Connecting Caregivers: Answers to the Questions You Didn’t Know You Needed to Ask
Edited by Linda Burhans
198 pages, Skylar Thomas Publishing (June 1, 2016)
Connecting Caregivers is a collection of writings by experts in the fields of aging, dementia, home care and other related fields, offering hard found wisdom and practical resources for caregivers. Ms. Linda Burhans, a caregiver advocate who has facilitated over 1,200 support groups and workshops for caregivers, contributes personal stories from her work and edited the book. She describes herself as the gal who cares for the caregivers.
A Book By Many Authors
Each chapter is organized under one of the three parts: “Learning to Navigate,” “Learning to Cope,” and “Learning to Accept.” Some provide detailed information about practical matters, such as finding the right home care service, while others offer perspectives on changing cultural attitudes towards aging. The topics do vary and each could be published as separate articles on their own. The information from one chapter does not necessarily relate to the following one. Readers may find the book most useful as a reference on specific topics, such as dementia care and the help a geriatric care manager or aging care specialist can provide to families in navigating the “healthcare maze.”
The chapters do not seem to be focused on specific perspectives or angles. Christine Varner’s chapter on signs and symptoms of dementia begins with her acknowledgement that she had trouble finding the flow of the chapter as she began to write, and follows with details about her dad’s diagnosis of Lewy Body disease. Some chapters seem like short notes. The chapter, “The Caregiver “AAA” Dilemma,” was two pages long and urged the reader to ask for and accept help.
Sprinkles of Inspiration and Pockets of Advice
Most of the chapters take on a conversational tone, as if a counselor is sharing advice with you. Ms. Burhans’ touching stories from her work with caregivers are scattered between chapters. Her story about Mike, who dyed his hair and dressed in clothes from his younger days to ignite his wife’s memories of him, is heartrending, while demonstrating how a bit of creativity can help connect with those suffering from dementia. Another memorable story is the one of a bedridden, former teacher who found purpose again in helping a child discover the love of reading.
The chapter, “Power of Story” by Paula Stahel reminds the reader that sickness does not remove a person’s lived past and that many have incredible stories to share. She suggests recording their stories by asking open ended questions and recording the conversations or hiring a professional historian.
Along with the inspirational stories, there is also advice on functional matters such as understanding home care options and legal preparation for incapacity. The chapters discuss the different kinds of dementia, meaningful engagement with those who suffer from it, and transitions to memory care communities. Authors also promotes journal writing and support groups as caregiver self-care tools. One author, Ms. Mary Jane Cronin, offers writing prompts for those new to journal writing.
A couple of chapters (“What Are the Signs and Symptoms of Dementia and What Should I Do?” and “Is a Memory Care Community the Right Choice for My Loved One?”) emphasize that there is “no heroism in doing it alone.” It is not only okay, but imperative, to ask for and accept help from family members in caring for sick loved ones, and to use resources such as adult day care, home care, respite care, and residential programs.
Don’t Forget to Connect With Your Loved Ones
An important message I got from “Connecting Caregivers” is that family caregivers must acknowledge their own feelings (for instance, of guilt, resentment, loneliness, confusion). With acknowledgement, a caregiver may begin to learn to accept what they cannot change and even to “just be” with their sick loved ones.
Ms. Carole Ware-McKenzie’s chapter has a great reminder for caregivers – see your loved ones as people. That’s often forgotten by caregivers as we juggle medical appointments, bills, and chores and sometimes treat them as responsibilities to bear. Ms. Ware-McKenzie writes, “[j]ust realize, when you are looking at the lady in her wheelchair, that is the sum of who she is. She had dreams, goals, and adventures that are still playing in her head.”
“Connecting Caregivers” affirms to readers the struggles of caregiving and offers possible ways to manage stress and challenges, and perhaps to even have fun while doing it.
“The Caregiver’s Journey: Compassionate and Informed Care for a Loved One” by Utah resident Todd F. Cope is a practical guide for caregivers of aging loved ones.
Sprinkled with gentle humor, this brief, caring and concisely written book offers many valuable suggestions and ideas to help caregivers in finding their way on a journey that is common to everyone yet unique to each person and family.
The author discusses a variety of concerns, from dealing with emotions and family concerns, to accepting help and making informed decisions about care facilities at each stage of the aging journey, to accepting death.
Using the analogy of an extended family road trip, Cope divides the book into five parts: “Frequent Delays,” “Relief Drivers,” “Rough Road Ahead,” “Enjoying the Journey” and “The Final Destination.” Each part represents a portion of the trip and contains a brief introduction followed by three chapters of helpful information.
For example, “Part 2, Relief Drivers,” contains these chapter headings: “Close to Home: Determining the Best Way to Deliver Care at Home,” “Venturing Out: Selecting the Right ‘Outside’ Help” and “No Backseat Driving: Allowing Others to Care for Your Loved One.”
Each chapter begins with a real-life example based on Cope’s caregiving experiences, offering glimpses into how a number of elders and their families weathered aging and end-of-life challenges.
Although there are no illustrations, the format is attractive and easy to read. Each chapter features a few pull-out quotes, and some chapters contain endnotes.
There is no profanity, foul language, violence or sexual innuendo in the book.
Cope, who is a registered nurse, has worked extensively with the elderly for more than 25 years. He has authored essays, poetry, articles and novels, including “The Shift,” which was the basis for the television movie “The Last Dance.” Cope and his wife, Denise, live in Spanish Fork.
Can’t We Talk About Something More Pleasant?
By Roz Chast
228 pages, Bloomsbury USA; First Edition edition (May 6, 2014)
Five years after her mother’s death at the age of 97, Roz Chast commemorated her journey with her parents during their last few years in a graphic memoir titled “Can’t We Talk about Something Pleasant?” Her mother was a strong, fiercely independent, and often authoritative woman, “built like a peasant” as she liked to boast. Her father was a sensitive man who was madly in love with his wife and glad to have her be the captain of their life together.
Chast recalled grappling with layered feelings about her childhood and her relationships with her parents, guilt over her own impatience and transfer of the “dirty work” to aides, and frustration at her inability to convince her parents to take action. She constantly worried about their well-being, living by themselves in a Brooklyn apartment and then in an assisted living facility, and how their savings would cover the astronomical expenses for personal and medical care. Chast’s memoir showed the uncertainty of the near end-of-life journey from the perspective of an adult child, in a reversal of roles with her parents.
The book opened with Chast’s attempt at initiating the “conversation.” She vaguely began with “so…do you guys ever think about things?” When her parents feigned cluelessness to her reference, she got annoyed and gave up. Afterwards, she was actually relieved to be able to put off the conversation. Chast’s honesty about her relief at holding off the conversation is refreshing and, I think, relatable for many families. It’s something that should be done, but aging and dying are so very unpleasant and awkward for families to discuss specifically and directly.
Her parents’ reluctance to talk about dying or being too old to take care of themselves is understandable. They grew up in immigrant households and lived through World War II. Their generation’s survival strategy was to “not tempt fate” by speaking about potential horrors. And unsurprisingly, since they had been taking care of themselves for over seven decades, they were reluctant to give up decision making power and allow anyone else to take care of them.
One of the smartest things Chast accomplished was getting her parents to work out their affairs while they were mentally cognizant. They initially hesitated to to share and hand over their financial matters. Chast brought in a professional, third party – an elder lawyer who met with them at their homes and help them put together a will, health care proxy, and power of attorney. She joked that unlike someone else’s child in a story her parents like to tell, she did not go out and buy herself a closet of cashmere sweaters with their money afterwards.
The Beginning of the End
While Chast was busy with her career and starting her own family, she didn’t worry about her parents very much. They had health ailments and were on a gradual decline, but were living independently. However, when her parents turned 90, Chast began to notice that their home was not as clean as it used to be and they seemed frailer. They were moving into “extreme old age.”
The major event that propelled Chast into full-on caretaker mode was her mother’s fall from a ladder. Falls are a serious and costly problem for older adults. According to the CDC, each year, one out of three people over 65 experience a fall, but fewer than half tell their doctor. Like many of those older adults, her mother refused to go to the hospital. After weeks of worsening pain, she reluctantly went to the emergency room. During her father’s stay at her home, Chast learned the extent to which his dementia has been concealed under her mother’s care.
Guilt is a common feeling for many family caregivers. Chast aptly highlighted the cycles of frustration at herself, at her parents, and at the circumstances and guilt. She felt bad for not having more patience for her father’s “sundowning.” Over the course of the day, he became more frantic and paranoid about someone stealing his expired bank books. She felt torn about leaving her parents’ home after her mom’s major fall. On her way home, she wondered if she should have spent the night. But her children were waiting for her, she reasoned. If only her father stepped up, things would be easier. Or if her mother would just stop being stubborn and go to the hospital. She felt like the worst daughter in the world.
Although her parents had been frugal and saved for retirement, there was no way to budget for how much care they would need and really how long they would live. Since Chast was in charge of paying the bills for a growing tab of services, she was always worried about how much longer her parents’ savings would cover the $7,400 a month apartment at the assisted living facility, personal care, etc. She hilariously illustrated telling her mother, with support from the hospice staff, that she was “running out of money.”
Juggling many responsibilities, it is hard for caregivers to research and educate themselves on all matters, from the best medical facilities to the best home care agencies to the best health coverage options. When Chast’s parents moved to an assisted living facility near her home in Connecticut, their retiree health insurance plan based in New York did not carry over. They paid out-of-pocket for medical care except for hospital stays which were covered by Medicare Part A (hospital insurance). Typically when someone has both Medicare and retiree health insurance, Medicare pays first, with the retiree insurance covering the rest. I can’t help but wonder if enrolling into Medicare Part B (medical insurance) might have saved her parents a portion of costs for non-hospital medical services.
For a long while, Chast expected the end after bouts of sickness, but her mother inexplicably turned around each time. Then her mother entered what Chast described as “chrysalis,” the final passive stage when life has been “unduly prolonged.” Her mother slept most of the time, waking up only to drink Ensure. Like a pupa, she did not interact with her environment.
No one knew how long her mother would be in chrysalis. This stage of limbo is often agonizing for families. Chast’s description reminded me of my last visits with my grandmother, during which I’d give monologues while she was comatose. She was like a cardboard cutout of the grandmother I used to know.
During the period near and after her death, Chast hoped desperately for reconciliation and acknowledgement of past hurt from her childhood. She described a heartbreaking visit, when she tried to talk about the distance she felt in their relationship, but disappointingly discovered that the time to mend their relationship had passed. It seemed like the best time for this talk would have been, like the meeting with the elder lawyer to sort out financial and legal matters, before the rapid health decline.
Chast’s intent for the memoir was to share her personal caregiver journey. I’d like to know her if her experience with her parents has changed her plans for her golden years. Was there anything she would have done differently? How will she prepare her children for her aging journey?
Chast honored the journey that she and her parents took together, with humor and candor. Highlights from past conversations, photographs and her mother’s poetry were sprinkled unobtrusively throughout the book. We got glimpses of her parents’ younger selves, unclouded by amplification of their idiosyncrasies in old age. I know that my caregiver journey with my own strong-willed, immigrant parents might follow a similar arc as Chast’s. Her memoir reminds me that my caregiver experience is simultaneously unique and universal.
What does caring for a loved one at home really involved? What does it mean for your family and future? Tens of millions of Americans have had these questions and more as they prepare for this unsettling yet necessary task. “The Family Caregiver s Guide” fills in the informational gaps, connecting the dots between research and real life.
Drawing on the author Harriet Hodgson’s own extensive caregiving experience, “The Family Caregiver’s Guide” provides strategies to care for your loved one, inside and out, as well as for yourself including how to use your natural skills in your new role, and which skills you may need to add. You’ll discover how to set up your home for caregiving, including a safety checklist, equipment suggestions, and words you should know. And for those days that are more than a handful, you ll find positive affirmations, a section on facing and accepting illness, and smart steps at the end of each chapter, in case you need guidance in a hurry.
Caregiving has both rewards and challenges. But through it all, you ll discover what s most important that caregiving is love in action.
As informed and informative as it is real-world practical and thoroughly ‘user friendly’ in organization and presentation, “The Family Caregiver’s Guide” should be considered reading essential for anyone anticipating or already engaged in caring for a loved one in the family home. Of special note are the chapters on ‘What Skills do You Need?’ and ‘Getting Ready for Home Care’. Particularly useful are the three Appendices: Home Safety Checklist; Medicine Cabinet Supplies; Terms to Know.
Simply stated, a copy of Harriet Hodgson’s “The Family Caregiver’s Guide” should be a part of every community library, senior citizen center, and family counseling center instructional reference collection. For personal reading lists it should be noted that “The Family Caregiver’s Guide” is also available in a Kindle edition ($6.99).
Reviewer, Midwest Book Review
Confessions of an Imperfect Caregiver, a moving true story of the seven years Bobbi Carducci spent taking care of her father-in-law Rodger, is a testament to love, compassion, grace and courage in the face of often inconceivable challenges.
At the time Ms. Carducci and her husband took Rodger into their home, they were not aware of his medical history, which included life-long schizophrenia. He also suffered from other medical conditions, including dementia and Parkinson’s, which made Ms. Carducci’s day-to-day experience a kind of rollercoaster ride. In addition to caring for Rodger at home, she proves a valiant advocate for him when he is hospitalized, at times battling with medical professionals to get the care her father-in-law needs or simply to keep him alive.
The bond between Rodger and Ms. Carducci is clear, even though his language capacity is limited. At one point, Rodger says to Carducci, “You’re my best friend.”
Her tale is nothing short of heroic–invaluable for fellow caregivers. None of us is handed a how-to manual on taking care of an ailing relative—we must make it up as we go along, while doing research and advocating for our loved one. “Confessions” is especially relevant at present when an estimated 60 million families are caring for an aging or disabled person at home, and the majority of caregivers are women. It is a must-read for anyone who has a family or has loved another person. A story for us all.
By Erica Herd, Writer, Performer, Co-Author of the solo play, Alzheimer’s Blues
Stairways is a book that tells the true love story between the author, Steven Zarycki, and his wife, Lori. It describes in detail how two young individuals found each other at an early age and loved each other instantaneously. Stairways is also a book about a loving husband’s continuous struggle as primary caregiver for his wife, who was diagnosed with stomach cancer in June of 2012. Stairways is an emotional, passionate journey of life, love, and death.
From the very beginning of this book, it’s obvious the words flow through the author’s pen with ease of the love shared by Steven and Lori. The author recounts the simple things, which creates an inspiring and moving story of true love. It truly is a beautiful tribute by a husband to his soulmate. You can feel the depth of the love Steve had for his other half, Lori. When you read this book, your faith in love and humanity will be reaffirmed.
Love is rather difficult to define. It’s different for everyone, which makes it undefinable. Some will say I know this love, others may say I’d like to feel this love. But no matter, the one common thing amongst us all is how the words all tell us what true love is between two people. This book shows you the ups and downs of what love can be. The downside of love; the loss. People lose things they love every second of everyday. Losing something you love is basically a part of life. Objects, pets, relationships, time, and most importantly people; are taken away every day, all things we love. The reader can sense the spirituality of Steve and Lori and their conviction to the idea they will always be together in soul.
This book is a beautiful love story that is also a lesson in how to be a courageous cancer fighter and how to be a selfless caregiver. Cancer and sickness in general affects so many lives today; and Steven Zarycki, the author of this novel, wanted people to see that. This book is not only a story about love and loss, but it is also a self-help book for caregivers. It shares a wife and mother’s story; but also the journey as a caregiver. It shows the reader various ways to deal with stress, anger, and sadness; all while having love in your heart. Life is very unfair to people one would say, with some many negative things happening each day here on Earth, but sometimes it’s those unfair situations that bring out the good.
Do yourself a favor, buy this book. Read it, think about what it says to you. Laugh and cry with Steve and Lori. Cry with the author at the end. Take it all to heart. Just buy it and read it all for yourself. You will be happy that you did. In the end it’s not about death, but rather how to live and love; which this book will show you. We are fortunate beings to be able to love and loss.
ByAlexis Paige Zarycki
Having an illness is often a very traumatic experience and being a caretaker of someone in this position can be difficult and emotion-inducing. In these instances, it becomes really important to see depictions of a slice of life for people with illnesses and how that affects their lives and the loved ones, in cinema. Below, I have compiled a list of recent films that shine a light on illnesses in ways that are raw, real, emotional and enlightening.
Still Alice is a touching film about a renowned linguistic professor, Alice Howland, who has been diagnosed with Early-Onset Alzheimer’s Disease and her journey with the loss of her once beloved words. Alice is not alone in her struggle however, her family– three grown children and her husband– help her through heartache and remind her that she has their help the whole way. It is an exemplary tale of dealing with Alzheimer’s and how caregivers could help with support and love.
The Fault in our stars is a book-to-movie drama centered around teens,Hazel and Augustus. Hazel has cancer and Augustus has a prosthetic leg. Through their illnesses they find strength and love in each other. It’s a heart-warming movie that accurately depicts what it is like to live with these conditions and what it takes to get through life on a daily basis.
Charlie Fineman, the main character, suffers from PTSD (Post Traumatic Stress Disorder) after losing his family in the 9/11 attack. He quits everything and recedes into himself. His old college friend, Johnson,comes into his life by chance, and through friendship and determination, and recruitment of a therapist, Johnson helps Charlie come out of seclusion and into some semblance of happiness.
Pat Solitano, the main character, is ordered to move back with parents after a past incident and is diagnosed with Bi-Polar disorder. Pat tries to deal with his disorder, and the audience is privy to the effects of the disease. Pat also ends up in a strange relationship with Tiffany, who also suffers from depression. Together, they look for happiness and a place to feel less weighed down from their conditions and diseases.
A married couple are faced with many challenges in their decision-making when it comes to providing a new, better life, while also caring for a deteriorating parent who has Alzheimer’s disease.
The story is one about unconditional love. A terminally ill father helps his autistic son learn the necessities for life on his own. It is a movie that gives tribute to the love parents show to their children and how they are willing to give them support and guidance, no matter the circumstance.
This film is a real-life account of a journalist who was left paralyzed in all parts of body but his left eye, after experiencing a massive stroke. Besides having Locked-in Syndrome, he is also non-verbal. Through this,his ex-lover, new-lover/mother of his children, and family, all come together to help him with his illness. It’s a film that explains the inner thoughts of those with the condition and how family can help their loved one through hardship.
50/50 takes a different approach to cancer by taking a comedic and offbeat approach to dealing with the disease. Adam, the main character, with the help of his best friend, mother and therapist, finds out what really means the most to him in his short time left of life.
Though the story is not new, what saves this film is the acting. It follows the life of Marissa, the mother of her ill-son, who has leukemia. In her search to find a match for Jack’s surgery, she finds love and happiness in an unexpected way.
Though there are sometimes moments of doubt and uncertainty in caretaking, seeing depictions of this in films is a great way to learn more about the diseases or conditions, bring attention to people in these situations and offer some support, guidance, and understanding to those who need it. It is a piece of Hollywood that says: you are not alone.
Sometimes books are the only way to escape. Even if it’s for a few minutes, the pleasure of reading relaxes one. Whether it’s fiction or nonfiction, books reminds us of something we sometimes need to know, we are not alone.
A Time for Dancing
By Davida Wills Hurwin
Love is one of the few comforts in life. Being special to someone and having that someone special we absolutely adore. It doesn’t always have to be romantic; it could be a friendship that just touches the heart. A Time for Dancing is a dear book because it’s a fiction that speaks of an experience that is very real to humans. Sam and Jules are inseparable best friends ready to face life after high school together, but they never saw illness coming until Jules’s suddenly fell sick. Then they discovered it was cancer. Every friendship will be tested and tried but only true friendship will stand. This is a story of friendship, love, loss and life. But like all things eventually comes to an end, the story ends. Its memories however never leave the minds of readers that simply fall in love with it. Read this heartbreaking yet heartwarming story to find out how these two friends managed to navigate the trauma of life and even find a cause to celebrate till the very end.
By Melissa Grijalva
What happens when the thing you hate begins to happen to you? She hates love but got exactly that, love. Our heroine in this book (if we choose to call her that) can be summed up in one word, angry. Dellia is angry to the point of violence, she’s suicidal. Why author Melissa Grijalva would choose to make this girl the main character of her book did not make sense until it began to. The shocker of this story is that readers fall in love with this very flawed teenage girl as they continue to read her story, a story she has no qualms about sharing, up to the very last embarrassing detail. The book as it unfolds begins to take meaningful shape and readers begin to empathize with Dellia, her insecurities, pain and venerability are very familiar. This is a book that would make one cry and laugh as well. The best part, it’s a love story.
By N.K. Smith
As twin brothers, these two could not be further apart. Adam is shy, introverted, and awkward, while his twin brother Aaron has the celebrity personality. Adam was not the popular one of the two brothers, but he was a talented drummer. Only he never lets other see how talented he is because he himself does not see just how talented he is. Then emerges Olivia on the scene, and everything changes like it does when a guy meets a girl. They became friends, she likes him and he likes her, but so does Aaron. Will Adam stay in his shell and back down for his “celebrity” brother or will he fight to discover the possibility of life outside his cocoon? Read this wonderful book to find out.
By Jenn Marie Thorne’s
When speaking of a complicated love story, this book is full of it. But the love story is not the only thing that makes this book great, it’s everything. Kate never knew she had a father until her mother died and her father shows up. What more? He’s not just any man. He’s a powerful politician running for U.S. President. Before Kate knew what was happening, she finds herself joining a new family she didn’t know exist, campaigning for the father she barely knows and falling for a guy who may be wrong. And on top of that, there’s the spotlight of being a politician’s love child. How does Kate deal with all of these? Read this new book to find out, it doesn’t matter whether or not you love politics, this is a book readers will fall in love with. For a contemporary novel, it deserves a five star. It’s heartwarming, funny, and it’s a very good read.
By Gary Soto
Do ghost really exist? This is a book that would make you think about that question again. This story is centered on a ghost who falls in love with a ghost. After 17 years old Chuy was killed, he finds himself looking down at his own body, and then it dawned on him, he’s a ghost. Imagine life being more interesting for a ghost that a living human, this is exactly what happens to Chuy when he finds himself falling in love with a fellow ghost. This story is funny, touching, meaningful and certainly interesting.
Most of us were ‘volunteered’ to do our caregiving sessions and the majority of us entered with no knowledge of what would transpire. It definitely became ‘on the job training’. If we had known how to access information on how to do everything, it would have eased our work, private lives, and relationships with everyone including the one we were giving care for. If we had known. The knowledge would have saved time, energy, money, STRESS, and would have enabled us to be more certain of what to do, not fumbling around praying that it would all work out.
While I found Rick Lauber’s “Caregiver’s Guide for Canadians” after most of my caregiving was done, I knew when I read it that I had found ‘the pearl of great price’. All of the above situations would have been attended to in significantly better ways because of all the excellent information in this book. Following the book’s initial publication — when I first read it and immediately purchased copies for each of my family and those friends who were starting their caregiving journeys – it has been reprinted and released in second edition. This second edition came out in 2014 and contains a new chapter (Chapter 10) on “Caregiving versus Career’ as well as updated caregiving statistics.
Not only does Rick share his personal story (caregiving for both parents for many years until their deaths) and how this affected his personal and professional lives, but gives information on types of caregivers, caregiving from a distance, finding suitable accommodations and moving the loved one(s) when needed. He deals with working with other family members, visiting a loved one, mobility aids and safety devices and even finding joy in caregiving. There are several other first class chapters on the documents required and caregiving checklists and worksheets.
There are many resources listed that caregivers can access to make life easier. Many of these suggestions (at local, provincial, and national levels) a caregiver may not have thought of – caregiving is an extremely busy job after all and one usually only finds out what information is needed when a situation has become acute and rushed.
Rick Lauber’s book is the best resource I have discovered to make a caregiver’s life an easier life to live.
An important theme that Rick reiterates throughout the book is that the caregiver has to look after him/herself first in order to do the best job for the loved one.
Unfortunately, I found out about the truth of that the hard way and it took many years to recover from the burnout.
Statistics I read stated that over 60% of people will be a caregiver at some point in their lives.
As caregivers, we wish to do the best we can for the person we are caring for; this book would be of value to anyone who’s asked to step into a caregiver role.
And those of you who think that just because it says “Caregiver’s Guide for Canadian’s”, it won’t be valuable in your life as you are not in Canada – well, many of the situations in caregiving are universal – no matter where you are living and no matter what health condition you are dealing with you will still find fantastic information suitable to your needs.
I have at least thirty other books on ‘caregiving’ and honestly believe that Rick Lauber’s book is the best resource I have discovered to make a caregiver’s life an easier life to live.
I cannot emphasize enough the incredible help this book could be to a prospective, new, and/or current caregiver and sincerely recommend that each person investigate its worth.
You can learn more about Rick Lauber on his website: Caregiver’s Guide for Canadians, his Facebook page or Twitter account.
“If you’re feeling stifled—like you can’t breathe under the heavy weight of medical crises, family conflict, or fear, you have made a wise choice to read this book.”
Speaking with Michael Bloom is like taking a big gulp of fresh air.
And fortunately, his written words have the same effect. So to read The Accidental Caregiver’s Survival Guide: Your Roadmap to Caregiving Without Regret is to have your hand held while you are gently guided through the mire of stress, fear, and loss.
Actually, scratch that.
You’re not being led by Michael Bloom’s words– you’re being empowered to lead yourself. That’s the reality of caregiving. We aren’t alone but we are mostly doing this by ourselves. We might be 65 million strong but we’re still in crucial need of visibility and a voice. Hand-holding is sweet, but Bloom gives us legs to stand on.
If caregiving came about unexpectedly for you– or you feel like you’re going in circles after years of caregiving– the message you’ll find in The Accidental Caregiver’s Survival Guide is clear, concise, and powerful.
We suggest you read one chapter a day– let go of that heavy weight, one step at a time.
“All of a sudden I realized caregiving is the great equalizer in our society.” – Sherri Snelling
Almost one third of Americans care for a friend or family member. That puts today’s estimated number of caregivers at 65 million. With aging baby boomers and longer lifespans for those living with chronic illnesses and disabilities, in less than 20 years the number of caregivers is expected to double. While health conditions that affect far fewer people have dominated fundraising efforts and media coverage, the enormous population of caregivers is, for the most part, silent. This enigma is not lost on Sherri Snelling, whose new book, “A Cast of Caregivers,” addresses two hurdles to help caregivers find their voice: discovering they’re not alone and identifying as a caregiver.
And what better way to find we are not alone than to hear the stories of celebrity caregivers? Some might be tempted to rule out the experience of those with money and fame because they couldn’t possibly know what it’s like to struggle with the financial and social insecurity of 24/7 caregiving. Perhaps that reasoning holds true in some cases. But caregivers all face a similar upheaval in their lives and struggle with painful emotions. Besides, the enormous costs of healthcare can drain any caregiver’s bank account and the apprehension people have around sickness and suffering can isolate almost any caregiver from his or her social circle. As Sherri Snelling puts it, caregiving really is the great equalizer.
Fully aware of a caregiver’s time constraints, Snelling wrote “A Cast of Caregivers” to be full of short, digestible and empowering stories. Personally, she had me at “Holly Robinson Peete.” I was busy watching Barney during the run of 21 Jump Street and Mad Men always won out over The Apprentice, so Holly Robinson Peete was previously unbeknown to me. But reading Holly’s story felt very familiar. She’s a sandwich generation caregiver like any other, who cared for both her father with Parkinson’s and her son with Autism. Her situation is harder than most but by no means unique. In sharing her story, Holly has helped many caregivers feel less alone in their world and allowed others to identify their experience as caregiving.
As we paint the portrait of a caregiver, we cannot forget all the stars who shine a light on the caregiving journey. Building off of their stories, Sherri Snelling has written an exceptional book that caregivers will actually want to read. While handbooks may be helpful to reference, emotional comfort for the caregiver is often found in relatable, empowering, and inspiring stories. Snelling’s “A Cast of Caregivers” delivers with these honest heartfelt accounts.
As caregivers, we represent a geographically, racially and economically diverse population. Snelling points out that we will only find our unified voice once we have identified ourselves with a shared trait: as a cast of caregivers on the same stage.
In caregiving, we don’t “fix.”
Caregiving isn’t necessarily a problem that can be solved, or if it is, it comes with serious or unwanted implications. Once you’re touched by caregiving, you can’t be untouched by it. That’s why we cope with the role of caregiver, not cure it.
The question then becomes:
How do we cope with a role that doesn’t allow much time or energy for coping?
First, we learn and do what we can. Next, we ask for the help we need. Finally, we trust that we’ll make it through. The finer points of these steps are beautifully and comprehensively covered in Dr. Nanette J. Davis’s “The ABCs of Caregiving: Words to Inspire You.” For both caregivers and the bereaved, “The ABCs of Caregiving” provide readers with short, easy-to-read commentary on the components of caregiving. However, the real beauty of this book lies in its spiritual guidance, particularly for those caregivers who feel overwhelmed and lost.
For the religious and non-religious, spirituality is hard to cultivate and even harder to put into practice. Our pre-caregiving spiritual beliefs can feel ill suited to face the challenges of caregiving. So we need a new set, or even a refined set, of spiritual guidelines. That’s where Nanette Davis steps in. Drawing on personal experience as well as the experience of sixty other caregivers, the “ABCs of Caregiving” helps you recognize, acknowledge and accept the difficulties of being a caregiver.
Broken down alphabetically, Nanette covers topics from Breathing (we’re HUGE fans of this technique) to Survivors guilt to Validation. She draws on many spiritual and religious teachings across several cultures to develop a set of spiritual guidelines designed exclusively for caregivers.
This is a must-read for the caregiver in need.
Donna’s son, Nicholas, was born with severe disabilities and consequently needs complex medical care.
“The great dignity at the heart of Thomson’s book is the profound belief not only in the intrinsic value of each and every human life, but also the conviction that all people, whatever their limitations, have the potential to live lives that build on their capabilities and maximize their choices and freedoms.” – Nora Gold
It was a fortunate day indeed when I stumbled across Donna Thomson’s blog, The Caregivers’ Living Room. Intelligent, honest, thoughtful and deeply compassionate– Thomson is not only an incredible advocate for her son but for all caregivers and special needs children. She’s not shy about approaching the ethics and philosophy of disability discourse, a topic that most are weary of or fortunate enough to not have to address it. Naturally, “The Four Walls of My Freedom” is a beautiful blend of everything Thomson does best.
The back cover says it perfectly:
The Four Walls of My Freedom is a riveting and redemptive family memoir. Donna Thomson’s vivid descriptions of her own experience in treading delicately through daily care, medical emergencies and the medical bureaucracy as she and her family cope with her son Nicholas’ cerebral palsy are both inspirational and instructive.
From the first tentative diagnosis to Nicholas’ celebration of his 21st birthday last summer, Thomson examines how she and her family have tried, with various degrees of success, to cope with Nicholas’ needs, while at the same time ensuring that their lives—as well as Nicholas’—have value and dignity.
Thomson’s own experience with adversity takes on new meaning when viewed through the lens of Nobel Prize-winning economist Amartya Sen and other philoso- phers’ roadmaps of how to realize a good life against all odds.
Donna Thomson’s brilliantly written family memoir provides a strong, original message that touches on the lives of anyone caring for the needs of another. [/blockquote]
If you think about special needs or disability at all, this is the right book for you.
If you’re a caregiver facing the difficulties of navigating a society that refuses to acknowledge (through language or policy) children with special needs, Thomson’s story will help uncover advocates on your side. Finally, if you’re a parent who wants a good life for your kid “The Four Walls of my Freedom” will resonate deeply with you.
“The Four Walls of My Freedom” is a thoughtful and thought-provoking book that describes Donna Thomson’s first 21 years mothering a child with cerebral palsy, and it raises some important questions about the fundamental obligations of the state to provide for its most vulnerable citizens. – Literary Review of Canada
What defines the life of a caregiver? How does it start? When does it end?
In her memoir, “One Hundred Names for Love,” Diane Ackerman looks at her own caregiving story through a microscopic viewfinder and provides the reader with enough anecdotal data to publish a study on what it means to be a caregiver. It is a deeply personal, honest, and moving narrative—a close-up look at another caregiver’s life, a perspective we rarely see.
The memoir opens on the day her husband, Paul West, has a massive stroke— and, consequently, the start of her caregiving journey. He suffers from global aphasia; a condition uniquely “tailored to his own private hell.” He is lucid, albeit confused, desperate to communicate but can’t say more than one word: “MEM.” Both Diane and Paul are writers, wordplay lovers and avid readers so Paul’s aphasia feels like the death of the husband she knew, only days before. Diane has little time to process her grief before Paul moves back home and she becomes his full-time caregiver. Paul is a hazard to himself, even in the hospital. How will he survive the chaos and unpredictability of home? He is unable to swallow liquids without it travelling to his lungs, has limited use of his right hand, and is perplexed by everyday tasks (such as shaving or using the toilet). Diane must assist him with all of this. And the journey begins.
[blockquote]“Where was the tutelary angel who should descend at such times and restore the everydayness of things? I felt acutely unqualified. I hadn’t volunteered for this job, and never would have, given how much was at stake. I didn’t want to be responsible for my loved one’s life.” [/blockquote]
“Caregiving takes a colossal toll and I was feeling its legendary strain.”
Diane’s experience as a caregiver, even with her circumstances under a magnifying glass, is one that almost any caregiver can strongly identify with, particularly with her range of feelings: ill-equipped, overwhelmed, guilty, and exhausted. There are many commonalities among caregivers and Diane explores them all. Friends and family no longer ask her how she’s doing, but rather how Paul is doing. She feels shame for worrying about how she will maintain her old life with these new responsibilities. Finding time alone is a struggle. Her “caregiver stress” is a result of “heaping a brain with more executive tasks than it was designed to handle.” Diane grieves for the husband she once had and travels along the path to acceptance of the husband she has now.
Paul’s progress is slow. And finding a balance between life and caregiving is painful. But eventually things begin to look up. After some seriously grueling work, Diane and Paul begin to embrace their new life. They discover humor and play in Paul’s aphasiac speech (one example of his odd, involuntary word combinations: “Lovely Ampersand of the Morning,” a pet name for Diane). Today the two “unwrap one day at a time, treating it as a star-spangled gift.” The caregiving journey never really ends for Diane but she forms a truce with the journey.
“Life can survive in the constant shadow of illness, and even rise to moments of rampant joy, but the shadow remains, and one has to make space for it.”
We think you’ll enjoy “One Hundred Names of Love” because…
… of Diane and Paul’s crafty wordplay
… reading about someone else’s life feels like making a new friend—someone who understands what you’re going through
… you’ll learn a lot about the brain and how it works
… of the beautiful writing and the exploration of language
… you don’t need to be a caregiver to enjoy this book
… the general tone of the book is uplifting and optimistic
… you’ll love Paul and Diane’s eccentricities, but mostly the love they have for each other
Diane and Paul Ackerman in Palm Beach, Florida. Photograph: Josh Ritchie/Polaris
Source: The Guardian
In a nutshell, Susie & Herman is the story of a son’s heartwarming memories of caring for his mother and step-father, as well as the life lessons he learned along the way.
We recommend it for…
…the beautifully written, oftentimes humorous, excerpts of Smith’s life with Susie and Herman
… gem quotes, like this: “I learned that, above all, caregiving is about dignity.”
… powerful insights, like this: “I have seen firsthand that caregivers are one of the greatest assets that our society possesses, providing support that would otherwise fall to the state.”
… the “Post-Scripts” that follow each memory—they impart the lessons Smith has learned along his caregiving journey
… the ease of read– the short, personal essays make it the perfect book to abruptly stop and start up again later.
Susie & Herman: A Story of Love and Caregiving
Author/Editor/Compilier: L.B. Smith
Susie & Herman is a memoir of the ordeals and adventures Smith encountered as family caregiver for his mother and step-father; incidents similar to those that other caregivers face daily. It is a reminder to caregivers that if they deny the anger, frustration and sadness that are a natural part of the task they have undertaken, then the negative effects of those denied feelings will intensify and harden into resentment, pessimism and contempt. This book is about dignity. Susie and Herman will help readers discover that, by lighting a candle through our empathy and compassion today, we each can illuminate the darkness of the specter of our fears of tomorrow… the aging process that awaits us all.
Self-care, take care of yourself, self-care, self-care—okay, we get it. How many times can a caregiver hear this before s/he gets sick of the phrase? Self-care articles glance over the logistics (and financials) of respite care; repeat the same familiar directives (eat right, sleep right); or miss the point entirely. Walk a day in our shoes: see how easy it is to carve out time for ourselves, when our day is spent taking care of others. It’s no wonder many caregivers roll their eyes when the subject of self-care approaches.
So it’s with a considerable amount of sensitivity that I draw closer to this article’s focus: a book on self-care. Full Cup, Thirsty Spirit, written by Karen Horneffer-Ginter, doesn’t take time for granted. Nor does it make self-care out to be an easy practice:
The idea of self-care is so simple and basic yet it can be one of the most complicated journeys we embark on…. I don’t want to insult people by implying they don’t know the obvious fundamentals of caring for a human body (like proper eating, exercise, and rest). On the other hand, I don’t want to annoy them by suggesting these acts of self-care can easily fit into an already-busy life.
Making space for ourselves can feel like sticking a hefty hardcover on an overcrowded bookshelf. And the harder it is to do, the more you need it. Horneffer-Ginter understands space and time constraints firsthand so she knows how difficult it can be. But it’s still crucial to our health and happiness.
We start slow. Literally. After a doctor’s appointment, try walking at half your normal speed back to the car. Of course there are places you need to be but maybe there’s one day you don’t. If we can “move slowly through the day life feels more magical.” We are hardwired to react to life quickly but if we give ourselves a moment’s pause before responding, our actions and words are more deliberate, less prone to mistakes.
For the caregiver that can’t get away, Horneffer-Ginter suggests several ways to take a break inside the home: Light a candle; let out a sigh; find a relaxing scent. Even though you won’t feel as nourished as a full night’s sleep, or an hour-long bath, you’re still taking a moment to yourself, building a space to release some of the stress that has been built up during the day. Full Cup, Thirsty Spirit invites the reader to envision how this lesson would take shape in his/her life with “Practice” guides at the end of each chapter. “Given the circumstances of your life, what activities would work best for you to take a break?”
And here’s where Horneffer-Ginter differs from the typical self-care advocate: she concedes that sometimes there are those unfortunate periods where it is genuinely impossible to take a break. Recognize those. “Otherwise, we may end up adding more tension to the situation by feeling bad or guilty that we aren’t taking care of ourselves…” In those times, we need the unshakable faith that we will be okay; we’re going to be okay.
Full Cup, Thirsty Spirit is filled with so many more precious and practical suggestions to more effectively take care of ourselves. It’s a message caregivers need to hear: it’s possible. Here’s how…
First off, I want to thank Wisdom Publications for providing us with a copy of How to be Happy by Lama Zopa Rinpoche. I love independent publishers and it’s great to be able to explore their wonderful publications. Secondly, let me say that I am not a Lama, nor Siddhartha reincarnated– if you can believe it. Buddha once said: “Believe nothing no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own reason and common sense.” I have found some teachings in “How to be Happy” that don’t ring true for me and the stories I have heard from caregivers. I wish to dissect these teachings as they apply to caregivers and I hope that you will examine them with me.
Here are the teachings that agree with my own reasoning and common sense:
- “Your mind has the potential to stop the problems that come from your mind. And yet the same mind that brings the problem doesn’t stop the problem, but another mind–another thought, another attitude– can stop all problems and bring peace and happiness (3).”
Totally. I’d say 90% of my problems are in my head, with my thinking. It took a lot of work to realize that though!
- “Always strive to improve your mind, improve your attitude (11).”
I have a hard time living a static life. For a long time I thought that meant I had to constantly be moving around, making big changes, experiencing new, external circumstances. I understand now that I can have repetition without stasis. When I engage my mind and work on improving myself, I quell the restlessness. Big changes are usually a band-aid for the little changes I need in my thinking.
- “The way to solve the problems in your life is to open your heart to others (27).”
Sharing, sharing, sharing… It’s the best way I find to release myself from shame, confusion, pain, guilt, anxiety and all of those negative feelings that clutter my head. Opening your heart meaning let yourself out and others in. For me, an open heart manifests itself in reading, writing, and talking.
- “In every interaction: be careful, be kind (37).”
It’s impossible to know anyone’s story, the reasons behind their actions– the love that becomes pain, the pain that becomes anger. Carefulness and kindness is simply a good approach to life for me, even if others may find an easier path by being rude or hurtful.
- “Practice compassion even if no one else does (38).”
Okay, here’s where the trouble starts. A lot of the teaching encourage the reader to focus on others rather than the self. This is something I agree with in my own life– being of help to others. But the teachings as applied to caregivers seem… well, difficult.
- “Remember that your life is for others (49).”
Caregivers are usually highly aware of this. But does this take away the conflicting emotions and the physical burden of caregiving? No, that will be there whether you acknowledge your caregiver status or not. It seems caregivers need the inverse of this statement: “Remember that your life is for you.” Consider this excerpt from a post from Caregiver Support Blog:
“I got to the hospital and Mike was doing fine without me, flirting with the nurses. I knew he really didn’t need me there, but I needed me to be there. He was released and we went home, him feeling sore from the whiplash, me being angry and resentful towards my mother-in-law. Even though it all worked out, I was still angry at being put in the position that I had to choose.”
- “If you want to be loved, love others first (73).”
Almost every magazine and self-help book on the shelves suggest the opposite. Love yourself before you can love others and be loved. I’m still deciding my feelings on this one… Like mostly everything else, it’s not a clear-cut issue. I think we need to love ourselves before we can love someone else, but sometimes it takes someone else loving us for us to see that we are loveable. Maybe the key to this teaching is “first.” It doesn’t say “only.” Can I suggest an appendage? Perhaps, “while you are learning to love yourself?”
- “Transform all undesirable conditions by voluntarily taking up all difficulties (25).”
Excuse me? Haven’t caregivers already taken up all of the difficulties another faces? How can this be transformative? Aren’t the difficulties the undesirable conditions? I’m at a loss with this one.
- “Transform every problem into the medicine to cure the chronic disease of self-cherishing (56).”
From what I understand, Rinpoche uses the term “self-cherishing” to refer to self-centered behavior. So we’re looking to cure our self-seeking motives. This is difficult advice to give to caregivers who are, by definition, in a selfless role. In fact, the advice given to caregivers most frequently is to remedy problems with self-care. Let’s flip this teaching around too.
“How to be Happy” provides the reader with wonderful insights into impermanence, compassion, wisdom, and human interaction. But many of the teachings of selflessness seem counter intuitive for caregivers. What are some of your “teachings” for caregivers?
Surviving day-to-day trenches and finding freedom in the un-sexy
Allie Axel, Media Director
These days, almost everything and everybody relates to caregiving.
Including David Foster Wallace?
Yes, including him.
Upon re-reading “This Is Water” for the oh-I-don’t-know hundredth time, the message struck me as incredibly relevant to caregivers. Or rather anyone who experiences stress, anxiety, and fear, as well as deep compassion, love, and care on a consistent basis.
In “This Is Water,” David Foster Wallace describes a way of life.
It involves finding compassion.
It involves taking another look.
Wallace tells us that when you go to the grocery store, “you can choose to look differently at this … lady who just screamed at her little child in the checkout line – maybe she’s not usually like this; maybe she’s been up three straight nights holding the hand of her husband who’s dying of bone cancer…”
Because we never know who is caring for:
Photo credit via
her partner with bone cancer,
his mom with early-onset dementia,
their wheelchair-bound grandfather,
their sibling with cerebral palsy.
But we do have the ability to create a narrative for another that induces empathetic feelings rather than choosing to believe the story that our brain tells us: that this someone is purposely getting in our way.
Is this thinking worth the extra effort?
Wallace asserts that compassionate narratives (whether they are imagined or not) lead to actual compassion, in turn granting us “real freedom.”
…the [freedom] that is most precious you will not hear much talked about in the great outside world of winning and achieving and displaying. The really important kind of freedom involves attention, and awareness, and discipline, and effort, and being able truly to care about other people and to sacrifice for them, over and over, in myriad petty little unsexy ways, every day. That is real freedom.
Caregivers have developed a profound sense of Wallace’s “freedom” because they show up for those in their care repeatedly. The montage of a caregiver’s daily routine might not be “sexy” enough to feature on the latest hospital drama– caregivers aren’t always putting out fires or making last minute, life and death decisions.
But they are, on a daily basis, living in “awareness of what is so real and essential.” Caregivers make it through the “day-to-day trenches” with the understanding that their role has meaning.
Not only do their loved ones depend on their care, the nation’s healthcare system does too. Although the term “freedom” seems counter-intuitive to describe a population so depended upon, the caregiver is “free” from the selfish behavior “hard-wired” into us as humans, revealing our tendency “to see and interpret everything through this lens of self.”
Caregiving takes the admission and honesty that Wallace believes to be the “capital T Truth” of existence.
With every little sacrifice, with every un-sexy task, the depths of a caregiver’s empathy, compassion, and love only deepen each day. The narrative Wallace offers promises freedom through responsibilities met and compassion through choice, qualities demonstrated by caregivers on the daily.
Although difficult to measure the precise reach of the program, the Twelve Steps have helped people all over the world recover from addiction, trauma and loss. The main frailties of our society are often those with the most effective Twelve Step programs: gambling, alcohol and drug-addiction, violence, and eating disorders. The Steps can reshape almost any circumstance in life that becomes overwhelming or unmanageable. Stress and anxiety, life feeling out of control, the difficulty of the day-to-day—these are examples of a caregiver’s unmanageable life that Pat Samples was aware of when she applied the Twelve Steps to the caregivers’ circumstance. With the help of Diane and Marvin Larsen, Samples has transformed the approach to self-care by exploring the emotional state of caregivers through the lens of the Steps.
Ways to practice self-care have become trendy topics among caregiver resource sites. However, the tips provided are largely repetitive or irrelevant. Sometimes there really isn’t enough time in the day to do yoga. Or enough resources available to provide respite care. Often the guilt of self-care can create an imbalance of one’s perceived need for self-care. “Take a vacation” can be repeated until the cows come home, but how often will this advice be taken as seriously as the fear of being unavailable for a loved one in need. This is where the push for self-care falls flat. No matter how many creative ways there are to get a moment alone, the problem of WHY the caregiver is still operating without long walks or meditation sessions remains unaddressed.
Enter the simple and effective solution expressed in Pat Sample’s “Self-Care for Caregivers: A Twelve Step Approach.” The book dives past the typical self-care solutions to tackle the emotional upheaval caused by the extreme pressures of this role. By admitting powerlessness over the care-recipient, one can find comfort in relying on a power greater than his or herself. This requires us to rely on a spiritual force that can be understood however the we choose. Regardless of religious beliefs, Samples proposes that the caregiver can rely on the idea that he or she is not in the journey alone. This idea is key. Loneliness is a frequent emotional state we experience. Guilt, anxiety and grief leave the caregiver feeling painfully alone. But Samples urges readers to remember they are not alone. In the U.S. alone, there are 65.7 million caregivers. Many of them likely feel unprepared and frightened, as well.
The book is broken down into seven parts: what’s expected of a caregiver; where the problems start; freedom from control; acknowledging what hurts; giving away the pain; breaking free; and finding strength day by day. Samples provides exercises to help facilitate the reader’s engagement with the Steps and features stories to help the reader identify with and learn from others’ caregiving experience. “Self-Care for Caregivers” is a must-read for all caregivers to help keep their emotional state fit, but ultimately it is an asset for those feeling like they are drowning in caregiving responsibilities.
To Remember Love: Two Promises that Led Me to the Notes in the Ashes by Tonya Ferguson
“At that moment, I didn’t know what our future was going to hold. I didn’t know how earth shatteringly difficult the next nine and a half years were actually going to be. I didn’t know what kind of toll it would have on us personally, emotionally, financially or spiritually” (76).
To know Tonya Ferguson’s strength, you must know her story. Fortunately, she has intimately detailed her entire caregiving journey, starting before her father died suddenly of a heart attack, to her mother’s Alzheimer’s diagnosis, and continuing on after her mother’s death from the dreadful disease nine and a half years later. It is a brave and honest narrative that portrays grief, suffering and confusion. Yet Ferguson’s faith-filled words construct a tale that moves beyond the pain of loss and caregiving to a higher plane of hope, love and support.
Every landmark of the “typical” caregiving journey is touched in “To Remember Love.” Feelings of loneliness and despair, struggles with available resources, an extended family in denial, the “perpetual grief” of losing a loved one slowly, periods of readjustment and change. Her story covers all of the bases. Readers will find themselves relating to various aspects of Tonya’s life and healed by her revelations.
Consider “To Remember Love” as a must-read, especially for readers seeking a faith-oriented narrative. Tonya’s grace and ingenuity are truly inspiring. She has made it to the other side and is more than willing to discuss her ideas on what worked as a caregiver and what did not.
“I read where Caregivers should take care of themselves, accept help from friends and family, take time off to get away for a while, commit to staying healthy, stay connected socially with friends, and on and on and on. In a perfect world that would have been great. It didn’t take me long to realize that all of those things would have been extremely helpful and it all sounded very logical when I read it, but I found it impossible to implement those things into my life. … I am here to tell you, with or without those things in your life, you CAN and WILL survive being a Caregiver.” (181)
She also offers advice to a caregiver’s external network in her letter “To All My Dear Friends of a Caregiver.” Tonya explains that a caregiver’s network can help him/her enormously with one uncomplicated action—picking up the phone. “There were many, many days just a simple phone call to let me know I wasn’t alone and that someone was thinking about us would have really meant a lot.” (119)
Caregivers reading Tonya’s story are likely aware of the associated symptoms of caregiving: exhaustion, uncertainty, and stress. But “To Remember Love” promises more than anecdotes of caregiver burnout.
“It’s like I’m watching a beautiful dance. I love the way you all take turns caring for her. It’s such a selfless love and you all need to say no words to each other, it’s like you just know how to do your part.” (160)
The reader, whether caregiver or not, will undoubtedly gain insight into coping with the battle that rages between life and loss. Tonya’s story is primarily one of grace. “No one handed me a ‘How-To Manual’ when my mom was diagnosed with Alzheimer’s. They handed me a prescription for Aricept and told me it might give her six more months.” Despite this, she instinctively handled her caregiving responsibilities with love and compassion. While her role as caregiver no doubt was painful and confusing, Tonya rose to meet the challenge head on with the support of her husband, her two daughters and her faith.
Thank you Tonya for a beautiful and inspiring book, written with honesty and love.
Please visit her site for book news, her blog, and other inspirations: www.tonya-ferguson.com
I’ve just been skimming through “The Caregiving Wife’s Handbook” by Diana B. Denholm and I already like the approach she takes. It’s an inventory process, something I’m a big fan of– I make inventories of clothes, personality traits, books, anything– you name it. It’s a way to get our thoughts in order. As with any stressful circumstance, caregiving necessitates the thought inventory process. Denholm structures her book on the principles of communication: things we say, want to say, shouldn’t say (unless to a friend), and need to say. She helps the reader narrow her thoughts to fit into these four categories through a series of journaling exercises and prompts. But helping facilitate communication between husband and wife is only part of the book. The rest is filled with hard-to-hear-but-I-need-to-hear truths. Like being fed up with people telling caregivers to practice “self-care.” She found that some wives don’t want to practice self-care even though they are told it’s important. Why? Feelings of guilt, cries for help… There are psychological and social reasons for wives sacrificing their health for their husband’s care.
She also mentions “anticipatory grief” as one of the many confusing emotions caregiver wives face. We wrote about living grief, as Denholm puts it, earlier this week. Anticipatory grief not only is common among caregivers but it is also a regular experience for the not-yet-caregiving population, whether we regard it as such or not. It stems from the fear of losing something or someone we care deeply about. Knowing that you will lose someone or something that you love causes the degeneration of our sense of security. It’s important to talk about those feelings because “holding them in isn’t going to help.”
I like that the book gives very practical advice for the caregiver. For the new caregiver, maybe even the seasoned one, advice on things like “emotional fine line issues” is key to direct a caregiving relationship to a healthy place.