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!

COVID-19, Caregiving and Compassion

As my mother’s caregiver, I have learned how to handle various aspects of life including job seeking, freelancing, self-care, and creativity. In the midst of the current coronavirus/COVID-19 pandemic, I find myself reflecting on the lessons I am learning about self-discipline in isolation and self-care and how these impact my caregiving effort.

One of the greatest ironies that I perceive is that my own tendency to self-isolate and keep my distance has served me well when it comes to my social distancing efforts. Dealing with an immunocompromised mother (due to a liver transplant and anti-rejection mediations) has increased my awareness and sensitivity around preventing potential complications. My own efforts towards self-care had increased before the pandemic with an increased motivation to care for my physical and mental health. (Like many other male caregivers, I can drift into depressive episodes if I am not careful). My social activities have increased slightly, but are still erratic: given their professional and personal responsibilities, touching base with others can be challenging but I am experiencing an increase in connection).

Photo by Gordon Dymowski

However, this “leveling of the playing field” has also lessened the obvious stress and strain on my caregiving efforts. Recently, I had to run two short (but critical) errands on a quarter-mile stretch of a major street. Except for the occasional dog walker, the street was devoid of cars and pedestrians. Walking down that stretch on a Friday afternoon had an eerie, silent quality which had a calming effect on me. Both venues that I visited had a moderate number of patrons, many of whom were rushed to acquire what they needed and get home. Having time to spend on personal and creative efforts has helped alleviate the perpetual fear of missing out that comes to me regularly as a caregiver.

One of the most powerful effects of being a caregiver during the COVID-19 pandemic is that I have a greater sense of empathy and compassion towards others. It is not just an effort to pay the kindnesses shown me forward, but to actively and assertively express that compassion. Self-isolation and social distancing may presently be the most compassionate acts towards others, but being able to show (and receive) smaller kindnesses can be rewarding. It’s never easy; last week was especially challenging since I served as an election judge for the 2016 primary; had several events cancel at the last minute, and an effort to run an online screening did not go rather well. Despite my desire to last out in anger, keeping my cool and remaining calm comes more easily from a compassionate approach.

Photo by Gordon Dymowski

Compassion as a caregiver can be challenging, especially when dealing with negative or obnoxious behavior. On the lighter end, many people do not know how to speak to a caregiver so dealing with those lapses in judgment can be annoying. But on the other end, with many people taking advantage of the COVID-19 pandemic by hoarding hand sanitizer or buying out supplies from a Dollar Tree can be especially infuriating. (Especially since many caregivers deal with relatives who may have intestinal or digestive problems). However, compassion in challenging times comes from the smaller kindnesses of friends. Unexpected gifts both physical and emotional, ranging from an unexpected video chat to a surprise coffee mug, provide plenty of fuel for being compassionate as a caregiver.

We are living in uncertain, disquieting, and anxiety-provoking times. This is not a feel-good solution, and should not be read as a dismissal of those facing especially challenging times. One of the greatest lessons that I continue to learn as a caregiver is that compassion may not always be easy, but it is extremely necessary. 

I would enjoy hearing from others and getting their perspectives: please leave your comments below or join the conversation on our Facebook page. If you wish to comment privately, use this email contact form.

As always, thanks for reading and stay safe!

Caregivers & Health Care: A Complicated Relationship

As a caregiver for my mother, I frequently interact with our health care system. Having received a liver transplant ten years ago via Medicaid and Medicare, my mother has also experienced other health consequences including kidney disease, type 2 diabetes, and chronic heart disease. Last Friday, my mother went in for an angiogram on her liver (to determine flow) while I struggled with a skin infection on my arm. Although my mother and I belong to different health provider networks, navigating the health care system for caregivers and the people they care for provides the basis of a love/hate relationship.

Photo by Gordon Dymowski

My mother had scheduled the procedure for 12:45 pm on a Friday, with our arrival time at 11:15 am. (Thankfully, I had called my doctor for an appointment about my skin infection the previous week, but was sent to Immediate Care due to a lack of appointments) A notification text the day before had indicated the time moved up to 2:45 pm, but my mother had clarified the time since we were depending on medical transportation. So we were both surprised when that Friday, at 5:30 am, we received a call from the transportation provider asking if we could be ready for a 7:00 am pickup. From that point,

• We arrive at the hospital with nothing in their records about Mom’s appointment. After being bounced through various departments, we learn where we’re supposed to head, and we’re allowed in.
• After arriving at the appropriate department. , we wait for Mom to be prepped. To kill the boredom, I sign up for text notifications about Mom’s procedure. While waiting, I call my primary care physician for follow-up; luckily, I’m able to schedule an appointment in between job search efforts and watching YouTube.
• Once Mom is formally prepared, I grab lunch and sit in the family lounge. My time is spent writing, doing some job searching, and catching up on social media.
• After making my way into the family lounge, I wait for another two hours when I am notified by an attendant that Mom is heading into her procedure. During this time…
• I receive a call from Mom’s transportation provider; after I apologize for the delay, the driver informs me that his manager does not want his drivers out after 5 pm, necessitating a last-ditch effort (Spoiler: hospital staff ensured that we had transportation home), and
• I discover that it was #NationalCaregiversDay on Twitter, and a tweet declared that “Caregivers are the health care system” and that caregivers “rock” at negotiating health care services.

Photo by Gordon Dymowski

And that’s part of the problem: too many people advocating for caregivers do not understand the totality of negotiating the health care system. (Watch the above video from Last Week Tonight With John Oliver for details). Rather than focus on advocating for systemic changes, these advocates tend to focus on more superficial issues. Many caregivers dealing with the complexities of the health care system on top of their caregiving duties have a greater risk for compassion fatigue and caregiver burnout. There’s a lack of acknowledgment about the burden and toll of caregiving on the individual, substituting self-help platitudes for more adaptive caring strategies and fostering connection and community.

But the greatest challenge in negotiating health care is engaging in self-care as a caregiver. Many caregivers are more likely to sacrifice their own health when caring for an elderly relative, and some caregivers experience health issues as a result. (Mental health issues for caregivers, especially male caregivers, are also critical). Caregivers are rarely reminded that self-care is not an indulgence, but a discipline. Negotiating a complicated system only adds to a caregiver’s stress; working to “game the system” makes it harder for caregivers and their relatives.

Photo by Gordon Dymowski

Final note: I was fortunate to learn that my skin infection was easily treatable with antibiotics.  However, getting to that point involved negotiating a tricky, often contradictory system that lacks empathy for patients and their loved ones. With the recent focus on public health issues around the coronavirus, it would be tempting to take a less even-handed tone about health care. However, caregivers – like many other people – have a complicated relationship with health care because of bureaucracy, costs, and lack of access to services.

And it shouldn’t be – health care is not an indulgence, it’s a right.

Please join the conversation via our Facebook page or leave your comments below.

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!

Help Caregivers Feel Gratitude This Thanksgiving & Holiday Season

As National Family Caregiver Month comes to end, it is important to recognize that unpaid caregiving is becoming more of a national trend. (I should know – I have been an unpaid caregiver for my mother for several years). With Thanksgiving and the holiday season fast approaching, it might be a great opportunity to discuss how we can support family caregivers more effectively and help them through difficult, emotionally challenging times.

Caregiving Is Becoming More of a Destination Than A Journey – When you look at current trends in caregiving, with more men and Millennials caring for aging parents and relatives. slipping into the cliche that “Caregiving is a journey” can come across as insensitive, patronizing, and possibly out of touch. Sometimes it’s easy to forget that day-to-day caregiving provides numerous challenges to balancing life, work (including job seeking) and leisure time. It would be easy to do what an online support group leader once did, claiming that a participant needed to “believe in themselves” when dealing with numerous stresses. Caregiving is never easy, and caregivers like me find great solace when someone understands regardless of their own caregiving past. Speaking of being present for caregivers…

Photo by Gordon Dymowski

Encourage Self-Care as a Discipline, Not an Indulgence – Taking a cue from a recent Forbes article, too many people – including caregivers – see self-care as an indulgence. Self-care for caregivers is not about pampering or treating themselves occasionally; it’s about developing a ritual that allows them to manage the challenges of unpaid caregiving more effectively. Exercise, diet, regular physical and mental health checks, and other behaviors can help caregivers develop skills and resilience for handling tough situations.

Offer Tangible Help When Asked – Recently, I attended a caregiver support event where a pair of siblings were looking for a great place to start…and a participant proceeded to lecture about how she “turns her problems over to the Father”. Although “thoughts and prayers” can provide some comfort (and spirituality can play some role in caregiving efforts), early-stage caregivers are at a loss to even start to find needed resources and relief. When a caregiver in your life asks for help, make it tangible and realistic. Whether it’s monetary or a moment of support, supporting friends and colleagues who are caregivers is critical to helping them find moments of quiet. And on that note…

Emphasize face time over Facebook – Caregiving can be time-consuming, and many caregivers don’t take the time to see people face to face. Although it’s easy to check-in via social media, making the effort to engage caregivers in real-time can have greater benefits. Even the act of inviting someone to an outing  – whether a high-end event or a casual conversation of coffee – can have extremely beneficial effects, even if the caregiver cannot intend. (As a caregiver, I enjoy being invited to outings as they help me feel less isolated, lonely, and overwhelmed).

Dawn Xiana Moon of Raks Geek
(Photo by Nancy Behall)

If you’re looking for an opportunity for face time and advocacy (as we’ll suggest in the next step), why not consider Raks Geek’s December 13th fundraiser for RIP Medical Debt. Think of it as a way to alleviate stresses for a variety of caregivers, including the one in your life)

Advocate for Caregiver-friendly Policies Although there is a curious political silence about eldercare in our country, there are several caregiver-friendly policies that require strong, consistent advocacy. Supportive services like mental health, Medicaid, and SNAP also frequently face legislative challenges, and these policies directly impact on unpaid caregivers and their elder relatives. Advocating for caregiver-friendly state and federal policies have a greater impact on the caregiving community, and these issues deserve your attention.

For many caregivers, Thanksgiving can serve as the harbinger to even tougher struggles during the holiday season. Social isolation, depression, and potential caregiver burnout and compassion fatigue can color how a caregiver perceives the holidays. Help caregivers like me feel more grateful for the holiday season…all it takes are small acts of kindness and consideration.

Thank you so much for reading; if you would like to continue the conversation, please leave your comments or questions below or join us on our Facebook page. Have a wonderful Thanksgiving and a great holiday!

Balancing Caregiving and Job Seeking: A Critical Challenge

When I took on caregiving duties for my mother, I was – like many other caregivers – in a slightly precarious work situation. Although I was balancing caregiving and freelancing, it became a challenge to manage both my mother’s immediate care as well as my own personal matters. As I am now actively seeking full-time employment or short-term consulting, I am finding that many potential employers and my professional peers make it especially challenging…and with current caregiving trends, things need to change:

• The cost of unpaid caregiving could double by 2050, and at least one state is experiencing a shortage of paid caregivers;
• Although there are some federal policies that could positively impact caregiving, there’s a curious political silence about eldercare;
• Caregiving is becoming more diverse, with 40% of men and 1 out of 4 Millennials taking on the task, and
• Caregiving duties have a greater impact on marginalized communities.

In short, caregiving is no longer a “journey” – it’s a destination. Employers and peers need to be informed and account for this when making hiring decisions. So as a caregiver actively seeking work, here are some insights from my own experience:

Many employers should consider adopting more flexible remote work and family leave policies: Many jobs do not require someone to be in the office every day, and more flexible remote work policies can accommodate any employee dealing with a family emergency. Not only does this accommodate caregivers who have last-minute emergencies (or even regular issues, like helping an elderly parent get to their medical appointment), but you’re also providing a perk that will attract more candidates.

If you work in human resources, consider how you’re treating candidates: When you interview someone and they’re not the right candidate,  make sure you inform them as soon as possible – like many job seekers, I have been “ghosted” by several potential employers (and on some level, there is the slight tint of ageism). You also might want to reconsider your use of one-way video interviews; although your intention is to make it convenient for job seekers, expecting anyone to prep (including dress up) to answer questions directly into a camera as part of “screening” indicates a lack of seriousness in your candidate search…as well as a gaping flaw in your human resource process. 

Even finding “side gigs” is a challenge: Although “side gigs” are one strategy that makes balancing caregiving and job searching easier, finding and starting gigs can be daunting. Although I’m very open to suggestion: one friend suggested that I start consulting with individuals and nonprofits around installing Linux distros on older hardware. (And if you’re interested and have not connected with Free Geek Chicago – contact me via e-mail and we’ll talk!). It’s easy to see freelancing and side as “hot and sexy”, but what gets lost is the fact that there are many myths about the “hustle” of the gig economy.

Networking is more than schmoozing: One particular source of personal frustration is being invited to a large “networking event when I ask for contacts in specific fields/companies. As a caregiver, my time is valuable and I have to be frugal with my resources. I’ve also learned from Rona Barre of Instant Access to engage in strategic, targeted networking, even to the point of having an “I Consult, Hire Me” sign up when I’m coworking to encourage conversation. Although getting out and socializing is a good thing for caregivers, our time is a resource that needs to be allocated with some discretion. Speaking of which…

It’s important that you hear us: Yes, it is difficult for caregivers (especially men) to articulate our feelings, and it’s often hard to hear that yes, caregiving can be especially challenging. But whether we’re asking for professional contacts, employment opportunities, or even support, it’s easy to know how not to say the wrong thing. (One good example: avoid the “Caregiving is a journey” cliche, especially since the introduction to this post busted that myth). Even if all you can realistically offer is moral support (by inviting us out, including us in your gatherings, etc), our “no” should not be seen as a rejection or a dismissal…because caregivers are often rarely heard by their greater community.

I hope that whether you’re looking for potential job candidates, encouraging your friends who provide caregiving for their relatives, or even a caregiver yourself, understand that yes, balancing caregiving and job seeking is a challenge. Although we are enduring some tumultuous times, constant reminders that we are all enduring our own struggles, and expressing compassion, empathy, and encouragement are the best tools that help us through the worst of it. If you have questions or comments, please leave them below or join us on Facebook. And as always, thanks for reading!

Caregiving, Career, and Creativity

Two weeks ago, I was fortunate enough to win the 2019 Pulp Factory Award for my short story “Knights of the Silver Cross” in 1950s Western Roundup. After winning the award, I decided to take a break from creativity and writing. Working on creative projects for two years non-stop while balancing caregiving duties and freelance work has been especially challenging, and taking a break has enabled me to recharge and regain a strong sense of focus.

Caregiving an elderly, ill parent often means a greater need for self-care, and my own efforts to maintain relationships and stay connected were becoming compromised. Think of caregiving as “parenting in reverse”: there are similar dynamics to raising a child, but while a child tends to develop upward, an ill parent requires greater effort and time. Self-care, especially focusing on other relationships, can be particularly challenging to caregivers, and I was finding myself feeling increasingly isolated despite a non-stop schedule (including a successful Doctor Who panel at C2E2). Engaging with my friends and colleagues requires consistent effort, as well as a self-reminder that I have a community of friends and colleagues supporting me even if I am not always aware of it. Plus, I have also started a south side Chicago caregivers meetup in order to bolster my efforts to find support but to also “pay it forward” to other caregivers.

One of the other aspects of caregiving is balancing my “regular” duties while seeking freelancing work and consulting assignments. One of the great challenges is finding time for professional networking: my schedule does not always permit me to attend the plethora of networking events in Chicago. So my efforts have been more focused: touching base with several contacts, running a coworking meetup, and attending nontraditional events focused on specific kinds of clients rather than larger scale, two-drink-minimum kinds of events. I have also had to consider the kind of work I want to do, focusing more on freelance and remote work than traditional full-time work. Finding employment can be a challenge for anyone; for a caregiver, it can be especially daunting.

Especially in terms of current attitudes towards work and employment. For those who openly embrace the myth of “crushing it”, my efforts are inadequate (in other words, I’m not “trying hard enough”). Many individuals often advocate that I simply just “get a job to care for your mother” as if jobs are prizes to be won rather than opportunities to utilize my skills. Not only should professional work come before everything else, but my creative work should be “freely available” and without recompense. (Recently, I had to remove a member from Chicago Doctor Who Meetup for not only trollish behavior but for suggesting that I simply “accept modern technology” when it comes to the effect of digital piracy on my work as a writer). Being creative when facing both life challenges and negative attitudes from others can become increasingly difficult and means shifting priorities.

Shifting those priorities and managing time effectively in the midst of all of this has impacted my ability to write and blog consistently. Our current cultural lack of empathy towards working creatives (including writing, music, film, and other media) has resulted in an attitude of “I-know-better-than-you” from those who may not understand the totality of effort. (Just look at YouTube “critics” declaring that certain works have “failed”, or that there is “too much diversity”.) Blogging allows me to express myself, but also allows me to highlight lesser-known efforts around technology, social change, and other community-based efforts. Writing New Pulp fiction allows me to express and resolve more intense emotions, but also requires time and distance that my caregiving duties may frequently impact. Achieving a sense of balance and equilibrium is possible, but requires great effort.

So why am I writing this post, you may ask? Many caregivers like myself are often held to unreasonably high expectations, being told that we’re heading “on a great journey” without acknowledging our specific challenges. Caregiving for an elderly, ill, or dying relative can be physically and emotionally taxing, and our current culture does little to provide basic support to empathy. People like me who care for a relative (especially caregivers in marginalized communities) require resources and support if only to provide them an opportunity to express themselves and their experiences. I am fortunate that between this blog and my fiction work, I recognize that I have the luxury of having my voice be heard…

…and recognize that many other caregivers are not as fortunate, yet they need to have their voices be heard.

Want to share your comments or experiences? Please leave them in the area below. Please join the conversation and follow us on our Facebook page, or join our Patreon community. If you want to contact me directly, please use this email contact form.
And as always, thanks for reading!

Caregiving, Self-Care, and Staying Connected

One of the most brutal effects of this past winter has been its effect on my caregiving and my own self-care…and nearly cost me my sense of connection with others.

It may sound obvious, but one of the critical issues facing adult caregivers is the balance of caring for a family member and maintaining their own health. (In my case, my mother is my primary responsibility which started with a foot infection, and is now followed by her daily struggle with type 2 diabetes, chronic heart disease, and other related maladies). Between personal illness (I’m getting better – I promise!) and the struggles of maintaining a job search and other creative endeavors, my energy level has been low. Not low enough for depression, but low enough where I never felt I was getting enough “done”. Even efforts to drive a passive income, such as my writing Patreon, were being left in the dust…not out of apathy or laziness, but with limited emotional and physical resources.

(Thankfully, I have been engaging in some self-care behaviors to work through many of my issues. However, one of those behaviors – writing on a basis – was limited to journaling. That’s part of the reason why this blog has been a bit dry.)

Winter and caregiving also took a toll on my social life, as well…and that proved nearly fatal to my self-esteem. Being physically limited (after all, who wants to head out in thirty below wind chill weather) resulted in my attitude shifting towards negativity. Think of it less as “fear of missing out” and more towards believing that, at best, I was a minor player in my friends’ lives. Like many others, I was spiraling towards caregiver burnout and compassion fatigue, assuming that my life (as I knew it) was over, that my options were limited, and that quite honestly, I could easily fade out of my friends’ lives without being missed. Yes, I would be mourned if I passed on, but not acknowledged if they merely passed me by.

Luckily, there was a gradual progression in several aspects of my life that made caregiving and self-care easier and boosted my confidence. My networking efforts towards freelance consulting and full-time marketing work have progressed slowly yet evenly. (Revising my resume after a recruiter informed me that I needed to “beef up (my) resume before (she) could even consider working with (me)” was key…especially since I learned I didn’t have enough “bullet points”). Smaller victories like seeing a recent short story published by Airship 27 Productions and a Doctor Who panel approved by C2E2 helped boost my self-confidence). As my health improved, my capacity for self-care increased as I was spending more time tending to my physical health and establishing healthy boundaries.

(Spending less time on social media and more time on face-to-face interaction when I could help).

But two events this past week helped place my self-care as a caregiver and my personal connections into sharp contrast. The first was a surprise birthday party thrown for me at a recent Chicago Doctor Who Meetup – with my schedule being crowded over the next month, a volunteer chose to throw it sooner rather than later. The other, sadder event was the sudden passing of a friend and colleague who I knew through the Chicago TARDIS Charity Auction. She wasn’t much older than I am, and her passing hit me hard. (I’m working on a tribute to be coming soon). But both events reminded me of something that, as a caregiver, I take for granted;

I have people in my life. I matter to them. I may not always experience it directly, but I have to work at connectedness in order to stay connected.

All of this reminded me of last year’s post around social media and friendships, and so next week – my birthday week – I’m going to be heading out and engaging friends and others when I can. Tuesday night will see me running the Chicago Doctor Who Meetup out of LaCatrina Cafe in Pilsen. Wednesday – my birthday proper – I have no plans, but I’m staying open. Thursday night will see me reading at Open Books. Friday night will be my “unofficial” birthday party as I will be attending Raks Geek, and Saturday afternoon (if I’m able) I hope to catch Chicago Nerd Social Club’s Almost Pi Day at Open Books.

As a caregiver, I can easily avoid self-care and maintaining connections. After all, it is always easier to focus on the negative aspects, listening to the voice that says “Caregiving is all I can do at this point – no one will hire me, I have no other activities, and my life is over”.  But part of my role as caregiver is precisely self-care, allowing me to nurture my own emotional and physical well-being enough to carry out those roles. Part of my caregiving role also includes allowing my friends to be supportive…even if it’s just knowing that they’re concerned and want the best for me.

This year, the best birthday present I’ve received….Ok, it’s a copy of Doctor Who: Scratchman by Tom Baker. But personal growth, healthier self-care behaviors and the importance of staying connected? Definitely great gifts as well.

If you have comments or questions, please leave them below or join the conversation on our Facebook page. If you wish to contact me directly, please feel free to use this email contact form.

And as always, thanks for reading!

Supporting Caregivers During National Family Caregiver Month

My previous post discussing caregiver burnout…well, many of my friends and readers noticed. And I wish I had waited to write it since I recently learned that November is  “National Family Caregiver Month.” And has been since President Obama declared it so in 2012).

And this year’s theme, “Supercharge Your Caregiving”, portraying caregivers as superheroes…well, for this caregiver, it’s extremely tone deaf. It romanticizes it when really, it is a challenge. It’s a challenge for me to deal with day-to-day duties, and I know it’s a challenge for my friends. (Although the way caregivers can “supercharge” their work is through tech…but to be honest, most of the time caregivers like me need basic human contact.

I have no problem asking for help, but I know many of my friends who have not “been there” wonder how they can help. So this week, I’m offering some suggestions about how you can help, and what you might want to consider. Think of it as a positive spin on my previous post, and with recent news about federal legislation towards “supporting” family caregivers…I thought it might be good to provide some guidelines for those who may be unable to have these conversations.

The first thing I want to say is that caregiving brings up a lot of difficult emotions. I empathize with those friends who have no idea how they can help; I often want help but am unsure what to request. I know I can’t ask my friends, “Hey, sit with Mom while I do stuff” (My friends are all over the city, and I get breaks when Mom’s homemaker arrives), and schedules are often difficult to coordinate. So I understand how difficult it can be for them to know how to support my caregiving efforts, and having informal face-to-face gatherings is often difficult.

However, getting together with friends to socialize and feel connected does happen. Thanks to winning a contest (which I did not expect), I was able to see two of my friends with their troupe perform at their new theater. (Hint: here’s an interview with one of them from earlier this year). Another friend – a more recent colleague from a past activity – reached out because he was concerned. We ended up hanging out, walking, and having a decent conversation. So yes, I am touching base with people – and it can be challenging – but it can be done.

(And yes, I am getting outside help for dealing with greater struggles around caregiving. And if you want to read this as code for mental health issues, I won’t stop you).

Another thing to keep in mind…if you’re looking to do things with us, try to keep it frugal. As one of my fellow Chicago Now bloggers reminded me on Facebook, caregiving for Mom isn’t a paid position. (Yes, I’ve looked into being a paid caregiver; without going into details, that’s not an option for me). My resources, such as they are (and I’m always looking for full-time work and/or consulting gigs) are limited. So the fact that I’m not exactly “crushing it” in the gig economy should not be seen as a lack of effort…more as a huge restriction of time. (Try to think of it this way: I’m like a parent of a toddler…only that toddler is seventy years old). Put simply: casual coffees and get togethers are much easier to schedule than attending paid high-end networking events.

On a final note…yes, talking to caregivers about our experiences is awkward and can be difficult. You want to be empathetic, and want to say the right thing. My suggestion is that you not only avoid these seven things you should never say to a caregiver..but also be careful when using two specific statements. They are things that are commonly said with the best intentions…but often ring false:

• “You’re really a good person for doing this”
• “Caring for a parent isn’t a burden – it’s a blessing”

Unless you’ve been a caregiver (and three of my friends actually have been in my position when saying this), these statements have all the warmth and empathy of “thoughts and prayers” after a school shooting. These statements almost always ring false in my ears, and I have to remind myself that they are said with the best intentions. (Except for friends who have informed me of their own history of caregiving; I know they are speaking from experience, and I can accept what they say more easily)

Although many adult caregivers find their efforts meaningful, many others (like me) have to work hard to endure moment by moment. Complicated emotions around grief, loss, and a sense of obligation make things difficult. Caregivers do need regular support…and hopefully, this post can help those who know and love caregivers make a greater effort to reach out.

Several people have reached out to me since my caregiver burnout post, and I’m making my way back. I only hope I can do the same for others.