Marcia Aldrich | Longreads | October 2019 | 19 minutes (4,770 words)
I can’t pinpoint when it began. Or whether what is happening to me is the same thing that happened to my mother. Is it the first signs of dementia or just your run-of-the-mill aging?
I had lived far away from Pennsylvania and only seen my parents intermittently for short visits since going away to college. With my mother, the first sign of change I noticed was that she couldn’t remember the titles of novels she had just read or television shows she had just watched. She’d search an invisible memory bank to identify the titles with a baffled look on her face when she found it empty, then shrug the moment of forgetfulness away. Her usually precise way of speaking, of being in the world, started to soften at the edges. She mumbled as if she were sucking on a lozenge she didn’t want to spit out or swallow. I thought she was just slowing down and this was what aging looked like. By the time she became a depressed person, the deterioration had been going on for years and it was something more than aging. Who knows for how long the changes had been fomenting, how far back I would have to go to ferret out the beginning — 10 years, 15? After all, she worked at hiding the slippage, handing the phone to my father when I called, laughing away the mistakes she made. She used her considerable charm, long honed, to divert attention from the truth, for example that the New York Times Sunday crossword puzzle that she had been religiously completing for decades was now blank, the squares empty, folded in the bathroom where she thought no one would see it.
At a more advanced stage, she became resistant to change. My mother, who had loved nothing better than a shift in scenery, a drive, a travel expedition, became someone who didn’t even like walking out the front door. My father couldn’t get her in the car to make their seasonal pilgrimage back to Pennsylvania from their winter’s stay in Florida. She wouldn’t do it. I pictured my mother bracing her leg against the door, refusing to enter the car, and my father who wasn’t about to use force, though I’m sure he thought about it, trying to coax her as one would coax a child to do something they didn’t want to do. What did he promise her? A new ring? An ice cream cone? But nothing worked and weeks would pass with my father delaying their departure, carrying the suitcases back inside, until something broke and she got in the car. He’d call my sisters and me from a spot on the road to say they had finally started the drive home. What had eased enough for her to proceed? My father said he didn’t know what allowed him to hustle my mother into the car, but he wasn’t going to count on these sudden and unpredictable openings anymore. He was giving up, and thereafter they stayed holed up in their condominium in Pennsylvania and never went anywhere again.
Those were the years when my mother refused to see me. For five years I’d make a flight reservation from Michigan, where I lived, and the day or two before my departure my father would call and say Your mother doesn’t want to see you. And I’d cancel the reservation. I never knew exactly what was going on — did she feel shame about what she had become and not want me to witness it? Or had the dementia unearthed unhappy feelings she harbored about me, wounds from the past? My father could not enlighten me, or would not enlighten me, but he also wouldn’t go against my mother’s stated wishes. The conversation was brief and apologetic. His main objective was to return to my mother and calm her down, and to do this he had to tell her I wasn’t coming.
What was heartbreaking was that my mother was lost. She didn’t know where she was or who she was, or even whether the question of identity was relevant since nearly all her memories had disappeared.
My father would call me from time to time during this period to tell me that my mother spent her days either weeping or angry, veering back and forth between these two emotional poles. Weeping for what she could grasp had become of her, anger at my father who had claimed the unenviable task of trying to take care of her. She didn’t like for him to tell her what to do even if he was just trying to help her. To her, he was interfering, pressing her and pressing upon her, and she didn’t like it. She lashed out at him, as he was the only person available to blame or resist or absorb whatever knot of emotions welled up in her from time to time. She had to lash out, and he was there. When my sisters and I tried to intervene, which we did, he abruptly hung up the phone or showed my sisters the door.
A few weeks before she died, my sisters, in conjunction with my father, told me I had to come regardless of whether my mother would want it or not. They kept my impending visit from her and I drove with my children from Michigan to Allentown. In a way, the last frontier had been reached. She had given up caring about her hair and that was truly unthinkable. She couldn’t be cajoled to get it cut and she refused to wash it. Her teeth had chipped and she wouldn’t fix them either. The innumerable pairs of glasses she had were strewn about her bedroom with their arms missing or snapped in half, as if she had stepped on them in the dark. Indeed, my mother was in the dark. The whole house of cards had collapsed.
The abandonment of maintaining her appearance was the least of it. It was shocking, of course, for all of us who knew her as someone who took an almost excessive interest in looking presentable, but it was not what was most heartbreaking. What was heartbreaking was that my mother was lost. She didn’t know where she was or who she was, or even whether the question of identity was relevant since nearly all her memories had disappeared. Who are we without our memories? Is there an essential core of personhood that exists without the foundations of memory? I don’t know. Who was the man, my father, who bossed her around? Had she really married him? What was she supposed to do when she got up in the morning? She didn’t have the faintest idea. Her nightgowns were stained — so what? She hung them on the hooks in her bathroom anyway. The books she used to read lay limp in her hands — she couldn’t distinguish one page from another. The words were just a scramble on the page. And in the end she didn’t remember me, her daughter.
I used to wonder if my mother saw the signs of her deterioration. Was there a day when she stopped to wonder what was happening? Was she aware of what she was losing over time? As far as I know she did not speak to my father, and my father did not speak to her; they did not speak together about dementia. They didn’t agree on a plan in the eventuality either one of them needed medical intervention, whether it be for dementia or some other condition. Denial, baby, that was their unspoken motto. And to my knowledge my mother never confided in anyone else what her fears might be. Imagine. She must have been frightened by what was changing in her brain, what was changing her, but did she really speak to no one, consult no one? From the evidence, the answer appears to be that she kept her own counsel. She felt shame; my father felt shame; together their approach was to keep my mother’s condition hidden.
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By the time my father grasped that my mother was in full-blown dementia and that she couldn’t be left alone, it was too late to raise the issue of moving into a long-term care facility. It was past the time to have a reasonable conversation about such matters and my father being the thoughtful man he sometimes was did not feel comfortable imposing his choice upon her. And so he did nothing, a choice he regretted after my mother died and he began to speak more freely with others about his experience. He came to realize she might have been helped during this terrible period by experts who knew how to treat patients with dementia. Alzheimer’s was probably what my mother had, but since she refused to see a doctor about her condition or be tested, and since my father acquiesced to her wishes, she was never formally diagnosed. Their shared response to the calamity — feeling a social stigma — worked against their seeking help. Both of them suffered. They were going to suffer one way or another but they suffered more than they had to. My father shut people out, shut out my sisters and me, in a bid to shield my mother, and he took upon himself the full burden of her care.
And again, I ask: When did either of them begin to detect something was amiss? What were the first signs and why did they ignore them? Their lifetime habits did not prepare them for the fate that was in store for them. Their unreasonable concern over social appearance mattered more than getting help. Denial of what they felt meant that when something else was called for they came up empty. And so eventually one morning my mother fell and hit her head against the wall. But since she had dementia, she couldn’t remember that she had fallen and didn’t tell my father when she emerged from her bedroom. My parents now slept in separate rooms, at opposite ends of a long hallway, with their doors shut. My father had no idea my mother had fallen. She complained of a headache. Still, since she often complained, my father ignored her. The headache worsened over the day until by lunch she felt positively awful and my father realized something was seriously wrong and called an ambulance. She’d had a cerebral hemorrhage, a severe one, and by 9:00 that night she was dead.
She was 83. My best guess is that she had been floating in one stage or another of dementia for the 10 years before with very little to hold on to. Not surprising that in the end she fell and hit her head, an end she had seemed to be drifting toward.
At the time my sisters and I wondered, or I should say worried, whether what had happened to our mother would happen to us. Would we inherit our mother’s predisposition toward dementia, and would we be any better at ferreting out the signs? We inherited all sorts of health conditions from her — my sisters had her thyroid condition and her high blood pressure, among other things. I did not share a father with them, and so I had a different genetic make-up. I escaped the thyroid problem and favored my father, who was wound too tightly, given to ulcers and petulance and flat feet. In fact, I thought of myself as my father’s daughter, for better or worse. After my mother’s death, I was glad for the first time that I took after him. His brain was sharp, his memory keen right up to the end of his life. His heart and eyesight were not, but his mind functioned exceedingly well. I hoped I might follow suit. I foolishly believed that a lifetime of the mental challenges that come with being an English professor, a scholar, and writer would keep my brain agile and keep me safe from my mother’s fate, a fate I imagined seeing the beginning signs of in one of my sisters, though she didn’t confess any fears on that score. How does one separate the signs of aging, the effects of it, from the signs of dementia? Experts say aging and dementia are different, yet might they all blend together initially? Still, I thought, whatever is going on with my sister, it won’t happen to me. I remember standing at my nephew’s wedding and thinking just that.
But now, I’m not so sure. I see signs of something in her. Now I think, what arrogance to imagine I’ll escape it. If I’m honest, I do not feel as I once did, and it isn’t anything that has passed or is going to pass. It’s worsening, deepening, and I don’t know whether it is the natural process of aging or whether it is the first signs of dementia. Perhaps because of my mother, I am paranoid.
Whatever has been happening, it has probably been bubbling below the surface for a while until it became of sufficient force to break through. Loss of language is how I’d put it. Maybe about five years ago, learning the names of my students became more arduous. It was never easy to learn new sets of names each and every semester. My two classes each enrolled at about 30, so that meant 60 new names each semester to master. And I had to learn how to distinguish one Emily from another. Sometimes I had four Emilys in one class. I found myself growing anxious when I had to call on students — would I remember their names? Would I get it right? I used to pride myself on knowing my students’ names as early in the semester as I could, to speak familiarly with them, and I could see there was erosion in my ability to do so. There were some names that no matter how hard I practiced them, they disappeared. I’d say Mary Clare, Mary Clare over and over, then an hour later there’d be nothing, just a blank space where the name used to be. There was nothing to be done but avoid having to use the name entirely, my mother’s old trick. Was I heading toward a nameless world, and did that mean people would be less real because I couldn’t name them?
I began struggling to pluck out of the air the titles of works of literature and the names of authors, tasks I had been doing for decades with ease.
That wasn’t all. I began struggling to pluck out of the air the titles of works of literature and the names of authors, tasks I had been doing for decades with ease. Yes, this is what a sestina is. Elizabeth Bishop wrote one of the best and so did Dylan Thomas. Then I’d reel off its form. Yes, Ezra Pound “edited” T.S. Eliot’s “The Waste Land” and the version we admire is his version. Literary history began to fall away. I pictured titles and names slipping over the edge of a cliff and falling in slow motion beyond my reach. There it goes, another one gone. I began to dread that my decline would be exposed. You know the nightmares good students are visited by — the ones where they arrive in the wrong classroom and miss the test or where they are sitting at their desk ready to take their exam only they have no pencil and can’t get one. An endless variety of this performance anxiety dream exists, only now I was having an end-of-career anxiety nightmare. No longer being tested for admission into the high-achieving club, I was being tested as to whether I was fit to remain. I’d wake up having dreamt I was in an interview and asked what books I’d teach in a particular course and I couldn’t remember a single book. The interviewers stared at me with a look that said I no longer belonged. I didn’t want to be one of those professors who shuffles along the halls and into the classroom with their yellowed notes fraying at the edges grasped under their too-thin arms. I had always been nimble on my feet, quick-witted, fast-paced. What if I was no longer any of those things, and would my students begin to notice and whisper among themselves? How much longer did I have?
That is the question I began to ask.
I retired in 2017 at 64, before anyone noticed any change, and that’s the way I wanted it. I didn’t want anyone but me to answer the question. I wanted to leave when I was still on my game. Call it vanity, call it pride. I didn’t want to spend the last days in the classroom trying to cover my lapses. Perhaps I overreacted to the signs I was seeing, perhaps I was overly sensitive and took a punishing attitude toward my own slight aging. I think that’s true — I am a perfectionist, with high expectations of my own performance. Still, I felt I had done what I set out to accomplish as a teacher; I wasn’t leaving with a sense of unfulfilled hopes. If I continued teaching, I would be repeating what I had already done many times. In the main there was nothing left to prove and I was ready for the next phase of life. Or to put it more honestly, I didn’t know how much time I had left and I wanted to spend whatever time I had doing the things that did seem unfinished.
I’m in that next phase now, and I think most people who know me would say my aging is going very well, which is to say I don’t appear to be aging at all. Note my emphasis on appear, appearance. I look the picture of health — agile, active, younger than my age. I move faster than most, think faster, too. Nevertheless, inside, invisibly, change is happening, and I don’t know if it is what my mother felt, but I’m not denying its existence, I’m not pretending to be something I’m not.
In the past year tinnitus has come to visit. No one knows why it should be so. I haven’t sustained hearing damage that I am aware of, unless living too close to construction in the past year caused a trauma. Whatever causes tinnitus, an inflammation of brain tissue, a trauma, it has claimed me as a new residence, 24/7. It never goes away and I don’t believe it ever will. It’s not the ringing some people describe — I have static swooshing, like an electric current is always running in my head. Of course I hate it, and sometimes it freaks me out, especially at the outset, but even now after I’ve had a year of adjustment, sometimes I worry that I’m going to try to yank my head off to get it to stop. Unlike my mother, I speak with my husband and my daughter, who is a nurse, about what is changing. It was she who suggested that I sleep with white noise accompaniment, a simulated rain storm, because the worst part is lying awake and hearing my own head, which seems very loud, much louder than when I’m walking outside and blend into the ambient soundtrack. The worst times are when I’m alone in quiet spaces. My daughter brought me new headphones because I listen to music a great deal more than I used to. I do worry that someday I’ll have to pipe noise or music into my head all the time. I might have to live in a perpetual rainstorm to mask the storm in my head.
Tinnitus afflicts older people — not entirely, but mostly. And because I think most things are connected and don’t stand alone as isolated occurrences, I wonder what my tinnitus is connected to. What else is shifting in my brain, what parts are thinning and what parts are puffing up, and how might this be affecting my memory?
My memory. I am going to try to describe what I am experiencing, but I have no verbal models. My mother might have felt this way, only she never said. I’m forgetting things. Not my keys or the burner or the street I lived on when I was 7. I’m forgetting words — it’s as if they’ve flown the coop. The forgetting is worsened by anxiety, and of course I become all the more anxious because I can’t remember the words. My computer broke recently, and trying to get it fixed was a long, frustrating process during which I became extremely, almost inexplicably anxious. I had writing deadlines and I was missing them; I worried I was losing files, losing recent work, and my email wasn’t operating either. I spun into crisis mode, as if the hard drive of my life was being erased.
One afternoon a few days into the crisis, I was trying to have a conversation with my husband when key words in my sentences disappeared. Words like “strawberries” — I was asking if we should stop for (blank) when we drove by the store. I knew this store had sold fresh (blank) because we had bought some a few days ago and they were delicious. A simple word, and for the life of me I couldn’t find it. And so it went, a whole series of sentences missing crucial words — robot, keyboard, strawberries. I was having a brain freeze — like when you eat too much ice cream too fast and your brain freezes. Only I wasn’t eating ice cream, I was driving along in the car after buying a new computer and I couldn’t put the simplest thoughts together. Naturally, I freaked out. My chest seized up, my left arm went a bit numb, even my jaw got into it. Quite extraordinary really, all because I couldn’t find the words in my head. It passed after an hour, at the end of which I felt like a ragdoll that had been shaken and shaken in the hands of an impatient nasty child. What if this was a glimpse into my future, not an hour of brain freeze but days on end? What then? I was used to plucking the words I wanted from the air with ease, right away, not searching through all the hangers of my closet for a certain white blouse and being unable to locate it.
How does one separate the signs of aging, the effects of it, from the signs of dementia? Experts say aging and dementia are different, yet might they all blend together initially?
The loss of access to words has been a specific change. There have been others that are harder to describe that I suspect are related. The swooshing in my head, the fogginess with language reflect a larger underwater feeling, a feeling that I am at a new remove from my so-called life. I don’t feel as present as I did, anchored in the here and now, feeling the immediacy of sensation. It’s as if everything gets to me a few seconds late. I feel out of step with life itself, or the perception of life, and isn’t that about the same thing? It’s only a second or two now, but again what does the future hold. Did my mother feel as if she were floating underwater or if not fully underwater, as if she were floating on the skin of water and the water was lapping up to cover her ears? At night lying in bed undergoing the adjustment of still hearing my own head too loudly and waiting for the rain sounds to soothe me, I realize how anxious I am, how encased I am now in my own world of sound, and more removed from my husband lying right next to me. It’s a little like feeling entombed. I’ve taken to breathing deliberately, to calming myself and welcoming the rain to fill me. Still none of this is normal.
I often feel low. There is no justifiable cause to identify for my lowness. I am lucky in many ways — I am loved, I have mobility, time, freedom. I am not well-off, but I am able to live comfortably, modestly. I live in the pacific northwest, a place both beautiful and politically enlightened. I am well taken care of. And yet I often wake up feeling low, as if this lowness is my new normal. The skin that protects me from pain has never been very thick, and in the past few years it has grown thinner and thinner. I feel other people’s pain — I can’t shake the look on the woman’s face asking for money on 1st in Seattle, the way she holds out her empty hands. I feel the loss of animals, the disappearance of the orcas and salmon, the loss of habitat for the bears and wolves, the smaller and smaller rookeries for the herons on the island. None of these losses are happening out there; they’re happening inside me.
My mother became a depressed person. At the time I wondered if she had always been a depressed person who had mastered the mask of cheerfulness and well-being; had she carried a depressed person inside her, and did this depressed person emerge when dementia stripped my mother of the appearance of happiness? Or did the dementia bring the depression? I went back and forth asking which it was and came to no conclusion. So it is with me. I can’t tell whether my depressed person has been given more room to roam, or whether it is a new resident, like my tinnitus. In the end, I suppose, it doesn’t matter, since there isn’t anything to be done about it except to track it, describe it, name it, cope.
Other inhibitions have broken down as well. We’re taught that talking to oneself is a bad sign. We worry when we encounter people on the street talking to themselves — the inhibition that keeps the voice in the head and not vocalized has been broken. I used to talk out loud to myself when I was doing something mundane and repetitive like ironing. I tended to iron offstage, in a small room or basement, and alone. I like to iron. That’s an odd thing, I know, but I do. I iron all sorts of items that don’t need ironing just because I like doing it. And I talk to myself while I’m doing it. I explain all sorts of things that are important to me but to no one else, things I’ll never have the opportunity to explain fully because no one would ever want to listen to me go on and on about why I stopped riding horses, and what I’ve thought about that ever since, or how it came to be that I didn’t continue acting after college but think I would have made a good director, only there were no female directors and so it never occurred to me until too late. Reckonings, really — working out why I did this and why I didn’t do that, and what I think about it. Until recently I’ve kept these talks with myself private. But now, along with the tinnitus and the brain freezes, I’ve found myself talking outdoors while I’m walking my dog, Omar. Sometimes I think maybe I’m talking to him. After all, we spend so much time together now — we walk everywhere, hours a day — that maybe he’s slipped into being my sounding board. He does listen. He reacts. It isn’t as if he walks unaware that I’m talking. Still, it’s a stretch to think I’m really talking to him. I’m talking to myself and that means I’m talking to some imaginary audience or listener, a tribunal that hangs in the air and goes wherever I go. I’m presenting my case to them. It must be unbearably dull to hear me go on and on about what’s happened in my life. I know I repeat myself, going over the big decisions, the big mistakes, the wounds that never heal, all those moments of living that we struggle to make sense of, to forgive, to let go.
I can’t help but wonder what it was like for my poor mother. In her later years, she didn’t walk by herself, she didn’t have a dog to confide in. She was cooped up inside, afraid, alone, with just my father, a man she sometimes knew, sometimes feared, often railed against. What was going on in her head — what voices did she hear, what stories did she return to, what was she trying to set right and let go of? I’ll never know why she didn’t want to see me those last years. Though my mother has been dead for a long time, I’ve never felt closer to her than I do now. I imagine her with me when I’m lying in bed waiting for the rain to fill me and float me into sleep. She feels close enough for me to touch.
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Marcia Aldrich is the author of the free memoir Girl Rearing, published by W.W. Norton. She has been the editor of Fourth Genre: Explorations in Nonfiction. Companion to an Untold Story won the AWP Award in Creative Nonfiction. She is the editor of Waveform: Twenty-First-Century Essays by Women published by The University of Georgia Press. Her email is firstname.lastname@example.org..
Editor: Sari Botton
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Also In the Fine Lines Series:
Introducing Fine Lines
An Introduction to Death
A Woman, Tree or Not
Dress You Up in My Love
The Wrong Pair
‘Emerging’ as a Writer — After 40
Losing the Plot
A Portrait of the Mother as a Young Girl
Elegy in Times Square
Every Day I Write the Book
Johnny Rotten, My Mom, and Me
Everything is Fine
Bracing for the Silence of an Empty Nest
To Grieve Is to Carry Another Time
Game of Crones
Father’s Little Helper
Conversations with My Loveliest
What is Happening to My Body?
Keeping my Promise to Popo