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The Reluctant Caregiver: Missives from the Caregiving Minefields
Not everyone is born a natural caregiver.
One moment, digital journalist Joy Johnston is a cynical workaholic with an underwater mortgage. The next moment, she faces the responsibility of caring for her eccentric mother who's battling colon cancer, just six months after her father's death from Alzheimer's. As an only child, she has no choice but to slap on the latex gloves, and get to know more about her mother — and herself — than she ever imagined possible.
The road from reluctance to resilience is bumpy and splattered with bodily fluids, but it also offers unforgettable lessons. Who knew you could learn how to change a colostomy bag on YouTube, or that hospice nurses like telling dirty jokes? Peppered with snarky humor, vivid observations, and poignant honesty, this essay collection will resonate with anyone drafted into a family health crisis.
One moment, digital journalist Joy Johnston is a cynical workaholic with an underwater mortgage. The next moment, she faces the responsibility of caring for her eccentric mother who's battling colon cancer, just six months after her father's death from Alzheimer's. As an only child, she has no choice but to slap on the latex gloves, and get to know more about her mother — and herself — than she ever imagined possible.
The road from reluctance to resilience is bumpy and splattered with bodily fluids, but it also offers unforgettable lessons. Who knew you could learn how to change a colostomy bag on YouTube, or that hospice nurses like telling dirty jokes? Peppered with snarky humor, vivid observations, and poignant honesty, this essay collection will resonate with anyone drafted into a family health crisis.
- GenresNonfictionMemoir
229 pages, Kindle Edition
Published September 3, 2017
About the author
Joy Johnston
4 books4 followersJoy Johnston is an award-winning author, digital journalist and caregiver advocate. She received a gold medal at the 2018 IPPY Awards for her personal essay collection, The Reluctant Caregiver. She also received the 2015 Rick Bragg Prize for Nonfiction from the Atlanta Writers Club. Her work has been published in Chicken Soup for the Soul and other anthologies. She writes about dementia and caregiving on her award-winning blog, The Memories Project. Her latest project, Slow Dog, is her first children’s book and was selected as a finalist in the 2022 Indies Today Awards contest. She lives in Atlanta with her senior rescue dog and a pair of tuxedo rescue cats.
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Displaying 1 - 15 of 15 reviews
July 12, 2018
A difficult topic addressed with an appropriate amount of humor and honesty.
September 23, 2017
Joy Johnston's “The Reluctant Caregiver” is a compelling reflection on the life of a someone caring for ageing and terminally ill parents and, even more powerfully, looking at family life through the eyes of someone who's parents have passed on. This collection of essays winds its way through early childhood memories to medical mishaps and finally onto life after the responsibilities of caregiving have been ended by death.
While much of the subject matter of “The Reluctant Caregiver” could be considered grim or melancholy, Johnston's humorous narrative voice keeps it engaging. She doesn't hold back when she talks about the hard truths of her experience, mentioning alcoholism and colostomy bags just as easily as she talks about her cats, and this ensures that the reader wants to power through with her rather than giving up when the subject turns dark. The language is colloquial, with a good amount of punny humour and self-depreciation to make up for some of the less than pleasant subjects.
Many books about caring, whether as an occupation or for a family member, talk about the positive sides of the experience or how it came to benefit their lives. “The Reluctant Caregiver” doesn't do this. In many ways, Joy Johnston's story comes across as quite bitter. She doesn't hold back from pointing out the flaws within her parents or hide the terrible aspects of waiting for a terminally ill loved one to die. The language she uses, even with the jokes and witticisms, is angry. It isn't a novel that looks back on the experience and talks about how it made her a better person. Instead, it feels like a cathartic piece and I personally feel that it works a lot better because of that. There are no pretences, no patronisation. It's raw and honest and far more beneficial for that reason.
“The Reluctant Caregiver” is never going to be one of my go-to light reading books. It's an intense piece of writing to work through and, while it feels quite cathartic once it's done, it can be hard to get through. It is, however, a book I would recommend to anyone who is in a caregiving position. The honesty, while harsh at times, is something I found refreshing when compared to novels covering similar subjects.
While much of the subject matter of “The Reluctant Caregiver” could be considered grim or melancholy, Johnston's humorous narrative voice keeps it engaging. She doesn't hold back when she talks about the hard truths of her experience, mentioning alcoholism and colostomy bags just as easily as she talks about her cats, and this ensures that the reader wants to power through with her rather than giving up when the subject turns dark. The language is colloquial, with a good amount of punny humour and self-depreciation to make up for some of the less than pleasant subjects.
Many books about caring, whether as an occupation or for a family member, talk about the positive sides of the experience or how it came to benefit their lives. “The Reluctant Caregiver” doesn't do this. In many ways, Joy Johnston's story comes across as quite bitter. She doesn't hold back from pointing out the flaws within her parents or hide the terrible aspects of waiting for a terminally ill loved one to die. The language she uses, even with the jokes and witticisms, is angry. It isn't a novel that looks back on the experience and talks about how it made her a better person. Instead, it feels like a cathartic piece and I personally feel that it works a lot better because of that. There are no pretences, no patronisation. It's raw and honest and far more beneficial for that reason.
“The Reluctant Caregiver” is never going to be one of my go-to light reading books. It's an intense piece of writing to work through and, while it feels quite cathartic once it's done, it can be hard to get through. It is, however, a book I would recommend to anyone who is in a caregiving position. The honesty, while harsh at times, is something I found refreshing when compared to novels covering similar subjects.
June 22, 2018
JOY JOHNSTON, THE RELUCTANT CAREGIVER—MISSIVES FROM THE CARETAKING MINEFIELD
In the days before antibiotics and antiseptics, doctors and caretakers often relied on herbal brews called “tonics” to help sick people feel better. Tonics might contain homegrown or easily-obtained ingredients that focused on enriching the blood, soothing the lungs, calming agitation or lessening aches and pains. Rather than killing off specific germs or focusing entirely on specific ailments, tonics often were intended to make the body as a whole feel better, to withstand the miseries of illnesses.
In the field of caretaking, Joy Johnston’s THE RELUCTANT CAREGIVER is a tonic. Her accounts of the prolonged decline and demise of her father and then her mother are in many ways sad stories, containing strong complaints and plenty of details about what can make taking care of ill, elderly people both draining and unpleasant. Like a tonic, her story contains tastes that are sour, bitter and sometimes hard to get and keep down.
At the same time THE RELUCTANT CAREGIVER bristles with honesty, as Johnston wrestles with guilt, resistance, and sometimes disgust but keeps carrying out necessary tasks, with grace, honor and sometimes humor. She manages to convey the surreal qualities of facing death with a family member. The grief is substantial but, as anyone who has ever had a serious illness knows, an odd and comforting fellowship forms among small groups of people who learn by experience to find the humor in terrifying events.
Like the stories of their declines, Johnston’s portraits of her parents before their illnesses are scars-and-all, unique mixtures of bitter, sweet and strange flavors. She may well see predominantly faults, but you sense a feeling of honor and affection as well.
Tonics didn’t always work. Sometimes people got sicker and weaker and even died. Those who care for sick friends and relatives may point out that even the complex medications and medical procedures that made tonics a thing of the past don’t always work either. Johnston, though, offers a complicated mixture of strong spirit and dedication, no matter how reluctant, that can prove a tonic to others.
In the days before antibiotics and antiseptics, doctors and caretakers often relied on herbal brews called “tonics” to help sick people feel better. Tonics might contain homegrown or easily-obtained ingredients that focused on enriching the blood, soothing the lungs, calming agitation or lessening aches and pains. Rather than killing off specific germs or focusing entirely on specific ailments, tonics often were intended to make the body as a whole feel better, to withstand the miseries of illnesses.
In the field of caretaking, Joy Johnston’s THE RELUCTANT CAREGIVER is a tonic. Her accounts of the prolonged decline and demise of her father and then her mother are in many ways sad stories, containing strong complaints and plenty of details about what can make taking care of ill, elderly people both draining and unpleasant. Like a tonic, her story contains tastes that are sour, bitter and sometimes hard to get and keep down.
At the same time THE RELUCTANT CAREGIVER bristles with honesty, as Johnston wrestles with guilt, resistance, and sometimes disgust but keeps carrying out necessary tasks, with grace, honor and sometimes humor. She manages to convey the surreal qualities of facing death with a family member. The grief is substantial but, as anyone who has ever had a serious illness knows, an odd and comforting fellowship forms among small groups of people who learn by experience to find the humor in terrifying events.
Like the stories of their declines, Johnston’s portraits of her parents before their illnesses are scars-and-all, unique mixtures of bitter, sweet and strange flavors. She may well see predominantly faults, but you sense a feeling of honor and affection as well.
Tonics didn’t always work. Sometimes people got sicker and weaker and even died. Those who care for sick friends and relatives may point out that even the complex medications and medical procedures that made tonics a thing of the past don’t always work either. Johnston, though, offers a complicated mixture of strong spirit and dedication, no matter how reluctant, that can prove a tonic to others.
June 27, 2018
I really appreciated this book! It had me in tears, laughing out loud, nodding my head in recognition and being angry (at illness, at death) as I read it. In vivid journalistic style, but with searing honesty and dark humour, Joy Johnston’s take on care-giving is a must-read for those in similar situations and for us who are not! The author takes us episodically through the demise of her father from Alzheimer’s and her mother through struggling with cancer. Above all, her accounts are cynically realistic, but warmly written.
The thing that threads its way through the book is summed up in her stark sentence: ‘The predetermined ending smacks of failure.’ In The Reluctant Caregiver we see someone trying to come to terms with the absurdity of death and its attendant situations – both for the one who’s dying and for the caregiver. From comments on the guilt felt to feelings of utter helplessness, Joy Johnston reveals in a haunting, emotive set of essays what it feels like and how it is being a caregiver to two dying parents. She seems to be struggling with the tension between the two extremes of careful control (she is a self-confessed ‘control freak’) and unreserved chaos.
I started this review with the word ‘appreciated’ simply because ‘loved’ seems somehow wrong – but I have to admit to loving The Reluctant Caregiver. It says it as it is, not as we’d like it to be. It is self-depreciating, though we guess that Joy gives care better than she thinks she does! Joy describes the situations so vividly that you think the deaths occurred recently, not years ago. She is honest about her own agonising guilt and her ‘faults as a daughter’, describing herself as ‘the world’s worst caregiver’ – but what fills my mind as I read it is the daughter’s obvious and understated love of her parents (both of whom had their faults), and her attempts at care-giving that clearly went against everything she is as a person. Surely, that is humanity at its best, isn’t it? Yes, I loved this book!
The thing that threads its way through the book is summed up in her stark sentence: ‘The predetermined ending smacks of failure.’ In The Reluctant Caregiver we see someone trying to come to terms with the absurdity of death and its attendant situations – both for the one who’s dying and for the caregiver. From comments on the guilt felt to feelings of utter helplessness, Joy Johnston reveals in a haunting, emotive set of essays what it feels like and how it is being a caregiver to two dying parents. She seems to be struggling with the tension between the two extremes of careful control (she is a self-confessed ‘control freak’) and unreserved chaos.
I started this review with the word ‘appreciated’ simply because ‘loved’ seems somehow wrong – but I have to admit to loving The Reluctant Caregiver. It says it as it is, not as we’d like it to be. It is self-depreciating, though we guess that Joy gives care better than she thinks she does! Joy describes the situations so vividly that you think the deaths occurred recently, not years ago. She is honest about her own agonising guilt and her ‘faults as a daughter’, describing herself as ‘the world’s worst caregiver’ – but what fills my mind as I read it is the daughter’s obvious and understated love of her parents (both of whom had their faults), and her attempts at care-giving that clearly went against everything she is as a person. Surely, that is humanity at its best, isn’t it? Yes, I loved this book!
June 30, 2018
If you have aging parents who are heading toward a potential short or longterm battle with cognitive dementia or have someone in your family who will soon require longterm care, this book is required reading. The subject of caregiving for our loved ones (or even for people in our family we can barely tolerate) is always awkward and kept in that box marked "We'll Cross That Bridge When We Get to it." The problem, as Joy Johnston so sadly, eloquently, and painfully points out, is that day will come sooner than you think or will ever be fully ready for. She captures the daily ups and downs of her father's miserable battle with Alzheimer's and her mother's horrible colon cancer. She knows they will both die from their illnesses and she takes us there, step by painful, tedious, and even funny step. Maybe this book works best for those of us in denial about the fragility and inevitability of the death of our own parents, however long away or soon that will be. If you've worked in any type of a healthcare environment, this book will resonate with you. If you've ever thought, "How will I be able to care for the people or person who raised me, in their final years, months, or hours?" this book will touch you, scare you and prepare you. Johnston's use of in your face gallows humor is refreshing in a book that has the ability to be one big downer. She pulls no punches in her feelings toward her folks and what it takes from her to go through the process of helping them make the transition from this life to the next. Her book will prepare you for what you must face and even give you some hope that you can do what she did.
September 14, 2017
The Reluctant Caregiver by Joy Johnston tells the story of her taking care of her parents during debilitating diseases. In this memoir, Johnston tells of the trials and tribulations, the small joys and the life lessons of being a caregiver.
In this story, Johnston tells her truth in a raw, sarcastic and caring way. There are times where you may snicker, when you feel the heartache or even the frustration with her as she details the events she deals with. There are several parts of this telling of her life that one may even relate to even if you have not been in the same type of situation she has been through. What is extremely special about The Reluctant Caregiver, is that she tells it as she experienced it, not what is expected. The feeling of not being alone in everything you are going through or have gone through is a strong aspect of this book.
Johnston leaves one feeling a new special admiration for caregivers and their strength if you have ever been a caregiver, still are a caregiver or have yet had that experience.
In this story, Johnston tells her truth in a raw, sarcastic and caring way. There are times where you may snicker, when you feel the heartache or even the frustration with her as she details the events she deals with. There are several parts of this telling of her life that one may even relate to even if you have not been in the same type of situation she has been through. What is extremely special about The Reluctant Caregiver, is that she tells it as she experienced it, not what is expected. The feeling of not being alone in everything you are going through or have gone through is a strong aspect of this book.
Johnston leaves one feeling a new special admiration for caregivers and their strength if you have ever been a caregiver, still are a caregiver or have yet had that experience.
December 6, 2017
As with other reviewers, I was torn as to my impressions but overall had to concede a solid 4 stars. The author has an engaging writing style overall, though her cynicism put me off here and there as my personality tends to be mostly optimistic. I do like that she was brutally honest, that's hard to open yourself up like that to others. The background was nice but since the title showed the subject was about being a caregiver, I feel the balance between the back history and the caregiving was more of the former and less of the latter which is disappointing because as a caregiver I picked it up hoping to learn more of the caregiving part and how she dealt with it etc, though I would not expect her to write from my point of view, this is her book not mine, Lol. But, us caregivers love to be reminded that we are not the only ones and love to learn good tips on making it through. Overall though I did enjoy this book quite a lot. I received this book as an advanced reader copy from LibraryThing
June 28, 2018
The Reluctant Caregiver is book that focuses on the author’s personal experiences with being a caregiver for her mother, who had colon cancer, and her father, who had Alzheimer’s. Johnston recounts in a very up-front way about how hard it is to take care of loved ones
What I appreciated about this book is that it was easy to read. It’s sometimes cynical; some parts are humorous, and sad. While the subject matter is very heavy, Johnston writes and tells her story in way that doesn’t weigh the reader down. Reading this book gave me an eye-opening experience about caregiving and what it all entails. I also liked that while the book was mainly focused on the subject of caregiving, it also felt like a memoir of sorts. I enjoyed reading the author’s personal stories about her life and the special moment’s she shared with her parents even despite some of the grim circumstances.
This is an interesting collection of essays! The only complaint is that sometimes her cynicism is off-putting, but other than that I liked the book.
June 19, 2018
I've never related to a book more than I do to The Reluctant Caregiver. As a freelance writer, also with an "illustrious career of writing clickable crap on the Internet" who put off college to care for my sick mother, reading this book was like reading out of my own journal. Johnston is the best kind of writer--honest and raw all while being poetically articulate. Some of the pages were hard for me to get through, only because they brought up a lot of deep buried emotions dealing with caring for and losing my mom. There's nothing more earth shattering than having to care of someone who once cared for you, especially if you had a strained relationship to begin with. But the earth isn't shattered right away, it's a slow gradual cracking that can swallow you whole if you let it. Johnston painted that picture beautifully. I really enjoyed this book on so many levels, even if it did make me sad and nostalgic.
December 12, 2017
Caregiving can be a tough job, and in The Reluctant Caregiver, Joy Johnston lays it all out. The good, the bad and the ugly. Johnston is a keen observer, and she's willing to tell it like it is in this collection of stories. After losing her father to Alzheimer's, she is drafted into the care of her "chatty Cathy" mother who has colon cancer. Not every daughter has a peachy keen relationship with her mother. Add caregiving to the mix, and the challenges multiply. Johnston's truth telling and humor allow us to live through the difficulties with her and, at the same time, surprisingly, they provide a backdrop for a portrait of deep caring and love. I was beguiled by the honesty in this book!
April 4, 2018
Funny, brutally honest, and at times startling, Johnston’s vivid recollections of her times taking care of her parents through their sickness and (sometimes health), was both entertaining and highly relatable. She knows how to write, which is the best part of this memoir. I alternately admired and admonished her for being so self-absorbed, yet, it was clear how present she always was when she needed to be. I am the mother of an only child, and the author most definitely offered a cautionary tale for me. But she also gave me hours of reading pleasure. I’m glad I found this book.
September 25, 2017
"The Reluctant Caregiver" is an honest and raw depiction of the roles of a caregiver. Though the short stories are not in chronological order and some are repetitive, Joy Johnston writes a humorous depiction of something that, in the end, is a heartbreaking tale. It's something that, I think, everyone should read, whether you're a caregiver or not.
February 5, 2019
This books about the authors' experience as a daughter and caregiver for her parents. She gives examples of how someone may feel. She shares the ups and downs that a caregiver may experience. She lets you know it's ok to have mixed emotions.
I highly recommend this book. Thank you, Ms. Johnston for sharing your experience with us.
I highly recommend this book. Thank you, Ms. Johnston for sharing your experience with us.
August 29, 2019
I totally can relate to the things in this book as im a PSW. I got a good laugh and pouted at some of the book as some was sad. I can say the most rewarding thing is to help someone one there last days on earth. Great book.
June 23, 2018
I really enjoyed this collection of essays about caregiving, and the author's experience with caring for her parents as they were ill and eventally passed away.
I liked Johnston's writing style, and felt like I was listening to a friend. I even became emotional at times, shedding a few tears when she spoke about her mother's final moments. They reminded me of caring for my own mother through her battle of cancer, though I never had to experience hospice care because my mother passed quite suddenly.
I would recommend this book to other caregivers and anyone who is interested in reading about the caregiving process. While it is emotional at times, that can be expected considering the subject matter. I also wanted to thank the author, if she ever happens to read this, for sharing her story with the world.
I liked Johnston's writing style, and felt like I was listening to a friend. I even became emotional at times, shedding a few tears when she spoke about her mother's final moments. They reminded me of caring for my own mother through her battle of cancer, though I never had to experience hospice care because my mother passed quite suddenly.
I would recommend this book to other caregivers and anyone who is interested in reading about the caregiving process. While it is emotional at times, that can be expected considering the subject matter. I also wanted to thank the author, if she ever happens to read this, for sharing her story with the world.
Displaying 1 - 15 of 15 reviews