Love Life Loss – A Roller Coaster of Poetry Volume 2 : Days with Dementia

love life loss v2 coverWhilst I have been too unwell to work, study, or do anything much of any real usefulness for the last couple of weeks, various things have been happening behind the scenes, the product of past work. My second volume of poetry arrived, quite unexpectedly, in the mail this last week, and is already available online. The image here is the front cover, and although it is not hard back, like my first self published volume, I’m very happy with it. I’m also happy to say, although restricted to rest for at least another week, I am slowly recovering, but I did want to my news!

Amelia Walker, now a dear friend who I met when we studied poetry together in our BA, who even then was a published poet, and has since gone onto get her PhD in poetry, wrote the most beautiful forward for this volume, which I am sharing here. I was overjoyed that she would even agree to read my collection, but then also agreed to write something for the book. Her poetry, in contrast to mine, is truly world-class, and although I am very happy with mine, do know they are not anything startling, other than a true expression of my life and feelings.

This book is available online now through The Book Depository, but will also be available via Amazon and other sites soon as well. I have more news to share in this department very soon!

Foreword for Love Life Loss: A Roller Coaster of Poetry Volume 3: Days with Dementia, by Amelia Walker PhD

“The first time I met dementia, and knew it by that chilling name, was on a youth group excursion to a nursing home when I was fourteen. The shock and anguish of that day was such that it drove me to later become an aged care attendant, and then a nurse, working for a total of seven years in hospitals, nursing homes and community-based health care. Of the many strange sights, sounds and other sensations of that first, life-shaping encounter, I recall most strongly the eyes – steely blue-grey – of a woman who sat and muttered, on endless shuffle replay, “I can’t believe it! The nerve of them, sitting there at that beautiful piano – with sandwiches! Dropping Crumbs! Getting crumbs in the piano!”

There was no piano and no sandwich eater. The nursing home staff simply rolled their eyes and shrugged. Some even snickered or made jokes among themselves. At the time, I thought them heartless. Years later, after fleeing the system I had longed so deeply to change, I would at last understand. Their behaviour was a coping mechanism, for those who work in institutions of containment are as much contained and driven by their circumstances as are the formally institutionalised. They could not see, hear or otherwise sense what was for me, at fourteen, so painfully clear: the woman in the wheelchair was reciting poetry. By which I mean she was telling truths in a language that can seem anathema to logic, but which, for those willing to stay a little longer and think a little harder – as well as more loosely – can become its own logic, a finely-tuned system for understanding and engaging in the scenarios of this world.

Through the poetry and by the logic of that woman with her blue-grey eyes – eyes clouded, I later learned, by cataracts behind which she must have floated like a diver with a fogged mask, uncertain of up, down or indeed whether the shapes before her were coral reefs, wheelchairs or musical instruments – “crumbs in the piano” was a perfect metaphor for that awful place, for the absurd acts and attitudes it bred. The piano was her mind. It was all the minds of all her fellow residents – all of the lives, drives and passions contained in those more-than bodies left shoved in corners, once-loved instruments gathering dust, out of sight, out of the way of those with ears unattuned to the myriad melodies shattered and silenced by this callous way of treating human beings. That callousness was the sandwich and its crumbs – the thoughtless disrespect for the secrets in beings that may appear, at a blinkered glance, hollow boxes closed to and from the world, but which actually bear the most intricate of workings, and which can, via a gentle touch and lots of patience, still offer music, colour and truths of the kind this world most desperately needs to hear.

We need to listen. And crucially, we need to ditch the sandwich – I mean the widespread disrespect and disregard not only for the elderly but for all who shatter or strain the hegemonically-defined moulds our society problematically equates with youth, health, mental capacity and thus valid personhood. In its current state and with our current ways of doing things, Australian society is a piano filled with crumbs, a system in which nearly all keys stick. Of the many systems within this system, our healthcare must be among the crumbiest – by which I mean poorly-funded, yes, but also riddled with attitudes and practices presently demanding overhauls. However, as my failed career taught me, such overhauls cannot be enacted by any one individual, and probably can’t succeed if attempted purely within healthcare without address to the bigger picture: small and momentary changes can happen this way, yes, but protocol tends to thwart or re-direct any attempt at broad-scale shifts; over the course of exhausting years, those who attempt to change the system are usually, in small-to-large ways, changed by it (or else we quit). What is needed is a complete revision of the cultures that drive healthcare protocols. These cultures include, I believe, not only those of healthcare, but all those collectively forming that formidable beast known and unknown as Australian Culture. We must dismantle the normative delusions that are the veins and sinews of that beast (for instance, the deluded belief that a silent piano contains no strings and offers no music, that a person with dementia should be shut away, that they have nothing left to offer).

Thank goodness, then for Kate Swaffer’s new poetry collection, which signals all the grim issues I have just described, and which – unlike the bleak-if-true portrait I have just painted – does so with humour, light and optimism. For these are poems about more than just “days with dementia”. They are poems, as the title signals, about love and life brought to focus through loss. They are the poems of a woman who has lived, and lives, a rich rollercoaster of experiences. Kate is another former nurse, keenly aware of the health care system and its need for change. She is also a published author and an academic who holds a Master’s of Science and recently commenced a PhD. Furthermore, she is a disability rights activist, a mother, friend, traveller, cat-lover, social butterfly, and someone who, in the midst of study, work and living life to the hilt, received the shock diagnosis of younger-onset dementia. As Kate’s poems detail, this news changed her life. But not as her first doctors predicted. Instead of retreating into a shell of seeming nothingness, Kate has forged strategies for living with dementia and indeed for living well (albeit not without major effort on Kate’s part as well as support from her husband, sons and close friends). Better still, she has become a role model and an advocate, demonstrating for others that life and love with (not “after”) dementia is possible, that the losses, though painful, can entail new discoveries and pleasures, that there are alternatives to the grim scenario I earlier described.

Kate’s book adds to this ongoing project of living and demonstrating how it is possible to live. Yet the book is simultaneously quite simply a striking artistic achievement in its own right, brimming with delicious imagery, formal invention, linguistic play and philosophical insights relevant to all of us who live and love and sometimes lose – dementia or no dementia. The creativity and honed precision of the poems is a feat of poetic prowess over which any writer would hold gloating rights. Knowing the circumstances of the book’s composition makes this feat even more remarkable. Kate’s poems become beacons and reminders that people living with dementia can exercise prolific creativity, indeed cleverness. They can philosophise and invent, have endless gifts to offer. Furthermore, there are perhaps certain gifts that only people living with dementia can offer – gifts that a broad social failure to listen has led to us missing out on, and missing out big time. Kate’s gifts are the insights her hard road has won her. For as her poems ‘Sadness’ and ‘Loss’ so perfectly relate, hardships are creators of beauty, are teachers that open us to growth, healing and meaning, to new conceptions of life’s preciousness. This preciousness shines throughout the collection in which a recurrent theme – whether stated directly, as in ‘Room With a View’ and ‘The Ups and Downs of Life’, or in more subtle ways, as in ‘My Garden’, ‘Peace’ and ‘Thank You’ – is that of being lucky, grateful and glad to be alive.

Kate’s poetic expressions of gladness are, in my view, acts of glorious defiance, even activism. For Kate dares to declare gladness in the face of predictions all gladness would fade; she finds and creates the very possibility and possibilities our outmoded medical models deem impossible. Kate’s book solicits a clear call for change, and ought to be required reading for all working in health care – indeed for anybody likely to ever encounter any person with dementia in any situation whatsoever, which effectively means it should be required reading full stop. Through dips into valleys of loss, this poetic rollercoaster reminds us why we love. It takes us through lows that don’t just punctuate the highs, but make them possible, bringing new appreciation for the giddying ride that is life. Un/expected turns, loops and corners make it a rocky ride, yes, but worth it. Hang on and enjoy.”

 Amelia Walker Ph.D. © 2016


Someone I have admired for decades, Emeritus Professor Roly Sussex, and who I have listened to on ABC Radio for almost as long, generously read my collection, and wrote this short piece for the back cover;

“What do you do with a diagnosis of dementia? And especially younger onset dementia?

Kate Swaffer responds with love, life and torrents of words. Some of the words show loneliness and fear, exclusion, apprehension. But her strong theme is how to be a vigorous involved participant in the world of light, gardens, cats, and above all, people. Her poems affirm “believe you can when others say you can’t”. And on behalf of people with dementia, “we are all real!”.

“Like a good red wine or an old red rose”, these poems are full of wisdom, understanding and a view of the world from someone with dementia, living through dementia, but also above dementia.”

            Emeritus Professor Roly Sussex © 2016

21 thoughts on “Love Life Loss – A Roller Coaster of Poetry Volume 2 : Days with Dementia

  1. Pingback: Looking back, to move forward |

  2. Oh best of luck with volume two Kate!!! Nobody can ever say you ever wasted your life my dear! You have embraced it despite the challenges and given hope to many who are suffering Dementia as well. You are a force to be reckoned with my friend… Keep on shining light into the world. Hugs to you….VK


  3. Congratulations Kate, loved reading Amelia Walker’s forward. She truly holds you and your writing in high regard. I know personally that your poetry is and should held in such high regard, not only in the academic world but everybody should read any publication of yours as I know that your heart and soul goes into each and every word.
    I still and always will stand in awe of you Kate Swaffer


  4. Congratulations on the book! Your accomplishments and life after diagnosis give me new eyes for my father who lives with dementia. Deepest gratitude for stepping boldly out and carving a new path for yourself and those who travel this road with you.


  5. I am so sorry to read you have been unwell and hope you soon make a full recovery. What a wonderful foreward Amelia has written for your book. I look forward to purchasing a copy and reading it. Best wishes to you.


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