Letter to the editor

Research output: Other contribution

Abstract

I submit a poem I wrote 25 years ago (1990) for your consideration for publication. On the day it was written, I sat in a country homestead and wrote about the difference between the attitudes underlying “formal” paid caregiving, as contrasted with the attitudes underlying informal home support. Retrospectively, it is clear that this beginning has now translated into my main research interest 25 years on. I recall the exact moment that I penned Shadows: A Verse for Carers. As a registered nurse, just visiting someone else’s home socially one day, I saw what I named at the time, “care without healing” — a phenomenon of caring for the body, while ignoring the individual’s right to decision-making — a core element of protecting the personhood of a person with significant, ongoing and permanent physical disability. In contrast, ethical rehabilitative care integrates a holistic recognition of body, mind and culture in providing support. The original poem has been displayed in a friend’s home ever since I wrote it and has instructed hundreds of carers in the ethics of caring from a family perspective. I wrote the poem as an “informal” carer/friend (of sorts) of a person with a spinal cord and other serious injury including blindness, watching other people look after someone I cared about. This complex interaction between the formal and informal networks of support is reflected in the poem, and I now realise that this person singlehandedly taught me more about rehabilitation principles than anyone else on the planet — a treasure of memories now, which started in that homestead 25 years ago. My close friend, who received ongoing services from formal caregivers due to his very high support needs on a daily basis, died recently, and although this poem has always been displayed in his home due to our friendship spanning several decades, it has never been formally published. I now submit it for consideration for publication in JARNA in honour of Nico.
Original languageEnglish
Publication statusPublished - 2016

Publication series

Name19
Volume19

Keywords

  • caregivers
  • chronically ill
  • home care
  • decision making

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