When she turned 88, my mother and I agreed that it was time for her to leave the world where she’d spent her whole life and the Chicago condo she’d lived in for forty years to settle into a small apartment in a retirement community just two miles from my house in Waterville, Maine.We worked in surprising harmony preparing for the move as we sorted stuff into giveaway piles, throwaway piles, and keepers—surprising, given the wrenching nature of the task for my mother and the backbreaking nature of it for me as I dispatched carload after carload of the giveaways and trash bin after trash bin of the throwaways. I also trashed a useless item of my own—the irritation I’d carried around for years at my mother’s refusal to part with anything, to liberate herself (and her sofa) from stifling plastics, among other things. Free of my irritation (pretty much), I considered the resonance of her driving need to accumulate clutter, to hide away for safekeeping even bags within bags and containers within containers.
Was my mother filling some emptiness I didn’t know about to create an illusion of abundance? Having grown up in the Depression, did she fear being impoverished, reduced to nothing? Was she aware at some subliminal level that Alzheimer’s disease was hovering behind her own smiling face, that it would pilfer from the brain to which she’d entrusted a long life’s worth of experiences? That all she’d stored up to nourish herself and her loved ones on a rainy day might be stolen by a lethal partnership of time and disease?
As I write about my mother, I try to hold onto what seems essential about her. This is an ongoing challenge, since my mother suffers from a disease that tenaciously chips at her core. We are all, of course, fluid and elusive beings; yet, people with Alzheimer’s dramatize just how far we may inadvertently travel from who we thought we were.
The master identity thief started creeping up on my mother without our recognizing it as Alzheimer’s. When it hits late, as it blessedly did in my mother’s case, the disease can lurk in the shadows for quite awhile, passing as ordinary short-term memory loss. Since she’d been uprooted from her familiar Chicago turf, disorientation was to be expected. As was her bafflement at the onslaught of new-fangled electronics—digital clocks, DVD players with too many buttons, TVs where you can’t simply turn a dial to change a channel, voice mail machines that mumble at you so fast you can’t tell what the heck they’re saying. “How do you play those messages?” she’d ask. Never mind that I’d already showed her the single button to press to retrieve a message—not once, but dozens of times.
When it finally sank in that my hitherto intelligent mother wouldn’t simply have turned dense for no reason, I asked her doctor to check her cognitive functioning. He asked her to draw a clock face with the minute hand and the hour hand and the numbers all in a circle. Her forehead wrinkled in perplexity, looking first at him and then at me. She put pencil to paper over and over again, absolutely stymied, pausing to look at me with eyes sometimes pleading and sometimes blank. She got no further than the circle.
“I don’t understand,” she protested.
That has become the phrase she utters more than any other. That, and “you’re an angel” when I help her navigate some turn in the maze of ordinary life. I’m hardly an angel, but to her, the ability to do anything seems heaven-sent.
Yet my mother has a resourcefulness that is, at least so far, serving her well. What she accumulates now are scraps of paper containing a word, a phrase, something she wants to try to hold onto, something reconnecting her to her identity: the name of the holiday that occurs on her birthday (Valentine’s Day); the names of my son and daughter, Mike and Alison; my husband, Peter; the names for things she has—arthritis, Alzheimer’s, televishion [sic]. She hasn’t forgotten my name yet, although I was startled once to find a note she’d left me with my name spelled “Nataly,” and just the other day, on a scrap, I saw my phone number next to “Natilie.” Her memory lapses embarrass her, but not nearly as much as they would if she were more fully herself. In many ways, though, she is still herself—especially in her robust sense of humor, her general cheerfulness, and her generosity towards us, her family.
When I was growing up, one unfortunate form her generosity took was to volunteer to do things for me that I was old enough to do for myself. “Oh, I’ll do it,” she’d say to me, whether it was sewing on a button, making a snack, or running an errand. My button, my snack, my errand. This did not do much to speed the development of my autonomy, and would no doubt earn us the ugly, ubiquitous tag of the day—“co-dependent”—since I was generally quite content to accept the services offered. My mother’s wish to do things for herself and for others, to remain on the giving rather than receiving end, was, I’m sure, a source of pride for her. But as an adult, I was frustrated at times by her inability to ask for what she needed and deserved. And when she did receive a favor from someone, she tended to take with it a nagging sense of obligation. In having to surrender most of that ego-fortifying pride to the exigencies of old age and disease, she has gained an acceptance of the curse and blessing of needing help, lots of it. Mainly from me. I, while giving that help to my mother, have discovered in myself more of her resourcefulness and cheerfulness than I knew I had.
And so we have joined the ranks of many boomer adult children and elderly parents, living out the reversal of our original care-giving roles. The first clear sign of the shift came before Alzheimer’s, about a year and a half before the big move to Maine. My mother confessed on the phone that she was afraid she’d have to move to free herself from the burden of her misnamed “walk-in” (you couldn’t) utility closet adjacent to her kitchen. On my visits over the years I’d discreetly peek into the closet for a damage assessment, only to find a dozen cans of Progresso Lentil Soup staring me down, alongside at least as many cans of Geisha albacore solid white tuna, pink sock-eye salmon, and Ragu tomato sauce—jar after bright red jar. Covering the floor of this closet sat grocery bags stuffed with boxes of Kleenex, cans of Ajax, more cans of tuna and soup and rolls of toilet paper. For extra storage space, my mother used her oven, her dishwasher, and the trunk of her car, frequently filled with bags of bags. At one point, I mentioned to her that the situation had become unmanageable. “I know,” she said. “Shut the door.” It was like an alcoholic’s stash of booze, a secret shared only with the woman who cleaned for her and with me. Finally, though, when I asked from a safe distance, on the phone, “How about we clean out that closet when I come see you next?” the answer was, in essence, “I’d appreciate it. I can’t do it on my own.”
The whole excavation project was trying for my mother, who couldn’t discard a pencil that still had two good inches remaining. Yet the buoyancy she felt from this unburdening enabled her, after we’d completed the utility closet, to say yes when I offered to tackle her kitchen drawers and cabinets. We were on a tear! Getting rid of so many things she’d held onto tugged at her stomach, I knew. Yet when we emptied the very deep drawer full of plastic containers onto her round kitchen table and stood back to witness the spectacle, we had a good laugh. On another trip, after we’d thinned out the contents of her huge bedroom walk-in closet, her apartment was transformed into a place my mother was able to live in happily for another year, showing off her closets, smiling without embarrassed self-irony. This process of emptying that we engaged in together had an unanticipated dimension: it made more room in both of us for compassion. If I were religious, I’d say that angels had settled in those empty spaces.
I felt grateful there was something concrete, finally, I could do for my elderly mother, who lived a two and a half hour plane trip away from me, a distance that often made me feel helpless. Now, since my mother lives near me, since she needs me more than ever, and since her need is virtually guaranteed to increase, I remind myself often of what my most important jobs are: scrupulously arranging her many pills for the week into their little daily containers without making a slip-up that could send her into hours of frustrated confusion; paying her bills while she’s seated in the shower until she needs me to scrub her back or right foot (the one she can’t reach); ordering movies from Netflix that show the entertainers and world she recognizes as more hers than the one around her—George Burns and Gracie Allen, Milton Berle, Ed Sullivan; setting up the disk so all she has to do is press “play.” These matter more than what another part of me says I should be doing: working on my story collection, reading the books piled up beside my recliner—stimulating and rewarding work that has its rightful place. But not, right now, first place. Because my mother needs help, and because I’m the one who can best give it.
As close as I am to my mother, I observe her now from a certain distance, much as I observed my children when they were still very new to me, physically and emotionally dependent on my care. Just as a baby is frequently messy, muddled, and frustrating—spitting up, smelling of sour milk or pee or worse, losing hair, and making sounds that don’t easily translate to identifiable needs—so is an elderly person with dementia. My mother’s body has all the telltale signs of old age, and yet when I pat the towel on her shoulders and sweep it all the way down her back and legs to dry her after a shower, I’m not only saddened by its sags and spots, but also amazed by its resilience, its raw persistence. My mind registers blotches of psoriasis under folds of flesh, calves swollen red with edema, a big toe that rests atop the one next to it, skin crinkly as crepe paper, while my appreciation deepens of life’s mysterious process of unfolding and then folding back up, like a leaf.
My mother is fortunate to live in a place surrounded by greenery, a golf course, lots of open space, and she is exhilarated by what she describes as her long, long walks outside. Sometimes when I ride by on my bike, I see her moving like a snail, hunched over her red walker, on the driveway in front of her building, the parameter of her walks. She takes what pleasures she can in her greatly diminished world. I turn off the main road into Park Residences, pedal up next to her, and watch a smile spread across her face. “You look like a kid,” she says to me, and laughs. “I can’t believe you’re . . . how old are you?”
Life is a process of sloughing off what we don’t need and also, for those with Alzheimer’s, much of what we do need. Try as she did to hang onto all those things bursting from her closets and drawers—that accumulated clutter attaching her to life as she had lived it in Chicago—she eventually bowed with grace to the necessity of letting go and moving on, less encumbered. It was a positive move, one she chose. Now, though, the losses aren’t of her choosing and are beyond her control. Medicines help, as do the daily walks she so enjoys. So does human contact, which she has during community dinners at her residence, and during my and my family’s visits.
Ezra Pound’s famous lines from the Pisan Cantos, “What thou lovest well remains, the rest is dross / What thou lov’st well shall not be reft from thee,” applies in the end only to those whose memories function well enough for them to recognize who and what they love. While bits of my mother have fallen and keep falling away, she is still filled with tenderness. As she follows the inevitable trajectory of Alzheimer’s sufferers toward the disappearance of what had seemed her very identity, the challenge will be mine to fill emptiness with love.