REVIEWS: A Hospital Bed at Home

9780992423629The iconic Australian author Helen Garner described A Hospital Bed at Home as:

“A quietly articulate, intensely practical account of the work of love in the face of death: a guide for the timid and a challenge for the confident.” – HELEN GARNER (Author of The Spare Room)

5 of 5 Stars – Customer review on 06/08/2014
This book sat on my bedside table for weeks after I’d bought it – somehow I kept putting it off and choosing less confronting, friendlier options for my bedtime reading. I eventually started and then finished it in one hugely satisfying sitting today and remembered why I’d bought it in the first place – because I knew what a sharp and lovely writer Janene Carey is and how rich and nuanced her perceptions are. This was a beautiful book to read – and a privilege to share such personal true stories of people’s lives and deaths; tricky territory communicated with dextrous and sensitive honesty. The book travels from family to family, deftly revealing their histories, their idiosyncrasies and the messy contradictions of human relationships. The voices of the carers emerge clearly and distinctively, and their personalities give this book about death such life and spirit. As with all good books, this one changed me just a little; somehow I feel a tiny bit wiser having read it.

5 of 5 Stars – Customer review on 07/05/2014
I can’t remember a book that has had such a strong emotional impact on me. Maybe it is knowing the author, or having a sick dad myself, but I was floored by this book. I finished it a few days ago, but it has taken me that long to figure out what I want to write about it. Carey has written about a subject that needs to be talked about. Caring for loved ones to their deaths is a task just about all of us will face one day, but nobody talks about it. It’s not easy to know what to say, really.

The book begins with several different accounts of caring for dying relatives. Carey has found a really eclectic group of people to explore the a range of experiences of nursing loved ones to death. While in some ways, there are universal threads running through their stories, Carey also highlights the incredible diversity of experiences and emotions people have when they support a loved one to die at home. Her sensitive re-telling of their sacred stories also highlights the enormous impact death has on family dynamics in the lead-up to death and beyond. She explores the impact of impending death on a mother with young children. I was particularly moved by an account of death by a Buddhist family, who saw the whole process as a spiritual practice that was enriching as well as harrowing.

Carey writes about the extreme stress, love and emotional upheaval caring for her mother until death, and the result is raw and confronting. She does a great job of describing the extremes of exhaustion and the mess of emotions when her mother was dying. She also explores the impact it had on her whole family, the guilty juggle of caring for children and attending to the rest of the family while supporting her mother. The ongoing impact on family dynamics is probably not something people tend to think about until it actually occurs.

This is a subject that needs to be written about, but it takes a writer of great courage and skill to tackle it. Carey is blessed with both courage and skill as a writer and she has written an amazing book. I will be recommending it to anyone facing a death in the family, as a source of solidarity, understanding and support. A very special and valuable resource for those of us who are facing this difficult universal milestone. Books like these are not only valuable, they are well overdue. In a world that can be saturated with information, this book is outstanding and I will not soon forget it.

By Lynette Aspey on May 31, 2014
Janene Carey’s “A Hospital Bed at Home” is a collection of six personal accounts of caregiving from diagnoses to death. Together, these stories blend into an insightful, heart-felt narrative and provide a window into the lives of every-day Australians who found themselves the carers of their dying loved ones.

This collection opens a dialogue that is so needed in our society and it is journalism at its best: transparently written accounts of real people. It makes for sad, often funny, and completely compelling reading – an experience that is at once emotionally draining and uplifting.

To read a book that conveys stoic courage, honest admissions, grief and humour without a single platitude or overt message, is a tribute not only to the people who shared this most personal of experiences, but to Janene’s skill as a writer.

We all face passing away. We can hide from that, or take into consideration both ourselves as the care giver and receiver. It is not an easy subject to recount or read, but each story is underpinned with love. It is what it is, and that is what makes this modest, beautifully written book so important. It deserves to be widely read, recommended, passed along.

By edwina shaw on August 26, 2014
This book is a wonderful resource for those who are caring for a loved one with a terminal illness, especially if they are choosing to do so at home. As is shown through these true stories, caring for someone who is dying is an exhausting process, not just emotionally, but also physically. Carey writes in depth about what it is like to be one of these carers, using her own experiences and those of others. In her own section she writes with brutal honesty reminiscent of Helen Garner about the emotional roller-coaster she rode as she cared for her dying mother.

Christina Escamilla, July 15, 2014
From the start, I knew that this piece would most likely be a sad read. The initial dedication is to the author’s mother who passed on in 2006. From this description alone and the resulting introduction, one knew to expect hidden sadness and beyond this personal foray into the book was how well Carey helped to weave readers into the subject matter at hand. Even despite writing a whole short story collection that features many forms of death, I knew that I would find the topic especially hard to muster and thus, I made sure I had a tissue box on hand (just in case). The book itself is about caregivers and their experiences with helping someone who is at the precipice of death. Although, I am not a caregiver or medical professional myself, and thus, my insight is admittedly limited, I will say that I have known two personal deaths – that of my grandparents. These deaths were both equally different; my grandfather was simply here one minute and gone the next, still seemingly able to experience life for years to come. My grandmother, on the other hand, deteriorated slowly, and in this regard, I understand the need for this kind of book. Everyone handles death differently, but what can we do to those who may know it’s coming; those who see a sharp decline in the open jaws of whatever lies on the other side?

In answering this question Carey offers up several stories about real people dealing with death in a stoic and emotionally charged way. Although, the book is largely about those who pass on, it’s more so about those who they have left behind and have seen them through their final moments. Carey’s writing choices is superb in this regard because she does well to humanize those within the pages of the piece. Their stories are front and center so that through them we understand the hopelessness, the fear, the urgency, and even the quiet recollections of a life well-lived. It is the cast of this book, whose names have been altered, who bear the most consideration. To start, we have Hugh, a man with lung cancer who held his dignity and fought every step of the way; until his final cry was his wife’s name. Another man, Gerald handles death the way one simply handles an unfortunate misstep in the day, a minor inconvenience that bears no more consideration than a wayward fly. One death that was particularly painful to read was Lynne, who not only had young children, but whose illness was sudden. One especially straining sentence to read during this tale was when the husband awakes in the middle of night to a groan. It was only in the morning did he realize that final breath may very well have been her last.

The book concludes with the author’s own story. As mentioned, death has touched Carey personally through her mother and her battle with cancer. This story was especially poignant and rightly so, as a reader I felt a sense of heaviness towards the close of the book. I admit that there were many parts that had me tear up, but I never cried outright like I thought I would. This was certainly not a bad thing, as I felt that Carey knew when to be detached as a storyteller and when to rile up emotions. Overall, the book makes for a very beautiful, albeit short read. In this regard, from a nonfiction standpoint I wish that there was more content, as well as additional resources that could be drawn from. There is a list of outside resources, but if I was coming from a care giving perspective I think I would want more information on the matter as a whole as opposed to light author commentary and insight. Regardless, if looking at the book as just a nonfiction short story collective, the tales therein are definitely memorable.

Last week Janene Carey commented on the Podcast, “Home is Where the Heart is. Dying at Home”. Janene Carey is the author of “A Hospital Bed At Home”. She thought I would find her book important. I read it a couple of days ago and it is an important book. Carey shares the personal stories of six caregivers who care for a loved one with a terminal diagnosis of either lung cancer or colon cancer. Amazon link here.

I’ve spent the past few days trying to figure out how to communicate what I am feeling and the importance of this book for me, for all of us. My struggle is not writers block or my own fear of writing but, how can I do justice to this book. Simply saying – powerful, touching, evocative, disturbing, important, must read – feels excessive and boastful and a lot like bullshit. To not shout about these personal and powerful stories may fail to capture your attention and ultimate reading. Perhaps what is happening is that these stories are so close to my caregiving experience that I am stuck in a block of emotional amber.

Most of you know about Donna’s passing, my caregiving, my view on end of life, and palliative care. And if you’ve read my posts or listened to my podcasts you also know that my experiences are a driver to educate and share because Donna and I were blessed to have received the care we did. And to know that care afforded us and me so much is a blessing that I want others to have access to.

Janene Carey interviews five caregivers and shares her own story of caring for her mother. Each story is unique because we all look at dying, death, and loss differently. Each story is an exploration of the bond between caregiver and patient that exists prior to and during caregiving and after death. Carey takes the reader into the most personal and intimate moments any relationship faces, death of someone we love. These are stories of life and love and fear and loss and pain and joy. Carey examines the boundaries and bonds between the loved one and the caregiver Over time she shows how those boundaries and bonds dissolve, the couples become one in compassion and love.

“People think it must be just horrible that it’s happened, you know, that the kids have lost their father and so on. But there were so many beautiful aspects of it that the word coping doesn’t seem to incorporate. What you’ve been through, in some ways it’s the most amazing experience. You’ve had the privilege of going through it with someone you’ve loved. They’ve let go totally in front of you and you’ve been trusted to be with them.”
I relate to this because Donna trusted her disease to me.

“Guilt comes no matter what you have or haven’t done. To live without guilt after the death of a loved one, a person would have to accede to literally everything the other person wanted. And what that means is living one’s entire life in attendance of the other’s death …David Rieff “Swimming in a Sea of Death: A son’s memoir.”

With each story, each paragraph we take the journey into caregiving and dying. The journeys are not easy and truthfully I recoiled at the detail of each and what needed to be accomplished practically and emotionally. These stories expose the harsh reality of caregiving and dying while providing a narrative how-to-guide. These stories become preparatory exercises for all of us. In his essay A Grief Observed CS Lewis notes that when he looks at couples he knows one will suffer grief and loss.

I looked for hope as I was reading Carey’s book and that was not easy but, it was there. As I read these stories I looked back at my caregiving to see where I’ve been and what I felt. I was not alonewe are not alone. Others experiences offers hope and a sense of place in a world turned upside down. Hope is not necessarily the future, it is the past put into a loving embrace.

Carey does not limit her insightfulness to only the caregiver but how the world views and interacts with the caregiver.

“The Badens’ acceptance of Hugh’s condition as terminal was something else that other people found hard to understand. It wasn’t the right attitude. The prevailing cultural norm is to regard those with cancer as soldiers fighting a war, brandishing the indispensable weapons of hope and positive thinking. People seemed to think it was their duty to act as recruiting sergeants and push Hugh forward to the front line”

And we see where the physician fails during this time.

“That’s right,’ she replies. ‘And when I contacted them, they couldn’t believe that neither the oncologist nor the GP had ever suggested getting palliative care. They told me palliative care should be brought in at the beginning, when the diagnosis is made, not towards the end like I’d assumed. That’s why I contacted them. Because he was going downhill and I knew the time was coming when I needed that help to care for him at home. So I downloaded a form from the internet and sent it in.”

Who should read this book? Anyone that has been a caregiver because it illuminates that what we experienced and we learn we are not alone or if we cannot find words or emotions you will find them on these pages. Anyone who is a friend of a caregiver. Anyone who may become a caregiver. Anyone who will be cared for or is being cared for. This book is a must read in todays aging population and healthcare system.

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