that money becomes an issue and even though the thought of a nursing home draining away a life’s savings feels grim and Dickensian, some fist inside me clenches and says “better her than me” I cannot go bankrupt here. I have to work. That’s not a debate point, it’s a fact. Having no choice simplifies decision-making. But I’m exhausted and that slows work down, also. I have no private time now; Annie and I have no time together except for a stolen cup of coffee or a brief talk in the car, parked in the driveway. I’m writing this as the visiting nurse works with Mom, tapping a few stolen sentences into the computer between consultations and conversations. The emotional wear and tear combines with my mundane practical worries and the inexorable presence of death, the grinning skull suddenly pushing out of the surface of everything, and the sadness and the pity, and the stupid childish anger and the guilt over that anger to create a separate disability that folds over and magnifies the effects of its own symptoms. It reminds me of baking bread, folding over the dough and kneading it, watching it double in bulk under a checked cloth on a warm window sill.

But no one wants to eat this loaf. No one.

Mom was in the hospital for a couple of weeks after a bad fall in the bathroom and we got the house back and dismantled her bed and tried to live normally. But of course life revolved around the hospital and we knew it was just the eye of the hurricane. The next storm wall was coming. I log onto Weather Underground a lot these days – the weather has taken on some mysterious new urgency. I see the blob but I have no idea what it means for me until I click on the ‘animate map’ button. Then I can see which way the weather is moving, caught in a half hour loop. I relax: it’s heading Northeast of us, despite the fact that the official forecast calls for rain. I need to click that same tab in my own life, in my mother’s condition. I see the blob, the angry yellow and orange of a harsh Nor’Easter. But what does it mean? Is this a brief setback, or just another bump in a bumpy road. Does it signify the beginning of the end, or is it the prelude to a miraculous resurgence? I have no way to tell.

But I take comfort in small things.

When I found my Mom on the bathroom floor that morning three weeks ago, and helped her to her feet, both of us thought it was all over.

She hugged me and said. “We had fun, didn’t we? Nobody had more fun than us.”

It was true. Some days, some part of each day, it’s still true.

So we hang on and hope for more of them. There’s nothing else we can do.