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Biography & Autobiography Personal Memoirs

Be With

Letters to a Carer

by (author) Mike Barnes

Publisher
New Internationalist
Initial publish date
Jan 2019
Category
Personal Memoirs, Eldercare, Mental Health
  • Paperback / softback

    ISBN
    9781912408184
    Publish Date
    Jan 2019
    List Price
    $23.5

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Description

n 2007, after a dozen years publishing fiction and poetry, Mike wrote a memoir of mental illness entitled The Lily Pond: A Memoir of Madness, Memory, Myth and Metamorphosis. The book explored the struggle to find practical means of living with serious mental illness, but even more, the need to find a sustaining story, or stories, when “story” itself keeps disintegrating. When it was done, including some follow-up essays and talks, Mike assumed he might be done with nonfiction writing about mental health.

A decade later, however, seven years into caring for his mother as she journeyed deeper into Alzheimer’s, Mike felt the need to enter those waters again. In four long letters to an anonymous caregiver, Be With: Letters to a Carer describes the essence of what he learned about living with dementia and about caring for others while still caring for oneself. Like the earlier book, Be With aims to find an orientation that sustains when life stories shift perilously—to find, as he said in a recent interview, “stars to steer by.”

This is no ordinary practical care guide. Using bite-sized paragraphs perfectly designed for harried carers to dip into, Barnes tells a compelling personal story that unfolds a side of dementia almost entirely missing from public discussion:

‘All people with dementia, and some of them strikingly, show depths of sensitive awareness, resilience rising to heroism, and a capacity for joyful relatedness.’

Calming and contemplative yet fiercely alive, this consoling, humane and surprisingly uplifting book balances candour about the devastations of dementia with inspiring insights into its paradoxical and often uncanny enhancements of life, the ways in which it sometimes calls forth capacities long-buried by the defences of full cognition.

Addressed to carers but relevant and deeply important for us all, Be With encourages us to focus on fellowship and accurate witness: to simply be with who, and what, is actually before us.

About the author

Mike Barnes is the author of the novels Catalogue Raisonn? and The Syllabus, the short fiction collections Aquarium -- winner of the 1999 Danuta Gleed Award -- and Contrary Angel, and two poetry collections, Calm Jazz Sea, shortlisted for the Gerald Lampert Memorial award, and a thaw foretold. His stories have appeared twice in Best Canadian Stories, three times in The Journey Prize Anthology, and won the Silver Medal for Fiction at the National Magazine Awards. He was the subject of a feature issue of The New Quarterly (Summer 2001) which included an interview and three new stories. In 2008 he released his first non-fiction title, The Lily Pond: A Memoir of Madness, Memory, Myth and Metamorphosis. Formerly a piano teacher, fishing guide, janitor, steelworker, dishwasher, clock salesman, security guard, English teacher, in recent years he has been working as a private tutor. He lives in Toronto.

Mike Barnes' profile page

Editorial Reviews

‘Timely, lyrical, tough, accurate, and ultimately not (too) depressing. Or as my aunts used to say, Roll up your sleeves.’ – Margaret Atwood

‘Lyrical and powerful.’ – Van Cortlandt Public Library Staff Pick

‘I’ve sent bits of it to my sister, to her delighted recognition, and have tucked others close to my heart to support me throughout my journey with Mum. An idiosyncratic, poetic, deeply personal book which speaks to and affirms what I’ve seen and felt.’ – Dementia's Daughter

‘I can imagine this being an invaluable companion for caregivers, to be tucked into a pocket or purse and pulled out for a few moments of relief.’ – Bookish Beck

‘Barnes, who also lives with bipolar disorder has been the principal caregiver for his mother Mary for several years as she copes gallantly, not always successfully, against her dementia. That’s one of the finest things about this book; Barnes's generously expressed admiration for his mother as she struggles with this extraordinarily intimate illness.’ – Julia Jones, Authors Electric

‘I think those two words, Be With, are an inspired choice to sum up what really matters to people who are living with dementia. I also agree with Mike Barnes that there is so much to be learned and appreciated by those family members and friends who remain close. The last years of life are as much as integral part of existence as the first. Well done to Mike Barnes for expressing this so passionately.’ – Julia Jones, publisher and co-founder of John's Campaign

‘I thoroughly enjoyed reading Be With. Mike shares wisdom, hope and reality all with insight - Be With is a real stand-out.’ – Kathryn Quinlan, Mentor Trainer/Products and Services Coordinator at Positive Approach® to Care

‘Barnes writes with a clear and melodic tenor; there’s poetry in his myriad introspections, and a willingness to put everything on the table, good, bad, and heart-wrenching. This is a powerful book for those who have experienced similar trials, regardless of length of time or severity.’ – Publishers Weekly

‘My heart lodged in my throat and my eyes stayed glassy... It’s a lovely, loving and unflinching work reflecting on an awful, inexorable illness. Physician offices would do well by stocking copies.’ – Toronto Star

‘A friendly, authoritative voice in the dark that will lead its at-the-end-of-their-tether listeners through to the endgame.’ – Literary Review of Canada

‘The particulars of Mary’s dementia give this brief book universal appeal. The author effectively humanizes himself as a man who has made errors, who wishes he had done things differently, and who has his own psychological burdens to bear... A book that tells the reader that you are not alone, whoever you are.’ – Kirkus Reviews