Caregiving, Empathy, and Storytelling

Whether I am caregiving for my mother, working as a professional writer and consultant, or as a New Pulp author, one of the statements I frequently hear is some variation of “storytelling is an engine of empathy”. Regardless of my roles as caregiver/ marketing professional/or writer, I find myself dismayed that storytelling (especially digital storytelling) often gets misused as a buzzword. In the spirit of National Family Caregiver Month, I thought I would write about caregiving and storytelling.

Stories matter, both in how we identify with ourselves and each other. As caregivers, we deal with a wide variety of tragedies and triumphs while (hopefully) managing some semblance of stability. Every opportunity to share our experiences with other caregivers to find connection and understanding. However, like many organizations who have adopted “storytelling” as a buzzword, there is one key concept that often gets misunderstood:

Effective storytelling comes from a place of authenticity as well as empathy.

It is easy to use storytelling as a way to foster an ideal image, to suggest that we want to hit “key messages” with the listener or reader. Hiding behind a facade of “everything’s all right” can be easy for someone caregiving for a family member or loved one. Yet there’s something seemingly “off” when someone shares from that facade. Not sharing every negative or painful aspect of experience out of a sense of propriety is one thing; engaging in “happy talk” or expressing caregiver issues through a rose-colored view is another. As human beings, we sense when something is inauthentic, choosing to “tune out” and dismiss the narrative. We know something’s “off” and we find ourselves emotionally distancing from the storyteller. (Or worse, offering inappropriate advice and feedback to a caregiver)

Storytelling from a more authentic place allows the listener/reader to feel greater connections. One of the reasons many caregivers (including myself) avoid sharing our total stories is that reactions can often be unnecessarily dismissive. Despite the number of caregivers increasing in our country, there is still some sense of shame and feeling that something has been “lost.” For many caregivers, finding some room for adequate self-care can be difficult when dealing with extreme situations. Those stories, however, need to be heard. They’re not necessarily pleasant or optimistic, but can be a lifeline for those who need it. Sharing from that space is difficult, but can mean the world when someone feels truly heard as a result.

One example: pre-COVID, I had attended one of AARP Illinois’ caregiver gatherings. Like many other gatherings, there were people new to caregiving and confused about where to start. It was like many other AARP caregiver gatherings: small group conversation followed by sharing and open questions. During the open discussion and sharing, many caregivers discussed how they considered self-care as “pampering”. At one point, a caregiver disclosed that she never had any issues because “she turned her troubles over to God.”

Ironically, no one had bothered to offer the newcomers any advice…until it became my turn to speak. I had limited time (the woman with no caregiving issues dominated a large amount of time), but I simply spoke from the heart. This isn’t an exact transcript, but comes close to it:

“When I started caregiving for Mom, it wasn’t easy. Luckily, we worked with the social worker at her hospital to help her get a home care aide and supportive services. One of the things that helped us was contacting the Departmentsof Aging for Chicago as well as Illinois. But caregiving isn’t easy and can be overwhelming, and nobody expects us to get it perfectly. There’s going to be a lot thrown at you, but the only way to handle it is one at a time. For caregivers, self-care is a strategy and not an indulgence, and taking care of yourself is vital. I’ve learned to find comfort in my friends, but there are other resources like counseling and community groups. It’s not easy, but you will make it.”

Unfortunately, I never made it back to another session before COVID hit. But it was a good reminder for me about the power of storytelling. Professionally, I sometimes have to advise against focusing on selling a positive image to drive that mysterious quality called “engagement”. (Simply put, I avoid selling the sizzle at the expense of the steak). But the only way I have found to do that is through authenticity: seeing oneself for who one actually is and not some internal ideal. For caregivers, this is a challenge given the overwhelming nature of caregiving. It can be done, and sometimes, the reminder is very welcome.

Please comment below with your thoughts, or join the conversation on our Facebook group. If you want to reach out privately, please use this email contact form.

And as always, thanks for reading!

Advertisement

Caregiving, COVID, and Defining the “New Normal”

Being a caregiver means having a sense of flexibility and improvisation to balancing caregiving duties, work, and self-care. Dealing with COVID-19 in the past year has been especially challenging with everyday activities being reinvented and reconsidered. As Illinois and Chicago transition with more people vaccinated (including myself), our challenge is to determine the shape of the “new normal.” Here are some suggested principles that can not only benefit caregivers but provide support for the greater community as well.

Our primary guiding principle: Other People Matter – Throughout the pandemic, there have been incidents involving people harassing mask wearers, businesses defying state orders, and even racially motivated attacks in light of the pandemic. Empathy, like compassion, is no ordinary word. After a year and a half of relative isolation and changing social dynamics, perhaps choosing to understand rather than be understood is a more realistic approach to adjusting to post-pandemic life. As our culture shifts towards caregiving across a broader population, perhaps learning to speak to caregivers empathically can be a good start towards approaching others with respect, consideration, and dignity.

Remote Work Should Always Be an Option – Regardless of what some CEOs might proclaim, remote workers are at low risk of “losing their hustle”. In fact, more companies are adopting remote work policies because they can be more effective and productive. As a remote worker myself, I find that I can more easily balance professional and personal matters. For companies who may be reluctant to adopt remote work policies, there are resources like Cultivate Now that provide consultation and insight. (FULL DISCLOSURE: I was a contract worker for Cultivate Now years ago). Managing remote teams can be challenging, but reducing the need for transportation, specific office space, and promoting worker autonomy allows for greater productivity and effectiveness for both caregivers and other employees.

And speaking of “losing the hustle”…

Photo by Gordon Dymowski

Let’s Lose the “Hustle/Crushing It” Mentality – Many individuals often promote the idea of always being “in the hustle” when it comes to generating business, promoting their career, or even in life. Another well-worn cliche is the idea of “crushing it” or focusing solely on the number of accomplishments in a given day. Post-pandemic, it may be wise to consider that both “hustling” and “crushing it” are myths that need to lose their prominence. After all, it is easy for professional “hustling” to devolve into hiding, choosing to focus on the immediate to avoid introspection. Besides, caregivers are masters of the “hustle” in that they negotiate several complex networks of service providers (including health care, elder care, and social services) in order to accomplish major goals. Staying humble yet focused yields much greater rewards.

Let’s rethink how we approach family leave and other self-care resources – Although there are federal efforts to expand family leave, this should not be the only solution for caregivers and other individuals. Male caregivers, especially, are more prone to deny the emotional consequences of caregiving yet experience higher levels of depression. Taking on the stress of caregiving along with other tasks (including self-care) can be daunting and draining for many individuals. Easing access to mental health and support services (including virtual and offline support groups) can provide some comfort to caregivers at greater risk of isolation. After a year of dealing with pandemic-related issues along with caregiving matters, facilitating the use of community-based resources can assist with moving forward into a healthier future.

Let’s be honest: moving back to a old sense of “normal” is neither practical nor realistic. Our culture and everyday rituals have living were disrupted by COVID-19, and moving back towards “good enough” should not be an option. We have a great opportunity to integrate compassion and empathy into our culture after a very prolonged period of disruption and unrest. We have experienced how antisocial, disruptive, and misinformed forces have actively shredded the social fabric. Now, it’s time to begin reweaving that fabric for our community, because we’re all caregivers to each other.

Questions? Comments? Leave them in the space below. Please join the conversation on our Facebook page, or email us directly.

And as always, thanks for reading!

Some Public Domain Holiday Viewing for Caregivers

(Updated on 11/13/2021)

Although we’ve covered technology, social change, and other great initiatives in the Chicago community, we’ve also focused on caregivers and caregiving…and we thought this year, we would provide a slight change of pace for the holiday.

One of the highlights of 2019 was the entry of works into the public domain, allowing people to view, reuse, and adapt these works freely. So in that spirit, we’re offering some great videos for caregivers (and others!) to enjoy this holiday season, including the Harold Lloyd classic Safety Last from 1923.

Happy holidays and enjoy!