When Susan MacLeod accompanied her 90-year-old mother through a labyrinthine long-term care system, it was a nine-year journey navigating a government within a heart in a system without compassion.
Her family, much like the system, erected walls rather than opening arms. She found herself involuntarily placed at the pivot point between her frail, elderly mother's need for love and companionship, the system's inability to deliver, and her brother's indifference. She had also spent three years as a government spokesperson enthusiastically defending the very system she now experienced as brutally cold.
MacLeod's tone is defined by a gentle, self-effacing humour touched by exasperation for the absurdities and the newfound wisdom around expectations. Dying for Attention is the latest memoir in the graphic medicine field, shelved alongside My Begging Chart by Keiler Roberts and Tangles by Sarah Leavitt. MacLeod includes helpful tips for communicating with nursing homes, as well as background research, to provide a larger context for this under-discussed experience.
Susan MacLeod is an artist writing about the world of long-term care. Her illustrations have been published by Kaiser Permanente, Halifax Magazine, and The Globe & Mail, as well as for countless commissions. She holds a Bachelor of Fine Arts degree from NSCAD University and a Master of Fine Arts in Creative Non-Fiction from the University of King's College. She still misses her mother.
Wow! This is brilliant. Ever since I read and was emotionally devastated by As We Are Now by May Sarton at age 19 or 20, and then having seen my grandmother live her last 16-17 years in what was essentially a (fairly good) nursing home, and having to work when I was a student doing clinical rotations in a not the worst and not the best type of nursing home for only about 6 weeks (3 full day shifts a week, classroom instruction was 2 full days a week) but it felt a lot longer than 6 weeks, all of these things made me even more determined to not ever have to be in a place such as those.
The author/illustrator of this graphic novel writes about her mother who needed nursing home care. What I enjoyed most about this book is that so much of it is not about nursing home care and her mother’s final years but is the autobiography of the author/illustrator. It about the scope of her life and her relationships, focusing the most on her lifelong relationships with her mother and her younger brother. This is definitely a family with some difficult relationships/family dynamics. (As is pointed out in the book there are worse family situations than theirs.)
I enjoyed hearing the words of the experts in various fields that the author consults. Reading the words of the author and the experts and her quoting many people she knows or meets made this book great. I enjoyed seeing the various coping mechanisms and therapies that the author used for her own emotional support.
This book shows that nowhere is perfect. This family is in Canada, not the U.S. where I am.
The illustrations are wonderful. Writing this and reading this as a graphic novel was a wonderful way to present this story and this information.
There is a lot to read & view on every page but even so it was a fast read. It was sometimes a difficult read. I’m not sure how helpful it would be for older people already needing help or having been diagnosed with dementia but I think it would be helpful to their loved ones, especially those taking on any kind of caregiver role. It should be read by anyone with any say about how skilled nursing and nursing homes are funded, run, and for all the employees, volunteers, etc. I don’t know how optimistic I feel about that doing any good toward making improvements but I think it’s important either way.
This is one person’s and one family’s experience but I think many people will be able to identify with this account.
I wish that I could have given this book to my friend who died last year. She got sick less than a year after her father died. She took on a lot of his care and did the same for her mother when she needed it. I think she would have greatly appreciated this book, especially when she was spending so much time and energy caring for her parents, directly as well as coordinating caregivers and doing so much more to ensure her parents’ wellbeing. I’m sad that she never got her own retirement years.
Reading this further solidified my decision to do anything and everything in my power to not live out my last days in any kind of institution. It’s a terrifying prospect, especially if poor and without family/dedicated advocates.
4-1/2 stars
Edited to add: I greatly admire Susan MacLeod’s rigorous honesty and appreciate that there is humor included despite the difficult topic(s).
A tender, insightful, and richly-detailed graphic memoir following the journey of aging parents, as well as MacLeod's own journey managing all the challenges, paradoxes, and conflicting emotions of eldercare.
The story takes place in Nova Scotia (east coast of Canada), and since I wrote about my own father's journey through his nineties in Nova Scotia (The Home Stretch: A Father, a Son, and All the Things They Never Talk About) this book felt very immediate, truthful, and revelatory. It felt close to home.
Eldercare can be lonely and isolating, as well as unexpectedly and absurdly funny, and even after my own experiences I learned a lot from MacLeod's book. She is inclined towards research and reached out to others for feedback and insight. For example, this gem from Old Man Country: My Search for Meaning Among the Elders: Become aware that you will revert to painful patterns of emotions from your childhood.
I didn't know that ahead of time — But I certainly encountered it!
Many of us have similar yet different experiences with eldercare, and this book is great as a source of comfort, community, and consolation, as well as offering advice on dealing with care workers, medical bureaucracy, other residents, siblings, and most importantly and not to be overlooked, yourself.
It is a rite of passage, the privilege of being present during someone's last years. I am grateful for the time I was able to spend with my father in his nineties, and I was also thankful for the experience of savouring this wonderful graphic memoir. Thank you!
Dying for Attention by Susan MacLeod is perhaps my favourite read of 2023. I never would have guessed a graphic novel about the nursing home system would be one of my top reads, but there's a first for everything!
Susan MacLeod shares her personal story of caring for her Mother in the labyrinth we call "Long Term Care." Up here in Canada, things are mighty confusing, enough care isn't given, but they charge an arm and a leg, and all the while you feel guilty about leaving your parent in a home. But, you know deep down, you can't provide the care they need. Susan shares how broken the system is and even gives recommendations for how it can do better. Yet, it seems like nothing will ever change.
Susan's experience is heartbreaking but also eye opening. I worked briefly in a nursing home and left very quickly due to the poor level of care I witnessed. The staff are trying, truly, but there isn't enough funding to have the right amount of staff to give the care those people deserve. It's frustrating, it's incredibly cruel, and it's just not fair. The system is down right broken which will break many peoples heart.
This story is sad but also shows Susan's incredibly strength in a very toughs potion. There isn't another way I could imagine telling this story, because the graphic novel medium makes it feel so much more real (with some comedic images that give a lighthearted feel to such a tough story).
Overall, marvellous! I highly recommend this book. If not to help try to fix a broken system, but to smile and empathize.... We've all had tough health situations to deal with. We are in this together.
Susan MacLeod tells the sad but informative story of putting her mother into long-term elder care in Canada and becoming her advocate as they navigated all the bureaucracy, indifference, and shortcomings of the system. Ironically, MacLeod had been a public relations person for a government health agency, helping to gloss over those same deficiencies.
This is also a family story as MacLeod comes to terms with the difficult relationship she had with her mother and experiences increasing resentment toward and conflict with her geographically and emotionally distant brother.
It's a good primer for anyone who may find themselves in this situation as red flags are waved, action items are outlined, and much advice is given in a format that doesn't allow the reader to get bogged down or bored.
truthfully this was difficult to finish. helpful in terms of understanding Canadian long-term care facilities from someone who experienced them first-hand, but exhausting in that it’s a memoir by someone who did not consider ageism and ableism until they affected her directly. the few depictions of racialized people are also lazy.
Difficult to read sometimes and heartbreaking in others, it made me take a good hard look at what I've done for my grandmother who will be entering this space soon. On top of that, how to navigate the strange relationship I have with my own mother. I wanted this book to have answers and somehow, it not having the ones I needed just points to how big a problem nursing home care faces.
it’s really hard to review a memoir, however as someone who worked as a nurse in a long term care facility I understand where she’s coming from, and I also understand the others. It’s something that I’m glad covid brought up front and center that the way they were budgeting long term care facilities were not ok, and technically still aren’t but it did get a little better :) I do think people should read this though, whether you’re a health care professional or not, points were made.
As someone with professional experience with aging/dying/nursing homes/hospitals, I can see what the author was trying to convey here. However I found it quite difficult to read because instead of being mad at government spending (and at one point even excused it by saying they have so many things to balance), she focused her frustration on the caretakers. As others have noted in their reviews, I didn’t enjoy the “who taught you to speak like that?” comments over and over about the overworked staff. I would be snippy too if I were in their position!
Additionally, I found the flow to be difficult to follow/enjoy, and it could have benefitted to have some extra editing for readability and removing excess tangents.
This certainly hit home. The author’s experience with her mother was pretty much identical to our experience with my mother-in-law - right down to the call bell hidden out of reach - and that journey came to its natural conclusion almost 15 years ago. Which, on the one hand, made this a thoroughly depressing read to realise how little things have changed - for the better - in the intervening years. Shame.
The discussion around the impact on sibling relationships was also bang on… it’s where I am with my siblings in the present moment as we begin to navigate these same waters with my own parents. I took notes about how to deal with my siblings, and my own emotions and reactions to the situation(s) we find ourselves in.
The choice to present the story in graphic novel form was an important one. The format allows the reader to truly walk beside the author - to visualise her journey - to put themselves in her shoes - to see what she sees and experiences - in a way that would have been more difficult - depressing and hard to read - in a traditional text. The simple black and white inking/drawings bring her experience into very sharp focus, and allow for some gallows humour here and there… necessary to be able to cope with the subject matter.
The graphic novel format also makes this a fairly quick and accessible - but powerful - read. It is must-read material - a reminder to all - and I’m thinking especially of politicians and policy-makers - that we must always navigate the world through the eyes of others - and that we must truly value our elders, establishing new relationships with both aging and dying - relationships founded on empathy, compassion and respect.
This is an excellent companion to last year’s Shadow Life by Hiromi Goto. Both highly recommended.
This was an amazing book, and I would highly recommend it. All of us are going to face this issue in one way or another. My husband's parents both passed during the pandemic which led to its own complications. Many of the ones described in this book were ones we were also facing or expected to face. The book is meant to educate but does so in a way that you do not feel bogged down by the information due to the way it is presented. It looks at many additional aspects many people do not consider, including the dynamic of dealing with siblings while trying to find a proper place to care for your aging parent. It offers easy to understand advice, provides further reference material, and has a clever format. Definitely one of the best books I've read in awhile!
This memoir could be the story of our experience, still happening, with our mom in a retirement home. The move, what care is available from who & how much, with other seniors but not really knowing them, nice vs crotchety and the list goes on. Loved it. Spot on.
A clever and informative graphic novel about navigating the perils of the Canadian nursing home system. This novel makes you angry and also makes you laugh!
Since Halloween approaches I read two graphic stories about long term nursing care facilities (just kidding, not for Halloween, but I know most people would rather read slasher horror stories than read about this topic): this memoir from the perspective of a daughter caring for her 90 year old mother that can also function as a guide to many of the issues we all have to eventually face on this topic, and The White Lady, a fictional tale from the perspective of a nurse.
Susan MacLeod's story is hard to read, so complicated. I have an older brother and sister in long term care facilities with dementia, I have a son with autism in a group home. MacLeod in the first three chapters surprises us by being self-deprecating. She admits she never liked older people, she had always hated dealing with death, and she admits she has always been unlikable to a lot of people. She is hard on the Canadian government, on nursing facilities, and on her passive, uninvolved brother, and sometimes herself. I'll bet a lot of nursing care folks dislike this book, but it is true to her experiences. She just wants to act on behalf of her mom, she wants more. She admits ageism is a factor, that people are underpaid, facilities are understaffed, but that sometimes feels like an after though. And this was written before Covid gutted these facilities and left them even worse off.
But this was helpful to read as I myself age. . . . yikes. I appreciate her sense of humor throughout.
It was interesting to see this family going through the health care system in Canada to find appropriate care for the author's mother. The health care system has it flaws, and it can be hard to understand what the health care lingo means as you go through it. There were parts that I found very harsh and judgmental, likely innocent ignorance, while other parts I could understand her frustration. I am happy I read it to the end, as the author comes to find out it's not the workers who are entirely at fault here, it's a systemic issue that the government doesn't seem to want to fix, because it's not an easy solution. One thing she kept saying that really ground my gears was, "Who taught them to talk like that?", as the author became frustrated with what people in the healthcare field were trying to explain to her. At times, I wanted to say back, "Who taught you to talk like that?" There were a few other things here and there that bothered me as well.
Wonderful, Funny, graphic book about a woman’s process trying to care for elderly parents. The mother moves up from independent living, assisted living and eventually a nursing home. Much of the experiences she experienced, I experienced and it seemed uncanny. We are doing so much to make growing older and very negative experience, especially at the nursing home stage. The nursing homes have high staff to patient care ratios, and there is little of an enjoyable life for residents. So much is true, it made me chuckle and feel sad too.
Dealing with an under-covered topic, I wish MacLeod's graphic memoir had been around a decade or so ago when my own mother (& consequently, my family) began her final journey in a typically subpar American nursing home. I at first had a little trouble getting into her simple line drawings reminiscent of James Thurber. But once I did, I quickly tore through the book. MacLeod's final sentence on the final page of a 'Things To Know If You Have A Loved One Entering Long Term Care' checklist: "There will be death."
Having escorted my mother to the grave (her memorable words) and chronicled her ten year decline in comics of my own, I feel deeply connected to the subject matter of Dying for Attention. And as a former government employee just like MacLeod, I truly got that aspect of her experience with the health care burocracy. This is a book that everyone should read.
While I did enjoy this book and some of the ideas the author brings to light, I was also a bit taken aback by some of the negativity surrounding HCWs. I’m a nurse in a SNF and I know I care deeply about the patients and am doing the best I can, often staying several hours past my shift to give better quality care to patients. I think the author does overlook a bit here how systems do not make it easy for staff. I would love to be able to answer call lights within 5 minutes but often that is not the case because we are taking care of so many patients with not enough staff. Or you have a patient who sucks up all your time so you can’t tend as easily to the others. Either way, I think the author should try to take a job in elder care to see what our working conditions are like. Often times there isn’t time for extras beyond the basic cares. Which yes she does recognize some of our struggles as HCWs but the whole call light issue bothered me. You have to wait like everyone else or hire a 1:1 caregiver 😀 and certainly I don’t know what her mother’s facility was like and I can only go off where I work. Not all caregivers are created equal and some are definitely not in the field for the right reasons. However I do think we should approach the issues from the top down because so much of the care we provide isn’t even up to us- it’s up to the people with the budget.
The author/illustrator has been very brave here in showing herself at her worst, and revealing something none of us wants to admit: knowing you are doing something poorly, knowing you are NOT being your most kind, generous, patient, compassionate self, knowing that AND STILL CONTINUING to do it!
It does seem that MacLeod did finally become her better self in many ways, and in a few ways she continued being judgmental, impatient, and blaming. Which is very realistic!
It was also noteworthy that this autobiographical graphic novel shows a medical professional who spends over a decade pretending to know about the status of elder care, and only understands what is really going on when she experiences it first-hand.
WAIT - BE RIGHT BACK
This entire review has been hidden because of spoilers.
A very thorough graphic medicine work about Canada's old age care system from a woman who works in health communications for the Canadian government. As Susan's mother gets older and need 24 hour care outside the home, she deals with the fraught relationship between her mother and the distant relationship with her brother who lives in Europe. The art is very minimalist of just simple lines that rely on the reader to imagine more of how people and things look. There is a focus on experts and talking heads probably because the art is minimalist.
I worked in nursing homes for many years and this memoir was pretty accurate. Things haven’t changed much since I left. Like anywhere else, there are good, caring workers and others not so much. It’s the luck of the draw who you get caring for you each day. Still seems true that no matter how many kids someone has, one or two do the majority of visiting and caring. Although I worked in a different capacity, I believe nurses aides are the backbone of the nursing home and deserve way more pay and recognition than they receive
Highly recommend to anyone caring for aging parents. I've been through it with both my parents and Susan hits on so many aspects I had forgotten about. I appreciate the deeper questions about how the system of Healthcare Healthcare long term care is not set up to retain anyone's humanity. Applies to my US long term care experience. Reading this book was like talking with a kindred spirit who had suffered and triumphed in similar ways.
A painstaking memoir of supporting a parent through long-term care. The author is Canadian, so the system there is marginally less dysfunctional than that of the US, but still suffers under the stewardship of backbreaking budgeteers. I found the last few chapters helpful in the way they deal frankly with the tension between adult children of an aging parent in need of care, and the inevitable uneven allotment of labor, emotional and otherwise.
True Canadian story. "It was a nine-year journey navigating a government without a heart in a system without compassion." A graphic memoir and rueful examination of sibling rivalry, the health care system, specifically long term care, society's attitude towards aging including our own views of the aged. A sad reflection of what health care workers must endure (working short staffed and poverty wages in some places) while being at odds with what families and the aged want.
An intense and somewhat difficult read, both for the poor conditions in nursing homes and for the author's described obliviousness and childishness. She does a good job of working both of those things out by the end, thank goodness for her and her readers, so overall this is a worthwhile read for anyone who finds themselves in the position of placing an aging parent into the care of strangers.
My first graphic book -- and the second scary book I have read about the challenges facing seniors and the ones who care for them while navigating the "failing of long-term elder care systems." These are facts we don't want to face but need to -- as a senior like me facing my own mortality and as a guideline for those with aging parents.