The Unravelling: How our caregiving safety net came unstrung and we were left grasping at threads, struggling to plait a new one
By Clem Martini and Olivier Martini
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About this ebook
Olivier Martini and his mother, Catherine, have lived together since he was diagnosed with schizophrenia thirty-six years ago. It hasn’t always been a perfect living situation, but it’s worked — Catherine has helped Olivier through the ups and downs of living with a mental illness, and Olivier has cared for his aging mother as her mobility becomes limited, and Olivier’s brothers Clem and Nic have provided support to both as well. But then Olivier experiences a health crisis at the exact same time that his mother starts slipping into dementia.
The Martini family’s lifelong struggle with mental illness is suddenly complicated immeasurably as they begin to navigate the convoluted world of assisted living and long-term care. With anger, dry humour, and hope, The Unravelling tells the story of one family’s journey with mental illness, dementia, and caregiving, through a poignant graphic narrative from Olivier accompanied by text from his brother, award-winning playwright and novelist Clem Martini.
Clem Martini
Clem Martini is an award-winning playwright, screenwriter and novelist based in Calgary, Alberta. He has over thirty plays and ten books of fiction and non-fiction to his credit, including the popular young adult trilogy The Crow Chronicles. His texts on playwriting, The Blunt Playwright, The Greek Playwright, and The Ancient Comedians, are used in universities and colleges across the country. He teaches in the department of drama at the University of Calgary.
Read more from Clem Martini
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Book preview
The Unravelling - Clem Martini
Olivier Martini’s sketches, paintings, and prints have been displayed at the Marion McGrath Gallery and Studio Three Gallery, published in Alberta Views magazine, and were included as part of the Canadian Mental Health’s Copernicus Project. His first book, Bitter Medicine: A Graphic Memoir of Mental Illness, a collaboration with his brother Clem, won the City of Calgary W.O. Mitchell Book Prize.
Olivier Martini.Clem Martini is an award-winning playwright, screenwriter and novelist. He has over thirty plays and ten books of fiction and non-fiction to his credit, including the popular young adult trilogy The Crow Chronicles. His texts on playwriting, The Blunt Playwright, The Greek Playwright, and The Ancient Comedians, are used in universities and colleges across the country. He teaches in the department of drama at the University of Calgary.
Clem Martini.THE UNRAVELLING
THE UNRAVELLING
Clem Martini & Olivier Martini
How our caregiving safety net came
unstrung and we were left grasping at
threads, struggling to plait a new one
Freehand Books logo.Various sketches of the hospital, waiting room, security, Peter Lougheed Pharmacy, with the text: Navigating the mental Healthcare system.If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn’t. And contrary wise, what is, it wouldn’t be. And what it wouldn’t be, it would. You see?
LEWIS CARROLL
Mom, dad, Olivier, and Clem.To deal with mental illnesses and dementia is to enter a mirror world, where words can often mean their opposite. Truth and lies can be exchanged, one for the other, and perhaps the most dangerous lies are the ones we tell ourselves.
Table of Contents
Cover
About the Authors
Title Page
Copyright Page
Introduction
Start Reading
Conclusion
Epilogue
Copyright
Praise for Bitter Medicine: A Graphic Memoir of Mental Illness
Cover Page
About the Authors Page
Half Title Page
Title Page
Table of Contents Page
Introduction
Start Reading
Conclusion
Epilogue
Copyright Page
Praise for Bitter Medicine: A Graphic Memoir of Mental Illness
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Guide
Cover Page
About the Authors Page
Half Title Page
Title Page
Table of Contents Page
Start of Content
Copyright Page
Praise for Bitter Medicine: A Graphic Memoir of Mental Illness
Introduction
The Unravelling is the story of Liv and his family. Liv has schizophrenia. His mother, his caregiver of many years, is sinking into the abyss of dementia. His brothers, who provide ongoing support, pick up the pieces whenever the health care system fails. Who or what is unravelling in this story? Liv? His mother? His brothers? The system?
Caregiving can be complicated. In some cases the line between caregiver and recipient can be blurry. For years Liv’s mother cared for him, and in return Liv provided emotional support, companionship, and physical help to her. What happens when the delicate balance is interrupted by the onset of ill health, old age, dementia, and the once reliable caregiver becomes care recipient? Other family members intensify their engagement, now caring for a brother with schizophrenia as well as a mother with several physical health issues and escalating dementia. Clem, Liv’s brother and the narrator of this story, seems to sail through the murky waters of schizophrenia and dementia care with much poise. He is an experienced caregiver and knows how to navigate the system, but his endurance is tested times and again. Dementia, as Clem notes, isn’t a decline: it’s a plummet from a precipice. And as you fall you strike against the rocky cliff face, each strike removing another portion of who you were.
For Liv, the pain of losing his mother — his main support — to dementia, is compounded by the feeling that he has failed to take care of her.
With most of us, if not all, expected to be caregivers or care recipients at one time or another, and with the current state of health care throughout the country, the picture is bleak. This book is a testimony to the trials and tribulations of one family, whose patience and good will are exhausted by an unfriendly, often hostile health care system; it is also a manifesto against the priorities that create the many shortcomings of health and social services.
This very personal and intimate book is extraordinary in its description of ordinary situations. Accompanied by Liv’s moving drawings, which are at once filled with compassion, confusion, fear, and at times humour, it is a must read for us all.
Ella Amir, Executive Director, AMI-Québec Action on Mental Ilness
Ella Amir has been working with families affected by mental illness since 1990 in her capacity as the Executive Director of the Montreal-based AMI-Quebec Action on Mental Illness. Ella was the chair of the former Family Caregivers Advisory Committee at the Mental Health Commission of Canada and is now a member of its Advisory Committee.
It’s early and dark when the phone rings.
I haven’t had breakfast yet and am just set up at the dining room table, papers strewn in front of me, picking at my computer keyboard and nursing a cup of warm tea. I lift the receiver, cradle it to my ear, and am surprised to hear my brother’s psychiatrist on the other end. Dr. Baxter apologizes for calling early, tells me she has phoned Olivier’s, and has been unable to reach him. Where is he?
His blood work has returned from the lab, she tells me, and there’s a problem. The tests indicate his white blood cells have been seriously compromised. She mentions the possible condition he is suffering from — it’s long and scary-sounding: agranulocytosis. It’s essential that he get to emergency at once, she says.
I consider where he might be. Olivier is an early riser, and each morning he promptly flies out the door. Typically, his day is crammed full of visits to support groups, social agencies, and art clinics. I recall he had mentioned that he would be working on a sculpture in his art class at Self Help, a community mental health support centre.
I say I’ll try to get hold of him there. She tells me she’ll call the Foothills Hospital to prepare a placement for him.
The coordinator at Self Help says Olivier has just arrived so I ask her to bring him to the phone. When he picks up, I fill him in on the situation and tell him that I’ll drive down and get him. The coordinator, who has overheard the conversation, interrupts to say she’ll call a taxi to save time.
Liv and I meet at the hospital twenty minutes later. I steel myself to accompany him through emergency intake, which I tend to view as something like hell with all the good bits left out. There are the endless lineups: first you line up to receive an identification number and state your condition, then you line up again to see someone who will establish if the condition is serious, then you wait for someone to arrive who will actually examine you, and so on. There are the sad, angry, tortured souls haunting the waiting room, the feverish and the drunk, the bleeding and the nauseous. There are the chairs, designed to punish, and over everything hangs the smell of vomit blended with the sharp, piney odour of disinfectant.
So, now we wait.
OlivierAn hour and a half later we’re transferred into the examination area and a doctor arrives. He confirms what Liv’s psychiatrist suspected: Olivier’s white blood cell count has plummeted. The doctor is young and self-assured and not particularly adept at communicating. I ask a few questions. No, he doesn’t know why this condition has suddenly appeared. No, he doesn’t know what can be done. No, there are no beds available. It will be several hours before Liv can expect a placement, and I reflect that emergency, where every form of virus, germ, or bacteria collects, is the worst possible environment for someone with a compromised immune system.
Liv is conducted down a narrow corridor, provided with a temporary cot, and handed a sandwich wrapped in plastic and a juice pack — dinner. I ask him if he’s okay. He says he is and I tell him I’ll return in the morning — hopefully by then a bed will have been secured, and someone will be able to sort this all out.
When I get home I phone my mother to let her know that Olivier will likely spend the next few nights at the hospital, then I text my oldest brother, Nic, to let him know what’s happened. He says he’ll pay a visit to Olivier after work the next day. I sit down at my computer and Google agranulocytosis. Wikipedia offers this definition: People with this condition are at very high risk of serious infections due to their suppressed immune system.
Any number of small problems can quickly advance and become dangerous. It may clinically present with sudden fever, rigors, and sore throat. Infection of any organ may be rapidly progressive (e.g. pneumonia, urinary tract infection). Septicemia may also progress rapidly.
When I get home I tell my wife, Cheryl, what’s happened. She’s sympathetic, but assures me there’s nothing to be done till Liv has received a full examination. And she’s right, but when I go to bed I can’t sleep. I keep returning to Liv’s blood problems. I’d noticed that something was wrong with Liv over a month ago. He’d seemed unusually tired and confused. When I brought breakfast over for Liv and Mom, he would eat it, finish, and flake out on the couch.
I’d interpreted this as another side effect of his meds, and had asked him to consult with his doctor. He assured me that he’d do so, but who knows if he did? Or maybe he did, and the doctor didn’t follow up. In any case, I should have stayed on it. Obviously, I’d dropped the ball.
I rise early, eat, and return to the hospital.