: Departure Gate :

By: Mandy Thomas (Pictured)

Summer 2018, Vol. 76, No. 3

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Mandy ThomasMy mother was confined to a place that reminded me of an embarkation site, where the frail residents looked as though they were marking time in an abandoned waiting room. They seemed to be about to take off on a flight somewhere, anywhere, at some time yet to be determined. They were often seated on the verandah straining their gaunt necks to see who came in through the entrance gate. On occasion patiently, sometimes aggressively, and for the most part passively, but always on the point of exodus, perpetually with a sense of expectation, before the long descent into the next phase of their journey. Yet dementia in all its forms is distinct, all these women were not carbon copies of each other, and care was never metered out in an established regular environment. It was far from this, as every woman who lived within these walls exhibited dementia in startlingly different forms.

Whenever I entered this separated universe I was acutely aware of the number of lifeless, hollow or confused eyes moving in my direction. And then one set of eyes would come to life a little. They were my mother’s. She smiled and then looked away with an impassive, wooden expression. She was emotionally disconnected, but not completely unresponsive like so many of the women here with their blank, stony faces. There were times when terror furrowed her brow, and other moments when she smiled with a warmth that she never really displayed to me through her life. A library of meanings was performed on her face, seemingly without any monitoring of herself.

Losing my mother to dementia meant my slow but deep emotional disconnection from her. Her non-responsiveness and the empty look she returned to me became the norm. Sometimes there was a pathway into the past but for the most part, in a contrapuntal movement, she was an alien even to herself. She often wanted to see herself in the mirror to adjust her hair and she would get startled when she saw her reflection. I wondered to myself - what is it like to look into a mirror but to be a foreigner in one’s own skin? Yet, in one of life’s everyday rituals, she was always wanting to see herself in a mirror. Perhaps this was because the reflection was a symbol of her former but now deeply faded persona. The observation and rumination of the self that occurs when one glimpses in a looking glass seems to represent the completeness of one’s self. Perhaps that is why she was so startled when she barely recognized her ghostly presence in the glass.

Home is never again where people with dementia feel soothed, and perhaps this is the greatest loss. They stop feeling settled in their own home and now in care, they imagine an abode, a dwelling, a domicile someplace somewhere but not here. They will never go home. If they were placed in their former homes they would never feel protected and sheltered but rather be profoundly disoriented. So, making a place ‘home’ is never quite reached, always out of touch. My mother always felt lost, in spite of there being only two short corridors out of the central living area. Always interrogating me with “Where do I go?” “Where is my room?” After I would take her there she would relax but would be desperate to leave immediately and then, after a few minutes, start again, “Where is my room?” with anxiety and despair appearing on her quivering face.

My mother was definitely the homemaker in the life of her family. She had worked for many years outside the home but she was the center of all homely activity, and the person who made feasts and celebrations come to life in our household. The food that my mother created was magnificent, and she enchantingly crafted extravagant cuisines out of the insipid and banal foodstuffs that were available in 1950s and 1960s Australia. Home permeated with aromas of fresh baking. My mother, so skilled at using her hands to wrestle dough, to blanch vegetables, to poach, to grill, to simmer and to roast, endlessly created culinary pleasures, always for the shared table of others to savor and rejoice in.

I wonder if this loss of a sense of domestic life is greater for women like my mother who was very proud of her base in the home and the atmosphere that she created for so many years. The last vestige of her homemaking was her desire to clean up mess, always picking up tiny specks of rubbish from every surface, wanting to hold a tissue so that she could wipe away dirt. One of her carers told me that my mother really enjoys ‘working’ at the facility, cleaning the place from end to end. This felt to me as if it is a tragic diminution of her magical creative abilities in making so many family events come to life over so many years. The complexity of her fabulous parties was reduced to scrubbing grunge off old tables.

I reflect on my own sense of home, and think about the work required in the ongoing task of homemaking. Home is both an asylum from the world beyond but also the representation of one’s inner self, one’s taste, and one’s sense of comfort and pleasure. It is also the place where we can invite others in to share our private lives. For the demented person there is no possibility to start new relationships, but just to sever old ones, thus the work of making a place feel like home is never realized and home no longer exists in the sense of it being a refuge from the external world and the place where friendships are forged. Being at home comes with a sense of groundedness and wholeness, but with dementia this sense of completeness is now lost forever.

A woman was calling out to me and grabbing my arm anxiously when I arrived one day. “Do the authorities know we are here?” she pleadingly questioned me, as she did with the same question to everyone else she encountered each day. Another woman always seemed engrossed in reading ‘Still Alice’, a novel about a woman who received an Alzheimer’s diagnosis at 50. Endlessly reading this book she would tell me that she had just been given a fabulous novel every time I visited. After months that same book about memory loss and despair was reread by her again and again as if for the first time, the dizzying irony of this being entirely lost in her befuddled thoughts. A former dressmaker wandered around picking at people’s clothes, finding meaning in gently searching for and discovering the loose threads. Weaving through the corridors another woman never stopped walking from dawn to dusk, always looking for something that was just misplaced, but the memory of what that lost thing was had also disappeared. These small perturbations in the lives of these women became so large that they dominated their waking hours, where the present was built precariously on a fragmented nearly lost past.

The women who could still walk shuffled through the hallways gripping pushchairs which seemed to dominate the spaces. The women all thrusted their way ahead without being able to negotiate a path around others. They blocked each other and got upset and angry. They were all frail. Even the tall solid women looked as though they could fall like ten pin bowls. A slight knock and they would be over. They collided into each other frequently. The tensions rose at mealtimes when they jostled their pushchairs to get a seat at the dinner tables.

Short-term memory loss affected every moment of the day. My mother was always hungry because she forgot that she has just eaten. When she was still at her own home she would get drunk because she would forget that she had just finished a glass of wine, and keep consuming more and more until she was completely inebriated, slurring her speech and unable to walk. The act of eating and drinking were now the main source of activity. As soon as breakfast was over, all the women were moved into another room where they were served morning tea, from where they were moved again to lunch, then afternoon tea and then dinner. Each of these meal events was painfully slow, with women chewing very haltingly, dribbling food on their oversize bibs, or not eating until they were coaxed into it. My mother was mostly ravenous, yet only ever ate tiny portions, and she was always losing weight. Her face squeezed with revulsion, and her jaw clenched after tasting some of the morsels that were placed before her. Sometimes she yelled out after her meals, “That was disgusting” and then she would smile sweetly. There was a gradual move from being polite to being brutally honest. The patina of sociality was slowly ripped away.

Occasionally Mum’s old friends from her past life would call her on the telephone, and after a few minutes she would say to them, “Look, I have to go now. I am on a panel and I have to interview a few people.” She often said to me “I work here. They need a lot of help.” It was clear that she understood what work was and this is what to a large degree constituted her sense of self. Often when I arrived at the end of the day I had to wake her from a nap she was taking in her chair, and she said “Tired! - I have been working so hard all day.” The sense of being at work provided her with a meaning as to why she was here in this place which was never home, but never quite a workplace.

When I stepped into my mother’s cosmos, unlike the pleasure of being in a child’s world, this felt a brutal distorted universe in which women were large unruly babies with deeply wrinkled skin and oversized nappies. One woman rocked in her bed calling out “Mummy, mummy” and waved her arms into the empty air. All the women wore adult nappies. Dolls were held by some of the women and this acting out of love seemed to animate them. The dolls with their waxy eyes and harsh hair appeared to be super-sized. The disintegration of the adult self was a brutal thing. Going back to babyhood could have been a pleasure but instead it was acutely painful. Rather than the comedic pleasure in being with young children, seeing one’s mother becoming childlike was not appealing – it was as if all the pleasures of small children became horribly distorted when dealing with an ageing woman with a child’s mind. When I was surrounded by many of these women in an infantile state it was like being in a baby factory that went horribly wrong. Women were threshing their arms about and moaning or calling for long lost relatives. One reached over to me, stared intently into my eyes, and in the first words uttered for weeks said, “Remember to feed the chooks before you go.” In a flash she was again back to her soft thrashing and wailing.

Tiny moments seemed to display the full aura of the condition in which many of these women lived. One woman shook so much she could hardly bring her spoon to her mouth, but she could play the piano hauntingly, with perfectly clear, rapid and distinct hand movements. From the dining table a beautiful angelic woman called out “Holy Mary, Mother of God, pray for us sinners! Jesus, son of God!” loudly, angrily, and endlessly for she seemed unable to express anything else. One woman chanted “Twinkle, twinkle, little star, how I wonder what you are” incessantly. At the same time, a woman belted out opera at a screeching high volume, with her arms flailing as if she were on stage. Another was occasionally spitting out verbal abuse with such venom that I would be startled, “Get fucked, you fucking bitches.” All these women were often together in the same room and feeding them was the only way to make them stop the hysterical noise-making.

All these aural twangs and squawks demonstrated to me that dementia is wholly idiosyncratic, that each and every person develops the disease in their own form. The demented mind becomes compulsive in areas where there was already an indication of a passion or a preoccupation. The sheer beauty of this is astonishing, that dementia will play out in emblematic ways right through to the end of life. Witnessing this magic makes the disease strangely bearable for family, who often would delight in the strange fetishes, passions or hang-ups of their demented kin, and who saw these single-track interests as reflective of the life of that person.

With every visit I made to my mother she brought a different compulsion. One week it was lottery tickets and she would painfully ask me when I arrived if I had bought her some scratch lotteries. She would scratch them to discover that she had won nothing but still want more. And more and more, until I was desperate to find a new mesmerizing obsession. I discovered that she had spent a small fortune on lotteries before moving out of her own home. On another occasion she said that the place where she lives was going to close down but that no-one else knew but her. She kept repeating endlessly “We will be forced out on the street” until I found something else for her to focus on.  When my sister asked my mother to sing happy birthday to her granddaughter on the phone, she happily sang this, but then for the rest of the day shouted “Happy birthday!” to everyone and joyously wished me “Happy birthday!” when I said goodbye. A broken record repeating herself over and over. For this is what dementia feels like for the carers of such people.

The most difficult thing for me about taking my bewildered mother to dementia care for the first time was leaving her there. Confused and perplexed that I was doing this she shrieked “I can’t believe this”, shaking her head at me in despair as I abandoned her. From that moment on she forgot that I had taken her there and deserted her. But I never forgot. All the painful moments become etched in one’s memory but they fade into oblivion in the memory of the patients.

Over time she lost her inhibitions and had no boundaries. My mother tried to talk to people who couldn’t talk back, “This is my daughter, Mandy” she told people endlessly. Often other women looked at her blankly or talked back in an incomprehensible way. Their broken minds however were still imprinted with some fractured embodied memories. Some could still remember to eat, kick a ball, and to sing. My mother remembered the taste of chocolate, and when I brought chocolate for her, a deep visceral desire took hold of her. I fed her chocolate when she became confused or obsessed. She focused on the flavor so intensely that her obsession melted away. I took to carrying chocolate with me whenever I visited her. I used it to start conversation, to end moments of anger, and to prolong moments of pleasure. Chocolate was the pathway to language, opening up vocabulary that I thought had deserted her. A delicious talisman to all the pleasures she had enjoyed in her life, “Hmm, delectable” she murmured.

My mother had shared her room with the same woman, Audrey, since she arrived, but she never recognized that she lived so closely with another woman. Audrey only said a few things that were recognizable, that she was from Canada, and that her husband’s name was James. When she talked about James, she winked and smiled coyly and referred to moments of joy with him. Sometimes if Audrey was looking unhappy all I needed to say to her was “Canada” and her face would light up and she would begin talking incomprehensively, giggling like a child, and presenting as radiantly happy.

My mother often wanted to apply makeup to her crumbling face. She was very slow and careful with this act of self-construction. A strange pride filled my chest when staff said that she always took such care with her appearance, and was beautifully dressed with an endless array of matching outfits. One day after I had applied lipstick to my mother’s wrinkled lips, she looked in the little mirror and said “I look pretty good, and I need a man”. That same day when we were sitting out on the verandah and we saw one of the husbands with his wife, my mother started chatting him up as though he could be a potential lover. Her back straightened, her eyes became coquettish and her hands expressive. She asked him “Do you work here?” and he said “No, this is my wife and I am visiting her”. This didn’t stop my mother from pestering him with questions and instinctively smiling and sitting upright trying to look her bewitching best. In the end she sighed “There are not enough available men around here!” She had been thinking that she was an enticing catch. Later, in the midst of telling her the world’s news, I mentioned that Trump would be the next president of the US, and she rapidly turned to me to ask, “Is he married?”, and looked hopeful, before I said that he was.

“Am I going home soon?” my mother asked me one day. I responded, “No, you live here”, and she looked at me blankly, not registering. Increasingly she appeared like this, a barren void, an empty vessel. At other times she was unsettled when I visited her. Often this happened when it was stormy outside. Many of the women became more anxious and confused as the clouds gathered, as if the storms represented the squalls and gloominess in their heads. On these days she asked the same question repeatedly, and I was quick to answer at first and then the more often the same question was asked, irritation set in. Finally I agreed with everything that she said, nodding like an automaton.

Other days she had trouble remembering who I was. She seemed worried and confused. People with dementia have trouble processing their thoughts and this lack of proper processing is reflected in language. Gradually there is a misplacement of a sense of self and this is due in part to the slipping away of the ability to speak. The black hole in their communication means that they are losing the language within themselves. This also affects caregivers whose language diminishes during every visit. I talked with my mother about the weather, endlessly, tediously, and in monosyllables. Dementia is so cruel that it affects the carers in ways that make is impossible to see the diminution of cognitive capability as not affecting one’s own mind, and one’s own abilities.

Those who cared for my mother were incessantly positive when we were anguished about our mothers, wives, aunts and friends. All the women were on the same rugged journey, a long downward spiral, yet the carers all offered themselves to our family members as endlessly witty, jovial, warm and engaging human beings. They were with my mother when I left her there for the first time, when they fretted over her and offered her tea. They worked tirelessly, calming those with frayed nerves, spooning food into clenched mouths, cleaning up bodily waste, and separating women who were locked in conflict – all effortlessly, willingly, and lovingly. This clear satisfaction, even joy, that the carers received from taking care of these women was so moving that I found my own desire to escape to be almost cowardly.

Saying goodbye was always a reliving of the original trauma of leaving her there. I felt compelled to leave at the same time as I felt unbearably sad. “Bye Mum” I used to say with an uplift of my mood. The sense of an imaginary world would overcome me. I made-believe that all was well. I was smiling, upbeat and always excited to see her. It was a joyous little tale I told myself and her but I was unquestionably even more glad to say goodbye. Beaming, I used to wave through the window as I walked away, much as I did when I dropped my son off to childcare all those years ago. The last image of my mother’s smiling face would stay with me for the day. But after a moment she would not even recall that I had just visited her. For that was her tenuous hold on memory. Pfft! I was gone.

When I arrived to visit my mother one afternoon she was listless and could not walk nor talk. Quite suddenly my mother had become gravely ill with the influenza virus. I rushed from nurse to nurse to make sense of what was happening to her. I sat with her for hours trying to coax water into her mouth. I yearned for her to hold on to life and to get better. Competing emotions forced me to wrestle with the possibility of her death.

I had occasionally pondered my mother’s death in the years before now knowing that people with dementia cannot access euthanasia. They tenaciously hold on to life even though they may not speak, hardly eat, and live out each day not knowing where they are or who they are with. It is entirely up to their next of kin to make decisions when they are in the in-between world of life and death. Every few weeks there would be women who had just moved into the place where my mother lived, replacing someone who had just died. It startled me to find the obviousness of the idea that this departure lounge was one where my own mother would die.

She was soon hospitalised and I stayed with her as her eyes became glassier, and her breathing more labored. I watched her sucking in air, with the rise and fall of her tiny chest as she got smaller and smaller. Days after ceasing to eat and drink, she died battling the illness, her breathing having got quieter and quieter as life was disappearing from her emaciated body.

I was beside myself with distress at my mother’s death. Every week that has passed since leads to a growing sense of an unburdening of emotional pain, and ever so perceptibly of release. Somehow in the memories of the unfurling space of my mother’s life, and in midst of the hopelessness of death I am carried along, and maintain the absurd hope that this kind of death won’t happen to me. I make a Ulysses pact with myself to deal with the uncertainty of tomorrow now in the present moment, agreeing that my life could be ended if I became like my mother. But this consent to death in advance assumes that I will be the same person tomorrow as I am today. Towards the end of my mother’s life she continued to recognize me but did not know what constituted a daughter. She was not the same person, but she also wasn’t any other person. She had wandered into a barren wasteland of lost souls. I finally recognize the folly of consenting to my own precocious passing.

After my mother’s death I came home and I began to make food, not just to prepare it but to relish in the flavors, textures, and the perfumes. It helped me to forget about the brutality of death, and of the body of my mother laying, now still, in an empty room. Stirring pots of spicy goodness, I delighted in the enmeshment of flavored essences and the taste encounters that I would be able to share with others. My mother in her life before dementia would have relished my newfound zeal of cooking. My mother was gone now, but all the joy of cooking and eating would stay forever. And although it is ephemeral food provided her an extraordinary sensory palette upon which she could elaborate different colors, odors, textures and tastes, and combine and express these in altogether new ways. “Hmm, delectable”, as she would say.

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Read the companion piece "Driving" by author Kenneth McClane.

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Mandy Thomas is an anthropologist who is presently Dean of the Creative Industries Faculty at the Queensland University of Technology in Australia. She has undertaken research both in Vietnam and Australia, and published widely on living under a communist regime, and on the migration experience. She has published poetry and short stories, as well as numerous academic books and journal articles. "Departure Gate" is her first memoir.

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