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Review of The Power of Disability: 10 Lessons for Surviving, Thriving, and Changing the World by Al Etmanski

The Power of Disability Book

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.

 

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“Care for Everyone” is More than Masks and Social Distancing

Benches lined up in a row

If there’s one thing that COVID-19 has taught us, it’s that we should be looking out for others. That means taking care of one another, even if the other person is a complete stranger.

Right now we’ve been asked to “care for everyone” by practicing social distancing and wearing masks in public.

But I think that taking care of everyone implies much more than that. It means adopting a culture of kindness. It means stopping for a moment to help when you see someone in need. It means habitually thinking about the welfare of others.

I’m concerned that some of the current COVID-19 measures – the ubiquitous warnings about mask-wearing, social distancing, etc. – may actually have an antithetical effect on us.

You need only go to the grocery store to see this. In some ways, the current climate is telling us that the person you don’t know who’s standing in the aisle close to you is to be avoided at all costs. If you didn’t think that yourself, the recorded store-wide announcement will repetitively tell you so.

Speaking of the grocery store, in my limited public outings I’ve noticed something that’s got me thinking. Perhaps it has struck a chord with you too.

Have you noticed that a mask covers a smile?

What happens to a society when a smile – the most universal sign of human happiness, warmth, and connection – must be covered up?

Obviously, public health advisories are important and should be heeded.

However, I’m looking forward to the day that we can drop the masks, shake hands, and actually care for one another without worrying about how much space is between us.

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Staying Emotionally Together When You’re Physically Separated

business woman on the phoneThe 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/).

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How Care Managers Impact the Caregiving Industry

retreat for caregivers
(Learn more about the retreat by clicking the above image!)

The following is from Caregiver Transformation Retreat co-creator, Amanda LaRose…

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!

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Caregiving Kinetics Blog Named Among Top 50

Award badge

Caregiving Kinetics’ blog was recently named to Feedspot’s Top 50 Blogs in the Caregiving category. This blog was chosen by Feedspot’s editorial team out of countless other submissions based on metrics such as blog quality, posting consistency, social popularity, and Google search rankings.

Written by caregiving consultant, healthcare keynote speaker, and company founder Dr. Aaron Blight, the blog features posts drawn from personal experience, interactions with patients and families, academic research, industry trends, and deeply held beliefs, including the importance of giving and receiving care– not only for others but for caregivers themselves.

“It wasn’t until my wife Jessica and I began caring for her relatively young mother who had been diagnosed with a brain tumor that I truly began to understand the scope and significance of caregiving on a personal level,” says Aaron.

Although Aaron had previously been writing national healthcare policy for the elderly, his experience as a caregiver changed the direction of his career entirely. He opened a home care company to help seniors and their families who were facing similar aging-related challenges. Although he started his home care company with a desire to focus on senior care and their loved ones, interactions with employees led Aaron to care equally about his staff. Aaron’s research, developed in connection with his doctoral degree, offers insight into how caregivers experience and embrace their roles.

In his award-winning blog, Dr. Aaron Blight draws on a combination of personal experience and industry knowledge to create content that supports and resonates with all those caring for a loved one, and those working to create a culture of caregiving based on more than “fed, meds, and bed.”

Caregiving Kinetics delivers consulting and customized caregiving presentations to large and small groups in the Washington, DC area, throughout the United States, and abroad.

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Jennifer Gullison Receives the Caregiving Kinetics Hand & Heart Award

Congratulations to Jennifer Gullison RN, MSN, COS-C, Chronic Care-S of Cornerstone VNA for receiving the Caregiving Kinetics Hand and Heart Award today at the Northeast Home Health Leadership Summit!

In nominating Jennifer for the surprise recognition, CEO Julie Reynolds said, “Jen Gullison came to Cornerstone VNA right out of nursing school, has been with us for 18 years and has been a force of professional growth now holding the position of Chief Clinical Officer. She has a passion for the work we do and she brings it with her every day along with her positive attitude. She always remembers the importance of the patient, their family/caregivers, and the clinicians when making decisions. She is an amazing positive influence on staff, encouraging and coaching them to be their best and providing opportunities for them to be successful through support and education. Jen embraces all this change we have gone through and are now going through with excitement and creativity-always with the mission in mind.”

Thank you, Jennifer, for serving not only with your hands but also with your heart as you lead clinical services at Cornerstone VNA.

caregiving professionals

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The Challenges & Benefits of Explaining Yourself & Your Care Situation(s) to Family, Friends, & Health Professionals

retreat for caregiving professionals
(Learn more about the retreat by clicking the above image!)

The following is from Caregiver Transformation Retreat co-creator and award-winning professor, Zachary White…

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: The Transformation from Loved One to Caregiver (Rowman & Littlefield, 2019). He blogs at The Unprepared Caregiver (www.unpreparedcaregiver.com).

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Caregiving Kinetics Announces The First Caregiver Transformation Retreat

retreat for caregivers
(Learn more about the retreat by clicking the above image!)

The following is from Caregiver Transformation Retreat co-creator, Donna Thomson…

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.

holding mom's handFast 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.

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“When the wood-insect gathers sticks on its own head, it carries them.”

Have you ever attended a conference that was unlike any other?

A conference that broadened your understanding in ways you never imagined?

A conference that so deeply affected you that you’re going to be a better person because you were there?

AEMRN conferenceThe recent Afro-European Medical Research Network (AEMRN) Conference was such an event for me.

I traveled to the United Nations Palace in Geneva, Switzerland, to deliver a speech about caregiving at AEMRN’s annual meeting. Whatever I may have contributed to the agenda, it was returned tenfold to me.

I met incredible professionals who are working diligently to promote health-related causes in Africa. I wrote a close-up about one of them here. Everyone I met at AEMRN is devoting their time and their resources to benefit those who struggle under conditions of poverty in Africa.

I learned so much from the other conference participants about the African continent, culture, and challenges. I also learned about what it means to care.

I was uplifted by my many personal conversations with people of wisdom, resilience, and authenticity. I honestly felt as if I had joined a tribe. Dr. Christian Sesay told me that the warmth extended to me was not unusual. “When you go to Africa, they roll out the red carpet for you,” he said.

Dr. Sesay proceeded to share a couple of African proverbs, which I’m still contemplating, days later. One of those proverbs is the title of this post. He offered the proverbs to me as a gift, not a material gift but a spiritual gift, a proverbial application of insight into my own life circumstances. I believe I will carry his gift with me forever.

When humans genuinely care for one another, connections are made that can penetrate perceived social barriers such as race, nationality, and even language. Caring is quite possibly the most universal of all languages.aaron on AEMRN panel

 

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When is the Last Time You Really Felt Connected to Your Job?

 

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.

dr. blight at un building

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.

caregiving speaker

I feel connected to my job because I know that caregivers all over the world can use a little help.