Be With: Letters to a Caregiver

by Mike Barnes

SHORTLISTED FOR THE TORONTO BOOK AWARDAS SEEN ON GLOBAL NEWS TV'S THE MORNING SHOWA CBC CANADIAN BOOK TO READ FOR MENTAL HEALTH WEEKDrawing on the author’s seven years of caring for his mother through Alzheimer’s, Be Letters to a Caregiver is what its title four dispatches to an anonymous long-term caregiver. In brief passages that cast fresh light on what it means to live with dementia, Barnes shares trials, insights, solace—and, ultimately, inspiration.

Meant to be a companion in waiting rooms, on bus routes, or while a loved one naps, Be With is a dippable source of clarity for harried readers who might only have time for a few lines or paragraphs. Mike Barnes writes with sensitivity and grace about fellowship, responsibility, and joyful relatedness—what it means to simply be with the people that we love.

Genres: Nonfiction, Memoir

156 pages, Kindle Edition

Published September 18, 2018

About the author

Librarian note:
There is more than one author in the Goodreads database with this name
This profile may contain books from multiple authors of this name

Reviews

[Julie · Rating 5 out of 5]

Mike Barnes begins his book by explaining how he wrote this book and how we may use it. He wrote it "In short bits," as he had time to write between caregiving. We might also only have time to read these "Messages in bottles" in bits.

Barnes' description of how it all begins resonates, how we sense something is 'not quite right.' At first we are not quite sure, the change is so subtle and then, there are more moments where we are nudged once again into wondering. "Alzheimer's beginnings are mysterious. What eventually becomes a great river sweeping all before it may start as thin rivulets wetting grass or leaves deep in a forest half a continent away - origins never to be seen or even guessed at." I remember my grandma looking back and pinpointing where she thought it all began with my grandad.

Quote that the author emphasized: "All people with dementia, and some of them strikingly, show depths of sensitive awareness, resilience rising to heroism, and a capacity for joyful relatedness that is almost totally missing from public discussions of their condition."

Barnes also writes that "Dementia is a story of unravelling. Of dismantling. Of undoing. Some threads, now undone, will turn out to have been knots that blocked rather than supported, snarls that only looked like ties." Perhaps having dementia frees the mind in some way.

Barnes writes that the casual prejudice his mother had expressed throughout her life was now gone. "People were just people, finally. Black, brown, yellow, pink. She orientated to niceness, to warmth - like a sunflower tracking the sun - and had an enhanced ability to detect genuine kindness, as all fragile and dependent persons must."

Closing words, "For the goodment of others. For the goodment of yourself. Be with"

[Rebecca · Rating 4 out of 5]

(3.5) Mike Barnes, a Toronto poet and novelist, has been a primary caregiver for his mother, Mary, in the nine years since her Alzheimer’s diagnosis disease. She grew up on a Saskatchewan farm and is now in her nineties; he’s in his sixties. A bipolar sufferer, Barnes has spent his own fair share of time in hospitals and on disability. He’s moved Mary between care homes four times as her condition has deteriorated. Though he laments her gradual loss of words and awareness of her family, he can still discern instances of her bravery and the beauty of life.

This book of fragments – memories and advice delivered via short letters – was written in between demanding caregiving tasks and is meant to be read in those same gaps. Dementia is one situation in which you should definitely throw money at a problem, Barnes counsels, to secure the best care you can, even round-the-clock nursing help. However, as the title suggests, nothing outweighs simply being there. Your presence, not chiefly to make decisions, but just to sit, listen and place a soothing hand on a forehead, is the greatest gift.

There are many excellent, pithy quotations in this book. Here are a few of my favorites:

Dementia is…

“a retreat under fire”

“a passage of exquisite vulnerability”

By your loved one’s side is “Not where things are easy, or satisfactorily achieved, or achievable, or even necessarily pleasant. But where you ought to be, have to be, and are. It brings a peace.”

The goal is “Erring humanely”.

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. On the theme of a parent’s dementia, I’d also recommend Paulette Bates Alden’s book of linked short stories, Unforgettable.

Originally published on my blog, Bookish Beck.

[Katie · Rating 5 out of 5]

Stunning, raw, and honest. The perfect read for someone wondering if they're doing the right things for their loved one in crisis. It came to me when I really needed it.

[Eftihia S. · Rating 5 out of 5]

Και κάπως έτσι, μετά από δύο χρόνια περίπου αποχής από τη συγγραφή κριτικών στο Goodreads, θα κάνω μια εξαίρεση χάριν του "Be With: Letters to a Caregiver", για να γράψω (όχι τόσο μια κριτική αυτή τη φορά, όσο) ένα μοίρασμα. Διαβάζοντας το βιβλίο αυτό, νιώθεις λες και έχεις έναν φίλο απέναντι σου. Έναν φίλο που σου κρατάει το χέρι όσο μιλάει για τις προσωπικές του εμπειρίες πάνω στη φροντίδα χρόνιου ασθενή, ο οποίος στην προκείμενη περίπτωση είναι η μητέρα του που πάσχει από Alzheimer. Δίχως στιγμή να γίνεται κουραστικός, άκριτα διδακτικός ή πατροναριστικός, σου δίνει συμβουλές με τον πιο αληθινό κι ανθρώπινο τρόπο, βεβαιώνοντας σε άρρητα πως όλα θα πάνε καλά στο τέλος.

Το "Be With" δεν είναι ούτε βιβλίο αυτοβοήθειας, ούτε ημερολόγιο. Είναι ένα μοίρασμα φροντίδας προς συν-φροντιστές, μια υπενθύμιση για το ποια είναι τα σημαντικά πράγματα εν τέλει στη σχέση φροντιστή - φροντιζομένου, καθώς και ένα νεύμα επιβεβαίωσης κι αναγνώρισης της ύπαρξης και του αγώνα των συν-φροντιστών του γράφοντος.

Αν είστε ή έχετε υπάρξει κι εσείς φροντιστές, κάντε αυτό το δώρο στον εαυτό σας και αναζητήστε τούτο το μικρό βιβλίο, όπως θα αναζητούσατε ένα δυσεύρετο κενό μέσα στην εβδομάδα σας για να τηλεφωνήσετε σε έναν αγαπημένο σας φίλο.

"Don't ask the moon of yourself" Really? Of whom then (the moon-shot being needed)? Ask the moon, your loved one deserves it. But forgive yourself - after many valiant tussles with gravity, after many hope-surpassing flights - for being, finally, the earthbound human.

[Ben Truong · Rating 4 out of 5]

Be With: Letters to a Caregiver is an anthology of autobiographical personal essays or letters written by Mike Barnes. These letters are addressed to caregivers that had taken care of Mary, his mother, who has Alzheimer's. It has been short-listed for the 2019 Toronto Book Awards.

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 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.

Be With: Letters to a Caregiver is written rather well. Barnes writes with a clear and melodic tenor with 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.

All in all, Be With: Letters to a Caregiver is a wonderful collection of personal essays directed to the caregiver profession.

[Andrea]

This book couldn't have come into my life at a better time. Intended to be read as a companion in waiting rooms, on buses, or in hospitals, this book is the author's description of caring for his mother through Alzheimer's disease. My favorite passage so far:

Late the next spring, I hired two women-Agnes and Cynthia-to be with her in rotation in the afternoons. They walked together, drove together, sat together. It helped. It reduced hell.

If you can't be with, ask, hire, get another to be with.

It's another, if a lesser, being with.

[Emily · Rating 5 out of 5]

Absolutely beautiful, heart-wrenching, and accurate.

[Eli · Rating 3 out of 5]

"Be something harder to be than everyone, no one, or anyone.
Be someone.

Not everywhere, elsewhere, nowhere.
Here.

Not always, never, or eventually.
Now.

Be something harder to be than a father or mother, brother or sister, husband or wife, son or daughter.
Be a friend.

For the goodment of others.
For the goodment of yourself.
Be with."

[Shavawn M. · Rating 5 out of 5]

This slender volume contains four letters to caregivers facing the challenge of caring for a relative with dementia or Alzheimer's disease. In eloquent, slow prose - he peels the onion of his own experience caring for his mother, Mary, as she descends into the dark waters of dementia. All the way through the letters, he offers others in the same situation insight into what he's learned in the past seven years, how it has changed him, how it has made him more present, and how it has allowed him to nurture and find joy in just 'being with' his mother. Beautiful, stark, heartbreaking, and all too real for me since I am on the same journey with my mom.

[Jane Mulkewich · Rating 5 out of 5]

A beautiful, short, pithy book. A size you can keep in your pocket, and return to again and again. Written for caregivers of a loved one who has been diagnosed with Alzheimer's, acknowledging what an exhausting role that is. "Core strength: the kind you do planking for. This is meant as planking." "Caregiving produces seniors but no graduates." Exploring our cultural mythology that, come what may, our stories will abide and nourish us. "It’s not true, of course." The author writes about the only thing truly left (without stories, without memory) is the here and now - whether it is reveling in the taste of a sip of apple juice, or appreciating the view of uniformed people pitching garbage bags by the dumpster outside the window ("so many good people. Taking good care... of us. Of everything"), or a beautiful yellow flower (that happens to be a dandelion that she spent a lifetime uprooting). Be with. "The shortest thing I have to write to you also happens to be the most important." He writes about the importance of paid staff in long term care homes who spend time with your loved ones, as he writes about the four moves his mother went through in seven years as her dementia became more severe. "Mary’s hell was going to happen wherever she was. As far as I can tell, that’s true. Some places would make it worse, some would make it better; none would make it disappear." He writes about the "terrible dignity " in the lengths that people will go to just to go on.

[Marie Gerken · Rating 5 out of 5]

As the primary caregiver for his mother living with Alzheimer’s, Mike Barnes’ prose, both fragmented and lyrical, confirms the caregiver’s voice that will befriend other caregivers caring for someone living with dementia. His letters formed more as notes that can be read in any order the reader wishes, reminds me of my own notebook writing I kept while caring for my mother during her Alzheimer’s.

Barnes describes his mother’s memory loss but also is forthcoming about the absence of his siblings during his mother’s illness (one sister eventually moves back from abroad to help)and the challenges with uncontrollable disease behaviors, ineffective medications, and trials with medical personnel when dealing with these challenges. This book is an invitation to address hard topics of the disease that aren’t often talked about as well as encourages a change in our societal mindset of how to incorporate individuals living with dementia into our everyday lives rather than exiling them to long term care facilities.

[Sherry Monger · Rating 4 out of 5]

Mike Barnes has been caregiver for his Mother, who has dementia, for ten years. He has watched the ravages destroy the woman he knew, as her needs become increasingly complex. This little book documents Barnes’ thoughts and the insights he has gained along the way. Caregivers everywhere can take comfort that they share identical emotions - as they search for meaning and hope as life unravels for a loved one.

[Jesse · Rating 5 out of 5]

this is a very powerful book. i loved every component: the four chapters perfectly encapsulating the experience of caregiving, the short journal entries catered to the minuscule amount of "free" time caregivers have, the melodic prose, the reminder that being with someone, sharing energy and space, is the best caregiving tool of all. i have nothing critical to say about this book and absolutely recommend this to anyone looking for insight on caregiving, at any capacity.

[Kimberley · Rating 3 out of 5]

What a heartfelt book. If you have anyone in your life living with Alzheimer’s or caring for someone with Alzheimer’s, I think you’ll find ways to relate to the author’s experience. He speaks so genuinely and honestly about the beauty and struggle of this experience.

[wendy · Rating 5 out of 5]

lovely. useful. i cried more than once.

[Patty · Rating 3 out of 5]

Hard subject, hard read, but very well done.

[Diane B · Rating 5 out of 5]

A small book.

A companionable book.

One to "be with" for a sandwich, or a pot of tea.

Simply, profound.

In his author's talk Barnes spoke about impermanence and the power of story as he tackled the tough subject of someone acting as a caregiver for a loved one with Alzheimer's. "No wonder people flee from the vanishing image in terror."

As Barnes became his mother's caregiver, he did not write or read for the first time in decades, and lost true sanctuary.

After a two year period, he began to record his thoughts in a moleskin. Fractured, scattered moments; thoughts about his day, feelings, memories. As a result he felt a bit lighter and the writing restored and energized him.

Barnes is an author of 11 books and said at the time of these early first recordings he had no plans for publishing or sharing. It is a mystery to him still, how the book journeyed from the private page to public sphere.

He admits it took a great deal of time and effort to shape the barrage and outpouring, as he experimented with different forms: poetry, fantasy, novel. In the sixth year of caregiving the book took shape and all the false starts seemed preparation.

Four letters written quickly to 'You,' in address for his past self, for his mother, for another.

[Ampersand Inc. · Rating 3 out of 5]

I know what it’s like and how hard it is to care for someone who is elderly, or sick, or dying. The author has written a collection of personal observations and experiences while caring for his mother who has been diagnosed with Alzheimer. I`m sure we baby boomers will be seeing a lot more of these kinds of books in the market.

[Judith Bowen]

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[Hails Kirker · Rating 4 out of 5]

Suggested by Mikki