Caregiver, CEO: Steps to Foster Caregiver Resilience

Sambrookes-McQuade, Laura. “Caregiver, CEO: Steps to Foster Caregiver Resilience.” The ISHA VOICE: Newsletter of the Illinois Speech-Language Hearing Association (October 2021) p. 21-23. https://www.ishail.org/october-2021  Retrieved 11/22/2021.

There is no guidebook for parenthood, and similarly, there is no guidebook for making the shift to the caregiver of a loved one. I'll never forget the moment that I watched my precious, wide-eyed, impulsive, loving, and funny 5-year-old son fail the "photo-whatever" portion of a series of tests to determine if he had epilepsy. I did not need to see the EEG to confirm the diagnosis of epilepsy as I watched my child's eyes dart back and forth uncontrollably as the bright lights flickered on and off in front of his face. Every fiber in my being was screaming for the technician to stop the test. Instead, quiet tears rolled down my face as I met my child's father's eyes in confirmation of the inevitable diagnosis in that examination room.  That was my moment when not only did I have the role of mother to my child, but I was also indoctrinated into the role of being caregiver, advocate, protector, and director of all things related to my child's health and wellness.  Unfortunately, this is not a unique experience. I've watched my parents assume this role for their aging parents. I have observed this shift to CEO of another's health and well-being repeatedly happen upon receiving the news of challenging information in healthcare.  When faced with this crisis of the receiving the challenging news related to our loved one’s health,  what strategies can we use to help ourselves move from "fear, anger, confusion, and a tenancy to assign blame" to "determining the best course of action given new realities?" (Margolis & Stoltz, 2010 p. 89).  How do we move from the shell-shocking awareness of our current situation to foster caregiver resilience for the benefit of ourselves and our loved ones?

As resilient caregivers, we need to avoid certain pitfalls. Margolis and Stoltz recommend that avoiding patterns to assigning blame should be avoided.  The blame game will keep us trapped in negative thought patterns that reinforce previously learned, potentially maladaptive coping mechanisms.  Keeping our focus on the here and now shifts our gaze to what we can control.   Secondly, we should avoid seeking counsel from well-meaning but potentially ill-informed people who confirm our fear-based or negative thoughts or beliefs (Margolis & Stoltz, 2001).  We want to avoid falling into previously established habits that "deflate our energy and keep us from acting decisively," known as "deflation" and patterns of victimization "assuming the role of a helpless bystander in the face of an adverse event" (Margolis & Stoltz, n.d., p. 88). Thought patterns of deflation and victimization can prevent us from seeing meaning in the situation at hand.  Our role as resilient caregivers, and CEOs of our loved one's medical care,  will be supported by avoiding: casting blame, keeping community with people who confirm our self-defeating view points, and avoiding personal deflation and victimization. 

Quickly See the Situation From an Objective Viewpoint

In borrowing from leadership literature, we find that specific behavior patterns support resilient leadership necessary for executing the title "CEO of Caregiving."  Margolis et al. (2010) recommend that  we engage in behaviors that allow us to build up our "capacity to respond quickly and constructively to life events" and to "move quickly from analysis to plan of action and planned reactions.” Similarly Coutu suggests that the skill of "facing down reality" or "seeing a situation objectively and moving on quickly" works to move us out of the state of initial shock to action.  Margolis et al (2010) suggest that this skill can be practiced during smaller daily annoyances that sap energy, such as an unexpected wait while making a medical appointment or speaking to multiple people to manage one medical bill. "When we prepare ourselves to act in ways that allow us to endure and survive, [we are training ourselves]  how to survive before the fact" (Coutu, 2002, p. 50). Through practicing seeing the situation objectively as well as using minor daily inconveniences as opportunities to practice resilience caregivers can strengthen their ability to quickly recoup from receiving challenging information.

Find Meaning In Our Situation To Benefit The Greater Good

Coutu (2002) suggests that searching for meaning supports our ability to be resilient in the face of challenging situations.  Moving beyond the "why me" mindset,  and exploring what other opportunities may be presenting themselves as a result of the problem supports caregiver resiliency. Use the adverse situation to create meaning for yourself or others through "building bridges from present-day hardships to a fuller, better-constructed future (Coutu, 2001 p. 50).  We may not be able to remediate a terminal diagnosis, but we may be able to raise money for research, volunteer for an organization to support progress in the medical field related to the diagnosis or memorialize the impact the person's life has had on shaping our own in a personal and private way.

Develop Daily Practices to Support Personal Adaptability Through Rethinking Control, Impact, Breadth, and Duration of Our Situation

Allision (2011) recommends building a practice of personal renewal.   “Resilient [caregivers] make time for activities that revitalize them physically, emotionally, spiritually, and intellectually” ( Allison, 2011, p. 81). By renewing yourself personally, fuel is added to the tank to continue to "show up" for the demanding work of caregiving.   Margolis and Allison both recommend self-reflection through journaling as a daily habit as a vehicle for developing a practice for self-renewal.  Not only is journaling an important habit to cultivate but more specifically, Margolis (2001) recommends  that it is important to allow time for self-reflection through journaling responses to "response-oriented thinking" questions.  Margolis (2001) states that we can ask ourselves questions that challenge our beliefs about our situation's individual levels of "control, impact, breadth and duration."  By developing self reflection skills that focus on shifting the way we think about our loved one's condition, and practicing this skill every day, we will foster a more resilient inner dialogue. Changing the way we think and speak to ourselves about the situation will help provide the stamina and perseverance we need to support our loved ones and foster our resiliency.

Margolis (2001) defines ”control” as factors available to us as an opportunity for immediate impact. Response-oriented control questions include: "what features of the situation can I (even potentially) improve? (p.91)."  Allison (2011), on page 81, suggests similar questions that address personal agency or control through encouraging "action and learning in the face of loss.” "Action and learning in the face of loss" questions include

·       What is the new reality?

·       What next milestone are you working toward?  

·       What can you do immediately to support the people who are affected the most?

·       How can you show others this challenge will not get you down?

·       What skills, habits and knowledge do you have that will work here?

·       What can you eliminate now? What are you willing to give up?

·       What is the best opportunity this situation could lead to

·       What has this loss or challenge cleared up for you?

·       What are the best lessons here and how will you use them in the coming weeks?

Margolis et al. 2001, defines "impact" as focusing on what positive influence our actions might have on the future.  Examples of impact questions include "what sort of positive impact can I personally have on what happens next?" Similarly Allison (2011) on page 81 suggests similar questions that address issues of "cultivating vision in the midst of crisis" including:

·       What is your new vision? How does it resist the "pull of the past"?

·       What will your celebrate

·       What do you wish to let go of that is holding [you] back?

·       What about this challenge puts a bounce in your step?

Margolis et al. 2001 defines "breadth" as the overall impact of this challenging information on all aspects of your life. "Response oriented thinking" questions  include "How can I contain the negatives of this situation and generate currently unseen positives?"

Margolis et al. 2001 defines "duration" as how long we feel that this situation will impact our lives. "Response oriented thinking" questions to challenge thoughts of duration include "what can I do to begin addressing the problem now?" (Margolis et al 2001, p. 91). 

Manage The Emotional Climate

Lastly, it is essential to use words to create a positive emotional climate with your support system (Alllison, 2011). Resilient [caregivers] manage the energy, outlook, engagement, and cohesion of their [support network]  through their words and actions. Taking time to plan out a strategy for managing the emotional climate of your home is as important as establishing the next item on your to-do list. 

Victor Frankl said, "we must never forget that we may also find meaning in life, even when confronted with a hopeless situation when facing a fate that cannot be changed. For what then matters is to bear witness to the uniquely human potential at its best, which is to transform personal tragedy into a triumph, to turn one’s predicament into a human achievement. When we are no longer able to change a situation-just think of an incurable disease such as inoperable cancer-we are challenged to change ourselves." As CEO of Caregiving for our loved ones we can use strategies of: changing how we respond and think about our loved one's situation, self-reflection, and building positive support systems to help cultivate our resilience. This will help us to maintain our” mental and physical health” (Margolis et al 2001, p 92). By protecting our psychological and physical health, we will take better care of the loved ones who rely on us as we assume the vital role of Caregiver, CEO.

Dr. Laura Sambrookes would like to acknowledge coursework obtained through the SLPD program at Northwestern University, specifically the direct instruction of Dr. Sumitrajit (Sumit) Dhar as the course director of CSD_563 Leading Speech Language Pathology as inspiration for the content of this article.

References

Allison, E. (2011). In the face of change and crisis, the resource we need most is our resilience.

Educational Leadership. p. 79-82.

Coutu, D. (2002). How Resilience Works. Harvard Business Review. p. 46-55

Frankl, V. (1946). Man's Search For Meaning.  Quote retrieved 09/01/2021 from

https://www.goodreads.com/quotes/6788284-we-must-never-forget-that-we-may-

also-find-meaning

Margolis, J. D., & Stoltz, P. G. (2010). How To Bounce Back from Adversity.  Here’s a way to understand—And redirect—Your instinctive reaction to crises. Harvard Business Review p. 87-92