Why I Write What I Write – Flash Non-Fiction Essays

          twenty minutes to lunch
          time to toilet the psycho-geriatrics

          some are wheeled to the bathroom
          then transferred to a commode

          some are helped
          into a cubicle

          one mumbles to herself

                    mum mum mum mum
                    mum mum mum mum
          and leaves wet sock prints
          all the way from her lounge chair
          down the corridor
          and into the bathroom

          for her
          the signal that it is toilet time
          is also the signal
          to wee

                    Toilet Routine
                    The New Asylum

I know a bit about dementia. Mostly the old style of the condition, some of the new, and just a little about my own. My very own.

I had intended to write, here, about my mother, who went down under the effects of Parkinson’s, but I realise now, as I take up my pen, that I need to go back further. Dig a little deeper.

There are places back there that I thought I would never need to visit again. Not ever again. Ghosts are ghosts for their own reasons, I suppose, and a good haunting is one that always finds a way to return.

I came to know what I have termed the old style of dementia in the late nineteen‑seventies. By a round‑about path I had begun a career as a psychiatric nurse, commencing with a three‑year, apprenticeship‑style training at the now long‑defunct Mayday Hills Psychiatric Hospital. This form of training had students working on the wards as “a pair of hands” while pursuing the education that was part of the course. 

A word or two are needed to contextualise the hospital for unfamiliar readers. Mayday Hills was a vast old institution, founded as a lunatic asylum in 1867, and at its peak in the nineteen‑seventies housed as many as 1,000 to 1,200 resident patients. For much of its existence it operated as a segregated facility, with male wards and staff and female wards and staff. As much as half of the institution was dedicated to what was then known, in the language of the time, as “retardation,” a broad custodial category that today would encompass Down syndrome, severe epilepsy of unknown (and sometimes known) causes, mitochondrial disorders, autism spectrum disorders, and many other conditions that were not, in themselves, illnesses that could be treated and were, I believe, only poorly understood.

On the psychiatric side, the wards were occupied by people experiencing a range of long‑term psychiatric illnesses, including chronic schizophrenia, depression, manic‑depression, and so on. Many of these conditions were of unknown origin, and treatment was fairly primitive until medications with a degree of sophistication had been developed and come into general use.

For a little more context, both my parents worked their careers at Mayday Hills. My father worked as a cook in the main kitchen and staff messroom, while my mother worked as what was known as a ward assistant — an untrained nursing staff member generally allocated to the female “back wards.” She spent long years inside that world, working thirteen-hour days and learning firsthand what long‑term institutional life meant for the women who lived there.

Included within the psychiatric portion of the institution were a number of psychogeriatric wards that catered largely for residents with some form of dementia, particularly dementias marked by extreme or unusual behaviours such as rage, aggressive outbursts, disinhibition, chronic incontinence, and the loss of social mores.

With experience and seniority, students might be placed in charge of wards and, in time, gain experience in the more acute settings where exciting psychiatry — treatment and cure — might take place. Not so for first‑year and more junior students. Placement for them was far more likely to be in one of the several psychogeriatric wards.

Wards E and A and, sometimes, the lighter relief of Ward T. Incontinence, smell, madness, and the near‑total absence of dignity.

There were around forty residents in each of Ward A and Ward E. The daily routine involved waking the patients — or residents, if you prefer; the terms were interchangeable and the wards were “home” — who were mainly “wet and dirty” as a result of overnight incontinence. Stripping bedding and bathing the residents were the primary early‑morning tasks, all to be managed around the rigidity of meal times for both patients and staff. In a thirteen‑hour day there were three staff meal breaks, each one staggered so half the staff attended first meal and half attended second. The patient meal was itself a sandwich in between.

I don’t have the fortitude this morning to describe the arrangements for bathing the residents. Whether in Wards A or E or any of the others where assisted bathing was required, the experience was grotesque.

After breakfast, patients were taken to their usual places in the dayroom. In Wards A and E, which were structurally identical, this meant large, immobile armchairs, each kitted out with a double‑folded sheet or, if fortunate, an absorbent Kylie pad, in anticipation of incontinence to come. The chairs were arranged in an elongated ellipse, each one facing out toward the nearest wall and leaving enough space for staff to pass along the outside — wide enough, perhaps, for a wheelchair to get through.

The patients were allowed to settle there while staff adjourned to the dormitory to remake the beds, find any stray areas of soiling not spotted on the first visit of the morning, and generally perform the good‑nurse illusion of making the area appear clinical and clean.
The rest of a typical day followed as periods of activity focused on toileting and meal breaks, interposed with quieter stretches in which more sedate tasks — such as receiving and replacing laundry — might be undertaken while the patients dozed in their places. In the evening a final surge of activity saw bedtime arrive immediately after the evening meal was consumed: a change into night attire, placement in bed, and a last toileting round, allowing staff time to complete their clinical documentation and rest weary feet before the end of the shift came round at 07:56 in the evening.

This is my old style of dementia — the unfeeling mundanity and routine of it. Were all of those patients suffering from dementia? I can’t really say for certain at this distance, but it amounted to my first exposure to the general condition.

There were exceptions, however.

At one point E Ward received a new admission while I was rostered to work there. A woman was admitted who required variations to routine and special arrangements to accommodate her. She was similar to others in that she needed assistance with bathing and mobility, and with eating, and she required creative interpretation to understand her attempted communications, which were largely guttural grunting or, at other times, screaming.

Her place in the dayroom was on the floor, in a bean bag that allowed a degree of tolerance for her erratic physical movements. At times she needed to be restrained in place if staff were not able to supervise her closely for any length of time.

Aged forty‑four, she had in the past attempted unsuccessfully to kill herself before her illness could achieve the same result. The condition — which we students had read about but never encountered — was Huntington’s chorea, and caring for her very nearly broke my heart.

Forty years later... 

***

          I went to him
          for exercises for my wrist
          but he spent all the time
          talking about parkinson’s

                    All Right Physio #2
                    A Fading Voice (unpublished)

Forty years later it was time to make the acquaintance of the new style of dementia. Diagnosed, named, ameliorated. Also avoided, disputed, disapproved and denied.

My mother, Magdalena, was a strong woman who spent her girlhood in a village in old Yugoslavia, her adulthood as a migrant to Australia working in a mental hospital, and her senior years slowly deteriorating. First with a bowel cancer that cost her most of her small intestine, along with her social confidence and positive outlook, and that, coincidentally, claimed the life of her younger brother in Germany at around the same time. Then, some little time later, she began to change in ways that my father, George, could cover up for a while — protectively keeping any problems between the two of them for as long as he could — but which became more evident as she began to experience falls with increasing frequency and her behaviours grew more uncertain.

Over time, her language skills deteriorated and a kind of stammer became apparent as she searched for words. Her eyes seemed to lose colour, fading in a way that reminded me of my old nursing days in E Ward. She began to resemble a person bewildered by everything, and equally afraid.

Magdalena’s falls were reminiscent of a tree being felled in the forest, occurring without self‑awareness and absent any attempt at self‑preservation. Overbalancing backward or forward with the same result. That time, bruising; this time, a broken arm. Next time, holding on to the rotary hoist washing line with one hand while hanging up wet clothes with the other.

The discovery that George felt he had to lock the doors with Magdalena inside if he had to leave the property, for fear she might wander or come to harm in his absence, was the moment that demanded formal assessment and diagnosis of what was already suspected. Parkinson’s dementia. A regime of medications to ameliorate the symptoms, and the instigation of home‑help. Referral to the local residential facility for respite and consideration for long‑term placement.

When my parents emigrated to Australia, George’s immediate family travelled together — parents, sisters, younger brother. Magdalena, though, had to leave her own family behind and wasn’t able to see them again for sixteen years. I mentioned earlier that she was a strong woman, and that is so, but she was also heartbroken and lonely for the ones she had left behind. The intervening years had also had an effect through her work with women seemingly abandoned by their families to whatever fate might await them in a mental hospital.

Perhaps it should not have been such a surprise when she reacted to her diagnosis and prognosis with suspicion and doubt, voicing long and deeply held half‑beliefs that there was a conspiracy against her and that she was about to be abandoned — locked away against all the promises she had been given. And, in any case, he — George — was more sick than she was, so why was he not being locked away too? An impasse.

But there were more falls and more misadventures. Eventually respite placement. Eventually permanent residential placement. And always bewilderment, suspicion, harsh judgements about the motivations and intentions of others. Scorn toward those who had done this to her and who should have done better.

Sometimes inattention. Sometimes not knowing who the scorn was aimed toward. Not recognising her husband or her adult children.

George joined her as a resident of the same facility before very much time had passed; his own physical frailties ensured that he could not look after his own needs adequately anymore, and they became neighbours. Often good neighbours, but not always.
Magdalena eventually passed away a couple of years after becoming a permanent resident of the care facility. She loved it there, in truth, and was well loved and cared for by the staff, but never let her guard down, always mistrusted both actions and motives, never quite accepting that she was herself a victim of the new style of dementia.

***

          “Oh!
          This is a beautiful little flower.”
          A thin voice. An older voice. Tremulous, but full of warmth and wonder at seeing a 
          special thing for the first time.
          “What is it called?”

                    The Man Who Forgot His Nancy’s
                    Unpublished in book form

And finally, there is my own style of dementia.

When I first moved to Melbourne as a young, newly minted psychiatric nurse, I worked closely with a handful of colleagues over a period of a couple of years — shift mates, bosses, subordinates. They had my back when things became tricky, and I had theirs. We made that inpatient unit sing, insofar as such things were possible.

When an opportunity arose I moved out to the next big thing in Public Psychiatry — Community Mental Health — and became attached to a satellite clinic of the larger hospital. I only needed to return to the inpatient unit from time to time, as my workload demanded. On the first such occasion I visited with a student nurse in tow, fully intending to introduce her to the unit and to my colleagues and friends there. The first person I encountered was the woman who had been my most immediate shift manager up until a fortnight previously.

I froze. Could not remember her name.

An awkward, embarrassing, almost shameful moment that cost me a collegiate friendship, there and then.

If you are out there, Cheryl, know that I remember you clearly, and I remember you well.

It is not the only time I have been unable to name people I should have known and, on occasion, I have experienced panic attacks because of it. Eventually I devised my own coping strategy of stating early in the meeting that I knew the person but had “lost” their name. It was easier to deal with the smaller embarrassment this caused than the conversational fiddling and avoidance of names that were otherwise required.

I was a young man, then. Not yet thirty years old.

Across the intervening years I have often wondered just what kind of condition could cause such a malfunction. Perhaps anxiety, but... perhaps something else.

Throughout my adult life I have been concerned to retain, and to remain in control of, my own mind. No smoked, ingested, or injected substances for me, thank you very much. The idea of losing mental control to something else was simply terrifying. The tendency to forgetfulness in the form of lost detail, occasional clumsiness, and a lack of orientational and directional sense have caused me to wonder.

Will I get dementia. What form will it take. Will I know if I have it. What can I do about it.

Now I have reached an age where I legitimately qualify as a “senior”, and along the way some of my skills and abilities have measurably diminished. Not significantly, perhaps, but I had a fall once, a couple of years back, which shook me up considerably, with the result that I walk… carefully now. I hold the rails when I go up or down stairs.

I also attempt little cognitive exercises nightly, such as completing one or more Sudoku number games to assess whether today’s reasoning and pattern‑deciphering abilities are still up to par. Equivalent to, say, yesterday.

I am not always very good at performing these exercises and often resort to rationalising: I was tired when I began and ready to sleep, or that was a simple error and not a cognitive misstep. Sometimes I simply acknowledge that the puzzle was too hard for me and resolve to try again tomorrow night. Regardless, it gives me cause to think about what is going on and what, if anything, is happening to me.

My point is that I consider the possibility of being affected by dementia every day, in an attempt at self‑reassurance which is only ever partially successful.

I wrote a small story a while back (see above) about a man who forgets the name of a much‑loved wildflower — an Early Nancy — which happens also to be the name of his wife. A grievous situation where he is distressed, while his wife is both distressed and stoic as her role changes while his dementia becomes more pronounced over time. It is no great leap to imagine myself as that man, forgetting my own much‑loved Nancies, and slipping away from myself and everyone I have loved without realising that I have gone.

Related Works
The New Asylum (2019)
Poems of a life in Public Psychiatry.
ISBN: 978-0-9751442-8-2