'He Doesn’t Even Have a Tremor: A Parkinson’s Pathography', by Linda Boulton

Illustration by Anuj Shrestha.

April 2001. A beautiful Autumn day. The sun’s rays still hold warmth; the air is crisp and clear. Our family is on a bush walk. Stephen and our two daughters run on ahead. We begin a steep incline, our feet crushing the fallen leaves underfoot. Soon Stephen lags behind. Striding ahead, I glance back over my shoulder and see him slowly negotiating the rough track. I notice that his right arm isn’t swinging as he walks. A small flutter of fear floats nearby, but I push it resolutely away. Then I remember other barely perceptible changes – the way his foot sometimes drags a little when he walks, the disturbed sleep when his body twitches restlessly in the night. Above me, the sun passes behind a cloud. The day has suddenly turned cold.

Stephen blames his arm problem on a skiing accident the previous year. He fell heavily in the snow and has suffered pain in his shoulder and bicep ever since. Chiropractors and physiotherapists have been unable to provide relief. He finally consults a GP who thinks he might have damaged a nerve. Stephen is referred to a neurologist for a nerve conduction test. It is August 2001.

The doctor performs a complete neurological examination. He runs Stephen through a series of tests to determine his level of motor function. It soon becomes clear that the cause of his problem is not a damaged nerve. Stephen displays rigidity (loss of arm swing) and slowness of movement. The doctor asks me if I have noticed Stephen’s mask-like face (I haven’t). At the end of the examination the doctor delivers “the news”. (Even now, thirteen years later, I find I am using a euphemism to describe the worst moment of my life.)

My husband, Stephen, is diagnosed with Parkinson’s disease at the age of forty-six. At the time of his diagnosis neither of us knows much about Parkinson’s. Michael J. Fox has recently “come out” about his condition, and in these moments after the neurologist utters the words to us I try to remember just how severely affected the actor seems to be by the disease. Visions of a debilitated Muhammad Ali also flash across my mind. Who can forget the image of this once-great athlete struggling to raise his arms and shoot the arrow to light the Olympic flame at Atlanta? But isn’t his condition due to too many punches to the head?

Stephen is fit and healthy. He goes to the gym, watches his diet, doesn’t smoke, drinks in moderation and is never ill. How can he be suffering from an incurable neurological disorder? Isn’t he too young to have developed Parkinson’s? He doesn’t even have a tremor.

Image courtesy Rosetta Mills.

The doctor hands us a sheet describing the condition, symptoms and treatment. On the top right hand corner of the page is a drawing of a patient afflicted by Parkinson’s. It’s an ink-line drawing, a simple outline of a middle-aged man. Yet it expresses what neither of us is ready to accept. The man has an expressionless face. His mouth is open. He appears stooped. Wiggly lines near his hands suggest a tremor. The positioning of his feet indicate a shuffling walk. His body looks stiff and slow. I wildly scan the words for reassurance: “Many people have a mild problem … if the disease gets worse, it is usually only a slow process … the disease is not life-threatening … modern drugs can do much to relieve the symptoms”. These are all platitudes to cushion the reality, to stem the panic in newly diagnosed patients.

Susan Sontag in Illness as Metaphor describes a reluctance to admit to illness because “disease itself… arouses thoroughly old-fashioned kinds of dread”. Stephen tells no one about his diagnosis. This is partly denial (if he doesn’t give it a voice, it doesn’t have to be real) but also because he doesn’t want anyone at work to know that he is sick. He’s frightened he might lose his job. So Parkinson’s becomes a secret – a terrible burden Stephen can’t share. Only close family members are told. Our two teenage daughters and I are also forced to keep up the charade, to exhibit the pretence of “normality” where none exists.

August 2004. Stephen stands outside on the front lawn in T-shirt and shorts. His feet are bare. It is 2am on a cold winter morning. He is waiting for the “orange car” to come and pick me up. He is convinced that I am leaving him. I plead with him to come inside. He refuses. In desperation I phone the ambulance, but he jumps in his car and drives away. I phone the police and they take down my details. I wait inside for Stephen to return.

He has exhibited signs of paranoia for almost two weeks. He suspects me of having an affair; he litters the lounge-room floor with paperwork looking for evidence of my infidelity. He thinks people are getting into his bank accounts and taking his money; he trusts no one. He suffers constant hallucinations. The Parkinson’s medication has caused a psychosis. I take him to the casualty ward but they sent him home. There are no hospital beds available.

Stephen’s GP finally secures a place in the neurological ward but he doesn’t want to stay. He tries to escape one night but the security guards capture him. If the anti-psychotic medication doesn’t work soon he may have to be transferred to a psychiatric hospital. When we sit together in the hospital corridor he “sees” the man from the orange car. People look at him curiously as they walk by.

The neuropsychiatrist tells me that Stephen may never work again. After ten days they send him home. He isn’t better, but someone else needs the bed.

The psychotic episode, just three years after diagnosis, forces us to confront Stephen’s illness and to tell his employer of his condition. Stephen is a teacher working in a Catholic secondary school. Initial reactions to the news are positive; his colleagues rally around him and the hierarchy seems supportive. Stephen slowly recovers from the psychosis. His drugs are changed and a new medication regime is established. Then he has to prove his ability to continue working and doctor’s certificates need to be provided. After three months he resumes work part-time, and after another month, full-time. Life is becoming more positive.

We enter a halcyon period where Stephen’s Parkinson’s is well controlled with medication. His mental state has recovered and physically he is much improved. We even go on a family holiday to New Zealand.

The euphoria lasts for nine months. Towards the end of the year new symptoms start appearing. Stephen suffers excruciating foot cramps that cripple him. He endures profuse sweating and frightening panic attacks. The benefits of the medication last for shorter periods and he requires more drugs more often. His particular type of Parkinson’s disease appears to be progressing rapidly. Although he tries to hide his symptoms it’s becoming more obvious that he is struggling.

At the end of 2005 he is called into the Principal’s office and told there is no position available for him the following year. There is no opportunity to work part-time; he has lost his job. After twenty-seven years of service (twenty-two of them in the same school) his position is to be terminated. There are no other vacancies available in the diocese.

Isn’t it discriminatory to lose a job because of a disability?

We think about fighting this action. Isn’t it discriminatory to lose a job because of a disability? Isn’t the employer supposed to provide suitable conditions for the employee to continue working, to help him in the workplace? We are told that the basis for his redundancy is not attributable to his illness, but is due to student numbers dropping in the school. If he contests the decision, he could be asked to prove his fitness to continue working. His employer could also withdraw the offer of supplementing his sick leave with additional benefits.

I am swamped by the injustice of it all, and overpowering feelings of self-pity emerge. Why did Stephen have to get sick? Why is his disease progressing so rapidly? Why did he have to lose his job?

When Stephen became ill I assumed the role of carer. I booked his doctor’s appointments, went to the pharmacy to buy his medications, ran the home and managed our financial affairs. As he became more dependent, I helped him on a more personal level. My attempts to care for him are based on my needs as much as his. I feel guilty that I am well when he is not. It is my duty and responsibility to look after him. But on a deeper level (and one I hardly dare acknowledge) I blame him for becoming ill, for disrupting the lifestyle we had once enjoyed.

Spring 2006. It is 1am. The medication Stephen took at bed-time has worn off. He lies rigidly in the bed unable to roll over. I get out of bed and help him into an upright position. He sits on the edge of the bed.

I hand him his tablets and a glass of water. A string of saliva slowly escapes from his mouth and dribbles down the front of his pyjama top. He can barely raise his arm to swallow the pills. When he finally gets the tablets into his mouth he coughs and almost chokes because the muscles in his throat are weak.

He needs to go to the toilet now, but when he stands his feet are frozen to the floor. After some minutes he slowly starts to shuffle forward but can’t make the distance to the bathroom. I help him back to the bed. His need is urgent now. I quickly pass him the bottle but relief is slow in coming.

He wants to lie down but can’t get under the sheets by himself. He is a big man and heavy to move. The best method is to push him over onto his side and then straighten his legs. He can’t get comfortable so I manoeuvre his hips back, his shoulder forward then place one leg on top of the other. I pull the sheet and blanket up to his chin. The quilt is too heavy and he can’t move under its weight.

3am. He wakes drenched with perspiration. He can’t regulate his body temperature and pools of sweat stain the sheets. By 5am he feels the familiar agony of nightly foot cramps. His toes curl under like claws, contorting his feet into impossible positions. The only relief he will get is from more medication.

6am. At last, time for the next dose of tablets. He lies in bed waiting for them to take effect. After almost an hour they’ve kicked in and is able to get up and move freely. Right on cue the dyskinesia begins. His legs twitch incessantly, constantly on the move. But it is a small price to pay because now his Parkinson’s symptoms have disappeared and he is able to function normally. He has breakfast, showers and dresses, all tasks that would be impossible without the drugs on board.

The respite doesn’t last long. As the medication wears off, his Parkinson’s symptoms return. He becomes increasingly anxious, his chest tightens and he feels as though he can’t breathe. Sometimes he begs me to ring the ambulance because he is convinced he is having a heart attack.

I give him an injection of Apomorphine, a fast acting “rescue” drug that will give him relief in under ten minutes. His body relaxes. The injection will keep him mobile until his next lot of medication. He is allowed five injections per day.

After Stephen retired from work, we were advised that he would be eligible for government assistance. I had never entered a Centrelink office before submitting Stephen’s claim for the Disability Support Pension (DSP). When I arrived the queue was so long it had reached the front door. I looked around hoping no one would see me go in. I held a preconceived idea about welfare recipients – that they were all lazy “dole bludgers” or single mothers with numerous children in tow, benefiting from the taxpayer’s hard earned money. I didn’t want to be dependent on the government for support. I had resented filling out the forms that demanded to know our personal, financial and medical details. I also didn’t want Stephen to carry the stigma of being “disabled”.

Despite the severity of his symptoms and the dramatic fluctuations between his “on” and “off” periods throughout the day, Stephen was rejected for the DSP. Centrelink was not convinced that Parkinson’s disease was affecting his capacity to work: “A decision has been made that you [Stephen] are not eligible for DSP because you are able to work 30 or more hours per week within the next two years. In making this decision we took into account your skills, qualifications, work history and the medical evidence you and your doctor gave us. You may, however, be eligible to receive the Newstart Allowance or a Low Income Health Care Card”.

It seemed incredible that Stephen had been refused but when we spoke to an advisor at Centrelink she told us that the doctor had not provided enough detail in his report and that Parkinson’s disease was a grey area because the rate of progression and presence of symptoms varied so widely between patients. “Saying that Stephen has Parkinson’s is not enough,” she said. “You are dealing with a government body now.”

After a more comprehensive evaluation from Stephen’s neurologist and an interview with a job capacity assessor at Centrelink he was finally granted the DSP. I was forced to reconsider my opinion on welfare recipients, to understand that some people require assistance from the government and to accept that our need was also justified.

January 2007. We have come to Hawks Nest in New South Wales for our annual camping holiday. Stephen sits on the beach soaking up the sun. He has just been for a swim and drops of salty water still cling to his skin. I have been watching him in the surf as he effortlessly catches the waves. I notice his relaxed body posture and marvel at the fluid ease with which he has run along the sand.

Last September our family attended a fundraiser, a benefit night organised by fellow teachers to help pay for brain surgery to treat Stephen’s Parkinson’s. Two-hundred-and-eighty friends, colleagues and ex-students attend. It is a night filled with fun, love, laughter, tears and hope.

It is not a cure and the illness will still progress.

In November 2006 Stephen had the Deep Brain Stimulation (DBS) operation. Two leads were placed deep in his brain and attached to wires that led down to a pacemaker in his chest. The pacemaker sends an impulse to the brain stimulating targeted areas. This treatment helps control the symptoms of Parkinson’s disease. It is not a cure and the illness will still progress, but for now it provides relief.

Image courtesy Rosetta Mills.

Stephen responds well to the surgery. His walking improves and he needs less medication. The debilitating foot cramps disappear. He is able to get in and out of bed on his own and roll over in bed without assistance. He no longer has any “frozen” periods.

Still, he expects more. He feels the operation hasn’t helped enough. He wants the impossible – a return to normal. Medications are gradually increased and he has hospitalisations to tweak the settings of his brain stimulators until the optimum levels are reached. The doctors can do no more. We learn that Stephen suffers from an emotional as well as a physical “on” and “off” with his Parkinson’s. The medications cause an unnatural high. He becomes too happy, too energetic, too driven. Then the pills wear off and he becomes flat, unmotivated, depressed.

I adjust to my husband’s behaviour. But the neurologist thinks there is a problem because he sends Stephen to a neuropsychiatrist. Stephen goes unwillingly; he has always hated shrinks. The doctor is a short, softly-spoken, kind man. I like him but Stephen doesn’t. The doctor orders a memory test. Stephen fails.

The doctor is tactful, subtle even, about the failed test. He tells us there is some memory impairment and that Stephen might find it hard to acquire new skills. Stephen becomes angry and leaves the room. “I’m not sitting here having you tell me I’m losing my memory,” he fumes.

The doctor leaves me on my own to digest this latest news.

Why have I not noticed a problem? I remember the barely cooked potatoes he’d tried to mash for dinner and his inability to work the microwave. I remember the way he couldn’t replace the washer on the tap, a job he would once have easily completed. I think about his difficulty finding the right words and his sentences becoming harder to understand, crazy sentences we both laugh about.

We drive home from the doctor’s appointment in silence.

September 2008. The doctor palpates the fluid-filled lump on Stephen’s head. It’s a blister that has risen on his scalp and everyone is worried. The lump sits right on the wires in his head, a sinister sign that suggests infection. We are in Sydney at North Shore Private Hospital and the neurosurgeon, neurologist, and now the microbiologist have all had a look. Pathology results come back negative, but intravenous antibiotic treatment is prescribed as a precaution.

October 2008. The lump is still there. The neurosurgeon sits behind his desk and drums his fingers on its polished surface. He has palpated the spot again. It remains unchanged but there is high risk that the skin may break down. The doctor is undecided about what to do, and has rung his colleagues. Should he operate to remove the lump, or should he leave Stephen on lifelong antibiotics to protect the wires? He decides to operate and papers are signed. I stare out of the window at the panoramic view of the Sydney CBD.

December 2008. The neurosurgeon takes Stephen over to the window to have a good look at his head. It’s now six weeks since the lump was removed. As he parts the hair we both see it: a new spot has appeared. It’s filled with pus and I’m filled with fear. This new spot is smaller, but it’s more angry-looking than the first. We are told to contact the doctor immediately if any pus comes out. The doctor warns us that surgery to remove the DBS wires and pacemaker is likely now. The plan is to re-implant the leads when the infection has healed. Two weeks later his skin breaks and I see the wires in Stephen’s scalp, like thin metal worms crawling across his head.

January 2009. Stephen undergoes brain surgery to remove the DBS hardware.

Without the benefit of the brain stimulation it becomes clear just how much Stephen’s Parkinson’s has progressed and how much his physical and mental condition has deteriorated. In the days and weeks following surgery Stephen becomes increasingly unwell. He loses weight. He falls into a devastating delirium. He suffers constant hallucinations and is continually agitated. He is unable to hold conversations or concentrate on the television. He is frequently incontinent. He sits in his chair beside the bed staring at the ceiling, his mouth opening and closing repeatedly. His doctors are as horrified as we are and warn us that further surgery will be impossible if his mental state doesn’t improve.

I am staying with a relative in Sydney and do not have to commute back and forth from our home in Newcastle. I spend long days at the hospital and soon I develop a routine. I arrive at 7:30am to ensure a car park. Then I walk down to the oval and sit on a park bench until visiting hours start. I watch the personal trainers go through their paces with their clients, the early morning joggers, and the workers walking from the hospital car park to their offices on the highway. I go for long walks through the suburban streets breathing in the cool morning air before the heat of the day drives me indoors. Sometimes I catch the bus to the hospital. When I leave in the evening I share the bus with strangers, commuters who are accustomed to the hustle and bustle of the peak hour rush and the Sydney traffic. I am surrounded by people but I have never felt so alone. After three weeks, Stephen is transferred back to a Newcastle hospital.

February 2009. It’s lunch time when I arrive at the hospital. I’m feeling guilty because this morning I have arrived later than usual after having coffee with a friend. I walk down the long corridors with the familiar feeling of dread. How will he be today? Will he be settled or agitated? What kind of night did he have? I am constantly struggling with mixed emotions. When I am with him I don’t want to leave because I know my presence calms him and I have some measure of control. When his medication is overdue I can find a nurse to give him his pills. Don’t they realise how important it is for him to have his medication on time? I can take him for long walks when his agitation is high so that he doesn’t have to spend all day cooped up in the ward. Sometimes I see the relief on the nurses’ faces when I arrive and then I know he’s been difficult.

Sometimes I can’t stand being in the hospital. I feel the walls close in on me. I hate the smells, the noises, the other patients. At one stage Stephen is staying in the Stroke Unit where patients require intensive care – not because he’s had a stroke, but because the unit is closer to the nurses’ desk and they can keep an eye on him. An elderly woman lies in the bed across. On the nameboard above her bed, someone has written “Beautiful Betty”, and it’s obvious why: she is sweet and gentle. One day she looks across at me and says, “Don’t worry love, he’ll be all right.” Her words are comforting, her tone, motherly. Soon, Betty is moved to another room. I miss her.

Entering the ward today I find Stephen sitting just inside the door of the room. He is strapped to the chair and is wearing a nappy. He is in full view of the passing public. I rush straight to him and bend down to his level. He whispers that he needs to use the toilet and I run back down the corridor looking for his nurse. She tells me Stephen was uncooperative this morning. “He wouldn’t have his blood pressure taken or have a shower,” she explains. I am furious and want to know why he has been restrained. “Sometimes they settle down if you give them some quiet time,” she tells me, as though he is a three year old having a tantrum.

The nurse bends down and unties the restraints and I can see that he is rigid in the chair. “How long has he been sitting here?” I ask, and she tells me since 8am. It is now after midday. His lunch is sitting on the tray, untouched. I cannot bear to look at the nurse or speak to her, so I find some pants for Stephen, help him get dressed and take him to the toilet.

Later, he eats his lunch. I can’t face food, and am sobbing quietly when a young blonde nurse comes to sit with me. “That shouldn’t have happened,” she says. “This is a neurology ward and we know patients have these kinds of problems. We should be able to handle it.” Her concern is genuine and her kindness touches me, but doesn’t dissolve my anger and grief over seeing Stephen in such an undignified position.

I draw the curtain and we both climb onto the narrow hospital bed. We’re cocooned there, hidden from the other patients. If I close my eyes I can pretend we’re not in a hospital, that Stephen isn’t sick, that I didn’t witness his degradation. We lay side by side and I am quietly weeping. The tears will not stop.

The neuropsychiatrist suggests a drug called Aricept and the delirium lifts. Stephen is back in touch with reality. He laughs again, teases our daughters, jokes with the nurses. Another deep brain stimulation operation is planned. This is his best chance for good quality of life, we are told. Stephen wavers, I waver. Should we go through with it again? The doctor puts the papers in front of us. Stephen signs.

“You’re not my wife,” he tells me.

The operation goes well and the medical team is confident that they have re-implanted the leads in exactly the same spot as before. Stephen wakes up in intensive care and accuses me of being an imposter. “You’re not my wife,” he tells me. “You just look like my wife.” His voice, deep and gravelly from the anaesthetic, cuts through the beeping monitors, shooting straight to my heart. The doctor tells me not to be concerned or offended, that this will pass. A friend tells me this is my chance to hotfoot it out of there.

I bring Stephen home two weeks later. The strange post-operative behaviour has settled but something is clearly wrong. He is not the fun-loving man we all know; his personality seems to have undergone a major change. He is subdued and quiet, and can’t stay awake past 8pm. He is incontinent at night. His medications cause constant drooling, his speech is confused, the psychotic symptoms persist. The doctors say it will take time for him to recover. Instead, he deteriorates.

August 2011. Stephen is admitted to Morisset Hospital. Morisset Mental Home. I flashback some fifty years to my childhood, to stories of crazy patients thrown into the “loony bin”. Offbeat behaviour in our home would sometimes be met with the joke, “Watch out or they’ll lock you up at Morisset.”

As a child I once visited the Morisset Hospital grounds – it was for a picnic with my ballet group and I still have a black-and-white photo of that day. I remember the day and the photo because there is a little dark-haired boy in the group shot, maybe six or seven years old, the brother of one of my ballet friends. He is wearing shorts and a V-neck jumper and sports a short-back-and-sides haircut. He’s a skinny boy with knobbly knees and freckled skin. In the picture he is eating an iced cupcake while his mother sits on the tartan picnic blanket beside him, talking to her friend. Just a few months later he drowned in a drain in Cardiff, swept away while playing in the flooded canals that run through the suburb. The film in the camera was developed after he died and seeing him in the photo made the horror of his death even more real and present. The photo showed a little boy on a picnic having fun. How could he be gone? How frightened he must have been as those cold waters dragged him under. How desperate his mother must have been when he didn’t come home. I clung to my own mother, scared of what could happen in a split second, when a child could be swept to his death, away from his family and the living world.

Now I am entering hospital grounds again, only this time it is with my husband. He is coming to the neuropsychiatry ward for treatment of his psychotic behaviour. Stephen has been suffering from delusions, hallucinations and agitation for two years now. Previous anti-psychotic medications have adversely affected his motor function, increasing the rigidity and slowness of movement and decreasing the benefits of the Parkinson’s drugs. The doctor assures us the new medication is less likely to have these side effects, but the drug is restricted and carries specific regulations. Stephen will have to be hospitalised so careful monitoring can be implemented.

Morisset Hospital is an option only when the private hospital system rejects him, claiming his needs are too high. A nurse from the private hospital rings to ask about Stephen’s condition. I explain that he has both physical and cognitive impairment and has little insight into his problems. I also tell her that he would need a secure area. The nurse is blunt. “We have an open ward here,” she says. “It’s not locked and we only have three nurses for twenty-six patients. Is your husband independent? He needs help with showering? He’s incontinent? Confused? No, we can’t manage him.” So, Morisset is the only option and I need to let go of the long held stigma and fear attached to the place. I feel my heart pounding as we drive in through the gates and begin the four kilometre drive through bushland to the main entrance.

As we near the hospital the bush gives way to open grassland where kangaroos lay sunning themselves, an unexpected carpet of furry brown bodies. This sight is so surprising we pause and take it in, marvelling at the spectacle. Now we pass buildings, old brick houses, some dilapidated with broken barred windows, some functional. More buildings emerge as we slowly drive on and these, too, appear neglected, a relic from days past. When we turn the curve we see a group of men approaching, a motley crew of four or five, they’re accompanied by a minder. I am driving slowly in a wide arc to avoid them and I try not to stare. As I pass, one man stands out, the leader of the pack. I notice that his tracksuit pants are too short, or is it because they are pulled up under his armpits? His T-shirt hangs off one shoulder. He has a basin haircut and his tongue lolls. He looks grey. Grey shirt, grey pants, grey skin. Institutionalised. I think of One Flew Over the Cuckoo’s Nest , and then the minder, whose gaze has been averted, suddenly catches my eye. I smile, then see his relief as he smiles back and there is compassion and understanding between us – he with his charges and I am with mine.

The hospital grounds are expansive and sweep down to the lake where the remains of an old fenced-off swimming pool jut out of the water at odd angles. The sun beams down on the water and the ripples glitter like diamonds as they wash ashore. We follow a narrow winding road that traces the foreshore before turning and driving up a gently sloping hill. A group of kangaroos hop across the road, some with joeys in their pouches, their heads poking out of their warm cocoons. An old male kangaroo with massive forearms stands grazing at the side of the road and looks up as we pass by, unperturbed by our intrusion into his territory. On our right a church graces the hillside, its stained glass windows shimmering in the sunlight. It is neat, well maintained and clearly still operational as a sign on the wall says, “Friday Service at 2pm”. It is an incongruous sight, this pretty little church standing in isolation on hospital grounds where so many buildings have fallen into disrepair and decay.

Kaoriki House, where Stephen will be staying, stands on the crest of the hill, a low, flat building with manicured lawns. The windows are covered with security grilles but at least they’re not barred. A sign near the front door asks us to ring the bell (“Please press for one second and repeat if necessary”) and a nurse jangling keys appears a few moments later. We’re ushered into a wide hallway where a balding man ambles up, cricket magazine in hand. “I’m Tony Lock,” he announces. “I used to play professional cricket.” He flips through his magazine and adds, “I’m fifty-two, I don’t look it do I?” He shuffles away without waiting for an answer, oblivious to us, his surroundings, or the real world. I hold Stephen’s hand tightly – what must he be thinking? I remind myself that the doctor has recommended this treatment and that Stephen has agreed to try it. I utter a silent prayer. Please let him be safe here. Please let the medication work.

The doctor is not ready to see us yet, so we are led to an open area where a laminex table and chairs occupy centre stage. A kitchen bench and sink takes up the length of one wall. On the opposite side are windows and a door that opens out onto a courtyard. The linoleum floor underfoot shows dirty patches, the sticky residue of spilled drinks and food crumbs. Long corridors veer off this main area leading to sparsely decorated bedrooms. Another door opens onto a lounge room, resplendent with a plasma TV, lounge chairs, a piano and pool table. One wall has shelves that contain books, videos and games. The nurse who shows us around apologises for the décor. “It’s old and basic,” she says, “but the care’s good.” She leaves us then and we are on our own.

Two inmates look up from the pool table. One is tall and angular, the skin on his face pulled tight across his cheekbones. His hands are shaking. The other is shorter and covered in tattoos. We eye each other, the veterans and the novices. A woman sails by, muttering to herself. Her long hair is pulled back into a tight braid, her face expressionless. A young man, much younger than the rest, paces up and down the corridors, in and out of rooms, restless and troubled. He looks tired, his eyes are puffy and his tread is heavy. I avoid eye contact, disturbed by his unsettled look. On the sofa sits an older man who yells out intermittently. Sometimes he laughs maniacally. He is slim and well dressed and has piercing blue eyes.

From outside come the strains of Elvis Presley’s ‘Jailhouse Rock’. The same balding man we met earlier comes up to us, CDs and Elvis book in hand and says, “Elvis was a great man wasn’t he?” It is a statement, not a question, and he is standing very close. A string of saliva escapes from his mouth and dampens the front of his T-shirt and spots of spittle spray as he speaks. “I’m Elvis, I’m a great man aren’t I?” I nod in agreement, hoping he’ll move on. I’m eager to escape his crazy babble but there is no way of avoiding him. To my relief, the nurse comes back to announce that lunch is ready and we are led into a dining room where tables are set for the meal. The patients line up cafeteria-style for their food which is served by a young woman wearing a pale green blouse, black pants and tightly fitting cap. There is something strangely discomforting about seeing Stephen standing in the queue and I lean back against the wall, silently observing this first step into institutional life.

After lunch, the occupational therapist shows us to Stephen’s bedroom. The room is bare except for a bed and cupboard. I unpack his clothes while the occupational therapist works out the best position for the bed. I warn her that Stephen will need help rolling over and getting out of bed. I have a mental picture of him lying awake, unable to move, but she promises me that the night staff will check on him regularly. She hands me a couple of rubber-lined towelling pillowcases for when he comes home. Drooling is one of the side effects of this new medication. I shudder.

Finally, we are ushered into a small office where the heater is on and the room is too hot and stuffy. The doctor is at his desk and explains the treatment. Stephen will start the medication tomorrow to control the hallucinations and disordered thinking that have been troubling him. The protocol includes an increase in the medication every few days, daily observations of his temperature and blood pressure, and routine weekly blood tests that will continue after he leaves hospital. The doctor is casual and relaxed, while we are on edge, uncertain, anxious.

Now, the moment I have been dreading – leaving. My heart starts racing in anticipation. I hold Stephen in a tight embrace, my head resting on his chest. It is the same embrace we have shared for more than thirty years. It still holds comfort; it still reassures. Will he cope with this separation? Will I? We draw apart and I start walking down the endless corridor. The paintings on the walls blur as I hurry past. I turn once and see him, a lone figure, his arm raised in a silent wave. From the distance I hear a voice calling out.

“I’m Jesus Christ. I’m going to save the world…”

The new medication affects Stephen’s Parkinson’s symptoms. I notice a worsening on the first day of treatment; I can tell the moment I see him. I ask questions of the doctos, I voice my concerns. The protocol continues as planned. He comes home four weeks later on 100mg.

When Stephen starts lurching, his body bent double, I contact the doctor. He reduces the dosage to 50mg. When Stephen shows signs of seizure activity the dosage is reduced to 25mg. The hallucinations continue.

I soon become an expert on Stephen’s condition. I know his body better than my own. I recognise when he needs more medication and when he needs less. He ingests a heady cocktail of drugs daily. Sinemet for mobility, Clozapine for psychosis, Exelon for cognition, Citalopram for depression, Fortisip for nutrition, Osmolax for elimination. The medications are finely tuned, the balance between treating the physical and the psychiatric symptoms difficult to get right. No two days are ever the same.

March 2012. “Lost”. He has written the word twice, on my shopping list, under the reminders to buy juice, bread, bicarb soda, peppercorns and rubber gloves. I recognise Stephen’s spidery handwriting with its long loops. The top word is well formed, the second frail and wavery. I’m surprised he can still write and even more surprised he can still spell.

I have been out much longer than planned. When I return I find him wandering the house half undressed. He has taken his socks, shoes and shorts off and I see he has taken a clean T-shirt out of the drawer and has laid it out on the bed. He can’t tell me why, or why the washing up detergent and scourers are in the fridge.

After I help him dress we stand in the kitchen and look at the shopping list. “Why did you write lost?” I ask. “I thought you were lost,” he says. I see the bemused look on his face and realise we are both lost. He flounders in a sea of confusion and delusions. I am drowning in an ocean of fear and uncertainty, constantly engulfed by waves, always resurfacing to catch my breath.

The doctor says it is dementia, probably with Lewy bodies. I can hardly breathe. Wasn’t Parkinson’s enough? Now dementia too?

Stephen can no longer hold a conversation. He can’t read the newspaper. He can’t work out how to turn on a tap. He has trouble recognising objects. He looks out of the kitchen window and tells me he can see two cats playing golf.

Sometimes I yell at him.

I wash wet sheets daily. I wipe the excrement from the crevices of his body. I shower and dress him. I clean his teeth. I chop his food for him. I help him into and out of the chair, the bed, the car. If he falls I help him up off the floor.

Sometimes I yell at him.

May 2013. We are sitting on a bench at Nobby’s Beach. Stephen is eating an ice cream – a vanilla Heaven, his favourite. It’s a beautiful afternoon, unseasonably sunny and warm for May. The ocean is as blue as the sky and a young family is paddling in the shallows, the children shrieking with delight as each breaking wave dampens clothes. A grandmother with two little girls pad past on bare feet. An enthusiastic pair of young joggers pound the pavement, tanned and fit. A group of young mothers push prams in the idyllic sunshine.

I see a couple approaching, a husband and wife. They are arm in arm but I notice that his gait does not quite match hers. I detect a slight shuffle, and as they come closer I see a blank look on his face that is only too familiar. The woman is greying but is dressed youthfully in a skirt, top and sandals. Her husband has on long pants, shirt and jumper. He has a moustache, neatly trimmed, but he has a slightly shabby look about him. I wonder if she argued with him this morning about what he should wear or whether he feels the cold despite the warmth of the day.

They pause to have a drink from the bubbler, she first, then he following after. As they walk past our bench she is smiling and chatting to him comfortably, keeping him stimulated and in touch with his environment. His face carries the expressionless countenance of a patient suffering brain failure. I know it instinctively and it is on the tip of my tongue to say something to her because I see that she and I are travelling parallel paths. I want to tell her that I know. But I say nothing because she is totally engrossed with her charge and her serene exterior suggests a peaceful acceptance that I do not yet possess. They walk on, and she shepherds him across the road to the car park. She stops momentarily to read one of the plaques that provide historical information for the area, and, from a distance it looks as though he, too, is absorbed. Then they disappear from sight.

Stephen and I are separated now by the demands of his illness. He lives in an aged care facility on the shores of Lake Macquarie with twenty-nine other sick and frail residents. He is fifty-nine years old.

I visit daily, often twice a day. Sometimes he asks to come home, and I long to bring him with me. The guilt is overwhelming. But a small hard part of my heart always says “No!”, that his condition is too much for one person to handle.

Centrelink says I am no longer his carer so the carer payments stop. Centrelink says I can now apply for Newstart.

I am not sure how to end this story. Writer and social anthropologist Unni Wikan suggests that endings aren’t important, that good stories can be made from good beginnings, that endings are just “what then happened”.

What is still to come? Certainly Stephen will become sicker; Parkinson’s disease is a progressive and degenerative condition. While the brain stimulation has helped Stephen’s mobility, it can do nothing to relieve his debilitating cognitive problems. Sometimes I pray for some other form of release: a heart attack? a stroke? cancer? It’s possible, but unlikely. Apart from his Parkinson’s, Stephen is a healthy man.

Maybe something will happen to me, instead. Maybe I’ll be the one struck down – carers often are. When I feel a tingle in my hand I wonder if it’s something neurological. When I have a pain in my back I expect the X-ray to show bone cancer. I am now accustomed to the probability of illness. It is what I have come to expect. It is now a way of life, of living.

Stephen faces his fate with courage. He never complains. Perhaps the disease that has taken so much from him also protects him from knowing the full extent of his loss. I, on the other hand, am not brave. I am filled with fear. I weep. I rail at the unfairness of it all.

Whenever I take Stephen for a walk, I punch the security code into the gate of the care facility and lead him out by the hand. We navigate the grassy slopes behind the home and follow the path down to the waterfront. Today, the lake stretches out before us, a glassy expanse mirroring the clear winter sky. We sit briefly on a park bench, until a familiar restlessness propels Stephen up out of his seat. I follow him down to the jetty where a row of cormorants perch drying themselves, their wings out-stretched, their backs to the sun. Then, as one, they take flight. I watch until they disappear beyond the headland, but Stephen has already turned and started walking back up the path.

Christmas Day 2013. We are gathered in front of the television, our daughters, their partners, Stephen and me. We are watching footage of our wedding day. It’s a grainy 40mm film – no sound, just images captured in time.

Someone films us as we leave the church. I am wearing an elegant ivory gown, lace-edged and pearl-encrusted. Stephen stands straight and tall in his beige suit, ruffled shirt and maroon bow tie. He places his arm protectively around my waist and I gaze up at him adoringly. We pose for the camera, our smiling faces radiating through the years. I look calm and poised, Stephen happy and proud. We are young, vibrant, healthy and whole.

This piece originally appeared in The Lifted Brow #24: The Medicine Issue.

Linda Boulton is studying a PhD in English at the University of Newcastle and is writing a carer memoir.