A recent survey by the Rosalynn Carter Institute for Caregiving revealed that 83% of caregivers are experiencing an increased level of stress due to the COVID-19 pandemic.
Caregiving right now is more stressful because caregivers must worry constantly about COVID-19 infection. As if your loved one’s condition wasn’t bad enough, knowing that COVID-19 is so easily spread and can be fatal forces caregivers to take extreme precautions to protect their loved ones.
Caregiving right now is more worrisome because the measures to protect us from COVID-19 are simultaneously contributing to loneliness and social isolation. Caregivers already reported feelings of loneliness before the pandemic—but now we’re seeing how societal shutdowns can have ripple effects. Caregivers and care receivers are more isolated than ever before.
Caregiving right now is more challenging because caregivers have to do more caregiving. COVID-19 adds new care-related tasks for caregivers. As an example, you never had to worry about donning personal protective equipment (PPE), but now you have to find it, get it, and ensure that both you and your loved one properly use it—whenever you need it. COVID-19 means less respite care for many caregivers because they’re concerned that outsiders will increase their loved one’s risk of exposure to the virus.
Caregiving right now is more disquieting because of the countless other effects of COVID-19. The global pandemic has ushered in a year of uncertainty, instability, and change. The normalcy we used to know is gone, and nobody really knows when (or if) things will return to the way they were before. The virus has produced dramatic changes at all levels of society—from the personal lives of individuals to relationships among the nations. The unpredictable effects of COVID-19 across the world have elevated our sense of generalized anxiety. If you’re already worried about other things, the uncontrollable ups and downs of caregiving can be even harder to bear.
Here’s to all the caregivers who keep going amid the chaos of COVID-19. Your labor and continued perseverance are reflections of your strength of character and commitment to your loved one. Like you, I want to believe that things will get better. Until they do, I hope you find some degree of comfort in knowing that your efforts are still making a difference for your loved one.
Caring for a parent, spouse, or relative who cannot care for themselves due to age, infirmity, or illness is one of the noblest human activities. It’s also one of the most stressful, posing challenges that can be painful, confusing, frustrating, and deeply rewarding—sometimes all at once. My debut book, When Caregiving Calls, offers practical advice that can help family caregivers do a better job of coping with the physical, psychological, social, and spiritual challenges they face.
In a review of my new book, Kirkus Reviews observed, “The book is smartly organized into 18 brief yet highly relevant chapters, each addressing an aspect of caregiving. At the close of every chapter, questions are included for reflection. Rather than attempt to create a manual, the author shares salient observations about caregiving from a very personal perspective.”
I imagine that most readers choosing a book about caregiving would be looking for a book that’s highly relevant and perhaps personal, but not necessarily one that includes questions for reflection. However, I believe that the questions for reflection are among the most distinguishing aspects of When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative. Why did I include reflective questions after every chapter?
The answer is that I wanted to create a book that could do more than inform caregivers. I wanted to write a book that could potentially transform caregivers.
As you may know, my doctoral degree is in learning, not medicine. I’m interested in helping caregivers learn how to function better within the context of their individual care experiences. In writing this book, I consciously considered how to make it more meaningful and helpful for caregivers, so I decided to incorporate principles of transformative learning theory.
Doctor Jack Mezirow’s theory of transformative learning includes two principal parts: 1) critical reflection, and 2) participation in a dialectical discourse in order to reach a best reflective judgment. The deliberate process of writing answers to the questions in When Caregiving Calls will enable the caregiver who is reading to engage in both parts of transformative learning.
To give you an idea of what I’m talking about, I’d like to share a few insights from Mezirow’s research and invite you to think about how they apply to family caregivers. In a study of women returning to college, Mezirow found that personal transformation often followed:
a disorienting dilemma;
self-examination with feelings of fear, anger, guilt, or shame;
a critical assessment of assumptions;
recognition that one’s discontent and the process of transformation are shared;
exploration of options for new roles, relationships, and action;
planning a course of action;
acquiring knowledge and skills for implementing one’s plans;
provisional trying of new roles;
building competence and self-confidence in new roles and relationships;
a reintegration into one’s life on the basis of conditions dictated by one’s new perspective.[1]
Family caregivers certainly experience disorienting dilemmas as they seek to provide care for a loved one. Those who most successfully transition through their new caregiving roles and realities are, in effect, passing through the steps of transformative learning outlined above.
The questions for reflection in When Caregiving Calls are designed to prompt and facilitate this transformative learning process for family caregivers.
Kirkus Reviews was right—my book is not a manual. Caregiving is extremely personal, and a “manual” that covers everything a particular caregiver would need is impossible to write. I don’t pretend to have all the answers for your uniquely personal caregiving situation. Ultimately, you will discover that you have access to your best answers. Often you just need someone to ask you the right questions.
[1] Mezirow, J. (2009). An Overview on Transformative Learning. In K. Illeris (Ed.), Contemporary Theories of Learning (pp. 90-105). New York, NY: Routledge.
Founded in 1933, Kirkus Reviews is a trusted American book review magazine. You can pre-order When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative on Amazon.com.
An early reader told me that the book feels like an intimate conversation. She compared it to an evening curled up under a blanket, in front of the fireplace, after everyone else has gone to bed. Pulling out the book, she said, you find the reassuring voice of someone who understands your struggles and gives you the reassurance you need to face another day.
That’s exactly the book I wanted to write.
The book is especially for you, the family caregiver. I wrote it for you after more than twenty years of being a caregiver, supporting caregivers, and studying caregiving.
In eighteen easy-to-read chapters, you will explore various dimensions of the caregiving experience through a combination of stories, research, and practical advice.
Each chapter includes questions for reflection that will prompt you to ponder and record your thoughts on how the chapter’s content relates personally to you and/or your loved one.
At the conclusion of the book, you’ll be invited to review your reflections in order to identify next steps—steps that will ultimately help you improve things for your loved one and yourself.
The book is relatable, warm, insightful, and supportive.
It’s also perfectly suited for caregiver support groups. The combination of readings and questions delivers a ready-made format for meaningful group discussions.
My heart and soul have been poured into this book. I offer it to you as a friend. Please let me know what you think after you read it.
BookLife selected When Caregiving Calls as an Editor’s pick and praises the book as an “outstanding guide” and a “lifesaver” for family caregivers. Publishers Weekly also chose the book’s opening sentence to be listed in its “First Lines” update.
BookLife is a website from Publishers Weekly dedicated to raising awareness of independent authors and their works. Publishers Weekly is a prestigious news magazine focused on the book publishing business and regularly features reviews for bestsellers. You can pre-order When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative on Amazon.com.
Over the years, I observed dozens of schedulers filling shifts at my home care company. One of my best schedulers was a woman named Nina who had an uncanny ability to get our caregivers to commit to shifts. Nina was highly effective in staffing because she took extra time to develop relationships with both our clients and our caregivers. Nina was often inconvenienced by caregivers who would call out of shifts or talk about their personal problems with her. Despite the fact that Nina was extremely busy, she always made time for a client or caregiver who needed her. She was unceasingly courteous and kind, and her extra “doses of “honey” (as she called them) came back to her like good karma whenever she was in a pinch and really needed a caregiver’s help.
Not all of my schedulers were as kind to our caregivers. One day I watched in horror as my scheduler slammed the phone down after getting a caregiver call-off. She started ranting about yet another caregiver calling out of a shift. Her colleague responded by asking, “Why do all of them do that?!?”
I knew we had a problem when I heard this exchange. Based on the actions of a few caregivers, my schedulers were generalizing about all caregivers.
The Risk of Negative Narratives in Scheduling
Scheduling can be a stressful and frustrating job because of the challenges filling shifts and handling last-minute call offs, but we know that most caregivers want to do a good job. Of course there are a few exceptions, and you deal with those. But when the narrative in the scheduling department descends into a constant cycle of cynicism and complaining about how caregivers are always causing problems, that perception permeates the office culture.
Your schedulers cannot continue to talk among themselves about how “worthless” caregivers are without allowing such a perception to unintentionally seep into direct dialogue with caregivers. Just like most human beings, caregivers will know if you don’t respect them. Where respect is not given, it is not reciprocated. When there’s a lack of respect between caregivers and schedulers, the challenges in staffing multiply because caregivers and schedulers alike are less likely to be considerate of one another’s needs.
As caregivers and schedulers descend into a tug-o-war, your clients suffer through the ensuing reduction in service quality. Clients will only tolerate so many scheduling mishaps before they start looking elsewhere for service.
Treating Caregivers Like Clients
One of the most distinguishing aspects of home care is that every visit to a client is actually a double-sided transaction. What’s a double-sided transaction? It’s a transaction that requires two “sales” in order to deliver a single service.
In home care, not only do you have to “sell” the service to the client, but you also have to “sell” the visit to the caregiver. It’s easy to see the importance of “selling” to your client, but the necessity of “selling” the visit to your caregiver may not be as obvious. Why can’t you just tell the caregiver when and where to go?
If your team thinks caregivers should simply be told where to go and just do what they’re told, nothing else, it’s critical to realize that such an approach isn’t always realistic in home care. Caregivers are humans with complex lives and many demands outside of work. The variability of available work in home care means that caregivers cannot count on predictable schedules. Work only becomes available when a client has a need, wherever that client may live. Caregivers must adjust their personal lives to accommodate constantly evolving work requests, and sometimes they just can’t do it.
Belittling, scolding, insulting, and complaining about caregivers who can’t work a shift does nothing to fill that hole on the schedule. In fact, being rude is how you drive caregivers away. Home Care Pulse recently reported that the biggest cause of the industry’s high rates of caregiver turnover is poor communication with the office.
You’d never think of being rude to a client. Given the nature of home care’s double-sided transactions, you shouldn’t be rude to a caregiver either.
If you teach your staff to treat your caregivers like clients, you will listen to their needs and make efforts to accommodate them. Caregiver job satisfaction will increase. Turnover will decrease. And your caregivers may be more inclined to respond to your karma in a positive way when you’re desperately seeking to fill that last minute shift.
That’s Nina’s secret: over time, the honey is always more effective than the vinegar.
During his career, Dr. Aaron Blight has held leadership positions as a caregiving provider, policymaker, and researcher. Learn more about his caregiving journey here.
Today a friend told me that this year has been like 1918, 1929, and 1968 all rolled into one.
Marked by a pandemic, economic instability, violence, and demonstrations, 2020 has been a year unlike any I’ve seen in my lifetime.
People everywhere are hurting. It’s as if our entire nation is mourning.
As I contemplate what must be done, I can’t help but consider how caregiving exemplifies the healing that our society obviously needs.
In beholding the care receiver, the caregiver looks beyond scales of social identity to see a human being.
The caregiver meets the care receiver as he or she is. At that intersection of lives, a new type of relationship begins. It is a relationship of caring, giving, and receiving.
Recognizing the human above the circumstances, the caregiver engages in a series of personalized actions that demonstrate understanding, kindness, and genuine concern for the care receiver. Fully exposed, the care receiver welcomes the caregiver, and if possible, manages to find ways to reciprocate kindness. Occasionally, in poetic moments of tenderness, the care receiver can actually become the one who gives care.
As conditions change, the caregiver and care receiver continue to be present for each other. Aware of one another’s obvious imperfections, the caregiver and care receiver develop a mutual acceptance and, at times, admiration for each other. Their relationship is rooted in human vulnerability, compassion, and trust.
The events of this year have amply shown our human vulnerability. As a society, we can commit ourselves to caring, giving, and receiving across divisions of race, gender, politics, age, COVID-19 status, and so on, because we are all human beings. If we extend ourselves in the spirit of caregiving, today’s challenges will lead us to a greater sense of compassion and trust in one another.
My friend and colleague Donna Thomson recently introduced me to Al Etmanski, the author of The Power of Disability: 10 Lessons for Surviving, Thriving, and Changing the World, published earlier this year.
I decided to read this book because my caregiving-related career has allowed me to get to know many people with disabilities on a personal level. I have observed that despite progress over the last 30 years, people with disabilities continue to live in a society where they can be pricked by the senseless barbs of prejudice.
Here’s my “official” review of the book:
“Al Etmanski has authored an inspiring book – a compilation of stories about people with disabilities who have made significant contributions to the world. I enjoyed reading about familiar people, such as Stevie Wonder and Franklin Delano Roosevelt, as well as others who were new to me. Collectively, the people profiled in these pages demonstrate how a challenge can develop character and how limitations can lead to accomplishment. The resulting “lessons” are applicable to every one of us, for they teach us about our shared humanity, regardless of any perceived differences.”
A caregiver’s focus is on supporting a person with limitations, not defining a person by limitations. If you’re a naturally instinctive caregiver, you will appreciate this book.
Al Etmanski is an experienced community organizer, social entrepreneur, and author. Learn more about Al, The Power of Disability, and his other books on his website (https://aletmanski.com/). Additionally, you can purchase this book on Amazon.
The following is from healthcare and human resources professional, Dee Borgoyn…
How can caregivers on the front lines of the healthcare system and in their homes feel together, connected and supported when they may be physically separated and distant from their friends and those they love? What can YOU do to help a caregiver in your life??
This time of COVID-19 is shining a spotlight on caregivers across the globe. Healthcare workers have been mobilized worldwide and are being stretched to their limits physically and emotionally giving care to those battling the deadly virus. The crisis is impacting every type of caregiver — from acute care hospitals to home health workers, from senior living communities to those caring for family members at home. It’s hard to describe the depth of the emotions and stress that people are experiencing, especially when we’re required to socially distance ourselves for weeks on end.
Here is some advice I’ve been given by caring nurses and friends much wiser and more experienced than me, when I’ve faced feelings of loneliness, helplessness and exhaustion in tough times …
Most importantly TAKE CARE OF YOURSELF.Step away from the fear and news as much as possible. Do one small thing for yourself, regularly. Start or keep a journal, get your feelings out on anything you can find to write on. Turn off all noise and sit with the quiet. Let yourself cry; let yourself laugh. Get some sunshine. Listen to some uplifting music. Take a walk around the house or the hospital even if you think you absolutely can’t. Try not to think about things you can’t do and think instead about what you can. Don’t think “if”, consider “how”. Know that you CAN do this.
REACH OUT TO CONNECT WITH OTHERS.Choose the phone over social media whenever possible. Set a TV date and watch a show “together”, or even try to play a board game, in separate places (no cheating!). Write and mail cards and letters to friends and families. When you’re out of the house for necessities, driving or shopping for example, share a smile and a wave with the people you see. If you are at work, look out for each other, think outside the box, put aside any differences you may have had. Give and receive compassion within your teams. When you see a need give your co-worker a break — even if it’s just long enough to take a deep breath, or your shoulder for a short cry.
ASK FOR HELP. I know this can be very hard for caregivers, but if there ever was a time to ask this is it. Many people around you want to help, they just don’t know what to do. So, at home, set some boundaries so that you can have some alone, quiet time — and make sure you get it! Take a short nap or take a long bath or shower. Put a family member in charge of taking care of you. Have a family member or friend do your shopping or run important errands. Ask your partner to rub your shoulders. Ask if you can vent. Whatever is it you need — ASK. And if someone offers help — TAKE IT.
We will get through the current crisis — it will pass.
Caregivers will always be crucial and will always need our support and understanding. If you are a caregiver, or know one, please take these suggestions to heart.
We need each other now and always.
Dee Borgoyn is a career healthcare and human resources professional who has left the corporate and not-for-profit worlds to focus exclusively on developing the type of leadership that nurtures and supports caring, inclusive work cultures. She was disabled from birth and is passionate about providing a voice for those who otherwise may not have one, and ensuring fairness and equity for all people. Learn more about Dee and her services on her website (https://deeborgoyn.com/).
Do you have an elder in your life that you sometimes worry about? If you do, then you know how difficult it can be supporting them in accepting elder care, coordinating it, and overseeing the care. Do you know that Care Managers help with all of this? Aging Life Care Managers are trained professionals who are governed by an association called The Aging Life Care Association, serving the United States and Canada. Our staff at We Care Management, LLC are Advanced Professionals in this association because we have the highest credentials for our field, showing we are experts.
As people age, they often acquire difficulties with their health and daily functioning and therefore have more stress and more things to “manage”. It can become a full-time job taking care of one’s life as they navigate through the aging process, whether it is the individual themselves managing everything or a family member or friend. We often see these circumstances lead to increased frustration, worry, sadness, and a loss of the ability to have enough time to take part in enjoyable activities. Because there are multiple health issues to deal with and therefore many appointments, in addition to all of the other daily life tasks, people can become overwhelmed and sometimes forget appointments or plan for them on the wrong day.
If you or someone you know is experiencing something similar to this, we encourage you to ask for help in managing some of this, so you and your loved ones can still have time and energy for enjoyable activities in your day to day lives! Some Aging Life Care Managers provide licensed counseling services and help individuals find ways of relieving your emotional distress and overall stress! For adult children who live far away from their parents, they can even provide Teletherapy counseling via a secure video chat.
If you have any questions about Care Management as a resource, reach out to We Care Management, LLC to allow us the honor of supporting you in helping the elder in your life! If you don’t live in Northern Virginia we can point you in the right direction!
When care meets love, everything changes. Once you become a caregiver, your existing relationship with your loved one is both the same and different. Your relationship with your friends and family is both the same and different. And nearly everything you once took for granted—the parts of your life that made so much sense—may suddenly feel strange and unfamiliar, overwhelming and disorienting.
My own life experiences as a caregiver, my role as a professor of communication, and my academic research on caregiving across the life spectrum tell me that caregiving is not only about what you do with your loved one, but also how you begin making sense of what is happening to you and your loved one, and how you seek to share your care experiences with others.
Too often, we feel compelled to put on caregiver masks to “protect” our loved ones and save our precious emotional energy from others’ well intentioned but often disappointing responses. Over time, we may find ourselves simply giving people what we think they want to hear, creating feelings of aloneness and resentment.
Unless we give ourselves permission to meaningfully examine how our caregiver role and relationship impacts our beliefs, values, and ways of connecting with others, we will remain voiceless, adrift in other people’s clichés and assumptions. Too often, caregivers miss out on the opportunity to collaboratively engage others in the midst of their care experiences.
I am proud to be a part of the Caregiver Transformation Retreat because caregiving requires that we reorient ourselves to what is happening so we can begin reclaiming the meaning(s) of our care experiences in ways that work for us.
Together, at the Retreat, we will learn communication skills and strategies designed to help you communicate more effectively and authentically with audiences that matter to you.
Together, we will discuss new ways of of thinking about and sharing your experiences that more closely align with your lived experiences, care constraints, and emerging values and insights.
Together, we will practice how to explain difficult truths to family, friends, work colleagues, and providers.
Together, we will explore the value of sharing “good” news so that the full range of your everyday care experiences are identified, remembered, and valued, increasing the likelihood of ongoing caregiver self-compassion and resilience.
Together, we will enhance your connection literacy to help you better identify and receive the kinds of in-person and online support that are most useful and valuable to you throughout your care journey.
Whomever we are and wherever we are in our care journeys, we can only find ourselves when we hear ourselves, out loud, begin to integrate and communicate the parts of our care experiences that make us—us. It’s never too early or too late to begin this process . . .
Dr. Zachary White earned his Ph.D. in communication from Purdue University. He is an Associate Professor in the James L. Knight School of Communication at Queens University of Charlotte. His research and teaching explore a range of care experiences, including birth (parental NICU experiences), chronic caregiver experiences (spousal caregiving), and end-of-life caregiving. As an award-winning university professor, Zachary teaches a variety of undergraduate and graduate courses addressing topics such as provider-patient communication, caregiver communication, the patient experience, health and illness narratives, digital health literacy, online social support, and sense making amidst life transitions. He is the co-author (with Donna Thomson) of The Unexpected Journey of Caring: TheTransformation from Loved One to Caregiver (Rowman & Littlefield, 2019). He blogs at The Unprepared Caregiver (www.unpreparedcaregiver.com).
All of us have been transformed by caregiving. Now we have an opportunity to go deeper, to share our hard-earned wisdom and to map out a new way of practical caring without desperation or burnout. And the best way to achieve this new perspective is face to face, together with others who understand – in The Caregiver Transformation Retreat.
My life of caregiving began in 1988 when our son Nicholas was born with severe cerebral palsy. During the first years of his life, Nick was often ill and in pain. They were sleepless years, infused with desperate worry. Of course, all this happened before the internet became a lifeline for caregiver support. What we did have though, were parent retreats, sponsored by our local Easter Seal Society.
Those parent retreats were my annual opportunity to learn about new therapies, strategize about the sibling experience and compare notes about ways and means of keeping my marriage intact. But perhaps the best thing about the retreats was the bonding with other parents. Here suddenly, were others who understood. And there were older, wiser parents who took on a natural mentoring role. There was a palpable sense of safety and soothing in those retreats. We all felt it.
Fast forward to 2016. My sister Karen and I found ourselves in the thick of caring for our mom, a loving but willful 94 year old with dementia. Mom was in denial about her needs and living independently with insufficient support. “Muddling through” was a good descriptor for how we were doing. When we could, my sister and I retreated to our family cabin by the lake. On forest walks, we wondered what might happen if Mom broke one more rule. We laughed at the outrageous imaginings of telling Mom what we really thought about her bad behavior. At the end of the weekend, we went back to being good daughters, diffusing crises and brokering deals to ensure Mom’s stability for another week or month.
Looking back on the caregiving retreats in my life, I feel deeply grateful. I appreciate the cyber friendships of other caregivers, but the face-to-face retreats have been something very special to me. They were energizing, hopeful, knowledge-filled and inspiring. In short, they were transformational.
Now, together with Aaron Blight, Zachary White and Amanda LaRose, I am honored and excited to be a co-creator of the new Caregiver Transformation Retreat. Our team has come together with a clear vision of what is helpful to caregivers, wherever they are in their journey of caring. Our retreat is tailored to every group we serve, whether participants are medical professionals or family caregivers. Resilience, personal transformation and a changed perspective on the well of human kindness are the by-products of our retreats. Participants will leave energized, with a new sense of purpose and fulfillment in their caring roles – outcomes only achievable in the magical moments of face to face retreats.
In case you haven’t heard, there’s a new resource from @demmapgrd — a guide to the resources needed by those diagnosed with a form of #dementia, #family members, and professionals providing #care or services. Much needed!
dementiamap.com
The following is from healthcare and human resources professional, Dee Borgoyn…
Fast forward to 2016. My sister Karen and I found ourselves in the thick of caring for our mom, a loving but willful 94 year old with dementia. Mom was in denial about her needs and living independently with insufficient support. “Muddling through” was a good descriptor for how we were doing. When we could, my sister and I retreated to our family cabin by the lake. On forest walks, we wondered what might happen if Mom broke one more rule. We laughed at the outrageous imaginings of telling Mom what we really thought about her bad behavior. At the end of the weekend, we went back to being good daughters, diffusing crises and brokering deals to ensure Mom’s stability for another week or month.
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