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.
Caregiving consultant and healthcare speaker Dr. Aaron Blight often takes the time to answer questions on Quora about caregiving organizational development, senior care, healthcare consulting, and many other topics. In this latest post, he answers the question:
When is the Last Time You Really Felt Connected to Your Job?
Dr. Blight: I’d have to say it was last week, when I had the privilege of going to the United Nations Palace in Geneva, Switzerland, to speak on and advocate for caregivers across the globe.
I feel connected to my job because in reality, it’s no longer a job. It’s a calling.
In the past, I’ve certainly worked in positions that were nothing more than jobs, but the trajectory of my life led me here.
You see, it was about 20 years ago when my mother-in-law got a brain tumor at a relatively young age…
…and we became her family caregivers. Despite holding one of those “jobs” in national healthcare policy, I didn’t know much about cancer, aging, or caregiving. That completely changed with my mother-in-law’s diagnosis.
I later started a home care company to help families like mine who were caring for aging and sick loved ones…
…and I got a doctoral degree that enabled me to study caregiving as a phenomenon of social science.
I came to discover how challenging, vitally important, and ubiquitous caregiving is. Paradoxically, the understanding of caregiving is limited, and the needs of caregivers are often overlooked.
So I’ve adopted the cause of caregiving, or perhaps the cause of caregiving has adopted me.
I feel connected to my job because I know that caregivers all over the world can use a little help.
Caregiving consultant and healthcare keynote speaker Dr. Aaron Blight often takes time to post topics and answer questions on Quora about senior care, caregiving organizational development, healthcare consulting, and many other topics. For December’s entry, we highlight his recent answer to a question regarding gerontology.
“Is gerontology a growing career field?”
Not to be confused with geriatrics, the medical specialty, gerontology involves the study of the physical, mental, and social aspects of human aging. In response to your question, I would highlight some of the trends in our society:
people are living longer lives than ever before in the history of the world;
people are living with chronic conditions longer than ever before in the history of the world;
the fastest growing segment of the population is the 85+ age group;
this year, for the first time ever in human history, there are more people over age 65 than under age 5;
the number of people over age 65 will dramatically increase over the rest of the century, while the number of children under age 5 will remain fairly constant;
there’s a shortage of professionals who are prepared to deal with the social, behavioral, physical, and economic implications of our aging population.
Here’s a chart showing the forecasted future of the global population of 65+ year old people compared to the global population of children under age 5:
In light of the above conditions, is gerontology a growing career field? You better believe it is. Moreover, as you might anticipate by looking at the chart derived from United Nations forecasting, the need for gerontologists is only going to increase in the foreseeable future.
The growing demand for gerontologists alone is a compelling reason to choose this career path. But here are three additional reasons why the field is super interesting:
First is the universality of gerontology.
Aging happens to every single one of us, so you study stuff that everybody can relate to. Stuff that really matters. By examining the wide-ranging dimensions of aging, gerontology encompasses the very essence of human life.
Second is the interdisciplinary nature of gerontology.
Gerontology draws from all disciplines that have something to teach us about aging humans, including biology, medicine, sociology, psychology, public health, anthropology, etc. Gerontologists are not limited to the “tools” or the ”lens” of one particular discipline, which produces a rich and multi-faceted view of the subject.
Third is the array of career paths chosen by those who study gerontology.
Trained gerontologists are found across a diverse spectrum of work settings, including government, academia, business, non-profit, healthcare, and long-term care organizations. If you’re thinking about pursuing a career in gerontology, you may find that your knowledge is translatable, relevant, and valuable to many different groups who need help serving an aging population.
Employees who are family caregivers find themselves asking this question: which comes first, my job or my family?
The Dilemma
“Checklist care” is faster and easier to provide because it focuses on the physical needs of the care receiver.
Caregiving has the potential to tip the scales of balance that conscientious people strive to achieve in doing good, both at work and at home. Family caregivers go about their daily lives knowing that at any particular moment, they may have to drop what they are doing to attend to the needs of their loved one.
Your family is important. Your job is important. Family and work should not be mutually exclusive, but sometimes, for caregivers, they are. Or at least it seems like they are.
The Family Caregiving Alliance (FCA) has gathered some statistics about caregivers who work. Here are a few of the highlights from the linked page:
70% of working caregivers suffer work-related difficulties due to their dual roles.
Many caregivers feel they have no choice about taking on caregiving responsibilities (49%). This sense of obligation is even higher in caregivers that provide 21 or more hours of care per week (59%) and live-in caregivers (64%).
60% of caregivers in 2015 were employed at one point while also caregiving.
Only 56% of caregivers report that their work supervisor is aware of their caregiving responsibilities.
Employees bring their “whole selves” to work. As much as an employer might want to tell an employee to keep personal problems at home, it’s never quite that easy, especially for family caregivers. While at work, family caregivers may become distracted or preoccupied with their loved one’s needs; they may show signs of depression or moodiness; or their actual work performance may be affected. In turn, employers are confronted with lost productivity and potential performance management issues.
The Path Ahead
Employers need to understand these caregiving challenges. It has become a business necessity. Our aging population signals that there will be an ever-increasing number of employed family caregivers for the foreseeable future.
Employers need to do better helping employees who are serving as family caregivers. According to the FCA, approximately one-quarter or less of the caregivers surveyed stated that they have access to employer-sponsored support (e.g. support group discussions, ask-a-nurse type services, financial or legal consultation, and assisted living counselors).
What can employers do? They can take steps to ensure that work and family caregiving are not mutually exclusive ideals. Here are some suggestions:
create policies that permit accommodations for employees who are family caregivers, such as flextime and flexplace.
make counseling services available to employees who juggle family caregiving responsibilities.
start a caregiver support group for employees.
establish pathways to professional services that meet the needs of employed caregivers, including home care, assisted living, legal and financial help, and/or geriatric medicine.
facilitate training opportunities for employees to develop their capacity to care for aging and disabled loved ones.
educate managers on caregiver discrimination (strong word, I know) so that employees are not presumed to be less committed to work simply because they care for a loved one in need at home.
We hear lots of discussion about equal employment opportunity and fostering supportive workplace environments for people of all races, genders, and ethnic backgrounds. Family caregivers come from all backgrounds, but in the dialogue about supportive workplaces, the needs of this growing segment of the workforce are often overlooked. It’s time for bosses, employers, and governments to take a hard look at the plight of the employed family caregiver.
Because the very word, care-giver, combines two words that independently imply compassion.
“Caregiver” is a hybrid of the verb “to give” and the noun “care” or the verb “to care.” The title carries an equal connotation of action and emotion, suggesting not only what a caregiver does but also who a caregiver is.
Caregiving is comprised of active services and support given to persons who, due to age, infirmity, or illness, cannot take care of themselves and rely upon someone else for assistance with personal or emotional needs.
“Care” implies attention to the welfare of another person that is motivated by feelings of genuine concern for the other.
Caregivers are usually motivated by such compassion, but admittedly that is not always the case.
Is Caregiving Always about Compassion?
Studies have shown that there is a paradox to “care.” Here are a few of the cited paradoxes of caregiving:
A caregiver faces existential challenges while regulating feelings during the performance of emotional labor.
When money is introduced into a caregiving exchange, altruistic motivations to care may become compromised.
It has been suggested that women’s gendered pre-disposition to care perpetuates the exploitation of women.
These paradoxical dimensions of the caring aspect of a caregiver’s role may be manifested in a wide range of situations, such as:
A caregiver hides disgust when cleaning up urine and feces.
The guilt, anger, or resentment a family caregiver feels is suppressed beneath the daily demands of caregiving.
A caregiver is expected to do something “extra” that involves significant self-sacrifice.
“Care” is used as an emotional appeal to induce the caregiver to operate outside the expected boundaries of the role.
Under the auspices of “care,” a caregiver exploits or abuses a care receiver.
Thus, it would be a nice but faulty assumption to assume that every caregiver is compassionate or that every act of caregiving is motivated by compassion.
Having said that, in my mind there is no question that caregiving is among the noblest of human endeavors. The compassion of many caregivers I know is demonstrated through daily sacrifices of time and energy, complete focus on the wellbeing of another, and obvious gestures of love.
Select References:
Bolton, S. C. (2001). Changing faces: nurses as emotional jugglers. Sociology of Health & Illness, 23(1), 85-100. doi: 10.1111/1467-9566.00242
Folbre, N., & Nelson, J. A. (2000). For love or money – Or both? Journal of Economic Perspectives, 14(4), 123-140. doi: 10.1257/jep.14.4.123
Husso, M., & Hirvonen, H. (2012). Gendered Agency and Emotions in the Field of Care Work. Gender Work and Organization, 19(1), 29-51. doi: 10.1111/j.1468-0432.2011.00565.x
Schofield, H., Murphy, B., Herrman, H., Bloch, S. and Singh, B. (1997). Family caregiving: Measurement of emotional well-being and various aspects of the caregiving role. Psychological Medicine, 27, 647-657.
Stacey, C. L. (2011). The caring self: the work experiences of home care aides. Ithaca, NY; Cornell University Press.
Do you have #friends who knew you when...?
A "blast from the past" contacted me this week, shared a letter I wrote years ago (he still had it), and made me think about life "back then."
Old friends are best friends. They remind us who we were and sometimes reveal who we are.
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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