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Patricia Gillespie speaks

Patricia GillespiePatricia Gillespie is a writer and editor who has put her career on hold to care full-time for her mother, Marie. Below, Gillespie, a PhD student at the University of Melbourne focusing on aged care and elder rights, gives us an insight into the writing of her Overland 202 article, ‘[In]dignity’.

What are you hoping people will take away with them from reading ‘[In]dignity’?

I hope it would prompt the same kind of responses my thesis evoked. The responses ranged from one university staff member calling her mother after reading it and asking her how she was; to generating a sustained sense of disquiet, and another professor declaring it should be mandatory reading for those embarking in the areas of human services.

I hope that reading this story might prompt people to reconsider their views of what it is like to live as an elder, and broaden their understanding of the issues they, and eventually others, will face.

Where are you at the moment with your writing practice?

I’ve just finished writing a story about non-compliance and what that means for those whose lives are driven by compliance. It’s at the editing stage. In addition, I’m looking at pitching my masters thesis for publication.

On a fiction front, and a completely different style of writing, I’m reworking a book I drafted a few years back, Whole, based on the disintegration of a person who attempts through artifice to retain an appearance of looking well, while mentally and physically deteriorating. It was driven by reports, a few years back, about a guy who was having unprotected sex with people and not mentioning that he was HIV positive. It explores that moral territory.

Academically, I’m about to submit my ethics application for PhD research about a public housing community of elders. I’m arguing that elders can, and do care for themselves and others, and that there’s much to learn from their wisdom and life experiences.

How did you approach writing about such an emotional and personal subject?

It started out as a ‘personal’ set of circumstances, but the issues faced are much more universal and ethically grey, which is why I wanted to write about them. The subject matter gestated over several years, beginning in 2003 when Marie had a heart attack and subsequent quadruple bypass. The philosophical questions of ‘how are we to live’ and ‘whose life is it anyway?’ kept popping up as I witnessed Marie struggling to establish her life again, and in the process, mourn for what she had lost.

As a daughter, it was horrific to watch her suffer so terribly; as a carer it was alarming to see how professional care was Pez-pelleted out and its recipients made to feel dependent. As a woman, it was yet another example of the impoverished way women are regarded by some members of the medical profession.

2003 marked the start of a 24/7 journey, navigating through a Frankenstein-like system of care; rich with ‘experts’ who were continually sucking the life force out of what was left of my mother’s life, and ignoring her pleas for them to stop telling her what to do. There were endless rules and goals to achieve. Her health was subjected to metaphorical report cards, and carrots and sticks. The leisurely pace of a life chosen was replaced by a life constantly under scrutiny.

Despite being felled by illness, Marie astutely observed: ‘You are now the Big Mama, and I am the Little Mama.’ During this time, the only things I wrote were lengthy emails advocating Marie’s rights and needs – daily ‘missives’ which seeded the belief that if it was this hard for my mother to be heard, how difficult was it for so many other elders who did not have a family member or an advocate. At the time Marie, my partner and I had no privacy or personal life – it was as if we lived in a glass house where everyone felt entitled to enter at any stage and pass judgement. The day would start at 5.30am and for me, not finish until well after midnight.

Those wee hours were often spent thinking about what was happening, trying to deconstruct it in my head so it made sense. The same scenarios played out repeatedly, albeit in different configurations – the battle between the ‘patient’ and the ‘expert’, in which the body is abstracted to the sum of its pathology; the dismissal of anecdotal evidence (the how are we to live bit) and the privileging of so-called scientific ‘rational’ evidence (life in a test tube); the heavy reliance on pharmacology to solve everyones’ ills; the contempt many health professionals expressed about trying alternative, ‘less invasive’ medicine and treatments; the revulsion some medical staff had about elder ‘leaking’ bodies.

In addition there were the many assumptions that people made – that old somehow equalled being stupid; that being old resulted in being infantilised; that the knowledge an elder had about their body was dismissed. Instead the medical view of elder life seemed to focus on controlling and defining what an elder could no longer do; that somehow there would be anarchy and chaos if health professionals allowed elders to call the shots. It seemed so ludicrous, and obvious, like the Emperor’s new clothes. There was a great deal to process, and none of this made print until several years later.

I was in a holding pattern until I wrote my masters thesis, based on Marie’s hospitalisation in 2006. Until then, I had reluctantly accepted that the patriarchal medical view was the only route to wellness. But circumstances in 2006 forever changed that view. So many terrible things happened that year, under the guise of Marie’s best interests. During that time I watched a systematic and emotional decline of my mother, one that would have ground down anyone, irrespective of age, that was unbearable, arguably unethical, and unjust. It became this heavy weight that I lugged around for months, until I decided to write a masters’ thesis.

Author Michel Houellebecq in Atomised talked about the inadequacy of the biologically-driven, linear model of life, and this was something that had begun to haunt me. I was at a crossroads in my study where I had to commit to writing a minor thesis or continue with coursework, and after many years of not wanting to write about anything, I now felt I had something to say. I had a ready made subject, an argument for change, and evidence. The writing came easily – I think because there had been a long gestation – hospital waiting rooms can be melancholy and reflective places, and I’ve certainly spent large amounts of time in them, writing about the day’s experiences, crying, or staring emptily into space. They are like little pressure chambers where you are allowed to let off bursts of frustration, fear, anger, and mourn in pseudo-privacy.

The last thing I wanted was to write memoir as a form of therapy. I saw it as a form of social justice, to explore a gap in our knowledge – from an elder and carer perspective. When I wrote about these experiences, it came from a place of wanting to demonstrate the horror of becoming old and ill, losing control, and being forced to trade autonomy for help. I wanted to question what ‘best interests’ means. Originally, these issues appeared in my masters thesis as vignettes – about suffering in the Fourth Age, where I argued for an elder ethics of care.

Academic writing, by its nature, demands rigour. It was an ideal format to conceptualise problems and issues, in that it had to be looked at almost forensically, and argued compellingly. It facilitated laying bare assumptions that were made, against what is practised, and its outcomes. The story in Overland 202 is an adaptation of some of those vignettes.

Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places.

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Comments

  1. Great interview. It’s very interesting to hear the person behind the story tell the story in another and very different way. An important topic too, so personal and at the same time so inherently political.

    • Hi Michael

      Writing creates its own language, and written speech has its own lexicon. Sometimes they run parallel, sometimes, like tree roots, they spread and join up.

      Patricia

  2. Hi Patricia,
    I was so pleased to come across your article re your mother, her treatment and decline. As a writer myself I have recently completed a 1st draft of a kind of memoir of my 85 year old mother,one that documents her decline into old age – dementia and blindness. In the process I consider how other cultures do this differently and seemingly better. I also explore how various kinds of intentional communities offer a more acceptable alternative for the aged, in terms of social and emotional support, etc.
    Would love to discuss all this with you some time, if you are willing.

    • Hi Gloria

      I’ve noticed that when this subject comes up, nearly everyone I speak with has a story to share. It’s definitely a topic that many people think about. Hopefully discussions can open up dialogues, and from that, attitudinal change. Yes, some other cultures have a very different view of elder care; in Western society, the economic argument dominates the type and amount of care on offer, and the medical paradigm is very much based on controlling bodies that can no longer ‘control’ themselves. This is very sad, and must be absolutely devastating for elders who feel they are no longer the ‘same’ as other people. Care commitments and study limit how much spare time I have, which is not a great deal, so I hope you understand that I am unable to stretch time further than what I currently offer. Best wishes to you and your mum –

      Patricia

  3. Thank you rofr sharing your experiences and writing. The topic is indeed an emotive one. Many families we know including ourselves, are dealing with aging parents and how they (people after all) are impacted by their shrinking world and increasing loss of independence.

    Good luck with everything!!!

    Olga from http://revedoa@blogspot.com

    • Hi Olga

      Thank you for your thoughts. The view that we are ‘problematising’ old age, driven by a biological narrative, withers an elder’s value as a person who has desires, needs, idiosyncrasies, and a good working knowledge of how illness inhabits his/her body, a visceral and palpable understanding. The one thing I’ve learnt on this journey is that elders have much to offer – we need to find the best way to keep relationships open. I think there also has to be a much more active, participatory role by families to seek further knowledge and alternatives, and engage with elders on their views. It’s hard work, but there’s much to learn. Reciprocity, engagement, and care has to constantly evolve. Anyway, I’ll get off my soapbox now…..:-)

      Patricia

  4. Thanks for your response Patricia. I appreciate how busy you are. If my book ever sees the light of day, I would be glad of your opinions. This topic is one that affects us all and bringing it more out into the open, giving people other ways of thinking about the elderly, just might be opening up a pandora’s box, one that needs opening. Thanks and all the best with your Ph.D.

  5. Thanks for this piece Patricia. Your personal insights into ageing, death and dying reflect much broader concerns of how society is dealing with these issues. As the latest report by the Productivity Commission into aged care has confirmed older people want to remain within their own communities. Yet, home and community care packages to enable older people to remain at home is limited to 3 hours per day and nothing over the weekend. As your piece says when older people come into hospital, they are often subject to bio-medical models of care which ignore the social context of their illness and do not offer treatment models that may include discussions of what the older person actually wants. Such discussions may include death and dying and the option of community palliative care well before someone is actually going to die. Many doctors are uncomfortable with such discussions and this reflects a view that an older person’s death is a failure of medicine. This medicalised view of ageing, death and dying perhaps goes to the heart of the problems that this piece articulates. The Australian and global population is ageing. It is important as this piece suggests that these issues should be increasingly removed from medical science with its narrow bio-medical focus and taken up by community and a broader social model of aged care.

    • Hi Jonh (or John?)
      Thanks for your pithy comments. Opens a Pandora’s Box, doesn’t it?
      Norbert Elias (1985) eloquently argued that the way a person dies is not determined by their achievements and skills, but their self-assessment of how meaningful and fulfilling their life has been. In euthanasia discussion, the physical symptoms of ageing and dying – the objective signs – become the benchmark for decision-making; however the experience of ageing and dying – the subjective signs – which are equally relevant, are often ignored by critics. The four bioethical principles (do not harm, do good, justice, and respect for a person’s autonomy) are meant to work interdependently, but arguably are seen in isolation. I think this is a key issue in why elders, particularly those who are financially and socially disadvantaged, find themselves having to ‘submit’ to care, and trade or forfeit choice and control – the offer to help is often based around the needs of the provider, not the person requiring care. Shouldn’t it be the other way around?
      It’s a rigid, inflexible system, that bases its service on number crunching. It’s alarming that there have been so many reports of bad practice in nursing homes, for example, and yet people keep putting elders into homes. Elder care does require a different way of thinking. Yes, it is a highly complex issue, but it seems we keep looking at it from the same perspective – how to manage it, rather than look for what we can learn, and work with elders, not simply institutionalise and drug them. I’ve wondered what is the point of having a long life, to find that in the last few years one will be drugged to the eyeballs, possibly restrained, and be placed in a home. The word ‘home’ in that context is questionable. There needs to be more rigourous standards and checks of places which purport to assist elders. The sad thing is that at the other end of the scale – birth – we celebrate and rejoice – people still love babies, even though they require as much high maintenance as some elders. Why do we venerate one end of the life spectrum and not accord the same privileges to the other? Do we have so little regard for life, that we can ignore elder “malignant practices” (Tom Kitwood 1997) in terms of they are old, mad, bad, and a ‘burden’. There’s an elephant in the room, and sometimes it seems that no one wants to deal with it…..
      Patricia

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