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Later, in my teenage years, she took to pacing the basement, carrying on lengthy conversations with her brother who wasn’t there, rearranging her massive piles of toilet paper for comfort. At times she hoarded paper and other goods, which I periodically gathered for donation before she began rebuilding her supply. At times she purged, throwing out treasured belongings that couldn’t be reclaimed.
“We’re going to miss trash day!” she said urgently, angrily one day, a few months after I graduated college, when I’d flown home to file her Social Security benefits, as she scooped up garbage in armfuls from our kitchen trash can and carried it out to the front sidewalk, wild look in her eyes. I quickly realized I had better get out of her way. She had times when standing in the way of her obsessions meant facing physical harm. No obstacle would prevent her from getting that garbage to where she felt it belonged.
Always she had times when she was angry and scared, when she stormed in to wake me with her worst fears in the middle of the night, hoping I could solve them. When she pleaded for help. When the entire house was rocked by her tremors.
* * *
The first six stages of Alzheimer’s encompass psychological torment, the pain of which I witnessed without understanding its cause. Growing up I took care of the practical. I did this mainly because the emotional takes too great a toll. Because witnessing my mother’s decline, and being helpless in front of it, devastated.
As a teenager I managed her finances. Refiled her taxes, corrected errors in her mortgage refinance. Paid the bills, set up installment plans for my middle sister’s tuition. Drove her when she didn’t want to drive. Did household maintenance and tasks. In college I rebalanced her retirement accounts. Put together spreadsheet after spreadsheet, researched meticulously, when she needed help she couldn’t request and I couldn’t provide.
I took her worries and fears as my own. I lived with her lack of boundaries, with physical discomfort as she encroached on my body and my space. I still question—was it okay she did this thing, or that? Was that natural? Was that normal? Was that wrong? Some things I never speak of. Her shame is my own.
I missed most, but not all, of the seventh stage, in which physical degeneration takes primacy. This final stage is broken down into even more substeps, in which patients lose the ability to speak, use the toilet, and walk; to sit up, hold up their heads, smile, to swallow.
I wasn’t willing to change her adult diapers. I wasn’t willing to bathe her. I wasn’t willing to keep having avoidable emergencies thrust upon me, by those who hadn’t listened or granted assistance in caretaking when I needed it, who didn’t help enact methods of prevention for those emergencies, who hadn’t even believed she was ill until the proof was undeniable. I wasn’t willing to keep losing myself in grief. My mother’s decline isn’t something I can recount, in every agonizing detail. To do so would cost too much. I did what I could, for as long as I could.
So much of my life I thought only in terms of what my mother wanted or needed of me, rather than what I wanted or needed for myself. I served as a vessel for my mother’s desires, rather than as a creature of my own.
The best thing I did was finally to say no, to anger and guilt and invocation of duty, and to persist in saying it. The best thing I did was say yes, to taking those first steps toward carving a space for myself.
* * *
I’ve watched my oldest sister grapple with some of the same emotions I faced. I’ve seen that same letting go, in which she sends photographs of green sunflower seedlings in their small burlap sack on her windowsill and talks of new growth. I can’t speak for her journey, can only observe it. Grief is personal and private. We’ve lashed out along the way. We’ve found peace, too.
My mother had a similar trajectory. She had her days when she was plagued by doubts. She had her days when she lashed out. And then, too, she arrived, finally, eventually, at some sort of peace. When she sat docilely as I made her a simple dinner of chopped zucchini and yellow squash, white rice, and seasoned ground beef. When she happily ate leaf after leaf of dried seaweed, covered in sesame oil and sprinkled with salt. When horror at life’s possibilities had ceded, when recognition itself passed, replaced by the carnal pleasures of the everyday.
My father used to grow angry with my mother for eating entire packets of what’s meant to be eaten only as a vehicle for conveying rice, vegetables, and meat. After he became her caretaker, he was simply happy when she ate.
* * *
I know now what I didn’t know then: that the disease lasts long enough to exhaust us all of caretaking. Of loss. No one can withstand the strain alone. No one should have to. It’s not the effort that’s so defeating. It’s the inevitability of the outcome.
Early-onset Alzheimer’s demands surrender. The disease doesn’t leap up; it grinds you down slowly. The sadness you’re left with is more depression than shock. Whether for sufferer or bystander, the disease seems an endless process of remembering, resisting, and finally letting go.
I write from a primitive campsite I’ve returned to many times. In the weeks since I last visited someone has fashioned a crude bench, a wet plank balanced on two flat stones. The campsite is, in this way, improved. Litter fills the fire ring—an empty glass bottle, and an empty can of beer. Large insects fling themselves toward my headlamp’s illuminations as I type, buzzing against netting. A few find their way in, to rub their slender torsos against the light. A creature screams wild cacklings from the trees, in the dimly lit night. No other parties are here. The stream trickles, as it always does. The air is humid, as usual.
Sometimes the hardest thing is to do nothing. That I didn’t return before she left doesn’t undercut the ache I feel in being so physically far away, as she approaches death. I can’t attach poetic imagery to something that is so brutally unornamented and real. I can only look outward, at the poetry in the rest of the world.
10 WANT
Part One
My life felt like it truly began after I moved to New York City for college. In the city’s controlled chaos I could get lost, be anonymous. For the first time I felt I fit in.
I made friends who didn’t treat me as a cultural outsider, who weren’t white. Many were Asian-American. Those of us not raised on the East Coast bonded over having never had Asian-American friends before. Nearly all were well-off business-school kids, culturally conservative in comparison to writer or climber freaks. Nearly all came from tightly knit communities.
I didn’t come from similar wealth, though I became accustomed to rubbing shoulders with it. I was a scholarship kid, one raised on the quiet, open expanses of the West.
My mother had taught me how to take care of her, but she’d taught me next to none of the things most learned from their mothers. I’d paid little attention to what I wanted for myself.
My friends helped me learn the most basic of things—how to dress, how to be. They took pity on the feral creature I was. I was utterly oblivious. I’d shut off so much of myself emotionally, built myself into something hard and strong. Underneath that armor was a well of sensitiv
ity and vulnerability.
I fumbled when it came to the most basic of questions, because for so long, I’d sought to appease those around me. I’d been in reactive mode since I was a child, and unlearning that has never truly stopped. I made all sorts of mistakes, but they were mine to make.
Once I suggested meeting a friend at a bar in the Village because its location was convenient. I’d been there once before, when I’d met a group of acquaintances for a live music show. On the night I met my friend—my conservative, Christian, Asian-American friend—something seemed different.
