Losing Language

an excerpt from Caring for Mother ~ Virginia Stem Owens Mental, cognitive, intellect—are these all different categories? Does one fit within another like nested dolls? How do they con­nect to one's physical being, to nerves, synapses, motor skills? What binds brain to body? Mind to brain? Soul to self? These are the questions that consumed me as I watched this woman who once memorized medical vocabularies, who quoted reams of Scripture, who juggled employee rosters and payrolls, as she dissolved into a puddle of unknowing. I had already discovered that my mother's brain was not pro­ducing dopamine properly. Without this neurotransmitter, the electrical impulses, which ordinarily would signal her muscles to move, get jammed or misdirected. This accounted for her slowed and uncertain gait, laggard speech, hand tremors. All classic Parkinson's symptoms. I knew too that the substantia nigra, the bit of brain tissue responsible for producing dopamine, dies more rapidly in Parkinson's patients than in the rest of us. The drug levadopa, popularly known as L-dopa, has until recently been the only medication available for treating the disease. Once absorbed by the brain, L-dopa is converted to dopamine. One might conclude, as I did, that treating Parkinson's was thus a simple matter of adding the right amount of L-dopa at the right time. Like mixing gasoline and oxygen in the proper ratio so spark plugs can fire the car engine. But here I fell victim to an inadequate paradigm. For one thing, a car engine, even at its peak performance, never pro­duces its own gasoline. An automobile's internal organs do not whisper messages to one another along extended pathways. Not even the computerized sensors in newer models come close to approximating the delicate interchanges that transpire between biochemicals in the body. Synthetic L-dopa is no mere gas tank additive. For one thing (I would not learn this for another year), once you have started adding L-dopa to your brain, you can never stop taking the drug. Put a healthy person with no previous Parkinson symptoms on L-dopa and, should he stop taking the medication, he will develop tremors and other manifestations of the disease. Like a malingerer on the dole, the dopamine-producing section of the brain quits working if it knows it can depend on chemical welfare. Also, L-dopa, while the most effective treatment for Parkin­sonian symptoms, is also the most problematic. My mother struggled with the overwhelming waves of nausea it caused, even though the form she took also contained carbidopa, an additive designed to reduce L-dopa's side effects. Hallucinations, I learned, were yet another unwelcome con­sequence of the drug. I remembered references to hallucina­tions in some of the Parkinson's books my mother had read so avidly the first summer. Most of these were casual allusions to visual distortions, made almost airily, as though they were a minor inconvenience. Firsthand accounts by patients who hal­lucinated on the drug treated their visions as a joke. One woman reported setting an extra place at the table for the "guest"—invisible to everyone else but her. To my mother, however, hallucinations had been no joke. She connected the term to drugs like marijuana and LSD. Making any allusion to her hallucinations would have been tantamount to accusing her of drug addiction. It is easy to get caught in the vortex of dementia. How do you tell if a person is describing a real or an imagined incident? How do you quantify the content of their conversation? Can you believe 90 percent of what they say? Less? Half? And how do you filter the fiction from the facts? Did she really misplace the prescription slip or is this merely a ruse to keep you from filling it? Did she really receive a phone call from your brother? The doctor's office? While she had still been at home, I had guessed wrong in such situations. Doubt poisoned the atmosphere, pumped up the paranoia. You hate being suspicious; she hates being accused. You contrive unobtrusive ways to check facts. She, in turn, becomes defensive and isolated. We are sitting at her dining table, eating lunch, my father and mother, our cousin Margaret, and me. Margaret is trying to entertain us with tales of her new litter of barn cats. "They get up under the house—I can't for the life of me fig­ure out where they're getting in. Half a dozen of them." "That many?" I say. "Yes. They get to chasing and carrying on. It makes a terri­ble racket." "I can believe it," my father puts in, shaking his head. My mother looks up sharply, then back at her plate. "I wish someone would do that for me." "Do what?" I ask. "Believe what I say." What, I was still wondering at the end of that first year, should be my response to the obvious fabrications of her imagination? Should I contradict her? Expose the fantasies for what they were? Should I just ignore them? Play along? What, after all, do you say to someone who tells you, quite seriously, that people are building Buddhist temples in the pines behind her house? If I challenged this account or even gently explained the out­landishness of such a claim, she first got angry and then remote. My father took the path of least resistance, accommodating her fears of invasion by propping chairs under all the doorknobs before they went to bed at night. But his accommodation did not lessen my mother's panic and dread. She continued to get him up in the middle of the night to search for intruders, then grew angry when he failed to find any. Exasperated, I took the opposite tack, steadfastly denying all her delusions. "No, Mother," I would say when she insisted the puddle I drove through was blood or seeping oil. "It's just water. Remem­ber? It rained last night." Doggedly I pointed out logical inconsistencies. "See?" I would say as we took our afternoon walk down the lane. "There's been no fire here. Do you see any ashes, any burn marks on the trees?" But my reasoning only made her keep these realities to herself. I could see that my strategy was no more successful than my father's. I searched the library, the Internet, disease newsletters for advice. Nothing. I called my cousin, the psychologist. "So what do I do?" I wailed. "If I play along, pretend there really are Bud­dhist temples down in the woods—my brother, by the way, is supposedly in on this conspiracy—if I show concern about Indians attacking the house, won't that undermine whatever grasp she still has on reality?" "Beats me," my cousin said. "I've never really had to deal with this problem. That's not my population. People in that shape generally end up in institutions." Once, as I sat on the bed beside my mother, holding her hand, she wept from frustration because I wouldn't admit there were strangers in the attic. "No one believes me," she cried. "I believe you, Mother," I heard myself saying. "It is real— real to you." And for a time I was proud of this answer. It offered affirmation if not agreement. But it neither fooled nor satisfied her. She saw through my subterfuge. Physical disabilities I could handle. And I would have laughed at the loss of mental infirmities of the merely cognitive sort—the spelling and math. Memory loss I could understand, compensate for. But her dark imaginings threatened to undo me because they undid her. They expunged the woman I knew as my mother. Defaced all that I admired and honored in her. Like most people living close to a life-altering disease, I checked myself constantly, convinced from time to time that I too had Parkinson's, even though I knew it is neither contagious nor, generally speaking, hereditary. Learning how rudimentary medical knowledge of the disease is, I was skeptical even of that reassurance. Initially, if a cup shook in my hand, if I missed a step going up the stairs, I took it as the first sign that my brain was starved for dopamine. Though I learned in time to discount these fears, what did not go away was the old vertiginous uncertainty about selfhood. If my mother, as we say, was not herself, then who was she? What was she? What, come to that, were any of us? How—by what process—do you become another self? Or perhaps no one at all? It is easy for anyone who has lived with dementia to consider demon possession a real possibility. Those Bible stories of people infested with evil spirits made perfect sense to me. They go as far as most other verbal formulations to explain what's going on: they are the anti-self, the not ­oneself overwhelming the true self. The demon theory pictures the self locked up and brutalized by marauding invaders. The medical explanation posits a self stupefied by chemical starva­tion. But whether we say dementia or demons, both terms assume that some entity called the self actually exists, that it is not simply some fancy we have invented. Some of the worst damage to my mother's brain showed up as aphasia, a loss in the ability to speak or to comprehend written or spoken language. This became more severe as the months went by. Aphasia put up enormous obstacles to our life together. I was often uncertain that she understood what I said to her. She would sometimes frown and ask me to repeat; my words either hadn't registered or hadn't been recognized. Some­times she merely turned away, as if the effort to understand was too great or the results too disheartening. Communication between my parents, never too good at the best of times, was even more difficult. My mother's voice was weak and my father's hearing poor. Many people tended to talk over her, asking a question and then not giving her enough time to respond before they rattled on, either impa­tient or uncomfortable with more than a few seconds of silence. I found little scraps of paper on the bureau or nightstand in her room with letters or numbers written on them in her by then tiny, quavering script. None of them made any sense. My father came across a letter to Ann Landers in the paper one day about an Alzheimer's patient who was helped by read­ing aloud, so he began bringing her the local newspaper to read every morning. But though my mother made out a few words, she couldn't understand what they meant. Her own speech fluctuated widely. On good days she could form short sentences, and, if we were talking about something right before us—her glass of cranberry juice or her wheel­chair —the sentences sometimes even made sense. "The phone is ringing," or "I don't want that." Often though she had to grope for an accurate word and only hit one near it in sound or meaning. "Turn off the balloon," she might say, and I'd know, somehow, that she meant the air-conditioner. "What did you have for lunch?" I would ask. ''A few steamed scrimmage," she replied. "Or something that looked like shammy." Sometimes she realized the word she'd used wasn't the one she intended, more often not. In the midst of searching for the word she meant, she would sometimes try to spell it. But the letters—never more than three—were random. "P, T, N," she might say, frowning with the effort to bring forth language. Her pronouns never had clear referents, probably because names eluded her. "Where do they live now?" she would ask me suddenly. "Who, Mother?" "You know," she insisted, obviously believing I was only pre­tending ignorance. "The people who moved." "Moved?" And I would give my usual answer to these murky inquiries. "I'm not sure." She understood all time as now, all space as here. Her men­tal difficulties were not quite the same as the Alzheimer's type of memory-loss. In fact, her memory—when she could find the language to verbalize it—was not bad. Her sense of time and space, like that of a young child, was dominated by the present. She could not juggle temporal or spatial abstractions any better than a three-year-old who asks "are we there yet?" from the back seat of the car. Trying to overcome her depleted conversation skills, she would sometimes employ metaphors whose referents were known only to her. When she had a bowel movement, for instance, she was "making little houses." Sometimes I would laugh and make a joke of her strange locutions, and she would laugh too. Those were the good days. On most days, however, she merely rambled, beginning lengthy, narratives of some fantasy trip or encounter with dis­tant family members which would proceed for a phrase or two in one direction, then make sudden oblique turns into blind alleys. The words meandered like a trickle of water across packed dry dirt, its sporadic progress gradually drying up. At such times she seemed unaware of her aphasia, evidently taking pleasure in the simple process of speech. She could keep talking for half an hour at a stretch, never suspecting that her tales were disjointed and impenetrable. All the characters were pronouns or, at most, generic—"that boy," "those people." If I was able to catch her general drift, I tried to play along, ask her questions, just to keep her talking. "Here," she'd say, pushing toward me a blanket she'd wadded into a ball, "take this to her and tell them it's all I could get done." "Okay, Mother. I'm sure they'll understand. This is all they'll need anyway." On bad days, neither I nor anyone else could make even meager sense of what she tried to mean. The sounds were no longer sentences or even words, just garbled syllables. “At night ... take shy ... wargen ... sima, sima." These unsuccessful struggles with words used to embarrass me. When she came out with a long string of incomprehensi­ble syllables and looked at me insistently, urgently, expecting me to respond, I could only stare at her. How do you tell some­one, in a nice way, that they're babbling? At some point, even pretense is impossible. When I was no longer able to follow a thread of meaning, I had to admit I was lost. "I'm sorry, Mother. I can't understand. The words aren't coming out right." Sometimes she tried again, even more urgently, but never with any better success. Other times, she simply sighed and closed her eyes and gave up. I was not sure which was worse. I mopped tears from the well of her eye socket during a conversation in which the only word of hers I understood was "lonely." There was another kind of day, too, whose category was ambiguous. It was bad in that she scarcely recognized where she was. Her words became mere cooings, half-whispered, half­ sung syllables. Yet she didn't seem upset. In fact, she could have a remarkably gentle spirit, even smile contentedly. I suspect she might not have even recognized me then. There, I think, she's gone. Over the edge. Beyond the pale. To never-never land. On those days her fear seemed to have disappeared. And I found I preferred this state. In fact, I felt a remarkable sense of lightness, of relief. Taking care of this dazed creature lying in the bed was almost like tending a baby. Irritation, anxiety disap­peared for me too. Tenderness returned. This relief, however, was short-lived. She always came back. "If she would just go away and stay away," I told Margaret. "I could live with that. But this coming and going—here one day and gone the next—it's like burying Lazarus over and over again." ~~~~~ "Losing Language" is reprinted with permission from Caring For Mother, Westminster John Knox Press, 2007. The book is available at Amazon.