Be With

Letters to a Carer
£8.99 Preorder Recommend

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

In 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.

Julia Jones, publisher and co-founder of John’s Campaign

5 December 2018
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. How terribly sad that three of Mary's five children chose to absent themselves from her life when she needed them most in her old age and illness. It's their loss as well. 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.

Publishers Weekly

16 November 2018
Barnes shares a tender exaltation of caregivers and the act of caring for a loved one suffering a debilitating chronic condition. The author is caring for his mother, Mary, who’s battling Alzheimer’s. In four short essays, Barnes (The Adjustment League) details the emotional and physical toll of years spent in hospitals and long-term care facilities; of micro-comas that come out of the blue when sleeplessness and stress are finally overwhelmed by bodily needs; of personal service workers his mother attacked in fits of rage and confusion; of dealing with language and basic communication skills lost alongside her memories; and of being stretched about as thin as one can tolerate without coming apart entirely. Barnes writes sympathetically about “caregiver time”—a form of suspended animation throughout the process of caring for another—and what it means to lose vast swaths of it, and to have one’s life placed in it. 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. 
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Toronto Star

20 September 2018
My heart lodged in my throat and my eyes stayed glassy over the brief duration of Be With. It’s a lovely, loving and unflinching work reflecting on an awful, inexorable illness. Physician offices would do well by stocking copies. Mike Barnes shares knowledge (‘The truth is, there's no graceful way to take control of someone's life away from them’) and he asks questions (‘How much room in your own heart?’) any caregiver must consider. He also asserts his primary insight: ‘But being with in person trumps all else. It's the one way of caring most likely to be right, and the least likely to be regretted’.

Literary Review of Canada

13 September 2018

In their simplicity and even-handed tone, the letters achieve their author’s difficult aim: they present as a literary Third Man, a friendly, authoritative voice in the dark that will lead its at-the-end-of-their-tether listeners through to the endgame... Barnes has been moved and amazed by his mother’s courage and effort, how she has learned to be a new person. She has had dementia for perhaps twelve years, a significant chunk of her life, as long as her K-12 school years, he points out, just as he has spent a solid portion of his life—almost as long as his childhood with her—seeing her through it. What really matters, he concludes, is the hardest thing, being there with her. ‘For every thousand pages describing how living is shattered by this dread disease, there should be at least one page observing how living goes on within it’. Be With has 156 pages of them.

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